Still in the NICU

Well, it is Sunday afternoon and Steph and I have spent the morning at the hospital in the NICU with Isaac. He seems to be recovering really well from his surgery. The ENT (ear, nose, and throat) doctors operated on his nose on Friday to remove excess bone that was blocking the nasal passageways and making it difficult for him to breathe. Before the surgery he had an MRI of his brain. The condition he has, called Congenital Pyriform Aperture Stenosis, can sometimes be associated with other developmental problems, especially in the brain. Some of those abnormalities include having only one central incisor instead of two, Holoprosencephaly (which is when the brain doesn’t split properly into the right and left halves but stays one big piece), and problems with parts of the brain called the hypothalamus and the pituitary (which controls release of several hormones, including thyroid hormone, growth hormone, and Cortisol – which helps to control blood pressure – and others). The MRI of the brain came back essentially negative, so the doctors are going to run a few blood tests probably tomorrow, after Isaac has had a few days to recover from the surgery.

Congenital Pyriform Aperture Stenosis is a recently described condition that occurs before birth. It is a pretty rare condition, though there is not an exact number of how often it occurs, since it has only been described since 1988. There is another condition, called Choanal Atresia, which is similar to what Isaac has, but a little worse, since in this condition the entire nasal passage is blocked off and the baby can’t breathe through their nose at all, so they need surgery right away. The doctors think that there may have been many more babies before 1988 that had what Isaac has, but because the CT scanning technology wasn’t as good back then, it was not detected properly and was misdiagnosed as the Choanal Atresia, and treated with the same kind of surgery.

As part of the MRI study and surgery, Isaac had to have a breathing tube put down his throat (intubated), which Steph and I were able to watch Friday morning. I have seen many times when people had to be intubated, but it is a lot different when it is being done on your own child, especially at a teaching hospital, where they let the resident try first, and then the fellow, and then the attending doctor if the others are unsuccessful (which happened in Isaac’s case). According to the doctors, Isaac’s surgery went very well, and he did well overnight on Friday. Steph’s mom had arrived in town Thursday night and spent all day Friday with the other boys, since we had been in the hospital all day for Isaac’s surgery, so we thought it would be good to spend the night with our other children. There was a ward Halloween party, so we took them to that, with Kolby dressed as Tigger, Eli as a dinosaur, and Camden as a lion. They were so cute and had so much fun trick or treating and getting so much candy. It was nice to get them out of the house and spend some time together.

We spent the good part of Saturday morning cleaning up the house and then Steph and her mom went grocery shopping since the cupboards were bare after us being gone for the few days at the hospital. Isaac got the breathing tube out in the morning, so once they got home, we got the boys all cleaned up and took them over to the hospital to meet their new baby brother. We weren’t sure what to expect, and the boys ended up having a hard time, since the NICU is not an ideal place for loud, active little boys who like to touch everything they see and don’t like to sit still for more than 2 seconds (although for the first 10 minutes or so while they were first meeting Isaac, Kolby and Eli at least were good and well behaved and enjoyed seeing him and asking questions about how long it would be until he came home). The nurses had tried to feed Isaac some of Steph’s milk that we have saved for him just before we got there, and they said he seemed to enjoy it, but by the time the boys were done visiting with him, he was struggling quite a bit to breathe. The nurse tried to turn him and suction in his nose and mouth to see if that would help, but his tongue kept sticking to the roof of his mouth, blocking his airway, so they finally had to call the ENT doctors to come take a look. We had to get the other boys some food, so the ENT doctor called us later and said that after looking down Isaac’s throat with a scope, it seems that he had some acid reflux after getting the milk. She said this is common in babies, but with the other stresses of the surgery, having a tube down his throat, swelling in his lip, and tubes in his nose, the combination probably put him over the top and caused the throat to close. They gave him some morphine, put an oral airway in (a piece of plastic that is curved and rests just over the tongue to keep it from falling back into the throat and blocking the airway) and started Isaac on some acid blocking medicines. He seemed to calm down a lot after that, especially with the oral airway, so they have left that in for now to let him continue to wake up from the anesthesia and recover from the surgery. He is getting nutrition through an IV and the doctors said we will wait until tomorrow before trying to feed him again.

This morning Stephanie and I each got to hold him for a long time and he was very happy. He even tried to open his eyes a few times for us, though overall he is still very sleepy, and rightly so. And it was really nice to finally actually be able to sit down and hold him like a normal baby. The doctors had originally hoped (very optimistically) that Isaac would be able to go home tomorrow, but given how things have gone a little slower so far, it will probably be a few more days in the NICU, although the doctors still think he is healing nicely and will make a full recovery in the next few days.