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.

NICU day 85

Today was a pretty good day. We had some good nursing sessions, and he seems to be getting more comfortable at the breast, but because we did more nursing than bottle feeding, and because we’re still getting less volume while nursing, our oral feedings average dropped from around 60 percent to about 40 percent.

I had a good talk with both the nurse and lactation consultant today and asked them to give it to me straight: should we just be focusing on bottle feeding so we can go home? Both told me the same stat: that bottle-fed NICU babies go home an average of about a half day sooner than breastfed babies. One half day. In the grand scheme of things, does a half day make a difference?  I know this is an overall average, which means our situation could yield different results, but the nurse and LC both acknowledged  how important breastfeeding is to me, and recommended we continue practicing both bottles and nursing while we figure out feeding. Because out in the wild, he’ll ideally take a combination of breast and bottle anyway. To completely stop breastfeeding just so we can go home a little earlier might make breastfeeding at home that much harder and increase our chances of giving up altogether. What’s a couple more days, for an easier time over the next year or longer?

At the end of the day, this final NICU stretch is preparing us for home life, and the more we can replicate patterns we plan follow at home, the smoother the transition will go. I’ve had numerous nurses tell me what we’re experiencing is textbook for an early preemie; that feeding issues are nearly always the final frontier, and that babies usually have an easier time with a bottle than nursing.
Hearing this is typical makes it easier to handle, but not necessarily less frustrating. I’ve said it before, but if only we hadn’t been teased two weeks ago with the possibility of early release! After all, we’re still about a week and a half away from our original due date of August 22, which is what I’d been mentally preparing for all along. Now, if we go past that date and we’re still here, I may start handling this with less grace!

Just chillin’.

NICU day 84

Emmett is 12 weeks old today. Hard to believe we’ve been here almost three months.

Today was a pretty good day. Feeds are going much better and he even took a few full feeds via bottle last night! We are averaging around 60 percent orally, and you may remember we need to get to 80 percent over 24 hours to remove the feeding tube (though E tried to get a head start and pulled it out again himself today). The bottle feeds are definitely higher volume than the breast feeds. In fact, if you exclude the breast feeds from his averages, we’re already at 80 percent. This, of course, has me all kinds of hyperanalytical. Should we just focus on bottles for now so we can go home? Or would we ever recover from that if we did? I know babies who were able to figure out how to nurse later, but for many, lack of nursing is the beginning of the end of breastfeeding and once they get used to the relative ease of bottle feeding, it’s hard to go back. Plus, I won’t have the luxury of weighted feeds at home, or lactation consultants just down the hall to help. Can I nurse him at home and be confident he’s getting enough? Am I willing to potentially give up breastfeeding just to go home a few days sooner? Is my own stubbornness in my desire to breastfeed keeping him here longer than necessary? Lots to think about.

I love how he sleeps with his arms up. T used to sleep like this too.

NICU day 83

We had an okay day on the feeding front. After E’s 22 ml feed last night, he was pretty sleepy overnight so they just pushed the full volume through his feeding tube at his midnight and 3 a.m. feeds. At 6 a.m. he looked like he might be ready to go, but then pretty much instantly fell asleep and only got 2 ml from me. At 9 a.m. he was raring to go and took an impressive 44 ml, though, to make up for it! So I know he’s got it in him; it truly does seem to be a stamina issue. His noon and 3 p.m. feeds were 10 and 12 ml, respectively, and much sleepier. I left to pick up T before the 6 p.m. feed, and will stay home tonight. Anxious to find out how he does with bottles tonight.

Interestingly, there appear to be two schools of thought on how to address the sleepy/stamina issue. Our nurse yesterday and the day before had us attempting breast or bottle every other feed, and just gavaging the others to let him rest. Today’s nurse (a different one), said even if he only gets a few ml and falls asleep, the practice is good for developing those muscles, so we nursed every feed. I can see the merits to both approaches, and don’t know what the best way is. I just wish there were some magic bullet so we could figure this out and go home!

NICU day 82

Feeding is going better. Yesterday we were averaging 17 percent via mouth and today we’re up to 34 percent. They started alternating feeds via bottle and feeding tube, and that seemed to strike a good balance between letting him practice and letting him rest. I went into the office today and got to the hospital this evening just in time to feed him at his 8:30 cares, and he took 22 ml via breast, which is about 37 percent of his feed volume. We still have a long way to 80 percent, but it’s good to see things trending upward.

He gained another two ounces tonight and is up to 7 lbs 1.5 ounces. He’s really come a long way.

NICU day 81

Well, we didn’t turn the corner on feeding today like I’d hoped. He was pretty sleepy for most of his feeds today so they just fed him through a feeding tube for most of them, though he did take 12 ml from me early this morning, and 35 ml via bottle this evening. The nurse today was talking about the possibility of putting him back on oxygen, which would be really disappointing. He seemed to me he was doing really well with his breathing, but the nurse said he may be working so hard to breathe that he has no energy or stamina to eat. I hate the idea of putting him back on oxygen. I know it’s normal to take steps forward and backward during this process, but that would be a huge step backwards, and would mean we’re even farther from being discharged than I thought. They weren’t going to make any changes today, but would discuss more tomorrow. I just keep hoping he figures it out one of these days.

Weight was up 40 grams tonight, bringing him to 6 lbs 15 oz. Now that he’s the size of a full-term newborn I’m less interested in the weight gain, and more in his feed volume. It’ll be nice to stop obsessing about numbers at some point.