Down Syndrome Awareness

In this month of Down Syndrome Awareness, I'm reminded of a day almost 2 years ago, well before the words Down Syndrome were in our everyday vocabulary and my daughter Heather was scheduled for a routine ultrasound. Though we did not hear the words Down Syndrome at all that day, we did hear other words that we learned meant there was an increased chance she'd have DS. As I've read articles and blog posts this... month about parents' experiences I'm very thankful for Heather's experiences under all her doctors' care. I'm particularly thankful for that day of the ultrasound when Heather's regular ob/gyn was off and she was just seeing the ultrasound tech. Whatever the ultrasound tech saw that day brought Heather's ob/gyn to the office to tell Heather personally what was seen and what it meant. I am thankful through all the doctors and care that not once did any of them pressure her to consider abortion and all of them honored her wishes not to have an amniocentesis with no pressure for that either. I know some believe in her shoes they would have wanted to know for sure and many would have chosen abortion rather than face the "burden of raising a child with DS." I know all our lives have been greatly affected and changed by the arrival of Charli, but a burden? Heavens No! A blessing always! #downsyndromeawareness

Snuggles Again!

Dear Charli,
On Saturday after surgery you came off the ventilator and your mommy and I were able to hold you. The favorite part of our day is snuggling you!




You no longer had the vent tube, but now you had a feeding tube. The feeding tube is the white tube in your nose. It contained your Mommy's milk but it emptied into your lower intestines, below the surgery site, not into your tummy. Your doctors wanted to be sure your lower intestines worked properly, and your surgery site had to heal before any food
could go through it.






I love the look on your Mommy's face every time she holds you. There is so much love there!





I can't wait to bring you home!
Love,
Grammy

Post Surgery

Dear Charli,

Your surgery was Thursday morning and Friday night you still had not awakened. Although we were concerned by this, doctors were not alarmed. Your nurses encouraged us to try to waken you Friday night.  I video recorded you trying to waken, but no success.





You were a bit puffy, especially in your face, after surgery. The nurses explained you were retaining fluid after surgery.


All the extra tape on your face was to keep all your tubes and wires in place. You have a new tube after surgery, one hooked up to a ventilator to help you breathe. By Friday night you still weren't breathing on your own. Your doctor hoped to be able to wean you off the ventilator by Saturday.




We couldn't hold you while you were on the ventilator. We could stand by your bed and talk to you and touch you though.


 



You would open your eyes just far enough to peek at us but you didn't fully waken Friday.



Hoping to hold you soon!
Love,
Grammy