Stories from Preemie Parents shared by NICU Notes

I was recently scrolling through Instagram and I came across one of @nicunotes posts. I started reading and found it to be very inspiring so I wanted to share some of the stories with you. One thing that sets these stories apart for me was the page "What I wish I knew". I thought this was a great resource for parents just starting the preemie journey. Here are a few of the stories, to read more please visit @nicunotes on Instagram.

“Mckenzie aka Kenzie Pooh was born at 27 weeks and 1 day

Length in the NICU – 99 days

Monday, Feb 3, 2020, we went from a regular glucose test/checkup at 26 weeks to 3 cm dilated, and 10 days in the hospital. My doctor was preparing me to be in the hospital for at least 1-2 more months.

They did NOT want me to move a leg! NO SHOWERING myself, NO walking to the BATHROOM and only liquids -- However, Kenzie had other plans. I gave birth on Feb 8, 2020, to a 2lb 2oz little warrior.

Our journey was challenging from several blood transfusions, trying to learn and be an advocate for my 1st born, and two start-over countdowns for her to come home because she kept having bradys, and on top of all the stressors - COVID-19 hit!

Thank God for my fiancé and family - We made it through STRONG!”

What I Wish I knew - Stay positive and that she was going to be ok. I wish I knew more of my rights. It's ok to take a day off.

Shared by @kenziepoohstory and



“My daughter was with the many wonderful nurses in the NICU at LVHN for 5 months from the end of 2015-2016.

Name: Mia
Born at 23 wks 3 days weighing 1lb 2oz
5 months NICU stay

My husband and I married while my daughter was in the NICU and the nurses got together and decorated our daughters room. They made cookies and bought in sparkling cider. It was the sweetest, most thoughtful thing I’ve ever experienced.

I always appreciated my NICU nurses but now that I’m a nurse myself I really understand how amazing these nurses were! They were my shoulder to cry on and lean on. They were my therapists and they saved my daughter’s life!!

It takes a really special person to be a NICU nurse. These nurses did well above their pay grade and showed so much empathy and compassion! They are passionate about these babies and I am truly grateful for every single one of them!”

What I Wish I knew - "Take pictures and videos!! I did not take many pictures or videos for the first 2 months because I did not know if my daughter was going to survive! I regret it now because it's a good reminder of how far she's come and what a miracle she is."

Arhaan was in NICU for 4 months “My journey was not easy. The first trimester was pretty hard. I was bleeding throughout and was diagnosed with ‘subchorionic hemorrhage’ in my left ovary. I was told that it wouldn’t harm my baby and the bleeding would stop on its own.

I had limited my physical activities and was just focusing on taking care of myself. The start of second trimester was wonderful. I started feeling the kicks and I enjoyed every moment of it.
The 20th week scan’s report was perfectly fine and I got to know that it was a baby boy growing inside me.

As thrilled as I was to enjoy this phase, little did I know that God had another plan for me. As I was reaching towards the end of 22nd week, my water broke. Something unusual to happen!! Feeling panic and dread, I rushed to the emergency room of one of the hospitals.

I was immediately admitted and was put on IV fluids. The doctor came and did not give me good news. She said there were high chances that I might have to terminate the pregnancy as the baby might not make it. Babies generally don’t survive at 22 weeks as their lungs are not fully developed.

I was scared to death.

After a long discussion with the doctors, I was transferred to a different hospital which specialized in premature deliveries. A team of doctors and NICU came in to see me and explain all the possibilities or what might be the consequences of going further with the pregnancy.

I was told that many babies born at 22 weeks can magically survive. I could see a little ray of hope. They made me sign all the paperwork and suddenly I got a feeling that yes, my baby will make it. I was so positive. I kept on talking to my baby throughout, asking him to stay in for as long as possible and saying that he’s the strongest boy in the world.

I wished for many days to pass while I was stuck in one of the rooms of the hospital. With the grace of God, I managed to keep him inside me until 28 weeks and 2 days. I still can’t believe that I kept him inside for this long. All I can say is that what kept me going was constantly talking to him while he was in my womb.
I request all the mothers reading this to try talking to their baby and you will be amazed how they revert back!”

Shared by @mom_of_a_nicu_baby

What I Wish I knew - The three most important ingredients you need to make your NICU journey a little sweeter and less hard are:

Faith: this is what kept my husband and I strong throughout because we had full faith in the team of doctors and nurses. We believed that they were doing their best to treat our son and indeed, they did!!

Hope: we heard many stories from other parents at NICU; how they saw miracles happening and we hoped the same for our little one.

Pray: there comes a time when you feel like giving up so bad - that moment you look at your child, all your worries transform into prayers.

So just hold on tight! Have faith, don't lose hope, and keep praying!! 

A miracle will happen.


“Hi! My name is Rene Baker. I’m a Registered Nurse in a level 3 NICU. We care for some of the sickest babies, including those born at just 24 weeks. I have a unique perspective as a NICU nurse because I myself have had 2 premature babies!

This is my son Jameson. My water broke when I was 24 weeks pregnant. He was born at 25 weeks 4 days after my body developed an infection; this makes him a micropreemie. He weighed 1lb 12oz at birth.

He is currently on day 65 of his NICU journey, with no clear end in sight. He has an uphill battle with his lungs, but he’s a fighter!

I have a passion for helping families who are navigating the NICU as well as helping families with life after NICU. Check out my pages if you’d like to follow along our journey 💙”

Shared by @jameson_strong

What I Wish I knew - I wish parents knew that we truly love your babies like our own. Our hearts break when things go poorly. We don't stop thinking about your baby when we get off the shift. many of us will call to check in on "our babies" even on our days off!

To read more inspiring stories, please follow @nicunotes on Instagram. Feel free to contact her and share your story, and be an inspiration.

Thank you for reading,