Rebecca Continues to Challenge

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

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

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

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

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

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....

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.