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 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 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:

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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 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.

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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.