Hudson’s Heart Journey

07/02/2025

We are back in Rapid City after a long couple of days with Hudson in Denver. On Monday he had a CT and a heart cath. We had to check in by 8am, he was under anesthesia from about 11:30 to 3, and then weaned off until we could leave around 7:30. He couldn’t eat at all that morning and then had to lay flat for 4 hours before he could sit up and we could leave. It was hard to keep him still that last hour when his meds were wearing off. It was a long day of waiting, but we are so thankful that his heart cath went smoothly and he tolerated everything okay. They did coil two collateralls and measured all the pressures in his Glenn to see if he’s a candidate for the next surgery.

Yesterday, Hudson had a cardiology appointment to go over the results of his cath. They did an echo and EKG and we visited about the upcoming final surgery (called the Fontan) for Hudson. They were very pleased with his pressures. He’s big enough now (about 27 lbs), but there’s no rush since he’s doing so well from a cardiac standpoint, unless his oxygen saturations start to trend downwards. We are tenatively looking at doing the Fontan in the spring to avoid sickness season and hopefully be recovered enough by the summer.

Thank you for all the thoughts and prayers! We have the best herd 💙🦬❤️

06/30/2025

We made it to Denver today. After being in the car for over 6 hours, we enjoyed walking around the Botanical Gardens. Hudson loved looking at all the water and fish.

Tomorrow morning Hudson will have his CT and Heart Cath starting at 9 AM. We would love for everyone to wear their “Hudson’s Herd” shirts tomorrow to support him through yet another appointment/procedure along his HLHS journey. All prayers are appreciated tomorrow that his procedure goes smoothly and for good news to follow. Thanks for being apart of Hudson’s Herd💙🦬❤️

06/06/2025

Update: due to some scheduling conflicts, we decided to push his appointments and procedures to July 1-2

Update: 5/3/2025

On Monday, April 21st Hudson had a cardiology appointment with Dr. Sami. In January his echo showed collateral vessels that had formed, so Dr. Sami wanted to do another echo to follow up in 3 months. His echo didn’t show much change, however, his cyanosis (blue/purple color on lips, hands, feet) is slightly increasing and his sats are slightly decreasing (but still in his normal range). This indicates the beginning of Hudson growing out of his Glenn and that these collaterall vessels might be taking oxygenated blood elsewhere in the body.

After consulting with his cardiologist at Children’s Hospital Colorado, they want to do a CT scan and Cath procedure to get a better picture of his heart and coil the vessels if necessary. This information will better prepare for them for his next surgery, the Fontan, which will probably take place in the next couple months. We just scheduled his CT and Cath procedure in Denver for June 4th.

Please continue to pray for our warrior Hudson
❤️🦬💙

05/03/2025

Update: 5/3/2025

On Monday, April 21st Hudson had a cardiology appointment with Dr. Sami. In January his echo showed collateral vessels that had formed, so Dr. Sami wanted to do another echo to follow up in 3 months. His echo didn’t show much change, however, his cyanosis (blue/purple color on lips, hands, feet) is slightly increasing and his sats are slightly decreasing (but still in his normal range). This indicates the beginning of Hudson growing out of his Glenn and that these collaterall vessels might be taking oxygenated blood elsewhere in the body.

After consulting with his cardiologist at Children’s Hospital Colorado, they want to do a CT scan and Cath procedure to get a better picture of his heart and coil the vessels if necessary. This information will better prepare for them for his next surgery, the Fontan, which will probably take place in the next couple months. We just scheduled his CT and Cath procedure in Denver for June 4th.

Please continue to pray for our warrior Hudson
❤️🦬💙

02/21/2025

Here’s a great explanation of Hudson’s heart condition, HLHS.

💙❤Heart Month❤💙

Hypoplastic Left Heart Syndrome (HLHS) is a complex cardiac defect impacting the left side of the heart affecting the following structures:
• The left ventricle is underdeveloped and too small
• The mitral valve is not formed or is very small
• The aortic valve is not formed or is very small
• The ascending portion of the aorta is underdeveloped or is too small
• Often, HLHS is also associated with an atrial septal defect (ASD) which is a hole between the left and right upper chambers (atria) of the heart

The left side of a healthy heart gets the oxygen rich blood from the lungs and then pumps the blood out to the body. In babies with HLHS, the left side of the heart cannot pump oxygen-rich blood to the body properly. When inside their mother’s womb, there are two small openings between the left and right sides of the heart: the patent ductus arteriosus (PDA) and the patent foramen ovale. Normally, these openings will close a few days after birth. For a baby with HLHS, the PDA is often the only pathway through which blood can reach the body from the heart. When the PDA begins to close, the blood flow to the body will decrease, leading to very low blood flow to vital organs which can lead to shock.

Without treatment, HLHS is fatal.

In order to help increase blood flow to the body and bypass the poorly functioning left side of the heart, three separate surgeries are typically performed: Norwood, Glenn and Fontan. These surgeries do not cure HHLS but rather help restore heart function.

HLHS has lifelong complications and requires constant monitoring. Some complications that arise are abnormal heart rhythms, low oxygen levels and weakening of pumping chambers or leakage of one or more valves. Other problems that can develop are “protein losing enteropathy”, heart failure requiring a heart transplant or problems with liver or kidney function.

Organizations such as HeartWorks are making huge strides towards medical advancements for single ventricle CHDs.

01/22/2025

Update on Hudson 1/22/25

Hudson had a cardiology appointment on Monday with Dr. Sami in Sioux Falls. Dr. Sami was very pleased with how Hudson is doing, he’s growing well, very active and seems to be thriving on the outside. However, they did find something new has developed on his Echo. They found multiple aortopulmonary collateral vessels. Sometimes these vessels grow after the Glenn surgery and increased aortopulmonary collateral flow can be seen in single ventricle palliation. While the cause of increased aortopulmonary collaterals is unclear, it is often due to chronic hypoxia. However, these systemic feeders may have detrimental impact on the single ventricle due to increased pulmonary blood flow with increased volume burden. The current interventional practice in most centers is to consider transcatheter coil occlusion of these aortopulmonary collaterals if they become hemodynamically significant in preparation for Fontan procedure. We are waiting to hear back from Denver Children’s Hospital to see what they think about these new findings and if we need to go back soon for a Cath so they can coil the collaterals.

Monday’s news was quite shocking to us. It’s hard to process when you see how well Hudson is doing on the outside. He has no trouble keeping up with his big brothers. He climbs and falls, runs and trips, laughs and cries. He appears to be completely normal. But then we see his next cardiology appointment on the schedule and we are reminded that our baby boy is not so normal. It’s a miracle that we get to forget about his heart at times. His daily meds are just part of the routine now and the we go about our day. It’s easy to forget that everything could change in the blink of an eye. Now we will wait for CHC’s review of the findings and see what the next steps will be.

Please keep Hudson in your thoughts and prayers. Pray for more days, weeks, months, and years of continued health and happiness. Never take your loved ones for granted. You never know what each day will bring.

11/01/2024

Hudson was able to join the Superhero crew this year!

10/09/2024

A newborn heart is approximately the size of a walnut.

Stop and think about that for a second. A walnut.

Think about how tiny the chambers must be.
Think about how small and fragile the veins are.
Think about the size of the valves.

The size of the newborn heart makes what heart surgeons do even more extraordinary. It makes the skill of an ultrasound tech to be able to detect a heart defect remarkable.

The ability to operate and detect heart defects on such a tiny organ is nothing short of a miracle. But it is a miracle backed by science. Backed by years of critical research to advance the care in the field of congenital heart defects.

The heart community has seen increased survival rates thanks to improvements in diagnostic techniques, catheter interventions and several surgical innovations. Yet despite this improvement, the mortality rate during the first 4 years of life among those with CHD remains high. The need for further improvement in pediatric cardiac care persists. Congenital heart defects remain the leading cause of infant death due to birth defects. They account for nearly 30% of infants deaths related to birth defects.

Levi’s Legacy has donated $326,000 to date for CHD specific research to help drive innovation and advancements in pediatric cardiac care. Through research, awareness and funding we will improve the survival rates. Because together, we are stronger than the storm.

09/30/2024

https://www.facebook.com/share/p/14vba2t7rC/?mibextid=WaXdOe

💙❤World Heart Day❤💙

Today is World Heart Day and we never pass up an opportunity to spread awareness about the critical need for support for congenital heart defects. The heart is the first sign of life and the last sign of life. It is the only organ that you can hear and feel. A beating heart matters to everyone!

💙CHDs are the most common birth defect
❤Nearly 40,000 infants are born with a CHD in the US each year
💙CHDs are the most deadly birth defect
❤Most causes of CHD are unknown
💙25% of babies born with a complex CHD will not live to see their 1st birthday
❤Because of medical advancements, death rates have declined by 37.5% since 1999

World Heart Day's slogan is "Use Heart for Action". The theme emphasizes supporting individuals to care for their heart and empowering them to urge leaders to take cardiovascular health seriously by providing a global platform for action. The action is the deliberate and impactful ex*****on of efforts. It highlights a shift from awareness to empowering with a clear purpose and goal. There is also the two-way nature of action: efforts to influence policies and advocate for behavior change and physical activity. It reflects the requirement for sustained efforts and collaboration.

09/25/2024

He’s the cutest little messy eater 🥰

08/30/2024

It has been a while since we last updated Hudson’s Herd, so here’s what he’s been up to!

August 2nd - We went out to Rapid City to spend a couple days with my parents. We left the older 3 boys with them and continued on to Denver for a couple of appointments for Hudson.

On August 5th, Hudson had a non-heart related procedure that was pushed back to a later date after he was born due to the heart issues that were of a higher priority (obviously). We preferred to do this procedure at the hospital where Hudson’s cardiac team is located just in case any issues arose. Due to the use of anesthesia, Hudson wasn’t able to eat or drink anything after 2:30am for his 8:30am procedure. That was not so fun and nobody slept well that night. Thankfully, the procedure was successful and he woke up happy, just very hungry.

The next day, Hudson had his 1-year-old wellness check and also saw a bunch of therapists who conducted a neurological examination to see whether or not he was delayed in any areas. This is routine and we didn’t expect to hear any bad news. We were correct. His care team was so happy to see how well he is doing. He’s average or above average in all the areas they assessed.

Hudson has been thriving since we brought him home from Denver following his two heart surgeries. He’s growing and gaining weight. He’s babbling a ton and starting to walk all over the place. He tries to keep up with his brothers and is curious about everything now that he can get into it all. His toys take the back seat to the cabinets and pots and pans, shelves will be empty after he walks by, and anything on the edges of tables is in danger of being spilled or thrown across the room. Everything is a ball that needs to be kicked or thrown while he walks. Our house looks like a tornado has gone through it every evening between him and his 3 brothers. It’s awesome. 😂

We owe a ton to you all, his Herd. Without your support, meal train, and prayers, the 4 months at home without Talia and Hudson wouldn’t have been possible for the 3 older boys and me. Without your financial support, the past year of Talia staying home with Hudson wouldn’t have been possible. We can’t thank you all enough.

Next steps: we’ll go back to Denver next summer for Hudson’s 2-year-old checkup. If everything is still looking good, we’ll push his final surgery back to when he’s 3. It seems like that’s the latest they want to wait. So, we have about 2 years to prepare for that, barring any complications in the meantime.

Again, thank you all for your support through all of this. We love you!

07/12/2024

Happy “Heartiversary!” Yesterday marked 1 year since Hudson’s first heart surgery, the Norwood. Words can’t express the experience of sending your newborn son off to the OR and putting his life in the hands of his surgical team. However, I do remember feeling a sense of peace knowing that we picked Children’s Hospital Colorado and Dr. Jaggers because they were the best. 1 year down, many more to go. Love you Hudson Hayes!