2012-06-08 13:18:09 by Sarah Plant, Patient Family, as posted on the inside.akronchildrens.org blog.
We spent last Sunday afternoon and evening at Akron Children’s Hospital. We were there to visit Bekah’s former NICU roomie (who we LOVE—if we were puppies we’d lick her face), but the reaction of some of the people there reminded us of just how many children come back as patients again and again.
One of the nurses asked if Bekah was there, and I said yes. When she said “oh no, what happened,” I quickly qualified my statement. Yes, Bekah was back, but not as a patient; she was just there to hang out. We’ve been exceptionally blessed that our visits (other than heart surgery) have been purely social.
On our way out of the hospital we overheard a woman on her cellphone explaining to someone that a baby was given 50 cc’s of food, and “he ate it all!” Chris and I smiled at each other, and later laughed about the memories that came flooding back. 50 cc’s fits in a teeny tiny bottle. It’s less than 2 ounces.
We fought to get Bekah to eat every day before heart surgery. We counted every cc that went in, and estimated each one that came out. It was a tedious task that we still haven’t quite outgrown. We know that most parents don’t count every ounce (yes, we’ve at least moved on to ounces) and keep a running tab throughout the day, but at this point we’re way past caring what other parents do.
After heart surgery Bekah came home a MUCH better eater. There are days that it seems like we can’t get her to stop, and she’s been tearing through clothes so fast that I’ve actually been caught stuffing her into things that are way too small just so I could say she wore them. She looked like she was wearing a wetsuit yesterday.
I don’t mean to say that our eating problems are over, because they are far, far from gone, but they have changed. While she now is a good eater, we discovered that she has an allergy to both cow’s milk and soy.
It’s not a swell up kind of allergy, but an upset tummy, yucky poop kind of one. It’s severe enough that it wasn’t good enough for me to avoid milk and soy in my diet, which was much more difficult than I thought it would be.
I really don’t know how parents of allergic kids keep them safe, because there are a ton of hidden dangers – unlisted ingredients, unknown ingredients, the ingredients things are cooked in or beside – that have to be considered.
I guess I may be finding out how they do it though. For now we’ve switched to a super hypoallergenic formula and we’ve been very slowly starting solids.
Solids. A milestone for any baby, but for one who needed an ng tube just four months ago, it feels like we haven’t just hit a milestone—we are dancing on top of a mountain. And we aren’t going to let a few stinky allergies stop us!
Read the rest of Sarah and Rebekah’s story through her blog, Following Your Heart.
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