NICU Parent Perspective: Despite a Challenging NICU Stay, We Have Many Reasons to Celebrate

September 7, 2021

“Find one good thing to take from each day.”

NICU Awareness Month, hand to Hold, preemie twins, twins in the NICU

Submitted by Hailey C, Jacksonville, FL

Our story

We always have said nothing was easy for us. My partner and I struggled to conceive our boys, going through 6 rounds of IUI before getting pregnant, as we are in a same sex marriage.

Just before I reached 25 weeks gestation, our doctor told us that baby B, Theo, was measuring in the 13th percentile, while baby A, Lucas, was in the 86th. This would require biweekly growth scans and a lot of monitoring to ensure we didn’t lose Theo. But that Friday, my water broke. I went into labor at 25 weeks and 5 days when Lucas ruptured his membrane. After a six-day stay in the hospital, I had an emergency C-section, and our boys were taken straight to the NICU.

What have you struggled with?

NICU baby, NICU Awareness Month, challenging NICU stayWe had a very long and challenging NICU stay, medically, emotionally and personally. We struggled with family not being able to visit our boys due to COVID restrictions. A neonatologist made us feel unheard and we felt that they didn’t have our babies best interests in heart. And so much in between.

Despite these challenges, we have made great, lifelong friends with some of our nurses. We felt a lot like the journey was never ending, but we finally are starting to see the light, even if that light got closer, then a little farther, then closer, then moved away again.

The process of getting home has been very frustrating. We had always hoped once we were discharged we would have some sense of what it was like for “normal” parents when they bring their baby home. Both of our boys came home on apnea monitors. We didn’t think we would still have to manage cords, wires, tubes and more when trying to change a diaper or just hold our little ones. It’s been a hard thing to come to terms with, that our NICU experience will follow us home even more so than we had originally thought it would.

What are you celebrating?

We are celebrating how far they have come. One of our boys was on the ventilator for a very long time, had two rounds of steroids, a patent ductus arteriosus (PDA) that we thought wouldn’t close on its own and was still was on continuous positive airway pressure (CPAP), even once he hit term. But in the last weeks of his NICU stay he improved leaps and bounds! His PDA closed on its own, right as we were starting to consider if he would need surgery to intervene. When he was born, even the smallest bit of stimulation would overwhelm him and cause him to desat, but now he is so active and alert and loves snuggles. I worried that he would never be a big snuggler or want affection for fear it would overwhelm him.

What support did you receive in the NICU?

hand to hold, NICU awareness month, preemie baby, baby in the NICUMy peer mentor helped get me through some of the dark days and reminded me to find something positive to take from the day, that there was a light at the end of the tunnel and it wouldn’t always be bad days.

The facebook community gave me somewhere to go with my million and one questions. Other parents would respond and tell me how I felt or how my babies were acting was normal, that they too had had a challenging NICU stay and experienced these things. They gave us different ideas on what to try and how we could help our boys. They were invaluable, and I’m so glad I found them when I did.

What advice would you give another parent in the NICU, especially with a challenging NICU stay?

Hand to Hold, NICU Awareness Month, preemie twins, twins in the NICUEnjoy the positive moments. Not every day is a good day. There are days you will leave crying and your heart will be breaking. You will feel helpless, lost and lose focus of the good things.

Find one good thing to take from each day. It can be something as small as a tiny weight gain as big as they took their first bottle or breastfed or came off oxygen. Every day these little babies show us how strong they are and how they are fighting so incredibly hard for the day they can come home with you.

Our NICU stay has challenged us in so many ways, but we firmly believe everything happens for a reason. Maybe Theo just needed help my body couldn’t give him, and that was the reason we had them so early. We are so thankful they thrived and are home with us today, after 124 and 137 days in the NICU!