I think when you first have a baby, the common experience is to worry incessantly that something is wrong or could go wrong with your new little person whom you have no experience taking care of. I also think the common experience is that nothing major ever does go wrong. But sometimes it does. My twin daughter, Sadie stopped growing at about twenty-eight weeks’ gestation and although I knew she’d probably weigh not much more than two pounds, every doctor said she’d be fine. "It’s the best case scenario" my high risk doc told me referring to Sadie’s head growth. "Her brain is getting the nutrients it needs so that when she is delivered and starts eating the rest of her body can catch up." And that’s how it should’ve worked. But it didn’t.
From the time she came home from the NICU, she couldn’t have been less interested in eating . When presented with a bottle she fought it by thrashing her head wildly about like it was filled with battery acid and not yummy yummy formula. Meanwhile her sister, Matilda, drooled when she heard the microwave beeping like a cat responds to hearing a can opener. She never met a bottle of formula she didn’t want to devour. As you can imagine, Mattie gained weight like a speeding train and Sadie barely put on enough to survive – eventually earning the diagnosis, failure to thrive or FTT.
My husband and I tried everything to get her to drink more formula. We bribed her with Baby Einstein, extra swing time, chewing on an old shoe (come on, it’s hard to bribe a baby) – nothing seemed to work. When she started solid food, she ate a bit better but never enough to put some baby fat on her tiny behind. We consulted doctor after doctor, got tons of advice, implemented many of the suggestions yet Sadie remained and still remains way too small for her age.
A few weeks ago, it was recommended by our pediatric GI that we place a g-tube into our sweet little otherwise healthy baby’s stomach. "A TUBE? WHY? There must be another way! There’s got to be another way. Only babies with something wrong with them need something as drastic as a tube to eat! Our baby is not like that. She’s just small" I said to our doctor, to my husband, our nutritionist anyone who would listen. "I can do more! I can work full-time at just getting her to eat. I’ll treat it like a job. A real job, I won’t slack off! I won’t pretend to work when I’m not really working like I usually do. I’ll punch in at 7:00 a.m. and not let myself off the clock until 7:00 p.m. –hey if nurses can work those hours so can I."
"But you are already doing that and she’s still not putting on the weight she needs to develop properly" the doctors would say back to me –not understanding that they were calling me a failure, a bad mother, a mom who couldn’t take care of her child’s most basic need –eating.
It took me a few weeks for it to sink in that it’s not about me. It’s about Sadie. And there is something wrong with her. But luckily for Sadie it’s something that can be improved by medical intervention.
I sat in the waiting room at Cedar’s Sinai with two other sets of parents who had dropped their grown children off for surgery and I asked them "Does it ever get easier?"
"Oh God no" said Betty, a curly haired Chicago Jew. "Your babies are your babies and they always will be." Her husband chimed in, "You don’t stop worrying about them ever. You are always the parent."
"Do you want to read my US Weekly?" Betty asked kindly.
"Actually I brought my own and I’ve already read it" I answered. Because, of course, I had US Weekly.
"Can I have it?" Cathy, the other mom of a college aged son chimed in. My son actually loves the Fashion Police segment in the back. I can read it to him later.
"Sure" I said, handing it over. We were all in this together. All parents. And today, there was something wrong with all of our children.
I don’t know exactly what was wrong with their kids because of all those damned Hippa laws. Privacy…non disclosure…blah blah blah…so I don’t know if their surgery will cure them of what ails them or if they will have a journey ahead of them like my daughter.
The next thing I knew I was being called back to be with my baby while she came out of her anesthesia. I held her while she cried, sang her Beatles’ songs, stroked her hair and forced myself not to shed a tear. I told myself, "Now is not the time to cry. Now is the time to me to be strong for her –."
Sadie came home yesterday with her button on her belly and although this wasn’t what I expected or how I hoped things would turn out –my living room looks like a hospital supply closet with Sadie’s feeding pump, feeding bags, syringes and tubes –this is what it is. And I am finding as millions have found before me, that even when things don’t go smoothly with your children’s health, you rise to the occasion and you do what it takes to make them better. That’s called being a mother.