The Great Debate- Week 12

The debate over Brody's feeding tube continues. This entire week has been a bit of a waiting game. Our surgeon has been pretty adimit about Brody not going in for another surgery right now. I completely respect his decision and know he has Brody's best interest in mind, but if that's the case, we need to really figure out an alternative. I am so tired of being in the hospital and am ready to go home. Three months is long enough. I remember talking to the mom of another child and when she was telling me her story she said it was 4 months before she got to take her baby home. I remember thinking surely it wouldn't be that long for us, but slowly we are creaping to that point. I guess it's a good thing that it is his feedings that are keeping us here and not heart complications, but still it's hard. 

We have started using a different type of bottle that allows us to adjust the flow of milk a little easier and I think it has made a world of difference. Brody is now bottle feeding every other feed and when he does, he takes about half of it by bottle. Huge success, but still a ways to go. With this feeding schedule, I am now doing two nightime feedings and it is exausting. I wake up for his midnight feed, which takes us about an hour to give the bottle a valid effort. I then get up about 4 or 5 to pump. At 6 we feed again for an hour, and then it is touch and go with getting to sleep after that. It is a contstant battle with the pacifier. I get him all comfortable and by the time I go to lay back down within a minute or so he lost his pacifier and I am back up. We play this up and down game for quite a while sometimes. There are some mornings that are more difficult then others and it seems just as I get him content, people start coming in to mess with him. You have the assistants that come in to weigh him. The new nurse that comes in to do vitals. The nurse practitioner that comes to evaluate before rounds. In between each of these visits I am up and getting him re-settled. There are times I really want to tell them if they wake him they better be willing to put him back to sleep. It really is exausting. I hope this will be better when we get home and there aren't so many interruptions and a there is a Daddy to help with pacifier duty. 

The absolute highlight of my week has been the emergance of Brody's personality. Brody has started smiling a lot more and I have even been able to capture some of it on camera. Most pictures are out of focus though because he is bouncing his head around while I am trying to take the picture one handed and there isn't time to get it in focus. They took out Brody's PICC line where he used to recieve meds and IV feeds, but since all meds are oral and he doesn't get the IV feeds anymore, there is no need for it. One less set of stuff to deal with when holding him. The coolest thing about this is we now get to put clothes on him. He looks so different just getting to wear a onesie versus only wearing a diaper and blanket. 

My hope for this week is that an actual plan will emerge. Our surgeon told the doctors to come back and talk to him the day before Brody would be ready to otherwise go home. They told us he would have been able to go home early last week if it wasn't for his feeding. They should be getting together today to come up with a solution. At this point I think he has shown promise with his feeding and rather than having the surgery for the g tube, I hope they will send us home with the current feeding tube he has going through his nose. We shall see what this week holds for us. 

So.... they just rounded on us and rather than go back and re-do all this, here is "the plan" (if you can even call it that). Since Brody has been making improvements with his bottle feeds they want to hold off on any decision regarding a feeding tube and take things day by day. We will re-evaluate things in a week or two. I am happy that they aren't sending him in to surgery or rushing into any decisions, but I am just so ready for us all to be home together. Hearing that we will re-evaluate in two weeks is a little difficult to hear. 

Modeling his new outfit

SMILE

SMILE

My niece and nephew finally got to see Brody! 

Fifteen! Week 11

After 10 weeks in ICU, we finally made it to 15! On Tuesday, we officially had orders to move and just had to wait for a room to become available. Finally, around 6pm we were on the move. Trey and I both stayed the night in our new room, and that first night was quite the experience. There is a pull out day bed they say fits two, but I would seriously question that. Brody slept great that night, I on the other hand did not.  I had never spent a night with Brody, and sadly was unaware of his habits and noises he would make. He has a breathing condition known as Stryder which is a result of his paralyzed vocal cord. As a result he has a tendency to breathe loud and sound like a squeak toy. Throughout the night, he would start episodes of this noisy breathing and I would jump up thinking he was about to start screaming, but he was sound asleep. Not to mention, the nurse comes in every 3 hours to check his vitals and set up his feeds. I am an extremely light sleeper, so this wasn't the best mixture for me. All in all, I think I slept for maybe an hour at about 3am. That morning, Trey took over and I was able to take a nap for a couple of hours before the doctors started making their rounds. The next couple of nights got better. Our night nurses were like ninjas and I wouldn't even hear them come in. A few of the nights had intermittent periods of Brody needing his pacifier, but overall I can't complain. Well maybe I can complain about one little thing. It seems that some mornings just as I would get Brody to sleep and lay back down, someone would need to come in and mess with him. Whether they would need to draw blood, weigh him, or poke on him and listen to his chest to get ready for rounds it was always just after I got him settled.

As far as his plan from here, everything is kind of up in the air. Towards the middle of the week, we started talking seriously about where we need to go from here to get us home. We discussed the possibility of putting in a G-Tube (feeding tube) in the belly. If we did this, it would require surgery and about a week later we would be looking at going home. Realistically, Brody will probably not be taking all his feeds by bottle for months and it isn't realistic to leave him here in the hospital just to work on that, and though I would rather not have him on a feeding tube, it makes the most sense. All the different team of doctors would need to discuss and agree on this plan. We had things pretty much set to go and were going to have the procedure scheduled for the early part of next week, but we found out on Sunday that our heart surgeon wasn't on board with this plan. The heart surgeon would rather go in and repair the aortic valve that is still leaking that way his heart would be stronger to go through surgery to put a g-tube in. The surgeon still wants to keep his plan in place, to put off that aortic valve repair until Brody is bigger and until it really becomes an issue and he shows signs that he is not tolerating the leaking anymore. So, we are back to the planning phase. I don't really know what this all means at this point. I don't know if we will be hanging out here in the hospital for a longer period of time, or if they will send us home with the feeding tube he currently has. This week our team of doctors are going to need to discuss and come up with a long term plan. It is a little nerve racking as I sit here and wait to find out if we will be going home anytime soon and its frustrating having all the back and forth, but I know all these doctors have Brody's best interest in mind and will make a collaborative decision to do what is best for him.

 Our new room! See that sofa in the background? It pulls out a little bit more, and is supposed to fit 2.

 

First family photo

Hurry Up and Wait- Week 10

This has been a full week of playing the waiting game. On Monday, we were told we were ready to move to the floor on Tuesday. We were super excited and rushed home that evening to get some laundry done and pack our bags. Tuesday, Brody had an echo of his heart. This is routine before going to the floor, but Brody's echo showed a slight change. We know a couple of Brody's valves still leak and will need to be repaired in the future. The measurement of the leakiness of one of the valves showed a change, so they would need to discuss with the surgeon before sending us down. The surgeon was in surgery all day Tuesday, so they wouldn't be able to discuss the results of the echo with the surgeon until the evening, so we were staying in ICU. Wednesday, I was super relieved to find out the surgeon was ok with the change he saw in the echo and was wanting to stick to the original plan of letting Brody grow before going into another surgery (still hoping that will be a year or more). Over the night, Brody had thrown up and they thought they saw blood in it. They stopped his feeds that night, but we were able to restart them in the morning because the doctor was not overly concerned, BUT they would keep him in ICU to monitor him and make sure there weren't any other issues. We spent the entire week not knowing if we were getting moved and were living at home out of our suitcases. Towards the end of the wee,k we didn't quite know what the hold up was for moving us. Brody was doing great and the surgeon had given us the green light. Over the course of the week, we were working on transitioning Brody from his fat free formula to some skim breast milk. They take my breast milk and spin it to take out the fats. They measure the calories in it and then mix in the formula to get to the calorie count the dr wants each feeding. My breast milk has a higher calorie count then most which isn't a bad thing. It just means they won't have to mix in as much of the formula. The people on 15 do not want to take a baby that is transitioning feeds and want to make sure the baby is tolerating his feeds before coming down. This meant, again, we were staying in ICU. The good news is Brody is tolerating his new grub quite nicely. It even seems that he isn't spitting up as much. We are still working very hard on drinking from the bottle. One day we will totally rock it and then the next... not so much. Brody went for a swallow study just to make sure he was safely being able to take a bottle and that his milk wasn't going into his airway when he drinks, and it isn't. It is just going to take him time and adjusting. We have been told, fingers crossed, that Brody should be moving to the floor this week. I am trying not to get my hopes up because this is the fourth week we have been told this. Brody will have another echo and if everything is good, we move on. Prayers! Prayers! Prayers! I pray that his heart doesn't show any significant change so that we can finally be with Brody all the time and we will no longer have to leave him. It is getting harder and harder to kiss him good night and walk away.

 Got a mobile to pass the time

 

 Snuggle time!

 

 Out like a light!

 

 Who am I kidding? This kid is spoiled!

 

:)

I asked Brody what he wanted for dinner, and he fell asleep thinking about his options.

Watching football with Daddy

 

Brody was voted most athletic kid on the unit

 

 This is how we spend most of our days. I hold Brody on my chest and he is either sleeping, or he cocks his head way back and stares at me.

Still Here- Week 9

Still moving forward. We had a rather un-eventful week. We are still hanging out in CVICU. The team last week wanted to monitor him for a few days which then turned into the entire week. One evening when Trey and I were here, Brody started breathing funny. He was breathing shallow and making this squeaking noise. We called the doctor over and they decided to give him a breathing treatment to break up the gunk in his throat. That seemed to do the trick and he was fine after that. We followed up on a couple of issues Brody had going on. The first being the blood clot in his shoulder. They repeated the ultrasound and it is still there. He has been getting shots twice a day for six weeks, and this just means he will continue those shots for 6 more weeks. I spoke with the doctor and they aren't too concerned with the fact that it is still there. They said the body has to get rid of it on its own and the fact that he was so sick for so long, the body just wasn't able to take care of that. His other issue was his vocal chord. They did an exam of that after the breathing episode and it is still paralyzed. Again, they aren't too concerned with it at this point and feel that it will heal on its own with time. They said it could take 3-4 months and that the Ear, Nose and Throat people will likely want to follow up with him on an out patient basis (I love those words).The issue with the vocal chord could be some of the reason he has been having issues with gagging so much, though that is even getting better. 

Our mountain to climb now is our feeding. Over the week we have been working on increasing feeds and now we are at about an ounce and a half every three hours. He has been having issues with spitting up, but again, not overly concerned with it at this point. The occupational therapist comes and works with him once a day on bottle feeding and some days are better than others. When he is in the mood to take a bottle he has worked himself up to taking about half of it by bottle before he wears himself out. I never realized how much energy it took for a baby to eat. I guess that is why they usually pass out afterwards. 

Brody is starting to show signs of his temper in the form of holding his breath. There have been 4 different occasions now where he has been throwing a fit and while I am trying to calm him down I notice his heart rate and breathing drops. When he does this he clenches his fists out and becomes stiff and won't break his stare. I blow in his face and talk to him until finally he snaps out of it. He hasn't held his breath to the point of passing out yet, but he does it long enough to turn purple and scare the crap out of me. He is definitely going to  need to stop that like NOW. It breaks me out into a cold sweat and takes me just as long to recover. 

The word on the unit is that Brody should be moving to 15 this week (though I have been hearing that for about 2 weeks now). They brought a new baby in and had to put him in Brody's spot for all the hookups, so Brody is camped out in the middle of 2 babies in a room only made for 2 babies. Space is very tight and makes an already difficult situation that much more uncomfortable. 

Brody is definitely getting acquainted with being held. I wouldn't say he is to the point of being spoiled yet because I do just let him be and don't want to disturb him too much. Plus I know when I am not here there isn't going to be anyone to just sit and hold him, so I don't want to start that habit. But, we have had lots of snuggle time and he sleeps so good when he is being held. When he is in the crib he won't sleep consistently for a length of time. He is much more restless and machines keep him in and out of sleep. When I hold him, he is out to the point where nothing wakes him up. Truly the best feeling. Brody is now 2 months old and weighs a whopping 6lbs 8oz! I call him my two month old preemie. Still in preemie diapers. Haven't got to put clothes on him yet, but hopefully he will lose his IV line this week, so we can start playing dress up. 

Snuggle time with Mommy

Tried out a bouncer this week. He didn't quite know what to think. I always think he is looking bigger until I put him next to something like this. 

Sleeps so peaceful in my arms. I could stay like this forever. 

Watching Ohio State with Daddy

This kid has been waiting so long to see Brody awake and get to hold him. 

See what I mean! Out like a light! 

 

Awake one second...

and out the next

Still have a bit of growing to do before he can wear his Clay Matthews jersey with Daddy. (Jersey is 3-6 months, hoping we will fit into it at some point this football season). 

Moving Right Along- Week 8

We have managed to come a long way just in this last week. Our doctor this week was very proactive and was ready to get this show on the road. He talked to me on Monday saying that he felt we were in the clear and were ready to really make some progress forward. It seemed like all week, he wasn't willing to do anything that wasn't necessary. Wednesday he was taken off his C-PAP machine and placed on a regular nasal cannula that had a low flow of oxygen going through his nose (We were able to skip the high flow nasa cannula since the doctor didn't think it was necessary). The big bonus here, after 4 long weeks I finally got to hold my baby! What an amazing feeling to have him in my arms looking up at me. On Thursday, we repositioned Brody's feeding tube from his mouth to his nose. When we did this we conducted a trial to see how he did without any extra oxygen and he did great. No more nasal cannula, no more breathing assistance! Now that there was nothing in his mouth, we would be able to start introducing bottle feeding. Once a day Brody will be working with an occupational therapist to learn how to eat. Pretty much his entire life he has been on feeding tubes or IV nutrition only. What we are finding is that this is going to be a slow and steady process. A few times, Brody has tried working with a bottle, but never for an extended period of time. Only one or two feedings over a couple of days, so this is entirely new to him. He has always been able to take a pacifier which is a good sign. While on the C-PAP machine, Brody's gag reflex became very sensitive due to the high pressure of oxygen being forced up his nose. Now, he is pretty sensitive to everything. Some days he does better than others with attempting the bottle. We are slowly increasing his feeds. We want to make sure he tolerates them well and for the most part, he seems to be. He has worked his way up to a full ounce of formula every three hours (he is still getting nutrition through his IV line). He has a lot of drainage and mucus that he is working through. He coughs the stuff up, but then doesn't quite know what to do with it and ends up gagging which ends up making him throw up. We have found that putting him on his belly while he eats is helping with the issue. He actually really likes it and will sleep really good on his belly.

Medically, Brody is doing awesome and has come a long way. Our biggest obstacle at this point is his feeding. Over the next week we are going to be working our way up to full feeds. Once we are there, we should be able to transition him over to breast milk. Boy do I have a stash of that. The milk bank told me I needed to take some of my bottles home to make room for other mommies. Mom and Dad gave us their deep freezer so we could store it all and it's already full. The question of the day remains, when do we get to leave CVICU? It seems that we will be moving somewhere this week, we just don't know where. The debate is whether we will go to floor 15 which is the step down unit where Brody gets his own room and I get to stay with him. The other option is sending him to NICU. Here it is the same set up we currently have just a bit calmer. In NICU they are really good about getting babies to eat and grow and that is what we need. I selfishly want them to choose 15 so I can stay with him and no longer have to come and just visit, but at the end of the day, it's whatever is best for him. If we can tackle this eating and growing thing, we should be able to come home soon. 

No more C-PAP!

The brief transition minute where he had nothing on his face. Haven't seen him like that since before surgery.

Finally, in my arms!

Tummy time!

Sleeping in a pile of his drool

Trying to learn this whole eating thing