Life as a NICU Mom… What I Would Do Differently

It’s been 4 years since my twins were discharged from their six-week stay in the NICU.

I’m no longer recovering from pregnancy and the subsequent surgery. My babies are no longer an hour away from my house. My feet no longer look like water balloons.

I’ve had time to reflect on my experiences.

So, for what it’s worth, if I could do it all again, here are five things I would do differently.

1. I would FIGHT to hold them more.

It seemed like a daunting task, holding those babies. There were so many wires. There wasn’t a lot of space.

The three recliners they had for the ENTIRE room were already being used. Some days it seemed like it wasn’t worth the trouble to get them out of their cozy little boxes.

not a recliner

Of course I did everything I could to hold them, but if I had the chance to go back in time, I would fight harder to make sure the process was easier.

I would set up a plan with a patient advocate. I would let them know I need a recliner EVERY TIME I visit.

I would let them know I expect to hold them for as long as possible while I rest, and encourage them to assign a nurse who was “on-board” with that plan. Oh, God… If I could do it again!

2. I would find a Facebook support group BEFORE I had those babies.

I found an AMAZING group for mothers of multiples after I left the NICU. If I could do it all again, I would find that group while I was pregnant.

How helpful it would be to ask a question about my preemie babies and have 60 responses from moms who have already been in my shoes!

3. I would take more pictures.

It seemed wrong to snap shots of my babies while they looked so sick, so pitiful. I remember thinking, “I never want to see this again. It’s too painful.”

juice day 1

Fast-forward three years, and all I have are a handful of shots I took while I was holding them. Luckily, my mother took a few while I wasn’t looking. (Thanks, Mom!)

I wish I could look back on how far they’ve come now that the sting of the NICU has worn off.

4. I would keep a journal.

No… not a long, deep, thoughtful journal. Just a few notes about what happened each day.

I would write down important diagnoses, decisions, or struggles, who I met with, or my favorite nurse’s name. It’s hard to remember those things after the whirlwind is over.

5. I would have a better plan in place for my older kids.

That seems simple enough, but I wasn’t expecting those babies to come so early. My pregnancy was relatively easy, no major issues except for the fact there were two babies.

Who knew I would be spending the next six weeks traveling back and forth to the NICU over an hour away?

If I could go back in time, I would have made a plan. The world didn’t stop just because my babies were sick.

My other kids still had to go to school and practices. They still had to eat, take baths, and get dressed. Of course my husband did his best, and our family helped out. But six weeks?!?!?!?!?! Yea, right!

*I’m revising number 5 to say I would have cloned myself.

NICU life isn’t easy, but I am thankful everyday my babies made it through.

then and now

8 Replies to “Life as a NICU Mom… What I Would Do Differently”

  1. yes, I do so totally agree! You did an amazing job and I hope others will learn from your advice. It is so hard to stick up for your baby in the NICU because you are speaking your own truth to experts!

  2. Great blog:) I often think of all these things after spending 15 weeks there as well.. glad that road is behind us .. having other kids at home and being so far away is defiantly challenging to say the least I know just how you feel . Our nearest nicu was 4 hours from home so unfortunately we had to stay there the duration. Your twins are adorable:) my boys are now 6 months so lots of apts still for follow ups but I thank my lucky stars we’re home❤️

  3. I’m so thankful that our stay in the nicu was only 10 and 13 days for my twin boys but it was definitely the hardest days of my life. My boys are almost a month old now and are doing amazing. I wish I would have pushed to hold them more as well. There were times that I went in and I wanted so badly to hold my boys but was told no because they don’t want me to pick up the boys while they were sleeping. It was hard but I did have some amazing nurses that I will miss but I won’t miss out days spent in there.

  4. Yes! More photos and especially….videos. With Nathan, the family next to me kindly offered to video him after he got sick. I declined because I didn’t want that memory. I was so. very. wrong.

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