I Could Survive This – The Sullivan Family Story

November 4, 2019
Sullivan family, hand to hold giving day, NICU family
Photo courtesy Sullivan family

It all started with a routine dental cleaning.

A high blood pressure reading when I went to get my teeth cleaned sent me straight to the doctor. After lying down in the doctor’s office for 20 minutes, we had no luck getting it down. My doctor made plans for me to be admitted to Baylor University Medical Center. “You are going on bed rest until this baby comes,” he said. “No more working!”

Two days later my kidneys weren’t functioning, and the protein in my urine was the highest my doctor had ever seen. Day by day the doctors had to analyze if it was safer for Grace to stay inside me or be out in the world. Two more days later, my symptoms had worsened, and I was wheeled down and prepped for surgery. I was terrified, feeling like I had no control over anything at all.

Photo courtesy Sullivan family

At 1:41 p.m. on April 28, 2018, our beautiful daughter, Grace Lynn, entered the world at 26 weeks gestation.

When I woke up from the anesthesia, I didn’t feel like a mom, but I also didn’t feel pregnant anymore. I just felt void. I was shown pictures of my sweet baby girl and provided a link so that I could watch her on a live feed from the NICU, but it still seemed surreal.

I continued to struggle with blood pressure issues. I tried to go to NICU, but I felt awful as I entered the room. I looked into the isolette and saw a tiny little human, with whom I felt no connection. I knew that she was my daughter, but I wasn’t able to process this journey of parenthood.

After a blood transfusion and blood pressure medication, I finally started to feel better and was able to visit Grace again, but I still didn’t feel like she was my baby. I was only able to place one hand cupping her head and one cupping her feet while she lay on the blanket in the isolette.

I suffered a crushing blow when a nurse informed me that due to the blood pressure medication I was taking, I could not provide my breast milk to Grace. She compassionately encouraged me to continue to pump so when I was taken off the medication, I could provide milk again. But until then, I would have to pour everything out.

My nurses encouraged me to attend the Hand to Hold NICU support group, but I was a little hesitant. A support group sounded like too much for me. But I went. The Hand to Hold Family Support Specialist welcomed me with open arms and listened to my story. Suzy never said, “I understand,” because while she had a NICU experience, each experience is so different that you can never completely understand what another person is going through. Leaving the group, I had a new hope that I could survive this because others had.

Sullivan family, hand to hold giving day, NICU family, NICU baby
Photo courtesy Sullivan family

You don’t expect to leave the hospital as a new parent, but without a baby. At home I created a routine for myself that contained several pumping sessions, making sure I was eating, two NICU visits and watching the NICU live feed. I was given a tote filled with Hand to Hold materials, and once I got home, I logged onto the website to get connected. I listed to the podcasts while I pumped, and they helped me to identify the emotions that I was experiencing.

The NICU nurses had encouraged me to go to Hand to Hold’s Mother’s Day luncheon, but I was still hesitant. The anxiety of meeting a group of strangers was too much to deal with in addition to the emotional rollercoaster of the NICU. I only went because I had my own mom with me. We sat down among other ladies and began to exchange stories. I met another mom with a similar experience, who turned out to be my NICU neighbor, and we became fast friends.

NICU Support group days quickly became my favorite days. I enjoyed getting to connect with parents who were at different stages of the journey. I shared what I had learned with the newer parents while learning from the more experienced parents. Suzy and my Hand to Hold family were there to support me through the tough times of finding out my baby had a hole in her heart and hugging me when I experienced my child nearly dying in my arms during an episode of bradycardia. Not only were they supportive through the hard days, they shared in the joy of celebrating the small milestones: holding my baby for the first time, getting to put her in her first outfit, taking her first bath, each progression made with her respiratory status, and finally going home! 

Grace is now 18 months old. She is healthy and already in full toddler form. She doesn’t walk but runs everywhere! She can talk, and she enjoys chatting with family. She loves animals. She is independent and has a strong desire to learn.

It is extremely important to stay connected during a NICU stay and in the days after. Hand to Hold was there to support me through the difficult days and celebrate with me through the happy days. I was able to get the emotional support I needed at the NICU support groups, connect with other NICU parents in person and online, and make lifelong friends because of Hand to Hold.

Photo courtesy Sullivan family

Approximately 500,000 babies are admitted to the NICU each year. NICU parents face their own long-lasting mental health challenges, including postpartum depression, anxiety and PTSD.

This Prematurity Awareness Month, we’re asking for your support to help ensure families like the Sullivans get the vital support they need in the months and years after leaving the NICU.