A Preemie's Letter to Mom and Dad

Dear Mom and Dad,

I made it! Coming out early wasn’t easy. Just ask LaBron James how hard coming out early can be. Celebrating my first birthday with you is a real accomplishment for an ex-28-week preemie. I worked hard to get this far and I’m proud of my accomplishments and appreciate your support. Hopefully things get easier now.

I didn’t like spending time in the neonatal intensive care nursery with a breathing tube in my airway. I think I understood what the neonatologist told you about my lungs, which have tiny balloons called alveoli at the end of small airway tubes called bronchioles. If I hadn’t been born so early I would have had time to make enough surfactant to coat the inner surface of the balloons so that they would not collapse when I breathed. I needed the breathing tube and ventilator to keep those balloons open so the oxygen in the air would be transferred to my red blood cells.

I liked having my own special room in the nursery called an incubator. I can’t believe what you paid for that place. It was tiny and very noisy. I felt claustrophobic and someone always seemed to be bothering or sticking me.

I know that babies eat, sleep, and poop; and I had problems with all three. My stomach was small and the breast milk I drank had a hard time passing out of my stomach into the small intestine. Also, the valve between my esophagus and stomach didn’t work well so I vomited a lot after feeding because my tummy was so full. It was frustrating to lose all those calories that I needed to grow. The doctors called my vomiting gastro-esophageal reflux and gave me an antacid medicine. I think they were wrong. Have you seen the TV commercial of John Elway, a football player, complaining about acid reflux? How could I have had what he has?

You got to know some of the other parents in the nursery pretty well. Was it hard when some of the other preemies developed problems? I knew something was wrong with John when the nurse told the doctor he had blood in his stool. They called it necrotizing enterocolitis; an infection of his intestines. They stopped feeding him and gave him antibiotics. I heard that he might later develop a narrowing of his intestine so his parents and pediatrician have to be aware of problems like vomiting or constipation. Then my friend, Maria, who was even more premature than I was, had a seizure and a brain scan showed she had an intracranial hemorrhage. That was really difficult because it is hard to know how much brain damage Maria will have and whether she will develop cerebral palsy.

Except for needing oxygen at home, I think I did very well. It felt great to get home with both of you. I really liked breastfeeding at home, and not just from a bottle with a preemie nipple. Did you know that breast milk is best for preemies? It can mean better growth, fewer infections, and maybe higher IQ points. Mom, you seemed to be much more comfortable, confident and calm at home and Dad was able to help a lot more; including getting me for my night time feeds and changing my diapers.

You were careful about not taking me out in crowds, not letting people with colds hold me, and having everyone that touched me wash their hands. Thanks for not smoking. Breathing in second hand smoke is a real bummer for us preemies. Did you know that it increases the risk of sudden infant death syndrome (SIDS) and makes preemies more susceptible to respiratory infections and asthma?

I can’t say that I enjoyed my visits to the pediatrician for preventive care, especially all those vaccinations. However, I’m glad I didn’t get influenza or any of the other vaccine preventable infections. The pediatrician checked my blood count, my vision and hearing, and my growth and development. She also gave us some really good advice about starting solids, how to use the car seat and how to sleep on my back. She did notice that I had a “lazy eye” and referred us to the ophthalmologist, who checked me for retinopathy of prematurity, or damage to my retina, from the oxygen and ventilator. I had minor changes, nothing to worry about. The ophthalmologist felt my lazy eye would get stronger, and it did.

I did get sick a lot with colds and ear infections during this first year. I think I caught the colds at my child care. The pediatrician said it was because I missed out on getting a full supply of Mom’s antibodies and that I was more susceptible to getting sick the first time I became infected. I was worried about getting a respiratory syncytial virus (RSV) lower respiratory tract infection because my airways were still very small and vulnerable. Our pediatrician told us that the danger signs for respiratory infections are fast breathing or difficulty breathing with chest indrawing. Sometimes RSV infections cause a preemie to stop breathing and turn blue. My friend, Ben, another preemie who is in my play group, developed an RSV infection and was hospitalized for a week and needed home oxygen for another 6 weeks. My pediatrician said that I shouldn’t go to

childcare during RSV season. I also got a medicine, Synagis®, which prevents preemies from getting severe RSV infections. I don’t know if Ben got this medicine.

How are you guys doing with each other? There is a lot of stress worrying about and caring for an ex-28-week preemie. You need to have some fun and spend some time together without me around. Don’t worry. I can handle a baby sitter. Grandmother would be great. A little crying is healthy and normal. I want you to treat me like a normal kid, not a sick kid.

Ok, I made it to my first birthday but I don’t know yet if I will become what you want me to become - just a normal kid or a star athlete or a merit finalist. I may have learning problems or be clumsy but it really doesn’t matter because if you both love me and have confidence in yourselves and encourage me, I’ll do just fine and you will be proud of me. By the way, how about having a magician for my second birthday. My friends would really dig the pulling a rabbit out of a hat trick.

Love,
Your healthy, happy baby

PreemieCare
P.O. Box 306
(631) 859-1110
East Islip, NY 11730
info@preemiecare.org