Gabby's Medical Journey Part 3

As I said in the last post, Gabby came off ECMO after a week. I was finally able to hold her after she came off the ventilator a couple of days later. She remained in the ICU for about a week after she came off ECMO then went to the floor then came home 3 1/2 weeks after she was admitted. She came home on several medications and a tube feeding. The tube feedings only lasted less than a month. She needed those so she could get enough calories to heal from her surgery and grow at the same time.

At first, we had fairly frequent clinic visits. Those became fewer and fewer as time went on. She slowly recovered from what is now referred to as a "stormy course." She's on absolutely no heart medications. What we are looking at now is that she has no valve between her right ventricle and the artery that goes to her lungs. She will eventually need a valve placed there, but not yet. They don't like doing it until they must because once they "open that door" she will need the valve replaced about every 10 years or so. She will also need to have the stent that is in her left pulmonary artery removed, and the artery will need to be repaired again. The stent has been expanded as far as it will go, and it will eventually not be big enough. She will need lifelong follow-up with a cardiologist, hopefully one who specializes in adults with congenital heart defects.

Gabby has also had problems with meeting her gross motor milestones on time. That's things like crawling, walking, jumping, etc. She's been in physical therapy off and on for more than a year to address those issues. She was in therapy through the school district for a few months and made great strides as a result. When she started in Feb. or March, she couldn't jump. Now she jumps all over the place. She will probably go back in the fall. I've also had her in gymnastics through the YMCA which has been a huge help. Between the two things, she really improved. This summer I have her and Sarah enrolled in beginning swim lessons.

Overall, she's doing very well, especially considering what she went through as a baby. I keep hearing from her daycare that she's really smart, and I can see it as well. She can keep herself quietly occupied playing by herself for a long time, especially for a 3 year old. We're fortunate that she hasn't had any problems beyond the gross motor stuff, and she adapts to that and is making improvements. I am so thankful for that.