NICU day 96

There is a good possibility we are going home tomorrow. Emmett continued to average around 80 percent of his feed volume throughout the day, and even took 50 ml via breast this evening, which is better than he’s done at the breast in over a week. He did lose 4 grams tonight, though, so I’m not sure if that will prevent us from going home. The nurse tonight said they don’t count 4 grams as a loss and would label it no change, but she also didn’t seem to be aware of our potential discharge tomorrow, and she thought he was still on scheduled feedings. She also tried to get me to breastfeed when he was just calmly staring up at me and showing no hunger cues and had just eaten an hour before. I’ve never seen this nurse before and I must say I’m not impressed. She doesn’t seem like she knows what’s going on at all. Thankfully at this stage in the game, the nurses aren’t as critical anymore so I’ll just wait until I see the doctor or until the day nurse comes around 7 a.m. to figure out what’s next.

I will admit, I legitimately freaked out this evening after I got home from work, realizing that we could potentially have Emmett home this time tomorrow and I still haven’t installed the car seat base or even thought about a going home outfit for him yet. I also still feel like I have a million loose ends I need to wrap up at work and a ton of chores around the house I had hoped to finish before we bring him home. Amazing how I’ve had three months to prepare for this and it’s suddenly crept up and I have nothing finished. As much as I want him home, I would probably be okay if they wanted to hold us for just one more day!

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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 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.