There is apparently a world in NICU they call ‘feeders and growers’. A place where they send babies who were born a bit too small or need a little extra help getting home.
We didn’t go to that world.
We went to a world of beeping alarms and red carts. Of vent tubes and intubation and extubation and intubation again. Of ups and downs and good days and bad days and days where you didn’t know what the doctors would say when they pulled you aside.
It’s easy to get lost in that world. There’s no road map, no early morning schedule telling you which days will be the good days and which days won’t. No telling which days will leave you exhausted, mentally and physically, and settling on wine and cookies for dinner again for the fourth time this week because you just can’t.
That’s why we made the decision very early on to celebrate the good.
In early November, we got a call early one morning that Jackson wasn’t doing well. He had been sick overnight and was getting worse. His stomach was distended, his fever was up, and they weren’t sure how he was going to do over the next 24 hours. We raced in to the hospital, only to be pulled into a room before going back to his bedside to talk about things like surgery plans and options and mortality rates.
The next 52 hours are a blur. We went from terrible to stable to worse to bowel resection in less than a day. From seeing doctors laughing and joking with us as usual to the look doctors give when they aren’t 100% sure how to tell you this is really serious. From ‘he’s very sick’ to ‘I’ve seen worse’ to ‘we’ll do everything we can to save your son’.
We came out of those two and a half days better but not unscathed. Jackson ended up with what was thought to be a case of NEC (necrotizing enterocolitis) but was possibly yet another birth anomaly plaguing our little man. He now sports an ileostomy bag and 12 fewer centimeters of his large intestine.
A few days later, I was in the elevator on my way to get my second coffee of the day – or was it the third; I lost count – and I ran into another mom I know from the CVICU. She’s a mom who’s been there and seen it and always seems to know what to say. She asked about Jackson and I gave her a recount of what had happened. Before I knew it, I was in tears.
Giving me a hug, she said, ‘Celebrate the good days. Remember the days when things were going well, when he was happy and smiling, off his ventilator, and doing great. Use those days to get you through the tough times. There are going to be bad days for sure, but if we can celebrate the good, we can get through them’.
By this point, we had hit the bottom floor. I cried, thanked her, and got off, realizing she had missed her stop to stay on with me and share her words. Words I’m sure she’s both shared with other and heard herself multiple times over the months she has been here. Words I share with new moms I meet whenever I can. Words I try to tell myself on good days and bad days and days when we’re just not sure.
Jackson is strong and his prognosis is good, but these are definitely words I’ll carry for me when we get home and that I’m sure every mom could use.
Celebrate the good things that happen with your child.
Having children isn’t always easy. There will be hard times and trying times and times you wonder if those ‘drop your kid off without judgement’ fire stations take 15-year olds, but that’s okay. If we can all remember to celebrate the good times, though, they can always get us through.