Here's how we found Eli's condition. I had a normal pregnancy and Eli was born full-term. At birth, Dr. noticed Eli's low hair line and high pallet which often indicate Turner's syndrome. Chromosomes test came back normal. I couldn't really tell that Eli looked different back then, except for her ptosis(droopy eye lid) in her right eye. The only problem was that Eli was not able to nurse, and even with a regular bottle, she was not very good latching on a nipple. Then, when Eli was 8 weeks old, she had a fever of 102. Dr. thought it was too high for a little baby, and so Eli was admitted to a hospital where she was diagnosed with urinary tract infection. Eli was put on a monitor, and it picked up that Eli had some episodes of sleep apnea. CT-Scan showed a large empty spot in her brain, and soon later with MRI, we learned all about Eli's diagnosis.
I just want to thank you for sharing this blog about your family. I know it has been a few years since an update, but I stop in to check every few months. I hope very much that you are all doing well.
ReplyDeleteMy own daughter was diagnosed with a very similar set of malformations (DWM, agenesis of the corpus callosum, and ventricularmegaly) in utero -- but late. Very late in my pregnancy. I hesitate to share the details, because I worry about your judgment, but I will share for the sake of connection that my family chose to end our pregnancy because our daughter's prognosis was poor. I love my lost baby with all of my heart and I think about her all the time. I often wonder what she would have been like. I do not regret my decision, but I do miss getting to know my baby. Meeting Eli through your blog has brought me closer to my own daughter. It is a great gift that you unknowingly gave me.
Whenever I go to look up Dandy Walker, I find a whole lot of information on kids who are near-normal or perfectly healthy. This always burns a bit. My daughter wasn't going to be a miracle baby. She had a set of malformations, not just the mild variant DWS. Eli's diagnosis is much closer to my own daughter's. I so appreciate your honesty and openness.
I hope that you won't reject my gratitude and appreciation because I ended my pregnancy. Know that I am sending you and Eli and your entire family love, and that I am wishing you all the very best.
Thank you thank you thank you for being brave enough to share these stories of love and of life.