Bringing your baby/babies home from the NICU is a huge day. It’s a cause for celebration!
But let’s not kid ourselves that you walk out the doors and it’s happily ever after. It’s more like you realize you should have listened to the nurses and slept in when you had the chance. (Seriously. Get sleep.)
It’s also a really big adjustment for your baby! Our guys both were really fussy the first few days they were home. Almost until they realized they were here to stay, we were here, and we got into a sorta routine.
Aaaand it’s a huge adjustment for us as adults too.
For us, with many longterm medical issues, we have a lot of followup doctors appointments all the time. The day after we left the NICU was our only “free day” at home. It was wonderful to not have to go anywhere and to focus on our twins all day long, but this time at home isn’t without its own challenges either.
Jaxon came home on a G-tube for feeding and Axel has an NG tube (the nose one). We still try a bottle with each of them every feeding time (approx every 3 hours). Jaxon will usually take his bottle, but Axel maybe only 25% of the time and even then, will only eat about 25% of it.
So we do end up using the tubes a fair amount, and every time in Axel’s case especially.
We are so grateful these feeding tubes exist so that our boys can grow and get nutrition (although they are both still off the charts, in a bad way, weight and length wise). But, it often leaves us feeling more like caretakers or nurses than parents.
I’ll repeat that: I often feel more like a nurse than a mother.
Not that I’m like a real nurse. Their jobs are really hard and consist of TONS more medical knowledge than just managing feeding tubes. Like, saving lives and things. I don’t do that. But by that comment, I just mean that with managing all the boys’ medical needs, it doesn’t leave a lot of time left over for just cuddling… something that I feel should be happening a lot more at this age. We do still get cuddles, especially after feeds as we need to hold them up for 30-45 minutes after to potentially avoid puking (works about 50% of the time).
Or, just, I’m not sure… we are always in “go go go” mode to making sure we’re giving meds on time and feeding them enough that there isn’t much downtime to just chill and ENJOY our babies.
Here are a few examples of things we have to do multiple times a day that parents of “normal” babies don’t: *
- Plug in a syringe to Axel’s NG tube, draw back on it until stomach contents come out and put that on a test strip to check the PH level. (To know if his NG is in the right spot in his stomach for feeding. If it is not, it could go into his lungs and make him very sick.) We do this before every feeding.
- Get countless syringes of sterile water for “flushing” – clearing both boys’ feeding tube lines after delivering medications (as they can stick to the lines) and feeds.
- Preparing all feeding tube parts: bags, syringes, priming the lines, configuring the pump (gotta do math y’all – mL per hour and max volume), and actually running the feed, when a bottle doesn’t work.
- Preparing sterile water.
- Taking inventory of medical supplies like syringes, feed bags, medications, spare feed tube parts, gauze, face tape, cleaners, etc – and ordering (and paying thousands of $$$) all supplies.
- Giving medications around the clock (on a set schedule) via mouth or tube.
- Cleaning Jaxon’s G-tube incision site and monitoring growth of granulation tissue.
- Writing down every feed time, volume taken, diaper counts and medications on our homemade paper charts.
- Calculating their daily TFIs (Total Fluid Intakes) to ensure they are getting enough to eat to grow, because their own hunger cues and demands are not reliable like other babies’. TFI is calculated as ml per kg – so Jaxon who is 4600 grams with a minimum daily TFI of 140ml/kg needs to eat 644ml a day (140 x 4.6 = 644), approximately 92ml every 3 hours or 108ml every 4 hours.
- Taking weekly head circumference measurements to a) ensure Jaxon’s shunt is operating well (along with other neurovital signs) and b) check if Axel’s head continues to grow at a fast pace, which would mean he likely needs a shunt to control his hydrocephalus as well. We report any odd findings to their neurosurgeon (who, sidenote, is the BEST and one of the leading pediatric neurosurgeons on the continent who happens to specialize in post-hemmorhagic hydrocephalus… we are LUCKY!)
- Schedule a myriad of appointments and follow up on many phone calls (docs, nurses, pharmacies, government, etcccc)
- Do weight checks every other day.
- Get monthly vaccines for RSV (any baby born before 29 weeks should get this vaccine monthly from November to February to protect against this deadly disease that can look just like a common cold in healthy children and adults! More info here.)
- And shoving a plastic tube up Axel’s nose and down his throat when he needs it changed.
(* And yes, I don’t like using the word “normal” but not sure how else to put it. Non medically complex babies? You get the idea.)
Besides all our daily care stuff, there’s a big emotional piece that comes with leaving the NICU, too.
It’s always the goal of being there to get OUT but once you are, it’s a big mental shift. Suddenly we’re just out in THE WORLD. Not alone – we have a wonderful pediatrician for the boys and despite our many medical bills and loss of income, we are blessed to live in a country that cares for its citizens by offering paid family leave which helps keep us moderately afloat. (Seriously, we feel so blessed to be Canadian and love our country!!)
But instead of seeing something funky on your baby (eye goop? coughing? wheezing? how much mucous is too much mucous?) and having 100+ top-of-their-field doctors and nurses to ask about it, you have to actually make an appointment and successfully leave your house with two refluxy, colicky babies. COOL… said no one ever.
There is something to be said for access to great minds, 24 hours a day on a whim whenever you have a question or the slightest concern.
I did sneak in some time to watch Suits while they napped. 🙌🏼
Our First Outing
Our first time leaving the house all together as a family of four was to go to a pediatrician appointment. Not glamourous but that’s how our life is!
The office is close to our house which lulled us into a false sense of security. We had to get up at 6am to leave the house at 11:30am. 😂 Oh man.
I also had the idealistic notion that we could grab a coffee at the Starbucks drive thru in the same complex on our way home, or maybe even grab a donair. The best donair place is downstairs and the whole clinic smelled like delicious donair the whole time. Mmmmmm
Anyway the appointment took awhile. The boys got hungry. My husband fed Jaxon by bottle which went okay. I attempted to feed Axel but he only took 30ml by bottle. But was crying and cuing he was hungry. He is, but can’t figure out how to take the bottle again when he comes off it.
Anyway. Cry fest continues. I know we need to get right home so we can NG him the rest of his milk. Part of me thought of going into Starbucks and running his milk through a syringe into his feeding tube by gravity. It wouldn’t be that hard or noticeable to do but I am definitely not ready to feed these boys in public. Or to really do anything in public.
So, back home right away it was. I was hoping for a small luxury of being outside in the world and drinking a coffee. Maybe another day that will happen.
Of course when we got home, Axel puked up the 30ml I gave him (from the car ride). We NGed him 75ml and he puked that all up too (all over my husband). Then cried because he’s hungry. Which is so hard but we had to give him a 30 min break before feeding again. He was able to keep the next one down.
Because of their growth issues (off the charts for weight due to their prematurity), every ounce of weight matters and every vomit means it’s calories he didn’t get. We have to watch both of their growth charts so carefully.
Here’s hoping the next few weeks treat us well as we head to many more appointments!