Some of you have been asking for an update on Sadie (fine, one of you). I haven’t been updating quite as much about her because my obsession with her weight gain has thankfully become less all consuming. That is not to say that what she eats/doesn’t eat, drinks/doesn’t drink and does developmentally/doesn’t yet do isn’t on my mind everyday, it’s just that with all the support I have and the consistant – if slight – gains she makes, I have relaxed a bit in searching for answers.
There’s a woman who’s son goes to preschool with my daughter. Her son is a tiny guy -he probably weighs 24 or so pounds and he’s three. This is the same woman who planted the Russell Silver Syndrome thought in my brain -which took me weeks of Xanax therapy to remove. When I talk to her and realize what our kids have in common I have to figuratively put my fingers in my ears and say “la la la la la la la la la” while she throws around words like endocrinologist, growth hormones, growth specialists, geneticists and syndrome. It’s pretty much the same thing I do when Elisabeth Hasselback speaks on The View. No one in our circle of therapists thinks that Sadie has a syndrome of any kind. The consensus is the kid was just born tiny, my womb failed to provide her the proper nourishment and she’s not a fan of eating. That much hasn’t changed.
As of yesterday, Sadie weighs 15.11 and she’s 14 months old. And, yes folks, that’s WITH a g-tube. What I failed to realize when we went in for the g-tube surgery, is that although putting in the g-tube definitely helped to stabilize Sadie’s weight and make sure she doesn’t lose any, it’s not a miracle weight gain tool. I kind of thought it would be. I mean, with all the vacillating over getting it or not getting it, I couldn’t help but think that we would be rewarded for our bravery in putting her through the surgery by waking up a few months later with a fat and happy baby. I thought she’d gain faster than Oprah when she falls off the mashed potato wagon. Not so much. Babies can only take so much formula and food whether by mouth or by tube. Sadie does not have the capacity in her little belly to take much more than two ounces at a time.
At first we’d try and slowly build her up to bigger and bigger feedings but she’d eventually spit them back up. Finally I realized that she is who she is and on my own accord went to just giving her a couple of ounces at a time frequently throughout the day. Luckily, her occupational therapist has taught her to drink through a straw cup and she takes much of her Pediasure on her own. We then give her another eight ounces at night with a pump -a pump which, by the way, gives both me and my husband performance anxiety every night. If you do anything or nothing wrong while setting it up, the alarm goes off in a most annoying manner. Especially since there is ANOTHER BABY sleeping in the room and a four-year-old across the hall. Sometimes it takes us four or five tries to get the pump going. We are on our second pump so I don’t think it’s a mechanical thing. It’s sort of like playing that Operation Game when you were a kid. If you so much as touched the edges while removing the plastic pancreas with the little tweezers a buzz went off so loud you practically jumped out of your beanbag chair. Also, after the feeding is done, the alarm goes off again and we (me) have to go turn it off at three a.m.
So Sadie is growing and I’m still tired. Also, she’s almost walking. She can pull to a stand on almost anything and has stood up by herself from the floor once (she refused to do it again). So, she’s still behind – or delayed (whatever that really means) but she is catching up like a mother fucker!