Navigating an Unexpected NICU Stay: The Boyd Family’s Story

June 29, 2015

Earlier this spring, Maggie and Nick Boyd were declared the winners of Hand to Hold’s NICU Grand Prize Giveaway, which offered them an opportunity to share their story and raise crucial funding to help further Hand to Hold’s mission. Their winning story gives them the opportunity to present a $5K prize package to their son’s NICU, including a Kangaroo Care chair from IOA Healthcare Furniture, Zaky sets for developmental care from Nurtured by Design and Boppy pillows to make feeding easier. This summer Hand to Hold and the Boyd Family will deliver the items to the NICU at Seton Medical Center in Austin, Texas.

Teddy's First Days at Home

First Days at Home

Nick and I were both so excited to become parents and start a family. We were married in February 2014 and found out we were expecting in April. We didn’t waste any time! We were blessed with an easy pregnancy–no morning sickness and very few aches and pains. When I hit 30 weeks, I noticed my son Teddy wasn’t moving as much as usual. After trying all the old wives’ tales to get him going, I made an appointment with my OB (in my mind thinking that I was being really paranoid). At that appointment our OB did an ultrasound, put me on the
monitor for 30 minutes or so to track his heartbeat, and let us know that everything seemed just fine. Two weeks later, I was still concerned as his activity level hadn’t increased–call it mother’s intuition–so I made another appointment. My OB conducted another ultrasound, and again I was put on the monitor. Only this time they heard a very slow heartbeat and admitted me to the hospital for more continuous monitoring.

We, of course, were concerned, but thought they’d watch him for a few hours to ensure everything was fine and then send us on our way. We were so wrong. The monitor showed Teddy had significant and frequent decelerations in his heart rate. A perinatologist was called in and he administered a more detailed ultrasound which showed that Teddy was three weeks behind in growth rates. He had what is called intrauterine growth restriction (IUGR). Following this diagnosis, the nurse came to give me a steroid shot, which she explained would help spur along his lung development. The lungs are one of the last organs to mature, so this is always a concern for preemies. My OB told us she’d be surprised if he didn’t come in the next 24 hours.

We were admitted to the hospital at 3 p.m. on November 12th. We were up all night, while nurses continued to monitor Teddy and report back to the doctor. If his heart rate dropped too low, they were going to have to get him out ASAP. It did, and they did. Teddy was born by emergency C-section at 5:28 a.m. on November 13th (which coincidentally enough is his grandfather’s birthday). He was 32 weeks and just 2 pounds 11 ounces. I was shaking from the adrenaline and the freezing cold operating room, but Nick kept me calm and held my hand while they performed the surgery. We had no idea what the outcome would be, so when we heard Teddy’s strong, loud cry, we rejoiced. I was able to see him just long enough for him to wrap his tiny hand around my outstretched finger before they whisked him away and up to the NICU.

Discharge Day

Discharge Day

There they conducted a battery of tests. Teddy had difficulty breathing and was put on a CPAP. The major concern, however, was his extremely low platelet levels. He was given two platelet transfusions, which were effective in stabilizing his levels. Bleeding is always a possibility with low platelet levels, and an MRI detected that Teddy had a level 2 (out of 4) intraventricular hemorrhage (IVH). Hearing that your son has experienced a brain bleed causes all sorts of worries and worst case scenarios to pop up in your mind. We were told by the neonatologist that these less severe hemorrhages typically resolve on their own, which, thankfully, Teddy’s did.

We were in the NICU for a total of 51 days. During that time, a friend of Nick’s mentioned Hand to Hold to us. I was desperately searching for answers–not just medical answers–but advice on how to navigate the emotions of the experience. We read through the articles and resources provided by the Preemie Babies 101 Blog and Life After NICU Facebook page. It was so reassuring to read about parents with stories just like us–families who shared our same feelings and fears, but had made it to the other side. The NICU experience can be very isolating, so those resources helped us not feel so alone.

Teddy-and-his-sweet-smile-300pxOur birth and first few months with Teddy were not the “normal” experience. It was neither what we envisioned, nor what we planned for, but this is the path that was meant for us. No words are adequate to describe the worry, frustration, fear, exhaustion, and helplessness of the experience. If you’ve been there, you know. I have a renewed awareness of the fragility of life, and an unending appreciation for the doctors and nurses who helped heal Teddy. Miracles do happen.

The worries and fears from the NICU turn into different worries and fears when you bring them home. For the most part, our family and friends were very understanding about us not having visitors or taking him out places. We shared the Hand to Hold website with our families to help them learn more and fully understand our concerns. Those first few months home are extremely isolating. As Teddy continues to grow and develop, our worries have subsided a bit. But don’t even think about holding him until you’ve washed your hands!

It’s hard to give any single piece of advice as every family’s experience is so personal to them and their child. Except, maybe, “Don’t google. Get off the internet!” I think that advice applies to everyone in any medical situation. At the time I wondered how could I talk to others when each family’s experience is so unique, but Hand to Hold showed us that other people have been through the NICU and made it home. That made a world of difference to us. We love Hand to Hold and are so appreciative of what they do to help NICU families like us.