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Motherhood NICU Mom Life

Jaxon is Home! (135 Days in the NICU)

September 12, 2018

Jaxon is home!

My big “little” twin (younger by one minute), the recipient in Twin to Twin Transfusion Syndrome and the larger but sicker twin when born… is home!

It’s been 4 days now and it’s still so strange to think about and experience him at HOME. He was officially discharged on September 7, 2018 after 135 days. We were told several days in advance that would be the day but I honestly didn’t believe it until one of the residents (and one of my fave docs) walked in and handed me his discharge summary paperwork.

By the way, discharge summaries are a real emotional rollercoaster to read… starting with the first page listing his 25 (literally) official diagnoses. Ouch.

OK, and then I didn’t really get it until the pod leader came over and asked what time we were going to leave with him because they didn’t assign him a nurse for the 7pm shift change. So, like, basically… get out. 😂

Most people want to spring out of there as fast as they can with their baby, but we took our time. Mostly because it felt awful leaving Axel there alone – truly alone without even his brother for companionship. (Yes, I know they aren’t aware of each other at this age.) And, it felt weird giving up our room.

We are so lucky to have stayed in the BEST NICU in our entire province and it was fully renovated less than a year ago. Each family has a private room with all new tech, a couch to sleep on, comfy chairs, a mini fridge, a nice bright window. It is honestly very nice, and it felt like home.

Each pod has one twin room, larger and set up to house two incubators and all the necessary equipment, power and cords. With Jaxon going home, they moved Axel to a regular single room to free up the twin room, since they can be in high demand. The single room is just as nice, only smaller, but it still throws me off to walk into the NICU every day and not go to “our room.”

ANYWAY. Jaxon’s home. Wow!

He cried the whole drive home (1 hour) in his carseat which was horrible to hear, but nothing we could do about that. The first few nights were rough as he settled in. Lots of crying and feeds were all over the place. None of us slept very well at all.

Since then it’s been a little easier as we figure out what works and what doesn’t and try to get into a bit of a routine at home. Also, Jaxon likes his new toys, swing, bouncer and even his crib and sound machine. And, all the extra cuddles he gets.

There really is no feeling like bringing home your child from the NICU and just sitting on your damn COUCH. Or, eating a bag of salt and vinegar chips while you hold them (our NICU was no food allowed). Or just sitting anywhere around your house in crappy old PJs and not caring if you get vomited on by a screaming baby.

But it’s YOUR screaming baby in YOUR house. And that’s a little nicer than your screaming baby in not-your house. 🤷🏼‍♀️

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We still struggle with Jaxon’s severe reflux, vomiting, feeding issues and G-tube, and irritability. It’s still so nice to feel like a “real parent” finally, with a baby at home, not just one you go visit every day in the hospital and then go back to an empty, quiet house. Although empty and quiet sounds good when you haven’t slept in 2 days, not gonna lie. #notsorry

In our situation, it’s really tough to still have Axel in the NICU an hour away. The plan was for him to come home after a few more days but he took an unexpected turn with feeds: no longer taking bottles! We hope to bring him home in just a few more days, though with an NG feeding tube.

Life is never going to be the same again, that’s for sure!

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