A Mom's NICU Experience

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Guest Post by Holly Ng

The Neonatal Intensive Care Unit (NICU) is a scary word to most people. It is a place where sick newborns fight for their lives and desperate parents pray for their baby to get better. I’m a new mom who gave birth to a preemie who was not breathing at birth. This is my story surviving the NICU.

A Dramatic Entrance to the World
In the wee hours of my 35th week of pregnancy, a backache woke me up from dreamland. I didn't give it a second thought because I’d been having backache my entire 3rd trimester. I was eager to fall back to sleep after a restless day at work. Little did I know, within an hour that minor ache would turn into an agonizing pain radiating through my entire lower body. I was about to give birth! I urged my husband to drive us to the hospital and I could literally feel my baby crowning in the car.

I screamed and yelled on the way to the hospital, thinking that this was happening much too soon. My son was only at 35 weeks gestation; he wasn't ready to see the world yet. Still in my nightgown, Chunbao came out seconds after I hopped onto the labor bed. Without my OBGYN there, without epidural or any IV lines, I delivered my baby while my husband was still at the valet. 

All I heard was “crash cart! crash cart! The baby is small. The baby is not breathing.” I was so confused. Where is my doctor? Did I just deliver my baby? How come I didn’t hear him cry? When I came to, my husband told me that Chunbao wasn’t breathing when he came out. The doctors resuscitated my 4 pounder for 6 minutes and he needed to be transferred to another hospital to receive specialized treatment.

Clinging to Life
Motherly instinct told me that I must recover quickly so I could care for my sick baby. So, I stayed in my delivery hospital to recover for a full 3 days. My husband, who traveled to the Children’s hospital with Chunbao, was feeding me messages about what was happening with our baby. My dream of holding him skin to skin shattered. Instead, I had to rely on pictures to get me through those first few days.

The first 3 days of Chunbao's life were critical in determining whether he'd live - and if he did, whether he would be disabled for the rest of his life. Since he lacked oxygen in the brain, Chunbao was put under a cooling process to preserve further brain cell damage. He was monitored in case he suffered a stroke, intubated, and had IV lines throughout his body for medication and nutrition delivery. He was clearly suffering, hanging to life by a thread. I was in despair, but I converted my sadness to strength. I ate healthfully, went home to sleep in my own bed, and asked the doctors plenty of questions. I was glad I didn’t Google all the medical terms I’ve encountered or I might have gone insane!

Getting Better
During the next 44 days, Chunbao would slowly be removed from each life support system as he progressed towards recovery. We were ecstatic when doctors relieved him of intubation after a week. He no longer needed blood pressure and acidosis medications after two weeks. He started taking my breast milk through a tube from his mouth rather than artificial nutrition delivered intravenously into his belly button. Finally, we held him for the very first time after 9 days!

The first few weeks in the NICU with our son was, without a doubt, the hardest time in my life. In order to give my sick baby the best nutrients, I religiously pumped every 2.5 hours, day and night. We never missed an opportunity to talk to each and every specialist treating our son so that we could better educate ourselves about his condition. Throughout this time, I dealt with the intense worry that he would be mentally and physically disabled, yet there was really nothing I could do to change that possibility. We could only pray and simply be there for our baby.

Getting Closer to Going Home
Just when we thought our son was getting better, we found out he had hip dysplasia. An ultrasound revealed that his right hip joint was malformed. He was then put into a Pavlik harness 24 hours for the next 6 weeks. This harness was basically a brace for the lower body to keep the hip joints secure. This made holding my poor little guy even more difficult. We were sad that he needed to wear such a restricting bodysuit but we knew it was the best thing for him. Just when we were beginning to learn about his hip issues, he got a urinary tract infection. The doctor thought that he had a congenital urinary tract problem so did a fluorescent imagining to rule it out. Luckily a week of antibiotics cleared away his infection.

As newborns develop physical strength from being held and carried, our bedridden son is - and will continue to be delayed - in his developmental milestones. We received daily visits from the physical therapist and learned many ways to help improve Chunbao's low muscle tone. We massaged, sang, read and “played” with him as best we could. In addition to physical therapy, we worked with the feeding expert to train Chunbao on the basics of bottle feeding. Since he was intubated and had never touched a nipple, learning how to eat was an uphill battle. Being able to feed by bottle was a requisite for going home so we were desperate for him to learn this critical new skill. At first, he fell asleep during feeds because he was sick and weak. Eating for any NICU baby is like running a marathon. But as Chunbao got stronger each day, he was able to feed longer without dosing off. When he consistently finished his bottle every feed, we were prepared to take him home.

Just when we thought going home was imminent, another ultrasound revealed that Chunbao had a blood clot in his inferior vena cava, the largest vein in the body! It appears to be quite common for NICU babies to develop blood clot from IV lines because of our body’s natural response to foreign objects in the veins. The treatment plan was to inject him blood thinner twice a day for at least 3 months, which means poking a needle in my baby twice a day for that period of time.

Finally Home
Chunbao has persevered through a restricting harness, a UTI, and endured two injections daily. We thought all the hurdles were finally cleared and that we would be going home soon. Alas, a sleep study revealed that our son had sleep apnea, meaning that he intermittently stops breathing when he’s asleep. It's a common condition for preemies, which meant that he’d be sent home on oxygen. I almost broke down when I heard this because wearing the oxygen tube 24 hours a day and carrying the oxygen tank with us wherever we went seemed like a total hit on his quality of life. But at the end of the day, I’m grateful that it could improve my son's health. 

Although we finally took Chunbao home after 44 days of NICU residency, we still often go back to the hospital for his follow up appointments with specialists. Chunbao also has therapy sessions 3 times a week with a physical therapist, occupational therapist, and child development specialist. These are state funded early intervention supports for infants with high-risk developmental issues. I’ve written about it in my article on bringing a baby home from the NICU. Also, if you’re interested in learning about tips on surviving the NICU, you can read it here.

Ten months after his discharge from the hospital, Chunbao is cured of hip dysplasia, no longer needs blood thinner injections, and is completely off oxygen. Despite some muscle weakness, he’s all caught up in his developmental milestones! Although he had a rough start, we never baby or spoil him. We set realistic goals every week and helped him accomplish them. We spent hours each day playing with him and never missed a doctors appointment. Through this traumatic experience, Chunbao showed us how resilient babies are and how NICU babies are mighty fighters.

Giving Back
We felt extremely grateful for the amazing treatment our son received from the Children’s Hospital of Los Angeles. They even have a Literally Healing program where every hospitalized kid gets a free book daily. We’ve also received lots of support and resources from March of Dimes, a non-profit organization that leads the fight for the health of all moms and babies. They have helped millions of babies survive and thrive, including mine. To help support their cause, you can donate here.

Holly Ng is a working mom to a preemie baby boy. She is enthusiastic about child development and making healthy recipes for her underweight baby. You can visit her website or say hi on Instagram @spirited.sprout.