Lukas Open Heart Surgery

Campaign Created by: Jessica Hagenhoff

The funds from this campaign will be received by Jessica Hagenhoff .

Raised: USD $ 2,875

Lukas was born at 35 weeks with Down syndrome and has dealt with many health challenges in his short life, including surgery at 3 days old to fix a bowel issue, surgery again at 8 weeks old to place a g-tube, and an 11 week NICU stay before finally coming home to meet family including his big sister and brother. This summer he will have open heart surgery to repair two holes in his heart.

He sees a chiropractor, speech therapist, PT and OT, a dietician and has several other appointments with endocrinology, ENT, cardiology, gi doctors, pulmonology, post surgery doctors and then his primary pediatrician. As a result, I haven't been unable to work but I've still been paying rent each month in the hopes of eventually returning to my business. 

All of the medical bills are adding up, and while we tend to not be ones to ask for help, I prayed over it and decided this is something worthy of asking help with. My hope is that this will alleviate some of the financial stress we are facing so that we can focus on helping Lukas continue to grow and thrive and keep as much of a normal going for Abigail and Jensen. 


Surgery day
August 19, 2022
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Today was the day. My anxiety has been so high and I've done my best to manage it. I can finally breath a sigh of relief as he had his surgery this morning and did great! 

He is still sleeping off his sedation medications but his stats look great. 

Hopefully soon he'll wake up and start breathing on his own so they can remove his breathing tube. Right now the goal is to keep him comfortable though so if he's not ready yet that is fine.

Thank you so much for all the love, support and prayers. We aren't out of the woods yet but with this surgery behind us we can figure out if/when we'll move towards getting his cleft and oral ties fixed so he can eat by mouth.

Hugs and love!

Update #1
August 8, 2022
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Hi everyone, we have appreciated and continue to appreciate all of the support,  prayers and love we have received. 

Lukas is growing and finding his personality! Oh, and he's the cutest little guy!

Surgery is just under 2 weeks away. When I stop and think about it , I am terrified.  Life keeps us busy so luckily I'm not sitting around thinking deeply about it, although it's always on my mind.

We recently got the official diagnosis that on top of everything else that he has been dealing with, he also has a partial cleft palette.  This is something we have suspected for the past 4 months. So we are happy we finally have an official diagnosis.  We go back to the ENT in November where they will scoop him to see the severity of the cleft and then determine the treatment plan. 

So continued prayers for his upcoming heart surgery but also prayers we can figure something out with his cleft which will hopefully help us with his ability to eat by mouth and get rid of his gtube sooner than later.

Thank you again so so so much! 


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