Alice Elizabeth, my daughter, who I am so proud of.
However, they are concerned about Ali's development and think she may have some delays due to the lack of growth in her brain. We are being referred to Dean McGee Eye Institute because her right eye is slow to keep up with her left one. They also ran more blood tests today to test for muscular delays, so far 2 of the 3 tests have come back normal and we're waiting for the third test. We are grateful for her growth but this news of concern for delays has weighed heavy on our hearts.
We will be heading home late tonight or tomorrow. Taking with us a portable feeding tube and port that Ali will have for 1-2 months. Home Health Care will come to our house for weight checks. They'll teach me how to do everything; change out all the bags and tubing, keeping track of ounces, how to administer the feeding tube should she pull it out etc. She will go down to only having the feeding tube in 20 hours a day instead of 24 like she's on now.
My heart is hopeful yet heavy. I feel a deep gratitude we are leaving with a feeding tube and scheduled appointments for possible delays. Most of the little ones around us are awaiting surgeries, transplants, and this is their new home. The pain and sadness here is overwhelming, our sound machine drowns out the cries from the baby next door and across the hall but there's nothing to fade the pain and helplessness on their parents' faces. It's just so hard.
I'm happy to leave here and get home to my girls and yet sad to leave this place. This place, these amazing nurses took care of my girl and new exactly what she needed. They have tenderly cared for her with kind hands and gentle hearts. I will miss them.
Please pray for our Ali to continue to grow and for wisdom for all of her doctors and specialists. Pray for Sophie and Emma to adjust to the daily changes coming their way of appointments, Sooner Start visits, weight checks, etc.
You are oh, so loved little one.