Heart Of A Champ

Before surgery day💪🏼
pre-op tasks✅
Pre-op treat ✅
Rest✅
IHOP✅

Today was a great day to just be together as a family🥹 Tomorrow is a big day one we awaited for yet dreaded do much, so we ask that everyone just continue to keep not only our son in your prayers but also his sister and us as well🤍

Siblings

Today we give all the attention to Marzia! Our heart warriors sister and only sibling!

When it comes to being a sibling to someone with a heart defect or any disabled for that matter its truly different. We as parents have noticed so much now that Pierce has been his healthiest self. The one major realization we had was the lack of intimate interactions with our daughter. Now im talking interactions outside the normal day to day tasks, hugs and I love yous. Was it an easy realization, absolutely not. In these situations many times we as parents dont always notice the areas where we are lacking, because we have unexpectedly taken on so many challenges already the fight or flight mode stay on and then your in auto pilot.

Just like us parents, Marzia and many other siblings have to take on many unexpected challenges. For Zia she had to learn to love her brother in a fragile way. From birth it was “Be careful with brothers cords, watch out for brothers oxygen, careful with your brothers arms, we wont be going home we have to stay at the hospital again.” As his sibling she saw her brother fighting a fight that she couldn’t and in her own ways she made his fight hers to! By just watching me she knew how to hook up his feeding tube and work the machine, she would ask if it was time for his meds (she was always in time) she would ask to carry his oxygen, and so much more. With out ever being asked or told she saw her brother living a life that wasnt normal and made sure he wasnt treated differently.

She pushed our boundaries when it came to play time and showed us the capabilities our son had. When it came to being her brothers big sister she knew she was going to do it awesome and make him part of everything! She talked about her brothers any chance she got and still will she tells people about his heart and that he is special because his heart is different. These were all the moments we would look at and see so much joy because our daughter was being an amazing big sister just because she wanted and she loved her brother so much!

In those moments we didn’t realize that she was doing all those things not only because she loved her brother but because thats all we were doing as a family. It was learning how to care for our son and that was it. So in many moments at that time we were cherishing them yes but now as reflections come we begin to realize more beyond those moments. We didnt build space big enough for her to know anything different than to just adapt to him. So yeah forsure it was a hard realization but its what allowed us to become more aware of not just our sons health but also our daughters feelings and emotions. Its allowed a safe space for communication to be created between us the parents and our daughter. We have learned to cherish alone time with each child individually without feeling guilty now through this entire experience. When facing the facts that medically needy children just require more attention outside the normal, you understand that your other children need even more attention than they had before as well. A lovely woman in my life told me “You will never find time you need to make time” so we now make time to show our love to our children in their own individual unique ways.

Siblings are truly something special and when you meet a sibling of a CHD warrior you will know that they are some of the biggest warriors in their fight also💙❤️

Surgery/ Meds
No preparation in the world could get you ready for what you witness as a parent when it comes to CHD babies.

Like many other families, the moment our baby was diagnosed with his CHD; we immediately were shown photos from results, diagrams of what his heart could look like and what felt like an endless consultation of what our future would look like moving forward after his birth.

With every HypoPlastic diagnosis comes the process of 3 invasive open heart surgeries. All surgeries are needed and required to ensure the better functionality of their hearts in the future. The Norwood, the Glenn and the Fontan.

The Norwood being the first of the surgeries to take place, can happen within the first moments of birth to just a few days.

❤️Stage 1: BT Shunt/Norwood Procedure (First few days/weeks of life): A shunt or similar procedure is used to establish blood flow to the lungs, as the right ventricle is too small or weak. This ensures survival, though the child remains cyanotic (bluish skin).

Inbetween this stage we were sent home taught how to give our son shots in his legs. These were lovanox shots given to him in his tiny little thighs twice a day. Lovanox was used as a blood thinner to help the blood flow through his shunt.

The Glenn which is the second of surgeries takes place within 4-6 months on birth. Now our son was hospitalized for 62 days before being sent home, where we stood for just a month. Then off to surgery day all over again.

💙Stage 2: Glenn Procedure (4 to 6 Months): This surgery connects the superior vena cava (upper body vein) directly to the pulmonary artery, allowing poor oxygen blood from the upper body to flow to the lungs without passing through the heart.

At this point we reached what felt like the ultimate mountain climbed. Hospitalized for an amazing 11 days after he received the Hemi-Fontan (a next step up from the Glenn) and sent home shortly after. Only to have to rush our son back to Children’s Hospital via helicopter. This took place several times, honestly lost track once it was the 6th time and we were getting no answers. Meanwhile our son was having chest tubes inserted into his lungs to drain several ounces of fluid that had kept accumulating.

He then developed severe Chylothorax, which was the fluid accumulation around the spaces of his lungs. Though after the second surgery our son’s heart function was doing amazing we were battling with the results of his new added diagnosis. This lead to not only a feeding tube needing to be inserted but also an increase in medication, which meant we now not only had to remember times and amounts to distribute 3 meds but 7.

Those 7 medications continued on for that year of his life. During that year he was growing and his heart only became better resulting in the decline of his medication needed. He now only takes baby aspirin needed as we approach his final surgery.

Come February 25 Champ will now enter into his final stage. We are as ready as can be and extremely confident in knowing our son will do what he has always done. Fight the strongest fight.
❤️Stage 3: Fontan Procedure (1.5 to 3 Years): The final stage connects the inferior vena cava (lower body vein) to the pulmonary artery. This completes the redirection of deoxygenated blood directly to the lungs, allowing the single functioning left ventricle to pump only oxygenated blood to the body.

Diagnosis Day

As mentioned, receiving the diagnosis of any heart defect can happen before birth, after birth, or even long after.

For our champ, we walked into the most devastating pregnancy journey we never expected, starting at just 9 weeks prenatal. What we imagined would be a beautifully cherished moment very quickly became a scary reality filled with unknowns.

During that ultrasound, the sonographer paused, turned the screen away from us, and brought in the main doctor. We were told our son may not make it and based off a single image, termination was suggested.

At only 9 weeks, we looked at the image of our baby. When most parents see their whole baby developing, what we saw was only part of him. What looked like a “black hole” seemed to invade his entire tiny body, leaving only an outline.

Termination was never an option for us. So we asked every question we could and moved forward, officially labeled as a high-risk pregnancy. That began what would become the most mentally and physically draining season of both my life and my husband’s.

We began seeing our OBGYN one week, then a specialist the next to ensure my body was doing okay, followed by a fetal specialist the week after. Appointment after appointment, there was still no clear diagnosis yet we continued to feel heavily influenced to terminate our baby.

Every visit became gut-wrenching: the unknown answers, the pressure, and learning how to navigate emotions that so few people talk about.

Then we reached week 24 of pregnancy.

Twenty-two weeks of high-risk pregnancy had gone by. Although we were constantly told our baby might not make it, and that miscarriage was still a possibility, we continued living.

We celebrated our son’s gender reveal, cherished time with our daughter before she was no longer our only child, and learned to enjoy every moment of what felt like it could be ripped away from us.

At 24 weeks, we approached one of our major appointments one that finally brought clarity.

Diagnosis Day…

Single Ventricle.
Tricuspid Atresia.
Hypoplastic Right Heart Syndrome.

After several prenatal appointments, scans, and blood draws, they laid out a diagram of a normal heart and then one showing how our son’s heart was developing.

They explained how it would impact his life as a newborn and as he grows, the effects it has on families, and one last time the possibility of termination.

We sat there overwhelmed with emotion. In the same conversation, we were told our son could have a fairly normal birth, yet the unknowns after birth remained heavy.

For an extra hour, we spoke with one of the hospital’s cardiology directors, who explained in depth what the rest of the pregnancy would look like, what delivery would involve, and what to expect after birth.

There was so much to process.

But all we knew was this: our son had been fighting since we first saw his tiny heartbeat at 6 weeks prenatal.

And if we chose to keep fighting with him and for him… he would make it.

With slightly lighter hearts, we drove the two hours back home and allowed ourselves to keep learning how to move forward.

💙 What is Tricuspid Atresia?

Tricuspid atresia means:
❤️The tricuspid valve (the valve between the right atrium and right ventricle) is missing or closed
💙Because of that, blood cannot flow into the right ventricle

So the right ventricle doesn’t get used and it stays very small.

This is one of the main causes of a single ventricle heart.

💙 What is Hypoplastic Right Heart Syndrome (HRHS)?

Hypoplastic means underdeveloped.

In HRHS:
❤️The right ventricle is too small
💙The tricuspid valve and pulmonary valve may also be abnormal
❤️The heart cannot pump blood normally to the lungs

💙 What Does “Single Ventricle” Mean?

A normal heart has two pumping chambers:
❤️Right ventricle → pumps blood to the lungs
💙Left ventricle → pumps blood to the body

In single ventricle conditions:
❤️Only one ventricle does most or all the pumping
💙The heart has to work much harder

This is why tricuspid atresia + HRHS are considered single ventricle defects.

We wear Red not just to raise awareness but to declare hope.
Hope that God is working in every detail.
Hope that these tiny warriors are held by a mighty God.
Hope that love, faith, and prayer carry us through.

Tomorrow we wear Red for those brave little hearts around the world💙❤️

Congenital Heart Disease (CHD) is a group of heart conditions present at birth that affect how the heart is formed and how it functions. It can impact the heart’s walls, valves, chambers, or blood vessels, changing how blood flows through the heart and to the rest of the body. CHD ranges from mild defects that may never require treatment to critical, life-threatening conditions that need surgery within days of birth.

CHD includes many different conditions, such as:
❤️Single-ventricle defects ( hypoplastic heart syndromes)
💙Septal defects (holes in the heart walls)
❤️Valve defects
💙Obstructed blood flow
❤️Abnormal heart connections
Each diagnosis is unique, no two CHD journeys ever look the same.

What if I told you CHD is more common than you know, or would even think? CHD can also even be found through out any point of life, before birth, at birth, or even later in life.
❤️‍🩹1 in 100 babies is born with CHD
❤️‍🩹CHD is the most common birth defect worldwide
❤️‍🩹Nearly 40,000 babies are born with CHD each year in the U.S. alone
❤️‍🩹About 25% of CHD cases are considered critical (CCHD) and require surgery or intervention in the first year of life

Congenital Heart Disease means being born with a heart that formed differently and living a life defined not by limitation, but by strength, courage, and resilience.

Alot ask how to be helpful or even wonder what we do as parents and the simple answer is, Advocate. February is Heart month and I ask that you help us share many other families stories by advocating with us.
❤️Wear blue / red
💙Share CHD stories
❤️Support heart families
💙Advocate for research funding
❤️Learn the signs of CHD
💙Speak life over heart warriors