Everything is going well and nothing has been too different from what we expected pre-birth. His condition is good and he is very stable. All the nurses say he is an easy baby because he is so calm and likes to sleep. He has actually put on some weight and now weighs about 3 ounces above his birth weight. The nurse said that most of that is simply retention, and he will start to lose weight pretty soon. He has been making lots of poops and he has nice, fluffy brown hair! The nurses and doctors at CHLA have all been great so far. Joey is currently in a large shared room with another infant girl, as the entire CTICU is filled up. He will, more than likely, get a private room during surgery recovery. Jamie and I spend our days in the room with him. We try to make it to the hospital each morning for morning rounds so that we can check in with the night nurse and get his full update from the CTICU medical team. The cardiologists don't have set rounds but we have been able to catch some of their check-ins.
He is still on the ventilator and after being sedated for an MRI yesterday, there has been only a little progress towards being able to wean him off. He was even sedated today a couple more times for various procedures, one being getting a PICC line so that they don't have to rely on his IVs for everything. They will continue to try to wean. It would be nice to get him extubated because then we would be able to hold him and finally see his little face unobstructed. (We do know that he definitely has his mommy's nose!) It will, eventually, get to a point where we will be too close to his surgery date, the extubation just wouldn't make sense (because it would go right back in for the surgery), so we are hoping the weaning takes a turn for the better. Today they did pull the tube out by half a centimeter. They did this because the top lobe of his right lung is slightly collapsed which may be caused by the tube being in just a little to far. They gave him a little sedation and pulled it up today, we will see if that changes anything.
He has had two echos and the diagnosis of his heart is currently better than expected! They are still in agreement that the balloon septostomy is not needed at this time. He has two small atrial holes that seem to be staying open for now, and with those and his VSD enough mixing is happening that his oxygen levels aren't too low. The septostomy is not fully off the table, and although it is a somewhat minor procedure (compared to everything else), it is still one less procedure that he has to have! During the fetal echos, he was diagnosed with Transposition of the Great Arteries and a VSD, those diagnoses were spot on. However, it seems like the Pulmonary Stenosis that they believed he had could be something different. If he has stenosis at all, it is minimal. But they have found that his pulmonary valve is bicuspid instead of tricuspid (two flaps that open and close instead of three). And while this is pretty rare, it should not cause any major issues, or change the surgery plan. So this is good news! It seems as though he may only need the Arterial Switch Operation, and not other of the alternatives that would require follow up open heart surgeries later in life. We are keeping our fingers crossed!
It is also good news that the possible malrotation of his intestines that they saw in his fetal MRI is not present. He is currently being fed via IV, and if he is able to get extubated before surgery he already has a tube in place for him to be fed some of my breast milk (which is finally beginning to come in!) We are hoping that he will get some nutrition to his gut before surgery. If not, our hope is to be able to at least swab some of my colostrum in his mouth.
Besides just keeping up with the things mentioned above, the only thing we are truly waiting on is a set surgery date and a definite answer as to which operation he will have. The Monday date that was originally mentioned by the surgeon last week will not be the day... our surgeon has unfortunately not been here this week, so all we have heard from other doctors is that the surgery is tentatively set for Thursday. That would make Joey eight days old. Since we haven't really been able to discuss this with anyone, I am keeping my hopes high in thinking that they can wait longer because he is doing well and his condition is not as dire as they had previously thought. This also gives him a few extra days to get big and strong before surgery. We were just hoping to get a jump on the procedure so that we can go home that much earlier, but a big, strong boy going in to surgery will hopefully have a very speedy recovery.
As for me, I am recovering very well. But I think it feels easier for me because I have such a great motivation from Joey to be there for him and great support from Jamie. Next week we are renting an apartment about one mile from the hospital so that our commute is easier and we can have a place closer to shower, nap and eat. It should make things a lot easier. Thank you to everyone for the messages, texts and calls, we hope that the hospital lifts the visiting ban soon so that our family and friends can come meet Baby Joey!
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