Sunday, June 27, 2010

Back to the Hospital!

There is lots and lots to fill you in on regarding our past week: Becca turning 2, moving to our new house (the best present I've ever given a 2-year-old!), Becca physical therapy evaluation at Vandy, John's and my speaking - keynoting! - at a conference on prematurity, and Saturday's Elmopalooza, but, as I've just stopped in at Moe's in the midst of errands to use their free wifi (still not internet at the house!), all I've only got time to tell you about the upcoming week.

On Tuesday I managed to wrestle my way on to the nutritionist's (at the GI) schedule, and she snuck the doc in to have a looksey. I told him flat-out that we needed to do something because she's throwing up more and not gaining weight, and, frankly, I just can't take it anymore.

So we made a plan. I was caught completely off-guard, however, when he told me that the plan involves 3-7 days in the hospital and that he'd like them to be next week. Whoa! We'll go in tomorrow whenever a bed opens up (you wait at home until they call - nice system), and they will run some tests, procedures, etc. I know that Dr. Moulton is planning on doing a scope so that he can look down her esophagus (and up her other parts - oh my) and see if there are any signs of food allergies. (Apparently they don't all manifest themselves in commonly observable ways.) While she sedate for all that fun, he will place a pH probe in her stomach. It will stay in for 24 hours so that we can see if something is off that might be contributing to the reflux. Then they will feed her through an n-g tube (nasal-gastric tube: nose to stomach; the same tube she had in the NICU for so long) and control her calories precisely and then weigh her periodically to see if she does indeed gain weight when she is getting enough calories. If not, there's something else going on that we need to uncover. If so, they will put in a g-tube, which is a semi-permanent feeding tube straight into her stomach. I say it's semi-permanent because, while some kids and adults have them their entire lives and depend on them for their full nutritional needs, Becca would likely grow out of her need for it in a few years. For now, we would use it to supplement the food that she does take orally so that she can eat what she wants and I won't lie awake at night counting every calorie she took in today (minus the ones she vomited) and brainstorming ways to get that total up to 800. They may also perform a nissen fundoplication, which would keep her from throwing up as much (more on that later if it comes about). I imagine to get this all done we'll be there more on the 7 days side than the 3.

In some ways, it feels like a step back. I thought hospital stays - at least ones that lasted several days - were behind us, especially now that we have made it through 2 RSV seasons without incident. And it feels like we are sending to her an inpatient feeding rehab (which we are), but one like you send severely anorexic patients when they are severely malnourished and have to be force fed and physically rehabilitated before they can begin psychological treatment. Truth be told, I feel like I've let my 2-year-old become anorexic. If I can mess her up this badly this early, what does adolescence have in store for us?

Of course I know she's not actually anorexic. But I think I'm learning the same painful lesson that mother of kids who do struggle with eating disorders learn...and that all parents eventually need to learn, though I'm not sure they all do. I can't make my daughter eat. I just can't do it. In fact (and you would have thought with Becca's personality I would have learned this earlier), I can't make her do anything. Sure, I can forcefully do things to her - like wrestle her on the changing table when she doesn't want to lie down for a diaper change - but I can't make her do it on her own. The truth is that she is a separate person. She is an individual. Becca is Becca and I am me. As close as we are, as much as I love her, and as much as she depends on me (seriously, if I had a dollar for every time she stretched her arms out and said, "MAMA," this week, I'd be dictating this post to my servant), she is her own person, and she is in control of her own body and what goes in it. The odd thing is that this is a lesson that I really want her to learn, but it's not one I want to learn about her. I want her to be independent, confident, clear that she doesn't owe anybody anything with her body, and comfortable with that responsible self-control. But, wow, I want her to do things my way. I want her to gobble up her food and ask for more. I want her to make a mess with her food and smear spaghetti sauce all over her face as she shoves it in. I want her to eat a damn cookie. I want her to eat enough so that the doctors don't cut a hole in her stomach and pour it in. But she won't, or, in other words, because of her health and sensory issues, she can't bring herself to do it. And, in the end, I can take her to therapy 1,000 times a week, I can sing and dance, I can sneak, I can cajole, I can bribe, but I. Can't. Make. Her. Do. It.

Hello, parenthood. Nice to meet you (again).


p.s. The hospital has wifi, so I should be able to keep you updated. Since John or I have to be there all the time, we'd love visitors, but make sure to call my cell phone first in case we are off the floor for tests, etc. Even better if you come bearing some energy to entertain a toddler for a few minutes so we can take a break. I mean, I love her and all, but a mom can only dance for so long before she collapses. :)

11 comments:

  1. Hopefully they can figure out what's going on so she'll enjoy eating as much as the rest of us do. I'd definitely come visit if I were anywhere close, but as it is I'll be thinking about you!

    She's lucky to have such an awesome Mom!! =)

    ReplyDelete
  2. Hoping Ian and I can stop by this week (if I remember -- I can't remember anything these days). Feel free to text if you get desperate for company, since we are not very far away. I think by Tuesday I'll be safely non-contagious. Symptoms are pretty much gone.

    ReplyDelete
  3. You'll all be in my thoughts! I hope you get some answers.

    ReplyDelete
  4. Let me know if you're still there Monday or Tuesday of next week. I hope not, but if you are, Chris and I would be happy to come down for a bit of respite for you. I'm on vacation until then in Southern Missouri. That's a bit of a drive. :(

    ReplyDelete
  5. I do hope everything goes smoothly, and you get the answers you need! Grow Becca Grow!

    ReplyDelete
  6. Hope they figure out what in the heck is going on and that Becca stays as happy, entertained and comfortable as possible! Prayers for all of you! Thanks for the updates. Glad they have a bed and y'all can get this thing going and hopefully y'all will get some answers soon! Love!

    ReplyDelete
  7. Love you guys. Let me know if you need anything or if I can do anything. I'll call sometime this week to how it's going.

    ReplyDelete
  8. I have logged on "finally" and have been reading your blog, the most recent, I am sorry to hear about your upcoming "return" to the hospital w/ Becca; I am praying for all of you, especially little Becca; as we all know, she is a fiesty little lady and will make it through w/ smiles; keep Elmo closeby and maybe that will help too
    :-) I sure appreciate your wonderful writing, and commitment to keeping all concerned updated; Thankyou for sharing this site w/ me. I will check often for any updates! Prayers for all, Karla Bull OT

    ReplyDelete
  9. Wow Nancy...it feels like only yesterday she was racing around the garage and eating those yummy Teddy Grahams! I'm definitely thinking about you. I will try and come visit...Charlie gets in town tomorrow, so I'm picking him up at the airport at 1, but maybe I can stop by before that!?!?!

    ReplyDelete
  10. Definitely keeping you in our thoughts and prayers. You two are great parents and Becca is an amazing baby! Much love for you!

    ReplyDelete

Background