Today I had to go into the office, and D wasn’t able to be at the hospital either, so E spent most of the day alone. I got here around 7 this evening and checked in with the nurse to get a report on his day. One big brady/desat (reset that clock by 5 days again), and about 50 percent of his feeds by bottle (not too shabby). Unfortunately when I nursed him tonight he only took in 6 ml, which is just 10 percent. It’s frustrating, to say the least. On the plus side, he’s up to 6 lbs 12 oz.
He was pretty grunty this evening. He’s kind of a grunty baby in general, thanks to the reflux, but tonight he seemed especially uncomfortable. When I picked him up, he would calm down, but as soon as I’d set him down, he’d start up again. He really likes to be held. I can’t wait until he’s wireless and I can walk around or go find a comfortable spot to sit and cuddle him. Because he’s tethered to all the monitors, I can’t take him very far, which means I usually just stand next to his bassinet to hold him.
That’s about it for today. Onto day 80…
Anyone who’s ever been pregnant (to term) will tell you that the ninth month of pregnancy lasts approximately 68475840383758202 years. I’m beginning to think the same is true for that final stretch of NICU life. Since the day Emmett was born, the doctors and nurses have all told us to plan to be here until around his original due date. Sometimes babies go home sooner, sometimes later, but the due date is a pretty average target for a release date when you have a preemie, particularly a really early one. And I think I was okay with that until Sunday when we were teased with the possibility of an early release. Since then E has slipped back into his old ways. Frequent but minor desats, occasional bradys, lack of progress on the eating front. On the bright side, he’s off oxygen still. But it’s looking like these feeding issues will be the final hurdle.
I’m just exhausted and I’ve hit my wall. I know we’re almost done, and he really is doing well. But for some reason I’m having a harder time now than I ever have. I just want him healthy and home so we can begin normal life.
Today Emmett took a step backward from the great progress he’s been having. He had one brady overnight, which automatically reset our jailbreak clock back to five days. He also had a lot more desats today. They were all quick and not terribly low, and it’s not enough to put him back on oxygen just yet, but they also wouldn’t send us home if he were still doing that. He was also just really sleepy today and not very interested in eating. The nurse said he was probably just really tired from all the progress we’ve made in a short amount of time, and that this rebound effect is very typical of a preemie after making such big strides forward.
So it looks like we’re not as close to going home as we originally thought. He’s still doing really well, considering all he’s been through. But it was a bummer to realize he’s not going home in the next few days like we thought he may be. That said, this rebound could be short-lived and we could see him start trending upwards again very soon. It’s kind of a wait and see game at this point. He’s up to 6 lbs 10 oz now and doesn’t fit in most of his preemie clothes anymore.
Today was mostly good, but ended pretty rough. E got his two-month vaccines this morning and had been having a few more desats all day, but they were all brief and nothing too low — mostly mid-80s and only for a few seconds. Then late this evening, he suddenly started having a ton, along with a few bradys. At one point his oxygen dropped down to 32 percent, which was really scary for me. It’s never gone that low before. His temperature was also 38.2C (100.8F). The nurse wasn’t too worried and said sometimes babies just don’t react well to vaccines and that he’d be better in a couple days. She ordered him some Tylenol for the fever, which should also help with his desatting (he was holding his breath because he’s uncomfortable, which was causing his oxygen to drop). She turned his oxygen up to 1 liter (it had been at 1/64 all day) to give him a boost, and that seemed to help.
He’s now sleeping in my arms and satting at 100 percent, which is higher than it should be, but they don’t want to turn it back down until he proves he’s doing better. It’s after midnight and I’m exhausted, but I’m afraid to put him back down. It’s going to be a long night.
Today was a good day. Last night was another fussy night because of the reflux, but we’re still seeing way fewer events.
The best part of the day was that we had a major breakthrough in breastfeeding. Part of that is definitely thanks to the tongue tie clip, but a big part is thanks to the nurse who suggested we try nursing with a nipple shield this morning. Without going into too much detail (because my coworkers and father-in-law read this blog), the nipple shield helps create a shape that makes it easier for a baby with a tiny mouth and under-developed muscles to latch onto (think more bottle nipple than human nipple), and also helps reach the roof of their mouth, which stimulates their sucking reflex. The difference was like night and day, and he actually nursed for about 15 minutes straight instead of the on-off-repeat cycle we’ve been on.
Unfortunately, toward the end of his feed, he had a pretty big brady. The nurse said that’s a common issue for preemies. The whole suck-swallow-breathe thing can be tricky for preemies to coordinate and he must have forgotten to breathe temporarily, which made his heart rate drop. The nurse warned us we could start seeing those pretty frequently now with feedings, which is kind of disheartening. Just when we overcome one hurdle, a new one presents itself.
The rest of the day went really well. I came home around noon and D headed back for the afternoon and will stay there tonight. I’m happy to report we have officially reached 6 lbs!
I went into the office today so I didn’t get to see Emmett until after dinner tonight. D said he had a pretty good day. A few desats around feeding, but otherwise pretty uneventful. He said he had kind of a fussy night, though, and that he didn’t get much sleep. I’m staying the night tonight, so we’ll see how he does. Right now he’s napping peacefully on my chest. He had a quick brady shortly after I got here, but has been pretty steady on his oxygen saturation. I did notice his tank is set at 1/32 instead of 1/64. The nurse said he had been desatting a little earlier, so they gave him a little bump.
Breastfeeding went pretty well tonight — comparatively, anyway. He’s still not really getting it, but he latched better tonight than he has been, and I think he kind of surprised himself when he actually got some milk! I can see the wheels turning and hope it clicks for him soon.
Weight was up 52 grams, bringing him to 5 lbs 13 oz.
Today was another pretty good day. Emmett’s desats were brief and infrequent, and he only had one brady that I saw, which was also quick. He still gets pretty uncomfortable with the reflux, but he doesn’t seem to be desatting as much as a result, so maybe it’s either improving or he’s learning to deal with it. They increased his feeds to 41 ML and he put on 64 grams tonight, bringing him to 4 lbs 11 oz.
I had a good conversation with E’s nurse, physical therapist and the lactation consultant about breastfeeding today. As I’ve mentioned before, being able to nurse E is so important to me, and I’m nervous because preemies often struggle to breastfeed. Many preemie moms end up having to pump exclusively, or switch to formula, despite their best efforts to nurse. To compound my fears, E isn’t really cueing the way he should for us to start nursing. He’s been scoring 2s and 3s on nursing readiness, when he needs to be getting 1s and 2s. But today his team thought we should give it a try tomorrow anyway. They said sometimes babies don’t exhibit obvious hunger cues on their own, but when faced with an actual boob, they figure it out. So we’ll give it a shot tomorrow. I’m keeping my expectations low, but am glad we’ll at least try. The process will take a nurse, a lactation consultant and a physical therapist (that sounds like the start of a bad joke), so I’m sure there will be plenty of awkwardness. It’s a good thing after birthing two babies I’ve pretty much lost my modesty and dignity, anyway!
It’s been kind of a rough day. Even just typing out “day 50” sends a new wave of exhaustion through my body. I’m so tired. Emmett seems to have very suddenly developed a case of severe reflux and it’s been causing us a lot of issues. It started yesterday evening with him spitting up a couple times (out of character for him), escalated to a fairly traumatic spit up/choking/brady/desat episode late last night, and now all day today he’s been having desat events and struggling to breathe at times because he’s refluxing up into his mouth and nose. They had recently increased his feeds (he’s up to 36 ML per feed now) and think that could be what’s causing the reflux, but he’s been on full feeds for several weeks now, so the increase shouldn’t make that big of a difference — they’re just pacing his growth. Either way they don’t want to back off on the feeds since growing is still our primary focus. They’ve talked about possibly lowering his caffeine since he seems to be growing out of the apnea, and caffeine can exacerbate reflux. In the meantime, they’ve raised the head of his bed so he’s at a bit of an incline, and for now we wait and see if he gets better or worse. I held him upright this evening during one of his feeds and that seemed to help some.
To add insult to injury, he had another eye exam this afternoon. The same horrible ROP check he had two weeks ago. Unfortunately, this time he is presenting with stage 1 ROP. As I mentioned before, it’s rated from 1-5, with 5 being the worst. The good news is, the ophthalmologist said 90% of babies grow out of stage 1. About 75% will progress to stage 2 first, but will still be among that 90% and grow out of it. IF it gets to stage 3, we start discussing treatment options, but I’m hoping it doesn’t come to that.
On a positive note, he gained 62 grams tonight, bringing him to 4 lbs 3 oz.
Emmett reached an exciting milestone today: he is now officially double his birthweight, at 3 lbs 12 oz. He had another pretty good day today. Still a few more events than I would like, but nothing like he was a few days ago. The team is happy enough that they want to turn him down to 2 liters of oxygen flow tomorrow. It makes me nervous, but they think he can handle it.
There was also some talk today about moving him to a crib soon, which is huge. They have turned down the temperature in his incubator and have been swaddling him in a blanket. This was mostly to keep him from pulling out his feeding tube, but it’s good to see he is getting better at regulating his temperature.
Today was my first day working from the hospital and it went well. It made the day go by faster and I was actually pretty productive, so I’m feeling good about my decision to go back and save my leave for when E comes home. I still have every reason to believe that will be sometime mid-August, but it’s crazy to see how much progress E is making and how the team is plowing ahead with next steps. It’s weird – I’m actually kind of scared of the progress. For one, I’m afraid of getting too comfortable again. I think what made the last week’s setback so hard was the fact that he had been doing so well the week before. But two, I’m honestly afraid to take him home. The NICU can keep even a very sick baby alive. Can I? I remember when T was a newborn I would just stare at him while he slept, terrified he would stop breathing. And he was healthy. With E’s prematurity and the CLD, I’m going to be a basket case. I may need more weaning from the monitors than E does. I kind of want to get one of those Owlet monitors, but D thinks I’ll drive myself even more crazy.
I’m home tonight and did some cleaning and organizing of the nursery this evening. I unpacked T’s old newborn clothes and hung them in E’s closet. Seeing those little clothes (which look huge, compared to Emmett’s size) brought back a ton of memories. As scared as I am to bring him home, it’s starting to feel more real and I’m also getting excited.
Tomorrow Emmett is six weeks old. And on Thursday I return to work after taking my six weeks of short-term disability. The decision to return now was difficult, but I wanted to save the rest of my leave for when E comes home and I can have a somewhat normal maternity leave. I have mixed feelings about going back. On the one hand, it will be nice to feel like I’m using my brain for something other than medical terminology. On the other hand, it will be surreal to go back, knowing E is still in the hospital. Thankfully my employer has been very accommodating of our situation and is allowing me to work remotely from the hospital part of the time. Even if I can’t do anything for Emmett here, just being here makes me feel better, and studies have shown that NICU babies thrive more simply by having their parents present. D’s work has been very flexible as well, so on the days I go into the office, he will work from the hospital.
Today was a relatively uneventful day. E is still having a fair number of episodes, but fewer than he was just a few days ago. It will take a few more days for the prednisolone to have any effect on his lungs, if it will help at all. I’m still processing the CLD diagnosis. This could be something he overcomes with little to no lingering issues (children’s lungs can actually regenerate themselves), or this may cause him issues for the rest of his life. We just don’t know, and we won’t know for quite some time. For a planner like me, the unknown is one of the hardest parts about this whole situation.
Our little troublemaker is still pulling out his feeding tube every opportunity he gets. The nurses keep taping it down in different ways, hoping to secure it from his grabby fingers, but their efforts have been largely unsuccessful and have mostly just resulted in layers upon layers of tape on his face. His nurse this afternoon decided to take all the tape off and start over. So far so good, and bonus – I got a chance to snap a photo of his face without his cannula or feeding tube and only a little bit of tape. I so rarely get to see his naked face! He’s got his big brother’s “stink eye” look down pat. And our little chunk even has a double chin now. He’s up to 3 lbs 9 oz.