Thursday, May 6, 2010

Looking for Answers

Well here we are on Thursday, Ellie is SIX WEEKS OLD, and I still don't have all of the answers. And probably just as many questions as I did last week! I am feeling a lot better about the situation and hopeful that there is an end in sight.

We have been waiting all week on this mysterious 'enzyme' level test results from the Mayo Clinic. The same enzyme test that came back abnormal for Ellie on the state screening. They still aren't in. After talking to the doctor at UVA in the metabolic clinic, she didn't think they would even be here tomorrow. That is crazy! But, she did make me feel 100 times better about everything. Since Monday we have continued to feed Ellie half breast milk and half formula. Well, that went well until late Tuesday, early Wednesday morning when she decided she ISN'T drinking from the bottle. She will scream and cry and let the formula pour out of her mouth. Then she will cry and cry until I break down and nurse her. So, yesterday I think she drank about 3 oz of formula total and then nursed the rest of the day.

I explained all of this to the doctor and what we had been through last week with pumping all of the feedings. She said, "Why don't you nurse her until you come in on Friday and we can do another blood test to check her galactose levels."

Ummm, people you did that test on accident last week! I didn't tell her that, but I did tell her that we already had those tests run. Sure enough she looked up Ellie in the computer and she was surprised. She said she didn't think that there was going to be an issue, her galactose levels were in the normal range. She didn't have any build-up. Most children with Duarte Galactosemia will have some build-up. She said that a normal enzyme level is 18, the worst case scenerio being 0. She said any child falling between 12 and 18 has enough enzyme to process milk, and she believed that is probably where Ellie is....

She also went on to say that some states don't even test for this. More puzzlement on my part??? She said that some states don't treat it, and don't feel that it is a genetic condition.

I asked her about Duarte Galactosemia children developing speech delays or learning disabilities. She said she had been doing this for 25 years and had never heard of that. Then she asked me where I was getting that information?

The internet was my answer.

I guess won't be googling for a my medical advice anymore.

We are still going in to meet with the specialists and visit the clinic tomorrow afternoon. I am praying that we will have this enzyme test results and we can finally get all of our questions answered. I know we still don't know exactly what is going on, but I am feeling much better. The galactose build-up is what is worrisome, and she doesn't have any. So, my hope is still that we had two bad tests.

In the mean time I have been nursing Ellie. I am at a loss for what to do about the formula feeding. My sister had a good idea to mix some breast milk in with the formula. We might try that tonight. I just don't want her to refuse the bottle all together. I would like to leave her with a babysitter at some point in the upcoming year!

Throughout this process I have stored enough frozen breast milk to feed another newborn for their first year. I think I might be throwing my breast pump in the trash once this is all over!

7 comments:

laura said...

oh girlfriend, i so hear you in the non-stop pumping department! i read an article recently in time magazine about people who exclusively pump and feed their babies bottles of breastmilk. all the time. by choice. mad props to those super moms because, man, i am so over my breast pump after ben's month-long hospital stay! so over it!

i'm so sorry ya'll still don't have any official answers, but so happy that you are feeling much better about the whole thing!

fingers crossed for a good clinic appt tomorrow!

and happy happy 6 weeks to ellie!! we have benjamin 2 month well baby visit tomorrow...maybe he'll weigh 8 lbs!! :)

xo!

Anonymous said...

Sounds encouraging. Do you remember when Ava wouldn't take the bottle? Now there was a girl who refused to take it, from anyone. Finally at 6 months old, I just took a sippy cup and poured milk in her mouth and she swallowed it, b/c at that point she was starting to swallow rice cereal. Until then, I felt "trapped" to my baby. I tried EVERYTHING, even leaving the house for hours while my patient mother tried to get her to take it. It was hard finding other mothers who could relate. You could try leaving the room, some babies can smell mommy from a mile away! Good luck! Oh, and I told you the internet was evil, lol! -Talayeh

Krystyn said...

How stressful for you! I'm with the person you spoke with on the phone. I would keep nursing until you are told otherwise. She seems happy and healthy.

And, then work on the bottle again later when she's a little older and aren't (rightfully so) stressed out.

Thinking of you.

Lindsay said...

Did you try the formula breastmilk? Wondering how that worked! I sure hope you get some answers soon! Love you! See you this weekend :-)

amanda said...

i say go all boob! for real - clearly that is when she is the happiest (and you are too) and with the new info from the doctor it sounds like you are in the clear!

but clearly i am not a mama - just an over emotional mama :)

hope the clinic visit goes well...

Jennifer said...

I hope you'll get some answers soon. I guess we don't test for that in our state...I don't remember it if we do :)

I say just nurse too :) She'll get the bottle thing sooner or later.

NeedANap2 said...

I'm glad you finally got some results. (I came over via Bytes of Memory.) I can totally relate to the issue of only breastfeeding though. We have 4 children, all breastfed pretty well and all took a bottle until stinker #4 child! She only wanted Mommy. And this was the child I *needed* to take a bottle b/c we were planning to take a cruise. Anyway, I wrote a post asking for help
http://needanap2.blogspot.com/2007/10/wfmw-backwards-day.html
and then this was a follow-up
http://needanap2.blogspot.com/2007/10/wfmw-bottles.html

To test her, I went shopping all day and when I felt so full and um hard, when I didn't think I could make it any more was about the exact time of day she broke down and took a bottle. Kudos to my cousin and family for taking care of her and our other children for our cruise!! (That was back in 2007.) She'll be 3 soon and is a delightful child though she's sometimes a little stinker. :)