Worry doesn’t end with the NICU: Brylee’s Story

Worry After NICU

I was so happy and thankful when my boys were finally released from the NICU. But, that didn’t mean the worry was over.

Without the help of nurses and doctors, and without the constant monitoring of their breathing and vitals, I felt a little lost and overwhelmed. How could I be sure they were doing OK? How could I keep them healthy?

Many new parents feel the same way when they bring their newborn home. And while newborns are fragile, they have a fairly developed immune system. Babies home from the NICU do not always have that strong of an immune system, and are especially susceptible to germs.

The last place a NICU parent wants to be is back in the hospital, so this worry is completely normal. However, not everyone can understand if they haven’t been in the same situation.

Today’s mother certainly understands that worry. She also has a beautiful daughter that is an amazing fighter.

Please meet Brylee, as told by her mom, Tori.

1. Tell us about your baby

Our daughters name is Brylee and she was born on February 17, 2016 at 26 weeks and 4 days. She weighed 1 lb 15 oz and was 13.1 in long.

At birth she was diagnosed with extreme low birth weight, respiratory distress syndrome, hyperbilirubinemia, bilateral conjunctivitis, persistent gastroesophageal reflux, left arm strawberry hemangioma, and ROP stage II.

2. How long was your NICU stay? What was the hardest part?

Brylee left the NICU on April 19, after 62 days. She left a little over a month before her due date, May 21.

One of the hardest parts was seeing her struggle on her bad days. Watching your baby fight for their life every single day is something no parent wants to see. Preemies are the biggest fighters and strong willed.

The hardest day was being discharged from the hospital and going home without our baby girl. We had all of the flowers, cards, and bears everyone had sent, but not having Brylee broke our hearts. Thankfully, she didn’t have many complications throughout her stay aside from the normal breathing, growing, and eating.

3.Do you know what caused your premature birth?

Brylee is our first baby, and I had the absolute best pregnancy until the day before I delivered her. I started having contractions around 11 am on February 16 and called my husband to come pick me up and take me to the hospital. My husband is in the Army, and we had went to labor and delivery at the military hospital. When they checked me I was already 4 cm dilated. I had to be taken by ambulance to an off post hospital, since military ones do not deal with preterm labor.

After a full day and night of magnesium and 2 doses of steroids for Brylee’s lungs, I had her the next day at 12:19 pm. I ended up having Chorioamnionitis, which is an inflammation of the fetal membranes due to a bacterial infection.

4.How are you and your baby now?

Brylee, my husband and I are doing very well. Brylee has had a few problems with weight gain, but we now have it under control and she is doing amazing. She is now 14 months, weighs 13 lbs and is 24 1/2 in long. She is meeting all milestones and exceeding some.

Since we left the NICU I have been crazy about germs. I disinfect her toys and our house all day everyday. I have a hard time letting her around other babies, because I am terrified she is going to get sick. We are still slowly working on getting her around some germs, but it’s a work in progress.

5. What advice would you give to a new preemie family?

Take it one day at a time and always find something to celebrate each day. I wish I would not have beaten myself up for missing a visit. I tried to be at every visit during the day. It was so hard, and if I missed one, I cried and felt like I was the World’s worst mom.

Take care of yourself, because your little fighter needs you to be strong for them. Talk to people who have been through the NICU journey. It helps so much. I found NICU pages on Facebook that helped wonders, and we still stay connected with it today. Just know that your baby is the best place they could be, and NICU nurses and doctors are heaven-sent.

Thank you so much to Tori for sharing sweet Brylee with us. Please leave any supportive comments or questions below.