My fiance, RJ, and I learned about Kaden’s congenital heart defect at 24 weeks, and met the team at St. Louis Children’s at 27 weeks. From that point on we were in panic/planning mode trying to figure out what “life might look like when our first baby finally arrived. Kaden was diagnosed with critical aortic stenosis and borderline hypoplastic left heart syndrome. Our original plan was to deliver Kaden in Boston due to the vast array of surgical options they offered, and the unknown of what Kaden’s condition may entail. None of our plans went accordingly, and we unexpectedly had a change of course that left us closer to home in STL. Being closer to home meant more support from our friends and family which was amazing, but home was still an hour away for us and a daily commute was just not feasible. We spent several weeks hopping from hotel to hotel, and even a short stay in an airBnB all so we could be right in the city and near our son. Living out of suitcases and watching out for the lowest hotel rates became a burden (mentally and financially) very quickly. One of our most favorite Nursing Care Coordinators, Kym, sent a referral on our behalf to The Heat House, and explained the Braun family’s back story and mission to help other heart families in need. Our stay at the Heart House came at the time we needed it the very most. We found out that Kaden would be undergoing his first open heart surgery at 3 weeks old, and we were unsure of what the recovery time frame might look like.
As any heart parent knows, it rips you apart to leave your child each night, but you come to a point where you need to take care of yourself too. The Heart House became a place where we could ground ourselves, unpack our bags and call home for a while. We found comfort knowing we had a space to decompress from the very long and emotionally hard days. The best part of it all is we were no more than a 5 minute drive from our sweet little warrior. RJ and I found peace at the Heart House. We could cook ourselves a meal and catch up on laundry, curl up and watch a quick show. Most importantly, we finally could get some much needed rest. Everything about our journey up until then felt so diplacing. The Heart House meant a little piece of stability we most desperately needed. The walls of the home were filled with encouraging words and imagery. To read others’ stories in the guest book made us feel even more connected. One of the fondest memories I have during our stay is a neighbor of The Heart House stopping to say, “hi” and give their well wishes. We spent 3 more weeks in STL and at The Heart House.
As I look back on our journey I am forever grateful for the Braun family and how they have chosen to honor Eleanor Grace and help other families in need. I logged our stay in the journal at The Heart House and hope another family reads it and feels the same comfort we felt. The journey of the unknown can feel so lonely. Thank you, Braun family, for making us feel a little less alone.” – Abbi
“We truly couldn’t be more thankful for the Heart House. Having a newborn with CHD is incredibly tough, and being over 200 miles from home made everything even harder. The Heart House gave us the chance to stay together as a family, especially when our hospital stay ended up being much longer than we ever expected. With the stress of surgeries and treatments, and trying to maintain some sense of normal life for our other child, having a place to stay nearby lifted a huge weight off our shoulders. Being able to eat dinner as a family, get a good night’s sleep, and not worry about the cost of lodging near the hospital—it all meant the world to us.” – Savannah
“Thank you so much for allowing us to stay at the Heart House. This wonderful space provided us much peace and stability during such a challenging time in our lives. We are incredibly grateful for the love and support we received throughout our stay.” – Savannah and Kristopher
“We are far from home but your cozy home made us feel at home during this unexpected time in our lives. Forever grateful.” – Jennifer
“What a blessing it has been to find comfort here and a space to decompress.” – Abbi and RJ
“Thank you for opening up this home to us as we are away from our own home. This house allowed us to be together outside of the hospital without all the alarms. There are not enough words to say how grateful we are.” – Lindsey and Ryan
“What a blessing it was to stay at the Heart House. We are beyond grateful for your kindness. My daughter was able to play while we took turns visiting our newborn at the hospital. It gave us a place of normal that we missed so very much. This house will be a huge piece of the story we tell when sharing our son’s triumph. You are impacting so many people!” – Laurn and Brian
“We can’t thank you enough for giving us such a nice place to stay. It was a blessing to have somewhere that feels like home during such a difficult time. It allowed us to spend 2 short weeks of quality time with our sweet Willow Grace. We will be forever grateful.” – Kate and Paul