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Ollie's Outstanding Heart

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St. Louis, MO
Ollie's Outstanding Heart

Ollie was born on 10.6.2021 with a rare and critical heart defect. Follow along on his journey 💙

02/05/2026

When you're Ollie, you're allowed to walk around the hospital with no shirt on 🙃

Ollie had a routine echocardiogram and clinic visit today. He has been off all medication for a while now, and his echo has remained unchanged! 👏 At his next cardiology visit, we will talk about doing more in-depth testing, as his last CT and nuclear medicine imaging was in 2024 🩵🩵🩵

09/03/2025

Cardiology visit for Ollie today! 🩵

He has officially been off all of his medication for nearly 3 months! His Echocardiogram showed everything has remained stable and his EKG looked great! In Ollie’s world, no news is the best news. See ya in 6 months, cardiology! ✌️

06/18/2025

We’re officially trialing Ollie off his last medication! 💙

Since bringing him home from the hospital, Ollie has taken over 7,500 syringes of medication. At one point, it was 8 syringes a day. There was even a time where I was giving him daily shots in his leg for a blood clot he developed after a Cath. The final medication we’re trialing him off is a heart medication he’s been taking three times a day for the past 3.5 years.

For the first time in his life he will wake up tomorrow and not have to take any medicine! I honestly cannot believe how far he has come. The strength, resilience, and courage this boy has shown leaves me in awe. Watching him reach this point feels surreal—and so incredibly hopeful. ✨ Go Ollie, go!

05/13/2025

It's been a while since I've had this view. Ollie has come down with a virus and has been needing oxygen support. I definitely do not miss the days of him being tangled up in his oxygen and pulse ox cords! Hopefully we are able to keep him home while this virus runs its course 💙

04/17/2025

Cardiac Neurodevelopment Clinic today! 💙 During his visit he saw Cardiology, Neurology, Physical Therapy, Occupational Therapy, Speech Therapy, and an Orthotist who came to cast him for new leg braces! Everyone is amazed at how well he is developing! While at the hospital Ollie and A Heart For Stella got to officially meet for the first time! (Photo to come at our next run-in!) 💕

Kids with Down syndrome and kids with congenital heart disease are typically smaller than other children their age and tend to grow at a slower rate than their peers. Ollie’s growth chart looks great! While he is very small when compared to the average 3.5 year old he is rocking the Down syndrome growth chart!

03/11/2025

Oh, 👋🏼 Ollie! Pretty cool seeing this kid displayed in the halls of the hospital! 💙

Ollie spent the morning at Children’s for his weekly therapy session. Then we headed to the lab for bloodwork. We are trialing him off of a medication he has been on since birth! 🤞🏼 You are doing great things, Ollie!

02/05/2025

Cardiology visit for Ollie today! 💙 Ollie loves Dr. Aggarwal, Andrea, and being at the hospital!

Today was a remarkably easy cardiology day with just an echocardiogram and clinic visit. His echo has remained stable 👏🏼, a truly wonderful sign of his progress! We will plan to have another cardiology visit and echo in six months - the longest we have ever gone between appointments/echos. We discussed the possibility of taking him off another medication come summertime, which would be huge, as we currently give this medication three times per day. In the spring of 2026, Ollie will plan to have a sedated cardiac MRI, to keep him from being exposed to more radiation from CT and perfusion scans. There was talk of the possibility of having to have another heart surgery as his right-sided pulmonary veins are still narrowed 💔, but we remain hopeful that this will not be necessary.

Back to the hospital again tomorrow morning for feeding therapy!

10/02/2024

Ollie had a long exhausting day at the hospital🏥 He started the morning off by having an IV placed, which usually is no big deal for Ollie, but today was much harder. He then had a CT and Nuclear Medicine Imaging. I think he is finally at an age where he is starting to understand what all of these tests entail. Over the past 3 years Ollie has spent a lot of time being poked, tested, and doing things most toddlers will never have to do. While I am extremely grateful that he is able to receive this amazing care it can be heartbreaking at times. Today was hard seeing him so scared.

This afternoon he enjoyed happy time in the garden shooting footage for a super special project! 🎥 ⭐️ Ollie then headed down for an echocardiogram and clinic visit with his cardiologist.

His CT and Nuc Med imaging results have remained stable! Ollie has now been off Sirolimus for one year - the “miracle” medication that halted the progression of his disease - so it was great to hear that the stent in Ollie’s left pulmonary vein still looks pretty good! We will keep an eye on his right pulmonary vein and possibly stent it down the road. It was a great cardiology visit to close out a long exhausting day!

Ollie will be back for another cardiology visit in 3 months and we will go from there! 🩵🩵🩵

09/26/2024

The A team! 🩵🩵🩵 Today we were invited to speak at the St. Louis Children’s Hospital Friend’s Tea event, along with Dr. Aggarwal and Andrea! A beautiful morning spent with a group of supportive women listening to Ollie’s story and receiving insight from Ollie’s care team.

Next week Ollie will be at the hospital 3 different days for a big cardiology work up ( CT scan, nuclear medicine imaging, echocardiogram, and clinic visit), Down syndrome clinic, and feeding therapy.

Prayers that everything has remained stable 🩵

07/14/2024

Ollie and his new AFO braces! Through a lot of trial and error we finally found a pair of shoes that fit with them. He is cruising now! 👟

05/16/2024

💙💙💙

This morning Ollie had a Cardiac Neurodevelopment Clinic at Children’s. Big sister Charlie is officially on summer break and of course wanted to tag along (future cardiologist!?) The Cardiac Neurodevelopment Team brings together cardiology, neurology, physical therapy, occupational therapy, and other healthcare professionals to provide comprehensive care to children with congenital heart defects. Their goal is to address the complex needs of these children and improve their overall quality of life.

Ollie also saw an Orthotist and was casted for new orthotics - as we determined his current braces are not giving his legs/feet enough support while standing.

Last we headed to get a hip x-ray to evaluate his hips and have labs drawn for hematology and endocrinology!

04/03/2024

Wow, seeing Ollie like this never gets easier. We walked into the hospital and immediately ran into Dr. Lee, a cardiologist in The Heart Center (and quite possibly the sweetest woman ever), and instantly the tears started flowing. This was Ollie’s 5th Cardiac Catheterization so I thought it would be a breeze. I’m a pro now right? Maybe it is his age or the fact that he has been home “seemingly” healthy for so long.

Ollie is now out of his Cardiac Catheterization and recovering 💙 The procedure lasted around 2 hours and they were able to successfully ballon his pulmonary veins and his pulmonary stent. Both Dr. Balzer (Cath doctor) and Dr. Aggarwal (Ollie’s cardiologist) were very pleased with how everything looked internally. If you remember, Ollie came off of a huge medication in October, so it is amazing to see that everything still looks good.

He will stay sedated until 1:30 and then they will slowly wake him up and transfer him over to The Heart Center for the night. The plan for tomorrow is to have another echocardiogram and then come home!

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One Children’s Place
St. Louis, MO
63110

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