I am sitting here in the dark while you and your dad recover from the day's events. Today was your scheduled catheter procedure at Primary Children's Medical Center in Salt Lake City to close your atrial septal defect (ASD- aka the hole in your little heart). We came in at 7am and surgery began shortly after 8:30am. The docs that were with you were excellent,but handing you to the nurse and walking away was one of the hardest things I have ever done. About two hours later our pager went off and we rushed to the cath lab for an update from the docs while they started to wake you. They told us you did beautifully. I was glad he started with that. Then he proceeded to explain they had found some unexpected pulmonary vein stenosis during the procedure. Pulmonary vein stenosis is basically the narrowing of veins going from your lungs to your heart, having largely to do with your prematurity, though not much more is known about their cause. Because your stenosis may continue to progress, the docs ultimately decided not to close the hole. Doing so would make future surgery for your stenosis (if required) open heart and extremely difficult at that. Measurments and calculations done also indicate that there is not enough shunting of blood from the hole to cause your symptoms (i.e. slow growth). That was great news. They believe it is still the poor condition of your lungs that still need much healing and growth that probably contributes to your slow growth. The plan is to return to Primary's in another three months for a sedated echo to check the progression of the stenosis in your veins while doing some monitoring of your lung stats at home and a 24 hour test. They said that things would be good if your stenosis halts progression, but that if it were to continue, things would not be good at all. I guess we should be used to surprises by now. After we walked out of the room, we paused for just a moment. Long enough for a good sob and silent prayer. After regaining some composure (though apparently not enough since I was offered my very own box of tissues- twice) we relayed info to grandparents and waited patiently in post-op to see you. And in in the hospital we still remain and will remain until 5pm if you are doing well enough. While your case could be far more terrible and dire, I had hoped that this would be a big step in your recovery. But that is just not to be. Sometimes it feels as though we are one step away from getting you healthy only to be surprised with yet another roadblock, another challenge to overcome. We get the idea in our heads that all troubles will come to an end with one more appointment, one more procedure, but it seems we are to learn to accept that the future is not always so simple and black and white. I haven't been able to snuggle with you all afternoon since you are supposed to lie flat so the spot on your groin/right leg is able to heal such that there won't be a bleeding problem. It is just killing me. All I want to do it pick you up and hold you close, but I have to wait just a few hours longer. I can hardly wait and I think you are really looking forward to it too.
Sofi, my heart is very full this afternoon. Full of love and fear and sadness and gratitude. We love you SO much.
