Remarkable Robbie: 2010

Friday, December 24, 2010

Christmas Eve

This year we traveled to Indianapolis for Christmas to visit Robbie's great-grandma. (G.G.)

Back from the pool at the hotel.

Having a snack so I can keep my energy up to try to catch Santa!

Sunday, December 5, 2010

One of the challenges that has come with Robbie talking more and more is wondering what in the world he's talking ABOUT.

The experts say that you shouldn't pretend to understand a toddler, but press them to communicate well. But let's be honest, sometimes you just don't know and you're both frustrated.

This night, he kept saying "Assipah! Assipah!" For the life of me, I could not figure out what he meant. Asphalt? Ash pah? As pa? I just didn't know. Finally I patted him on the head, "yes dear, assipah."

He finally gave up on me and brought a visual aid- APPLESAUCE!

I'm sure he ate at least a spoonful, right?

Wednesday, November 17, 2010

Awareness 2010

Today is November 17. November 17 is National Prematurity Awereness Day. The March of Dimes has asked bloggers to blog for our preemies in honor of this day.

Last year I spoke about what it really means to be a preemie; that a preemie isn't just a small baby, but an unfinished one. All of his systems are underdeveloped leaving him at risk of infection, disease, and overstimulation. But it doesn't just stop when those systems finish developing.

The damage done to a baby born early is not easily overcome. For a baby like Robbie- not "just" a preemie, but a micropreemie- it can often take years before he will be able to catch up from the damage done to him. For Robbie, it means that almost every accomplishment he makes comes with an asterisk. Even when it goes unspoken, the implication is there.

When someone says how big he is, they mean in comparison to the pound and a half he was born at. He still hovers at the bottom edge of the growth charts. He is significantly smaller than children even more than a year younger than him in his daycare class.

When they comment on how well he's eating, they mean compared to 6 months or a year ago when 100% of his nutrition had to be pumped directly into his stomach, not to other children his age. He still has an extra hole in his stomach by which we keep him hydrated enough to live.

When we talk about how active he is, we marvel that he's doing so well now considering a year ago he wasn't even rolling over. Two and a half years later, we still struggle to overcome the damage his body sustained in being born 14 weeks early. He still gets daily medicine to treat his hypersensitive stomach.

We still fight the damage done to his lungs by being born before they were done developing, from the pressure put on them from the ventilator that kept him alive until he could breathe on his own. He takes a breathing treatment of steroids every night all winter because even a slight sniffle goes straight to his lungs causing him to gasp and wheeze. When he gets that sniffle, we double that dose and add another drug to dilate the passages in his lungs so that he can breathe.

He's come a very, very long way. We've gone from seventeen sessions of therapy a month to just 9. We only see one specialist every 4 months instead of the sometimes weekly treks we made during our darkest times. He no longer receives calories or nutrition through his G-tube, just hydration. He's going through a language explosion, beginning to communicate with us with more than just whines or grunts or the occasional sign. But he isn't done yet.

As his mother, I'm not sure I'll ever overcome the anxiety that prematurity brought to our lives. Even if he woke up tomorrow completely caught up, I would still over analyze small things, wondering if it's another symptom of his early birth. When he squints one eye to point at something, his therapists write notes about checking his vision- the effects of the oxygen on his eyes could show up at any time. When he resists a textured ball, it's called a sensory problem attributed to his nervous system experiences too much too soon. As his mother, I know in my head that these are just cute quirks that are part of Robbie, but the fact that they come into question is just another gift that prematurity has given us. I watch closely, balancing a fine line of vigilance and security.

Of course, being a mother to a preemie brings a lot of unique pleasures. Tonight, Robbie sat on my lap letting me feed him bites of steak & carrots while I fought tears of joy. I'm not sure I'll ever stop marveling at the pleasure of seeing him thrive. It's something that parents of children born knowing how to eat take for granted.

Robbie's birth also brought a lot of amazing people into my life. From parents of babies in the NICU with Robbie to other parents I've met online, I'm blessed to be surrounded by parents who also marvel in the small things (and I don't just mean the size of our babies!)

The experience of parenting a child who was born early or spent a long time in the NICU is unique enough that early this year I founded a message board for parents of these babies born too soon. These other parents have been a huge resource for us. While we all lean on and appreciate each other, the one thing we all agree on is that it's a club we wish we never needed to join. We are a sorority whose initiation is worse than any hazing the Greek system could imagine. We all dream of a day when we can close our membership.

Currently one in 8 babies born in the U.S. is born too soon. Each day nearly 1500 families give birth to a baby who will come with extra scrutiny and worry; a baby who comes with asterisks with even a question as simple as "how old is he?" It's a club that's way too large.

So on this day, I ask that you think of our babies. Right now at a hospital near you, a mother is wringing her hands, staring at a monitor instead of her baby's eyes. She's praying they can all make it through the night. She's wondering about today, tomorrow and next year. She's feeling guilty, wondering if she could have done something different. She's looking into the faces of the strangers caring for her not-yet-supposed-to-be-newborn, hoping they know how important that tiny bundle hooked up to all the wires really is.

These worries are real. Many babies don't make it. Many have issues that won't be outgrown. Many will, but only with a lot of hard work and worry.

We are very blessed that Robbie's lingering issues have been manageable. He is expected to outgrow them, though no one can say when. God and medicine, and the March of Dimes, has given us the opportunity to see our miracle's smile and hear his laughter every day. Not everyone is so lucky.

--Trish