Wednesday, April 28, 2010

Needing Some Prayers for Our Little Girl

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This is a tough week in our house. We received one of those phone calls on Monday night that every parent fears. Ellie had a positive on one of the newborn state screening tests a week ago. The doctor said the test is very sensitive to heat and it was most likely a false positive. We repeated the test and I was a bit worried but didn't think too much about it. Monday night he called again to say that the test came back positive a second time. I felt like was going to throw up my dinner. I literally dropped what I was eating and threw the rest away I was so ill.

Both tests have said that Ellie may have an abnormal enzyme in her blood that doesn't allow her to process galactose in milk. The term for this is galactosemia, and I have never heard of it until now. It is only happens in 1 in every 60,000 children, rare, very rare. She doesn't have the classic galactosemia, which is good because that is very serious. But, she may have a lesser version called Duarte Galactosemia. This could effect her in a few different ways, but mostly it would be controlled through her diet. We would have to speak with a genetic/metabolic specialist to discuss how we would proceed with her diet.

She had more blood drawn yesterday at UVA and it was sent directly to the Mayo Clinic. This is the only place in the country that does this test since it is so uncommon. We will not know the results until Friday (hopefully!). For now as a precaution we have been giving her all soy formula and I have been pumping at every feeding.

The frustrating piece is that this test is very sensitive. It is mostly sensitive to heat. When it was initially mailed in when she came home, it was 90 degrees here. So, we got a letter saying that there were a number of false positives in the state that week. That they believed our baby to be normal, just repeat the test. In general the test has a 40% false positive rate. So, my prayer is that we randomly had a bad test and now another false positive.

Our doctor keeps saying too, that Ellie is doing wonderfully and isn't presenting any signs to be worried. She is growing like crazy. At her last appointment she had gained 9 oz in less than a week. So, she isn't showing us that breast milk is an issue. Once we looked up information on this, we found a list of lactose amounts. Breast milk has 100 times more lactose than cows milk. Wow! I can't believe that something would be wrong and all she has been having is breast milk. It is all just very confusing. She could just have less of the enzyme, but still able to drink milk and go on with a normal life. There are so many different outcomes. For now we just have to wait. Again.

I am so worried.
I am exhausted.
I am scared.
Chris and I had a good cry about it all last night.

Watching your baby get blood drawn is horrible. After two techs and three tries they were finally successful. I was a puddle of tears, and I just can't stand to see this poor baby endure anything else. I am done with all of it. I just want to enjoy life and our new family of four. I feel like we are being punished in some way, and it just doesn't seem fair. Now we have a few more days to be filled with worry.

24 comments:

Amy said...

Oh my. . .I will pray that your beautiful daughter is perfect as punch! Don't let this little road block get you too down! Have faith that God will take care of your wonderful family!

Be Blessed!

Julie, the mama said...

Praying.

Candra said...

Definitely praying for all of you!

paige said...

sweet sweet clare, i'm praying for your precious family right now
i'm praying that was indeed a false prositive
& if not, that he will give you peace & discernement.
these first few weeks with our perfect precious little ones are so special, i hate that you are so frightened
praying you feel his peace just all over you, right now
:)

Christy said...

Well shit. I am so sorry you have to go though this. Praying for your sweet baby girl.

Megan said...

oh dear Clare. How sorry I am to hear that you all are going through such a rough time. Please know that you are in my thoughts and prayers. I feel very good that Ellie is just fine. I have been through a similar situation while pregnant with Audrey. I had many false positives during ultrasounds indicating that something was wrong, and she is perfectly healthy. Email me if you want to talk. I know we don't know each other that well, but I am here if you need someone to talk to. I know how you feel. Take care.

Megan

amanda said...

sending lots and lots of love filled prayers....

Heather @ Cancer Mommy said...

The waiting is the worst isn't it! Been there, done that. Just know that we are thinking of you all and praying for you.

amy said...

I will be thinking of you all week Clare! After the rain comes the sunshine.

Jodee Leader said...

I am so sorry to hear this. I will keep sweet Ellie in my prayers. Hang in there!

Christy Cleveland Yamagata said...

Lots of prayers coming your way!! Thinking of you and Baby Ellie..I just know everything will be ok!

Jenny said...

hoping and praying everything will be okay for you guys!

Lindsay said...

love you and praying!!

Anonymous said...

Clare,

I was so sad when I read your email yesterday. We are all praying that these tests were incorrect and that Ellie is perfectly healthy. Love you!

Retta

Amanda said...

I'm sure all will be ok, but sending lots of love and prayers to you all x

Petey Pie's said...

Praying for your precious family! Y'all have been through so much and you need God more than ever. I pray that He will grant you peace and comfort in this time of worry. Please keep us posted!

laura said...

oh sweet friend,

thinking of you now more than ever! right before ben came home, we got a letter in the mail that his newborn screen was "not-satisfactory". i had a heart attack until i talked to the neonatalogists, so i totally know how you are feeling...

i'm so sorry you have to go through all of this . . . like another one of your commenters said, after the rain comes the sunshine. love that saying. so true, so true.

with love from carolina!

Katie said...

Clare,
So sorry that you are having to go through this scare. I'm lifting you all up and trusting God to provide for all your needs right now. He is good! Please keep us posted.
Love you.

Krystyn said...

Clare, I'm praying for you all..and praying for two false positives for this test.

Terra said...

The agony of the wait is worse than the outcome. I had tears as I read this for what you must be feeling. I know you have some wonderful family members that care so so so much about you all and your support system will be strong either way. Hang in their!

Jolanthe said...

Praying, praying, praying that this is all just a dumb ol' test that can't tell right from wrong. The whole thing doesn't make any sense and I'm sure this is emotionally draining for you all.

Hugs and prayers!

Jenny said...

I'm so sorry for you and all your family with this huge worry. I saw this on your sisters blog. I am keeping all of you in my prayers.

Jennifer said...

Claire, I pray that Ellie's test comes back normal. Email me if you get a chance jennfergray02@yahoo.com

Dawn said...

I'm visiting from your sister Lindsey's blog. It's so hard to sit back and watch your little one going through blood tests. I'll be praying that God helps you to "not be anxious about anything", but to keep on turning to Him in prayer and petition as you wait on these results.