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!