Re-Post…
Come Join Us!!!
This Is My “1st Father’s Day”…
And My Lil’ Man Has Made This Day So Amazing!!!
And… Happy Father’s Day To All The RainCross SuperDads Out There…
Not To Take Anything Away From Father’s Day… But… I/We Wanted To Change It Up A Little Bit For Today’s Post…
We Wanted To Invite You To A Future RainCross Event To Support Not Just Ryker… But… Babies… Families All Over…
That Being Said…
From Danielley…
1 in a 100 babies born are born with a congenital heart defect (CHD)
. 25% of those are born with what is considered a Critical Congenital Heart Defect. This means they will need to undergo open heart surgery within their first year of life.
This quickly became Mando’s and my reality 24 hours after Ryker was born.
Our son, Ryker, was born with not 1, not 2, not 3, not 4, or 5 but 6 heart defects.
He has what is called CrissCross Upstairs Downstairs Ventricles which then led to the other 5 defects in order for his heart to compensate for it.
I vividly remember the nurse taking him when he was 24 hours old to complete the CCHD screening.
She brought him back and said… “We will need to repeat it in an hour. His numbers weren’t aligned but we’re going to let him calm down.”
I was naive and didn’t think anything of it. She came back an hour later, at 2am, and took him again to repeat the CCHD screening.
She came back in with him and I asked how it went. As she was exiting the room she said… “Not Good.”
Both Mando and I were half asleep like huh!?!
She came right back in and said… “I have to take him to the NICU. One of you can come with me.”
I quickly put on a robe and shuffled down the hall as she wheeled Ryker to the NICU.
Still, I was naive. The NICU doctor listened to his heart and told me he heard a murmur but that some babies are born with murmurs that go away within the first day or so of life. They would just monitor him for now and listen to his heart later in the day.
Unfortunately, that murmur never went away. I was still naive as I sat there and comforted Ryker as they completed his first (of many) echo.
The reality and severity didn’t sink in until Mando bursted through our hospital door yelling… “He has to be transferred. They can’t handle him here.”
For those of you who know Mando… He’s a soft spoken man… So when he yells… You better pay attention…
At this time RCH had diagnosed him with only one defect, DORV. We both sat and held Ryker until the Loma Linda Transport Team came to transport him. He was admitted to Loma Linda’s NICU because their Cardiac ICU did not have any available beds at the time and they were unsure of what was going on with his heart so they wanted to complete an echo for themselves. One echo turned into 3 before they could properly diagnose him….
CrissCross, DORV, Coarctation of the Aorta, Transposition of the Great Arteries, VSD, and ASD.
I remember Mando and I having to sneak into a conference room to meet with the cardiologist for him to tell us the diagnosis as COVID restrictions would not allow both parents to be in the hospital (yes, the entire hospital) at the same time.
For 8 days Ryker stayed in LL’s NICU. On October 5th I, by myself, met with the surgeon for him to go over details and risks of the surgery and give consent for surgery the next day. Mando was on speaker phone.
On October 6th, 2020, Ryker underwent his Norwood Procedure.
They reconstructed his aorta and placed a BT shunt in that would allow blood to flow to his pulmonary artery. We knew another surgery was inevitable as the shunt was a temporary solution which he would eventually outgrow. But it allowed time for his heart to grow and get stronger.
The next 3 weeks we switched back and forth staying bedside with Ryker.
We were told 2 times it was discharge day but something would always come up the morning of…infection in his incision and not gaining proper weight.
Finally, October 27th, his one month birthday, we were told we could finally take him home.
The next 7 months brought lots of doctor appointments and two additional procedures that required Ryker to go under general anesthesia.
The cardiac team was still unsure of how to proceed with the next step until April.
We had continued to be hopeful but in April we were told we would need to go the single ventricle route.
This meant they would not close the holes in his ventricle and atrial wall and instead use these holes to have his heart function as one pump.
We went to CHLA and got a second opinion and the surgeon agreed this was the best course.
So on May 17th Ryker underwent his 2nd open heart surgery , the Glenn Procedure, where they removed his shunt and connected his Superior Vena Cava to his Pulmonary Artery.
Unfortunately, this is not his last surgery…
When he is around 2-3 years old he will undergo his third (and pray final) surgery where they will complete his Fontan Anatomy (single ventricle).
So why should you join us on August 14th?
Because only 15-20% of those born with CHD know the cause.
Because CHD is as common as Autism and speaking for myself had never heard of it before Ryker.
Because CHD is the most common cause of infant death due to birth defects.
Because, sadly, research for CHD is terribly underfunded. There have been huge advancements within the last few decades regarding CHD but so much more still needs to be done.
And, because there are far too many similar stories; far too many parents handing their 9 day old to strangers trusting them with their child’s life; and far too many babies fighting one of the toughest battles imaginable…
So, come spend Saturday, August 14th, with us as we Walk/Run a 5K to raise awareness for CHD.
And yes, the Cutest, Strongest Little Boy will be leading the way…Well… Pushed in a stroller.
This will take place at our home… Details and address will be up on The WhiteBoard… And Yes… There will be a BBQ afterwards!!!
3…2…1…GO!!!
Danielley
https://runsignup.com/Race/WI/Virtual/MilwaukeesPCHAHeartandSole5KRunWalk
Make sure you sign up under the Team “Ryker Strong”
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ALRIGHT… HERE WE GO!!!
Active Rest Day… Get Out & Do Something!!!
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Mando
RainCrossStrengthandConditioning 