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!