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Tuesday, May 19, 2009

How Our Journey Began

When I was pregnant with Ella, I did all of the testing they recommend, including the AFP (or triple screen). The results came back that I had a 1 in 12 chance of her having Down Syndrome. Now, I know that these odds were more in our favor than against us but I think that throughout this pregnancy, I kind of just had a nagging feeling that something may not be just right. So we decided to go in for the level II ultrasound and see what that showed before we would make a decision on the amnio. During the US, they did see a few markers for Ds such as a missing nasal bone, sandal toes, and something small in the heart. So right then and there we decided to do the amnio. I think, for me, that those next few days while we waited for results were the hardest. I think I already knew….but I still held on to a glimmer of hope. I had to go into my OB’s office a few days later to get a shot and he came in and told me that, yes, she had Down Syndrome. I just looked at him and said “I knew it”. Then I had to go and call my husband and tell him the news. I think that was harder than getting the results!! So, the next few days we were devastated, sad, grieving and even touching on that horrible thought of terminating the pregnancy. Luckily a friend put me in touch with someone with a child with Ds and she was able to tell me that life wouldn’t end as we knew it, that this child would be more amazing than we could ever imagine and that we were Blessed!! For me, that was all I needed to hear. Also, as we were waiting for our test results, my cousin came across a blog about a little girl with Ds who had the same name as we were going to name our little girl….Ella Grace…. this blog had pictures of the most beautiful little girl who just stole my heart. http://theamazingellagrace.blogspot.com/ During those dark days after getting our results, I looked at this blog over and over again and before I knew it, I started to get excited again about my little girl. For me, that was it….I moved forward and never looked back. It took my husband a little bit longer (actually until her birth) to really be excited about her again. I think because as moms, we are attached to them so much more because they are in us. So the rest of the pregnancy was uneventful other than switching to a high risk OB. Ella decided to arrive 5 ½ weeks early but still weighed 6 lbs 9oz and had no breathing problems or anything. She initially was in the regular newborn nursery but then due to low blood sugar, they decided to move her to the NICU. As anyone who has been in there can attest, once in there, it takes forever to get them out. She stayed in the NICU for 9 days. Her biggest concern was that she was born with Transient Myeloproliferative Disorder which is basically a high white blood count. This disorder puts her at an even higher risk of getting leukemia than other children with Ds. So, since her birth, they have monitored her blood counts. A couple of months ago (March 2009), some of her numbers dropped, specifically her platelet count. When it stayed down for a few visits in a row, they decided to do a bone marrow biopsy. Although the bone marrow was still clear of any leukemia cells, the chromosomal tests showed that the cells are there and that most likely she will develop leukemia in the near future. They were originally talking about starting chemo right away but her blood counts look good and they have decided to hold off. So for now, we wait and see what is to come. But so far....every minute of this journey has been an absolute joy. Everything people said we would feel about our baby is 100% correct and more. We could not love her more!!!

14 comments:

stephanie said...

Well, I guess you figured out what to write. You did a great job.The emotions that you experience once you find out your baby has DS are overwhelming, but what a blessing they are when they are born.I am excited to meet you and to follow along on this unpredictable but wonderful journey.

stephanie said...

P.S plus I think it's cool I left your first and second(lol) comment.

Kim said...

The emotional experiences were so similiar to mine. The only difference really is we found out after Mattie was born. After seeing all the blogs and their wonderful families I never looked back either.

Emily said...

I am so glad you found my blog. I love meeting new Mom's that are in the same situation. I'm not sure if you've read our story (previous post back in October 2008), but we didn't find out until Justin was 6 months old. I love my sweet boy and every other child in this world with or with out Down syndrome. We are very lucky mommies! She is DARLING!!!

Angela said...

Denise, she is so cuuuuute!! I love her! Thank you so much for the email and the update. I'm so glad to have your blog now!! I will add it to my sidebar.

I am so sad to hear about her platelet count. I will definitely keep you all in my prayers!!!

:)

Cathy said...

Ella Grace is so ADORABLE!!! That smile is absolutely precious. Welcome to blogging. I'll look forward to learning more about you and your family.

Lacey said...

We didn't know about Jax until after he was born, but as soon as they put him in my arms I knew it. It didn't bother me one bit, I was like ok, we'll deal with that. What bothers me is how ignorant people still are about downs people. Welcome, welcome

Heidi said...

Ella Grace is beautiful!! Thanks for sharing your story. I am looking forward to reading more about you and your family.

I have two little boys. Caleb who is almost 5 and Joel who is almost 2. Joel has Down syndrome and I found that out when I was pregnant with him. He has been an amazing blessing to our family and I can't imagine our life without him!

Kacey Bode said...

YAY!!! I'm so glad you are blogging, and even more glad that you found my Ella Grace!!!!

You emailed me about my header on my blog, I will have the lady that did mine contact you if she is able to help you out, she is AWESOME!!

I'm glad that they are holding off on chemo, especially since she is SO healthy and SO happy!!! Ok, that's it for now, can't wait to read more!

Heather said...

Your little Ella is so very darling .. thanks for the phone picture of her and Preslie ... made my day!Funny how these blogs carry us and support us in our time of need.Mine was a little guy maned Sam and he will forever be my special 'boyfriend"!I will continue to be here for whatever you may need Denise and I CANNOT wait to meet you guys on Tuesday ... if that day works out,no pressure.

Tim and Kelli said...

Welcome to the blog world. Ella is beautiful. Thanks for sharing your story. I have learned so much from everyone on here and love to share stories and pictures of our little ones.
I have 2 little girls. Brooke is 2 and Lindsey is 7 months old. We found out Lindsey had DS when she was born.

stef said...

Denise....you are so strong. I love your writting, it touched both Lloyd and my heart when we read it. I'm looking forward to checking in on your happenings from time to time.
You are a mom's inspiration!!!

Anonymous said...

Denise, found the blog. Mr. D always said that God gives special gifts to special people, because they have His trust. Ella is yours and Joe's special gift. You have such a strong faith with a stong family unit and it comes thru in everything you say,write or do. You are surrounded with loviing family, friends and prayers. I will continue to monitor Ella's blog. Kiss her for me. June D

Ssejors said...

I'm glad Miss Ella Grace with the pretty face was an inspiration for you. That girl is a stunning beauty. Seems to be that ALL Ella Graces are simply Gorgeous.

I didn't find out that Hunter Bean had DS till after we had him but when I had time, i googled everything I could about DS. That's where I found Prince Vince and the blogging Community of Parents and families of kids with DS! I couldn't ask for a better community of support and friends. There are so many people to talk to and encourage you. And I Promise that you and Your Ella Grace will do for another family what Kacey and her Ella Grace have done for you. Encourage and uplift you!

Welcome to the DS blogosphere!

Ssej and Bean