Tiny babies, big love

Jennifer Degl’s straight-from-the-heart memoir, “From Hope to Joy: A Mother’s Determination and Her Micro-preemie’s Struggle to Beat the Odds” chronicles her harrowing journey. It’s a touching and riveting story, filled with love, determination, strength, hope — and finally, Joy.

Degl, her husband John, and their three boys live only 40 minutes north of the city in Westchester. The family remembers all too well the grueling ordeal that became their daily existence, and the emotional roller coaster they endured after their miracle micro-preemie Joy (now 2) burst unexpectedly into the world. The author details her troubled pregnancy, the scary delivery, and Joy’s struggle to survive. For a long time, it was one step forward and four steps back.

Tammy Scileppi: It’s been two years since your child left the NICU. Please tell our readers how your daughter is doing, and what she’s like.

Jennifer Degl: Joy is doing very well! She is an energetic little lady who is determined to keep up with her three big brothers. Joy wakes up each morning calling, ‘Mommy, Mommy!’ and if I don’t answer her within a few minutes she switches to ‘Daddy, Daddy!’ She just started pointing her index finger in the air while saying, ‘be right back,’ before she runs away, laughing.

Joy asks for her hair to be done each morning, after she is dressed. She loves to point to pictures of babies and puppies because she can say those words, as well.

Developmentally, Joy is closer to her due date and not her birthday, which is what doctors expect of such an early preemie. Joy was born four months before her due date, at the brink of viability, and this is where her brain development seems to be at. She rolled about five months after most full-term babies roll, and she walked a few months after most other full-term babies walk. The same applies to talking. That being said, Joy sees a speech therapist twice a week, as well as an educational expert twice a week, and both of these women work to catch her up.

We are very lucky that Joy does not have any physical disabilities, such as cerebral palsy. Disabilities like CP are very common in micro-preemies (babies born before 27 weeks gestation). Micro-preemies typically have issues with their eyes, and as far as we can tell, Joy has normal vision.

TS: Tell us about your boys. Are they protective of their little sister?

JD: The boys each have their own special relationship with Joy. Sean (9) carries her around the house after she asks him to pick her up. Jack (7) enjoys tickling her. And Shane (5) and Joy seem to share an unspoken language, where they play for hours making silly sounds at each other. But overall, they all include Joy in their playtime and also help us encourage her speech by trying to get her to pronounce words correctly.

TS: Please discuss the following topics from your personal experience:

Maintaining normalcy at home with a baby in the NICU

JD: This is difficult for the most organized parent, but it is possible. I would suggest one or two days a week that you do “normal” things with your other children and just visit the NICU in the evenings on those days. Maybe even take a day off of visiting. You will feel wonderful after spending time with your family, and your children will feel like life is normal.

TS: Involving siblings in the life of a baby in the NICU

JD: This can be hard if the siblings are very young because they cannot tolerate long visits to the NICU and they can also be loud and full of germs. We brought the boys to the NICU only a handful of times, but showed them pictures and videos of Joy almost daily.

Another fun thing we did was buy preemie undershirts and onesies and allowed the boys to decorate them with fabric markers and paint. We would then take pictures of Joy wearing the shirts and show them, or we ask the nurses to put her in one of the shirts if we were bringing the boys to visit.

TS: High-risk pregnancies and living with a high-risk pregnancy

JD: [Degl’s doctors told her that having a fourth child would be risky, but she yearned for another baby.] A pregnancy is considered high-risk when there are potential complications that could affect the mother, the baby, or both. These are always stressful! I would love to say I handled it well, but hindsight begs to differ! Looking back, I would suggest that both partners communicate their hopes and fears as they arise and that will help maintain sanity. Also, there are many different online communities and support groups in which you can find friends and confidants.

TS: Neonatal intensive care units

JD: Most people (luckily) do not really know what a NICU is. My advice to new NICU parents is: introduce yourself to the NICU social worker (unless they find you first), and they can inform you about the available support services. Then, I would talk to the other NICU parents who are going through something very similar and will most likely welcome your company. I made two very close friends in the NICU when our babies were there together.

TS: The life of a micro-preemie in the neonatal intensive care unit.

JD: Micro-preemies have a rough go of it. Most of their first few months are full of pain and stress. They are subjected to breathing tubes, IVs, numerous heel pricks and blood draws a day, daily X-rays, medications, and feeding problems. They should be listening to the muffled sounds of their mother’s voice for months to come yet they are exposed to pain, alarms, and bright lights. Only the toughest will go home.

Micro-preemies are not done with medical interventions once they go home. Many are sent home on oxygen, with trach tubes, and almost all will have daily doctor or nurse appointments for the first few months of being released from the NICU. The majority of micro-preemies will have interventions for a few years. Joy now has physical therapy once a week, speech therapy twice a week, and a teacher that comes to work with her twice a week. Many other micro-preemies have more services than Joy.

TS: How did you and your husband cope with everything, emotionally, psychologically, financially?

JD: Honestly, we are still dealing with it. At first, we fought a lot during my time on bed rest. Then things calmed down while Joy was in the NICU, because neither of us could focus on anything else, other than her health and taking care of our other children. After Joy’s first birthday, we really had time to reflect on all that we went through and we are still trying to move past it, both as a couple and individuals.

. . .

For parents, grandparents, aunts and uncles, and friends of preemie parents, “From Hope to Joy” is a truly inspirational and in-depth look into the author’s journey. Here’s an excerpt from chapter 23, Waking Up to New Challenges, www.fromhopetojoy.com.

The longer I was denied access to my daughter, the more depressed I became. Later that evening, John tried to show me pictures of our baby girl — I refused to look at them, and I refused to name her. She’s going to die. My positivity had flown out the window. I feared that naming her would somehow make me more attached to her, and I didn’t want to be attached to her in case she died before I saw her.

Ayla in the neonatal intensive care unit.

That night after everyone left, I couldn’t sleep. At 3 am, I was still wide awake — and crying. A few hours later, my doctor was back in the hospital and came to see me. I begged her to let me see my daughter.

“No. You don’t seem to understand that you’re in critical condition,” she admonished. She told me my job was to get better — and then I could see my daughter.

Sunday was Mother’s Day, and I didn’t even get to see my kids. John came and spent the afternoon and evening with me. We watched the finale of “Desperate Housewives” on TV and when John left, he promised to bring the boys on Monday.

When I was alone, Susan — the one nurse with whom I had bonded — came to my room. Susan was a surgical nurse, around my age, and a mom. “It’s Mother’s Day. I need to see my daughter,” I pleaded with her.

To my astonishment, Susan agreed. Somehow she got me in a wheelchair, pain pump, blood transfusion, and all. She wrapped me up, and down the hall we went, to the NICU. Susan told me I had five minutes, and then introduced me to Helen, a NICU nurse with an Irish brogue. Helen reminded me of my paternal grandmother, and I liked her instantly.

Our daughter was way back in the corner, in one of the two rooms in the front of the NICU, where the sickest babies are. There were tubes everywhere. I burst into tears that wouldn’t stop. She was so tiny: She weighed one pound, four ounces at birth, and was a tad over eleven inches long.

Helen carefully explained each of the bags and tubes. She wheeled me to a sink so I could wash my hands and then put my wheelchair right next to my daughter’s isolette.

I stuck my finger through the opening in the isolette, and my tiny daughter grabbed my finger.

After Susan wheeled me back to my room, I called John, and woke him out of a sound sleep. “We have to name her,” I said.

. . .

Another New Yorker, Jaime Hamm, shares her daughter Ayla’s micro-preemie baby story:

When I found out I was pregnant with a second daughter, I thought of the tea parties she could have with her sister. I thought of all the experiences I could share with them and what I could teach them, and what they could learn together. However, at 27 weeks and three days, I went into labor at a hospital I’d never heard of, with a doctor I’d never met, and delivered via C-section a one-pound, 14-ounce, 13-inch baby girl, Ayla Evelyn, who had less than a 10 percent chance of survival. A bacterial infection that began in my placenta and spread to my uterus forced Ayla to find a way out of what should’ve been the safest place in the world for her.

The next three-and-a-half months would require a strength that our family didn’t know we were capable of, as we navigated through our new life in the NICU. Small victories, such as when Ayla would gain 30 grams or when one of her many IVs were removed, were short-lived. It was a two-steps-forward and 10-steps-back kind of world. One minute I’m breast feeding her for the first time, the very next minute, her lung collapsed. There was no relief … only hopeful sadness that would occasionally make way for a bit of good news. The possible outcomes of having such a premature baby were severe. If she did survive, Ayla could suffer from cerebral palsy, brain damage … just pick your worst case scenario; according to statistics, it was a likelihood.

When their daughter Mila was 6 months old, Jaime and her husband Eric moved from their Upper West Side apartment to a home in Edgewater, NJ, a waterfront town right under the George Washington Bridge, less than three miles away. Hamm said it gave them a bit more space without leaving all the creature comforts of Manhattan, including her obstetrician and gynecologist, which she would need a mere two months later, when she found out she was pregnant again. She continued to see her doctor at her Upper West Side office and planned on delivering at St. Luke’s Roosevelt in Manhattan, where Mila was born.

My pregnancy with Ayla was [otherwise] unremarkable: all my blood work was fine; I was eating well; and [I was] getting exercise through long walks in Central Park with Mila. Since I was 34, I wasn’t high-risk, so there wasn’t any need for an amniocentesis — the only thing that would’ve detected the infection!

On the evening of March 13, 2012, I started having what felt like contractions. Surely, at six months I wasn’t going into labor — or so my husband and I told ourselves — so I took a warm bath and tried to relax. A couple hours later, the “contractions” had not subsided. We called my ob-gyn, Dr. Shulina, and she advised that we go to the local hospital and have them rule out contractions, just to be on the safe side. An hour later, it was confirmed. They were contractions, and I was in pre-term labor.

The emergency room advised that its hospital wasn’t equipped for a preemie of that size, and I would need to be transferred to another hospital that had a level III or level IV NICU. Dr. Shulina, who was in constant contact with the hospital in Edgewater, requested that I be brought to St. Luke’s Roosevelt immediately for treatment.

Anyone that has spent any time in New York City knows that with the bridges and tunnels, [traffic flow is unpredictable]. Either you fly on through, or you’re stuck in soul-crushing traffic. The physicians in Edgewater knew this, too, and refused to transfer me with the risk that I could go into labor while stuck in the Lincoln Tunnel. The decision was made to take me to Jersey City Medical Center. It was the closest hospital with a level IV NICU. I was frightened. I had no idea where I was going, who would be helping me, and I certainly didn’t know if my child would survive this — I was only 27 weeks!

Seventeen hours later, after a painful emergency C-section, and horrified gasps from an attending nurse upon seeing the condition of my uterus, Ayla was born. I saw her for only a moment before CPR was initiated and she was whisked away in a plastic box.

A doctor from the NICU met me in recovery to explain the situation. Ayla was sick, really sick, and her chances were less than 10 percent of surviving the night. In the words of the neonatologist, “we need her to fight.” And fight she did!

Ayla had lost three quarters of her blood supply fighting the infection my body had failed to protect her from. She survived six blood transfusions, three collapsed lungs, a grade-2 brain bleed, retinopathy, dangerously high bilirubin counts (jaundice), a slight opening in her kidney, and a heart murmur.

Ayla suffered through countless infections and infinite needle pricks to her tiny hands and feet. The suffering a mother goes through, watching helplessly as their baby fights with every labored breath in their small body to survive, is immeasurable. All I could do was use my hospital-grade breast pump, dutifully, every three hours, so that Ayla would always have fresh breast milk; read countless books and studies on prematurity; sit next to her incubator for hours at a time; and pray to God for a miracle — even if my lack of attendance in church didn’t quite warrant one, I prayed for one anyway.

On June 4, after Ayla’s brain bleed had begun to resolve, and it was safe enough to move her, Ayla was transferred to New York Presbyterian Hospital to have sight-saving eye surgery by renowned pediatric ophthalmologist Dr. Chan. The increase in oxygen delivered to Ayla after the collapse of her right lung, then her left, and then her right again, caused her right eye to hemorrhage. However, upon closer inspection, Dr. Chan told us that she wouldn’t need the surgery after all.

After months of setbacks and heartbreak, Ayla was out of the woods. In three more weeks, at a whopping five pounds, nine ounces, Ayla came home!

Today, Ayla is a happy, playful, walking, running 2-year-old, who loves Fisher Price Little People, her Pinkie Pie doll, and adores her big sister Mila. There are no more neonatologists, urologists, cardiologists, or ophthalmologists. She finished physical therapy and after four months of speech therapy, she is starting to talk!

My experience changed me forever. I learned so many things, namely, patience. I had to learn that it would take hours, days, weeks, months, sometimes YEARS to get answers to questions I had (and still have) about what her life would be like. I learned to trust the neonatologists, nurses, specialists, X-ray technicians, even the ambulance driver that transferred her to New York Presbyterian. I had to relinquish my most basic right as a mom to protect and care for my baby to strangers who had the medical expertise to help her. I’m glad I did; they saved her life.

I learned that I was stronger than I gave myself credit for, that you can never cry enough, and that a mother’s love for her child trumps all. I learned that miracles can and do happen, and I’ve learned to be thankful. I’m thankful for the incredible doctors at both Jersey City Medical Center and New York Presbyterian. I’m thankful for the nurses who held Ayla when I wasn’t there and thankful for the friends and family who rallied behind us. I’m thankful for the advances in modern science that in only the last few years have helped give these tiny angels a better chance at life.

Finally, I’m thankful that instead of holding Ayla’s hand through a small opening in an incubator, I get to hold it when we cross the street to go to the playground. In the end, it was Ayla who was the teacher, and I was the student. Through her, I learned how to be the best mom I can be — to two wonderful little ladies, who like to have tea parties.

From left, Sean (9), Shane (5), mom Jennifer, and Joy (2), and Jack (7) Degl on Mother’s Day 2014.