NICU day 95

Note: I was just notified by my mom via text message that I did not post this last night. Oops! Lots of good news below, and this morning we just got the even better news that if the next 24 hours go as well as the previous, we can go home! 

Here’s the rest of what I wrote last night.

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It’s been more than 24 hours on the no feeding tube trial and we’re doing well. E ended the day around 85 percent of feed volume and managed to gain 44 grams tonight, so that’s a huge win. He’s now 7 lbs 13.5 oz. I haven’t nursed him since yesterday, as I was gone for several hours today and he was sleepy the times I was there, so he’s just been getting pumped milk from a bottle. I feel like a little bit of a failure that I can’t seem to give him those numbers when I’m nursing, but I’m still determined to keep working on this. I know preemie moms who have left the hospital on bottles and fought their way back to breastfeeding and went on to have a successful time nursing. So it can be done. The most important thing is that he is eating, and minus the feeding tube. If he keeps this up we could be home very soon.

NICU day 94

Well, we’re doing another trial off the feeding tube. We aren’t quite at 80 percent due to the nurse gavaging him twice overnight (though if you ask me, sometimes I think they just gavage him when he could possibly wake up and eat), but he’s had several full feeds in the last couple days and when he pulled his feeding tube out again today the doctor suggested we just not put it back and see what happens again. This time around, the doctor suggested that we just do one or two breastfeeding sessions per day and make sure he is really awake, and bottle feed the rest. She thinks the one or two breastfeeds per day will give him the practice he needs so he doesn’t lose the skill, while allowing him to conserve some of his energy since he doesn’t have to work as hard for a bottle. We can work on gradually increasing the number of nursing sessions per day at home, but as long as we can maintain volume, the doctor said she sees no reason we need to stay here any longer. The next 48 hours will be very telling; we’ll either go home or go back on the feeding tube.

I spent most of the day at the hospital today, and went home late afternoon, and then D and I went out to dinner and a movie (T is with grandparents for the night). Then I came back to the hospital for the night. When I got here, E was wide awake and happy and the nurse reported he had taken two full bottles while I was gone. He then nursed and got about half of his feed volume from me, which is better than average. Since we aren’t gavaging after nursing now, the hope is that he can self-regulate and wake up again if he gets hungry sooner, or possibly take a bigger feed next time. I really hope this works, though I’m trying to be realistic since we’ve been through this before.

NICU day 93

E had a good feeding day today. He hasn’t had to be straight gavaged since 3 p.m. yesterday and he took several full bottles today. I went into the office so I didn’t get to nurse him until 9 p.m. this evening, but he took about a half feed from me, which isn’t terrible. He definitely does better with the bottles. We ended our day at 72 percent of all feeds orally, which is great! Of course, since I’ll be here tonight and most of tomorrow, the breastfeeding will bring down our average. The analytical side of me hates to see those numbers plummet on a day where I nurse more than bottle feed, but the side of me that really wants breastfeeding to work wants to practice at every chance we get. Conflicting emotions, for sure.

Either way, it’s clear that E is starting to get stronger. He was very alert during his feeding tonight and I even put him back in his crib still awake. He very well may sleep through his midnight feeding, but it’s good to be making noticeable progress. Inching along…

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 91

Not a lot new to report today. Back when things were more critical, a boring day was a good day. Now we’d really like to see more change and more progress with feeding. We are making progress, but it’s S-L-O-W. And because I love me some data visualization, here’s what a week’s worth of 24-hour averages (calculated every three hours) looks like:

Capture

We’re trending up, but at a snail’s pace. I’m so done with all of this.

NICU day 90

Today was a lot of the same: encouragement by the gradual feeding improvements, overshadowed by the reality that it’s still not enough. We have hit 90 days. And with each passing day it’s more and more likely we will go past our due date. We very well may hit 100 days, and I had really hoped we wouldn’t hit triple digits.

We got a visit from the physical therapist today, who said we should be doing tummy time with E a few times per day. On the one hand, it’s fun to be able to do things normal parents do with their infants; on the other, it’s depressing to be hitting these milestones in a hospital room.

Emmett has been doing a lot of reflexive smiling lately, mostly in his sleep, which is adorable. Still probably won’t be doing much reactive smiling until he’s around 4 weeks old, adjusted. But it’s fun to get a sneak peek of what his smile will look like. He just gets cuter by the day.


NICU day 89

Today was a pretty good day on the feeding front. I went into the office so D was here with him and he got mostly bottles for the day, though we did have one good nursing session after his 9:00 cares tonight. He ended his day at 64 percent of his total feed volume orally, which is great, considering we’ve been averaging closer to 40 percent lately.

It’s a step in the right direction, but it’s a painfully slow process. He is 39 weeks gestational today, which means we are exactly one week away from my original due date. All along we’ve been told my due date is a pretty good estimate for when we can expect to be discharged, but it’s looking more and more like we may be here past that date, which is a tough pill to swallow. It’s possible he could rapidly improve and we could be out of here in a few days, but it’s unlikely at this point.

E turns three months on Thursday and is up to 7 lbs 7 oz now. Onto day 90…

NICU day 88

Well, yesterday’s on-demand feeding trial was basically one giant failed experiment. While E was definitely taking in larger feeds, he wasn’t getting enough volume to make up for mostly going the maximum four hours in between feedings. He was also starting to show signs of exhaustion, which is one problem with letting him get too hungry. So around 6:00 this morning, back on the feeding tube he went. It’s disappointing, but I’m glad we gave it a shot, since all along I had been wondering if he’d eat more if we actually let him get hungry. Now I know.

I will say, knowing we can gavage him after letting him try a bottle or nursing first helps take some of the pressure off our feeding sessions. It also lets me celebrate the above-average feed volumes instead of fretting that they’re not enough. It’s clear this kid is just going to take some time to get feeding down, which everyone tells me is so common for a baby born this early and with as much of a respiratory history as he’s had. I go back and forth between being okay with this — after all, he’s doing phenomenal for a baby born more than three months early (perspective!) — and feeling completely beat down, because at this rate we will be in this hospital until he goes off to college.

Feeding went a little better today. A friend came to visit while we were nursing this afternoon and I think our conversation kept him awake because he didn’t get as sleepy during the feed and managed to take in 44 ml! Of course, the next feed he was so zapped he took nothing and wouldn’t even wake up for me. We still have a long way to go on endurance, but we do seem to slowly be inching upward. He’s up to 7 lbs 6 oz now.

NICU day 87

We had a pretty sleepy night last night. The nurse ended up just gavaging Emmett at every feed except one, during which he nursed vigorously for about five minutes and then was out cold. He took in 12 ml, which isn’t a lot, but I thought was pretty good for just five minutes.

This morning, Dr. L came to visit and announced we have a new plan. Even though he’s nowhere close to the 80 percent feed volume we were aiming for in order to remove the NG tube, he decided to remove it now anyway and do a 48-hour trial of feeding on-demand. He thought maybe the strict three hours between feeds wasn’t giving him a chance to get hungry (for the record, I’ve been saying this all along!!), and the fact that he takes in near-full volumes some feeds and practically nothing others means he’s capable of taking a full feed but just might not be hungry sometimes. So the new plan is to nurse or bottle-feed whenever he actually acts hungry, regardless of how long it’s been since the last feed, but not to go any longer than four hours. This is basically what you’d do with a normal newborn anyway, and most newborns figure out how to eat what they need to grow, so we’re hoping he does the same. If after 48 hours he’s losing weight or not wetting enough diapers, they’ll put the feeding tube back, and we go back to our original plan of aiming for 80 percent orally and gavaging the rest.

We’ve had three of the on-demand feeds today and the jury’s still out on whether the new plan is working. So far he’s definitely eating more at each feeding, but he’s also going pretty close to the maximum four hours in between feeds — which means instead of eating 65 ml every three hours, he needs to be eating 85 ml every four hours in order to take in the same daily volume. So percentage-wise, we’re pretty much even with where we were before. At least so far. I feel like three feeds is too soon to tell and that once he realizes he dictates when he eats his patterns may change.

I must say, it feels nice to have a new plan since we weren’t making much progress the old way. At least it feels like we’re doing something. And if it doesn’t work, it was nice to have a naked-faced baby for a while.

NICU day 86

I was in the office most of the day today, so Emmett got mostly bottles, which should have pulled our daily average volume up, except today’s nurse subscribed to the “let him rest every other feed” school of thought, which dragged our average down. We’re sitting at 42 percent for the day (remember, we need to get to 80 percent to remove the feeding tube). Side note: I may have created a spreadsheet to track his feed volume, with formulas to calculate the running 24-hour average, and a detailed analysis of breast versus bottle volume. What can I say, I love me a good spreasheet.

Capture

I got back to the hospital tonight in time to nurse him at his 9 p.m. cares. This is usually our best feed of the day since they do a naked weigh-in just before, which tends to wake him up. He nursed for 45 minutes and got an impressive 52 ml from me! I wanted to high-five him. He’s also up another 26 grams, bringing him to 7 lbs 4 oz.

It’s a slow crawl to the finish line, but the little victories are what keep me going.