Thursday, August 23, 2012

My little one-pound, six-ounce baby is sixteen!

Sixteen years ago today was one of the most terrifying days of my life. Our oldest son, Christopher, was born extremely prematurely at just 24 weeks gestation. He weighed one pound, six ounces and was just 11 inches long. And suddenly we were launched into the crazy world of the neonatal intensive care unit (NICU), where he stayed for 117 days. We named him Christopher because we both liked that name, and we thought the meaning was especially appropriate: Christopher was the strong saint who carried people, including Christ, across a river. His middle name is Hugh, Mike's dad's name, because we decided that he would be Christopher's angel and watch over him while we were not with him.

We were told that he had a 50% chance of survival, and if he were to survive, a 50% chance of major disabilities. All we had to hold onto was our hope. We survived that traumatic period in our lives by:
  • Documenting what was happening in a journal (given to us by a friend whose own son had been born prematurely)
  • Celebrating each milestone (every week Christopher lived, I created a new sign for his isolette and we bought him a new mylar balloon)
  • Praying together and talking to each other about how we were feeling
  • Hoping and thinking as positively as we could (this was extremely important to me)
  • Being buoyed along by the wonderful support of our family and friends
  • Singing to him constantly, each time we visited the NICU

Grandpa holding Chris for the first time

We learned that instead of celebrating the typical infant milestones (holding up head, rolling over, etc.), we would celebrate new milestones (first time we got to hold him, coming off the ventilator, first time he wore clothing, moving to Level 2 [step-down unit], first feeding)...ones that were in no baby book. I silently seethed when I heard women complaining about their pregnancy symptoms...or about how hard new motherhood was. Some people--including my OB/GYN at the time--told us later that he looked like a fetus. We were so grateful to people who looked at photos and told us he was beautiful...to those people who did not run scared or avoid us...and to those people who told us that they knew he would survive and be just fine.
Right before going home
The day we left the hospital, five days after Christopher was born, was one of the hardest days of my life. And the day we brought him home, right before Christmas, was one of the happiest.

We grew very close to the NICU staff and other families who had gone through the same experience, as we were all part of this little world that few outsiders understood. From the beginning, Chris was a tough little cookie. But as one of the nurses used to tell us, Never Trust a Preemie.

He had three surgeries when he weighed less than four pounds and he had all sorts of near-death scares, beyond the severe respiratory distress he was under constantly. Most notably, he had cerebral edema and low flow to the brain, after which he was completely nonresponsive for one day. That was my lowest point--the neonatologist told us that he would be completely brain damaged and we'd have to decide whether to continue life support, and I believed him...but Mike didn't. Then the next day we received the result from his ultrasound, written on a piece of paper: "Normal Head Gettel."  

Another time when he was a few months old (after we thought he'd dodged most of the bullets), he experienced a life-threatening infection and the doctors and nurses were huddled around him for the whole day trying to get him past it. That was Mike's no-hope day. Fortunately we each experienced those low points on different days.
Six months after we took Chris home, he had to have a follow-up MRI to make sure his brain was okay. The MRI found an "arterial venous malformation," which is essentially a clump of veins in his brain that would cause him to have a stroke if we didn't have it removed. We asked the neurosurgeon if we could wait for six months and redo the MRI. He agreed, and six months later, it was gone. Dodged yet another bullet.

Chris had horrible reflux as a baby, and my first Mother's Day was spent in tears as I was trying to force-feed him rice cereal. I was scared that he would be diagnosed as "failure to thrive," because he was so far off the growth charts. (Fortunately our pediatrician focused more on his growth trajectory and his overall health and less on how much he weighed. He also trusted our parenting and knew we were completely dedicated to Christopher.) He walked at 15 months adjusted (medical term for "how old he should have been, not actually was"), didn't talk until he was three, and had balance, fine and gross motor, and social issues as a small child. He did everything on his own schedule. About the only thing Chris has done early is learn how to read!

We had read that preemies can have a horrible time adjusting to their new environment when they go home. They often fuss and cry a lot and have a difficult time bonding to their parents. (In fact, preemies are at higher risk for abuse and neglect, because they can be difficult to care for and the parent/child bond develops more slowly when a baby is sick in the NICU.) So we were both surprised that Chris was an incredibly easy baby--our easiest of all three, in fact...even though he was on multiple medications and hooked up to a huge oxygen tank, a laptop for a medical study, and an apnea monitor). In fact the only time Chris became difficult was when he developed reflux and began projectile vomiting a few times a day, including when I would try to nurse him. (I remember when we took him to see the pediatric gastroenterologist, and Mike showed him his notebook where we'd continued to record every single thing that Chris ate...and the doctor told us we needed to relax!) The feeding issues caused us both no end of stress, but other than that, he was a happy little guy. He always struck me as just simply happy to be alive and with us. 

We kept Chris out of public places for five months after he came home, because we had known another (older) preemie who had died of respiratory synctitial virus and we didn't want to take any chances. We took him for walks outside and allowed family and close friends to visit (after washing their hands, of course!), but  otherwise kept him hibernating until the fateful Mother's Day 1997 (the day I cried because I couldn't get him to eat!). 

The following summer he attended my sister's wedding, got baptized, and celebrated his first birthday! And throughout it all, he interacted with his surroundings, and beamed. Life was good!


Baptism

From childhood, Chris has always loved music. I'm convinced this is because we sang to him in the NICU. He used to memorize all of our CD cases (musician, album) and we would discipline him by threatening to take his CDs away! 

Chris had his share of challenges growing up--he had to get glasses by age three (because of his retinopathy of prematurity, a preemie eye disease that causes some babies to go blind), developed epilepsy in third grade (diagnosed after a traumatic grand mal seizure and ambulance trip to the ER), was diagnosed with ADD (without the H) in fourth grade, struggled with math, and has had to have years and years of orthodontia (similar to his mom!). But this year he:
Chris continues to be a happy person who loves life. He loves music and is a walking musical encylopedia. Even though he's a teenager and has a few moody teen moments, for the most part he's very easygoing and pleasant. Even though he finds his younger brothers to be annoying occasionally, he also gets a big kick out of them. He loves his family and is not afraid to admit it (even though I have learned not to put my arm around him in public!). He is one of the most forgiving, kindest people I know and would never intentionally hurt anyone else's feelings. Seriously...I aspire to his level of forgiveness. The kid does not hold a grudge; I kid you not.

He's a survivor and a living,breathing miracle, and I'm so proud to be his mom. (Crying now as I write this, which is not good since I'm not supposed to blow my nose for two weeks after my ear surgery!) He will always be my hero. I love you, Chris!


Look! My arm's around him!


4 comments:

  1. Marie, I had no idea about what Christopher (and you and Mike) went through. So much of your story mirrors our own. I am so absolutely touched by your story and love to hear of Christopher's accomplishments.

    ReplyDelete
  2. Thanks Laurie and Susan. Susan, I am always so drawn to stories of other babies and families who faced difficulties. Thanks for your comment--I'm so glad we found each other (through Mike)!

    ReplyDelete
  3. Congrats man on some real. Im 16 right now too (turning 17 next month) but its good to see a kid nearly my weight (1lb 11 ozs) just as healthy as me

    ReplyDelete

There was an error in this gadget