When Coming Home from the NICU Isn’t What You Expected

March 20, 2017

In the NICU Faye seemed like she did so well. She sailed through her two-month stay with no issues and the doctors we all so impressed with her. They called her the superstar of the ward.

This was my second time around at being a mama, so once there was talk of her coming home I was so excited. I thought once she was home I would have it all under control. After all I’ve done this before; I know what to expect, so we are good!

I couldn’t have been more wrong about anything in my life.

I felt like I had a newborn baby for about six months. I felt like she was so fussy and unhappy no matter what I did, and I wasn’t sure exactly why or how to help her. Maybe she was better off in the NICU? Maybe they would do a better job than me? I genuinely felt that way.

She was (and still is) not a good feeder. She had colic for at least six months after leaving the hospital, which was relentless. Then just as the colic fog started to lift, reflux dropped in for a while. So feeding issues were a big thing. I never fully understood what people meant when they said their baby was “a bit colicky.” Now I just think that maybe they weren’t sure or meant something else because if your baby has full on colic, it is absolutely no joke and will test you at every single level of mothercoming home NICU, prematurity, preemie, hand to holdhood that exists.

Although her weight wasn’t a concern of any doctors, I knew that she was still feeding every three hours, 24 hours a day because she was still hungry at night. I was told “Just give it until five months and she will be a different baby,” and “Oh colic won’t last for long. All babies have it,” and a personal favorite, “Why don’t you come and meet us here or there – it will do you good to get out of the house for a bit.”

I kept thinking that once she was sitting up things would get better. Her digestion would improve, gas would soon be a thing of the past and reflux would obviously disappear because she will be upright more.

I used to think a lot. The movie Groundhog Day came to mind a lot. I felt like I was living it. I felt like she was never going to get better, that this was just her, and this was how it is now.

About four months in (corrected), she started to have some tiny jumping/spasming episodes, usually in the early evening and always when she was awake. She would jump as though something startled her and her arms and legs would fly outwards and then she would scream. Sometimes only for a minute or two but sometimes a bit longer. I recorded the spasms and mentioned them to the doctor next time we saw her (which was usually once every 2 weeks because Ayla, my older daughter, would bring us home something nasty from preschool). The doctor told me to monitor her to see if it happens again. It happened again and I showed her the videos, after which she was referred to have an electroencephalogram (EEG). The EEG came back normal, so she was referred to a heart specialist who gave her an ultrasound, which also came back normal. She had her second EEG (to be sure, apparently), that came back normal, and she has most recently had an MRI, for which we are awaiting the results. There has been talk of potential epilepsy, but there has been talk of these being temporary, that she will grow out of them. We obviously are hoping for the latter.

Other than this, things did change. She did grow, and she has got better in so many ways. The colic went, and gas is definitely a thing of the past. The reflux hasn’t quite gone but it is more manageable. She’s HAPPY. She smiles all the time, at everyone. She still isn’t the best feeder, and she’s not sitting up yet. In fact she’s not even rolling over properly yet either. We were told she would do it in her own time.

Faye has physio once a week now. She is definitely behind in almost every category, even for her corrected age. I can’t wait to see her start to hit some milestones now, but not for me. I have been there with her at her worst, which lasted way too long for both of us, and I am really ready to start seeing her happy so that selfishly I can start to enjoy my baby. It’s been a hard seven months on both of us, and she has powered through test after test, exam after exam after assessment after screening after milk change and so on. A true champ.

For the longest time her health was the only thing I ever really wanted, and although things didn’t exactly go to plan or how I would have hoped once we got her home, now I am faced with the joys of watching her grow at her own little pace. She is by far the most determined and toughest little cookie I know.