Zion and I officially arrived back to Cincinnati Children’s Hospital on Thursday afternoon. And despite the doubts of some, we are so grateful to proclaim that Zion made it ALIVE! HALLELUJAH! We thank our Lord who covered and protected him the entire way. Zion has been here a few days and has been getting settled … Continue reading A relentless will to LIVE
Homebound!!!
As I write this to you late on Tuesday night, we have amazing news. Zion is going back to Cincinnati Children's Hospital on a flight tomorrow (Wednesday) morning! Our primary insurance kept denying the back transfer, but our secondary insurance (which we didn't try until the other day) gave us a surprisingly speedy green light. … Continue reading Homebound!!!
“Trachie” life :-)
Some people are medication-dependent. Some people are wheelchair-dependent. "Trachies" are ventilator-dependent some or all of the time. Pretty early on in this journey, while still pregnant with Zion, I had conversations with multiple people: physicians, geneticists and even friends and family who seemed to have an aversion to the thought of a baby with a … Continue reading “Trachie” life 🙂
Mid-fast update
Yesterday, Zion reached 150 days of life! Thank You Jesus!!! We have made a LOT of progress since initiating our new plan for Zion beginning on Monday. As you can see in my photo below, Zion is getting close to being completely off of all of the initial interventions that were initiated by Omaha - … Continue reading Mid-fast update
Calling a 7-day fast!
Our precious "punkins" I feel as though my mind started clearing the day after we got the sad news about Zion's pulmonary hypertension. That morning my husband and I spoke with the "unfriendly" neonatologist and a nurse practitioner during rounds. Normally there are more people in the room, but not that day. The conversation was … Continue reading Calling a 7-day fast!
A heart ravaged
The other day, the Children's Hospital had a "mini carnival" for the kids. One of the stations set up was for arts and crafts. Eden and I parked there, while daddy and Judah went elsewhere. We ended up making some cute little door hangers for each of the kid's bedrooms. It's been quite a while … Continue reading A heart ravaged
Heaven in a hospital bed
The past few days Zion has continued to have episodes where his oxygen sats will fall low, and stay low for some time before coming back up. Normally the team would use a bolus dose of morphine or Versed to calm him, which in turn help his sats go back up (since he previously had … Continue reading Heaven in a hospital bed
There’s peace in surrender
It's Monday in Omaha. Normally, on a Monday, my goal would be to rush to the hospital first thing in the morning in order to catch any doctors who come by the bedside. The first day of the week is always busy with lots going on. It's sort of an exciting time for movers and … Continue reading There’s peace in surrender
Twists and turns
It's Sunday in Omaha. George and the kids arrived Thursday, and we checked out a local church today. After the trying few days that Zion has had, I definitely needed to be refreshed in the Word and surrounded by the body of Christ. Ever since my Omahappiness post, Zion took a turn for the worst. … Continue reading Twists and turns
Another aborted mission
We waited all day yesterday for ENT to arrive because Zion had a scheduled trach change. The decision was made that he was ready for the next size up trach. I was so excited to have this happen for Zion because I have been wanting to see how he does with a bigger trach for … Continue reading Another aborted mission
Fearfully and Wonderfully ZION 