Catching Up

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

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

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

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

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

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!

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

Rebecca Sue from Brandon Barnard on Vimeo.

Saying Thank You

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!!

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

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

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

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

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

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

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

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

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

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

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

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

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!

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

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.