Jays Journey.New Beginnings

08/31/2026

28 years ago our son, Jay was born. That in itself was a miracle to us. We got to hold him for a few precious moments without any tubes, wires or scars before he was taken away and put into the NICU at UICH until his first open heart surgery at 3 days old. So many things I could write to retell his story, but not today…..today we celebrate that he is still with us, proving drs wrong again and again, and living life the best he can.
Happy happy 28 years of loving you Jay. I hope we get many many more!
If anyone would like to help him celebrate you can send a few bucks to my Venmo or cash app account and I can transfer it to him so maybe he can purchase a little something he’d like. If not, give him a big happy birthday shout out today!

07/26/2026

Come see us today or help with a donation to the Venmo or cash app pictured here! You will never know how much we appreciate the help and support from all of you! It really humbles a person having to ask for help but as a parent, we will do anything we can to help our child. Thank you again

07/09/2026

07/08/2026

Today’s heart catheter showed good/bad news. Jays pressures in his heart dropped quite a bit from his last catheter so his heart function is holding steady and doing “good”. But that makes it harder to get bumped higher in the list and his leg swelling (it’s huge again) is because of his liver failure which is caused from his heart failure and cannot be cured until he gets a new liver. But he’s still not “sick” enough. UGH! These guidelines are so incredibly black and white and written in stone. His drs out here are trying to discuss options on what to do to try to get him listed high priority because he cannot keep working or walking comfortably with that leg swelling like it is. We are seeing both his cardiologist out here in Omaha tomorrow so we will hopefully get a better update on the next stage of treatment for Jay. Please pray we can get some results on how to help his leg swelling stay down
On the plus side, he got to eat supper at his favorite Omaha spot…..Cracker Barrel Old Country Store

07/07/2026

Wish Jay the best of luck and positive thoughts and prayers as he undergoes this heart procedure today in Omaha, Ne.

06/09/2026

Jay got released today! He’s quite a bit lighter with alot of the fluid off. We were told if he starts to retain fluid like that again we will definitely be making a trip to Nebraska for admission.
We will be keeping in close contact with Nebraska from now u til he has his heart catheter in July. Thank you for all the prayers and positive thoughts.
And big thanks to his sisters who spoiled him with food and tea, his grandma who spoils him all the time and his best buddies for keeping him occupied so he wasn’t so bored all day!

06/07/2026

They told you your child needs a heart cath.
And your stomach dropped.
Because you heard the word "heart" and your brain went straight to the worst place it could go.
Take a breath. Let us explain this.
A heart catheterization is not open heart surgery. They do not open the chest. They do not stop the heart. They thread a thin tube through a blood vessel — usually in the leg, neck, or arm — and guide it all the way to the heart using X-ray imaging.
Your child is asleep. Your child is not in pain.
And what happens inside that cath lab can change everything.
Doctors can see pressures inside the heart and lungs. They can check oxygen levels. They can look at blood flow. They can get detailed pictures of structures that no outside scan can fully show.
But it doesn't stop at diagnosing.
They can open narrowed valves. Place stents. Close holes. Create or enlarge openings between chambers when the heart needs a different path to survive.
All of it. Through a blood vessel.
No open chest.
No cracked sternum.
A completely different path to the same goal.
And for CHD kids — this isn't always a one-time thing.
Many heart children have multiple caths throughout their entire childhood. Because their heart changes as they grow. Because caths can delay surgery. Replace surgery. Plan surgery. Monitor what's shifting before it becomes a crisis.
It is a powerful tool.
It is not something to fear.
It is doctors fighting for your child in one of the most precise ways medicine can offer.
Your child is brave.
Your child is strong.
And now you know exactly what's happening in that room.
Copyright belongs to invisible warriors

06/05/2026

After much back and forth between the Drs in Nebraska and drs here in Dubuque, it’s been decided Jay can stay here in the hospital and get IV treatments to get rid of some of this excess fluid in his leg. They’re hesitant to try lymphatic massages or treatment for it because oh his heart failure and the reason behind his lymphatic issues is his PLE and nothing can cure that except a heart transplant.
The drs think the swelling is related to protein-losing enteropathy (PLE) rather than a blocked lymphatic vessel so they feel lymphatic massage may not provide much benefit and could potentially cause problems if he is already dealing with fluid overload from his heart condition.

PLE is often seen in people with complex congenital heart disease, especially after procedures such as the Fontan procedure. When protein levels in the blood drop, fluid can leak into tissues and cause swelling. In that situation, the underlying issue is low protein and circulation/lymphatic dysfunction rather than a simple blockage that massage can “drain.”

So it sounds like he will be at Finley hospital here in Dubuque at least through tomorrow or Sunday.

06/04/2026

That CHD is not a “heart condition” in the simple sense. It is a lifetime war.
It does not end when the cast comes off.
It does not end when the surgery is over.
It does not end when the child smiles.
You cannot always see it.
That does not make it small.
That does not make it less real.
The hospital stay is only one chapter.
The fear after discharge is another.
The scans.
The meds.
The sleepless nights.
The “is this normal?”
The silent panic no one claps for.
What people need to understand is this.
CHD families are not asking for pity.
We are asking to be seen.
To be believed.
To not have our hardest days minimized because our child is breathing.
This is our life forever.