Preemie Parenting: Our Own Version of Normal

Like a number of preemie parents I’ve read, I figured once we got E home from the hospital – especially the second time, when she was off the oxygen – we’d eventually pick up a somewhat regular infant experience. I mean, I understood that she would be developmentally closer to her adjusted age and there were going to be challenges, but after NICU, being home felt luxuriously normal.

When E was in NICU, twice nurses referred to her as a “micro-preemie”. I bristled a bit at that, and technically speaking, I was right: micro-preemies are usually considered babies born 26 weeks’ gestation or less and under 1.75 pounds. However, it’s not unusual to loosen the definition to include babies less than 29 weeks’ gestation and/or under 3 pounds, which E fits on both counts. Regardless, I didn’t want to hear it. E was a miracle. She had never needed a ventilator and was on c-pap for around 24 hours. She was going to be completely fine, and by ‘fine’, I mean that somewhere in my head I got wildly optimistic and figured that things were going to get much closer to what one would expect with a term baby.

Well, E is still a miracle, and I don’t use that term lightly. She smiles, giggles, and loves people.  She reaches for toys and plays now.  There’s no doubt we beat the odds big-time with her surviving at all. But despite the fact that E is doing remarkably well for how premature she was, there’s also no doubt that it’s not quite the same thing as raising most full-term infants. We go to doctor’s appointments/tests about once a week and get therapy weekly right now.

I got my first major taste of this beginning in August when E decided she was not going to eat peacefully. Prior to this, E had started occupational therapy (OT) to help her keep up and reach developmental milestones, which I had expected she might need. Eating had always been a challenge, but starting around the middle of August, the struggle intensified dramatically. When I say she wouldn’t eat, I mean she kicked, screamed, arched her little back and tried to throw herself off my lap to get away from the hated bottle.

In my drafts, there are writings totaling over six pages detailing the many visits with the pediatrician, specialists, Zan.tac, Pri.losec, changing bottles, changing techniques, and Arthur and I staring at each other in total frustration and worry as we watched our normally happy baby turn into a child that alternated between lethargy and screaming. It came to a head in mid-October when the GI specialist nearly admitted E back to the hospital but told us we could try a hypoallergenic formula as a last-ditch effort to avoid readmission. If she didn’t improve quickly, we had very little choice.

The new formula worked. E improved and was diagnosed with a milk allergy. She did not, however, get enormously easier to feed. Somehow, probably because Arthur and I are nothing if not incredibly stubborn, E has managed to gain weight and avoid a ‘failure to thrive’ diagnosis. We track every calorie. The ongoing battles with feeding continue to be a challenge.

Around this time, I also noticed something else. E has always had a few very mild contractures on her left side. We – and the various therapists that saw E both in NICU and First Steps – always assumed that the reason for these was the PPROM and being trapped for weeks in one position without amniotic fluid. The problem was that as E grew, they weren’t going away. She developed a bit of torticollis that led to a decided flat spot (plagiocephaly) on the left side of her head. With the OT and a lot of stretching, we managed to get the torticollis mostly corrected and the plagiocephaly improved.

During tummy time I also started to notice that she would push up with her right arm, but not nearly as much with her left. I pointed this out to the OT who assessed E and agreed. The left arm and leg were weaker than the right. We continued with OT and waited a little longer. The left sided weakness was mild, but continued to persist.

The weakness and contractures that were decidedly one-sided (hemiplegia) stood out as a possible neurological issue. I knew neither of E’s two brain ultrasounds in NICU had shown bleeding, but I also knew that the weakness was still present. I asked the doctor at the neonatal follow-up clinic about it, and she concurred that possibly having a neurologist evaluate was a good idea. We waited another month for the appointment, hoping E might continue to grow out of it and the appointment would become unnecessary.

The appointment was necessary and the neurologist agreed that there was a tone difference between the right and left sides. “I’d like her to have an MRI,” the neurologist told us. “She may have a small lesion in her brain and some mild cerebral palsy.” Seeing the alarmed expressions on our faces, the neurologist explained that cerebral palsy simply means that something happened that affected E’s motor skills before age 1 and reassured us that it didn’t mean that she’d never walk or have severe motor issues. In fact, the neurologist said, she expected E to keep progressing well and eventually catch up. She pointed out that E uses her left hand and it wasn’t contractured into a fist, which meant whatever is going on is very mild.  The neurologist also told us that the MRI might look normal and the issue might be due to the PPROM and restricted movement.

The neurologist also told us E needed a swallow study because of the hemiplegia. I’d refused swallow studies in the past because everyone had told me that the study checked for aspiration and we knew E wasn’t aspirating. She didn’t have the lung infections that mark even silent aspiration and no other symptoms. However, this was the fourth or fifth medical professional that had recommended a swallow study, so I reluctantly agreed and the swallow study is scheduled next week.

The MRI is scheduled for tomorrow. There’s a sense in which nothing will change, no matter what it shows. We think E is wonderful. She’ll continue with therapy. Regardless of the challenges, diagnoses, or issues we face going forward, what matters is that she’s our daughter.  We’ll love her, parent her, and fight for her, just as we always have.

What it does remind me, however, is that E isn’t a full-term baby. That this didn’t end when we left the hospital or got rid of the oxygen or finally turned in her apnea monitor. It’s meant that I finally have to start letting go of those things that define other people’s parenting experiences and embracing E’s timetable and coming to terms with accepting that E was born at 28 weeks due to circumstances beyond our control and all that entails.

It is what it is.  And that’s okay.  It’s our own version of normal.