Things are going fairly well. They still won't allow me to feed him (they don't want to make his heart do the extra work of digestion), so that means his surgery will go higher up on the priority list. Gavin is not a happy camper, but the medications have caused him to be drowsy and sleep most of the time. It's pretty heart-wrenching. But I have good nurses. So far we are OK.
Tidbits of info:
Earlier today I was told he wouldn't be assigned a surgery date until Monday. Now I think I will know tomorrow when his surgery will be. The medication he's on is Prostoglandin--it is succeeding in opening the ductus artery more, which is probably giving his heart a break and lowering his blood pressure. They don't know what causes a "coarctation"--but one idea is that when the fetal ductus artery closes after birth, it appears possible that it sort of "sucks in" the wall of the aorta on the other side. In Gavin's case, his heart seemed to have "saved" itself, by leaving the artery open. The severity of his aorta blockage is an "8" on a 1-10 scale. Almost the entire aorta is blocked. The only way Gavin's blood got through was through that open artery, which is supposed to automatically close upon birth. All of his nurses have told me with a bit of wonder, "He's very lucky." Thank goodness our pediatrician took action when he heard the murmur. If he hadn't, they tell me he would have either become very sick, as his extremities slowly got less and less oxygen until his kidneys shut down OR he could have suddenly died if the artery had decided to go ahead and close.
For those now worrying about their babies and wondering what symptoms he had, please don't worry, this is so rare. But my sister-in-law Kirsten was wondering, so in a nutshell, this is how his diagnosis went: a heart murmer and retractive breathing (inhaling deeply under the ribcage) were detected. Blood pressure was higher than desired (resulting in a femoral pulse that is hard to detect). He's not an enthusiastic nurser--possibly because it expends too much energy. (The cold he had is unrelated, by the way). With these symptoms, the x-ray was ordered, and then the symptoms of enlarged heart tissue and fluid in the lungs triggered the ECHO (fancy ultrasound) of his heart--and whalaa--he was diagnosed.
Thanks for all your prayers and emails, and offers of help at home. We are blessed!