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. I was truly in shock yesterday. God truly can make a way when there is no way. Thank You Jesus for opening this door for Zion!

We thank everyone who joined us in our fast for Zion. We believe God has blessed our fight for Zion during that time with lots of answered prayers. Zion successfully got off of all of the drips he was on. Zion had his BEST WEEK EVER in Omaha as far as his overall wellbeing. Zion experienced multiple dangerously low oxygen desaturations where he amazingly remained calm and peaceful, which confounded the entire medical team to the glory of God. Zion’s bowel habits greatly improved as well. And our biggest prayer request was answered – God made a way for Zion to come home!

So much has happened here in Omaha that it’s hard to limit it all to a blog post. It makes me think of John 21:25. God has moved in so many ways since being here that it’s overwhelming to think about it. I do believe we came out here for some very specific purposes, even though it ultimately wasn’t for the purpose we initially intended. The spiritual battle against our Trisomy babies is real and has been incredibly intense. Maybe I will write more about it one day. But one thing I know for sure. God puts babies with “defects”, like Zion, on the Earth to display His glory.

And His disciples asked Him, saying, “Rabbi, who sinned, this man or his parents, that he was born blind?”
Jesus answered, “Neither this man nor his parents sinned, but that the works of God should be revealed in him.

John 9:2,3

And that is exactly what these babies have done in Omaha, by defying the odds and persevering, time and time again. The enemy wants nothing more than to stamp out the lives of these little beings that proclaim the glory of their Creator. But thanks be to God that He is greater, and protects and covers them in His everlasting love – this has been made abundantly clear to me.

We have been gone for over one month. We are so ready to come home and get back into a normal routine with our children. It’s been hard at times, but overwhelmingly God’s grace has been upon us. People often assume that our journey is very stressful and trying. It has been at points, but believe me when I tell you that overwhelmingly it hasn’t! Why? Because “the prayers of the righteous availeth MUCH”. Your prayers have been so powerful and effective in showering us with the grace we needed every day to overcome what was put in front of us. THANK YOU!

Tomorrow morning Zion and I will fly to Cincinnati Children’s hospital. After we leave, George and the kids will drive home from Omaha, with my dad (who came out to Omaha to finally get to hold his grandson). Once in Cincinnati, we hope to expedite Zion coming home on hospice care. Since Zion has reached the end of his medical interventions, we want him to enjoy the rest of his days with his family at home, and we are hoping his days will be longer than we can imagine.

We have just a couple prayer requests at this point. First, Zion is unfortunately very sick as I write this. Since my last post, he acquired a few infections (in his trach, in his urine, in his PICC and arterial lines, and most recently he now has rhinovirus). Zion has had infections before, but never this many at once. Infections always make it harder for Zion to oxygenate his body, so we have had lots of moments the past few days where Zion’s oxygen has dipped dangerously low (even down to 0 at times) – but God has continued to sustain him despite. But seeing him have coughing fits that turn him purple and watching him in respiratory distress at times has been very, very hard. We have experienced lots of pressure from the medical team to transition him to comfort care to end his life, but we haven’t felt peace in doing that just yet as we hope to see him through these infections. Please beg God for His mercy to be upon Zion so that he can breathe easier. Beg God to heal these infections. And we ask that God would protect Zion on this flight since we understand that it is high risk for a very sick baby to fly. They will be paralyzing Zion again tomorrow morning to keep him as calm as possible for the flight. Pray that Zion has peace while under the effects of this medication.

Please pray God would go before us and prepare our way to bring Zion home. Pray that we can understand hospice care, and how home nursing care might or might not be a part of that. Pray that we won’t have delays from the hospital in getting him home, but that it would be expedited. We ask for prayer that George and I, and the kids, would be prepared in our hearts to bring our son home. And that we would also make the necessary adjustments to our home to make Zion’s arrival smooth.

Lastly, please pray over all of our travels home (George, the kids and my dad, also my sister Vanessa, and Zion and I).

We truly feel like we have been through the furnace of affliction, but we are still standing strong thanks to all of your prayers…

When you pass through the waters, I will be with you; and when you go through the rivers, they will not overwhelm you. When you walk through the fire, you will not be scorched, and the flames will not set you ablaze.

Isaiah 43:2

We love you all so much. If Zion comes home, God willing, we plan to have the biggest “kill the fatted calf” party he could ever imagine. Enjoy the rest of the photos I have as we close out this chapter in Omaha. We want to say THANK YOU to everyone in Omaha for caring for our son in the best way that you knew how.

Enjoying our Sunday at a local church in Omaha
5 months old!!!
“snuggle resuscitation”
Not so sure about his Boppy today
More gifts for our kiddos from loving friends!
Enjoying some creative times at Joslyn Art Museum
Grandpa with his namesake – Zion John
Zion’s first time being on his tummy since he was a month and a half old! He LOVED it.
Auntie Vanessa laying eyes on Zion for the first time in a few months
Zion’s oxygen went up 20 points shortly after Auntie held him
Zion is our Tiny Superhero!

3 thoughts on “Homebound!!!

  1. So happy that y’all are able to bring Zion home!!! Continuing prayers for adjustment, for comfort, for everything Father knows you all need. Zion may surprise everyone. GOD created us to be amazingly adaptive to changes in our environment, and I believe Zion’s normal may be far different from other’s as Father lifts him up and Carrie’s him for His purpose and for His glory. Keeping you all on my heart and fervently praying. ♥️🙏🙏🙏☝️

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  2. Beautiful! I wish I had more time with Kinsley. I wish I had some pictures like yours but the breathing tube hindered things a lot but I got some special pictures. Zion is a true fighter! I love your story.

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