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!!!