Friday, June 19, 2009

Taking advantage of naptime

Where's the time to blog these days? I wish there was just a little more of it to at least post how Lily's doctor's appointment went. I can't say it went all that badly. He wasn't very impressed with her weight gain--she's now up to 5 pounds 14 ounces--, but he was very impressed with how much she was moving. I'm not sure he's fond of us bottle feeding her, but he didn't suggest against it. There was a little scare. After the appointment, Dave said that he checked on his paper "Failure to thrive." With the weight issue, I took that to mean that she was not doing well, but after speaking to the hospice nurse, I felt better. She said that when a baby doesn't have a "normal" weight gain, it's considered failure to thrive. That has nothing to do with life expectancy necessarily. Whew!

But considering weight. And normal. What is normal anyway? I read somewhere (although I can't find it now) that the average weight gain for a baby with T-18 is 2 ounces per week. If that's the case, Lily is right on par. She's gained exactly two ounces each week. According to her condition, I don't consider that failing to thrive.

Luckily, we didn't have to go for the sweat test after all. The doctor's office called and said that the second PKU screening came back fine so that wasn't necessary. Still, could Dave or I be a carrier for cystic fibrosis? We're considering genetic testing in the event we decide to have another child. I guess that would show up then.

Things are pretty stressful around here these days. Lily is eating roughly ever 3 hours now. It takes about an hour to feed her (that includes pumping, feeding, and sitting up for about 20 minutes after feeding), so I feel as if I now have a two hour break. We're looking at buying another house, so getting this house prepared for selling feels like a nightmare. I'm running on very little sleep because I don't have much discipline when it comes to going to bed early. We've either had a doctor's appointment or someone over to discuss Lily and her condition every day this week. Good thing we had a relaxing vacation last week. I'm thinking maybe we need another one! But things seem to be going well, so I really shouldn't be complaining. I'm trying very hard to keep a positive perspective.

Oh, and please pray for my friend Shannon. She goes in on Sunday to begin preparing her for Baby Oliver's arrival. Oliver also has T-18, and there's an issue with his cord. Also, Oliver has hypoplastic left heart syndrome. Shannon has emailed me and said that she's having a peace beyond understanding. I'm so glad in these final moments that she's able to enjoy Oliver and his kicking. Thank you for taking the time to pray for her!


  1. Jill, When I read your post i felt I was living a conversation I had last week while Annabel was in the hospital. I don't like the term failure to thrive. Excuse me, Our babies are alive and thriving, right. What is their other option!!!
    A sweet nurse explained to me that their are two types of failure to thrive. One is our of sheer neglect where some just don't take care of their babies with proper nutrition and care. This term is for normal babies also. But our sweet one when said "failure to thrive" is actually called Organic failure to thrive. It just means in their growth. Our babies are not going to be the same size and not suppose to be. Full trisomy babies are smaller than normal. But for the term, I wish they would never write it but it is on all of Annabel's diagnosis'. Just thought I'd throw my two cents in for what it is worth. I just can't help but take it personal.
    I am praying that you find some time for yourself. Annabel ate the same way. Each feed took an hour and I would not rest when she rested. It is hard for you since you have another little one to care for.

  2. Jill,
    Please don't get too worried about the "Failure to thrive". That is just a diagnosis that's on the superbill. I have seen many babies with that diagnosis that are completely healthy. she's just smaller than average which is to be expected. Sounds to me that things are going very good. Except of course your schedule. My Goodness. Please take care of yourself.
    Lisa Eaves

  3. Yeah, "failure to thrive"--only the medical community could come with a phrase like that! They just don't get that Lily's presence, impact, and spirit are beyond scientific understanding. I'll pray for you to have rest, clarity, and the peace only He can give. Thank you for giving us the privilege of praying for Lily's "friends" Shannon and little Oliver!