10 things I wish I didn't know about prematurity

My oldest son who was born extremely prematurely recently celebrated his 17th birthday, and it's fall. Fall always makes me think about the NICU, as we spent 117 days there from August 23 to the week before Christmas in 1996. (You can read his birth story here.) So when I saw the Monday Listicle topic for today was "10 things I shouldn't know," I thought about...

10 things I wish I didn't know about prematurity

Me on a business trip to Alaska, a week before Chris was born--
I was clueless my life was about to change!

1. In the U.S., 12.2% of babies are born prematurely, and women who have experienced infertility are more at risk for premature birth, even with singletons. (I think this connection has been discovered since Christopher was born.) I was not considered high risk at all, although I had experienced infertility--and continued to with my attempts to get pregnant again (I had four miscarriages and had to use Clomid).

2. Premature labor often feels like really strong abdominal cramps (like extra-strong menstrual cramps) and severe back pain. I wish I had known this when I was pregnant, because I was in premature labor for a couple of days. I try not to blame myself for not calling the doctor earlier and wonder how things might have turned out differently--could they have stopped the labor? We both thought that I had severe constipation. We had no clue, and we had not been informed about what premature labor was like. I was only 24 weeks along--it was too early for me to go into labor, or so I thought.

Baby Christopher

3. Male preemies fare worse than females. At 23-24 gestational weeks, 60% of boys die vs. 38% of girls. They told us Chris had a 50% chance of survival, but it was probably even lower than that.

4. Babies of color fare better than white babies, which means that female babies of color have the best survival chances. University of Florida researchers found that black baby girls who weighed 2.2 pounds or less are more than twice as likely to survive than white baby boys at the same weight. This says only one thing to me: divine justice! (As they have the hardest lot in life)

Perspective--that's my hand, way bigger than his head

5. Many micropreemies (younger than 26 weeks and weighing less than 1 lb, 12 oz) have intraventricular hemorrhages, or brain bleeds, and about 25 percent of them result in serious, long-lasting effects such as cerebral palsy. Chris was very lucky to have no brain bleed, although he had many other challenges.

Little Chris with glasses

6. Early prematurity can cause blindness or vision problems because of a disease called Retinopathy of Prematurity (ROP), which is what caused Stevie Wonder's blindness. Chris had weekly eye exams in the NICU and for several months after he went home--after observing the first eye exam, I could not watch any more. The pediatric ophthalmologist wrenches apart the eyelid and keeps it open with forceps, while he or she peers in at the eye and pokes and prods. It's torture but necessary so they arrest the fast development of the ROP. Fortunately Chris' ROP resolved before it got too bad, but he's been wearing glasses since he was three years old. This is an excellent explanation of ROP, written by a mom who recently had a micropreemie much more recently than me.

In the beginning, Chris was under plastic wrap to keep
 his body warm--
he didn't move to a covered isolette
until he was much more stable

Doing kangaroo care

7. Much of neonatology is guesswork and careful calculation, and some of the drugs they use on preemies have not been adequately tested on babies so small. Chris was on a number of medical studies, and medications, that were later found out to be harmful...such as steroids after birth or a drug called propulsid (now banned). The most serious of all was a drug called Captopril to control his high blood pressure, and it caused a renal artery thrombosis, which in turn resulted in low flow to the brain and cerebral edema (similar to a stroke). He nearly died, and the doctor told us that he would most likely have severe brain damage...and we should consider how we felt about continuing life support. Apparently he was not the only premature baby who experienced this reaction. Many NICU graduate parents, including Helen Harrison, who wrote the first major book about premature babies, are advocating for better parental education and informed consent, which so many of us have not had.

8. Five of the hardest things I've ever had to learn how to do:

• Leave the hospital without my baby with me, not knowing when he'd be able to come home
• Allow them to operate on my baby when he was not yet 2 pounds (heart surgery)
• Not be able to hold my precious firstborn until he was a month old, and after that, alternate each day with my husband...we both wanted to do kangaroo care (holding your baby skin to skin, which originated in Colombia and greatly helps preemies), but we had to take turns until he was healthier
• Think about quality of life and how long to prolong life support if he had been brain damaged
• Support and mourn with other parents whose babies died in the unit while we were there and afterward...one of them was a much older, healthier preemie (34 weeks) who went home and contracted respiratory synctitial virus (RSV), which can be fatal for preemies  

Our freezer stocked with breast milk

9. Breast milk is even better for preemies than it is for full-term babies. I began breastfeeding Chris, but because of his severe reflux, he would often vomit during or after breastfeeding...making it not a very pleasant experience for either of us. So instead I breast pumped milk for him exclusively for 15 months...until we traveled to the United Kingdom, and my breast pump broke. I had to go cold turkey (OUCH!) and put him on formula. Within a few weeks, he had contracted RSV and pneumonia and had to be admitted to the hospital for a week. All of our NICU friends told us how lucky we were that this was the first time he'd been back to the hospital. I chalk that all up to breast milk, keeping him away from sick people, and requiring people to wash their hands when they were around him.

Santa visiting Chris in the hospital
 when he had RSV, 1997

10. Hope, prayer, and supportive family and friends can sustain us and help carry us forward in any crisis. So many people have asked me how I survived 117 days in the NICU and having my baby be born so tiny and sick. And my answer is that you never know what you can survive until you endure it. You just get through one day at a time.

We had an amazing spiritual community who had faith in Chris' survival and held us in prayer and positive thoughts. They ministered to us through meals, cards, and phone calls. Another close family friend was there immediately when Chris was born and took Mike for breakfast while I was in surgery (he wasn't able to be with me, as it was an emergency c-section with general anesthetic). Our amazing pastor had just arrived to begin her call at our church, and I met her for the first time in the NICU, praying over Christopher. That forged a lifetime connection of love and gratefulness.

Chris' baptism, which included many of his NICU nurses and chaplain

Friends and my work colleagues also provided support. We both have close relationships with our family, and my cousin Tim gave me one of the most inspiring messages the day Chris was born--he told me that our family is ornery, so Chris would be just fine!

We are also very lucky to have a strong marriage with great communication, in addition to similar beliefs and views about the world and life. The NICU experience strengthened our marriage and helped us grow closer six years into our marriage.

I clung to my hopes as much as I could, even in the midst of the most dire news, and I imagined Chris as a healthy toddler, running along the beach. When that finally happened, I was awash with joy.

Beach vision come true!

Fast forward later, and now he is 17...a junior in high school, a sweet teenager who is obsessed with music, bright and gets good grades, and grateful to be alive and part of our family.

Sharing music with my wonder boy, August 2013

To read what others know but shouldn't, visit Stasha's The Good Life.