We moved two months before I found out I was pregnant with Wylie. Our new home has been such a blessing! Wylie has a stander, activity chair, oxygen supplies, a vent, etc. and there is room for that equipment and us! I cherish that this home holds all that we have known of her.
I remember when I first held the secret of being pregnant. After three miscarriages, I could barely hope that we would care for baby on this earth again. Then when we learned that Wylie had trisomy-18, the hope became almost unbearable. I imagined walking into the entrance of the Lexington Cemetery much more easily than seeing a baby wear the small bundle of clothes we had gathered, or kicking in the little crib Devan gave us. Impossible. It all seems so impossible. Even now.
But she did come home. She has filled the clothes, outgrown the mini crib, bobs in the bathtub, gets lots of snuggles from her siblings, and can move room to room without her oxygen tubing trailing behind. Now First Steps therapists are visiting weekly coaching us as she grows and developed. Now she has two wonderful nurses that come alongside us during the weekdays, so Gavin and I can also attend to the other children and responsibilities.
Now Wylie is two! One thing has not changed. We celebrate the now. We honor her two years of peril and victories--her quiet warrior spirit that has slowly and steadily gained strength for her body. We are grateful to have all this time at home. Not a day passes that I don't remember how we got here--got home.
For Wylie's second birthday, we would like to share about the Pediatric Advanced Care Team (PACT) at UK KY Children's Hospital. They have walked beside us every step of the way from my first high-risk OB appointment, to a recent photo shoot arranged by a partnership with PACT and Walden photography.
In the beginning, I did not understand how exceptional PACT is. Now that I am more acquainted with other Trisomy 18 families, I realize that we have amazing advocates in them. Many families shoulder the burden of having to navigate the medical system and trying diagnoses alone. The doctor, nurse practitioners, chaplain, and social worker with PACT showed up for us (every admission often as soon as we came to the ER), explained procedures (the benefits of the G-tube surgery and her heart repair), stood beside us (that night she had three chest tubes without a clear path forward), solved problems (securing a vent for BiPAP at home, helping with hospital bills, and applying for a medical waiver), held our pain, our hands, and hope.
PACT is such a crucial group to have at the hospital for families like ours. As you can imagine in these trying times, they could be considered a step away from "essential." They are not actually administering medicine, or completing medical procedures, but they are doing something that is so very necessary: serving as mediators between patients with their families and medical staff. They are spectacular!
Please consider making a donation to PACT in honor of Wylie and the ways they helped her get home! Follow this link and clink "DONATE TO PACT." Thank you, Warriors, for considering blessing families in need of PACT's help in Wylie's honor.
https://uky.networkforgood.com/projects?utf8=✓&search_string=PACT#
We give thanks to God for Wylie and we praise Him for being the author of all that is good!
"Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change," (James 1:17, ESV).
