The preemie that died and came back to live

A mom's NICU experience

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a mom's NICU experience

NICU, Neonatal Intensive Care Unit, 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 that was not breathing at birth, and 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’ve been having backache my entire third trimester. I was eager to fall back to sleep from a restless day at work.  

Little did I know, within an hour that minor ache turned into an agonizing pain through my entire lower body.

I was about to give birth at only 35 weeks pregnant!

I urged my husband to drive us to the hospital and I could literally feel my baby’s head crowning in the car!

I screamed and yelled on the way to the hospital thinking that this was way too soon. My son was only 35 weeks in my womb and he’s not ready to see the world yet.  

Still dressed in my nightgown, my son came out seconds after I hopped onto the labor bed.

Without my ob-gyn doctor there, without epidural, or any IV lines I delivered my baby!

My husband was still at the valet and here came our son. All I heard in the labor and delivery room 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 be, my husband told me that our son wasn’t breathing when he came out. The doctors resuscitated my 4 pounders for 6 minutes and he needed to be transferred to the Children’s Hospital to receive specialized treatment.

Clinging on to life

Within an hour after birth, I was wheelchaired to the NICU at my delivery hospital. There were about 20 medical staffs surrounding my baby, who was lying lifeless in a little box. It took about 30 minutes for the staff to prepare him to be transported to the Children’s Hospital.

Mother instinct told me that I must recover quickly so I can care for my sick baby. So, I stayed in my delivery hospital to recover for a full 3 days. My husband, who was in the ambulance with our son to the Children’s Hospital, was feeding me messages on what’s going on with our baby.  My dream of holding my baby skin to skin busted in bubbles and all I could rely on were pictures of my baby from my husband.

Receiving treatments at the NICU

My son’s first 3 days of life determined whether he live or die, or to a lesser extent, whether he will be disabled for the rest of his life.

Since he lacked oxygen in the brain, he was put under a cooling process to preserve further brain cell damage. He was monitored for stroke, intubated, and had IV lines throughout his body for medication and nutrition delivery.

He was clearly in agony hanging on to a thread of life.

I was in despair, but I converted my sadness into strength. I ate healthily, went home to sleep in my own bed, and asked the doctors questions. I was glad I didn’t google all the medical terms I’ve encountered or else I would’ve gone insane!

Getting better

In the next 44 days, my son would slowly be removed from each life support system and 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 at the NICU with our son was the hardest time in my life. In order to give my sick baby the best nutrients, I religiously pumped breastmilk every 2.5 hours including waking up in the middle of the night.

We never missed any opportunities talking to every specialist treating our son so that we can better educate ourselves on our son’s condition. Also, there was always a doubt in my heart that he will be mentally and physically disabled and there was really nothing I could do to change that possibility.  

At this point, we could only pray and just be there for our baby.

Getting closer to going home

Just when we thought he was getting better, we found out our son had hip dysplasia. The 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 they 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 be delayed in his developmental milestones. We got daily visits from the physical therapist and learned many ways to help with our son’s low muscle tone. We massaged, sang, read, and “played” with him to the best of our abilities.

Besides physical therapy, we also worked with the feeding expert to train our son on the basics of bottle feeding.  Since he was intubated and never touched a nipple, learning how to feed by mouth was an uphill battle. Being able to feed by the bottle was a prerequisite for going home so we were desperate for him to learn to feed by mouth.

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 my son 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.

When we thought going home was imminent, another ultrasound revealed that my son 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 clots 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. This means poking a needle in my baby twice a day for 3 months!

Finally home

Ok so what now…he persevered, wore a restricting harness, got 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 releveled that our son had sleep apnea! He intermittently stops breathing when he’s asleep, a common condition for preemies, and this means that he’ll be going 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 wherever we go will be a total hit on his quality of life. But at the end of the day, I’m grateful that my son is ok and will become healthy at some point in his life.

Although we finally took our preemie home after 44 days of NICU residency, we still often go back to the hospital for his follow up appointments with specialists. My son also had home therapy sessions 3 times a week with a physical therapist, occupational therapist, and child development specialist.

Preemies are resilient fighters

Ten months after his discharge from the hospital, my son is cured of hip dysplasia, no longer needs blood thinner injections, and completely off oxygen. Despite some muscle weakness, he’s all caught up in his developmental milestones! Although he had a rough start in life, we never 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 doctor’s appointment. Through this traumatic experience, my son showed us how resilient babies are and how NICU babies are mighty fighters!

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