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  • Renee Burns

The 1 year NICU follow-up: Expected, and unexpected news

It’s a 6-hour round trip to hospital where the girls were born. In their first year of life they’ve done this drive more times than I can count. We decided to stay in that specific hospitals network due to the wonderful care we received there from my stay in antepartum, to labor and delivery, to postpartum, to NICU, to all the specialists that have followed our girls since. Yes, it’s a choice we make to do the long drive, but we believe it is worth it. Heck, our NICU follow-up doc is even part of a Netflix mini-series on babies development! (he’s a leader in the field of all things nutrition and infancy) And…our primary NICU nurse drove into the city on her day off to say hi and give our girls some extra snuggles. AMAZING…So, yeah…we can NOT say enough about how awesome our time has been there.

Even though it’s our choice to make the drive, it’s still a LONG, hard day. This visit was extra challenging because I am still on crutches, so navigating the medical campus was a bit more cumbersome than normal cumbersome with twin 16-month olds.

Our daughter whose water broke at 22 weeks gestational age had chest xrays, and an appointment with her pulmonologist prior to their NICU follow-ups.

Chest xrays for a ‘1 year old’ who just sat in a car for three hours aren’t fun- lots of screaming, wiggling, and needing to by physically held down to get the right shots. Add COVID restrictions, a twin, and a parent on crutches into the mix, and it’s a real logistical party…but we made it work- as we do.

We figured out how to lock my crutches into the stroller, which I was able to use for support, and I hobbled around with Eloise while dad and Viv did xrays. We did a baby switch on the side of the road when my husband came out, and I took over with Viv to take her in to see her pulm doc (in another building of course). My husband stayed outside and wandered the streets with Eloise.

We learned that Viv still has some “dark spots” on her lungs, but that there was nothing new, YAY! She will now have her 3rd swallow study to see if she gets cleared to start taking un-thickened liquids. Currently, EVERYTHING we give her through a bottle needs to be thickened (unless it’s applesauce or a puree). What that means is measuring EVERY liquid we pour in and stirring in the appropriate amount of rice cereal to a certain viscosity- even with water. So, fingers crossed the 3rd times a charm!

We will follow up with that doc in 6 months, hopefully after she’s mastered taking straight liquids (milk.formula.water…etc)…Hopefully she gets to try liquid before her 2nd birthday!

We expected all this, and have let go of the traditional developmental trajectory of a full-term baby, obviously. It doesn’t make it any less emotionally, or logistically less taxing, but it’s not new news to us.

After an awesome little “picnic” outside of the hospital, sitting on a blanket on cement by our car, visiting with our girls primary NICU nurse, we went into the hospital as a family of four for the 1st time since last summer.

My husband pushing the double stroller, diaper bag in tow, me on crutches with my leg in a full brace waddling next to him- we were quite a scene. We made our way to the 12th floor- the top floor of the hospital. After spending a third of a year there, we’re intimately aware of what specialty is on what floor- 1st stop: 4th floor- antepartum, labor and delivery, and NICU….2nd stop: 7th floor- postpartum…3rd stop: 11th floor- NICU post-intubation… 5th floor; readmission for GI specialists, 2nd floor: pediatric surgery…Basement: Speech and PT outpatient services, 1st floor: radiology, and most recently- 12th floor, or the “Journey clinic”: NICU-graduate follow-up. And not to mention the other buildings for optometrists, pulmonologists, and gastrointestinal specialists…

Anyway- I posted a video to the Raising Peaceful Warriors facebook page the night we returned (last Friday) reflecting on how going to that specific hospital feels like “going home” with the girls, but at the same time, we’ll be very happy when we no longer have to make the trek.

When we got off elevator at the 12th floor we were greeted by 2 psychiatric doctors who administered developmental cognitive testing with the girls. My husband went with one, I with the other. Into individual rooms we went, where we sat with the doc, each of us went with a child. They worked with them to perform a number of tasks, checking off boxes (or not) depending on how our girls responded. Being in the field of mental health, diagnostic assessments, and testing, I had my own judgments…but sat back and let the pediatric pro’s do their thing.

After that, we were re-joined in an exam room where there were 5 other docs/nurses/interns- plus the 4 of us. Chaotic is an understatement. It’s undress the girls, take all vitals, poke and prod, answer lots of questions, listen to recommendations…and allow for observations. All of this, however, is also totally expected.

Once the numbers are charted, and the babes are dressed, the head doc and psychiatrist come in to go over all the results of the poking, prodding, testing, etc, This is when we have prepared ourselves for the “unexpected” during past visits.

This time, the doc (who we’ve worked with for over a year at this point) comes in and calmly says, “Do you want the good news or the bad news first?”….stomach drop, lump in throat grows instantly….

Me:“Um- I guess the bad news…”

Doc: “You have really smart daughters”

Me: silently staring at him…

Doc: “So the good news is you have really smart daughters”….

Me: uncomfortable…”hahaha”

So- turns out our girls both scored pretty well on their cognitive testing- unexpected news- and a bit of a surprise after all the judging I was silently doing during the assessment. The “bad news” with cognitively “advanced” toddlers is when language is not yet developed what can result are bigger emotional outbursts and negative behaviors…so we’ve got our work cut out for us to help their language abilities catch up with their overall cognitive abilities.

Unexpected, but positive news to receive this time. All other results were nothing new to us- keep feeding ‘em, they’re small- but they’re catching up for their adjusted age. Keep Viv working with a speech and physical therapist to help her correct her stance, in hopes to help her walk without needing braces, and continue to be followed by pulm, GI, and nutrition specialists.

Phew, big day!!! The babies instantly fell asleep as we started the three-hour journey home. For us, we shared our highs and low’s of the experience, called our families, turned our podcast back on, navigated the Friday afternoon rush hour traffic, and made it home in time for dinner. We did however skip bath night- and ALL enjoyed an early to bed evening.

So there is it- a detailed account of the big NICU- follow up! Thanks for following along. If you are, or know someone who is struggling with fertility, navigating a NICU, specialist, or general pediatric medical system…send em’ our way- I feel like we’ve really gotten the hang of this stuff at this point!

And yes, even though NICU-follow ups can feel like “going home”, we’ll be celebrating the day when we’re cleared of the specialists!


Mama Burns



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