My NICU Journey, a Baby’s Perspective

Not all superheroes wear capes. Not all superheroes can fly. Not all superheroes can run super-fast, shoot lasers from their eyes, or lift heavy things.

But all superheroes are brave and never stop trying.

I may be little and started my life even littler, but my daddy, mommy, and nurses say I’m a superhero.

Here is my story.

I was born 11 weeks early, on November 17, 2019. I was only 2.6 lbs! I didn’t choose to be born on World Prematurity Day. But I figured if I was going to make my first appearance on this planet a little early, why not do it in a way that helps everyone know more about people like me?

Around 15 million of us are born early. That’s a lot of people who need to do a bit of extra fighting early on to catch up and grow as strong as our peers who are born closer to 40 weeks.

Why was I born early, you ask? My mommy had a disease called preeclampsia. Her blood pressure got very high. The doctors told her that it would be dangerous to let me stay inside of her for much longer.

My mommy worked very hard to give me more time before coming outside. But after a little over a week, it was time for me to say hello to the world.

Twice before I was born, the doctors gave mommy a special steroid shot to help my lungs grow stronger. But I guess it didn’t work as well as they had hoped. My lungs were very weak when I was born, and I had a lot of trouble breathing.

My nurses at my new NICU home gave me something called Bubble CPAP to help me breathe easier. It wasn’t very comfortable on my nose, and even with it, my oxygen dipped frequently. My new lungs just got tired so easily. This caused lots of alarms to go off. I think this scared my daddy. I don’t think he ever got used to it, but I did. The sound of beeping was a normal part of my every day. If it wasn’t me beeping, it was one of my friends nearby.

It took mommy about two weeks to fully recover from the preeclampsia. She and daddy visited me a lot during this time. I got to meet lots of new friends at the hospital too. My NICU nurses would take care of me, change me, make sure I was getting fed, and every so often, they gave me a bath. I very much enjoyed bath time, it was very relaxing, and gave me a nice change of pace from my usual home inside a warming chamber. As with breathing, premies like me also have a lot of trouble keeping our body temperatures stable.

I got a little jealous sometimes when daddy would visit and talk about another baby, called Yoda. Apparently, he thought this baby Yoda was oh so cute. That Yoda had nothing on me. I was cuter, and I could use the force just like Yoda.

Daddy was quite impressed.

I had a special feeding tube for a very long time. It was nice because my lungs could rest while the tube made sure I had mommy’s milk every few hours. But I did not enjoy how it was always in the way when mommy and daddy came to hold me.

Sometimes, my tummy would get a bit bloated, and I would get very uncomfortable. My nurses would let the doctor know, and they would give me medicine to make sure it didn’t get too bloated. The medicines were called diuretics and helped me pee out some of the extra fluids that filled my belly and my body. Those fluids pushed on my lungs. When that happened, it was harder for me to breathe, and my monitors would beep more, making poor Daddy’s face go white.

I was very excited to meet Santa for the first time at Christmas. I also got to meet my big sister and brother which was very exciting! We had a nice Christmas at the NICU, and my nurses hung up decorations to make me feel special. I was very happy. In fact, a few days later, I was able to come off my CPAP for the first time! My lungs were getting stronger!

But after 24 hours, I grew ever so tired, and my oxygen monitor started beeping a lot. I was having too much trouble breathing. I heard my nurses talking to the doctor. I had been born with something called a PDA. That stands for patent ductus arteriosus. It’s a valve in my heart that’s supposed to close, but with premies like me, sometimes it doesn’t. Big ones can cause us to have trouble with our oxygen. My PDA was huge. No medicine my doctors gave me would close it.

My nurses and doctor gave my mommy and daddy the news that I might need surgery to close the PDA. I would probably have to go to a bigger hospital for the surgery because it was a type of heart surgery. Only Level 4 NICUs could do that kind of surgery, and I was at a Level 3 NICU.

The doctors said surgery may be necessary to help me breathe better so I could eventually get off my CPAP. They were nervous because I was needing my CPAP longer than I was supposed to.

I wasn’t scared, but I think daddy was. When he held me that day, he cried and cried. My nurses tried to make him feel better, but I think it was my smile that finally helped him out. He kept saying that I was probably just having gas, but I think he knows it was a real smile. He was right.

A few days later, the doctors decided to try a new medicine to see if it would help close my PDA. It was a long shot, they said, and had at best a 40% chance of working.

Never tell me the odds.

After a few days of medicine, a special nurse came in with a big machine called an echocardiogram. She kept staring at it with amazement. My PDA had gone from huge to tiny!

I was so proud of myself and thankful for the medicine, and the smart doctors and nurses who had decided to give it a try. From that point forward, my PDA would not be a major issue, and I did not need any surgery.

Daddy was so happy! I think he even cried again.

My next step was to learn to eat from a bottle. It was very hard. Though I was doing better, my lungs were still weak and would continue to be fragile for up to 2 years. But I kept practicing and practicing. Sometimes, my alarm would beep, because I’d try too hard and my oxygen would get low. But my nurses would help me get back on track.

It took more than three months, 113 days to be exact, but on March 9th, 2020, I finally got to come home!

I’m doing great, and am going to be quarantined with my family for quite some time to stay safe from all the viruses out there. But we are doing good. I am eating like a champ, and gaining weight.

Soon I’ll be big and strong enough to play with my brother and sister, and eventually, get to meet all my cousins. I can’t wait!

I hope you enjoyed my story, and when you look around at all the people of this world, remember, lots of us started off little. But we are strong, we are fighters, we are superheroes.

Thank you to all the remarkable staff at the Cleveland Clinic Fairview Hospital whose dedication to me and my family got us through a very challenging time. You are superheroes too :)