NICU day 92 and 3 months old

I had really hoped we’d be out of the NICU by the time his three-month birthday came. But here we are. Actually, we had a really interesting conversation with Dr. L today at rounds. He asked us if we were tired of being here (duh) and said while they don’t like to do this, if we were interested, we could learn how to insert a feeding tube and we could go home on the NG tube while we continued to work on feeding.

I was shocked. He was basically putting the decision in our hands when to go home. I feel really conflicted. I want him home so bad. But I want him home healthy. And bringing him home on a feeding tube would mean multiple follow-ups with specialists, possible g-tube surgery, and the intimidating chore of changing his tube ourselves (which comes with the risk of accidentally inserting it into his lungs instead of his stomach – yikes.) It would be one thing if we were facing a long-term feeding issue. But all the doctors and nurses say this is textbook for an early preemie and that he’ll grow out of it. He just needs time. I just wish I knew how much time we were looking at. Another week, two weeks? Let’s wait it out and bring him home wireless. Another month, two months? Let’s just get him home already and stop wasting time in the hospital. So after talking it over with D and the rest of the medical team, I think we have a plan: give him until 42 weeks gestation (he’ll be 40 weeks on Monday) to lose the tube. His team thinks he’ll probably figure it out before then anyway, but if not, we’ll bring him home with a feeding tube at 42 weeks. If nothing else, it’s nice to have a hard stop.

Feeds went okay today. He’s taken more feeds by gavage than usual (three today, compared to his usual one a day), but the feeds he has done have been nearly full volume. It seems whether he takes a half feed every time or a full feed every other time, he’s still stuck at around 50-60 percent of his volume orally right now.

Anyway, with that daily update done, here’s what’s going on at three months…

Adjusted age: 39 weeks 3 days

Stats: 7 lbs 10 oz and 18.9 inches.

Milestones: As of August 1st we are off oxygen! Starting to do tummy time a few times per day.

Sleeping: Still sleeps pretty well, but I think that has more to do with him spending all his energy trying to eat. Though I still have hope we got a good sleeper this time since Theo was horrible!

Eating: The bane of my existence and obsession of every waking moment? In other words, we’re working on it. 65 ml of breastmilk plus 24 kcal of Neosure to fortify my milk, every three hours. Combination of breastfeeding and bottle feeding pumped milk (about 50/50 currently).

Personality: Is it too soon to say he is an affectionate baby? Theo was always so busy and not much of a snuggler. Even when he was an infant he was constantly moving and trying to see everything. E seems much more content to snuggle up against me. Part of that could be his prematurity. We’ll see…

Likes: Snuggling, being held. When he cries he calms down instantly when you pick him up.

Dislikes: Gas, reflux, having his temperature taken and his NG tube. Tries to pull it out often and hates having it put back in.

Mama: Still hating pumping. Still going into the office twice a week. It’s been hard to plan for things, knowing I’ll be out soon, but not knowing exactly when that will be. Starting to drop a bit below my pre-pregnancy weight, which is nice. I lost quite a bit of weight while breastfeeding T, but then gained it back, and then some, after I weaned. I’ll have to be more aware of that this time around. I’ve started losing my hair lately — I had completely forgotten about that fun postpartum side effect. When you’re pregnant you often stop losing hair (which is why pregnant women usually have great hair), but then a couple months postpartum you lose all that hair you should have been gradually losing during pregnancy. The human body is weird. Yesterday during barre I kept having that sensation that a hair was tickling my arms and I must have pulled about 10 strands of hairs off myself throughout an hour long class. At this rate I’m expecting to be completely bald in a few weeks.


NICU day 76

Today was a good day. As I’ve mentioned before, we’ve done two trials off oxygen before, and both times he made it about 12 hours before he got tired and needed it back. I’m happy to report we passed the 12-hour mark. And then the 24-hour mark. And then they removed his tank altogether from his room because it was clear he was rocking it on his own. Yeah!

Feeds were kind of hit and miss today. I nursed him at every feed except the 2:30 a.m. feed, during which I slept and the nurse gave him a bottle. He’s averaging about 60 percent of his feeds by mouth currently. One was as high as 84 percent and one was as low as 24 percent. So we’ve still got some work to do to get to the required 80 percent over 48 hours. He seems to prefer breast over bottle, which as the nurse pointed out, is a nice problem to have. He will take both, though, which has been the goal all along.

We’ve been talking to Theo a lot about E coming home, now that we’re getting closer. I know there will be an adjustment period while he learns how to share us (or maybe we’ve already begun that since D and I have been splitting our time?), but so far he is really excited. His daycare teachers say he’s been talking a lot about “his” baby too. He’s been asking for a few days to go see baby Emmett so I picked him up after school today and brought him back to the hospital. I nursed E while T sat and played a game on the iPad. Aside from the fact we were in a hospital room, it felt really normal, and I got a glimpse of what it might be like on a random afternoon at home with my boys.

This evening they moved us to the pediatric wing, which we have been told is a springboard for going home. The room is nicer and bigger, and is meant for rooming in (we get an actual bed instead of a daybed/cot), as they like parents doing more and nurses less as we get closer to discharge.

He lost half an ounce at his weigh-in tonight, which is a bummer, but not surprising. Over the past two days he’s gone from having most of his food delivered straight to his belly to having to work for every meal. Hoping he keeps getting stronger and more efficient at eating, so we can finally go HOME. Tomorrow we’ll have been here 11 weeks.

Theo helping the nurse move little brother down the hall

NICU day 75

Today Emmett is 37 weeks adjusted, which means he’s officially a full-term baby now. He did pretty well with his bottles last night and today, and this evening he nursed a full feed. He’s averaging about 60 percent of his daily volume orally, and we need to get to 80 percent before the feeding tube comes out and we start the clock for his release. I was able to clarify the other criteria – five days without a major event – and confirmed it started at last event … which was five days ago (!!!), so we are good to go on that front, as long as he continues to behave.

Today was jam packed at work trying to wrap up as much as I can and organizing all of my projects so I can hand them off. It’s hard because I feel like I’m still catching up after being gone those six weeks after E was born, so I’m feeling a little bit panicked about getting everything squared away for a second leave!

I also gave notice at daycare that we will be pulling T while I’m home on leave. We had debated whether to keep him in or not, and I was initially leaning toward keeping him in at least part time. But daycares are germ factories and we will be playing things a little cautious for a while, so we’ll just keep him home. I’m anticipating extreme exhaustion in my future, staying home with a toddler and an infant. Going back to work may very well feel like a vacation!

They removed E’s nasal cannula today around 11:30 a.m. We’ve done this twice before and both times he’s made it about 12 hours before he gets tired of breathing and needs support again. It’s almost 11:30 p.m. now and he’s still doing well. His weight was good too (he’s up to 6 lbs 8.5 oz), which is a good indicator he isn’t having to work too hard. I like seeing more of his face, and with any luck the feeding tube will be next to go!

NICU day 64

This morning I arrived at the hospital to find Emmett completely off oxygen! D and I had gone to a concert last night (our first night out together since E was born) and apparently the nurse had taken him off oxygen shortly after I left the hospital yesterday evening. He did great overnight and was doing fantastic when I got there, so I had high hopes this would finally work (even though we had taken him off oxygen once before, only to have to put him back about 12 hours later). Unfortunately, a few hours later (and after I had already posted to Facebook bragging he was off oxygen support), it was clear he was getting tired and desatting more than normal again, so they put him back on. He’s still only at 1/64 of a liter, which is virtually nothing, but apparently that “nothing” makes all the difference to him. My brain knows he’s making big strides and it’s only a matter of time before he’s off oxygen for good. But my heart hurts. I really got my hopes up this time.

He otherwise had a good day. That 1/64 of a liter is really so minimal, yet just what he needs right now, and he had a very boring afternoon with much fewer desats than average. D went back to the hospital after dinner tonight and said he’s been doing well this evening too. He gained an impressive 118 grams tonight, bringing him to 5 lbs 11 oz.

Cannula free, take two.

Cannula free, take two.

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NICU day 51

Last night I went to the Dixie Chicks concert with a couple friends. It was a much-needed girls’ night out, and I was too tired to write by the time I got home. But now it’s 4 am and I’m up for my nightly pumping session so figured I’d get a quick update out while I’m up. Because yesterday was actually a pretty big day… Emmett is off oxygen!

They decided to remove his cannula yesterday morning, despite the fact he’s still having desats from the reflux. Even when they periodically turned up his oxygen through the desats it didn’t seem to make any difference, so they thought they’d go ahead and give him a try. Worse case scenario they put it back. As you can see in the picture below, they left the pads taped to his cheeks in case they needed to put it back. But so far he’s doing great. No increase in desats — maybe possibly even a teeny improvement, if anything. Maybe he’s just more comfortable without something on his face and up his nose, and it’s possible he’s getting less air in his belly now. They warned us that if he were going to need it back, they would either know right away due to an increase in events, or they would know after a day or so on it because he would start showing signs of fatigue from doing too much on his own. Fingers crossed he continued to do well through the night when I call in the morning for an update!