NICU Follow-Up


For whatever reason, babies that spend time in the NICU at the local hospital are put into a  follow-up program for a number of years post-discharge. The appointment runs basically like a well-child visit, but calculations are all done based upon the child’s corrected age, or how old he or she would be if born at 40 weeks.

I do not like going to these visits for many reasons, the first being that the drive in is exactly the drive that I  took from December 18, 2016 until March 22, 2016. So from the date I started daily fetal monitoring for the high-risk momo/mono twin pregnancy, until the day Baby B, my sweetness, was discharged from the NICU, 32 days after being born. While there are still so many tender feelings I have for my pre-natal nurses, and the girls’ neonatal nurses, there is still so much pain and fear associated with this period in my life. Secondly, the girls’ development is gauged on their corrected age, once again reminding me that they are not reaching their milestones as a full-term baby would. 

The girls are weighing in at 15lb 6oz and 17lb 6oz. For 9 months old, they are both below the fifth percentile. For 7 months, their approximate corrected age, E is still below the fifth, and A is between the 10th and 25th percentile. A few weeks ago they both sat up unassisted and we were just so thrilled. The usual is 4-7 months (their big sister was 4 months) so even with their corrected age, they are at the end of “usual.” But just watching their movements it is clear that neither one is anywhere close to crawling or pulling up. The muscle strength just isn’t there.

And please don’t tell me I should be patient and not push crawling because it’s “easier” when they don’t crawl. I have a toddler who at times I feel is the spawn of Satan himself so nothing is easy at this point anyway. One thing I am really happy about is that they were born at the beginning of the year. This means when they do start kindergarten they will be five and a half years old. 

About a month ago, the Early Intervention team came out to evaluate A because I felt she just wasn’t where her sister was. While she did perform at an age below her corrected age, it was just too close for them to say that she required services. What they noticed about her was also discussed by the NICU follow-up doctors. They symptom itself is called hypotonia and can be just that or it can be caused by neurological abnormalities or certain conditions. It’s referred to as floppy baby syndrome. She can sit up, and she can hold her head, but she has hypermobility of her joints (her limbs are very bendy), and low muscle tone in her major muscles. It is expected that she will be late (later than just her corrected age) at crawling and walking. I was told to call them back if she wasn’t crawling at 11 or 12 months. 

Sigh. 

Both have been spending more time on their bellies, despite still hating it and making a fuss, and practicing standing. It’s just frustrating knowing that she will be behind but there’s really no way I can help her. And it’s becoming really obvious when I pick her up. My arms slide right up from her armpits because her arms are so floppy. It’s hard to get a grip on her sometimes. 

I feel horrible because there isn’t more I can do. But any parent of little ones can agree that the days are just ridiculously busy. Add a toddler in and things just become impossible. My chores get done when the twins nap and I can occupy the toddler in the high chair or put her in her playroom. The rest of the time it’s diapers and meals and snacks and errands and playing on the floor. While I am relieved that she didn’t qualify for EI put at the same time know that she could really benefit from home visits. 

As frustrating as it is, I know that I really need to step back and look at the big picture. The twins are healthy and happy. They beat the odds and are here. Who cares if they take a little longer to reach their milestones?

Oh yeah, there is one more reason why I dislike the follow-up clinic. And this is just because it annoys me to no end.  It is the must unfriendly place to navigate with a stroller. The ramp is at the back of the building, the elevetaror at the front, and no doorways are automatic. Getting in the doors with a double or triple stroller is ridiculously hard. And then I’m the office, the rooms are so small that there is no room for the doctor’s once the stroller is inside. The triple doesn’t even fit. And there is a barrier wall to section off the waiting room that makes it hard to navigate with a stroller. Apparently the person who designed this space had no idea who the patients were. 

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