Support Caroline's Super Heart Journey

Hi friends and family and anyone who has come across our story.

We wanted to give an update on our girl now that we’ve finally been given some answers.

Caroline has a rare form of Tetralogy of Fallot (called TOF with pulmonary atresia and MAPCAs). It is very difficult to treat as no two patients are quite the same and she does not have the cardiac anatomy required for the standard surgical intervention normally used in this population.

At birth, she was admitted to CHOA and had surgery to place a MEE shunt at 8 days old. The goal of the shunt was to grow her extremely tiny pulmonary arteries so they would be big enough for a future surgery sometime next year to fully repair her heart. When she was released, we hadn’t expected to have any more procedures until late next year.

As many of you know, Caroline was readmitted on December 11th back to CHOA ICU for hypoxia and aspiration after a Cardiology visit with low oxygen saturation. During the time she’s been admitted, she’s bounced back and forth between intensive care and acute care while we tried to figure out why she seemed to keep having this persistent problem.

After having three severe hypoxia events last weekend, she was moved to ICU indefinitely after a CT scan (and many echocardiograms) couldn’t visualize her shunt. Today Caroline had a catheter procedure that confirmed her shunt closed up post-surgery and she’s been functionally surviving with extremely limited pulmonary blood flow for weeks.

Caroline will unfortunately have to get another open heart surgery next week to place a different type of shunt in an attempt to once again try to grow her pulmonary arteries. Growing her pulmonary arteries are essential for her survival so we are desperately praying that this surgery will work. We are anticipating weeks in the hospital and a long struggle with feeding and growth after her surgery as well. She will also still need that final repair surgery late next year so this isn’t the final hurdle for her.

All that being said, please keep praying for her and sending all the good thoughts. She’s a tough little girl but she’s also been dealt an incredibly difficult mountain to climb. We love her so much and it’s been grueling to watch her have to struggle so hard to do something so basic as survive. We are hopeful that her amazing surgeon is going to be successful in placing her new shunt next week but there will always be the lingering fear of all that could go wrong.

Hug your babies a little tighter this holiday season. We can’t wait until we have all three of ours under one roof again when it’s finally safe to bring Caroline home.

Update:

We are all under one roof and are ready to celebrate the older siblings birthdays coming up with their new baby sister!

Recent donations have been allocated to equipping the home with the necessary feeding apparatus and equipment not provided by medical companies to make our day to day transitions smoother. Funds are also being allocated to transportation costs to make sure in the recent colder weather that we are in safe modes of transportation to and from doctors offices.