At 25 weeks pregnant one of our twins was diagnosed with Pulmonary Atresia with Intact Ventricular Septum. We were devastated. Since then, she was born with immature lungs and had to be sent to Children's Hospital of Pittsburgh right away. They took great care of her, but within 12 hours of life, she was so critical, they had to do a heart cath. That cath pierced the intact septum and allowed bloo
d to flow through her Pulmonary Artery. It was a success! But then, she developed a horrible clot that threatened her leg. They had to perform a Fashiotomy to relieve pressures in her leg and removed dead muscle tissue. From here, things only got better. She started to improve and get stronger. She had her open heart surgery on 12/16 and did incredible. On 2/14, she had a Gtube placed due to her not eating sufficiently on her own. After 133 days in the hospital, she finally came home for the first time on 2/25. Life has been hectic since then, but thank GOD, we have had no more illnesses or admissions. She gets therapies about 2-3 times a week and we head back to CHP about 4 times a month for appointments. She is still trying to learn how to eat and has low tone, but is continuously improving on her own time schedule. Only time will tell how far she will go, but everyone that meets her falls right in love and thinks she is going to go places no one could ever imagine! :)
Hopefully, we are through the worst, but still have a long way to go. Thank you for joining us in watching our beautiful girl grow and thrive.
1/28/14
Update: I just reread this and I can't believe I forgot to mention her stroke!!! At about 5 weeks old, she had a major seizure and it was discovered that she had a sign ificant stroke on her left side. This is the cause of all of the therapies and low tone, etc. She is doing fantastic, though! She is no longer having seizures, is off of the antiseizure meds and doesnt need to see neuro again until age 2. She is coming along fast!
6/17/14
Update: Hope is doing great!! She is eating like a piglet! Really starting to catch on to the drinking, too. Can drink from all cups, straws, open cups, you name it, but we just need to work on volume, then we can start thinking about getting rid of that tube. We are up to about 7 therapy sessions a week and they are helping her so much. She can sit unassisted, get to sitting on her own, roll from belly to back, stand at something and play, hold the crawling position and spin in a circle on her rear end. These are major strides! Still working hard on walking/crawling and using her affected arm. That's coming slowly, but surely. Her leg that was injured by the clot is growing and seems like she is going to be able to use it functionally in some manner, but we aren't sure what, yet. She had eye surgey to correct a lazy eye, which went well, but doesn't seem to have worked, ugh. She is starting to talk! Says momma, dada, hi, thank you, moo, as of right now. She is amazing. Growing like a weed and doing so much typical toddler stuff. I love every minute of it, even the annoying parts, lol!!
