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Pray for Baby Wren

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Lansing, MI
Pray for Baby Wren

Wren was born 8/16/16. He has been clinically diagnosed with Kabuki, Hlhs, vsd, and others.

06/12/2025

Last day of school today for the kids! Wrens moving to 3rd grade in the fall. He had a great year. We're going to work on a few things this summer to try and aid in him learning how to use a computer/type, keep working on his name and maybe a few other things. Most of all were excited to have him home, and he's excited to play!

06/06/2025

Wren had field day today. He had so much fun!

02/24/2025

I think we're in the clear.

Anyway, this came up in my memories today. If you're curious how the first 5 months of Wrens life went, this was the major things. He had other smaller things happen as well.

02/22/2025

Supposedly Wrens page will be shut down. So if you'd like to keep yup w with him friend request Matt or myself.

😍

02/15/2025

Our boy is still feeling under the weather. We ended up taking him into the er a few days ago because his fever just wouldn't break at 105°. We did swabs and and an xray. Chest looked clear so no pneumonia or anything like that. Swab came back for influenza a. So we're just trying to get him on the other side of this, gosh it's bad. Wrens entire school got shutdown because of the amount of absent teachers, staff and kids. He had a good half of day today, tonight he's got a fever again, and looks run down. Hopefully tomorrow he'll feel a little better. Prayers for him. Matt and I also were lucky enough to get the flu to. It's been a LONG week.

02/08/2025

Our boy is not feeling well, prayers for him please.

02/01/2025

February is Heart Awareness Month. I'm really going to try and post everyday about Heart Disease or something about Wren. I hope you're along for the ride! Let's bring more awareness to Heart Disease!!

Very LONG post

Day 1- Diagnosis
Wren was born 8/16/16 supposedly healthy according to the first nurses that checked him. Matt and Tristan had left to go pick up Wrens carseat, so I was all alone. My nurse had come in to take Wren for his 24 discharge check. I had just tried to feed him and thought it was weird he didn't latch and eat like he had been. So I mentioned that to my nurse, she's said we'll try again when he comes back. So I said ok, and off he went for his check. While he was gone I got dressed and sat and waited. Waited for Matt and Tristan and waited for my baby to come back. It had been over an hour. My nurse came in very discreetly to let me know somethings not right. Matt and Tristan finally got back, and I was sobbing. I told Matt something was wrong, but I didn't know what. Hours and hours, what felt like eternity my nurse and 2 doctors came in. They start telling us, he has a heart condition called HLHS (Hypoplastic left heart syndrome). They immediately placed him on prostaglandin to keep his heart functioning. We immediately had to decide where to send him. We had the option of Detroit (Motts) or Grand Rapids (Helen Devos). Matt quickly chose Devos, and off Matt went to wait for his arrival there. I couldn't be discharged because they mistakenly thought I had mersa. (Never did) I had to take a test before I could be discharged. Obviously it came back negative. I got discharged and matts mom took me immediately up there. Matt waited for HOURS AND HOURS for wren to get there. He had a lot of adventures while waiting for him to get there. By the time I got there he was hooked up to more stuff. Then wouldn't you know, they make us gown and glove because they hadn't been notified that my mersa test came back negative. Anyway, he then had ultrasounds done and more testing done. Most of it came back fine, except he also had an eventration of the diaphragm. Obviously as the years have gone on we've collected other diagnosis as well.

This is his diagnosis story. You have any questions please feel free to ask!

11/11/2024

Hes asleep.... in his own bed! So proud of him. I know he won't be there all night, that's OK though. Baby steps. It's taken since moved in to get him in there without me. Bittersweet moment 😢😢😭

11/09/2024

Oh, Christmas morning, you'll be here before we know it. Time slowdown please

09/28/2024

Happy to our boy!!! He's the best kid! We love you buddy!!!

09/18/2024

First- Happy growth awareness week.
Second- we had a visit with Wrens Neurosurgeon today. He had a sedated MRI the end of last year to see if his Chiari had shrank or grown. There has been no change! He doesn't have to be seen by him for TWO years! Eeeekkkk!!!!

08/21/2024

Our boy started 2nd grade today. Sis started 9th!

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Lansing, MI

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+15174204553

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Wrens Journey Through CHD

My name is Wren, I was born August 16th, 2016. I’ve had a so many challenges through my short life so far, but I am such a fighter.

The day I was born mom and dad were told I was in perfect health. EEEEKKK, they were so excited to enjoy an amazing new adventure as a family of 5! 24 short hours later that all changed. A diagnosis of HLHS, VSD and CDH. I had 2 heart surgeries within the first 5 months of my life, as well as two surgeries on my diaphragm. I had more diagnoses along the way up to this point. My other diagnoses include FTT, dysphagia, G-tube dependent, feeding intolerance, globally delayed, short stature, poor weight gain, Kabuki Syndrome, SPD, speech apraxia and Hypotonia (I think that is all). Even with all the difficulties, and challenges Wren has faced, he continues to be so happy (majority of the time) and shows everyone life isn’t to be taken for granted.

Now we enjoy a our adventure of 5 through the eyes of a more precious life. A life of learning about all the fun quirks that come along with rocking Kabuki Syndrome. All because of one tiny boy who started rocking this world in 2016!!!

#Growingupkabuki #Prayforbabywren #RockingredforWren #WrenStrong