Today was Baby I's five month cardiologist appointment. Every month, we go in expecting to hear its time for surgery and each month we are both relieved and scared that it is postponed another month. Relieved because it means she is doing okay, considering, and that there is still hope that her heart will repair itself and she will never face the trauma of surgery. Scared because it means another month of watching her struggle to breathe, of worrying about every cough and gasp and ounce, of anxiously watching to see if she begins to turn blue. Surgery could fix all of that, could ease her breathing, help her gain weight, give her a normal thump heartbeat instead of her swish-swish-swish beat.
This month, there is no postponing one more month.
Good news first--her ASD (which was medium sized at birth) is almost completely closed! That one has steadily shrank and the cardio thinks the surgeons may place one stitch in it to pull it closed and help it seal the rest of the way (or it may be completely closed on its own by the time she gets to surgery). One less thing to worry about :)
Her VSD, however, still has not budged. It is oval shaped, 5x9mm, and is the defect causing most of the problems. She has been on generic Lasix and Aldactone since she was two months old to help reduce the fluid buildup on her heart and lungs but its worse. He upped her dose of Lasix to try and help her out until surgery but the left side of her heart is now enlarged.
The artery that wasn't growing properly at her last echo? Even worse now :/ It is the Pulmonary Artery leading to right lung (or was it the left? I left my notes in the van and the husband took it to work) and it is half the size of the Artery leading to the other lung. If they both were small or large, it wouldn't be as big a deal but the large difference in their sizes is a problem. He thinks the surgeons may want to do a cathartization before surgery but they may decide to repair it while she is in surgery. One more thing to wait and worry about.....
The last thing he told us is that she has an extra vein leading into the heart that shouldn't be a problem, it will just mean they have to place an extra line or something during surgery for bypass. He said that during pregnancy, there are four veins leading in and at birth, they pair up and fuse together to form just two veins. Two of them did fuse for Baby I but the other two remain separated. I have a new thing to obsessively research while I wait ;-)
Oh, and the other worry was the fact that she has completely fallen off the growth chart. She was up to twelve pounds nine ounces, not quite one pound from her last visit. Every ounce was hard earned but she just can't get enough of them and feeding has become increasingly difficult for her between the reflux and how tired she gets.
Next step is for Dr E to send Baby I's file and echo pictures and EKGs to the surgery committee for review. The committee meets on Tuesdays at the Children's Hospital so we have at least a week before we hear anything, possibly two if the surgeons are called into surgery and can't make the next meeting. Then we will get a call to schedule any needed tests/procedures before surgery and find out how soon the surgeons want to operate.
It just doesn't feel real.