Sunday, November 30, 2008

some changes

Yesterday afternoon the docs decided to recheck Tyler's cbc (complete blood count). A 13 is healthy (and what Tyler had gotten on previous checks) and a 6 means blood transfusion. Tyler's cbc was 7. This is not good news. This means that Tyler's red blood cells are breaking themselves down. The good news is that since she is a 7 she is making new healthy red blood cells. Hopefully she can stay above a 6 since a blood transfusion is very risky. What this means, though, is that Tyler has some sort of a blood disorder. The doctors wouldn't even begin to speculate which blood disorder she could have- we will have to wait for the lab results. Some of the blood tests will be back in a few days, but some of the tests need to be done at the Mayo clinic (for more rare blood disorders) and these results won't be back for a week. The doctors are confused as to why this didn't show up on the cbc they performed when she was admitted- it could be a lab mistake.

So, it's still a waiting game- just now we're waiting to find out what blood disorder Tyler has. The good news is that her latest bili level was 12.5 so she is getting rid of her bilirubin and is at almost healthy levels (and that she got to go back to breastmilk- woohoo!). The bad news is that until her red blood cells stop breaking down she probably won't be able to keep her bili levels down on her own. We have no idea how much longer Tyler could be in the NICU but we are preparing for the long haul. Please pray that Tyler's blood disorder is easily treatable and won't effect her quality of life. While we are frustrated, sad, and even devastated at times, we know that God is in control (and I don't say that lightly). We trust Him completely- no matter what happens. This whole experience has only led us to lean into God more as we are on our knees for Tyler.
We got to hold Tyler for an hour today! What a blessing. She smiled at us a lot and reassured us that everything was going to be ok.

4 comments:

Tay's Mom said...

What a blessing to have some sort of answer and what an AWESOME blessing to hold your sweet little Tyler! I love that picture. It's like she was trying to tell you something through that twinkle in her eye - that she can feel your love even when she's not technically in your arms. I don't know why, but it just looks like she wants to reassure you of that! So precious. I'm so glad that God is giving you some answers. Thank you for the updates. I can't stop thinking about you guys. Keep on as you're doing - rest in knowing that He loves you all so much. Find comfort in Him, and in that beautiful Tyler twinkle!

rachel said...

You and your family are in my thoughts and prayers!

The Leonards said...

Sarah and Blake...I just looked at your blog for the first time in many days...I am praying for precious Tyler and for you as you trust in God and wait for results from the latest labs. I know you must be weary. Praying for rest and His peace to cover you completely. Thanks for the updates...Love, Laura

Al said...

we are definitely continuing to pray with ya'll and trust that God is in control. thank you for keeping us all updated on here...wish we were closer so i could give you a hug and help out with the kids. much love <3