The Barnards

Christmas 2011

2012-01-02T22:05:00.000-06:00

To start the season off, Kenlee had a Christmas program. Does my kid look like a giant?

Bryan, Ashley, Deacon, and Finley came in town for Christmas. We had a special guest show up this year again! The kids thought that was the best thing ever. Katelyn is really into Santa this year. On the way home she was so sure that she heard the reindeer bells!!

Katelyn has been into weddings and people getting married lately. Aunt Brandi won the best present award. She didn't want to take this off and asked if she could wear it the next day to church.

So I made the girls outfits and hair accessories this year for Christmas. I loved loved loved making them.

My sister came in after Christmas to spend a few days with us from Fort Collins, CO. It was great having her here. I think we probably stressed her out a bit but we had a great time.

My family is crazy!!

Updates with LOTS of pictures

2011-11-13T22:01:00.000-06:00

Well I don't even know where to begin....
First of all, sorry it has been so long since my last post. Things have been crazy busy.
This is going to be a long post with tons of pictures so get ready.

Back in August I went out to see my sister in Fort Collins, CO. I have never been out West before, as any vacation I choose to go on is South and has a beach. To my surprise, I loved it! Fort Collins is absolutely beautiful. They are very dog friendly and people ride bikes there like its going out of style!! They even have a bike library, where you can rent bikes, locks, and helmets from various bike libraries. Then you can return them at other locations. It is something Evansville could use since we are voted one of the fattest cities. Here are some pictures.

My sister had a program that officially recognized her as being accepted into the Veterinarian Program.

The university was doing research on climates that flowers grow in so they had flowers everywhere. It was absolutely beautiful.

Couldn't leave CO without going to the Rockies.
I can't wait to go back. Brandon asked me a few days ago where we wanted to do Spring Break and I told him CO. As much as I want to take my kids out there, I think we are going to wait until the Summer (less snow).

My cousin Elizabeth got married this summer. Aunt Sue sent me a picture from the wedding that is hilarious. It truly shows our kids personalities. Joanna - completely backwards, she does everything different than any of my other kids; Kenlee - goofy kid; Katelyn - ticked at the world; Alexis - not really wanting to go along but will do it if the has to. Enjoy.

Daddy took the girls out for their first fishing experience. They also got to go backyard camping with daddy. Nothing like camping in the backyard with an electric blanket, and iPad, and Netflix. Perfect.

Halloween 2011 was the first attempt of mine to ever make costumes. They had a great time going around and getting candy.

Katelyn had a Daisy Girl Scout sock hop so I again tried to make our outfits. As I was making them, Kenlee said she wanted one so I had to make her one as well. We all had a great time.

Did I mention that I am the Daisy troop leader!!!

Joanna is walking everywhere!! We have been released from all of the doctors in Cincinnati except for Orthopedics. We go back up there in the next few months to have a spine specialist take a look at her. We are also being followed by the upper and lower body docs as well. She has such a personality. Loves to make people laugh and still has a smile all the time. She loves life that's for sure.

Katelyn is doing very well in school. Got our first report card and it said she was a joy to have in class. Kenlee is a big helper at school according to her teacher. I just wish this was the case at home.

Thanks for taking the time to read about our family. More updates to come.

You are Invited....Fundraiser for the Hendrick's Family

2011-09-21T14:37:00.003-05:00

As most of you know, Miss Ellie went to be with Jesus on August 28. Brandy, April's cousin and I, started planning this fundraiser for Matt and April a few months ago. Although Miss Ellie is no longer with us, we know that this family still has expenses they are working through since being relocated for the last 5 months and having their daughter in the NICU for 3 months of that.

Ladies, are you ready to have a Day Out?! Men, want to surprise your lady with something they will love? Christmas is coming....want to get a head start on that shopping?

Join us for an awesome event that not only will benefit you but also help a wonderful family who has been faced with losing both of their children in the past two years.

WHEN: Saturday, October 15, 2011

TIME: 1:00pm- 5:00pm

WHERE: Bethlehem United Church of Christ (6400 Oak Hill Rd), Welcome Center (new addition on North side of building)

We will have the following companies there with products you can purchase and take home with you that day. You will also have the opportunity to place orders and have your items delivered to you. All company's have agreed to donate a % of their sales during our event ONLY, to the Hendrick's family!!!

Mary Kay

Custom Cards

Premier Jewelry

"Initials" Handbags

Scentsy Candles

Custom Hairbows and Tutus

Tastefully Simple

Pampered Chef

Tupperware

We will have a variety of h'ordeuvres and hot apple cider as well as much more. Please join us as we support this wonderful family.

Questions?? Jessica 812-204-5266 or Brandy 499-4241

Katelyn's First Day of School

2011-08-11T14:25:00.000-05:00

Yesterday Katelyn started Kindergarten at Oak Hill Elementary. Oak Hill has always been a Middle School up until this year - it is now a K - 6 grade school. She has been so excited about starting and absolutely couldn't wait to ride the bus. When we were told where the bus stop was, it made more sense for me to take her to school. I wasn't able to see the stop so I was going to have to load the kids up in the car anyways to drop her off and pick her up there. After talking to some people, I decided to contact the school transportation division and see if there was anyway she could be picked up closer to our house. Let's just say her pick up and drop off location was moved to in front of our house! I'm not sure how this happened but I am so thankful. This little act alone made our school year!! When she came home I asked her how her day at school was and she said it was perfect. Here are some pictures of our little school girl.

If you're wondering, I was fine. How could I not be excited for her when she was so excited.

We made our bus driver, "Kenny" some cookies.

I think she was a little nervous but she got over it!

Birthday Party for Katelyn and Kenlee

2011-07-12T21:01:00.000-05:00

Katelyn turned 5 on July 7, and Kenlee turns 3 on July 14. We had their birthday party this past Saturday. I know I won't be able to do this next year because Katelyn will want to start inviting her friends from school but this year they both agreed on the same theme so it was a go. Here are some pictures from the party.

Special People

2011-06-26T23:02:00.000-05:00

I never thought I would ever be interested in running. Don't get me wrong, I do NOT enjoy it but I do like the thought of getting exercise and a little time to myself! For those of you who don't know, I am signed up to do the Half Marathon in October so when I heard about the Colon Cancer 5K Race in June, it was a good distance for me to be at by that time. My good friend Tabitha is a colon cancer survivor and this race was to honor her strength and courage during her fight over this disease. Please keep her in your prayers, she is going in for a scan tomorrow morning to confirm that her cancer is still gone.

After the race I went to spend some money at Keegan's Rummage Sale. His blog is attached to ours so please check out his story. He is fighting for his life - one way is by going to NYC for a wonderful opportunity to be a part of a new study to beat his disease. This is going to be very expensive but as a parent, it doesn't matter what you have to go through, you will fight for your children no matter what. Please consider helping his family out at purchasing some BBQ. When we were going through our own trial last year, our friends put a similar fundraiser together and it helped our family out so much. You can purchase the BBQ at www.bbqbenefit.com, it will be ready for pick up on July 16. If you are out of town or don't eat pig, please go to the website to make a donation. Thank you in advance for your generous hearts.

I had the privilege last week to go see Ellie again in Cincinnati. She has stolen my heart from the moment she was born. Her parents and I only met a few months ago but have grown so close. She had to have surgery this week. April has posted the most beautiful pictures of Ellie on their blog. We have it linked to our blog - go meet her.

When I got into town I met April and Matt at my favorite restaurant in Cincinnati in June - Dewey's Pizza. I only like it during the month of June because they have a specialty taco pizza that is SO good. The waitress told me that it was a good thing I came in when I did because as of Sunday the taco pizza was no more until next year. I decided to go in and get a table and had been sitting there for about 10 minutes when the table next to me got up to leave. I looked up to see one of Rebecca's nurses that I haven't seen since June 10 of last year. (I loved when we had her. I remember talking to her about making a scrapbook for Rebecca and she gave me some websites that I could create them on. She even brought in one of her own scrapbooks so I could see the quality of them.) She was eating with another nurse that we haven't seen since June 10. (If my memory serves me correctly, she was our night nurse our first night in the CICU. She was so patient with us. As you can imagine we were very inquisitiveness and scared - not a good combination. I also remember one time, I thought Rebecca's bed warmer warmed her a little too much. She happened to be our nurse that night and I kept asking her questions about why her head was so hot and warm and if she needed to do something to fix it, if she was too hot - she loved me that night.)

I remember it so clearly... we were walking out of the unit to leave with our sweet Rebecca and both of them came over from the other wing of the unit to tell us goodbye. That is the kind of people who were caring for Rebecca. When they tell us that Rebecca holds a special place in their hearts it's true, they really loved her. We have been up to the CICU many times since we left there with Rebecca but we are never there during night shift hours. I have wanted to see our night nurses so bad - I love how our God works.

Thank you to everyone who was praying for our family this month. June 10 was full of different emotions. I felt so blessed though to be able to sit with her at her grave during the hours that were so tough a year before...we got to talk and listen to songs together. My mom stopped by and gave me the most beautiful and precious letter that I will cherish my entire life. It was a letter written to me and Brandon from Rebecca. Here is a picture that I took at 6:15pm.

I am re-reading a book that describes what someone goes through after losing a child. My sister-in-law lent me this book right after Rebecca passed away and the similarities in it to our situation was unbelievable. It has touched my heart in so many ways and if anyone has lost a child, knows someone who has lost a child, or just wants to know what emotions a mother goes through after losing a child, I would encourage you to read this book. She writes, "People constantly ask how it is that I am not angry with the Lord. My honest answer is that I have been angry, and I have been disappointed. What I have not been, and what I refuse to be, is disbelieving." Angie Smith, I Will Carry You.

One year ago....

2011-06-10T07:34:00.000-05:00

It started as a normal day. I had been able to share another sleepover with you the night before in the hospital bed they brought in for us to share. I loved being able to sleep next to you. I remember, we had a nurse whom we had not had before that night. She and I were talking about the song, "Temporary Home" and how much we liked it. It had just started playing on the Christian radio station that we had on in your room at all time, now that you were in a private room.

Joanna had reached the time when she was able to start taking a bottle. I headed over to UC to document this wonderful moment for her. It was so hard to leave Children's, where I was worried and scared about you, and head over to UC where I was excited and joyful that Joanna was progressing.

I got back over to Children's and laid with you. That was my spot. If I was there I was laying in bed with you, watching your every move and studying your every feature. You were so beautiful. You were going to get through this, I didn't care what the doctors said. One of the doctors wanted to talk to us yet again, so I reluctantly left your side and went to have a conference. I knew what they were going to tell us - the same thing two other doctors told us when they said they wanted to talk to us. They wanted us to stop care and let you go. It was starting to tick me off. Why wouldn't they just leave us alone.

Daddy and I left the meeting more emotionally drained than before we went in there, if that was possible. I went right back to your side. Daddy tried talking to me about my thoughts on what they were asking us to do. I would not stop care on you. You were my child, whom I loved with all my heart. If God wanted you, he was going to have to take you. This was the first time in this entire process that your daddy and I were not in agreement. He loved you so much but he knew you were slipping away. I was praying for God to tell me what I was supposed to do.

Then my sign - your song "Our God" came on. You were going to be ok. There was nothing that could change my mind. About 30 minutes later "Temporary Home" came on. God was talking to me through a song as he did so many times during our journey. In an instant, I knew you were slipping away from me and that it would only be a matter of time before you were gone forever. It was a pain that I had never felt before. I decided that instead of letting you lay there by yourself and pass away that I wanted to be holding you and loving you as you slipped away.

You were telling my heart, to let yours go.

How could I tell the doctors to turn off the machines? I am your mom, I'm supposed to love you and fight for you. It was unacceptable. I had said all along that I was never ever going to make that decision. If I let you go, what was that saying, that I didn't love you? You were a twin - that means there is two of you, not one. Would Joanna ever forgive me? Would she feel an emptiness?

After praying for God to help me understand why things were coming to this crossroads, I came to the decision that I needed to let you go. It was the hardest decision I have ever made in my life.

It was time...they placed you in my arms for the last time. The whole time I was questioning if we were doing the right thing. I felt a peace but it was quickly followed by regret. They took your breathing tube out and the tape off your face. You were so beautiful. This was the first time I had seen your precious face. You looked so much like Kenlee. Everyone left the room except Daddy, he sat beside us. I couldn't help but touch your face over and over. There were no monitors, no beeps. You were so peaceful. As the sun was setting, I remember the light filling the room. I knew you were gone at that exact second. After only about 10 minutes, the nurse came in and told us you were gone, but I already knew that. As your mother, I knew the moment you met God. I kept telling you over and over how sorry I was. Even though I knew we were doing what God wanted us to do, I wanted you to know how sorry I was for letting you go. I felt so guilty. My heart was broken, it will never be whole again. Time stood still.

My Sweet Rebecca, I love you.

Some say time heals - that is not true. Time will never make my loss any less painful.

Rebecca's foot print and hand print are etched into her stone - so precious.

Updates...

2011-06-05T15:05:00.000-05:00

I know it has been awhile since a post but this summer has been CRAZY!! We are going all the time - swimming at Aunt Sue's pool, going to Boonville Water Park, the Zoo, and bunches more.

Here is our life in review since our last post.

1. Katelyn graduated Pre-K and is on to Kindergarten. She will go to Oak Hill Elementary School next year and the thing she is so excited about is riding the bus. Katelyn and Kenlee had a graduation program at their school where they sang songs and had a slide presentation.

2. We took a trip to Wayne City to visit grandparents. I am hoping to do that a lot more this summer. I bought 50 quarts of strawberries while we were up there to make strawberry jam and bagged strawberries for the Barnards famous "Strawberries and Chocolate Chip Cookies".

3. After 8 months of practicing, Katelyn had her dance recital this weekend. She did a tap and tumble routine. She did such a good job out there. Kenlee couldn't wait until the recital was done so she could play dress up with the outfits. Katelyn and Kenlee will be taking dance lessons beginning in September.

4. Thank you all so much for your continued prayers for Ellie. She has been doing great and continues to get healthy. Ellie is doing so good that April gets to hold her today. I'm sure she will be posting pictures on her blog later tonight so be sure to check it out.

5. The girls are looking forward to spending time with their cousin Deacon who is in town this week. They ask to go play with him all the time and we have to have a talk about how far away he lives from us.

Thats all for now.

Ellie needs prayer NOW

2011-05-27T13:52:00.000-05:00

Ellie is not doing good. She has been switched to another vent but really needs prayer now. Please pray for her healing.

Ellie, doing much better

2011-05-25T22:07:00.000-05:00

Thank you to everyone who has been praying for Ellie. Instead of me updating you through my blog on her progress, I want to invite each of you to click on Ellie's Blog to the right of our blog as her parents are blogging. They also have pictures of her posted, absolutely beautiful.

Ellie is Here

2011-05-25T10:11:00.000-05:00

Please, with all your heart, pray for Ellie. She is very sick and needs everyone praying for her. Her family is mentally, physically, and emotionally drained at this point and they need your prayers.

Tomorrow is the Day!

2011-05-23T12:14:00.002-05:00

Ellie is gong to make her entrance into the world tomorrow. She is currently head down so they are going to begin the induction process and she should be here tomorrow am or early afternoon if everything goes as planned.

Thank you all of your prayers. This family has become very special to us.

Ellie is coming!

2011-05-22T16:55:00.000-05:00

Hey all, just wanted to let you know hat April is in the hospital. She was out eating with family and started feeling different. She went in and they are going to keep her. Please pray for April, Matt, and Ellie. I'll keep you updated!

Praying for Keegan

2011-05-17T22:24:00.000-05:00

Our family was wearing green on Monday for Keegan. I explained to my girls why were were praying for him and why we were wearing green. Today I went to Katelyn's class and I heard her in the hallway telling one of her friends that we were praying for Keegan because he had to have surgery.

Praying that everything went well yesterday.

Fun times at school

2011-05-14T14:20:00.000-05:00

Last week the girls had a field trip to the zoo and a school picnic. Their last day of school is May 19th. I can't believe Katelyn starts Kindergarten in August. Time goes so fast.

We bought season passes for Katelyn, Kenlee, and myself to Holiday World. They love going there, oh who am I kidding, I love going there too. We can't wait to start using them. I think the last time we bought season passes we went 14 times that season (and that is when I was working full time)!!

Here are some pictures of the girls at their school activities this week.

This weekend - NEW

2011-05-09T21:44:00.001-05:00

Saturday I went to Cincinnati to see April and Matt. They are a couple Brandon and I met when we spoke at the Right to Life banquet a month or so back. I am so grateful they came up and introduced themselves to us that night because we share so many things that most families do not have to experience. I can only explain it as a God thing. We had a great time on Saturday. We talked the entire time (imagine that!). I loved getting to know them and know that we will be friends forever. I have their blog attached to ours - please take a look and pray for their family as Ellie will be entering the world on May 23!!!

Mother's Day was very emotional for me - more than Rebecca's and Joanna's birthday. I remember last Mother's Day I went to Rebecca's hospital and the NICU staff gave all mothers a red rose. Joanna's hospital gave me a tag blanket that a nurse had made. Each year on Mother's Day we will take Rebecca a red rose so as to never forget my first and only Mother's Day with her.

I have been reading along with our blog from last year on the same days we posted them. It so hard for me to know now that a year ago Rebecca was already slipping away from me and I didn't know it. What I wouldn't have done differently if I knew I would only have a month left. I have been struggling with anger against the hospital. How could they not have known something was wrong. A sign of heart failure is fluid retention - she was a 3lb baby who passed away at around 8lbs. Are you telling me they didn't have a clue that she was going into heart failure. When I brought it to their attention that she was beginning to gain weight or fluid around her neck the only thing they thought about was a tumor, which they couldn't find. Not once did they talk about a cardiac issue that may be causing this. **NEW** Don't get me wrong, I love, love, love the hospital and the staff who took care of her. They gave me 74 days with her and I am so grateful for that. ** I know that things happened for a reason that is unknown to me but as a mom, you can't help the thoughts and emotions you experience. Your child should never die before you. A mother should never have to bury her child. It's just not fair.

March of Dimes

2011-05-01T19:26:00.000-05:00

We had our 1st annual Barnard Twin's Team walk in the March of Dimes this Saturday! The weather could not have been better. My kids were great and Brandon didn't get stressed out at all (both are amazing!!). Our team raised over $1600.00! Thank you so much to everyone who donated money and walked on Saturday. It was a great time. I plan on next years team being bigger and better so heads up!! Each team member walked with a pink balloon in honor of Rebecca since that has been her symbol for our family. After the race, some of us went out to the cemetery and let the balloons float up to her. Here are some pictures from Saturday.

Happy Easter!

2011-04-24T21:04:00.000-05:00

Well despite the rain, it was a beautiful day. It started this morning when Kenlee and I made breakfast and took it up to Alexis and Katelyn so they could have breakfast in bed. We went to church (hadn't been there in a few weeks due to being out of town). It was awesome!! I absolutely love our church. After church we went to my family's easter lunch. It was great to see everyone. After easter, my cousin Amanda is expecting her first child in July, so we had a baby shower for her. Yes Amanda, I did make the nursing cover for you - it was not bought!! We went to see Brandon at work. We were going to see Rebecca but it was so nasty out that we decided to go later this week and take her an easter basket then.

Brandon and the girls and I went to see his family in Wayne City yesterday. We had a wonderful lunch with the Clifton's and were able to visit with the Barnard's for a short while before heading home.

We are so blessed to have such wonderful families who love us and our girls.

Happy Easter from the Barnard's.

Rebecca wanted my attention today

2011-04-20T22:39:00.000-05:00

Today was very unusual. Beginning first thing this morning, I heard "Our God" playing on the radio while I was getting the girls dressed for school. Because we had a school delay, we were around the house awhile longer today and before we left I heard it again. My mother in law took the girls for a "girls day out" and I was listening to the music channel on the TV. I heard both "Our God" and "Praise You in this Storm". As the day went on and the kids came back, I heard both songs on the radio again. Then tonight I went to Family Christian Bookstore and while I was in there I heard both songs. Now we are a family that never turns off the radio, but I have never heard those songs as much as I had today.

Rebecca wanted her mommy's full attention today. It has been really hard knowing that a year ago I was living a completely different life. Time is going to fast - it's so hard to let it go. I know it may seem weird to people, but I would give anything to still be going through the fight just so she would be here with us.

I remember a year ago I was surprised to find a picture at Rebecca's bed of her and the Easter Bunny that the NICU staff took for us. I saw on the news that Tri-Fest was last weekend. I remember that was my first trip back home last year after the girls were born. Rebecca not being here never entered my mind a year ago. She was healthy, just needed to gain some weight in order to get her procedure done.

Our family will never be the same as it was - we are changed forever.

A Family in Need of Prayer

2011-04-17T21:08:00.000-05:00

A few weeks ago Brandon and I spoke at the Right To Life Banquet here in Evansville. We told of Joanna's fight to be here and how doctors asked us numerous times to terminate Joanna in order to save Rebecca. It was an awesome event and I hope we get to be advocates again to save babies lives.

After the program we were approached by a couple who we immediately had a connection with. They are our age and last year they were expecting their first baby. She was 40 weeks along in the pregnancy and when she went to the hospital to give birth, her sweet baby girl had passed away in the womb a few days earlier when her cord became wrapped around her neck.

They are now expecting another baby this summer. Their baby has some serious complications that were found on ultrasound so they have been going to Cincinnati to see the Fetal Care Center specialist. From what I remember, her child's organs are all on the opposite side of the body. They are inside but every one of them is switched around on the opposite side. Her child also has a mass in a lung, and holes in her heart. They chose to go to Cincinnati, as we did, because of the reputation of Children's Hospital. They have been seeing the same specialist we did. She will deliver at University Hospital and her infant may be in the NICU there to be stabilized but will eventually be moved to Children's Hospital. She is due in June but believes they are going to have her deliver around Memorial Day. Who knows how long they will be in Cincinnati. It am so grateful that they came up to us so we could be a support system for them. I remember her saying she didn't know anything about the hospitals up there but after talking to us (if this is your first time reading our blog, I love UC and Children's!), she felt so much better knowing she is going to be in good hands. I remember that was a BIG fear of mine. When the ambulance took me up there to be admitted, we had to go through the ER and there were people everywhere with blood all over them and they were screaming. I remember looking at the EMT and saying, "I think I made a wrong decision coming to this hospital." Boy was I wrong - they saved my Joanna's life!!

Please, please pray for them. I haven't been able to get them off of my mind since we met. Unfortunately I don't have any way to contact them but if you are reading this, please contact me. I would love to talk with you again.

Last Day of Vacation :(

2011-04-15T19:40:00.000-05:00

Well the time has come to say goodbye to the beach...

Aside from Kenlee's new fit throwing, we had a great time. The weather could not have been better. When we woke up this morning I told Katelyn that this was our last day here. I asked her if she was sad and she said she wasn't. She said she missed home and would never say that she didn't like home again!

Here are some pictures we took today. We are planning on leaving around 3am tomorrow to try and get the girls to sleep some in the car - we'll see how that goes.

Vacation Update

2011-04-14T07:37:00.000-05:00

Well I surprised the girls yesterday and took them to Disney's Magic Kingdom. They were so excited. As we walked down Main Street towards the castle, Katelyn said, "Mom, this is like a dream come true!" We got there soon after the park opened and left around 11pm. It was a long long day for Kenlee, but Katelyn did very well. She had to walk most of the time so I know she was tired. The weather was great - lower 80's and sunny. I'm not sure if it was because we were in between spring break week and the week before Easter (a busy week according to Disney) but the longest we had to wait in a line was 40 mins. It was so nice! Here are some pictures from yesterday as well as some beach pictures. We only have 2 more days of sun bathing so I better get out there!

On the right side of the picture you can see a dolphin.

Girls love playing in the sand. This was their first castle.

It rained on us in the early evening hours Tuesday so after the rain pushed through we brought out the kites. We had three of them going but Katelyn let one go. She was upset but we told her she gave that one to Rebecca so she could fly a kite with them! She liked that.

One out....

Two out...

It has been a great vacation so far!!

Florida Girls Trip

2011-04-10T17:22:00.000-05:00

Katelyn, Kenlee, and I left Friday afternoon with my mom and her 2 friends from work, Lana, and Kathy. We drove half way on Friday, got up really early Saturday and drove the rest of the way. We made it to Daytona Beach around 1:30pm on Saturday. Our rooms were not ready yet so we changed into our swimming suits and started having fun. We all crashed last night around 10pm and slept until 8am this morning.

Day 2 - Sunday

Weather is great. Sunny, highs around 90. We spent most of the day either at the pool or beach. Girls are having a blast. They love to jump the waves. Today's waves were much stronger than yesterday. Umbrella's, I have decided are lifesavers. That was the only way we were able to stay out as long as we did. We have just gotten our showers and are ready to go get some peel and eat shrimp from Down Under.

Kenlee picked up a crab out of the ocean. It was dead but she didn't know that. She has no fear.

Joanna's Birthday Party

2011-04-04T22:02:00.000-05:00

This Saturday we had Joanna's birthday party. What a celebration!! I can't describe to you how it feels to look at her today. To know that she was written off from the beginning yet sits here in front of us today making us laugh. She is a true miracle!!
She did perfect at the party. Was in a great mood and loved the attention. Here are some pictures from the party. We went out to see Rebecca and take her some balloons, flowers, and her princess birthday hat.

Great New Song

2011-03-29T15:33:00.000-05:00

I heard this song a few weeks ago and had to have you all listen to it. There are so many moments that I question why we and so many others have to go through such hard times in our lives. Why would a loving God allow these things to happen to His people. As hard as it is to listen to the words of this song, there is comfort in the words. I have to hold on to the fact that because of what we had to go through our relationship with God is so much stronger than it was. I hope you like it and it too gives you hope and comfort.

http://www.youtube.com/watch?v=4mmgV6mPvb0&feature=related

Happy 1st Birthday!!

2011-03-28T22:00:00.000-05:00

Well one year ago today at 12:27pm, my beautiful daughters were born. I can't believe its been a year - seems like just yesterday. I wasn't sure what emotions I would go through today but for the most part it has been a good day. How could it not be - I have a miracle sitting in front of me.
Thank you to everyone who sent "birthday wishes" and "thinking of you" wishes. You have no idea how much those meant to us. It is comforting to know that people haven't forgotten about our girls. That is a fear of mine that because Rebecca was so young and only a handful of people got to meet her in person, that she will be forgotten. But I know that that is not the case - she touched so many lives while she was here.

Brandon was scheduled to work today but he was able to get off for about 7 hours to spend the day with us. After the girls got out of school, we went out to the cemetery and had a birthday party. Unfortunately, because the ground has been so wet they were not able to get the foundation set for the stone. So after the cemetery we went to place that did our stone. It has been done for a few weeks and they put it outside for us to see and get pictures of. It is beautiful! I wanted to share some pictures from today....

I put a hat next to Joanna in memory of Rebecca. This picture is priceless.

We decided a tradition of ours will be to let a balloon go on her birthday with a note letting the person who finds the balloon know how old Rebecca would have been. It was overwhelming to see the pink balloon going up in the air as I haven't seen that since her funeral.

Brandon and I went up to Cincinnati this weekend to attend Lindsay's (Joanna' primary nurse) wedding. When she scheduled it on the girls birthday weekend I knew God had her do that for a reason. You see Cincinnati is my second home. I love going there because it houses my best and worst memories. I feel a closeness up there that I can't describe. God knew my husband wouldn't just take me up there for a weekend on the girls birthday weekend, but he knew that is where I needed to be. We got to see so many people up there who will forever be a part of our lives.

To the NICU staff who took care of our precious girls: Thank you from the bottom of our hearts. You will forever be a part of our lives. Don't ever think that what you do is forgotten. There is not a day that goes by that you ALL are not thought about. I love each and every one of you.

Happy Birthday Girls! Mommy loves you!

Spring Break 2011

2011-03-25T21:23:00.000-05:00

Brandon and I decided to take a vacation to Branson, MO this year for spring break. I was a little worried about not having things to do with the kids but boy was I wrong!

We left Evansville around 4pm on Friday and drove straight through. I was driving and about 30 min before we got to Branson my gas light came on. Keep in mind, it's about 10:30pm and there is nothing ahead of us but miles and hills of highway. With my car saying 0 miles until empty, I took an exit that said to have a gas station .5 mile up the road. This was not true...We got back on the highway and spotted a closed gas station ahead. By this point I am stressed to the max. I can just see Brandon having to walk a dark hilly highway to find gas, while I sat in a cold van on the side of the highway with 4 kids who were sleeping now but would most likely not be once the car was stopped for an extended time period. Brandon wanted me to drive up to the closed gas station but since I knew it was closed I was not wanting to waste anymore gas than needed. I stopped the car and got out so he could drive-my nerves were shot by this time. He pulled up to the station and without any lights on at the gas station he was able to get an entire gas tank full of gas. I never knew you could pull up to a closed gas station and get gas. It had to be a God thing!!

We had a 2 day pass at Silver Dollar City. First day were were in sweatshirts and freezing and the second day we were in shorts and flip flops! What a difference a day makes!! We went to a few more shows - we had a great time. Brandon was a little stressed but I think he had fun.

We came back hone yesterday - home sweet home. It is definatly a challenge to take 4 kids on vacation but I love knowing that I am making memories for them as my parents did for me.

Happy St. Patrick's Day 2011

2011-03-17T09:05:00.000-05:00

March of Dimes - April 30, 2011

2011-03-15T15:55:00.001-05:00

Our family is very excited to be a part of March for Babies this year and hope you will join our team - The Barnard Twins! We are going to have team shirts made up for anyone who joins our team!!

The money we raise for this walk will support March of Dimes research and programs that help moms have full-term pregnancies and babies begin healthy lives. It will also be used to bring comfort and information to families with a baby in newborn intensive care. Every day, thousands of babies are born too soon, too small and often very sick. We're walking because we want to do something about this. We don't want anyone to have to go through what we went through.

Please join our team. You can do so on our Web page (http://www.marchforbabies.org/team/t1527694). If you can't walk with us, please consider helping our team reach our goal by making a donation. You can do that online as well.

Sewing Projects

2011-02-27T23:37:00.000-06:00

Here are the dresses I have completed so far. Again, the plaid dress was a dress shirt of Brandon's.

I am going to add straps to the black and white dress that cross in the back.

Still trying to get in the hang of this....

2011-02-26T07:40:00.000-06:00

Sorry it has been awhile since our last post. I am still trying to get the hang of posting regularly!

We had a good Valentines Day. It has been bitter sweet for our family since 5 years ago on Valentines Day my Uncle Dennis passed away. My Aunt Sue, his wife, had made a wreath for him so with her help and the help of my girls, we made a Valentines Day wreath for Rebecca.

The girls had Valentines Day parties as their school. Here are some pictures...

I have started a new hobby - sewing! I love to have my girls matching so instead of buying 3 of each things, I am going to try my hand at making them various things. I made my first pillowcase dress for Joanna in about 3 hours. Yes I said 3 hours. I know it is only supposed to take an hour but I had to watch a tutorial for every step so hopefully in the future it can go a little faster. Yesterday I made a dress for Katelyn and Kenlee. I am trying to make dresses for them from Brandon's shirts off of this website - rather difficult for a beginner I think. But I am determined since it is adorable.
http://www.dana-made-it.com/2008/07/tutorial-shirt-dress.html

Brandon got his hands on a couple huge boxes that he brought home for the girls. The girls loved it and we were going to make them into a simple castle. Well those of you who know my husband know that he does nothing simple...he went all out. Let's just say he went to Menard's at 8pm to get things for the playhouse! Of course I had to add some of my new hobby to it.

Yes, it is equipped with lights and carpet!!

Joanna has changed so much in the last few weeks. She gained 13 oz. in 2 weeks which is more than their goal for her. She is now 14 lbs. 13 oz. She is able to sit up on her own, she has found her voice and likes to scream at us, and her hair has been growing out and getting really thick. I can't believe she is almost 1.

A Week in Pictures

2011-02-03T14:55:00.000-06:00

Katelyn had a very busy Saturday. She was invited to go to Cooper Davenport's birthday party at CMOE. For those of you who don't know who Cooper is, he is Katelyn's really good friend from Methodist Child Care. She has not seen him since this summer but asks me all the time to go see her friends there. It was great to see her with her old friends again! There was a station in the museum where she was able to paint her face. Of course she loved that.

I then took all of the girls, minus Joanna, to the Aces game. They had a great time. It was our girls night according to Katelyn. By the way the Aces won against Southern Illinois.

Because Kenlee is doing so well at her potty training, we celebrated at "Daddy Town" aka Gatti Town. The girls love this place. There favorite is the Frog Ride. Katelyn was finally tall enough to ride the bumper cars.

Last weekend I made everyone get outside for at least 30 min. because it was so nice. The yard was way too muddy so we went to a playground at the girls school. Daddy started jumping off of the swing.

Joanna likes to stick her tongue out.

Then after playing it was nap time.

Joanna at 10 months with a pencil. I believe Brandon will continue this tradition for another 2 months until her 1st Birthday.

Good Weekend...

2011-01-26T22:11:00.000-06:00

Our prayers are being answered, Kenlee has finally decided to potty train! She is telling US when she has to go potty. She is not completely trained yet but she is very close. Hopefully within the next week we will be 100%.

My friend Tabitha and I were able to enjoy an afternoon of eating and pedicures! It was so nice to get to hang out with her. A big THANKS to our family who watched our girls for us.

After rescheduling 3 times due to the snow, Kenlee got to go on her school field trip today. She had a great time! The slide was her favorite.

Snow Day!

2011-01-20T17:43:00.000-06:00

The kids got yet another day out of school due to the snow. It has been snowing since about 8am this morning. They get a little stir crazy inside so it was a good thing that daddy was home today. He likes to take them out and play in the snow - they had a blast. Joanna and I stayed inside - way to cold for us! Enjoy the pictures. As I was getting the girls dressed in their warm clothes, Brandon decided to put Joanna inside of his overalls. What a dork!
After they finished playing, it was time to drink some hot chocolate and warm up.

Posts to come regularly......

2011-01-17T16:25:00.003-06:00

I know many of you probably have given up on our blog but I do want to try and keep new posts coming as often as I can. I just recently purchased a new laptop so now that I have one that works - I thought this should be a priority of mine.

Since the last post...

Kenlee loves school She is our "funny" child. Don't get me wrong, all of our kids make us laugh but Kenlee tries to make us laugh. She has this new thing she does with her leg as she is walking. She kind of kicks it up to the side and turns as she is doing this. Her new favorite thing is to pray. She wants to be the first one each night and then after everyone goes she wants to pray again. She is such a joy to have.

Katelyn goes to school M - R from 8:30-12:10. She has made many friends and is now asking me on her days off when she is going back to school. She is into fashion, always has to have her hair up and a necklace on. She loves to layer her clothes and enjoys playing dress up.

Alexis earned straight A's again this semester. She recently signed up for 7th grade classes and seems pretty excited about what she signed up for. She is involved in a small group with Bethel Temple and loves it.

Joanna had some dr appts in Cincinnatti in December. The spots on her liver where gone! They want us to get a scan done here locally in April and then come back up there one more time in September to get one last scan hopefully. Ortho did some xrays of her arms, shoulders, knees, and ankles. This was the first time any scans had been done to see what was under the skin. Everything looked fine from what they could see. They said she has made such great progress that they really don't want to cast anything on her right now. They want her to keep growing and gaining strength and see us in September to see how much better movement she has with her limbs. Joanna gets therapy once a week for an hour. We have a great therapist who comes to our house - its very nice not having to take her out. She is feeding well. We now go to get weighed every other week! Last week she weighed 13 lbs. She has started eating some homemade baby food. Her first food was avocados, then sweet potatoes, rice cereal, and bananas. She loves the bananas. She can only get food once a day and can only have about 1-2 tsp. Reason is we don't want her getting full on the food and then not drinking the bottles. And for those who were curious, YES she is still getting breast milk. I still have a frozen milk supply. I had to stop breastfeeding awhile back because she just wasn't doing well with it. My hope is that I can get her to 12 months actual age.

Christmas was actually good. Our family adopted Lucianna, a little girl from Peru who shares a birthday with Joanna and Rebecca. We chose to support her through World Vision in memory of Rebecca. We went out to see Rebecca on Christmas. My aunt made a wreath to put up by her grave so we took that out there. Then of course we had to build her a snowman. Her monument is ordered and should be placed before her birthday. There is still not a day that goes by that I don't miss her. I think about her often as well as our experience in Cincinnati. I miss all of our new friends up there so much. I still keep in contact with quite a few people.

Below are some pictures from Christmas.

Catching Up

2010-11-29T22:15:00.001-06:00

I’ve been thinking recently about why I haven’t blogged like I did when I was in Cincinnati. Other than the poor excuse of not having the time like I did when I was there, I have realized the more probable reason. The name of the blog alone tells the reason, The Twins. For months we blogged over and over about the twins. After Rebecca died, there were no longer twins to blog about. I tried, but every time felt a block when there was nothing to write about Rebecca and felt unable to write about anything else. Last night I decided while I was at work today I would update the blog.

Yesterday was Rebecca and Joanna’s 8 month birthday. I’m posting a couple of pictures showing what 8 months have done for Joanna. She is still having trouble gaining weight. Jessica just called and told me she has lost 1 ounce this past week. The week before that she lost 2 ounces. The feeding clinic is trying many different techniques to help her increase her weight gain. Right now and for the last 2-3 weeks she has been without the feeding tube, hence the weight loss. She got to the point where she was pulling it out about every other day. Without it they decided to flavor her breastmilk with Nestle Strawberry milk syrup. She loves it but she was puking every time she ate. So, they decided to give her straight breast milk without even the Neo-sure powder. She has been doing that for about a week now but still not gaining. She is still growing in length and her head circumference but not adding weight. She is very alert. This weekend we put her in her bouncing seat that hangs on the door opening. She is trying to figure it out and likes it in short sessions. She is cooing and talking all of the time and knows how to get what she wants. She is sleeping through the night for about 12 hours which also contributes to her weight loss. We went to Cincinnati about 3 weeks ago for a cardiology genetics visit. They did an echo and found that her PDA is still open but they can’t hear it anymore so they think it’s closing. They are wanting to rule out any sign of cardiac issues that affected Rebecca that could be genetic. They don’t see any sign of that at this point. We go back in 3 weeks for some more appointments and while we’re there Jessica and I will be getting echos done to make sure we don’t have enlarged hearts. They say an adult will show signs by the age of 30 if they have it. Once they rule it out for us, they will be satisfied Rebecca’s was secondary to her congenital valve defect and not genetic. Therefore, Joanna will be given an all clear. She has appointments with orthopedic doctors to follow up on her arms and legs. She has been receiving occupational therapy in our home weekly now since we have been home. She seems to be improving but her neck is still really tight when she tries to turn it to the left. Overall she is doing very well, we just need her to start putting on some pounds.

The other girls are doing well also and are excited for Christmas. Katelyn has been going to pre-school 4 days a week in the morning and Kenlee just started going a couple weeks ago. She is only going Monday and Wednesday for a couple hours in the morning. This gives Jessica some time to get some things done. They do a great job of keeping the house a wreck for us, but they also keep us entertained so I guess it’s a good trade off (see below). Alexis is having a good school year earning straight A’s the first grading period. Last weekend she went to an overnight church camp which she had a great time at. She’s also helping out a lot at church in the children’s ministry, which they are grateful for.

Jessica continues to be an awesome asset around the house. She keeps everything going at the house from laundry to groceries. She don’t know how much she is appreciated, allowing me to work and follow endeavors. She has taken on some part time consulting work that she really enjoys doing. It’s just hard to find time for both of us to do everything we want or need to do. Our neighbors probably think we have the most dysfunctional family because I will pull in and she will leave then vice versa. Somehow we are making it work but there aren’t any extra minutes in the day. Great things are happening in our lives and we are so blessed to have these opportunities.

We finally ordered our monument for the cemetery week before last. We had looked at them a while back but finding the time to go without kids to look and decide on the design made us keep putting it off. Finally, we got tired of going to the cemetery and not having it there. Also, we wanted to make sure all bills were paid before spending the extra money on the one we really wanted. It’s a beautiful stone and it will hopefully be placed in the next month or two.

Going Smooth

2010-08-20T14:13:00.001-05:00

Here is a picture I should have posted a while back. Since her very first picture was of her holding a pencil in the NICU, I take a picture of her every month on the 28th. This one was from July.

I will say now that things are officially going smoothly. Don't get me wrong, there are still times we want to pull our hair out but now we know what to expect most of the time. Maybe it was the heat wave making everything crazy. We took Katelyn and Kenlee to their dentist appointment last week. A couple of days before that, Jessica took Katelyn with her to her dentist appointment to show her how it was ok since her previous experiences at the dentist have been embarrassing. Well, it didn't help. It took one of us holding her down including her arms and legs so they could clean her teeth. She was screaming and literally acting possessed. Kenlee on the other hand did pretty good. I was with her and although I had to hold her down, she didn't act too bad. Katelyn just can't handle the whole thing. This time she was due to get X-rays. We almost didn't do that part just because she was so bad during the check-up. After some coaxing and bribery, we decided she could do it. She did much better for this part, so we rewarded them with Dairy Queen for lunch. Both were given good reports and new toothbrushes/toothpaste. Last night we took Katelyn to her orientation at her preschool which starts Monday. She is really going to like it if we can just get past the initial separation when we drop her off. We are not looking forward to that part. She will be going in the AM, Monday-Thursday.

I want to say, Jessica has really impressed me with the whole stay at home mom thing. Thank you to everyone that brought us meals over the last several weeks since we've been home. Now that those are over, Jessica has even started to cook dinner. Her goal is something new every night that I'm home. I know it's aggressive but we'll see. She has been 100% on top of laundry and dishes also which is awesome, especially given the amount of each of those we go through.

Joanna is still doing very well. She went to the pediatrician yesterday for a check up and now weighs 8# 12oz. and is 21 3/4" long. They didn't change anything with the night time feedings, and she still has the feeding tube. We get one day a week without it on the day we change it out. Keeping it taped is always a struggle. If there's one good thing about the feeding tube, it's that she is sleeping through the night pretty much all the time. Kenlee doesn't make it through the night without wandering into our bedroom to get in bed with us. When I got up at 2:30 this morning to fill Joanna's milk, Kenlee was asleep on the floor in the hall outside our door. Sometimes it's on the floor just inside her door. One thing she is never without is her blanket and pink pillow. A lot of times when she wakes up she will start yelling for the person that put her to bed. Jessica called me the other morning and told me she was awakened by Kenlee yelling, Daddy, Dad, Da-da, Daddy down the hall. One of the churches we went to in Cincinnati played this video in service one day. Kenlee often reminds us of this. Check it out here http://www.youtube.com/watch?v=cNkp4QF3we8 .

Lastly, here is a new video by our friend Chris Weatherly. It was created as a small part the One Life Henderson night of worship that is happening tomorrow night 8/21/2010 at the Henderson Fine Arts Center. Check out the video below and get tickets for this event at http://www.onelifehenderson.com/.

Barnard Story from Chris Weatherly on Vimeo.

Welcome Home Celebration

2010-07-31T16:09:00.002-05:00

We are having a come and go welcome home celebration for Joanna on Sunday, August 8 anytime between 2 pm and 5pm at our house. Anyone wanting to drop in to see Joanna is welcome, we'll provide the hand sanitizer. If you need directions, just email us at barnardtwins@gmail.com.

She went for her checkups Thursday, one at her pediatrician here in Evansville and another at the High Risk Clinic in Cincinnati. Since I had to work, our friend Emily offered to go with Jessica to Cincy. Jessica said the trip was a complete waste of time. The only news from the day was that she only gained 6 oz. in the 14 days and they want her to gain about an ounce a day so they are keeping her night feeds on the pump the same for a while longer and actually increased them just a bit. She just need to start eating during the day a little better from the bottle or mom. Other than that, she is being a pretty good little girl. Our other little ones are making up for her with their behavior. Jessica is doing awesome as a stay at home mom, somehow not losing her mind with them while I'm at work. Katelyn's swimming lessons have been going ok. The first day went great until the end when they let her go down the slide by herself and she got all turned around and went under. She was not happy. The next day I took her and she was not interested in being there at all. With much bribery and threatening, she eventually did as little as possible to keep from having to go to the truck with me. Thursday, Grandma took her and she went off the diving board by herself that day, go figure. We'll see how next week goes. Kenlee is struggling with the potty thing still, sometimes taking her diaper off after she has gone..... not good. Other times she does exactly like she is supposed to. We know it's a learning process so we just need patience. Alexis is in her final couple of weeks of summer break before going to middle school. She's not looking forward to getting up early again.

Click to enlarge

Finding Normal

2010-07-24T13:05:00.000-05:00

We have been home for a little over a week now and are all starting to find our normal again. First of all, Joanna is doing very well. She is still getting a continuous feed by pump for 12 hours at night but sometimes she wants a little extra by bottle. During the day she takes her bottles every 3 or 4 hours as she decides. Keeping the tube taped where she can't pull it out is probably one of the biggest problems we have. They made it look so easy in the hospital. I told Jessica we are going to have to order a dumpster because the trash cans we have for pickup don't seem to be sufficient. I don't know how one baby can make a difference but it seems like we take out the trash and empty the dishwasher 3 times a day now and we don't even put the diapers in the trash can or put the bottles in the dishwasher. Thursday we take her to her 2nd pediatrician appointment here in Evansville, then take her to Cincinnati for a follow up appointment at the High Risk Clinic. We have had some in home visits with home health and a person from First Steps for early childhood development for preemies. The other girls are adapting pretty well I would say. Kenlee brings us the remote control constantly and says "Becca Song" which sometimes means she wants to watch Rebecca's movie and other times means she wants to hear Rebecca's song. She always lets us know when it comes on the radio by yelling "Becca's song, Becca's Song". Kenlee has become very whiney and always wants to be held. This week was a big week for Katelyn. We signed her up for Pre-school, swimming lessons and tap class. The new arrangements in the house are slowly working themselves out. Katelyn actually slept in Kenlee's room last night with her because Kenlee got some new flower shaped lights that hang on the wall and she thought those were pretty cool. I topped it off by putting a spare TV in there so they could watch as they went to sleep. The TV in the bedroom thing is a special occasion for them. Jessica is doing well also with the transition from working mom to stay at home mom. She actually told me yesterday, staying home with 3 kids is less stressful than working full time with 2 kids.

Apparently, there are still a couple of people checking the blog so I apologize for the length of time between posts. It was just a lot easier when I was in Cincinnati with nothing else to do. Here are some recent pictures also.

A Great Welcome

2010-07-15T18:36:00.003-05:00

Joanna's Homecoming from Chris Weatherly on Vimeo.

We made it home at 7:00 last night and the trip went amazingly well. We only had to stop once to feed her and she was peaceful the entire trip. The first night also went very well. We, yes we, were only up a couple of times throughout the night and she hardly cried at all. Unless we were just so tired we slept through it with her in our room. Kenlee spent her first night in her new toddler bed in her new bedroom. That was a bit of a problem, but as long as I was lying on the floor beside her, she was cool with it. That has become the routine even in her crib so the new bed wasn't the issue. The most stressful time so far was after everyone left and we were trying to get her milk mixed up for the night feedings. As much as we thought we were prepared to do this by ourselves, there were a couple of small details left unclear. They weren't critical, there are just a bunch of little details with medication, timing, planning, thawing and so on that were always done for us. I have no doubt in a couple days Jessica will have it running like a well oiled machine. There is a pattern of Jessica asking my opinion of something then telling me we aren't doing it that way. With the news of meals coming, that definitely will eliminate a ton of stress. So thank you in advance for helping in that way. After today, I will have a few days off work so we can all enjoy our first real time together. We once again want to tell the nurses, especially Lindsay, thank you for all of the time that you spent with Joanna and that we will miss you.

< 24 hours

2010-07-13T22:05:00.000-05:00

That's how long it will be before Joanna is FINALLY at home in her own house. The anticipation is building and all of the last minute details are being worked out. Scheduling follow up appointments, getting CPR trained, packing everything and cleaning the room at RMH. All of that was on Jessica's end. I have been working on finishing Kenlee's new room and moving her into it, and getting all of the baby clothes, swing, vibrating chair and other essentials out of the attic. You're right, why are we just now doing that? I really don't know, I guess we just wanted to enjoy that extra square feet in our house as long as possible. In 5 years, we have gone from just me, Jessica and Alexis in our house to now 3 additional little princesses and they all came with a little more stuff. The thought of moving now makes me cringe. No, we are not moving anytime soon. We can't wait to have everyone together and make home "home" again. My sister is awesome and she is going to ride with me in the morning over to Cincinnati and come back by herself so I can drive Jessica and Joanna home. It will be 109 days that she spent in UC NICU and she's coming home on Kenlee's birthday which is special other than we won't get to spend it with Kenlee. Between me and Jessica, nearly 40 trips to and from Cincinnati, I had been there about 4 times in my life before March. Jessica and I both have mentioned there is a part of it that we will miss. I guess when you do something for so long, no matter what it is, you become used to it. So when you leave it, there is an adjustment to have to make without it. I don't expect any problems, although there are some people we will miss, like the ones we've missed from Children's this past month - you know who you are! Pod D will forever be special to us and we will look forward to taking Joanna back to visit periodically.

Check out Joanna's pictures she had taken today Here

Happy Birthday Girls!

2010-07-11T16:27:00.001-05:00

Yesterday, we celebrated Katelyn's 4th birthday (the 7th) and Kenlee's 2nd birthday (the 14th). They had an awesome time playing in the water and in their new jumping inflatable. They both got some great gifts but Kenlee is getting the best gift of all. Joanna is scheduled to come home Wednesday on Kenlee's birthday. We are very aware that going home dates can change even as you are getting ready to walk out the door but we are hopeful she doesn't do anything to change it. She did have to have her feeding tube put back in yesterday because she wasn't getting her full feeds from her bottles before stopping eating. I actually put the tube in so I could know how before bringing her home. She will keep it in at home if she needs to. She has had no problems being off of oxygen for almost a week now. Her weight is now 7# 6oz. Here are a few pictures so you see how cute she is now without her tubes.

Rebecca Sue Video

2010-07-06T19:28:00.002-05:00

Rebecca Sue from Brandon Barnard on Vimeo.

Saying Thank You

2010-07-02T21:00:00.001-05:00

Here are a few updates but this post is mostly about saying Thank You.

Jessica was pretty much over her infection on Saturday so she just had it for a couple of days. I spend the weekend with Joanna and came home Monday night while Jessica was able to spend the weekend with friends in Cincinnati hanging out doing girl stuff. Joanna is still doing well and now just shy of 7#. She had her oxygen weaned to 3/4 liter yesterday and is doing fine with the change. We have reached that anxious state where we are really wanting her to get home even if it is on oxygen and feeding tube. We probably would be a little more hesitant if they actually said ok lets get her discharged and we would take her out of there where she is constantly monitored. We continue to truck cooler loads of breast milk home to the point I had to buy a freezer because my parent's was full. I think the one I bought (craigslist of course) may be too small.

I have been wanting to mention some Thank You's on here for a while but I realize that is a slippery slope with the risk of inadvertently leaving someone out. I have come to the conclusion that some of these can't go without mentioning and I will do my best to acknowledge those. I am certain none of this kindness was an effort for recognition or attention and would guess they would rather me not mention it. We feel extremely blessed to have these people in our lives that took it upon themselves to do something to help our family with the expenses we have, and will be absorbing through this. There have been some individuals that have made very generous personal contributions to us and our Twin Benefit Fund, but I'm sure those would not want to be mentioned. One of the most touching stories came out of the fundraiser that was held in Wayne City, my hometown. I was told there was a family with very little that saved their money for a period of time and gave $6 to be given to us. I have no idea who this family is, but we want to say thank you for what means so much more than $6. We have had so many people that we would never have even thought of send us cards and donations, some we have never met before. We want to say thank you to those that we haven't seen in years or even met at all. These are the many that have given a wide range of donations.

The others are those that have collectively put their talents, efforts, and goodness together in organizing and putting on various types of fundraisers for us. When I mention these, please keep in mind I only know what I know. Some of this stuff was happening in a very big way while we had very little exposure to it from being in Cincinnati. We did our best to find out who the major players were in making these happen. I know there were more but here's a few.

911 Gives Hope
Evansville Firefighter Mike Doran asked me several times what they could do for us but I kept avoiding an answer, uncomfortable with asking for anything. They decided to donate $5000 to the Twin Benefit Fund which was to cover the cost of meat and supplies for the BBQ sale. They had a presentation on May 28 which we were not able to attend from being with Rebecca after her procedure 2 days before. Please remember this charity next spring when they have the annual Guns and Hoses boxing match between the Evansville Fire and Police Departments.

Twin Benefit BBQ Sale
Several weeks ago, some guys from EFD got together and decided to open an account at the Credit Union to accept donations. One thing led to another and before long there was a BBQ sale planned. From what I know, this sprouted from my Captain Jim Pauli, Lieutenant Mike Ewald and Captain Gary Green with the EFD. Then it went to the BBQ kings Tim and Will Nalin. In just a few days they had scheduled it for June 19th. Not intentionally, but the due date of the twins. Orders started coming in like crazy and they cooked over 400 slabs of ribs and port butts. Many other people helped out with one thing or another and we thank you all! The bake sale was by another friend Barb Day which makes the best peanut butter balls on earth. If you need any baking done, she's your lady.

Wayne City Silent Auction and Dinner
This event was planned by cousins of mine Kristen and Lezlee Barnard and Amber Green. Unfortunately, this one happened without us also. It was June 4th in Wayne City. It was the same night as Katelyn's dance recital in Evansville and I was in Cincinnati. My parents attended, representing us in our absence. They spent what had to be tons of time gathering donated items for a silent auction and food for the dinner. Thank you to Steve Ehrhart for his delicious cooking. It was great going through the records seeing names of people that I knew growing up. We will be looking for you all at Bean Days this year to thank you personally. Thank you everyone in and around Wayne City for making this event a success. It reminded me big things don't just happen in the "big city".

Methodist Hospital
You were the first to jump into action with a bake sale the first couple of weeks. You had a couple of other events including selling lemon shake ups. It seemed like there was always someone bringing an envelope from Methodist Hospital that was full of cards and money. I'll never forget the first night in our Ronald McDonald House room opening cards mostly from people at Methodist Hospital. I'm glad Jessica was surrounded with such great people in her time there.

Pace with Purpose

Our friend Emily Ryan and her running partner began this organization to raise money for causes while getting people to run and stay in shape. The Barnard Twins were their "cause" last month and they were able to raise funds for our expenses. Thank you both.

Ronald McDonald House
Lastly, for those that have made a contribution to the Ronald McDonald House in memory of Rebecca we thank you for that. We continue to get letters from them telling us of those contributions. We plan to make that charity one of which we will keep dear to our hearts.

I could write all night about how each and every one of the gifts we received made a special impression on us. I think it is important to share with all of you that your generous giving and support has provided us with over $20,000 for bills or other related expenses. Jessica and I hope to have some left over when everything is paid to use to give back in some special ways. We will blog those opportunities when they become available.

Thank you again for everything from what seems the smallest card or gesture all the way up. None of it was accepted lightly or without sincere appreciation.

30 Stinks!!

2010-06-25T23:23:00.000-05:00

Hello again...I have been without a computer this week so it is very good to write to you again.

Thank you to everyone who sent me a text or called me on my birthday. It was so nice to hear from all of you. I feel like I should give you an explanation as to why I did not respond to the birthday wishes (this may be a little too much information for the males). Around 7pm on Wednesday (23rd) I all of a sudden felt very sick. I had a breast infection!! First time I have ever experienced anything like this before. I went that night to get some antibiotics. I felt like I had the flu, fever and all. Unlike when you have the flu and you get to sleep it off - breast infections are not the same. The only way to get the infection out is to pump/feed like it is your job. I slept in between my 2-2.5 hour pumping schedule Wednesday night and ALL DAY on my birthday. Needless to say the plans that my husband had outlined for you in a earlier post did not happen. So I tell you this so you know that I do appreciate the birthday wishes and I'm sorry I didn't respond back.

I will say that the most upsetting thing about this infection was that I had to throw my milk out that I had pumped which was about 16 bottles!!! If I had marked which side they came from I could have kept half of them but since I didn't know to do that I had to toss them. I will be able to keep both bottles of milk after tonight.

On a better note I woke up this morning drenched in sweat (broke the fever) and feeling ok. My mom came up last night and stayed with me so we went to see Joanna. I was able to spend the day with her. I came back to the room to do laundry and get ready to have an exciting weekend. I have some friends from Eville/Henderson coming up tomorrow to have a girls weekend. I am soooooooooooo(12 o's for you Alexis) excited. I need some girl time.

Joanna ate 75% of her feeds by mouth yesterday!! When she gets up to 85% they will take the feeding tube out and see how she does with eating the amount she wants to eat. If she continues to gain weight well then they know she is getting enough for her.

I have been having some emotional days and thinking about how I would have liked things to have been. I know our ways are not His and that is the hardest thing to accept. I was really numb to it all during the time I was home for the services but it's much different being up here and having to pass by Children's Hospital everyday to go to see Joanna. Please continue praying for our family as this is going to be a long road for us.

Happy 30th Birthday Mommy

2010-06-24T00:01:00.002-05:00

After watching this about 25 times I realized this is most likely the best present Jessica will get for her birthday. A couple of days ago the nurses put this hat on Joanna and got a picture. All I want to say is Happy Birthday Jessica, we love you. Enjoy the video and pic.

Almost 30 - Almost 3 months

2010-06-22T23:04:00.000-05:00

There isn't a whole lot new going on the last few days. Since I came back to work this week Jessica has had some lonely time there by herself but that was helped by a visit by her friend Jessica Sunday-Monday. For her birthday Thursday, she is going to have all kinds of fun. Some of her friends are going to spend the day with her and then she is supposed to be going out with some of Rebecca's nurses that night. Her mom is planning on spending the day with her Friday and she has a weekend planned for some fun also. I will be spending the day with Joanna Saturday while mom gets to hang out for a much deserved break. Joanna continues to take her bottles a little more every day. She took every feed by bottle Monday night. She was wore out from it on Tuesday but was still remarkable. The girls here in Evansville went with my mom today to have a McDonalds picnic with Rebecca. Katelyn is asking some questions and showing some emotions but seemed to be better when she was reminded that Rebecca is in Heaven with her frog Dora that died a few weeks ago. Last week Jessica gave her notice to Methodist Hospital that she would not be returning. This really came down to a last minute decision but since Joanna wasn't ready to come home yet and she wanted to actually spend some time home with her there was no way for her to return when her leave had expired. She is going to take a few months off then look for something part time. I know part of this was a difficult decision because of the love she has for the people she works with and the hospital. They have done so much for us through all of this including taking care of our girls, sending gifts, having fundraisers, dedicated prayer vigil, continuous encouragement and prayer, and just being genuinely good people. Those of you that worked closely with her know her heart so I don't have to go on.

Talking Discharge

2010-06-18T17:37:00.001-05:00

We had a Care Conference today with Joanna's doctors and nurses to discuss what will need to happen between now and discharge and beyond. She will continue to build her stamina in breast and bottle feeding and her lungs need to grow and mature more to wean her off of the oxygen. They said the next week or two will really tell them a lot about how she is progressing. She actually took a whole bottle for one of her feedings this morning which is awesome. Usually she will take around half and then the rest will be given through the feeding tube. They gave us a lot of information on follow up care for her after she is home. What I've learned is, preemies aren't just treated as preemies until they're due date. They require special care fore several months or even years after that.

It's going to be hard to not blog about Rebecca even when there isn't anything to say other than we miss her. Jessica and I went back to Children's Hospital to the CICU yesterday for the first time. It was a little odd for both of us. For Jessica it was hard to see another family in our room and them not even knowing that our daughter passed away in there just a week ago. For me it was difficult to walk past another room and see another little girl in an adult bed. Overall, we held up pretty well. We were there for a presentation of a donated piece of equipment in Rebecca's name. It was donated by a friend of our families' and his company ICUcare, LLC. This piece of technology will allow videoconferencing over the web so family members can "be there" when they can't actually be there. The staff was really excited to receive this gift and are eager to implement it into their daily use. The display cycles through a picture of Rebecca, a picture of us with Rebecca and a letter that I wrote for the unit that I will post below.

At 28 weeks gestational age my wife Jessica and I delivered twins
girls on March 28, 2010 at University Hospital. Rebecca was diagnosed
in utero with a congenital heart defect so was transferred to
Children's Hospital after birth. Her sister Joanna remained at
University Hospital NICU where she continues to grow. As Rebecca's
parents, Jessica and I rode the ICU roller coaster for 74 days at
Cincinnati Children's Hospital. The first 51 days were in the RCNIC
and the remaining 23 days were spent in the CICU. In that time, we got
to know many wonderful people as they cared for our daughter. Possibly
just as important, we got to know ourselves. What we learned was, no
matter what situation you find yourself in, trust in God and he will
provide you with the strength to carry out whatever plan He has for
you. His plan for us was to show Rebecca Sue love and comfort until
the time that he invited her to be with him June 10, 2010. In just a
few days we found ourselves, by circumstance, being brought closer to
some of the nurses and doctors here than we ever thought possible. As
a firefighter, I sometimes have a difficult job but nothing like what
was displayed in these units. The doctors and nurses here went beyond
themselves to help Rebecca. We were told for several days that only a
miracle of miracles would allow her to live. We held onto that miracle
every day until the end. While they continued their care for Rebecca,
they allowed us the time we needed to accept what was happening. The
dedication you all show to your job lets those watching know it's more
than just a job. Thank you for your compassion, honesty, perseverance
and tenderness. May God continue to use your hands to do his work.

Brandon & Jessica Barnard

Remembering Rebecca

2010-06-15T23:42:00.009-05:00

There are many ways to describe the last few days. Some are emotional, beautiful, meaningful, and purposeful.

I told Jessica this morning we are now a labeled couple. We will from now on, often be referred to as the couple that lost their little girl. There are days of everyone's lives that are marked for many different occasions. Out of 365 of them you have birthdays, anniversaries, Christmas and so on. The older you get I guess your calendar slowly fills up with those significant dates. We just added a few to our calendar for the month of June. While remembering those days as the saddest of our lives we can at the same time remember them as the most beautiful. From the visitation Saturday, to the funeral service Sunday when my friend Jeff opened with Chris Tomlin's version of Amazing Grace (My Chains Are Gone) where I imagined being in Heaven singing it to Rebecca (It was honestly the most amazing thing I have ever heard in my life). To the burial Monday where the shade from the tree that Jessica picked for Rebecca to be beside, protected most all of us from the sun. Finally, ending with the release of 74 pink balloons into the air, one for each day of her life. As they floated into the sky, it was like each day came flashing back into my mind for each one of the balloons. When they were nearly out of sight, my thoughts turned to more of Rebecca's ascension into Heaven. There were so many things that I will never forget. When was about halfway to the car to get Rebecca, Katelyn started running after me. She hung on my arm as I walked, carrying Rebecca to her awaiting grave. Then, when I played Rebecca's song Katelyn lightened the mood by dancing for us. Of all of these moments, the one that I probably will remember the most was after nearly everyone was gone, Jessica walked back to the casket, knelt down beside it and gave her a kiss.

We want to express our sincere appreciation to everyone that made it to any or all of the services for Rebecca. Also, thank you to those that have posted comments of encouragement or sympathy. Memorial contributions made to the Evansville Ronald McDonald House totaled $500. We will be making that donation when we return from Cincinnati.

Jessica and I went to visit Rebecca this morning before we left to come back to Cincinnati. We plan to visit her often. I wanted to tell the girls we would go visit her anytime they wanted but Katelyn said she wanted to go see her about 5 minutes after we left the cemetery.

Joanna is now 6# and tonight she took half of her bottle by mouth. She is doing great with her feedings each time a little better than the time before. Tonight, Jessica and I gave her a bath and held her for most of the afternoon and evening. My parents, Bryan/Ashley/Deacon and Alexis also came to see her and held her today also. When we left UC tonight we had to drive past Children's Hospital on our way to Ronald McDonald House. It was an odd feeling. Jessica and I neither one looked over there or said a word.

Below is what I read at the funeral service.
Here are a few of my favorite pictures. We took the picture of the "twin" rainbows when we were going home Monday. I will be uploading some more to an album soon.

Welcome.

Not knowing how far I would get into this I want to first say thank you to Jessica, the best partner I could ever go through this with. I want to tell my princesses how much we love them and have missed them. And I want to tell everyone that has picked up our slack here at home while we are away how much we appreciate what they do.

At first, I didn't think I would want to say anything today, but after a couple of days of thought, I realized I would forever regret not speaking at this moment.

We all knew when we came here today, this wasn't going to be a funeral that most of us had experienced or will ever have to experience again, hopefully. So, how do we as Rebecca's parents make her day special? We make it about music and worshiping her creator because that is what the family that she was born into does. Yesterday morning when we were at home getting ready to go the funeral home, I walked upstairs to change clothes and as I walked past Alexis' closed door I could hear her radio blasting "How Great Is Our God" by Chris Tomlin. I just stopped outside her door and listened and cried. I did until the station went to static then I heard Alexis say KENLEE. Then I just laughed and walked away.

The majority of you here have probably followed our journey the past several weeks on the blog. I'm sure at times you felt like you were a part of the journey, I hope you did because we felt like you were part of it with us.

I didn't think there would ever be a time that I would ever share these next stories to anyone beyond Jessica but now it makes sense. You see, God has been preparing me for this loss for several years. On October 13, 2007 after seeing Mark Schultz sing "He's My Son" at the Evansville Christian Life Center annual banquet, Jessica and I sat parked on the riverfront where I just wept and explained to her how I had this overwhelming feeling that I was going to lose someone close to me. About that same time when Katelyn was 1 or 2 I remember rocking her to sleep one night bawling my eyes out with that same feeling again. The scary part was after I put her to bed and I got into the shower. I took a washcloth from the cabinet and hung it in the shower. I washed my hair then took the washcloth from the hook. At that point I noticed a hair bow hooked onto it. I was honestly freaked out.

The past few days Jessica and I have heard, seen, and done things that only the fewest can imagine. We heard doctors repeatedly tell us "your daughter is not going to make" not "it doesn't look good" or "we have little hope". We watched as our baby took her last breath in Jessica's arms and Friday we went to the mall to buy the dress she now wears, the only dress she will ever wear.

For those that wonder what goes through our minds when something like this happens, I will offer some insight. As we held her in her room at Children's the baby in the adjoining room was crying, Jessica said to me "we never got to hear Rebecca cry". I thought, we never will. Nor, will we watch her make a mess with her first birthday cake when Joanna does. Or, see her first dance recital, first day of school, and I won't give her away on her wedding day. There are hundreds more that we will forever be reminded as we see Joanna grow up. In case you didn't know, they were confirmed by DNA testing to be identical.

I don't tell you all of that seeking tears or emotions. I say it so I can follow it with this. Everyone credits us with the strength and faith that they could never see in themselves. 8 months ago you wouldn't have seen it in us either. It was given to us through prayer from a multitude of people literally from all over the world. We were chosen to conceive identical twin girls and from that point, place all of our trust in God. In doing that, he responded to those prayers every single day with the strength we needed. One of the songs in this video coming up says it best.

Psalm 121:1-2 says - I lift up my eyes to the hills - where does my help come from? My help comes from the Lord, the maker of heaven and earth.

Because we are a family that loves worship music and we have amazing friends that can pull off putting this together with just 2 days notice, after the following video that is what we are going to do. All of these musicians lead worship here at Bethel and most of them are dear friends of ours.

Please enjoy this video prepared by one of those friends. It captures ours fondest memories beautifully for us to cherish forever.

Rebecca Sue's Obituary

2010-06-11T16:14:00.003-05:00

Rebecca was born March 28, 2010 in Cincinnati, Ohio, along with her twin sister, Joanna. Rebecca Sue spent 74 days in Cincinnati Children’s Hospital and lost her courageous battle with a congenital heart defect on June 10, 2010. Rebecca is where we all live our whole lives longing to be..in the arms of our loving Savior. She was so special that He wanted her to receive her reward for a battle fought so bravely, the perfect home he had prepared for her. She is seeing things that we can't even imagine and hearing the choirs of angels that greeted her. We would like to express our gratitude to everyone who prayed with us during Rebecca Sue’s journey. She is survived by: Her parents, Brandon and Jessica (Patterson) Barnard of Evansville Her twin sister, Joanna and sisters, Kenlee, Katelyn, and Alexis Barnard, all at home, in Evansville
Grandparents, Kenny Patterson, Mary Patterson, and Kent and Chris Barnard, all of Evansville. Great Grandparents, Steve and Rose Castrale of Evansville, Leon and Dixie Barnard of Wayne City, IL and Lowell and Shirley Clifton of Wayne City, IL. Aunts and Uncles, Abby Patterson of Denver, CO, Josh Patterson of Evansville, Bryan (Ashley) Barnard, and cousin Deacon of Little Rock, AR and Brandi (Kendal) White of Desoto, IL. She was preceded in death by great grandparents, Opal Joy and William Kenneth Patterson.
Funeral Services will be held at 3 pm Sunday, June 13, 2010 at Bethel Temple Community Church, 4400 Lincoln, Ave., Evansville with Pastor Bret Nicholson officiating. Private burial will be at a later date.

Friends may call from 2 pm until 8 pm, Saturday, June 12, 2010 at Boone Funeral Home - East Chapel, 5330 Washington Ave., Evansville, IN

Memorial Contributions may be made to Ronald McDonald House Charities of the Ohio Valley, PO Box 5381, Evansville, IN 47716.

Surrendering Rebecca to God

2010-06-10T21:33:00.000-05:00

Our hearts break tonight to tell you that Rebecca has gone to be with Jesus. She passed away this evening in mommy's arms at 6:15pm est. Her condition continued to deteriorate this afternoon to a point that was irreversible. We were brought to a place where we had to let her go. Although the painful journey did not take us to the place we had hoped, we took it faithfully and accept God's destination. He not only brought the rain, he brought the worst storm anyone could imagine.

UC hospital NICU was kind enough to let us bring her to see her sister for a while before leaving for home. Jessica and I are on the road now bringing her to Evansville. We will post arrangements when they are made.

Thank you all so much for the neverending support. We will never forger it.

Thank you to Rebecca's nurses that showed her love and cared for her so much at Children's Hospital. You will always be remembered.

Still Fighting

2010-06-10T10:01:00.000-05:00

Things here for Rebecca overall have been at the same place really since Monday. A couple of changes that have happened are her blood gases have continued to worsen requiring her ventilator settings to be set to the maximum possible settings without damaging her lungs. The other thing is her lactate has gradually risen back from 4 to over 13 now. The good news is that her dialysis has been working well for a second day now and they increased her fill amount which is now taking off more fluid each time. It is now a race to get fluid off before it takes us further down. The problem is we are many laps down. If we start to get enough fluid off it should make it easier to ventilate her therefore reducing the settings. It actually affects everything that she is struggling with. Her glucose now seems to be under control with her insulin drip.

Two weeks ago when I came here for her procedure I had no idea that at the end of my vacation I would still be in a place that I would be faced with having to go back to work with everything still so uncertain. I must face that tonight as I have to be back to work tomorrow.

Our little Joanna is doing wonderful. Jessica just got back here from feeding her with her first bottle and she took it perfectly. She tried breastfeeding yesterday and it went pretty good also. It will take some time but she has started out great.

We have to say thank you again for all of the comments and emails that have been passed along during this. Honestly, when we feel weak and beat down, they fill us back up for our next challenge.

An update on the BBQ Sale....There is a Kentucky Distribution Site being planned for those in and around Henderson to pick their orders up in Henderson. Location and other details will be posted later. Click here for the original BBQ sale post http://barnardkids.blogspot.com/2010/05/thankfulness.html

The Toughest Decisions

2010-06-08T17:38:00.000-05:00

I know it has been some time since I have updated here. Jessica and I have been through the most difficult time of all of this the last couple of days. We have known for a few days that things didn't look good but we were reluctant to accept that it was the end. In the early morning Monday we got a phone call from Children's. As I have said many times before, not good. This time it was just to tell us that a nurse had stuck herself with a safety pin that was used to hold a tube in place and since it was in close proximity to the patient they had to get our consent to test Rebecca for HIV. Deep sigh of relief and go back to sleep. Later in the morning we were just getting up and the room phone at RMH rang. It was her nurse telling us that they were starting her on an insulin drip because her glucose was over 600. We still had pretty optimistic thoughts, we've heard worse news than that before. That was until yesterday around noon. I came to Rebecca's room first thing and Jessica went to Joanna's because we knew she was supposed to be start breastfeeding. The whole time she wasn't here with me I was uncomfortable and eager for her to get here. Rebecca's blood pressure was very low and her O2 sats were pretty low also. Around noon she left UC and came here to Children's. I was filling her in on what was going on and it all kind of unfolded from there. They had just done a blood gas and the nurse came back and said it was very ugly. The blood gas tells several things, Carbon Dioxide, Oxygen, PH and lactate. Her Carbon Dioxide was 90 which wasn't the worse because she was 130 in the RCNIC before they put her on the oscillator. The most shocking number was the lactate which is overall indicator of how her body is doing. She has recently been in the 3-5 range and this time it was around 11. We were told this was an indication that things were probably deteriorating faster than we could compensate for. Again, we go to our consult room with our nurse and the attending doctor. Were given the options and probable outcomes. At that point we decided to leave things as they were but not take anything away from her. This was the toughest decision so far we have had to make. We went back to her room and decided we were going to hold her. I held her first since mommy did yesterday. As we held her throughout the afternoon, we watched her heart rate fall into the 70's. Oddly, we watched some other things also. Her O2 sats went up to the 80's and 90's and her blood pressure increase. The natural reaction was to think she was doing better. When we asked the doctors about it they rationalized it as the body compensating and reacting to the change and just part of the process. We still were uneasy with our decision. We talked with Dr. Nelson the head of cardiology about what we were seeing and the process that parents go through in letting go. He reassured us that if it was his child he would do the same thing and that there were worse things than dying. We talked about faith and God and found out he is a believer and has prayed for Rebecca. I asked how a doctor can separate their medical expertise and faith, where they draw the line. He said he believes in miracles and has seen miracles, but he thought if God was going to work a miracle in Rebecca he would have done it before now. He also reassured us that if we wanted to change our mind they would completely support us. Jessica and I struggled with this and prayed for a sign one way or the other. We prayed for an undeniable sign that would leave us no question. Last night we got an adult bed in her room and moved her to it and took turns sleeping with her. Through the night she continued to be stable with her low heart rate and good blood pressure and O2 sats. At 10:00 last night they did another blood gas and it was around 4. According to our nurse, this is unheard of. She has never seen a kid with a lactate over 8 ever come back, especially on their own with no intervention. Throughout the day today she has been in the 5-6 range and her other levels have been manageable. After the blood gas we got last night we decided that was our sign, so this morning we talked to the doctor and told her we wanted to get her dialysis going and we wanted an echo. We wanted to know if her heart has worsened, gotten better or was unchanged. She, like the doctor yesterday downplayed another echo as if it would be uncomfortable for her and they wouldn't do anything with the information. They agreed to get dialysis going again and had this working by early afternoon. They also showed up this afternoon to do an echo to our surprise. We just got the results from that and it showed the thickening was unchanged but the squeeze function of the heart was less, which is not good. Our doctor that we really like just came on tonight until morning. He is the one that was here when she came to this unit 3 weeks ago tonight. We have had to make the toughest decisions we will probably ever have to make and most likely will have to make more. We ask for God's guidance in those decisions that they will be the right ones.

Faith in Darkness

2010-06-06T11:36:00.000-05:00

Making a decision to keep your child alive when they have been through so much and are in such poor condition without a single doctor believing there is a chance is a test of faith and really a test of so much more. It is a little easier when the child is opening their eyes and looking at you when the doctor is telling you there is no light at the end of the tunnel. Is she trying to tell you she's still fighting, don't give up on her now or that she's had enough and just let her go? Our hearts are telling us if God wants her he will have to take her, we will not give her so easily. We know his power can perform miracles against the greatest of odds. We don't know how many miracles he will continue to show us.

After the last couple of days I decided I needed to call Jessica last night and give her the situation in case she wanted to come back a little earlier. So after a long day at Holiday World yesterday she made the trip back to Cincinnati. This morning when we got to Rebecca's room her doctor gave us the same briefing that he gave me yesterday. He said they really are just doing things to her and not for her. They are basically just chasing their tails with fluid and blood pressure. She is not getting any better, kidneys and liver are shot and has same infection in her ET tube as before but worse. Her nurse gave us the option of holding her if we wanted. They told us she may not tolerate it and could make things turn quickly. They also told us if we wanted to let her go they would completely support us in that decision, but are completely leaving it up to us. We decided Jessica was going to hold her but we just couldn't let her go, not while she's looking us in the eye. She has only opened her eyes a couple of days in the past 2 or 3 weeks. So, Jessica is holding her now and she is doing fine. We have had a visit from the chaplain and have prayed numerous times. The doctors may think were crazy but we will not live with regret or wonder if giving up was the right decision. What if we had given up on Joanna during the pregnancy and terminated her to try to save Rebecca? Only we can make those decisions the best we can as we go along. God has a plan and we will try our best to not intervene.

Puzzled Cardiologists

2010-06-04T10:04:00.000-05:00

Rebecca has cardiologists scratching their heads here. From her echo Wednesday they are puzzled as to why her cardiac ventricles continue to thicken, therefore shrinking the chamber size. The attending on this week said he has never seen such rapidly thickening. Yesterday morning he and another cardiologist went back and reviewed all 20 prior echocardiograms back to her date of birth. They were just stepping back and looking at everything as a whole to see if they could notice anything. They notice the biggest difference in mid May. Today they are going to do some more cultures, and get genetics involved to see if there is anything that has been overlooked. With her ventricles thickened and chamber smaller the blood backs up in to the atrium. If it can't get into the atrium it backs up in the vessels and stays in the body causing the swelling. They continue to remove the fluid with dialysis which sometimes works and sometimes doesn't. Because of the inconsistency of the dialysis they are still considering a surgically placed PD catheter. They have had to back off on the amount they are taking off of her because of the small ventricular chamber. If they remove too much the chamber cannot fill like it needs to and her blood pressure suffers. Now they are just trying to take off as much as they are putting in. Yesterday and overnight she had to get several rounds of blood and other fluids to help her blood pressure. This may be partly because they stopped her epinephrine. They are doing a head and kidney ultrasound right now to make sure all of the blood and fluids they are having to give her are not going somewhere they shouldn't. At this point I would say she's hanging in there. She's obviously a fighter like her twin so we know she can do it.

We met my mom near Louisville yesterday morning so Jessica could go home for the recital tonight. Ashley, Deacon, Katelyn and Kenlee all came along with her. Our rendezvous point was Dairy Queen in New Albany. We managed to avoid the ice cream... sort of. When I got back to Cincinnati I met Jessica's cousin Joey that came down from Indy for the day to visit. We both pulled into the RMH at the exact time, which was kinda weird.

Little improvements

2010-06-02T12:29:00.001-05:00

Little Rebecca continues to get rid of her excess fluid through dialysis. There are still some problems with this process but it is working ok for now. Although they aren't doing much right now there seems to be a lot happening today. They gave her a dose of lasix this morning to see if her kidneys were ready to work a little. She has had a little urine output, we didn't expect a lot yet. Her doctor is waiting to talk to the surgeon so see what they want to do about the PD catheter. They may choose to replace it again like they did Friday or they may choose to put a different one in a new location. Most likely they will replace the current one since that worked last time. They just stopped in to do an echo to check a couple of things. They will see if her ductus has closed completely yet and see if her thickening of the heart muscle is going down any. After the echo they will make a determination if she can start to receive some milk through a feeding tube again. It would be a very little amount, 1ml per hour. They continue to wean her vent settings, exciting us to get her extubated but know it may still be a while. One of the cardiologists pointed out today that she didn't get this way overnight and wouldn't get better overnight. Doctors are very cautious to show us any optimism, so we create it ourselves. They all say virtually any set back would be hard to manage in her condition. Out of curiosity, I asked her nurse to see how many X-rays and blood transfusions she has had. The tally blew me away with 93 X-rays and 28 blood transfusions to date.

Since our pathology report of the placenta was inconclusive, both of the twins have had DNA samples sent to the lab to determine if they are identical or not. We should have the results in a couple of weeks.

Joanna continues to pack on the ounces. Last night she weighed 4# 15oz. With this trend she is sure to weigh 5# now as I am typing this. Unbelievable since she was 1# 10oz. just 2 months ago. She has been experimenting with breast feeding but will need some more time to get the mechanics figured out. She got her 2 month immunizations a few days ago which she didn't really care for. It had been a while since she had an encounter with a needle. It is the most wonderful thing to go see her and hear her just grunt and make noises. With each day she is becoming her own self and developing her own personality.

Since I flew here and we only have 1 vehicle here now, I will take Jessica to Louisville in the morning to meet my mom and the girls so Jessica can go home for a few days. This way I will get to see them for just a bit too. Friday night is Katelyn's big dance recital and Thursday night is the rehearsal. It's a big weekend that I will unfortunately have to miss.

Jessica was able to make it to her hair appointment last night she scheduled here a couple of weeks ago. She made one of those drastic changes this time with a short hair cut. She had been wanting this style for a while. We actually got pictures of a hostess at a restaurant Sunday to copy from. We both really like it, and yes I told her that.

When I was home last I got this picture of Katelyn and Kenlee. Every time I looked at it I just kept thinking of an album cover, so I emailed it to a friend of mine because I knew he would think of something clever to do with it. Thanks, Jeremy Secrest for your imagination and creativity.

Still Going Good

2010-05-31T18:39:00.000-05:00

Things are going well for Rebecca again today. Most importantly she has continued to stay in the correct rhythm and is taking off fluid. For the 24 hour period ending at 6am this morning she had lost 71ml more than she has taken in. She has had a couple of her meds turned off today. One of them was because her heart rate got kind of low so they turned off one of her sedative meds and it came back up. The other one was one of her meds controlling her blood vessel dilation. They turned it down this morning and she tolerated it well so they turned it off this afternoon. Her blood tests have also been looking good throughout the day. Her doctor reminded us that she is very very sick and has a long way to go. Infection is the thing now we have to keep away. An infection now would be devastating to her. She is still on the 3 antibiotics which would hopefully fight any infection. They also started her on a fungal medicine because she has a lot of skin moisture and didn't want that to develop into anything. Yesterday in addition to having her chest tube removed, they took out her pacemaker wire and her NJ feeding tube out of her nose. Just a couple more encouraging moves. Taking things out of her body is much better than adding more.

Thanks to our visitors that chose to take their day off and spend it travelling to Cincinnati and hanging with us for a while. Jessica's brother came in last night and my brother and his wife, and our friends Drew and Jessica and their little boy Mason came to see the twins.

Here is a pic for AT&T if we just had Rebecca and Joanna in it

Joanna smiling while uncle Josh was holding her

Rebecca getting her CT Scan on Friday

Praise God!

2010-05-30T08:34:00.000-05:00

We wanted to get this out so everyone could rejoice with us. If you haven't read the last blog you may not know what this means, but she has been in normal sinus rhythm since 2:45 this morning. You cannot imagine how good this news is. Again, it is one of those things that we take for granted on a daily basis but when it isn't working like it should it is very concerning. Last night around 11:00 when they did night rounds the doctor chose to remove the medicine that was supposed to be helping her rhythm because they thought is was just suppressing her heart rate and not actually correcting the rhythm. During the night her nurse warmed her a little and she also had to receive blood. It is not known which of those if any helped get her into a sinus rhythm. Also, her dialysis is working great with one minor hiccup overnight where the tubing was kinked and wasn't flowing. She is taking off more fluid now than she is getting. We left for 15 minutes this morning to go get something to eat and while we were gone they did rounds on her. They removed her chest tube on the spot. It was in place since her procedure but wasn't needed any longer. Also, they took her off lasix since she his getting rid of most of her fluid by dialysis. She has a little urine output but it is minimized by the help of dialysis. They also decided to cycle her dialysis ever 45 minutes rather than hourly to increase her fluid removal. They just replaced her IV pump tree and she actually got rid of about 4 IV pumps. All of these are very encouraging signs of improvement. God is revealing his healing power and answer to all of our prayers.

A few positives

2010-05-29T19:08:00.000-05:00

We have some things to be happy about today so I am going to go ahead and blog about it. Jessica and I both stayed here with Rebecca last night as we will tonight. Jessica in a room down the hall in a bed and me in Rebecca's room on a chair. It was another night of little sleep, not because anything was necessarily wrong but just the anxiety and fear to go to sleep. We were both up around 5:00 because we thought the plan from the night before was to run the medication for 12 hours and pace along with it then we would have to come up with a new plan. Nothing really happened in the morning. The doctors would come in and look at her but never seemed worried about the pacemaker or her medication. They rounded on her later in the morning and went through everything because there was a new fellow coming on shift. The surgeon was at rounds but it was decided since they were able to take fluid off by syringe successfully all night they would not put another dialysis catheter in. They were going to try to hook her back up to the automatic fill/drain method instead of using syringes which is a huge infection risk because the have to break into the line every time to fill and then drain every hour. This time the attending from nephrology was at rounds I think because there has been some frustrations with the clowns they have been sending down. By late morning they had not shown up to hook their lines back up so expressed my concerns over the last few days where we just keep waiting on nephrology to show up. Our nurse also made a phone call and the fellow from the night before came down again but this time with the attending doctor. This time they got it all hooked up and it filled successfully and then drained successfully. So, after the syringe method all night and morning then the correct way this afternoon she has still taken in more fluid than gotten rid of but tons better than getting nothing off. I think she is +55ml at this point today and yesterday she was nearly 200+. She is taking in 10ml per hour of fluids and meds and giving off about the same now finally. The hope is to start increasing the amount they fill with, therefore increasing the amount they are able to collect and drain. We would like to be even today or possibly tomorrow then start being negative.

Around noon we were tired of wondering so we asked the fellow and attending doctors what the "plan" was. We thought they were going to stop the medicine if they didn't see any signs of improvement and we knew the risk of prolonged pacemaker use. They said they talked to Dr. Nelson and he said they could go up from 10 to 20 on the medication for 12 hours and see what happened. If still no change they could go to 30 which would be at midnight. If no change after 12 hours of that dosage they would stop it. With the increased dosage there was increased risk of other arrhythmias or even cardiac arrest. This is another one of those moments you don't know the answer you just go with your gut. We decided to increase to 20 and see. Since she had shown some positive signs like urinating and getting some fluid off we knew we had to keep trying. The pacemaker was likely already doing damage but just a few more hours may be all she needs.

Early this afternoon they did a quick echocardiogram to check and see if the ductus had closed any more. It was about the same as Thursday. At 2:30 I stepped out for lunch just as the new fellow showed up to re-tape her pacing lead that is in her nose. Before I left I asked him how often they were going to turn off the pacemaker to check her actual rhythm. He said maybe every 8 hours. I responded abruptly with, "what". He said then said they could do more often and it wouldn't hurt, which I already knew. I asked him to do it now. If her heart could sustain a comfortable rate and blood pressure, even if the rhythm wasn't 100% sinus (correct) it would be better than having the probes doing more damage to her esophagus. We were told this morning again that this type of pacing hasn't really been used for prolonged (>24 hours) so they don't have data on when the damage begins and how bad it gets. We just know she couldn't survive without it. When I got back from lunch they were still messing with the pacing lead in her nose. It got out of place and they couldn't get it to "capture". I don't know what that means but it wasn't pacing correctly. I just sort of convinced him to turn it off and see what she would do. Now, 5 1/2 hours later she is still off of the pacemaker. She's hovering at the minimum acceptable blood pressure and heart rate of 100, but is managing ok. They could have to turn it back on, but any break from it is that much less damage it is doing.

As I was eating lunch in the family room I sat near another family that was arranging a chaplain to administer last rights to their child. I don't know the circumstances or what medical challenges they face, but all I could think is that their baby was still alive, why were they thinking about last rights? There is time for that if and when they pass. We have discussed absolutely zero plans about if Rebecca wouldn't make it because that is not our focus. There may be a time for that but it is not now. Jessica and her mom are now over visiting with Joanna. Poor girl is getting neglected the last few days/weeks. We hope if she notices that she understands her sister needs us right now. We love "Our God" and that has become our song in these days. It is Chris Tomlin's newest song. There have been 3 times it has come on the radio here in Rebecca's room that have been at just the right moment.

Near the Crossroad

2010-05-28T23:46:00.001-05:00

I want to warn you, trying to recap today and make sense of it is not easy to do. Things may have not came out in order so bear with me.
Jessica allowed me to sleep in a little this morning to catch up from my sleepless night the night before. When we left Rebecca last night her sats were in the 90's. When Jessica arrived this morning they were in the 80's. An echo was done and it showed that the ductus had begun closing, which was what we wanted to happen. She was adapting to this very well with good saturations in the 80's. So, the first of 3 problems seems to be working well. She drained nothing during the day because something was wrong with the dialysis catheter. The people from nephrology came to work on it but couldn't get anything to drain, only to go in. This obviously wasn't good. It kind of got put off the rest of the day for a couple of reasons. One reason was Dr. Nelson wanted to get a CT scan of her brain to see if there was any bleeding or damage. He said this may be helpful in making decisions on how much more to help her. What he was saying was if she showed bleeding or signs of damage we may not want to do much else to intervene and start letting her go. The CT scan was ordered around 1:00 and they brought a mobile one to her bedside in less than 20 minutes. The scan took only a couple of minutes but we waited until around 5:00 to find out that she had nothing concerning going on with her brain. This left several options open for treating her,,,, we thought. After these results he was able to talk to the surgeon to get his opinion on placing pacing wires on her heart. The surgeon told Dr. Nelson that she couldn't handle this procedure. They would go back into her incision in her chest to do it but the problem is when he was stitching her heart together after her last procedure the sutures basically exploded back open because her tissue was so weak. They described it as like a kleenex. He had to put a ton of sutures in to get it to hold together. So, he was not comfortable in doing another procedure to place pacing probes. They decided to put her on yet another medication that is sometimes helpful in correcting the rhythm problem. They were going to do this along with continuing the esophagus pacing for 12 hours. The other reason her dialysis got put off was because Dr. Nelson was hoping the surgeon could work on it when he was finished with his other surgeries but he was too exhausted. He agreed to do it first thing in the morning.

At 7:00, several people had converged outside of Rebecca's room. There were liver and kidney people plus all of the doctors and a surgeon from cardiology. The liver doctors came in and explained to me that her liver was critically ill based on numbers from blood tests. There is nothing they can do to make it better it is all dependent on the rest of her getting better. Then Rebecca's nurse told me the doctors would like Jessica to come back (she was at UC with my parents and sister seeing Joanna) to meet about a plan. We both just thought this was to tell us they were going to fix the dialysis tube and get her to surgery to place pacing probes directly on her heart through her incision (we hadn't found out this wasn't an option yet). We quickly found out this was not the topic of discussion. The head of cardiology, attending cardiologist and since it was shift change, both day and night nurses were in this meeting with us. He explained to us that they were really to the end of what options they had for her. He thought they could still possibly do something to correct the dialysis catheter to get some fluid off. He also wanted to get our feelings on when was too much as far as medicating her to maintain blood pressures and such. He told us most of the team was questioning when we were going to stop and that enough was enough. He said he and the attending both were kind of the outcasts and have a little hope left and were willing to keep trying the limited options that were left.

I asked why this certain surgeon was the one that had to do this catheter in the morning. Wasn't there another doctor that could just move this one a little to see if it corrected the drain problem. That is all that happened last time is they twisted it a little and pulled it back and it started working. Dr. Nelson said yeah ok we can check if there is a general surgeon that can do that. Apparently there wasn't, so at 8:00 Dr. Nelson decided to try to correct the catheter himself. He put a wire in the original one and removed the tube, then fed a new tube back in over the wire. They were able to put fluid in and take back out easily. We thought this was the solution but nephrology came to hook her up to dialysis and the fluid wouldn't feed in or out by gravity but worked fine by syringe. They decided to just put it on drain overnight and let out whatever wanted to drain by gravity.

Around 10:00 I decided I was going to see Joanna for a little while since it was her birthday - Happy 2 Months. Jessica decided to go with me then I dropped her off back here at Children's while I went to RMH to get us a few things to stay the night with Rebecca. We got a sleep room with an actual bed just down the hall that one of us or maybe alternating will stay in. When we got back from UC they had decided to manually do the dialysis with syringe instead of just doing nothing overnight. So, every hour or so they will put 20cc in the catheter then let it set before pulling it back off with additional cc's. So far they are getting more off than they are putting in. This is great but it's a big mountain to climb, hopefully it will get us until the surgeon can place a larger tube in a few hours.

It's in God's Hands

2010-05-27T17:28:00.001-05:00

Here is the complete rundown from yesterday morning.

Jessica called me yesterday morning about 10:30 and told me they were scheduling a special meeting at 1:00 ET to discuss a plan for Rebecca since they have had her for a week and there has been no improvement. She called me after the meeting about 2:15 ET and we talked with the doctor on speakerphone. She explained to us that all of the team in the meeting was in agreement that they needed to do her procedure sooner than later. Although it was very risky, they thought it was more risk to do nothing. Looking at the schedule for the surgeons and team, they would need to do it that afternoon or it wouldn't be until after the weekend and they didn't know if she would make it that long. We agreed to go ahead with that plan. I was at work at the time so I immediately left and headed home to pack. On the way, I called a friend of mine with connections to pilots and airplanes. I don't know if they would want me posting their information so I will just say thank you to the owner of this plane and the pilot that flew me there. By the time we left, flew 1 hour and got a ride from another special person from the airport to Children's, it was about 2 1/2 hours. Again, not much time savings but it meant the difference in getting to see Rebecca before she went to the OR. Also, I missed any potential traffic issue and the temptation to drive 100 mph. So I got to her room literally just in time to say a quick prayer and kiss her goodbye. The nurse actually got smart with the doctor because he didn't want to wait just a few more minutes for me to arrive. We went with her down the hall and told her we loved her again and she went in around 6:30. The next 2 hours we waited in a family lounge and talked with some other parents which helped keep our minds off of the time. They called us a couple of times with updates. They brought her back to her room around 9:30 to do a handoff to the nurses. This time we used to eat some lunch/dinner. The surgery went very well, they cut her chest open by about 1" to visualize the heart to place the catheter. They placed a 3mm catheter first followed by a 6mm one just to do it in 2 steps. Back in her room she was pretty stable the whole night only having to get blood a few times and some other fluids. I stayed the night here in the room with her while Jessica went to RMH to get some good rest. I got none.

This morning they started battling some low blood pressure and minor desats. We were told that now we just have to wait for her heart to get used to it's new plumbing. Part of her heart just below the valve they opened is thickened from the extra workload of pumping against a closed valve. This thickening is what is now limiting her flow from being excellent through her newly opened valve. It is much improved from zero flow but may not be adequate when they turn off the prostaglandins.

Jessica got here mid morning so I caught her up on everything. About 12:30 I decided to go to RMH to get a little nap. I wasn't there 10 minutes and she texted me that I needed to come back. She was having issues with her heart. I came right back to find that she had developed an intermittent rhythm where her right atrium and ventricle were contracting at the same time called JET. When this happens her blood pressure drops and she desaturates. She did this for a couple of hours until they decided to do something because it was getting worse. The first thing they did was to cool her by dropping the room temp and by putting a cooling blanket under her. Rather than wait they also gave her another medicine that the doctor said she has seen make kids go into cardiac arrest. The head cardiologist was sick but came in at the request of the attending doctor. They chose to give the medicine. It had no adverse effects but also didn't control the rhythm. At that point we didn't know if that was the last option or not. It almost seems like there is always another option. This time it was to stick something else in her. Oh yeah with the cooling blanket you get a constant rectal thermometer. So this time she was getting a pacing catheter placed in her nostril down through her esophagus which lies right beside her heart so they can control her rhythm manually. This went very smoothly just like a feeding tube. Then they set some numbers and made her heart pump beautifully. With this being controlled they decided to turn off her prostaglandins which she has been on since birth to keep her PDA valve open. Now that she has had her procedure she shouldn't need it open anymore. Here's where the problem is. When her PDA closes the new opening may not be big enough to get enough blood flow to the lungs. Then she may turn blue and downhill from there. The other potential problem is that they can only leave that pacing catheter in for a couple of days or it will damage the esophagus. They think her heart rhythm problem is a result of the surgeon going through her ventricle to place the catheter and it is irritated. If that's the case they think it should self correct soon.

So here is what has to happen for a good outcome. The PDA (ductus valve) will need to close as soon as possible but there is no definite time that will happen. Her heart rhythm will have to correct itself within a couple of days before they have to remove the catheter. And when the ductus closes she will have to have enough blood flow through her ballooned valve to her lungs to oxygenate her whole body. If not, her sats will be very low and she could turn blue. There are some options to those scenarios but not good ones. Her kidneys and liver have suffered and are damaged but could be reversible if everything else starts working. She has had no urine output since before her surgery but the dialysis has been working well today.

She is in a very vulnerable state but the doctor still has hope and is clear to point out she may not make it. We're getting used to hearing that though. Very aware of her condition we place our trust in our Father and his plan. We don't know how much rougher this road will get before we reach our destination but we're holding on tight. Many of you have prayed the same prayer tirelessly over and over. God has listened and answered so far, why would he stop now?

Rebecca's Surgery Complete

2010-05-26T23:02:00.003-05:00

I will give more detail when possible, but her surgery was successful. They opened her chest by about 1" to insert the catheter into heart. She did very well with no problems. She is back in her room now and doing fine. They warned us the next few hours will be rocky with her body adjusting to the change in her plumbing and the stress of surgery. Her right ventricle is thick because the muscle is enlarged. We will have to see if that is going to cause any problems when they turn off her prostaglandins that has been keeping her other valve open. Our God is higher than any other! He continues to answer prayer and bless us with miracles. Just wanted to get this out. Will post complete chain of events from today later.

Rebecca to surgery

2010-05-26T17:43:00.000-05:00

It was decided at a meeting this afternoon to do her surgery today. I will elaborate more later. I made it here just in time to see her go to the OR. Please pray like you never have before. This is a very risky procedure but has to be done. God please protect our baby.

Lots going on...

2010-05-25T23:04:00.000-05:00

First let's start with another answered prayer. Joanna had a head ultrasound to follow up on the two level 2 brain bleeds and the dilated ventricles (risk of PVL). Praise God both bleeds are completely gone and the ventricles are normal size. God is so amazing!!

Joanna got her first tub bath last night. After the initial shock - she loved it.

She also broke the 4 lb mark!!

She is continuing to do well on the nasal cannula and if all goes well tomorrow morning in dr rounds, they will be moving her down to 3 liters. I am so excited. If I haven't mentioned it before, we can begin trying to breastfeed when she gets down to 2 liters!! Here are a few sweet pictures of our angel.

Rebecca had lots going on today. First the catheter for the dialysis was placed today at 8am. In addition to what Brandon wrote this morning the drain was not draining. They pushed 20 ml into her belly and expected it to drain out but nothing came. They then pushed an additional 10 ml in with a syringe was going to pull it back out but instead got resistance. They did an xray and found that placement was good (it was not up against a stomach wall). Another physician pulled the cath out a small bit and turned it and then it began draining!! According to her nurse tonight she is tolerating the dialysis well. Because the surgeon putting the cath in thought he may have hit the cyst, they ordered an ultrasound. It showed that the cyst is 1 cm X

1 cm smaller than before. This may be because he punctured it - not sure but good news is that it is smaller.

There is a level (lactade) that is checked on Rebecca that shows if her body is stressed. The smaller the number the better. She has been running around 3 but this afternoon she jumped up to over 7. The attending physician didn't believe the number so she had them pull additional blood to test the level again and it was the same. She then ordered them to pull additional blood an hour later to check it again and again it was the same. After evening dr rounds, they decided to give her some blood in case when she was having her cath put in her heart became stressed because she did lose some blood during that process. Soon after the blood began they pulled the lactade and it was down to 5 and then after the blood was all in they ran the lactade again and it was back down in the 3 range.

Rebecca and I had a good day today. We listed to the local Christian radio station and I read her a children's book. I sit by her side all day and talk to her about her sisters, the weather, what the nurses are getting ready to do, etc. I want her to know that her mommy is there with her. I also fill her with positive thoughts. I know she hears the drs come in and tell me what is wrong with her but I don't want her to think they are right. I tell her she will be fine because her and her sister are fighters and that God will heal them.

As Brandon said in the previous blog, we had a great time with our kids Sunday. Here are some pictures of them with the girls. It was so precious...Kenlee was waving to Rebecca and saying, "Hi Becca Sue!", she was so excited to see her; Katelyn was holding Joanna and patting the blanket saying, "Joanna, are you going to look at me!"; and Alexis just staring at Joanna as she held her and having Joanna hold on to her finger - all of these were precious moments we will never forget.

Update on Rebecca

2010-05-25T13:59:00.000-05:00

The procedure part went ok this morning, but the results of it are not clear yet. The first attempt, the surgeon thinks he hit the cyst because a discolored fluid was drained. So, he tried a second time and went into the stomach. There was some blood in the stomach but they aren't too concerned, it may be a result of her blood not clotting well. Later, they came and put 20 ml of fluid into the catheter but nothing drained. Then they added another 10 and still nothing drained and they couldn't pull anything back. They thought maybe it was because the tube was up against the wall of the stomach, so they did an X-ray and found that is located in the correct place. The doctors are again scratching their heads to come up with a reason and plan. Keep in mind I am getting this from Jessica then trying to put it into my words so forgive me if I end up correcting some information later. She said in the last couple of hours her urine has cleared up and not bloody which is great. The kidney doctors said when looking at her chart they don't think her kidneys have been right since birth. We don't know what that means yet it may be not be that concerning since she has been urinating fine until recently. I will keep it at that for now until we get more definite answers or solutions. Rebecca is doing fine through and after the procedure. We are also awaiting Joanna's follow up eye exams and head ultrasound today. Will update later this evening. Thank you for keeping Rebecca in your prayers it has been a rough few days.

Rebecca Needs Prayer

2010-05-24T16:19:00.003-05:00

On March 31, I blogged that Joanna needed your prayers. Now Rebecca finds herself in that position as well so I ask the same for her. When looking back at the last 7 days that she has been in the CICU, the doctors haven't seen the results that they had hoped for. Their plan was to get her past her infection and be in a place to have her procedure in the next few days. Instead she is still full of fluid and they can't get it off her like they want. Her urine has turned to pretty much blood. They have backed off on the lasix to give her kidneys a break. There have been kidney teams and liver teams in to see her today. They are going to take some blood to do some tests on her liver later today. They have also decided to put her on Peritoneal Dialysis to help get rid of some of her fluid and are doing that in the morning. The amount of fluid she has is beginning to take its toll on her organs. The cardiologists have scheduled a special meeting to discuss their options for her procedure. Ideally, they would wait until she was back to herself but she may never get there without the procedure. It's a catch 22 so they may elect to go ahead with the procedure soon.

Now for some happy and funny news.

First, all three girls came with Jessica to Cincinnati yesterday to visit. Alexis and Katelyn got to hold Joanna so that was cool. Kenlee got to see both Rebecca and Joanna for the first time which was special too. The visits were very short because they hadn't had naps and were a little uncontrollable. Children's Hospital is very accommodating to families with children there. They have Child Life staff that is their job to help families in any way they can. All of us were able to be in Rebecca's room at the same time to visit and get a picture together. University Hospital is a different story. They have a strict 2 visitor at bedside limit. It really sucks because Jessica and I can't both be there with a visitor, not even our other children. We have dealt with the rule until yesterday. I asked if we could all go back for 10 seconds to get a picture. The nurse in charge was apparently an enforcer because she wouldn't let us. So, one at a time, I took Alexis, Katelyn and Kenlee back to visit. Then Jessica did the same. They said if one of the other families saw us then they would want to. I guess they wouldn't have been able to see it was just for a picture. Anyway, there will be a complaint or suggestion coming. We then went to Ronald McDonald where we played outside and ordered pizza. The time flew by so they got quick baths and we headed home about 7:00. Alexis' last day of school is Thursday and wanted to know if she could go back that day when she gets out.

Joanna continues to do very well on her cannula at 4 L/min.

Jessica wanted me to tell you about her breast milk experience this morning. Somehow, she managed to throw 10 bottles into the dumpster at Ronald McDonald when she threw the trash out. She places a very high value on breast milk in case you didn't know. So, she went in and asked them if she could get a ladder so she could go dumpster diving. A guy there brought out a ladder on a golf cart and went in for the retrieval.

Knowing Urine Love

2010-05-22T23:41:00.000-05:00

That's right, I've never been so happy about or followed so closely how much someone has pee'd. The first 16 hours today Rebecca has output 50 ml's more fluid than she has taken in. This is what it is going to take to get her swelling down. The doctor told me this morning that he wouldn't be surprised though if she begins to show that they are pushing her too much and they have to back off on the lasix and diuretics. So far though all of her numbers are looking great. She has desat episodes occasionally, but is usually corrected easily by suctioning and increasing her oxygen temporarily.

Joanna had a ~~little~~ big accomplishment today. She got her high flow nasal cannula lowered to 4 liters/minute from 5. The goal is to lower her 1 every few days. When she gets to 2, she can begin trying to eat from a bottle and eventually from the source of milk, if you know what I mean. I gave her a bath for the first time tonight. It was just a wipe down with a wet rag in her bed but it counts for me. It's great to actually start handling her like a baby some instead of feeling like she was untouchable. Her weight tonight was 3# 14 oz. With her rapidly approaching 4#, I expect her to be at the same weight as Rebecca in the next week or two. Rebecca weighs roughly 7# right now but they are dosing her medications at about 4 1/2# which means she has about 2 1/2# of fluid weight to lose.

I ran into a woman in the elevator today that made my situation seem pretty easy. Nothing more than a 10 second conversation and I found out she has been caring for someone in the CICU for 2 1/2 years. Although I am not happy to be in this situation, I am grateful for the the things I am learning and the people I am meeting through it. Tons of people just like you and I, mostly unnoticed at least by me, go through far worse life happenings than I, and I hope this little nudge will leave me a little more appreciative and empathetic.

Little Changes, Good Story

2010-05-21T22:40:00.000-05:00

Thankfully, there are no bad reports to make today. I'll start with Joanna today since Rebecca has been getting most of the attention. No real changes with her other than she seems to have started very minor desats during and soon after eating. They say this is a result of reflux sometimes. It usually only goes down into the 80's and sometimes high 70's but almost always comes back quickly on her own. Jessica has set a goal in her mind of July 1 for her to get out of NICU. I would say come home but we don't know yet if that will happen or if she will be staying in Cincinnati until Rebecca comes home. That's one of those logistical things that will just somehow work itself out.

Rebecca has gotten rid of very little fluid throughout the day so they are increasing her diuretic from every 8 hours to every 6. It sounds like there is an order of things that have to happen for her to get better. First her infection has to be weakened enough that her medicine will work to keep her fluid in her vessels instead of leaking into her tissue. Then the fluid can be carried to the kidneys to be taken care of. When the fluid decreases her lungs and heart will be able to operate more efficiently. All of that considered, by the end of next week she will have completed her 14 day antibiotics, all of her excess fluid should be gone and she should be in a condition to have her procedure done. That is everyone's goal. She has had a couple more of the desat issues today but nothing as severe as yesterday. The first time she just got irritated when they took her temperature and they said she clamped down and that is what dropped everything.

Jessica left this afternoon and traveled through some major storms around Louisville. She just made it home and has a fun weekend planned with the girls. The most fun will be Sunday when she brings them back to Cincinnati to see the twins. This time our plans are for Kenlee to get to see them also. We got pre-approval for this so it shouldn't be a problem with her age. Then I will take them back Sunday night when I go home.

I have to tell you about this story that Jessica passed along to me tonight. Granny Mary took Katelyn and Kenlee to the Holy Rosary Summer Social and they were walking around doing the summer social thing. They came across an unknown mother with her baby and of course the girls had to see, talk, try to touch you know all of that. Mary asked Kenlee if she thought the baby looked like Rebecca or Joanna. When Mary said that, the mother surprisingly said that she had been praying for those babies and following the blog. I don't know how many of those nameless people are out there praying for our babies, but I know we are sustained by those prayers so thank you.

As I am sitting here typing this, my Captain from work texted me and told me his mother passed away this evening. Please take a moment to pray for comfort for the Pauli family as well.

Seriously, what next?

2010-05-20T23:40:00.000-05:00

Another miracle yet again...yesterday Rebecca's nurse and the charge nurse were talking about how the unit had no available rooms on the unit. The charge nurse was actually contacting surgeons to see if any scheduled surgery's could be cancelled because the unit could not take any additional patients. Our nurse said that we should be glad that we got a room the night before. Thank God for the cardiologist who was following Rebecca in the RCNIC who just could not get rid of the feeling that Rebecca needed to be transfered to CICU. It had to be the Holy Spirit tugging at his heart that Rebecca had to go to the CICU on that specific day at that specific time.

One of my favorite moments up here so far was last night when Brandon and I went to see Joanna. It was time for her to eat so we usually hold her while she gets her food. She is always so awake so Brandon and I decided to have some fun. We wanted Joanna to love music as our family does so we decided it was time for her to hear her first song. We thought it appropriate for her first song to be "What Faith Can Do". After enjoying her first song, we decided she needed to look at pictures and watch videos of her sisters. She had some great expressions through this time and Brandon and I were cracking up at her. It felt so good to go see her without worrying about her while we were there and truly having a good time visiting.

Now for today. When we got to Rebecca's room she had puffed up even more overnight instead of going down since starting her lasix drip. They decided to start her on another diuretic to get rid of some of the edema. She gained 500 grams or 1.1 pounds in 24 hours which was purely fluid. You cannot imagine how swollen she is. When they made this decision they said they didn't expect her to have negative fluid today only be less positive. This means her total volume intake of all fluids and meds minus her total urine output. She actually ended up being a little negative because she peed like crazy all day. We were very excited about this because in case I didn't mention it, she is very swollen. She looks pitiful. She had a blood test this morning that is used to gauge her degree of infection. It is called a CD64. on 5/13 her level was over 7 and today it was a little over 4 which means she looks to be getting over her infection.

This late afternoon proved to be a little more exciting than we had expected. First of all I must mention that Jessica's aunt Sue and her Castrale Grandparents came to visit today and also Chris, a friend from church to do some video and still photo work. Chris and I went to see Joanna first and he took lots of video of her doing her thing, sleeping and eating. When we left there we were talking about the "status" of Rebecca as we were headed over there. I told him she was stable, but only as stable as you can be 2 days after death being mentioned. I jokingly said we could walk in there and there be a bunch of people in there doing stuff. That didn't happen..... yet. We got to see Rebecca and she was doing just the same so he began his recording of her. Her nurse today was in training because she was kind of new to the CICU unit, so she had another nurse watching over her. She was telling us about how she was comfortable with pretty much everything except for when things crash quickly. We actually told her that wasn't going to happen in this room. Well Ms. Rebecca decided to put on a little show for Chris and defy us. He was in the corner camera rolling when she decided to desat a little down into the 70's. No big deal, the "mentor" nurse came in and asked if she needed any help and she said no, we were just suctioning her. Usually this is no problem and she comes right back. Not this time. This happened a few days ago too. Before we knew it, her sats were in the teens, her heart rate dropped, two respiratory nurses and a fellow came in and they were bagging her, putting a different suction down her tube into her lungs and trying to get her back up. It definitely got tense for a little bit, but Chris kept the camera rolling. We both kind of thought they would make him stop recording but they were a bit too occupied I guess. It was no time and she had recovered and back to normal. She had just accumulated a lot of thick mucus again that was clogging things up. Soon after that, we were told about an X-ray that she had gotten early this morning for her left leg. Seems there was concern Tuesday night about her leg being a little "floppy" around the ankle and there was some bruising. X-ray revealed a fractured tibia (larger of the 2 lower leg bones). I was immediately concerned about when and how this could have happened. We knew she was susceptible to fractures because of the medication she was on, but she had signs on her bed to handle her with care. None of the doctors or nurses could tell us what prompted this X-ray to be done. Did someone see something from another one of her X-rays of her chest, did someone mishandle her and suspected they fractured it by accident. We don't and probably won't know exactly what happened but we know the Fellow from Tuesday night ordered the X-ray because he thought her leg/ankle was floppy. It apparently isn't floppy from the fracture because X-ray shows it is not displaced. A couple of Orthopaedic Doctors were there to show us the X-rays and wrapped it in a cotton gauze-like wrap. They expect it to heal in a week or two with no problems. Just another day in our life of ups and downs. Jessica and I ended our night again with Joanna which is such a blessing to see that little angel growing and developing everyday. She was having some very minor desat issues tonight so we only held her for a little while then put her back into her bed to chill. Her nurse tonight was a new one for us. She has had Joanna before but it must have been a night we weren't there for her shift. We were showing her some pictures of the twins on blog when she saw the "The Twins" "followers". She said it was like the twins had disciples.

Looking Up Again

2010-05-19T22:20:00.001-05:00

Rebecca's night last night and today was stable. It is amazing to see how her numbers (blood pressure, o2 sats, heart rate) have improved since getting up to the CICU. It shows that she has been moved to a place that can better treat her with medications they have up here. You can tell that everyone knows what they are doing and really works as a team. She is on room air and sat's are in the mid 80's, heart rate is in the 150's, and blood pressures are better than they have been in weeks.

The physicians are still trying to put together the pieces to figure out what symptoms started first, illness symptoms or heart failure symptoms. We had one doctor this morning feeling that since her numbers have leveled out almost immediately after putting her on the medicines up here, that she is not sepsis but having heart failure. Then we have another doctor that still thinks she has an illness but still uncertain at this time what that illness is. The cardiologists will be talking to the surgeons to see when Rebecca is ready for her procedure. The cardiologist feels that she really needs to get her procedure soon because of her heart failure. That timing is somewhat dependent on her infection recovery. He was guessing maybe doing it in the next couple weeks. All of this seems good as we will hopefully be on the road to recovery but also very scary. I learned awhile ago that the procedure is not just a regular cardiac cath but something more complicated since she has both pulmonic stenosis and atresia.

At evening rounds they decided to continue the antibiotics because they still think she was/is infected with something. They are doing another blood test tomorrow that gives a pretty good indication if she is infected. The last one she had was the 13th and it was a pretty positive indication. They also decided to begin a lasix drip that will make Rebecca pee the tissue fluid out which will make her look much better.

Joanna is doing so well. They took her feeding tube out of her mouth and put it with the nasal cannula. You can now see her entire face. Here are some pictures we took tonight. Notice she has a dimple in her chin - just like her daddy!

Thank you all for the prayers. I am confident that we will pull through this and she will continue getting better. My sister-in-law shared this verse on her blog, "Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Matthew 11:24 I will not allow negative thoughts to enter my head. My girls will be coming home with me!!

Both grandmas came to visit the girls today and got to both hold Joanna for a while. They of course loved the experience. They also hauled a ton of breast milk back home like a couple of moonshine bootleggers, hidden in coolers in the back of the vehicle. I forgot to tell the guys at the station, that is what my mom has been using to make those cookies we love so much! - (Brandon)

Skimming the Tree Tops

2010-05-18T23:52:00.000-05:00

There was so much that happened today I will never be able to regurgitate it all but I'll try. It started when Jessica called me while I was mowing the yard first thing this morning. She was crying and I couldn't understand what she was saying. Eventually I got that she was scared and the doctors kept referring to Rebecca as "a baby this sick". I knew it was time for me to get to Cincinnati. She soon called back and told me they were moving her to the cardiac ICU. There she will be able to be monitored better for her heart. From what I understand, the cardiologist that has been following her pretty much demanded she be moved. I quickly got cleaned up, packed my bags and left town. The 3 hour drive between Evansville and Cincinnati gives plenty of time for every possible scenario to run through my head. Every time I started to think negative I just stopped and said God you are not going to let this happen. I arrived to find Rebecca in her own huge procedure room. There was a stand with more IV pumps than you have ever seen. Her bed and body is a tangled mess of tubes and wires. They were trying to get some more access to her veins/arteries for everything she has to get. They started with her left arm and couldn't get anything. Then they tried her right thigh for femoral vein access but no luck. To our surprise they took her off of the oscillator and put her back on the conventional ventilator. They said it was mostly because the oscillator was making it difficult to get her lines in because of the movement it causes. She transitioned wonderfully back to the ventilator. They were giving several heart medicines to control her blood pressure. It's not just as simple as her BP though. Her vessels are "leaky" meaning the fluid is not staying in the vessels throughout her body it is leaking into her tissue making her very swollen. The complexity of the problem has to do with the amount of blood going to her lungs through the valve they are keeping open and the amount of blood going to the rest of her body. Basically her body is wanting to send too much blood to the lungs and not enough to the body. So they are trying to correct with several medicines. They feel this is all being caused by an infection or sepsis although they have not pinpointed it. The plan is to keep her stabilized with medicine until the antibiotics can wipe out the infection. They had doctor rounds at 5:00 here and that is when we met the overnight attending Doctor. He is amazing. He can be completely in the cardiac zone one minute, be personal and tell us what's going on the next, ask a nurse how she is doing, back to the cardiac zone and then talk baseball with me. They completely know how to handle her situation. Right after rounds all of the doctors and RTs and a couple of nurses came back to Rebecca's room. Their plan was to change her ET tube to one with an inflatable cuff because she was leaking and it wasn't ventilating her adequately. Then they were going to try her left thigh for femoral vein access and at the same time get another line in somewhere for arterial access. They tried her foot first with no luck. They ended up having to do a "cut down" which means making an incision in her wrist to see the artery then put a line in it. This line allows them to monitor her blood pressure in real time so they can make medicine adjustments on the fly as needed. They still didn't have a vein accessed but she was actually kind of stable. About 7:00 he told us she is very very sick and could die. He said she was just "skimming the tree tops". We suspected this, but to hear a doctor say it verified it. Although we don't put our trust in doctors telling us our girls aren't going to make it, we were very happy with his complete honesty. He then said he thought she was going to be ok. A couple of hours later he said we are now trending in the right direction. They decided about 9:00 to go for her vein in her neck. They knew they were going to need it to give her fluids through the night. It went in pretty easily. So just to summarize, she has a PICC in each arm, a venous line in her neck and a arterial line in her right wrist and that's just the IV's. She has a catheder in down below, ET tube, NJ feeding tube in nose, oxygen monitors on her forehead and back, heart monitors, temp probe and O2 sat sensor. Tonight she has 2 nurses assigned solely to her and has had most of the attention the whole night. It is now 11:00 and they have her settled in and stable. I did finally get Jessica to leave and go see Joanna around 8:15 for a couple of hours. I knew it would be good for her to experience something positive for a change. They moved her feeding tube to her nose so she can see what it's like to have nothing in her mouth for once. This hopefully one step closer to feeding normally.

Thank you everyone for the prayers the last few days. Jessica had to bear most of the burden here alone and she appreciates it. Thank you also to the wonderful co-workers at Methodist Hospital for dedicating a time to collectively pray for Rebecca. Also, I don't know how, but my shift at work tomorrow is being taken care of so I can stay here - thanks!

I know these pictures of Rebecca aren't the most pleasant but it gives an idea of what's going on. Joanna is loving life on her new cannula.

Rebecca's Worst Day

2010-05-17T21:25:00.002-05:00

The last couple of days have not gone well for Rebecca. She continues to show no improvement from whatever it is that is making her sick and the doctors cannot find what is causing it. They originally thought it was the Pseudomonas but the antibiotics for that are not making her better. They are now also treating her for a fungus although they haven't gotten the results from the test yet. It takes several days to get the results so they went ahead and started the medication. She is in the worst condition she has been yet. Her blood pressure fell to 44/12 late this afternoon. They were going to give her epinephrine but they took it again and it had came back up to 49/29. She has required a lot of oxygen supplementation today to keep her sats up. They have put her on a morphine drip to keep her sedated and comfortable so she doesn't pull the ET tube. This drip seems to not be enough for her so they are also giving her morphine as needed and verset. At one point today Jessica texted me and there was the attending doctor and 2 each of Cardiologists, RN's, Respiratory Therapists, Residents, and Fellows at her bedside trying to figure out what is wrong with her and how to treat her. She was requiring 60% oxygen and her sats were still only in the 50's (she needs to be 74-84). They moved her into some different positions to see if she just wasn't comfortable but nothing was working. They then suctioned out two nice size thick spit balls out of her ET tube. After those where out she started improving. Jessica has had some very rough days with Rebecca as you can imagine. Thankfully, Joanna is doing great and is windowing on her high flow cannula with no problems. Hopefully, she knows why less time is being spent with her the last few days as we are with Rebecca. Jessica's father and sister went to visit today but I'm sure the visit wasn't as enjoyable with everything that was going on. We pray God will take her sickness away and put her back on a clear path to recovery and her procedure. She is so swollen and looks nothing like she did in the pictures from a few weeks ago. This type of sickness can be very concerning if not identified and treated in time. We trust that the doctors are doing everything they can and God will answer our prayers and turn yet another dip in this roller coaster into more good days ahead. Thanks for continuing to follow our girls and pray for them. These are the woods we knew we weren't out of yet.

Thankfulness

2010-05-17T01:59:00.002-05:00

It's hard to find the words to express my feelings when it comes to accepting favors and gifts during all of this. There have been several times where Jessica and I just weep in response to the goodness that God undeservingly gives us. I actually become more emotional about the good than the bad. I would say we deal fairly well with the anxiety, fear, frustration and even sometimes anger. When it comes to the other end of emotions - joy, gratefulness, appreciation, it's a bit overwhelming sometimes. The support during something like this is really the backbone of the entire situation. It is delivered in obvious and tangible ways and in ways that we may never see or know about. We just know that each day there are people that genuinely care. It is ultimately faith that carries us though. Just before getting that call from Jessica on my way home early Saturday morning I was listening to K-LOVE and they read this scripture. I'm sure I received and processed the news differently than I would have if I hadn't just heard this. How do parents receive news that their 7 week old girl just had to have chest compressions and be intubated for the 5th time and not completely fall apart. I'm here to tell you it's not without this faith.

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world." John 16:33

"Thank You" seems so petty to say to some of these things. When we say "Thank You" to God every day, we wish there were some other words that meant Thank You but to another degree. Until then, we will continue to say "Thank You" and mean it from the depths of our hearts.

We have so many people that have done so much for us and continue to give and ask to help. Here is another example of that where my brothers from my other family have organized a BBQ sale.

Rebecca again extubates

2010-05-15T23:27:00.000-05:00

Jessica started this post then I added to it.

Joanna is continuing her windows off of CPAP. During the windows she is so awake, looking around and taking all of the sights and sounds in. You can tell she is really trying to focus on things. In order for her to go home she has to be completly off oxygen and eating from the bottle or breast. When holding her and seeing her looking around everywhere and focusing on us trying to figure all of this out, I think back to all of those doctor visits where we were told she wouldn't make it, and that first couple of days when things looked pretty bad. It's truly a miracle of God that we are able to experience these joys of her precious life.

Rebecca has had a few set backs. I got a call from the doctor around 5:30 this morning that she had turned her head again and gotten her breathing tube out again. Brandon was on his way home for work so I had to call and give him the wonderful news. This time her heart rate dropped into the 60's during this so they had to call a code and begin chest compressions in addition to bagging her. Being on the oscillator is pretty uncomfortable since it is breathing so many breaths into her so most of time she is kept sedated. As the medicine wears off she begins to get agitated. It has been decided that for her well being she will be given sedation medication as she appears to be getting uncomfortable. Throughout the day her settings on the osillator were brought down. Brandon got a call this afternoon from her nurse that said she had a fever of over 102 but it has since gone down. Overall the doctors feel that all of her issues (billi levels up, swollen, fever, lung problems) are all related to this infection. They got positive results from her ET tube culture for Pseudomonas, the same infection she had before. They think she didn't completely get rid of it with her 10 day antibiotics. This time they are running it at least 14 days. They are checking now for fungi.

Brandon and I decided to go on a date Friday night! We met up with Brittney and Eddie (co-worker of mine) at the Reds/Cardinals game. They stayed the night in town and visited the twins today.

Rebecca Continues to Challenge

2010-05-12T23:45:00.000-05:00

I arrived at Rebecca's Pod this morning to find her getting an X-Ray. This was ordered to check the growth that they found on her ovary. She also was to get several blood cultures taken and a urine analysis. Soon after they finished her X-Ray at 9:15 she had to get her eye drops to dilate the eyes. The Ophthalmologist came around an hour later but one eye had not dilated so they gave her another drop and came back a little later. In this time her nurse and another nurse were working on setting up her IVs to be able to take her to get her MRI. They had redo the setup because they had to have 30' of tube because the pumps couldn't be in the MRI room. The eye doctor returned and he said she went from a zone 2 stage 1 in one and a zone 2 stage 2 in the other eye to both eyes being zone 2 stage 2. Still no big concern, but will check again next week. He explained the worst case scenario to me but I won't bother with that now. Her first field trip was down to the first floor to radiology at 1:00. She received a dose of sedation before she left her pod so she would be still during the MRI. Her nurse and I stayed in the room with her to watch her vitals and more importantly her O2 sats which usually fluctuate. She actually did surprisingly well through the whole thing which lasted about 40 minutes. When we got her back to her Pod and got her settled it was around 3:00 and I hadn't been to see Joanna yet.

When I got to see Joanna she had just finished assessment so I got to hold her for about 2 hours. While I was holding her they moved her isolette out and replaced it with an open top bed that has a warmer above it. She isn't needing the warmer but they didn't have a regular bed available. They also moved her down one spot because she got a next door neighbor that was just too close for comfort. They put her back in bed while I stepped out for shift change. While I was out I called Children's to find out about the results of the MRI. The doctor in RCNIC couldn't really tell me anything more than what we already knew. She wanted to let the surgery team look at it and discuss the plan tomorrow at rounds. After shift change I went back in and decided I might as well hold Joanna again since it is so easy now to get her out of her new bed. About 8:20 Children's called but I couldn't get it because I was holding her and you're not supposed to use your phones bedside. I figured they were just calling with some more information about the MRI. About 9:45 they called again. I was getting ready to leave anyway but now I knew something else was up because they wouldn't have called twice unless it was something significant. I put Joanna back in her bed and went to call them back. Her nurse explained what had just happened. Apparently, some time after I left there, she showed some respiratory issues. They pulled a blood gas and her CO2 was 130 which is extremely high. They also had a chest X-Ray and she had a lot of fluid on her lungs. They were going to give her sedation to help relax her so she wouldn't fight the ET tube. They also were going to give her lasix to get rid of fluid. I left UC and went to Children's. When I walked in there were about 6 people around her bed, again, not a comforting sight. Worst of all there was a big, ugly, loud machine called the oscillator chugging away beside her bed. We are very familiar with the oscillator since Joanna spent several days on it. The doctor met me and said the attending doctor that was on call decided this was the best for her. They had maxed out the normal ventilator settings and it was not correcting the lung issue. They are running all types of tests to check for infection again. Proactively, they are treating with antibiotics, again. Seems like I use again a lot. They did another blood gas and chest X-Ray about 30 minutes after being on the oscillator and her CO2 had dropped into the 70's which is still a little high but much better. Also, her chest X-ray showed improvement. Things seemed to be headed in a better direction when I left around 11:30 with the only issue being a low blood pressure which is a side effect of the oscillator and pulling off the fluid. They were going to talk to cardiology to see what they suggested if it continued to stay low or drop even further. I pray I don't get any calls tonight.

Now to clarify the heart procedure issue that came up yesterday. At rounds with Rebecca this morning I counted 18 people. There are usually 13-15 I would say. They went through their usual routine then cardiology got to explain the plan. They described a miscommunication on their part, with too many communicators not communicating. The whole explanation was about a 20 minute conversation but basically the plan has always been to do the procedure when she is around 2.5kg or 5.5lbs. More specifically, the plans is to wait as long as possible while at the same time trying to get her extubated. When she gets to the point where she is ready to be extubated they will do the procedure then. During this conversation, the senior cardiologist said he expected this to be late next week or the following week. That was until tonight's episode, which is sure to affect that schedule.

Interesting Day

2010-05-11T23:23:00.001-05:00

Today was a big day for several reasons.
1. Joanna had her liver ultrasound done and found that the spot that they had been calling hemangioma is now half the size it was last time. Therefore, it can't be an hemangioma because they don't shrink, but a healing bleed. So, back a few weeks ago when her blood counts were low and the thought this may be the problem it probably was but they mis-diagnosed it as a hemangioma.

2. Joanna also had her echocardiogram today. It was funny because the girl that did the ultrasound saw Joanna's last name and she told me she met another couple recently that had that last name but pronounced it . She recognized the name because her name was Barnard pronounced . Then we both realized that we had met each other when she did Rebecca's echo a few weeks ago. I assured her I didn't have any other infants at any other hospitals. The results of the echo showed she still had the PDA open and now showed another "hole" called a PFO. This is a "hole" that connects the top two chambers by design while in the womb. It is also supposed to close by a flap at some point but hasn't yet. The Dr. said it wasn't an issue now because her blood pressure in those chambers was still ok. They will follow up with another echo in a few weeks. I am unsure if they missed it in her last echo or if they just didn't mention it because it wasn't a worry.

3. The spot in Rebecca's abdomen was not clearly diagnosed by ultrasound so they are doing an MRI tomorrow at 1:00. They think it is a cyst and they said it was lymphatic. They originally thought it was on her ovary but may be on her liver or small intestine. At one point this morning, between 3 different surgeons Jessica got the impression they were going to do surgery today. They decided to do the MRI to get a better picture.

4. The biggest and most upsetting news today was what transpired during doctor's rounds with Rebecca. Yesterday, Jessica was told by cardiology that they were going to try to get her scheduled in the next couple of weeks for her procedure. Today, the cardiology team was at Dr. rounds which is a first that I know of. Out of the blue they changed the plan to hold off on her procedure until she was near being discharged as long as the reason for her still being intubated wasn't because of her heart. Jessica said it clearly caught the medical team off guard. We have 2 issues with this decision. First of all, why are they changing their plan when they have been saying all along between 1.5 kg and 2.5 kg. She is 2 kg today. The other issue is, we have been questioning her intubation for weeks ever since Joanna was extubated. I didn't realize it until I just went back and looked, but Joanna was extubated at 9 days old. They are now 44 days old. Joanna had much worse lungs mostly because of her lack of fluid and more prematurity. Today we are told that her heart condition is not contributing to her still being on the ventilator and they will start weaning her from it aggressively. Needless to say we are quite upset and I will leave it at that until we get more answers tomorrow. After Jessica and I left, cardiology came to meet with us so we will meet tomorrow. As soon as I got here we did talk to her attending doctor and it sounds like they were planning on the procedure being sooner rather than later so they elected to leave her intubated until after the procedure. If they had known cardiology was going to put it off they would have worked on getting her extubated long ago. Anyway, I expect some clear answers in the morning and hopefully it all makes sense.

Aside from all of that, believe it or not they are doing very well. They are both keeping their oxygen saturations up relatively well and seemed to be resting comfortably today. Please pray for an MRI that shows nothing to be concerned with, that Rebecca will transition off of the ventilator quickly, and that their doctors and other staff are providing the best care possible.

Special Mother's Day

2010-05-10T20:37:00.001-05:00

A few weeks ago when I noticed Mother's Day was approaching I realized a logistical problem. I knew Jessica would be in Cincinnati based on my work schedule but I didn't like that Katelyn and Kenlee would be in Evansville. My solution was to load up and go there for the day but Jessica quickly reminded me of how the last one day trip was for the girls. Basically, the time we would be there would be the time they should be napping, which means not the best for having fun. She suggested meeting at Holiday World. The nurses commended Jessica for her doing that for her kids on Mother's Day but she had to testify that it was just as much for her. I took the girls to Church which was odd without Jessica on Mother's Day and Jessica spent the morning with Joanna and Rebecca. Coming from someone that dreads every trip to Holiday World, we had one of the best days ever. We all had an awesome time mostly because the crowd and weather was perfect. We rode several rides over and over without having to get off and Katelyn was happy to learn that she had grown enough over the winter to qualify for a few more rides. Granny Mary and Dave spent some time with Rebecca and Joanna while mom was away. It was a special Mother's Day for Granny as she was able to hold Joanna for the first time.

Here is what has been happening with the twins the last few days. I'll start with Rebecca. When checking her blood they found that her glucose was in the 20's and it is usually in the 60's. They increased her feeds which corrected her glucose and grew some cultures from her blood but resulted in nothing. Saturday was another one of those days where we just wonder what will be next. Jessica called me upset because while she had left the pod for Dr. rounds on the other babies, Rebecca had extubated herself again. She went in to see her and they were in the process of getting her re-intubated. It all went smoothly, but the whole event was pretty draining for her (Jessica). Today her heart rate has been pretty low so they are watching that. She had one of her PICC lines removed so her other one with her heart medicine is being shared for other fluid. Jessica related her heart rate decrease to about the same time they started sharing her single PICC. Could be a coincidence but they are going to just watch and see. Jessica noticed a couple of days ago that she looked swollen in her face and neck. She had a chest X-ray when they replaced her tube and it didn't show any fluid around the lungs. It may just be a place where she is collecting some excess fluid but they will continue to watch it. Also, her bilirubin level was high today which has them interested in the liver. She had a scan done of it tonight and the liver team is going to be looking at it tomorrow.

Joanna had her share of problems too Saturday. Her red blood cell count was low so they were considering another transfusion but that hasn't been necessary yet. The last 2 days she has been on room air 21% pretty much all the time and her sats have been in the 90's. Today she had her eye exam and it was very good. It was a Zone 2 Level 0. Because of her red blood cell count they are going to do another scan on her liver tomorrow to make sure the spot that they think is an hemangioma is not changing. She is also going to get another echocardiogram tomorrow to see if her ductus valve has changed. She has started the process of getting out of her isolette and into a "big girl" bed. As long as she keeps gaining weight and keep sher body temp up she will be moving soon. With this "cot bedding" process she is able to wear clothes!

People who inspire us

2010-05-06T22:03:00.000-05:00

Rebecca is still having some breathing issues but she usually can come back up on her own without needing any oxygen help. The cardiologists are scheduled to have their weekly meeting tomorrow at 2pm. They will be discussing Rebecca and ensuring that they are all on the same page with the plan for her surgery. Brandon and I were told last week that Rebecca is more prone to bone fractures because she is being given Alprostidil (heart drugs) and TPN (nurtrition). These two things by themselves make the bones weak so she has double the chance of having bone fractures. These fractures can occur during any type of movement that we do with her. As much as Brandon and I love to see her dressed in clothes we decided to ask not to have her dressed in clothes and to be swaddled. As soon as she is off of these her bones will be back to normal.
Joanna did two windows yesterday and began acting worn out again so they are stopping the windows again for a few days. She is doing very well, most of her days not requiring any extra oxygen. She is getting very close to getting out of the isolette and into a somewhat normal bed. The next bed she will go to is one that is open but still has a warmer above the bed incase she needs a temperature boost.
Thoughout this journey I have come to realize how much the nurses who are caring for my babies mean to me. Don't get me wrong there are those who got into this profession for all the wrong reasons but when you get a nurse whose heart is in her job, you know it. I can't imagine going through this without trusting the people who are caring for my twins. I want to acknowledge a few and what they have done to stand out in my mind. Lindsay (Joanna's primary nurse) is very personable, talking with us as if we have been friends forever; she is always so gentle with Joanna and makes her look so comfortable; she tucks the cloth that I have my scent on up to her face or has Joanna hug it - I love seeing that, it makes me think she and I are loving on each other that way. Jodi (a night nurse of Joanna's) and I hit it off right away. She has triplets herself who were in the NICU so she knows what we are going through.  The first night she had Joanna I shared with her Joanna's story and she was so touched. She now signs up to have Joanna each time she works and says she loves this little girl - funny thing is I know she really does love her. Chris (Rebecca's associate nurse) has been fantastic with Rebecca. She has been her nurse more than any nurse we have had . She knows Rebecca so well and that gives me a sense of peace when I am not with Rebecca. She is so knowledgeable about the policies and procedures and knows what she is doing. Thank you nurses for the work you do and please know that you are touching lives every shift and we do not forget you - even when we are home, you will always be a part of our lives. Happy Nurses Day!!
I also wanted to take just a moment to thank each and every Child Care staff member who has loved my kids their entire lives.  Each one of you have been so good to my kids and have made this time in their lives so much easier for them to accept.  As I was getting Katelyn in her class Ms. Lori came into the room and needed me to sign a paper for Kenlee. As I was leaving she let me know that Kenlee, who was crying when I left her, was just fine and she found the smallest babydoll they have and was carrying it around and calling her Becca Sue.  Ms. Nancy has sent us emails periodically letting us know that the girls are being taken care of that we should not worry about anything. Ms. Nancy and Ms. Lori felt that the need to tell me this because they care for our family - thanks again we love you all. Happy Teacher Appreciation Day!!
I know this is a really long post but I would like to share two more stories that really brought me back to reality. I met this mom today at University Hospital who had twins, a boy and a girl, at 26 weeks.  Her son is fighting a good fight and getting better but her daughter passed away 6 days after being born. I can't imagine having to continue going into the NICU where your child passed away at day after day to see your other child who was still there. Even through her loss she found the blessings in her situation. Her baby girl's water broke at 23 weeks but she was able to stay in the womb for an additional 3 weeks which gave her brother a good chance at life. You see at 23 weeks all the research says the chances of a baby surviving is slim to none.  She also said that this whole experience has brought her closer to God than ever before.  My heart goes out to her. Earlier this week the NICU was preparing to get 24-week twins but I learned today that neither of them survived. These stories bring me back to reality of how blessed our family has been through this. Thank you for all of the prayers and please keep these two families in your prayers as well.

Their First Cinco de Mayo

2010-05-05T23:43:00.003-05:00

I got to do a lot of "kangarooing" the past couple of days. I think I actually hold the record for holding time at one setting now with 3 hours for Rebecca yesterday (I know, it's not a contest). There was a lot of sleeping involved in this time by both parties involved. My time in Cincinnati again was cherished and short but was glad to get home to see my other girls for a very short time before bedtime. We have big plans for Mother's Day though!
This trip to Cincinnati I was charged with the task to locate and purchase Jessica a laptop so she could stay connected while there. Most people that know me, know that doesn't mean heading down to Best Buy and picking one up. I have spent several days on Craigslist and found a couple of bargains. One good thing about being there is the larger Craigslist market and also in Louisville which is where I picked up a double travel system (twin car seats and stroller) on the way home tonight. "Finding deals and touching hearts" right Joy? I ended up getting 2 laptops, one in excellent shape and one not so much. Jessica wants to keep the one that doesn't work, so now I have a project. When it's all done I should have a pretty good deal.

I don't know if we've posted their weights lately, but Rebecca is now over 4# and Joanna is flirting with 3#. They are both doing great. For the past several days, Rebecca has been making her nurses earn their pay by the repeated dropping and raising of her O2 levels. They are constantly increasing and decreasing her oxygen to try to keep her within her range of 75%-85%. It's basically impossible to keep her in that range but they all have their ways to keep her close. Some crank her way up as soon as they see her drop a little. This is not the accepted practice and we cringe when this happens. She usually just requires a little help then levels off and returns to normal. Last night the Respiratory Therapist that was there hadn't worked with her before and he was going to 100% oxygen and getting the bag ready to bag her. I had to calmly explain to him that this is just what she does. The nurses that know her just give her little bumps at a time in each direction. The whole oxygen deal is very interesting. Too little oxygen and the brain suffers, too much oxygen and the eyes suffer. There are probably more areas affected on each end of that scale but these are the 2 major ones. Speaking of eyes, Rebecca had hers tested today and she has Retinopathy of prematurity (ROP) which is common in most preemies. She has zone 2 stage 1 in one eye and zone 2 stage 2 in the other. Nearly all preemies with this require no treatment and it is self-correcting. A small number require laser treatment with great success. Basically, there is no cause for alarm at this time and she will be checked again in about a week. Joanna is scheduled to have her initial exam on the 10th. Today, they increased Joanna's cannula windowing from 1 hour per day to 2 hours, twice a day. That is if she does ok with it the second time which is going on as I am typing this. I was there when she did her first 2 hour session and she did great.

I realize that I posted some of the same pictures that Jessica had already posted, but since they are so adorable I just left them. Hopefully, we will soon have some pictures with out anything in their mouths, noses, arms, legs,,,, etc. Then we can actually start to see if they look the same or not. I think not.

Little to say, more to show

2010-05-03T23:36:00.004-05:00

Nobody wants to hear me talk, I know everyone wants to see these girls. To be honest I am struggling with content tonight, but I wanted to post these pictures. There has been little change in the last couple of days. They are both still gaining weight and doing very well. We are actually starting to kind of estimate when Rebecca will be eligible for her procedure. Our estimate is 2 weeks from now, which is based purely on her rate of weight gain. I got to hold them both today like mommy gets to do. It's pretty cool when Joanna gets to be held without her CPAP. She just opens her eyes wide and looks all around like she's taking it all in. They are getting their eye tests done tomorrow which from what I hear is just testing for retinal attachment. This is something that is done on all infants, or at least preemies. The first 3 pics are Joanna, the last 3 are Rebecca. Although these days do not bring much to report we pray these days continue.

Let's try this again....

2010-05-01T21:50:00.000-05:00

Joanna had two 1 hour long sessions of using the nasal cannula instead of the CPAP machine. Her lungs did great, but it wiped her energy out. She was so worn out after each session that the team decided not to have her do another one for awhile. I spoke to her resident regarding her head ultrasound and the bleeds are unchanged. Its good that they are not getting bigger, but we are wanting them to decrease in size. At this point it is not really anything to worry about. I asked her if they had reason to believe it was PVL or if they had mentioned that and she said they are not seeing anything that makes them believe it is PVL - THANK YOU GOD!! She continues to get therapy everyday - for about 2-4 hours. Sue and Ann (OT's) put splints on her legs and left arm to get increased flexibility. They are seeing much improvement in the little time they have been working with her. Sue, her main OT, has showed me how to work on straightening her writst and ankles - I love feeling like I am taking care of my baby.

Rebecca's isolette top has been lifted for a few days now because she is able to keep her body heat. I went to see her yesterday and she was wearing a onesie - her first time in clothes. Of course I did not have my camera!! She has had some tough respiratory days. She has been running at about 27% O2 with sats between 75 - 85. The last few days she was running at about 38 - 40% O2 with sats falling into the 50's at times. She had her vent settings moved back to what they had been before she started having these issues and that seemed to do the trick. Her belly was also a little distended so they got an xray and found she had a lot of air in her belly. Today her belly size was down and she was acting better but I did learn that she is a gassy thing - passing gas all the time according to her nurse!! What can I say she is just like her daddy.
She is scheduled to have her eye exam on Monday. This is a test they do on babies 4-6 weeks after delivery where they dialate their pupils and look in the back of the eye to see if she has any retina detachment.
She received a follow up echo on Friday that showed there was no change since the last echo. She will continue to have echos done each week to ensure there is not change in the heart function.

Disappearing Blog

2010-04-30T22:53:00.000-05:00

Well, Jessica is going to kill me. For some reason she has me proof every blog before publishing it. Tonight I was doing just that, like a good obedient husband and I goofed. All you current and future bloggers out there learn from this mistake. I made a couple of changes then decided I liked the way Jessica had it instead. So, I started hitting the undo arrow. Apparently, when editing from another computer, when you hit the undo arrow 1 more time past the changes you made it deletes the whole blog. It wouldn't have been a problem if it wasn't set to auto save every 3 seconds. Hard to figure out what just happened and click the redo before that auto save kicked in. Anyway, I talked to her and she will try to do it again tomorrow.

Here's what I do know though:
1. Rebecca's echo today showed no change.
2. Joanna's head ultrasound showed no change (more detail later)
3. Rebecca's abdomen X-Ray showed air in her stomach (not a major problem)
4. They are both still growing about 2 ounces/day
5. Getting to spend the entire day with my girls in E'ville and put them to bed in their beds at home was awesome!

Happy 1st Month Birthday!!

2010-04-28T22:04:00.001-05:00

Well the girls were born one month ago - it makes me feel so good to know that we have gotten through one month already. Both girls had a great birthday!!

Rebecca has been adding the grams on. Yesterday she gained 50 grams - so she is now 3.6 lbs. Even though this daily weight was good they want her weekly gain to average 30 grams a week. Last week her weight gain was only 15 grams. Because of this they are toying with the idea of giving her more TPN (calories) through an IV. The downfall to this decision is that she may end up getting fluid on her lungs because of the extra fluid they would be giving her. This seems to be the constant dilemma that we have been facing her entire life - you want to do things for her to grow her but because of her heart they are limited on what they can do.
I was able to hold her for about 2 hours today!! She also was looking cute today with her bow on.

Joanna conquered a milestone today - she was taken off of the CPAP and put on a regular nasal cannula for an hour today to see how she did. She did excellent. They call this windowing her onto the nasal cannula and they will continue adding more time that she is on the nasal cannula until they are comfortable that she will not tire out. They will most likely allow her to do two hours tomorrow since she did so well. She currently weighs 2lbs 12 oz.

My mom, Aunt Sue, mother-in-law, father-in-law, kids and husband had a 1 month birthday party for the twins tonight. I will attach pictures from this bash in the next day or two. Wish the girls and I could have been there!!

Happy Days

2010-04-27T20:58:00.000-05:00

Joanna had one of her best days yet!! She was on room air (no extra oxygen given to her) the entire day. Usually she sits at around 23-25%. She also usually needs to be bumped up to around 28% when her care is given every four hours BUT she was able to tolerate her care on room air - that is the first. Her day shift nurse was so excited when I came in to tell me how well she had been doing. Joanna must have known that I was asking her resident this morning what she needed to do to get off of the CPAP. One of the things was to be on room air for most of the day and not require extra oxygen when she gets care. I was able to hold her for about an hour today. When they got her out and put her in my shirt, she had her eyes open and was looking at me. I know she can't actually see me but as I talked to her I know she knew her mommy was holding her. It was the highlight of my day.
Rebecca's infection is a common one among preemies. She will be on two antibiotics for about 10 days and then should be back to normal. She was resting peacefully the entire time I was there today. Her nurse put a cute bow in her hair today - she looked so precious. I'm not sure if I have shared this before but Rebecca loves to have her hands up around her face. She also loves to talk with her eyebrows!!
Each of the girls have a resident assigned to them. The residents are assigned to a hospital for a month and then they move on. Brandon and I have really connected with Joanna's resident Holly. She has been another blessing in our lives and we will miss her smiling face each day. Thanks Holly for taking care of our precious angel.

4 Weeks and Gaining

2010-04-25T23:36:00.000-05:00

It was 4 short weeks ago when "Becca Sue" and "Shea" (as Kenlee calls them) entered our world. As you have been with us through this so far, you know it has been anything but routine. I would like to begin this blog by saying Thank You for EVERYONE reading this and praying for the girls and our family. I wish I could personally thank all of you somehow.

The highlight of the last couple of days has been growth. Their current weights are - Rebecca 3# 4oz. and Joanna - 2# 8oz. We try not to think of it as a contest because believe it or not, Joanna has an unfair advantage because of Rebecca's heart. So, they have both gained nearly a pound since birth. Rebecca's tests have found some type of infection around her ET tube. They think it is a bacteria from her aspiration a few days ago. The original antibiotics didn't take care of it, so they started her on another one yesterday and it will run for 10 days. They will have a more specific type of infection when the cultures mature tomorrow then they can modify the antibiotic if they need to. They think this was contributing to her respiratory issues where she had to be bagged. Yesterday, she had a small fever and was somewhat lethargic. Today she seemed to be more her feisty self and the temperature was normal. Joanna had a super day also, mostly because dad got to kangaroo with her. Her feedings were increased back to full volume today after her brief stomach problem a couple of days ago. She finished her antibiotics treatments tonight. Hopefully, since they are finishing her medicine she will be able to have the IV removed from her head and she can go back to the other CPAP that fits her better.

All of the girls from our small group visited yesterday evening and then we went out to eat, me and 7 women - not a bit awkward. I hope they made it home, they may still be driving around somewhere in rural KY :). Jessica left early this morning to go home for a couple of days. She made it just in time to get Katelyn and Kenlee and go to Church. We have been missing that part of our life for almost a month now. I visited another church here in the Cincinnati area today but found myself a bit envious of Jessica as she was surely the one in "extravagant worship". When I think about The Edge at Bethel it reminds me of the ribs at Shyler's. I've tried ribs at many other restaurants, but every time disappointed in comparison to Shyler's. Wrong? - probably, but that's my analogy. Thank you, those that have set the bar at that level.

Mary and Dave brought a special guest to see her sisters today. Can you believe she found this shirt at the mall? Ok, maybe she made it. Yes, it is the same shirt in both pictures just turned around. Love Ya girl!

Fighting Infections

2010-04-23T23:24:00.000-05:00

I (Brandon) got back in town today around 3:00. When I got here we went to Children's to see Rebecca. She was sleeping comfortably but mom just had to get her out and hold her. This is always good for the girls, they seem to take their sleep to another level when they are being held. They had drawn some blood to test for infection. The results showed there may be something going on so they are going to start her on antibiotics again. While we were there they started an IV to begin the antibiotics tonight but she will have to get another PICC put in tomorrow for the long term medicine. She already has a PICC in her left arm but they can't run the antibiotics in the existing PICC because it has the medicine to keep her valve open. They are going to give her a 7 day antibiotics but may increase to 14 day depending if anything else shows up. They really have no other explanation for her O2 sat levels dropping. Also, we notice a change in her color that has been since she aspirated her milk last week. The potential infection may be from that incident. She did pretty good today with her O2 levels. She also had her feeding tube inserted a little deeper just past her stomach into the small bowel. This is to hopefully get her growing faster.

When we walked into see Joanna after dinner there were 3 nurses and a Dr. around her bed. That's never a good sign. The obvious change was that she was back on the original CPAP because they put an IV in her head and it interfered with her other CPAP. They told us this afternoon they had become concerned about a possible infection with her also. Their biggest concern was that her temperature had dropped and she had a large stomach measurement. X-ray showed a lot of air in her stomach so they were going to have to stop her feeds again. Her stomach measured 22.5cm before we got there. Soon after we got there the nurse was doing her assessment and when she went to change her diaper she was busy filling it. The nurse squeezed around on her stomach and helped Joanna get everything out. She measured her stomach after that and it measured 21cm. They think this was part of her problem, needed to poop. They also ordered labs on her blood. It showed she had a low hemoglobin count, so she will get another blood transfusion tonight. Luckily, she is still within time limits to receive from the same unit of blood as before which is good because we know she has no problems with it. We will know tomorrow if they will continue her feedings or if they will have to stop them for a bit. One explanation they gave for needing blood again is that her body is growing faster than it can produce blood for. They weren't concerned that she was losing blood anywhere.

Another day of minor disappointment but we are remaining positive. Hopefully, they will soon be past the volatile preemie stage where everything is a constant struggle just to stay on top of things. It will be nice to have many consecutive days of no problems, never taking them for granted.

News Flash!! - Girls are identical

2010-04-22T21:01:00.000-05:00

Well that is the BIG news today. I few days ago I went to a follow up drs appt and asked what the pathology report was on the placenta, whether there was one or two. The dr told me that the pathologist report said that there was one placenta and one sac. Well we all knew the one sac report was not correct so the dr ordered the patholgist to look at the placenta again and give another report. The nurse called me back this afternoon and told me that because Joanna's sac was so small and it had broke that the pathologist was not able to tell there was two sacs but that there in fact was only ONE placenta. This means that we had one egg and one sperm combine and then split to make two babies - identical twins!!

Rebecca had two bagging episodes last night which was better than the night before. After Rebecca's dr rounds this morning another echo was ordered to see if anything had changed to make her have the breathing issues she was having. The echo showed no change in the heart so that was good but they still don't know why all of a sudden she is having the low sats. I was able to kangaroo hold her for about 2 hours and the entire time I was holding her she required no extra oxygen and O2's were in the 90's. It just goes to show she needs her mommy to comfort her!! Again the main goal for Rebecca is to get her to grow so they are giving her breastmilk fortified to 28 calories (it is as thick as a milkshake), TPN (additional calories), and Lipids (fat). They think they have figured out what she needs to grow as she gained 2 oz. overnight.

I didnt get to spend too much time with Joanna today as I was with Rebecca from 9am - 4pm. The resident called me and told me that Joanna had a good night. They were taking her off of the TPN and giving her only breastmilk. She gained about 25 grams overnight and seems to be growing very well. I had a number of nurses tell me in the last few days that she has really grown. I was talking to Lindsay (her primary nurse whom Brandon and I really like) and she said that Joanna is at the weight where they will start trying to wean her off of the CPAP and on just a nasal cannula. They are focusing now on getting her foods increased and then they will most likely focus on this. I can't wait!! Once she is off of the CPAP I can begin trying to breastfeed her.

Brandon comes back up tomorrow - can't wait to see him! Thanks for the encouraging comments on yesterday's blog. You have no clue how much better it makes me feel when I read them. Thanks.

Reminders

2010-04-21T21:25:00.000-05:00

I was reminded today that we are not out of the woods yet. You get blind to the fact that our babies are still fighting for their lives because they have been having such good days.

Rebecca had a rough night last night. Her O2 sats dropped on four occasions and because increasing her O2 was not bringing her levels back up, they were required to "bag" her. This means they remove the vent connection to the oxygen and manually force air in her airway with a bag they squeeze. Right before I got there this afternoon she had an episode where her O2 sat dropped into the 40's (they want her between 75-85) and her heartrate dropped into the 70's (normal range for her is between 130 - 160). Again they were not able to get her back to her normal ranges by increasing the oxygen so they had to "bag" her. Then while I was there her O2 again dropped into the 40's and had to be "bagged" again.
After her bad night an xray was done. It was found that the vent was not located where it needed to be so they moved it down further. They also said that the xray showed there was a lobe that was deflated so they increased her pressure into her lungs to inflate it. When they repeated the xray again this evening, it showed that the tube was infact in the right location.

Joanna had a head ultrasound done yesterday as a follow up scan for her bleeds that were discovered a few weeks back. After the ultrasound was read it looked like the bleeds are still grade II bleeds but there was also a bright spot on the ultrasound that the physician wanted to have scanned again with another ultrasound next Friday. This bright spot may be nothing but they did mention one thing they look for in preemies is what is called PVL or periventricular leukomalacia. PVL is the most common brain injury in premature babies. It is cysts that occur in the white matter of the brain. Some complications to PVL is mild disabilities such as learning disabilities to severe disabilities which include cerebral palsy.

Please pray for Rebecca to overcome her respiratory set backs and begin to grow so she can have the cardiac cath procedure done. Once she has this procedure they can begin taking steps to get her off the vent. Please pray that Joanna's bleeds and the spot they saw today will not be there next Friday. God CAN do these things!! Please pray for Brandon and I as we continue down this roller coster of emotions. Pray that we will continue to lean on God and each other. Thanks.

Girls are doing well

2010-04-19T20:49:00.000-05:00

Both girls are continuing to have good days. Even though we have had some set backs I thank God everyday for they progess they have made and the miracles he continues to bless our family with.

Joanna's Update: She is eating again!! They started feeding her a few days ago and she has tolerated the feeds very well. Before her belly issues she was up to 12 ml and getting the milk fortified to 26 calories. We are now starting over with the feeds so we are back down to getting only 5 ml. As long as she continues to tolerate them well she will get mls added each day and then they will begin adding the calories back in. Her O2 has been set between 21 - 25 % and she is still on a 5 setting with the CPAP. She has been doing very well with the new nasal prongs they are using. I was able to hold her again today (skin to skin). Both girls tolerate the kangaroo hold very well. I can't tell you how overwhelming it is to hold them when during our pregnancy for weeks we were told we may not have either of them to hold.

Rebecca's Update: They have increased her breastmilk to 28 calories. You should see how thick adding those calories make the milk - it is like a milkshake. If she does well with this they may even increase it to 30 calories. They usually stop adding calories at 28 but since their goal is to fatten her up, the nurse said they may increase her to 30. We will just have to wait and see how she digests the milkshake. They have been able to get her settings lowered which is getting us closer to our goal of getting her off of the vent. I have noticed that since she has gotten her bigger tube she is breathing quite a bit over the vent settings!! The cardiologists are monitoring her every few days to see how she is growing. They are weighing various things to help them decide when they need to do the procedure. They need her to grow to have the procedure but the medicine she is on for her heart is holding some things up. It is slowing down the process of getting her off of the vent. Because of her heart condition they also are having problems getting her to gain weight because they don't want to give her too much food because then her heart will work harder to process the food which would be bad for her condition.

My Uncle Joe, Anut Pam, and cousin Paul came up to visit today. Because she was having company, I put a small bow in Rebecca's hair! She looked so cute. I have a bow for Joanna and as soon as get gets rid of her stylish hat she is required to wear, she will get to wear hers.

Being home with the Katelyn and Kenlee was really nice. I went to Methodist to pick up diapers and was able to see some familiar faces. We went to the Tri-Fest on Friday for lunch and a few rides. It was so nice feeling like I was back in my routine. I feel pulled in two directions - I hated leaving the twins but then I hated leaving Katelyn and Kenlee. I can't wait to have eveveryone home and be a family again. I know it is not far off, that what we are going through is only a season in our lives that will be completed soon.

Thanks for all of your prayers. I want you to know that our family appreciates you so much and would not be where we are today without you and your prayers. God is working through this situation in more ways than we know.

Joanna Pics

2010-04-16T23:53:00.000-05:00

Mommy bonding

I asked to be next but the nurse wouldn't let me

No, she's on the outside

Daddy holds me while I get new sheets

Granny's perspective

Rebecca Pics

2010-04-16T23:52:00.000-05:00

I'm yelling, but nothing's coming out

I told her mommy was coming back tomorrow and I had to leave again

Best pic yet!

Bonding time for daddy

Big yawn

Daddy back, Mommy leaving

2010-04-15T15:06:00.000-05:00

Yesterday, I made my way back to Cincinnati after my few days back home. Jessica and I spent the afternoon with Rebecca then after dinner went to see Joanna. This morning we went to doctors rounds with Joanna and they decided to pull her replogle tube that was being used to vent her belly since they weren't getting anything out of it. She will continue to receive her antibiotics today and tomorrow and may get to resume her milk feedings tomorrow. There are no signs of infection in the culture they are growing. When we weighed her last night she had gained almost 50 grams in 24 hours. The nurse couldn't believe it so we did it 4 times to be sure. We weigh her by picking her up, zeroing the bed scale then laying her back down.

When we went to see Rebecca this afternoon we found out that they had removed and replaced her ET tube with a larger one. They had found that part of her lung on one side had partially collapsed. Since she is growing, she needed a larger tube for more volume to keep her lungs inflated. They have taken a couple of blood gas tests and they are trying to get her CO2 levels down. Her vent settings are abnormally high for her because of all of this change. They expect her CO2 levels to be down later this afternoon then they can start bringing down her vent settings. The doctor said this whole process is a very normal tweaking process. It seemed especially stressful to Jessica because she was literally on her way out the door when this was happening. The doctor assured us this was all just part of changing her tube and as her lung starts expanding back out it should bring down her CO2 levels back to normal then they can bring back down her vent settings. I wasn't too worried, but I wasn't leaving to go home either. I remember last Thursday when I was leaving to go home there was a small problem that seemed enormous at the time. It's just because you know you won't be at their side to see them through it. I will keep mommy updated with texts just as she did for me last week.

Yesterday morning before I got here, Jessica called me and said there was a chance they could bring Joanna to Children's Hospital to be with Rebecca. We have been talking about this opportunity since they were born but weren't ready to make that decision yesterday. We have tabled it for now. There are varying opinions about this move. Our current opinion is this - Why risk the potential error in treatment by confusing the two girls when the only benefit is our convenience. Actually, being able to go to two different locations kind of breaks up the day. Eventually, we will probably look into this when mom starts breastfeeding because that would mean back and forth every couple of hours all day long. Also, by then Joanna should be more stable and Rebecca may be close to having her procedure.

If you aren't blown away by the human body and pregnancy specifically, maybe this will help. Here is a small list of things that I have realized have to be monitored or compensated to keep our girls alive outside when it all just happens naturally in the womb.
Temperature, humidity, nutrition, oxygen levels, carbon dioxide levels, respiratory rate, heart valves, skin care, bodily waste, infection control, blood volume, stressors like noise, light and movement, extra fluid or not enough fluid, blood pressure,
Not only are women's minds impossible to understand their bellies are pretty crazy too!

Identity Crisis

2010-04-13T16:22:00.000-05:00

Here are a couple of pictures I put together to see if you could help us. Can you pick who is who and do you think they are identical? Post your thoughts in the comments. Just thought we could have a little fun hearing from everyone. Things are going very well in the last few days. We found out today that it is looking like Rebecca will be eligible for her heart procedure earlier than originally thought. Until now, they were saying she needed to be 5.5#. Now they say she may have it done when she is in the 3.3# range. This is brought about by the slower than expected rate of weight gain and her blood pressure drops last week. There are some other criteria that affect this decision that Cardiology will discuss with us soon. Joanna's stomach seems to be happily processing her food now. They are keeping her on the antibiotics for now as precaution. They told us that we would reach this point where it seems like nothing is happening. Not that we are at that point yet but it's not the huge milestones we were achieving last week. Each ounce of weight is a mini milestone to us and any day without a surprise phone call or setback is good enough for us. I bought a matching crib today to the one that Kenlee is using now. She will be getting upgraded soon to a toddler bed. We hope to do this in a positive manner before the twins come home and "take" her bed and bedroom. She will be moving next door to what is now the play room. We hope this is a smooth transition without much resistance. When I get off work in the morning I will stop to see the girls here in town before heading to Cincy. Jessica will stay there with me until Thursday afternoon then she will head home for her time with the girls here. We don't know if this is how it will work for the entire time but it seems right for now. She will return Saturday and I will go back for work Sunday.

Balancing Their Diets

2010-04-12T20:14:00.000-05:00

Rebecca was swaddled in a blanket today to see if she was able to maintain her body heat without getting heat from the isolette. She has done extremely well. This is a step in the direction of her graduating out of isolette!! They are bumping up her breast milk calories to 24 and she has been tolerating her feeds very well. My mom and I went a parent meeting at Children's Hospital. There you get to meet other parents with infants in the NICU, get information about different services they offer, ask any questions you may have, eat pizza, and play games. We got to play Baby Bingo and between mom and I we took home 10 prizes.
Well it was just a matter of time but Joanna got her first belly ache today and her daddy got rid of his finally. When I got the call from her drs this morning, they said that overnight her belly began to become distended at each assessment and was tender to the touch. She also wasn't acting herself and looked pale. There was one assessment early this morning that she had 4 ml of food that was partially digested (she should only have a trace of partially digested food between feedings). Based on all of this they decided to stop feeding her today to let her belly settle. They also took blood cultures to see if they would grow any infections, started her on antibiotics just in case she was getting an infection, and ordered an xray to see if she was beginning to show signs of NEC. NEC, necrotizing enterocolitis, an intestinal infection unique to preemies and usually comes on between 10 and 14 days of life. As the day went on she began to act like she felt better. Another xray was done at 6pm and it did not show anything that should be concerning. They will evaluate her again tomorrow morning to see if the will again hold her feedings. Rebecca's echo showed no change since the last one.

Daily Update

2010-04-11T21:11:00.000-05:00

Both girls are doing well. They are getting Human Milk Fortifier added to their breast milk at each feeding. This fortifier adds protein and calories so they will begin growing more. I was able to hold Joanna for about 30 minutes and Rebecca for about 1.5 hours. Rebecca will get another Echo tomorrow to see if everything still looks ok. One thing that both girls have in common is the good usage of their bowels. They both keep pooping out of their diapers.

First attachment is Joanna, second is Rebecca.