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Purple is the color of Prematurity Awareness

01 Nov

You might have noticed I changed the appearance here, to purple. The purple is in honor of Prematurity Awareness Month, a month of spreading the word of a cause that has hit too close to home.

I, technically, have two preemies, which means we have two babies born before 37 to 40 weeks. Tucker, our new baby, was born at 36 weeks. He made it that far with the help of some daily blood thinning injections that we learned I needed with Ollie, our older boy, who was born at 28 weeks. Nearly three years ago, we had a December baby, instead of a March baby. And those 12 weeks are crazy important to the development of a baby. It’s so much more than growing that needs to be done in those last three-ish months. That’s when a baby develops the ability to breathe, when suck, swallow and breathe while eating becomes instinct, gets important anti-bodies to help build his immune system.

When Ollie was born, his eyes were still fused closed, his body was as frail as an eggshell, his skin too sensitive to stroke. At 711 grams, he weighed about the weight of a Wi-Fi equipped iPad, and his lungs were too underdeveloped to work; he was on a ventilator for 10 days. His early expectations were primal: open your eyes, learn to breathe, grow. As we became NICU regulars, we learned the good and the bad, the positives and negatives, the things premature parents don’t want to hear and the things we waited for months to hear: his belly has residual feeds. He had to be “brought back” from an apnea spell. He needs to pee. We celebrated those “heavy” diapers, even if they were helped by diuretics. We were proud of his pooping, we rooted for an empty belly when it was time for another feeding through a tube in his nose. The big apnea spells (where he’d forget to breathe and drop his heartrate to scary levels) brought tears along with the dings of his monitors. Finally we heard the good news: you can bring your car seat in for his Car Seat Challenge, I hope your crib is set up, and finally the “BYE OLLIE! We’ll miss you!” written on his whiteboard, where nurses wrote notes and updates.

A week after he was born, I finally held my Ollie, a mere 12 inches long, with his ventilator tubes taped to my shoulder, snuggled in my shirt to keep him warm and give him skin-to-skin contact in Kangaroo Care, often the only tangible help a mother can provide in this situation.

Kangaroo care, shortly after graduating off ventilator

He calmed, listening to my heartbeat, listening to my breathing, hearing my voice, the sounds he *should* have still been hearing at all times, instead of the whirrr of a ventilator, the beep of monitors, the sounds of life on the outside. His isolette had too much equipment nearby; a pole of medications on pumps that were delivered through his belly button IV, tubes, wires, and the oscillating ventilator that sounds a lot like the air compressor Matty has in the garage. It was overwhelming; I put myself in survival mode, trying my best to set aside worries that he might not make it, arranging my life around his care times, so I could be present while his team did its hands-on checks, its status updates, changed his diaper and maybe hold him, if he was stable enough.

As he reached the milestones that aren’t found in a typical baby book, we gained more confidence that we would be taking him home. He breathed without a ventilator 10 days after his birth, but needed supplemental oxygen for eight months altogether. He took his first dose of pumped breastmilk and opened his eyes all within the two days surrounding his breathing. He gained weight, his skin grew less sensitive to touch and I could stroke his head to comfort him. We gave him baths, his arm wrapped in a sterile glove to protect his IV lines, his head the size of a tennis ball. In his nose was an oxygen tube, down his throat was a feeding tube, but underneath all the wires, the tubes, the ruddy skin of jaundice, he was Our Ollie. And Our Ollie was making it. He was fighting through the bad news and pulling out his feeding tubes; he was fighting with all the flair and stubbornness that’s still part of his personality.

We took him home just three days after his due date, after 84 days, with an oxygen tank and apnea monitor crowding the back seat. He weighed five pounds. All of our Ollie souvenirs came with us, the tiny yellow hat that he wore the first time I held him, finally laughably too small, some doll-sized diapers and blood pressure cuff, his special cowboy blanket that covered his isolette to block out the light and let him rest. But the final morale of the story is: we came home.

This is OUR story. For the most part, it’s generally uneventful compared to a lot of other babies born at his gestational age at his gestational size. No emergency surgeries, no middle of the night phone calls, no infections. But the problem is: 1 in 8 babies are born preterm, so worldwide, according to the March of Dimes, over 13 million babies are born too early every year.  And the United States has earned a C in worldwide comparisons of premature baby care and success rates. The good news here is that preterm birth rates improved in almost every state between 2006 and 2009, and in several states the change was more than 10 percent, according to research done by the March of Dimes. It’s hard to predict who’s baby will be full-term, what the repercussions might be for a preemie, micro or late term. And women who do everything right while pregnant can – and do – still experience pre-term labor, fetal distress, infections and a host of other reasons (ahem: clotting disorders) that would require a baby to be induced or c-sectioned out before his 40 weeks are up.

Tucker’s birth at 36 weeks was uneventful, delightfully uneventful and for that I am forever thankful. Our take-home baby, he spent 0 minutes in the NICU. He breathed beautifully, cried right out of the gate, ate like a champ; he essentially restored my faith in pregnancy, childbirth and has showed me with clarity that babies have 40 weeks to gestate for a reason. Even though he didn’t quite make it to that magical 37 to 40 weeks, his lungs were fully developed, his muscles have cooperated with each other, he’s right on track with babies his age. Probably not strangely, Tucker’s ease has given me new insight into Ollie’s delays. Not being around kids very much growing up, I wasn’t all that knowledgeable about how children develop. Comparing the two experiences is like apples v oranges. To see Tucker do things with ease at 11 months that Ollie struggled with for much, much longer, has helped me realize just how far Ollie has come. And how differently I would have handled the delays if I knew any better.

Ollie’s birth at 28 weeks was directly related to a clotting issue I have; Tucker’s water broke on its own, because of the meds I was on to keep him cooking longer. I didn’t drink when pregnant, or stand on my feet all day, or take illicit drugs or fall into any other special categories. I was just a regular old run-of-the-mill Plain Jane whose clotting disorder went undiagnosed until something went awry.

It really can happen to anyone, and it really does knock you off your block if it does.

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2 Comments

Posted by on November 1, 2011 in Uncategorized

 

2 responses to “Purple is the color of Prematurity Awareness

  1. rubysrandommama

    November 2, 2011 at 9:25 am

    What an inspiring story! Thank you for sharing. Ollie is precious 🙂

     
  2. Nicole

    November 2, 2011 at 4:13 pm

    Lisa- I am crying as I read this! Thanks for putting your story out there for so many other families. I recall every moment of being in the NICU you with you guys and our son Zachary, sharing our experiences almost day to day. Ollie and Zachary are true miracles!

     

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