Here We Go Again- Week 15 & 16

Our two weeks at home have been busy with adjustments (hince no blog update). I told Trey that first night back there would two things I would never take for granted, the softness of our bed and our tv. We all settled in quite nicely. Though I had been getting up to feed Brody in the hospital, for some reason I was way more tired doing it all at home. Brody adjusted quite nicely. He took off with his feeding and was a real rock star. Within one week we were able to take out the feeding tube and let him do his thing. We slowly were taking him out a little bit, but not too much. We still didn't want to expose him to too many people for the risk of getting sick. Still it was nice to start to live a normal life outside of the hospital. 

We had been going to multiple appointments a week trying to let everyone take a look at him and monitor him. That first week we saw the pediatrician and hematology( blood clot people). These were my first trips out in public with him and I was doing it on my own. Lots of work trying to hold him because he doesn't want to be put down and get bottles together and push a stroller. The second week we had another pediatrician appointment and a cardiology appointment. The cardioogist appointment was a little overwhelming. Our cardiologist is the same dr who did my echos when I was pregnant, so she knew our background. She said the night before our appointment she spent quite a bit of time reading his file from his hospital stay since she had been gone most of the summer. She told me that his echo was conerning particularly that leaky aortic valve. She said that if someone came in off the street with a heart looking like that she would be admitting them to the hospital. Not the most comforting thing to hear. We talked for quite a bit and she said she would be getting with our surgeon to discuss his outlook and plan for Brody so she would know how best to monitor us. She said she would be monitoring him very closely which meant we would be seeing a lot of each other as she wasn't comfortable going more than 3-4 weeks without seeing him. I could live with that and would actually feel better knowing he was being so closely monitored. 

Well, over the weekend Brody started slacking on his feeds. There isn't a whole lot of wiggle room since we are trying so hard to get him to catch up on his growth. By Monday, it had gotten to the point where he was finishing less than half a bottle (and we now didn't have a feeding tube to give him the rest). The cardiologist had said she wanted us to call with the slightest sign of funny business, so we decided to give her a call. They wanted us to go ahead and bring him in to be checked out and deep down I knew what that meant. 

We have now been admitted to the hospital again. For now, they will be putting the feeding tube back in and monitoring him, but the surgeon and the rest of the cardiologist team will be developing and implamenting a plan for that aortic valve. Trey and I feel comfortable with him being here because he just didn't seem right this last weekend, but are very nervous and scared for the road ahead. I am not ready to send my baby off for his second open heart surgery. I really was hoping we would have more time in between, but it doesn't seem like that will be the case. I am trying to stay calm and not panic, but it's very scary. So, here we go again. So many people have been praying for us along the way and we desparately need the prayers to continue. I don't know exactly what will be going on and how quickly things will happen, but I will try and update as soon as I have more information. Thanks in advance for the love and support. 

First Sunday Football Watching! Guess who got him dressed in the morning!

Snuggle time with Daddy

He tolerates being put down to play for all of about 10 minutes

Tummy Time

I love when we get to snuggle like this. You know he is sleeping good when the padifier falls out and his mouth hangs open. 

There's No Place Like Home- week 14

We have finally made it home! It was a very long and slow week just working on our feeds. Brody had a couple of good days with it that left the doctor wanting to give him more time. We all sat down and had a heart to heart and we basically told the doctor we were ready to go home and that everything we were doing in the hospital we could do at home. We all agreed that Brody still had a lot of time left for working on his bottle feeding. It has and continues to be a very slow process. He will have days where he totally rocks it drinking 3-4 complete bottles and then others days he barely takes half. It can make for a very frustrating time. I found myself getting very emotional this week just becasuse I was done with being in the hospital. I was ready to bring Brody home and have the three of us together. My sister came by to visit Brody and sat with him so Trey could take me out to dinner. It was really weird being on the outside after being locked up in a hospital room for so long. It was nice to do something a little bit normal for a change.

The doctor spent a majority of the week chasing down our surgeon to get his approval. He wasn't crazy about sending us home with the NG feeding tube, but agreed in the end. We were told about the possibility of going home on Friday. We weren't holding our breathe, but were prepared should they give us the green light. They ended up keeping us through the weekend so they could have time to sort things out and get us the supplies that we would need. Finally, Monday came which was going to be our day. We spent the ENTIRE day waiting. I learned how to put his tube in should it fall out or need to be replaced. I was able to get it in on the very first try. I was quite proud of myself and felt confident then that I would be able to take care of him at home. We then had to wait for his feeding pump to arrive and for someone to show me how to use it. No issues there. We ordered his meds and his shots. Practiced drawing up his shots and were wating on a decision to be made about one of his meds. A long story short, they decided they wanted to take him off one of his meds and switch him to a once a month breathing treatment. His first treatment would be that day. It was already 6pm and we were nervous about how long everything would take and if they would still let us leave late. Finally, about 8:30 pm, we were making our way out of Texas Children's Hospital. After 10 weeks in ICU and 4 weeks on the cardio floor, we were finally getting to take our baby home. I can't even begin to describe the excitement (and nerves) Trey and I had, but we felt like life was just begining. 

Our first night home was great. We all got to bed a little late because it was late before we got home and then we had to get ourselves organized with all his meds and his pump. Let me just say, I absoltely hate his feeding pump. I don't feel like it is intended for Brody's type of feeding where he feeds by mouth and only finishes what he doesnt take by pump. It's so frustrating and I pray that Brody will have great success with his bottles in the very near future so we can throw that thing out the window. 

Brody's follow up with his different doctors will keep me busy. He meets with 4 different doctors over the next three weeks. These will eventually calm down, but these next few months will be full of appointments and follow ups. 

This blog has really gotten me through a lot. It has been my way of sharing our story and helping myself cope with everything that is going on. I haven't sat down yet and read through them all to see how far we have come, but I would like to in the near future. Those initial posts when we were given such a grim outcome make me a bit emotional, but it is amazing to see how through the power of prayer and the love and support of our friends and family we are off to a great start on this journey. I know Brody's surgical road is not done, but hopefully we can put off his next surgery for a long, long time. Thank you to everyone who has walked with us and carried us through this crazy journey. No words could ever be enough to express how much it means to the three of us. I go to bed every night knowing my child is greatly loved by so many. 

This is how some of our feeding sessions turn out

Three months old and still the size of a lot of newborns

This was when I told him the surgeon agreed to let us go home. 

And we're off! 

 

We decided to surprise my mom instead of telling her we were released. You can hear her excitement through the door! Love it!

Eat, Eat, Eat- Week 13

I really never thought that we would still be here after 13 weeks, but here we are. The only thing we are working on is eating and Brody has made some decent progress. At Brody's midnight feed on Wednesday, for the very first time, Brody finished his entire bottle. I was super excited and couldn't wait to share the news with the doctors. The doctors were excited with the progress and wanted to see how he did the rest of the week to still try and determine what type of feeding tube he would go home with. After that he sort of stalled out the rest of the week taking less than half from the bottle. The doctor was going to give it through the weekend and then we were going to buckle down and really make some decisions on Monday. I have to admit, I spent this entire week pretty frustrated. I'm exausted and I just want us to go home so we can start our normal life together. Living in a hospital is really getting old. I miss being at home. Well in true Brody fashion, he decieded to wait until the very end of the week to show any sign of progress towards his bottle feeds. On Sunday, he finished 3 bottles during consecutive feedings. I was so excited and could barely sleep the rest of the night. This also made us a little nervous that they are going to come back and say "Oh since Brody is doing better, let's give him a little more time" though we all know it will still be a while before he is on full feeds from the bottle. Since Brody is showing good progress towards his bottle feeds we are hoping they agree to send us home with an NG feeding tube which is what he has now. There are some risks with this type of feeding tube, but I am confident we will be able to manage those. Since we all are getting the feeling like that will happen, I spent the last weekend going through nursing school. They are teaching me about pushing meds through the tube (though Brody takes most by mouth), flushing the line, working the pump, checking to make sure the tube is still in the right place etc. I feel a lot more empowered since I am able to do more for him. The only thing I have yet to do is actually put the tube in and that's kinda important. Once we get the green light that we will get to go home with the NG tube, that will be my next lesson. We are starting to take care of the essential things needed before going home. I attended a class on giving him his shots for his blood clot. Tomorrow we have our car seat check. After that, we just need a decision to be made. I'm very anxious and ready to go. Hopefully I will get to give my next Brody update from home!

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).