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NICU Mom Life Tube Feeding

The Last Step in the NICU: Conquering Feeding

August 25, 2018

For some almost-term (or term) babies, feeding is all they really need to learn in the NICU. These babies are called “feeders and growers” and are usually only in the NICU for a week or a few weeks at most, and are otherwise healthy.

My boys have finally entered this stage… 4 months later! It’s hard to believe we’ve been here for 4 months (121 days). In the beginning, their odds of survival were grim, they crashed almost daily, and the doctors sat us down for many serious conversations about life or death.

And now, we’re here!

The most coveted and most frustrating time in the NICU: figuring out feeding.

Conquering NICU Feeding

I naively believed that babies just knew how to eat. Most term babies do but when you start life a little or very prematurely, you’re a little behind the 8 ball. In the beginning, I was so set on breastfeeding. I really wanted it to work and didn’t see any reason why it wouldn’t.

At 35 weeks gestational age, my boys were well enough to start trying to breastfeed. Jaxon first, and Axel about 2 weeks later once he was off oxygen. We tried and tried and tried. Sometimes I thought it was successful but they couldn’t actually transfer much milk out. Certainly not enough to gain weight.

We tried breastfeeding for almost 6 full weeks. It was exhausting to try to breastfeed 2 babies on a Q3 (every 3 hours) schedule and then pump for 30 mins after that, around the clock. Not to mention all the nipple biting, chomping, bleeding, extreme pain and so on. Yowza.

Conquering NICU Feeding

At the 6 week mark, we had to introduce bottles to keep things progressing in the NICU and to teach our boys how to eat. I was devastated but then an OT told me the hospital would be ecstatic if both boys came home eating via mouth at all, and that most babies with bilateral grade 4 bleeds like them went home with G-tubes.

WOW. That blew my mind.

Every time I find myself sad something didn’t work out, something worse seems to happen to make me wish that previous thing was my only problem. Breastfeeding didn’t work out? Sad, but I assumed bottles would work. Oh, that didn’t work for Jaxon? It’s a G-tube… it’s like constantly going down a progressively shittier path just when you least expect to.

Here we are, with the boys now at 44 weeks gestational age aka 1 month corrected age, and Jaxon has a G-tube now, like the OT predicted. However, he defies odds and DOES take bottles sometimes! He will usually take about 1/3rd of it before becoming too irritable and disorganized to finish it.

Conquering NICU Feeding

Jaxon after his G-tube surgery, still healing!

“Disorganized” in this sense means he wants the bottle, but cannot coordinate his sucking, swallowing and breathing enough to keep eating and/or he just pushes his tongue around it and doesn’t get a good seal on it. We then put the rest of his milk through the G-tube, and try again at the next feed.

Jaxon has recently been taking the occasional FULL bottle (110ml)! Which is AMAZING. I just know he can do it and hope we only have to use the G-tube as backup for a few months. If not, that’s okay too, but I have faith that he’ll be eating on his own.

Conquering NICU Feeding

Axel watching over Jaxon after his surgery.

Axel is on the fence, the doctors say. He gets tired out easily due to his chronic lung disease (BPD), but he can and will take full bottles. Other times, he likes to snack – waking up every 1.5-2 hours to eat smaller volumes. This is frustrating because in the NICU, they like the babies to stick to a 3-4 hour schedule around the clock to make their jobs manageable and easier… buuuut that’s not how babies work sometimes!

Every morning when we come in, we find Axel’s NG (nasal feeding tube) back in. It’s so frustrating, because we know he can do it! Some nurses have admitted they don’t have time to try feeding him at night. It is a process taking about 45 mins to an hour because he needs to be paced a lot, burped a lot and held up for 30 mins afterward to avoid puking due to reflux.

Conquering NICU Feeding

Axel!

Basically we have about a week to prove that a) Axel can take his full bottles (or an amount that is reasonable enough to consume) and b) Axel is gaining weight. Otherwise, they’ll want him to get the G-tube surgery as well.

We’re trying to avoid that for him since he really doesn’t need it! In Jaxon’s case, he does, since he isn’t consistent and the tube will ensure he gets proper nutrition for growth which is so important not only for the physical body, but for brain development as well.

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Conquering NICU Feeding

Jaxon!

Wish us luck as we keep trying with the Ax Man! My husband and I are taking turns staying overnight to feed him every single time ourselves, to prove that he can do it and so that the nurses don’t put his NG back in.

C’mon, Axel, you can do it!

Passing this last hurdle has us pretty much on the way home… Axel still needs his eye surgery for ROP and is being followed closely by neuro for his hydrocephalus. Jaxon is recovering from surgery still. But… with the feeding piece locked in, we should be able to come home in 2-3 weeks we hope! AHHH!

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