Harlow Grace’s Story

Site created on July 29, 2020

God has been intertwined in Harlow's life before we had even imagined her...2020 has been a year of curve balls, as we are all very aware of. Derek and I had planned to focus on racing triathlons and to try and grow our family next year. Well, as things progressed and were cancelled, we received this strong sense that we should try now and well it happened - fast!

We have been overjoyed ever since and have loved watching Makenzie, who is almost 3, already step into her big sister shoes. Little miss Harlow did make her presence known throughout the first trimester and some, but everything seemed to be moving forward it should be.Then on Monday, July 27th we had our 20 week ultrasound. Harlow wasn't necessarily cooperating, but we were soaking up seeing her move around. For some reason, we left with an uneasy feeling and just 3 hours later it was confirmed why.

Harlow Grace has been diagnosed with Spina Bifida with myelomeningocele seen at L4/ L5. Basically, her lower spine did not close all the way, leaving part of her spinal cord fully exposed.

We canNOT thank you enough for your continual thoughts, prayers and love as we navigate through advocating for our warrior, Harlow Grace!! Now we pray hard for God to move mountains and knit her spine back together! ❤️

Newest Update

Journal entry by Madison Vlietstra

Today, we were up bright and early. Harlow at 5:20 to be exact and then she continued to chit chat the whole way with Derek and I to UofM. 🤣

It was a morning full of images and tests, specially for her bladder and kidneys. Harlow was a rockstar and huge shout-out to Child Life Services, who brought in a bag full of toys and just loved on and entertained Harlow through it all. 

After, we met with the urologist. Since the first phone call with him, we have had a sense of peace in Harlow’s urological care and plan. This doctor introduced us to cathing, during an uncertain time and now we can’t imagine life before. Then today, we were introduced to Harlow’s next step... 

Harlow’s left kidney reflux hasn’t improved and all focus is protecting her kidneys. Rightfully so - for the all the adventures ahead! 

On December 13, Harlow will be having Ureteral Reimplant surgery to fix the tube that connects the bladder to her left kidney to ultimately stop urine from backing up into the kidney. {Her right kidney is perfectly healthy 🙌🏼.}

God is good always! Harlow continues to be such a joy, while pushing through obstacles. Nothing has or will stop her. She trips and just bounces right back up. Praise the Lord for her love, courage and determination. And THANK YOU for all your continued prayers!!
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