Remembering the little things

On Sunday my family and I will embark on a journey. It's only a 5k journey, and it'll be walked. It's not a race. It won't be done anywhere special. It's the March of Dimes March for Babies, and I'll be participating along with my sister and two nieces.

March of Dimes is my charity of choice, and it has been ever since the birth of our first son, and even more so after the birth of our second son. The goal of March of Dimes is healthier babies, and a lot of that focuses on learning more about prematurity. That's why I feel so connected with them.

Throughout fundraising, I've relayed our story to a lot of people. They see my two boys, now fully healthy and, aside from the baby's stubborn refusal to walk until almost 17 months, developmentally normal. It's hard to believe they ever struggled to breathe, were ever too sick to hold or so tiny that 'preemie' sized baby clothes enveloped them like a collapsed tent.

Asher, 1 day old. He weighed 2 lbs, 9 oz.

Tiny Asher inside the incubator, wearing the smallest 'preemie sized' clothes available 

I've been remembering the little things. (When you parent in the NICU, there are a lot of little things.)

Some of the little things are undesirable, they're morbid and desperate "what ifs" that constantly run through your mind as your baby endures test upon test for everything that could go wrong.

Then comes the day when you, the mother, are discharged from the hospital but your baby is not. This has been my only experience with childbirth because both my babies had to remain in the NICU for many weeks. On the day of discharge, most mothers happily sit in a wheelchair, their arms curled around a tiny baby swaddled in a mass of blankets, with balloons wishing a "Congratulations!" trailing behind in the air. The daddy carries bouquets of flowers from well-wishers, and the whole family boards the car for a ride home together.

That's not the case for NICU families.

Instead, I sat in the wheelchair alone, my arms not containing a living baby but rather a few gifts sent by thoughtful friends. The nurse wheels me down to the hospital lobby, outside of which my husband has pulled the car around. They help me into the passenger seat, just the two of us, with no baby or car seat or anything precious in the back. He is not wrapped in a blanket in my arms, ready to go home. No - our precious "little thing" is still upstairs in the NICU, alone in his incubator. The only human touch he receives at the moment are painful jabs with needles or the harsh cold of machines used to evaluate him or help his body function.

I know it's the best place for him, but it is heartbreaking. I want to touch my baby. I want to be with him every minute to hold and caress him and assure him that it will not always be like this.

And I worry. I worry, as I sit in my home, without my baby, that he won't know I'm his mother. I worry that he will bond with a NICU nurse and not me. I worry he will learn to fear human touch, because so far his only experience with it has been unpleasant. And of course, I worry about whether or not he will live, or suffer long-term effects from prematurity.

There are a lot of little things like that, constantly flowing through a NICU parent's mind.

Asa in his incubator in the NICU after I had been discharged from the hospital and sent home

But many of the little things are wonderful. There's the first time your baby reaches three pounds. The first time your baby takes milk orally. The first time his milk intake increases. The first time he nurses effectively. The day his feeding tube is removed. The miraculous day he is moved from the incubator to a newborn cot. There's the first time he breathes without a machine. The first day he goes without an apnea spell.

This is the first day Asher didn't need the oxygen machine, and we finally got to see his face.

First "kangaroo care" with Asher

First time it was finally safe to hold Asa

The first day Asa was healthy enough to stay in a newborn cot, not an incubator

And those are all little milestones a NICU baby accomplishes before he even leaves the hospital.

Once he gets home, there are yet more little things, like the first day he wears 'newborn' sized baby clothes because he's finally outgrown the 'preemie' sized ones. There's the day he is suddenly awake, more awake than he has seemed his entire life until this moment. The day he looks at you - really looks at you.

Asa's first smile

Now, we're experiencing the little things that every parent does. Our children are healthy and growing. We glory in the day our son said his first word. The first bite of cereal. The first time he slept through the night. And I'm sure the first temper tantrum will come, and the first time our sons no longer think mom and dad are cool. The first overnight spent away from home. The first time Disney World is not the vacation destination of choice (at least not with parents).

Life is full of little things and first times, and we will celebrate them all.

We will celebrate them because it means our precious 'little things' are becoming 'big things.'