Ella’s first year
Re-reading the blog from the first year has been hard. I almost feel like you miss so much by just getting my recaps, but here goes nothing. (The blog is linked in my profile if you want to read more!) The word for Year One would be HOPE. It just so happens to be Ella’s middle name, but not because of her life, but because it was her paternal grandmother’s middle name…but God knew.
I read through getting discharged 4 weeks after she was admitted into the NICU, the crazy/insane number of doctors appointments that first year and the tests that were run on this baby girl…but all of my posts lead back to HOPE. Hope that she’ll catch up, that they aren’t sure about timelines, that God is bigger and that we’ll be okay. Over the course of that year I can watch my heart break as the reality starts to set in. We see therapists from about 3 months old. We see neurologists and neurosurgeons, eye doctors, hearing doctors, developmental doctors and the totally typical myriad of first year pediatric appointments.
We had cousins born, friends born…and we watched everyone pass us up developmentally. She started going to church with us on July 14th and we have cherished every Sunday that they have loved on her for her entire 14 years. We battled head control (still do), her core strength (still working on this) and even feeding issues…which seem to be a forever fight. We started our 7-year battle with chronic urinary tract infections and the fear of kidney damage…which you will see repeated over the years. She started holding her bottle and eating cereal about the time that the bomb was dropped that she needed a feeding tube because she was aspirating at each feeding. It felt like such a backwards move. We heard the term #cerebralpalsy in relation to a possible diagnosis and then a confirmed diagnosis by the end of her first year. It was God’s gift of grace that we had time to get used to it first.
There are stories of people loving us so big and so hard in the middle of it…and many of those friends have stuck around to experience the hard in different seasons, and some moved on as their life took such a different turn from ours. The emotions I had in that first year were of n earthly fear wrapped in a heavenly peace…and PEACE won. I will say, a feeding tube surgery felt like the biggest set back, but it was just preparing us for what was about to come. As always, ask me ANYTHING!!