Wednesday - They did an Xray on Henry's lungs Wednesday morning and it showed a ton of fluid. He spent most of Wednesday on a pretty high flow of a higher percentage of oxygen than he's had the day before. Since he was still breathing so quickly and required so much oxygen, he couldn't nurse. So, they put a gavage tube up his nose and down into this belly in order to feed him. Unfortunately, I didn't have much by the way of breast milk on Wednesday so he only got a couple of mLs of colostrum that day. They gave him antibiotics preventatively but stopped them when his blood work came back clean (36 hours after he was born). They started an IV fluid drip to help keep him hydrated. I spent as much time as I could up in the NICU with Henry and by the end of the day I was able to walk all the way up to the unit by myself (no small feat for someone who'd just had a c-section the day before).
Thursday - They did a bili check on Thursday morning and his numbers were climbing. When we met with the doctor she told us she expected the numbers to continue to climb and that he would probably need phototherapy by Friday morning. The doctor said his respiratory rate was still too high to try nursing.
While we were taking to the doctor I asked her (through many tears) if there was anything wrong with Henry's lungs. I was so tired and terrified and confused that I was imagining all sorts of horrible things. I kept thinking something was wrong with him and that was why he was struggling to breathe. The doctor assured me that there was nothing wrong with him. That the fluid on his lungs was causing all of his problems and that it was only there because he had been born via c section without me going into labor. Once the fluid cleared out, he would be fine. This had been explained to me before but it was only here that I truly started to "get it." His lungs were fine and perfectly formed. They just had fluid on them that would eventually go away.
My milk came in by Thursday but I was struggling with pumping. I could tell I was full but I wasn't able to get anything from the pump probably because I hadn't actually nursed Henry. Breast pumps are great but they aren't magical. If your milk won't let down, then the pump can't get anything. My milk wouldn't let down because I couldn't put myself in the psychological space of actually nursing Henry. I met with the NICU lactation consultant and she gave me a lot of great tips to help me with pumping. By the end of the day I was managing to keep up with the amount of breast milk the doctor had prescribed him for each feeding (20 mL every three hours). I was pumping every three hours during the day and stretching that out to every four hours at night. On Thursday night I got up to pump around three and then decided to take my milk up to the NICU and visit with Henry. It was nice to be there in the middle of the night - much quieter and calmer than during the day.
Friday - They did another Xray on Friday and his lungs showed some improvement but were still full of fluid. His bili numbers were up as the doctor suspected they would be so the plan was to start him on phototherapy as soon as possible.
On Thursday night, my uncle (who had been sick for months) died and that meant my mom had to get to Midland to plan the funeral and help my grandmother. So, she came by the hospital Friday morning and we headed up to the NICU. Henry needed to stay under the lights as much as possible but the nurses were great when I explained the situation and got him out so mom could snuggle him before she had to hit the road.
He was still on a high rate and flow of oxygen on Friday and nursing was out once again. But my pumping continued to improve and I was actually able to get ahead of the amount of breast milk prescribed by the doctor (which they had upped at this point to 40 mL).
He spent Friday looking like this:
I probably could have gone home on Friday but our insurance allows for a four night hospital stay after a c section so we took advantage of that. Brian did head home that night, though, because Oliver was really missing him.
My night alone in the hospital got off to a rough start due to a less than stellar night nurse (who I had already had a bad experience with during my stay at 34 weeks) who didn't bring me my pain medication on time. My blood pressure got pretty high while I was waiting for the medication. But the rest of the night was fine. Once again, I pumped in the middle of the night and then headed up to the NICU to visit with Henry. He was doing really well overnight.
Saturday - I went up to the NICU first thing Saturday morning. When I got up there, the nurse asked me if I wanted to try and nurse him. I was shocked but she said she had been watching his respiratory rate and it was slow and steady. She got him out from under the lights and I got to nurse him for only the second time in his life. It was an amazing feeling. After that visit it became imperative for me to be there as much as possible when it was time for him to eat. I wanted to be sure to be there before they gave him milk through the feeding tube so that we could focus on trying to nurse. The doctor on Saturday said that he was doing good but that the oxygen and phototherapy needed to continue.
I was discharged Saturday morning (there is nothing stranger or sadder than walking out of the postpartum unit without a baby). After I was discharged I went up to the NICU, nursed Henry, and then we headed over to the baby shower that Lindsey and Kelly were throwing us (so much fun!). After a few hours at the shower, I was back at Henry's bedside to nurse him again. I skipped his 8 PM feeding so that I could put Oliver to bed but Brian brought me back up for his 11 PM feeding. I then went home until Sunday morning.
Sunday - This was when things really started moving towards discharge for Henry. I had already planned to spend as much time at the hospital with him as possible so that we could continue to nurse. We got up there at 8 AM and met with the doctor shortly after. Henry was doing so well that they decided to discontinue the oxygen and the phototherapy. So, his cannula was taken out. It doesn't seem like much but it was the start of our countdown to a wireless baby and we were so excited. After the 8 AM feeding, I had breakfast with Ann, Brian, and Oliver and then went back up to Henry for his 11 AM feeding. I stayed there until he ate again at 2 and then went to Dauphin and Kelly's house to take a quick nap before the 5 PM feeding. At the 5 PM feeding they took his IV out. One more wire gone!
I talked to the doctor and expressed my concern that Henry wasn't nursing well enough because he was still getting such big feedings via his feeding tube. Henry had yet to show any signs of hunger when it was time for him to eat. The doctor agreed that we should rewrite the orders so from then on if Henry nursed really well (as determined by myself and the nurse), then he wouldn't get any breast milk via his tube. If he didn't nurse at all, he would get a full feeding (40 mLs at this point). If he nursed but didn't do a great job he would get 30 mLs.
I skipped the 8 PM feeding again but was back up at the hospital at 11 with Grandma - who finally felt comfortable enough to hold him (it's really difficult to hold a baby completely covered in wires):
I skipped the 2 AM and 5 AM feedings (a girl's got to sleep) but we were back at his bedside for the 8 AM feeding on Monday.
Monday - I still can't get over how quickly things moved on Monday. His day nurse introduced herself and said: "Let's get this kiddo out of here." She got out the paperwork and set about ticking off all of the things that needed to get done. The first order of business was getting his feeding tube out. But since I had said I didn't want him to use bottles we first had to figure out if it would be possible for me to stay with him overnight (even though we were getting things rolling, the plan was always to discharge him on Tuesday). I told her I'd sleep in a chair by his bed if it meant we could take him home. She said they didn't allow that but that they would try to get me a spot to room in with him.
Henry also had to pass a car seat test in order to be discharged. Every baby in the NICU born before 37 weeks has to take and pass a car seat test. The test is just having the baby sit in his or her car seat for an hour and a half with the monitors on to be sure that they can continue to regulate their breathing, etc., in that sitting up position. He took it Monday afternoon and passed no problem. After his test, they cleared out the rooming in room for me and Henry and I moved in.
So, at 5:00 PM, six days after he was born, I found myself in a room with Henry by myself for the first time in his life. It was such an amazing feeling. The rooming in room was oddly decorated and smelled like burnt popcorn but it had a great view of downtown Austin. The thing about the room, however, was that once I was in it, I was in it. It was a badge access only room so I was basically locked in there with Henry. I could call out but I couldn't come and go from the room. I had Liz bring me dinner that evening and she spent an hour or so hanging out before Brian came with my clothes and a few other supplies. It was the first time the three of us - Henry, Brian, and I - had ever been alone and it was really nice. Brian only stayed for a bit (Oliver was really upset when he came home from school on Monday and learned that I was back at the hospital so we wanted Brian to be at home for him in the morning) and then it was just Henry and me for the rest of the night.
Tuesday - It was a restless night. I don't think Henry was used to the dark and the quiet so he was up a lot. But morning came eventually and with it, the promise of discharge. The nurse came to get Henry to run some labs around four in the morning. Later the doctor came and checked him out and declared him good to go. His bilirubin numbers were still high and he was still losing weight, though, so she only discharged us after I made an appointment with our pediatrician for the next day. Brian came up to the hospital around noon and then it was finally time to go home.
I'd like to say that I am still pretty ashamed of the fact that I spent a majority of my time in the NICU crying at Henry's bedside. I can't believe I stood there and bawled over my 37 weeker with a little fluid on his lungs when right next door to him was a 26-weeker who was delivered early due to severe IUGR and was less than a pound at birth. I talked to his mom once at the handwash station. She asked how my baby was doing and I said he was fine and probably going home soon. She said they were there at least until May. I can't believe how sorry I felt for myself that I had to wait four hours to hold Henry when I listened to this mother finally get to hold her son over a week after he was born. I took me about four days in the NICU to realize how absolutely lucky we were - lucky that Henry was going home soon, lucky that we managed to avoid delivering at 26 and 34 weeks. I can't believe the strength of this mother watching her baby of less than a pound slowly grow over months and months. I'm not sure how I would have handled that situation had it been us.
Finally, to end this post I've been writing for five weeks now, I'd like to say how grateful I am to the doctors and nurses in the NICU at Seton. They have an amazing staff and I felt that Henry and our entire family were very well cared for there.
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