Its been an insane 10 days.
Two days ago, we were being transferred to the specialty children's hospital. Life Flight was on its way, and we were terrified for our SweetPea's prognosis. In walked the social worker, and the neonatologist, both looked like it was Christmas. They did a follow-up heart echo and belly ultrasound to see how severe the heterotaxy syndrome was. The results from those follow-ups showed NO heterotaxy. We kept listing things they had told us SweetPea had - and the doctor would say "No, she doesn't have that either!" The social worker looked like she was trying very hard to not jump up and down in happiness. We didn't believe them, until the Neonatologist told us that she ordered a 3rd echo, just to make sure, and it was clear of heterotaxy too. She then called the radiologists up at the children's hospital, and told them to figure it out so she could tell the family (they were the ones who read the first Echo and gave the diagnosis). The specialists don't have an explanation, but are 100% sure that SweetPea does not have heterotaxy syndrome. The neonatologist ripped up the transfer orders, and cancelled Life Flight. We got to stay where we were - which is wonderful to us! The children's hospital is wonderful, but a very busy, bright, and noisy NICU environment. The hospital we are at, we have a private room in the NICU, and its very calm and soothing, with soft lighting and very little noise. Its much more nurturing of an environment.
SweetPea still has a couple of issues - her Respiratory Distress Syndrome, a hole between the ventricles of her heart and an oversized muscle in the heart. She is on medication for the muscle, and its working correctly now. The hole between the ventricles should close in the next few months - we will have an echo within her first year to check on it. The main issue now is the respiratory distress syndrome - which will be okay with a little time (this is the same thing our other two NICU babies had)
It's odd to be so grateful for the things SweetPea is dealing with, but we are just so thankful that we don't need to face heterotaxy syndrome, and our hearts hurt so much for those parents who do face it and worry about it with their little baby.
SweetPea is slowly improving with her lungs - she went off the cpap last night, and on to high-flow. She still needs to wean off high-flow, and onto low-flow before she can eat orally. But, each little step is an improvement, and we are grateful for the little improvements we get to celebrate ...