NICU day 59

This morning the doctor prescribed Emmett a prednisone nasal drop to help with the inflammation. He’ll take it twice a day for 7 days. They also put him on a fast-acting diuretic for two days, twice a day to help with lung inflammation and edema. If we don’t see improvement, may look into a longer-term diuretic.

After a rough night last night, I was both looking forward to getting away from the hospital, and dreading leaving Emmett at the same time. The fact that Theo has swimming lessons on Saturday was a good excuse to get away. Sometimes I need that extra nudge to peel myself away. While I was gone, his breathing got so bad again that the nurse decided to suction him even though we’ve been trying not to as much because of the inflammation. It’s a good thing she did, because she got what she described as a “gremlin” from his nose that had formed a complete plug. No wonder he couldn’t breathe. She said she was so impressed with the size that she called the doctor in to take a look!

Unfortunately, both his cannula and the feeding tube may be exacerbating his congestion. The feeding tube is giving all that refluxed milk something to cling to, and the cannula is blowing dry air in, which is basically the perfect recipe for monster boogers that are so far back in his nasal/throat area that they’re really difficult to suction out. We have some humidity on the cannula, but it’s still drier than if he were just breathing room air. The feeding tube also keeps his esophageal sphincter slightly open, which can exacerbate the reflux. Unfortunately, life is basically one giant catch-22 right now. We can’t remove the cannula until he’s having fewer events, and we can’t remove the feeding tube until he gets the hang of breast/bottle feeding. But the reflux and difficulty breathing are inhibiting feeding and causing events. And around we go.

We may try another round of systemic prednisolone, since he responded so well last time. If we do, they may try removing his cannula toward the end of the course while it’s still in his system. Meanwhile all we can do is try to keep breastfeeding him whenever he’s alert and hungry, but he’s working so hard to breathe right now that the nurse described it as like you or I trying to do aerobics and eat at the same time. Our attempt at breastfeedng today was a complete bust, so after about 20 minutes I just pulled him up into a kangaroo hold. Despite my disappointment over continued breastfeeding failures, he ended up having a really good rest of the afternoon. He was calmer than I’d seen him in a couple days while on my chest, and hardly had any desats. Those steroid drops really made a huge difference with his congestion, and while he’s still bothered by the reflux, at least he’s breathing clearly now. His weight was up 24 grams tonight, bringing him to 5 lbs 1 oz.

IMG_1965

NICU day 49

I didn’t get to see much of Emmett today since I went into the office and didn’t get back to the hospital until around 9 p.m., after tucking T into bed. But D was with him most of the┬áday and said he did really well. This evening I overheard one of the doctors telling a nurse that E was “a great steroid story.” He really is showing a great improvement after being on the prednisolone. I’m still waiting to see if he rebounds at all, but he’s really doing great. The bad news is he lost 12 grams today, but we haven’t had a loss in a while so I’m okay with that. He’s still 4 lbs!

This evening I picked him up on my own for the first time, which was so nice. He was fussing and I just walked over and scooped him up and rocked him for a few minutes, then put him back. It was a very ordinary baby thing to do, and it was wonderful. Getting out of the isolette was a game changer. Like I said yesterday, he really feels more like ours now.

That’s about all there is to say about today. Blissfully boring.

IMG_1820

NICU day 48

So, this happened today:

IMG_1811

Emmett got to ditch the isolette and is now in an open bassinet. At first I thought it seemed really soon. And then I realized he will be seven weeks old tomorrow. Seven weeks in the NICU, wow. If someone had told me months ago their baby had spent seven weeks in the NICU, I would have thought that sounded like the most awful thing in the world, but it’s flown by. Don’t get me wrong – this is by far the hardest thing we’ve ever had to go through, and we’re only about halfway there. But we’re also doing okay. As I’ve said before, as long as he’s okay, I’m okay. And huge milestones like this really do wonders for keeping a positive outlook.

Speaking of positives, E gained 48 grams today and is now 4 lbs 1 oz. He’s down to 1 liter of flow on his oxygen and the nurse told me tonight that she thinks he could be off oxygen altogether within a few days. I’ll believe that when I see it, considering they’ve prepared us for the possibility that he could come home on oxygen due to the CLD. He also still has a few more days on the prednisolone and we’ve been told that babies can sometimes rebound a bit once they’re off it, so I’m trying not to get my hopes up until I see how he handles that. But the fact that we’re even talking about it blows my mind.

Now that he’s in the bassinet he’s wearing clothes, which is pretty exciting. Last night I washed a bunch of preemie clothes we’ve gotten as gifts and he’s gotten to wear two of his outfits today (he peed on one and needed a wardrobe change!). We also have free access to him and can pick him up if he cries now. He still has a lot of wires and tubes to navigate so I’m not very comfortable with that yet, but I’m sure that will come with time. It’s funny, he suddenly feels much more like he belongs to us instead of the hospital.

IMG_1792

IMG_1791

IMG_1812

Save

NICU day 41

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.

IMG_1619

NICU day 40

Emmett had a pretty rough night last night. D was with him and said his alarms were going off all night. This morning we met with the doctor who told us Emmett has chronic lung disease, or bronchopulmonary dysplasia. He turned his oxygen flow back up to 4 liters and ordered a chest x-ray to be sure, which confirmed the diagnosis. It was upsetting to hear the word chronic. Contrary to what we’ve been told all along, this may not be something he simply grows out of. The doctor recommended putting him on a 10-day dose of prednisolone and we agreed. The other options were to put him on a diuretic to drain the fluid from his lungs, or to turn his oxygen flow back up even higher — but that would reverse a lot of the progress we’ve made thus far on weaning his respiratory support and could put off breastfeeding even longer. So we’re hoping the prednisolone helps, but it’s very possible this may be an ongoing issue for him and the doctor said in some cases babies with CLD even go home on oxygen. I’m feeling pretty defeated.

On a positive note, his red blood cell count was good today so he got to come off the Epo. We had a good kangaroo session today with very few events and he seems to be doing well this evening. He’s back to 21% oxygen and satting in the high 90s for the most part, with the occasional brief desat. He lost 10 grams tonight, which isn’t super surprising after several days of high gains. He also missed at least part of his 5:30 p.m. feeding because he pulled his feeding tube out yet again when I went home for dinner, and the nurse didn’t realize it until she went to check on him and the tube was out and there was milk all over him and his bed. Something tells me this kid is going to be a trouble maker.

IMG_1593