Kayden's Journey

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Kayden's Journey

Kayden's Journey to a New Heart ❣️
Welcome to our little family's crazy adventure! Thank you so much for your support! We're happy you're here!

02/26/2026

Enjoy the show!! 🥁
Kayden's first time experiencing the of 'pots & pans'!! 🍳
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p.s. (PT friends - I KNOW I KNOW!! 🧎‍♂️ we're working on it 😩) lol 🧘‍♂️

02/17/2026

Went on our first walk NOT to/in the hospital!! It was lovely!! ❄️

02/08/2026

🏡 Mommy & Kayden Life Update:

Sooooo . . . due to some unforeseen circumstances, concerns & technical difficulties at our house in Vineland, we have regrouped and relocated Kayden's first new "big boy home" outside of the hispital world up to Hamilton, New Jersey in with my parents (Kayden's Nana & Pop!)

Although this is not how I had pictured "going home" to look after a 2 year hiatus from my home in Vineland ... such is life 🤷🏽‍♀️ With the help of my village that I am SO insanely grateful to have, we are all moved out of the Ronald McDonald House with both Kayden and my 23 months worth of stuff -- and today we're starting to work on getting our new normal figured out here, our new routine established and of course the first thing on the agenda is getting Kayden's second new big boy bedroom decorated 🤦🏽‍♀️ lol

Stay tuned for the video of Kayden ringing the good news bell before we officially walked out the doors of the Ronald McDonald House for the final time!¡ 🔔

01/13/2026

We had our 6 month check-up today!!!

🫶🏽 6 whole months! His echo looked great, his EKG looked great, his labs looked phenomenal and if his antibody values come back lower then last month, he gets to start weaning off the steroids!!! One very happy mama, one very happy jumping bean (aka Kayden) and one very happy, healthy heart! ❤ 3 more days until our actual 6-month 💝

01/10/2026

. . . . . just omg . . . . . . . . need I say more?!? 😍

Kids Kuts of Wilmington -- SO highly recommend! ⭐️⭐️⭐️⭐️⭐️
Last time Kayden sat in the red car for his haircut 🏎, and this time he got to drive the Batmobile! 💈💇🏼‍♂️

01/06/2026

Kidnapped this guy from 2B last night (jk, he was discharged). Mirulax on hand to take care of his very backed up little belly and a stronger antibiotic to try and officially kick this ear infection that he's had since the beginning of December.

(pictured) 📸 A very relieved Kayden to see that Mommy was getting us dinner (and a banana 🍌) and holding my car keys meaning he was coming with me ❤ The joy on his face when we walked back into his room and he saw all his toys and things was priceless.
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2️⃣🅱️
((whenever I mention 2B, I'm referring to the cardiac step-down unit where Kayden will likely go for ANY type of hospitalization, no matter the reason, due to them knowing him best pre & post transplant))

01/05/2026

4am yesterday morning, sweet baby boy woke up and pretty much immediately I could tell something wasn't right. He wasn't himself and in between breathing that seemed "off", he was whimpering and crying in pain which is not like him.

I haven't been very vocal about the difficult parts of navigating day to day life right now. I REALLY really do try my hardest to find the positive in every situation and not harp on the blah parts of all this - but yesterday morning, I couldn't see the silver lining and I sat there almost frozen while my brain tried to decide if I could/should try to troubleshoot what was going on at home, or take him into the ED. I was hit right then with the reality that having a child with medical needs requires you to have doctor level knowledge and you're asked/required to do doctor-like things on a regular basis -- but in that moment, I was not his doctor, not his nurse . . . I was just Kayden's mom. My brain couldn't do the caregiver thing while I held him crying in agony for some reason and so to the hospital we went. The panic, PTSD, etc. that sets in when he's not acting himself is paralyzing and the frustration of him not being able to verbalize what is hurting or what is wrong is frustrating beyong words. How quickly my nervous system slipped right back into survival mode and how the fear never truly leaves, no matter how long of a good stretch you've had. Our reality is that hospital runs and admissions will be a regular part of our future. Luckily, this one resulted in a pretty nasty double ear infection along with a very constipated belly needing some intervention. But our heart, that thing is just ticking away healthy as ever 🙏 VERY grateful this admission was just for monitoring while we got him back to baseline before discharge, which should happen this afternoon.

So over the last few months I have learned to give myself grace. Yes I am asked to do doctor-like things and carry doctor level knowledge to take care of my son at home, but sometimes it's okay if I am just Kayden's Mom and need to ask for help.

01/01/2026

New Years Eve Medical Mom Thoughts: Can a year forever conclude with both labels of the "worst year" and the "best year" of our lives? How could such a terrible thing happen . . . yet so many unbelievably amazing things happened all jumbled together in the span of 365 days? To think about them coexisting is a strange feeling; 2025 will truly wrap up as the worst and the best.

Then somehow, mixed in with all the bad and all the good, there are these moments of intense pride that stick out like a sore thumb. Pride towards myself for surviving this year; for keeping it together after Kayden's stroke and never losing faith that my son would find his way back to us despite the seriousness of it; keeping up the hope that this stroke will one day be a thing of the past . . that this is just a chapter, not the whole story. Proud of myself for placing my entire world into the hands of the surgeons, knowing they would take care of my baby. Proud of myself for fighting through the fear of moving out of the CICU, then moving out of the hospital altogether.

And then there are a few too many moments to count of how proud I have been of my son over this last year. For waking up every morning and doing the damn thing despite being on life-support, despite bouts of fighting off sepsis, central line infections, fluid balance issues. For surviving his stroke, for surviving heart failure, for surviving transplant surgery, all before his 3rd birthday. And then all the moments during his therapy sessions - watching him learn to roll again, to sit again, to stand again, to take off in his walker walking with BOTH feet, seeing the freedom on his face when he independently does something without help. Watching him learn to make sounds again, to drink from a cup again, to eat his favorite foods again. I can not find a word to accurately describe how proud I am of my child. He has become MY strength & MY motivation. On days I'm too tired to do anything . . there he is bouncing, smiling, talking away reaching for me. 'Mum' he calls me. ❤

So despite the 'bad' that this year brought, I'll continue to push myself to focus on the good that came from it:
- The friendships I built with staff that truly became family -- for almost 2 years they've held me up on days I couldn't stand and they've loved Kayden like their own.
- The resilience I saw within my baby boy, not realizing it was possible to actually look UP to someone only 3 feet tall!
- The test of my marriage . . over 22 months of living apart after 16 years of living together; but here we are, celebrating New Years together once again, but with a healthy baby boy this time around! 😉

Happy New Year's to everyone in Kayden's Support Squad. Thank you for continuing to be so invested in Kayden's Journey and cheering him on along the way! I assure you, I'm just as excited to see what adventures this little one has in store for us in 2026!

📸 (Pictured is Kayden's first time ever testing out his new walker that we got at the end of November, taking his first few steps without anyone holding him from behind . . . I think his smile says it all!) 🥂

12/26/2025

Santa came and it was wonderful . . but we got everything we've ever wanted in July this year. Everything else was just a bonus ❤

Merry Christmas from Kayden and his new heart 🫀
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12/22/2025

Someone was VERY excited to see his favorite character downstairs after his therapy appointments thismorning!!! 🍪🍪

11/10/2025

2 straight minutes of Kayden getting out his zoomies before we do lights out & iPad off for bedtime!
. . and yes, he's repeatedly rewinding to the beginning of the video for me to say the answer to Blue's Clues! Pretty sure there have been times I've repeated that damn phrase over 50 times back to back because it makes him so happy every time! 🥰😄

Address

1901 Rockland Road ROOM 320
Wilmington, DE
19803

Website

https://gofund.me/8338dd60

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