Jay's surgery day was the longest of my life. But the week itself, was the longest week of my life. I was feeling the pain from labor and delivery. I had been going back and forth between the house and the hospital, barely sleeping in either place, taking the dogs on a walk around the block, basically severely over-doing it. It was impossible to rest as much as I needed to. That's not a luxury NICU moms get. We have to walk all around the hospital for meals, for pumping, for the bathroom, sleep in chairs, take all your supplies with you everywhere. I tried to plan my trips outside of Jay's PICU room well: bathroom to change/ clean up, brush my teeth, down to the cafeteria to eat, outside for fresh air and phone calls and back up to the room. When I got home I had to unload, repack, fit in pumping, playing with the dogs, shower, putting away another package that got sent to us, keep up with bills, cleaning, and meals. Kyle and I tried to eat as much from home as possible. The hospital food was expensive and didn't taste great, not to mention my allergy free options were slim.
Jay was sedated for the most part for quite a few days and it was just exhausting sitting there watching his team titrate meds left and right, listening to alarms, and always being scared, longing to hold my baby. For the first 48 hours he was hooked up to an EEG machine to monitor his brain activity post-operatively. It was actually really cool to see his brain react on the screen when we would talk to him. I taking a class at the time to go back to school to be a Naturopathic Doctor. (Way more on my career change/path in other posts- school is currently on hold now.) I had a test Sunday night, his surgery was Monday, a lab final Tuesday, and a lecture Wednesday. Tuesday and Wednesday I had things to study to pass my time but there were so many people in and out of his room it made it hard to focus. But those two days luckily passed quickly. (In case you were curious, I failed the final, but passed the class, and that's all I cared about.) I was really struggling with pumping during this time, it was extremely uncomfortable. The lactation consultants from the hospital were coming to see me but it wasn't much help. A few girls I went to nursing school with work at that hospital and luckily were able to come help me. I'll have a detailed post about exclusive pumping soon, and LOTS of tips!
Fluid overloaded, looking like an old Italian Man ready for his cigar. Post op day 2.
Saturday morning during shift change (7:30) he was very restless. His nurse called the
doctor and said "do you want me to give him a bolus of pain meds, or are we going to extubate him?" I went to the bathroom and to eat real quick because I was prepared to be sitting holding Jay most of the day, and by time I got back he was already extubated! He had been so cranky, and once they were done he was just looking at all of us like "okay about time guys".
I got to sit with him and do skin to skin for quite a while. He did okay breathing until he fell asleep and then he needed some oxygen support for a day or two with sleeping. I didn't want to give him up but of course I had to pump because he was still unable to nurse. The ear/nose/ throat doctors came to put a scope in his nose to check his throat to make sure he could safely swallow to eat by mouth. OT came to do some suck and swallow exercises and showed us how to do them to prepare to feed him Sunday morning. Saturday afternoon/evening we started giving him small amounts of breastmilk super slowly into his NG tube in his nose. Unfortunately overnight, his night nurse noticed that the milk they were giving him was leaking out and showing up in his chest tube. This is a complication known as chylothorax. I will go into more detail on this in the next post. He fit an algorithm to not eat for at least 7 days for it to heal. Monday we got him a new PICC line to stay on TPN & lipids so he was ready to graduate from the PICU Tuesday morning!