Thursday, February 2, 2017

What A Difference a Year Can Make



Deep breath.
A year ago today we were woken up at five am by the NICU doctor. At first I thought she was a nurse coming to check on me but then I realized who she was.
Even when it's your first rodeo, you know that it's really bad news when the doctor comes into your room, sits on the edge of the bed and asks you and your husband to wake up to "talk."
TaterTot had started having seizures. Our hopes from the day before that everything would be okay were instantly erased. We needed to sign consent forms for a spinal tap and an ambulance transfer to Children's Hospital.
The words of my Labor and Delivery nurse from the previous day rang in my ears: "Don't worry. It can't be that bad. If it was really bad, he would be at Children's".
Some words you never forget.
Later the doctor would tell us that we were the "most calm and rational people." That while we were obviously upset by the news we stayed very rational, quickly signed the papers and let them get right back to work. So I guess we got a gold star for that. Small consolation when you believe your child is dying.
I won't go into what happened to us physically once she left but if you've never been through something like that before just know that your body reacts more quickly than your brain can process what is happening.
We were able to see and hold TaterTot before his ambulance transfer and then there we were: at the hospital with no baby.
I had to be discharged (since, though it had taken a backseat, I had actually delivered a baby less than 48 hours prior to this). Thankfully my doctor came quickly and we were able to go.
We left that hospital without our baby in his car seat. The car seat we had so carefully installed (and reinstalled) before his arrival. It's hard to describe that feeling though I know there are parents who leave with an empty car seat without the hope of ever holding their baby again so in that regard we were still lucky.
In the next two days we would watch our newborn baby have around 50 seizures (and those were just the ones that you could see). I would hold his twitching limbs and time each one with a stop watch to be written down in a log.
Right hand, mouth, right leg. 33 seconds
Right hand only. 1 minute 12 seconds
Left arm, mouth, left leg. 47 seconds...
Eventually we would get the news that he had meningitis. We would see a picture of his brain that showed the white spots of permanent damage. We would cling to the words "this is not a global injury" but know that the impacts were not only completely unpredictable but we would not get answers for months or even years as to what they may be.
A year later we are a little (quite a bit) worse for the wear but unlike then life is relatively normal these days. Wonderfully, beautifully normal. Time and time again our worries over this year have proven to be unwarranted. We have slowly started to come out of the fog of fear and panic, though there will always be some amount of worry and we cannot yet rule out all potential impacts. But we can see a future. We can look further than the next day or week. We can worry about "normal" things like whether our house is baby-proofed enough as it seems we are only a few weeks away from having to manage a fully mobile, walking toddler.
What a difference a year can make.