I promised an update on how Lily was doing in the NICU, and now it’s been several weeks and we’ve been home for two. But, I’m pretty sure having a newborn is a good excuse for not updating, so I don’t feel too bad. 🙂 But I’ll go back and cover her NICU stay, just for posterity.
As I (think?) I said in the birth story, they were able to put her on my belly for a couple of minutes once she was born, and again for a couple minutes once she was checked out and swaddled. But after that she had to go to the NICU. Christopher went with her, and went back several times, but I only really saw her for those few minutes initially, and for very brief visits later that day. I felt really good for having just given birth, but I was just too weak to be out of bed for extended periods of time, and she was in her isolette so we couldn’t hold her anyway. (On a related note, I was telling Christopher yesterday that, unlike many people, I don’t consider the day she was born the best day of my life. It was too rushed and crazy, and then I barely saw her. It’s not that it was a bad day, just that there have been lots of better days since.) (Also, since I don’t know where else to note this, they had me start pumping every 2-3 hours around the clock right from the get go. My milk came in within a couple of days, and she’s been on fortified (for extra calories since she’s small) breastmilk almost exclusively her whole life.)
That first day/night she was on CPAP (to help her breathe), but it was more of a precaution. She had basically no breathing issues and was off of it by the following morning (not sure when they took it off). They then had her on a cannula (tube in her nose to give her air), but it wasn’t even on more oxygen, just the same air we breathe all the time, and they took it out that next day (so she wasn’t on any sort of breathing assistance for more than maybe 24-36 hours).
The room she started out in was the NICU at the actual hospital where I delivered. It was pretty much what I picture when I think of a NICU; one big room with lots of isolettes scattered around. I had to sign a form saying I wouldn’t talk about anything we saw there, since we could see all the babies. It was interesting though. At some point that night, we got a phone call to our room saying they were moving her to the Children’s Hospital NICU (it’s connected) because the one she was in was getting too full. I’m really glad I was half asleep when I answered that, so it took me a minute to figure out who was calling, or else I’d have been really freaked out. You really don’t want a call from the NICU in the middle of the night. But it was actually a good thing. For one thing, she got a private room. For another, they wouldn’t have moved her if she wasn’t strong enough for it, so it was a positive sign of how strong she was. The only drawback is that it was (literally) about half a mile away, though all indoors. I was nowhere near strong enough to make that walk, so Christopher got a workout pushing me in a wheelchair back and forth.
But we were able to hold her! We both did kangaroo care quite a bit, which was lovely. It was complicated though, to pick her up. She was on the cannula for a while, 3 different wires monitoring heart rate and respiratory rate, pulse ox monitor on her foot, wire with temp monitor under her arm, and she had IV’s (for fluids) in both arms (though only one was hooked up; I think the other was just for backup). Later they added a tube down her nose into her stomach to feed her, since she was too sleepy to nurse or take a bottle. Though I did get to try to nurse right away, which was nice.
So I had her on Monday, she moved to the new room that night, and stayed there until Wednesday. I was being discharged on Wednesday, and we planned to check out, then spend the day in her room, then go home for the night. But, happily, a room opened up in another section, and she was able to be moved to a much bigger/nicer room, which had a couch where one of us could sleep. It also had a recliner, TV, private bathroom with shower, etc. So I just went home briefly to get some stuff and to be able to have a car, and came back to stay with her. I was thinking initially that having to go back and forth wouldn’t be too bad, but after seeing what a pain it was the times I did leave, I am SO glad we got that room. It was a lifesaver. Not to mention just having a comfy chair and a TV made the stay much more enjoyable than it would have been.
Unfortunately she almost immediately (sometime Wednesday I believe) started showing some jaundice, so she had to go under the bili lights. That’s very common in preemies, and fairly common in even term newborns, but it sucks. She had to stay in her isolette the majority of the time, and could only come out to be held 30 minutes of every 3 hours. Thankfully she didn’t really mind too much (I think it’s easier with preemies, since they sleep so much, than with a term baby who would be more awake and mad about not being swaddled/held), but it sucked not getting to hold her much. Also, she was on them at night too, which made sleeping in her room a bit tough. But the good news was that she was off them by Friday (so only 2 days), and never had to do them again. They had said that it was very common to have to do them more than once, so I was really grateful that that didn’t happen.
At this point the exact timeline of things is harder to remember. Christopher stayed with her that Friday and Saturday night, so that I could sleep a bit more. I still had to get up to pump, but not having the zillion beeping monitors and alarms meant I got a lot more sleep at home than at the hospital. He saved his paternity leave for when she came home, so he only did that on the weekend since he was working. And, honestly, I didn’t really like leaving her.
At some point her IV wasn’t working right, so they switched to the other arm (remember she had lines started in both but only one was connected) and took out the first one. I was a little worried the second one would wind up messing up, and they’d have to put a new one in (no fun), but that never happened. And it was wonderful having that hand free. Eventually (maybe 2 more days?) they were able to take out the other, which was even better. The rest of her wires and monitors stayed on till the end, with the exception of the feeding tube in her nose and the temp monitor.
The three things that a preemie has to be able to do to go home are breathe on their own, regulate their temperature on their own, and eat on their own. Like I said, she had essentially no breathing issues, so that one was never a problem. The next thing was regulating her temperature, and the same day she got her IV out she took her first big step on that one. They changed her isolette setting from one that monitored her temperature and changed the air temp accordingly to one that just kept the isolette at a set (warm) temp all the time. Over the next couple of days they dropped the temp in the isolette a little at a time, until it was just room temperature (which was still pretty warm, around 74-76). Once it was clear that she could maintain her temp well enough (with warm enough clothes; she wore clothes for the first time when she was 9 days old!), they were able to switch her from an isolette to a normal crib. That was really nice. It was much easier to get her in and out, and it meant one less beeping monitor to worry about, and one less wire to keep track of. The wire for the temp monitor was also the shortest, so it meant we were able to sit more comfortably far away when holding her without worrying about yanking a wire off.
The last thing she had to be able to do was stay awake long enough to take her entire bottle for every feeding (or, I guess, theoretically she could have gotten good enough at nursing to go that route, but that wasn’t going to happen with her being such a sleepy preemie and lazy nurser). As long as she had the tube in her nose, they could just feed her whatever she didn’t eat on her own through the tube. But since we couldn’t do that at home, she had to be able to do it herself before she could leave. That took the longest. It was several days after she was moved into her real crib before they decided to chance taking out the tube. I was SO worried that she wouldn’t keep eating enough and they’d have to put it back. Not only would that just have been disappointing, since I was beyond ready to get her home, it would also have been very hard on her. The only time (to date) that I’ve seen her really scream/cry hysterically (yes, I cried too) was when they had to put the tube back in after one nurse took it out (she didn’t like that it was a long one instead of a short one, apparently. I was beyond furious), so I did NOT want her to have to go through it all over again. But thankfully she did just fine.
That was Monday, July 6th, when she was exactly 2 weeks old. I figured at that point that we’d have another couple of days before she got sent home, maybe Thursday-ish. So I was really, really surprised when, during rounds the next morning, the doctor announced that she was going home! The only thing left was for her to sit in her car seat for one hour and not have any breathing issues. Apparently with preemies having weak necks, there’s more of a risk that they’ll not hold their head up at a good enough angle to breath properly. Christopher had just put the car seat in his truck the night before, with the intention of getting it installed in my car soon, so I called him and let him know he needed to come to the hospital right away, and bring the car seat! I was worried about that test, since we were so close to getting to go home, but she did great. She didn’t even cry, which was my other fear. We couldn’t touch her at all while she was in the seat, so we wouldn’t have been able to comfort her. But she just slept right through it!
Then we had to watch a (really hilariously bad) video on infant CPR (taking a CPR class had been on our to-do list for before she arrived!), listen to a lot of instructions from the nurse on things like safe sleep, learn how to fortify her bottles with special formula to give her extra calories, etc. She also had to have a hearing screen. At first they said they might have waited too late to page the person who does that, and they might have left. They were saying if that were the case we wouldn’t be able to leave. I was fully prepared to refuse the screening and do it later (which they might have kicked up a fuss about, but you can refuse anything you want, generally speaking, and I really would have done it asap), but the person had apparently not quite left yet and she came up and took care of it for us. (Her hearing is perfect, in case you’re wondering.) After that it was just a matter of waiting for the person to bring a wheelchair to take us out (me riding, holding her), getting her in her seat, and heading home!
It worked out really well too, in that my dad, stepmom, and sister had come up from Memphis that day. My stepmom was able to drive Christopher’s truck home (because I was so not driving her home alone, but we didn’t want to leave his truck at the hospital either), which was a huge help. And they ran to the store for us and got the things we didn’t really plan to need yet, like preemie diapers. And swaddle blankets. Her first swaddle at home was in a pillow case, because it’s all we had! We had swaddlers, but they’re all for normal size babies. Thankfully we now have blankets, two sleep sacks, and a swaddler small enough for her. 🙂
This is getting very long, so I won’t go into much post-NICU on this one, but I will say that things are going really well. She’s a super happy baby, and sleeps great. We still have to wake her up for most of her feedings. Hopefully as she gets closer to term and beyond that won’t change too much. Nursing is still not really happening, but we’re working on it, and still have plenty of time. I’m going to meet with a lactation consultant as soon as I can to work on that. Overall we’re just really, really happy. We could not possibly love her more, and she’s just perfect! Being a mommy to this little one is pretty much the coolest thing in the whole world.