NICU During Holidays
Being in the NICU is hard at any time, but it is especially hard to be in the NICU during holidays.
Whether you are in the NICU with your babies, or you are somewhere else with other members of your family, it feels impossible to really celebrate. There is guilt from not being able to be with everyone you love, the fear of missing something important, and the sadness of missing those milestone firsts.
While it may seem impossible to find joy in the NICU during holidays, it really isn’t. It may not be perfect or the way you imagined, but your baby is still fighting, and you have the possibility of future holidays.
At the time, this may not be of any comfort, but someday you will look back and be thankful for everything that got you to where you are now.
My Hardest Time in the NICU during Holidays
We were in the NICU during the late Spring and throughout Summer. No major holidays, but Mother’s Day was really hard.
It happened about a week into our journey, so both babies were still struggling. I hadn’t even held my babies yet. I didn’t really feel like a mom to them yet. Plus, I had a 2-year-old who also needed his mommy outside of the NICU.
I still remember eating brunch with my family, and then going outside to cry. I couldn’t bring myself to go back to the hospital that day, but I did got the next morning.
The nurses were so sweet, and made Mother’s Day cards with their tiny little foot prints. I also received a wonderful package from Project Sweet Peas that included a bracelet that said Mother.
Again, I cried, but this time happy tears.
It wasn’t how I wanted to celebrate our first Mother’s Day together, but it gave me hope that there would be future holidays that we would all be together.
Micro Preemie Twins
Today, I want to share a new journey with you, which is also about micro preemie twins. They endured the NICU during holidays many, many times.
At the time I first received the email from their mom, one of the twins was still in the hospital. I’m so happy to share that everyone is together now, so look for updates within the post.
Please meet beautiful Raegan and Aubree, as told by their mom, Kylee.
Raegan and Aubree
1. Tell us about your babies.
Raegan and Aubree were born at 23 weeks and 3 days at 1 lb and 3.1 oz and 1 lb 3.4 oz on September 20th, 2017.
I went into labor with them at 21 weeks and was told I’d deliver within 24 hours and nothing could be done to help them.
They came 13 days later.
2. How long was your NICU stay? What was the hardest part?
Aubree’s stay was 114 days, and Raegan is scheduled to come home this week on Thursday or Friday. That will be 134 or 135 because we have to wait for equipment.
UPDATE: Raegan came home on day 146!!!!
The hardest part was them telling me they had less than a 1% chance of both surviving. Every time something would go wrong with one, it would clear up and then the same thing would happen with the other (brain bleeds, NEC, sepsis).
We have spent Halloween, Thanksgiving, Christmas, New Years, my husbands birthday and now my birthday in the NICU. Holidays are big for our family and we’ve been so secluded this year. I felt so guilty leaving them after a few hours.
3.Do you know what caused your premature birth?
I found out I had incompetent cervix at my 18 week scan when we found out we were having girls. It measured 2.4 which was not alarming. It was the same the following week and then .062 weeks later and was only found because I felt something was wrong.
The twins are our rainbows and our fertility drug babies. We had a loss right after Christmas 2016. I had been taking Clomid for quite a while, when they chose to give me Menopur and a trigger shot (IVF protocol without the egg retrieval). It was our “I’m done, we aren’t doing this anymore” round that we started in April. I found out I was pregnant in May.
I suffer from PCOS that is severe and was told I’d never conceive.
4.How are you and your babies doing now?
We had a relatively boring NICU experience to what they told us.
Each baby had NEC twice, stage 4 bilateral brain bleed, stage 1 bilateral brain bleed, sepsis, infections and reintubation of one of our twins. We almost lost her at 3 months old.
Now, they are 6 lb babies and very healthy considering.
It’s been hard. We are 3 hours away from them, so every call makes your heart stop.
We are slowly introducing family, and it’s taking some time, but we will get there. Our family has been supportive, but most of them truly don’t understand where we are coming from sometimes. But how can they, unless they’ve been here? We don’t do things to be hateful. We do things to protect our children.
Our milestones are a little earlier than expected. My twin that is home can roll over now from both sides. Her sister, I’m not sure because she’s not home yet.
We go to the eye doctor every 2 weeks, Pulmonology every 4-6 and start early intervention this week.
UPDATE: They are loving being reunited, and we are so happy. They are thriving. Aubree was on oxygen for a month and she is off at home.
5. What advice would you give to a new preemie family?
Trust your hospital. It’s okay to leave to eat, sleep, take a break. It’s okay to break down.
I did not cry in the NICU until I walked in at 3 months old and my daughter was re-intubated. They couldn’t tell me if they could help her.
Social workers will do everything to help you get there, get home, eat, etc.
Make mom friends. I lived so far so it was hard, but I do have a few I check in on.
I wish I would’ve stayed there more, but we couldn’t afford it.
Write everything down. I wish I knew how long they were on their Billi lights, what certain labs were, what those meds were that they had the first 10 days.
Enjoy your baby. It’s easier said than done during this time. One day they get to the point that, of course you remember their tiny, frail bodies, but you see this 6 lb baby. They look huge, and sometimes you can’t fathom how they were ever that small.
Such great advice, Kylee. Thank you so much for sharing your sweet miracles with us. I’m so happy you are all together and won’t be in the NICU during holidays again.
Please leave any supportive comments or questions below.
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