Powered By Blogger

Saturday, June 5, 2010

Every Hour

Evie is supposed to drink/eat about 24 oz in a day. However, lately she has not been eating the whole amount. As of 1:00pm yesterday afternoon, her Diatician said to feed every hour, even during the night, at 1 oz per hr. and to save the formula that she doesn't drink, so that we can see what she isn't getting. Now this may be a little confusing. So let me try to explain.

I make up enough formula to last an entire 24 hr period. Supposedly, Evie is to get every drop that I make, in order for her to be 100%. Roughly it translates to 1 oz per hour. 24 oz in a 24 hr period. Usually she would take 2oz, every 2 hrs. Since she has not been finishing her bottles, we need to see what she isn't getting. Essentially, to make sure she isn't in a metabolic crisis.

So, if there is 3 1/2 oz or more, by 1 pm sat. then Evie will more than likely go into the hospital. However, on Sunday we kind of get a second chance to see if she can do better. So basically if she does it Sunday, she will be in the hospital Monday.

We have been diligently feeding her, trying not to wake her up, and letting her rest as much as possible. For whatever reason, be it prayers, a miracle, or she is just feeling better, there isn't even an ounce yet in the bottle!!!

This means that she is getting the right amount and isn't wasting as much as we thought!! I am super excited, yet I know that Sunday could be a different story.

I know its very methodical and it may be difficult to understand! Its hard for me to sometimes too! Especially on no sleep. And trying to figure out meds now, is simply impossible! I am just happy because yesterday, things seemed impossible and downright despairing. Today, she seems to be better, so I'm better!

Thanks for all the prayers and the help. The Hubby and I were talking, and we both know that this family would fall apart had we not had you this past week. Thanks for all you do!

2 comments:

  1. Hi Brittany. You don't know who I am but I found your blog looking for stuff about LCHAD. I have a daughter that also has LCHAD.She is now 5 years old and doing pretty good. It hasn't been easy but I just wanted you to know that your not alone. We have a group on Facebook for parents with kids with FAOD's. There are a couple different ones on there. I also have a personal page where there are a couple different mom's with kids with LCHAD and other mito disorders. Well I hope your little one continues to do well. I know how stressful it can be when they are that little.
    Take care,
    Candise Ott
    http://www.facebook.com/mom23nutz#!/profile.php?id=543085042

    ReplyDelete
  2. Hi! Its so wonderful to meet you. I always look forward to meeting other FOD families. This has been the hardest thing for our family. It really does feel like we are alone! Its hard looking at other kids who are perfectly healthy and thinking about your child and how difficult this road is for them too. Its so good to hear that your little one is doing well. I hope that we can keep in contact, through FB or on here. Thanks for commenting. I look forward to speaking with you again!

    Brittany Henagan

    ReplyDelete