Home » Prematurity » I don’t know why

I don’t know why

In two days, our family will walk in our twelfth March for Babies with the March of Dimes. In the lead-up to the event, we often are asked to do interviews and presentations, so I’m telling  Big Man’s story a lot. People tend to want to know how he’s doing now.  They want a happy ending, and I’m happy to give it to them, but I always have to clarify that most micro-preemies of his gestation do NOT have the outcome he’s had. I have to keep it real.

His story is not the norm. It is unheard of for a 26 weeker to spend just 36 hours on the ventilator before graduating to CPAP. It is unheard of for a 26 weeker to not have face at least one of the following: PDA ligation (surgery to close the  ductus arteriosus), retinopathy of prematurity, hearing loss, cerebral palsy, feeding issues, sensory issues, developmental issues. He did have a brain bleed, which is super common for preemies. His was a Grade I/II, which resolved on its own. He did have a staph infection, from which he quickly recovered. He did develop reactive airway disease, which became full-blown asthma. He does have ADHD. But basically, he came away from his extremely early birth unscathed.

Trust me when I say I know how rare that is. When he was in second grade, we saw a pediatric opthamologist. In taking his medical history, the doctor looked at me and said, “You do realize that only 2 or 3 out of 100 26-weekers will turn out like your son?” I knew my son was a rarity, but I had no idea the enormity of his particular outcome.

What was it….luck? A miracle? The doctors, nurses, NICU, ante-partum care we’d received? Was it that I had three rounds of steroid shots in the 16 days between beginning to bleed and the day of his birth? Was it the continual magnesium sulfate I was given in those same sixteen days? I’m not in any way complaining. I can’t imagine what our family, what our lives would look like had he not had this outcome. But sometimes I wonder why we’ve been so blessed, when so many other families suffer so much, when too many families lose their precious babies to the complications that are just part of prematurity.

I don’t know why he’s come away from his premature birth without any of those things he could have, probably should have faced. I try to make that very clear when we’re sharing his story, because I need people to understand while he’s completely normal and healthy, that isn’t the norm, that premature birth is truly life-threatening, and life-long, that most preemies don’t turn out like him.

Sometimes I wonder if he’s meant to do amazing things. But then other times, most of the time, I just think the fact he is here, how he is, and who he is, is exactly what’s meant. That’s pretty amazing as it is.

7 thoughts on “I don’t know why

  1. This is incredible and thank you for you sharing. I didn’t blog about this but my water broke early and when I went to the hospital I found out that I had preeclampsia. I had just been the the doctor the day before and everything was fine and I had only gained 13 pounds Everyone was shocked. Going through the scary bout of magnesium and worrying if everything would be okay and questioning if I had done something still concerns me. I want to have another someday but worry that it might happen again and what if it happens earlier. I have another friend who had hers at 26 weeks as well. Watching her little girl progress and become such a lovely little lady and reading your story shows there is promise and wonderful things in this world. And thank goodness for NICU’s. You are an inspiration (and 16 days of magnesium?!)

    • What a terrifying experience for you. Preeclampsia is no joke. I will tell you, I’ve had a few friends go on to have healthy, no preeclampsia pregnancies following their NICU babies.
      Yes – 16 straight days of magnesium sulfate. It. Was. Awful. But it was worth it.

  2. I was in a relationship with my ex for 18 years and her son (6 weeks prem) had Tourette’s, ADHD, OCD and a couple of other very challenging behavioural problems, so it’s good to know you dodged a bullet, so to speak, in that respect. Sounds like Big Man is very lucky to have such a great family around him.

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