Hand to Hold is a local non-profit that I've talked much about before. They have a special place in my heart for many reasons and I'm always happy to help them when and if I can. Yesterday, they asked me to write a little something about our feeding issues for an upcoming project their working on. As I began to put the summary of Bryce's feeding issues down on paper it occurred to me that perhaps I should share with all of our readers as well.
Many of you and most parents can't appreciate the struggles related to feeding babies that have been intubated and/or hospitalized for long periods of time. It's hard for the parent of a normally developing child to really get the stress but I think most can imagine that they'd be terrified if they couldn't be sure their child was getting enough nutrition, enough fluid, enough nourishment to not only thrive but just to survive.
This is a very real problem for many parents and this is our "feeding story:"
Bryce's extreme prematurity meant that at birth he was unable to breathe on his own. He spent five long months in the NICU at Dell trying first to survive, second to breathe independent of equipment and finally to nourish his body with my milk.
It would prove to be breathing that would be Bryce's biggest challenge. It took four months on and off various ventilators before he was finally successful on high flow nasal cannula. Of course, as all preemie moms are aware, that just meant it was time to face feeding - no small hurdle in itself.
After being intubated with a breathing tube for so many months Bryce's "suck muscles" were weak and trying to feed from me or a bottle took so much energy that he would tire out well before filling his belly. We supplemented with tube feedings by way of an NG tube for weeks while trying to build his eating strength and coordination. We were grateful that he rarely aspirated while feeding but as time wore on it became obvious that if we didn't take Bryce home with a feeding tube he would either remain in the NICU for the forseeable future or end up catching some nasty hospital bug.
So we swallowed our fears and began our NG placement training. There really is nothing worse in our books than holding your infant son down while shoving a tube up his nose, down his throat and into his tummy. Oh and be sure not to hit the lungs, which is really just luck (especially since he's screaming the whole time), because then when you start the feed you may drown your child. Not sure if it's in the lungs or stomach? Well when you're in the hospital under strict supervision for placement you just take a quick listen with the nearest stethoscope but when you mention buying one for home use your reprimanded for being to NICUish and not enough Mom-ish. Oy vey.
It's easy to laugh off the stress of the ordeal as we look back now but it really was a true test for us. We now compare all things to the torture of placing an NG tube - ALL things.
Hand, foot and mouth disease, suppositories, baby puke and diaper blow outs all pale in comparison. If there were such a flag that read, "If I can place an NG, I can do anything," I'd proudly wave it high. I'd even get one of those cheesy mini flags for my car. Maybe one for Caleb's truck too.
Eventually though they let us take Bryce home with us and just like all the cliches you hear, he almost immediately began to grow bigger and stronger. After just a few short weeks at home we took out his NG tube, for what would turn out to be forever.
We hardly followed the book, or the doctor's advice for that matter, when we decided enough was enough. But it was the holidays and we felt that as Bryce's parents we knew him better than anyone. So together we made the joint decision to pull the tube and hope for the best. We could only pray that lacking those extra calories he was getting through the tube his desire to eat enough on his own would kick in. And thank the Lord, it did.
We were blessed and oh so grateful to place it finally away in the medical keepsakes box where it remains today.
(Yes, we have a medical keepsakes box. And it's full of blood pressure cuffs, hospital ID tags and myriad other odd momentos. No, I don't know what I'm going to do with it so for now it just stays safely put away in the closet. Yes, I know that's weird. And, no I don't care!)
Of course, our feeding struggles by no means ended the day we decided Bryce would no longer get supplemental feedings by way of NG tube. But we know enough to know just how lucky we are that Bryce's oral aversion was minimal. He always liked pacifiers, seemed to enjoy taking his milk from a bottle and overcame a texture issue with stage 2 foods in just over a month of daily trials.
We're painfully aware that this isn't the case for all parents but that is why Hand to Hold is so important. Because they have the unique ability to put those parents together and let them explore possible solutions, vent about frustrations and take solace in knowing they aren't alone.
I can only hope that our story will help another family along the way.