I never expected to be a heart mom. I never thought I’d have to pass my baby off to a surgeon; it’s the hardest thing to ever do as a mom. I never knew what the CHD world was before Raine was born. I just thought how any other parent thought: I’m having a baby I’m excited to start this new experience. But it didn’t turn out the way I was picturing it.
I found out at 20 weeks pregnant at my gender ultrasound that I was having a daughter, and that something was wrong with her heart. At first they thought it was pulmonary atresia but sent me to St. Louis Children’s Hospital to confirm and that’s where it changed to Truncus Arteriosus. On August 1, 2018, Raine was born at 39 weeks gestation. She was rushed to the CICU (cardiac intensive care unit) – I only got to hold her for a few minutes.
She had heart surgery at 16 days old; she was given an artificial conduit because the aorta and the pulmonary valve are connected, and a pacemaker because her heart won’t beat properly on its own. She was on the vent for two weeks and then she kept flatlining due to a problem with her pacemaker. She was in the hospital for 57 days, and thankfully came home for the first time right before she turned 2 months old. I didn’t think I’d live in the hospital with my newborn for almost 2 months and miss everything that other mothers get to do with their baby.
I’ve had to learn lots of new things since Raine was born: using a feeding pump, navigating an NG tube and G-button, pacemaker stuff, medications, lots of appointments. I’ve had to learn to help my child eat and live. It’s just how it has to be Raine to thrive.
When Raine was 6 months old, in February 2019, she had her first photo session with On Angels’ Wings. OAW has done a few beautiful photo sessions for us since then and I love their fun events for families. They are so giving and it’s so sweet that they take the time to help medical families. I am very appreciative for all of what this group means and does for others!
Things are really good right now, Raine hasn’t had a heart surgery since her first one. She’s had two heart catheters, her last one in June 2019. She’s had several pacemaker surgeries, but that’s been good since November 2020. In February 2021 we stopped using her G-Button to feed her; she began eating like a typical child and by November her G-Button was removed!
In March 2021 we welcomed our second child and Raine became a big sister, which On Angels’ Wings captured for us. She likes being a big sister… most of the time! They love screaming at each other and then they laugh about it – it’s so cute!
I can’t help but hope that she won’t have to have many heart surgeries in her lifetime, though she will have to have her conduit replaced as she grows. I hope that her pacemaker stops giving her problems and she won’t have to keep having surgeries for that. I really wish that her heart would fix its beat and she won’t need her pacemaker anymore but that’s a long shot right now, because her underlying heart rate is only 30/40s. My dream is that all her medical stuff won’t stop her from being what she wants to be or do in her life!
Kristin Lutz
Mommy to Raine
Congenital Heart Defect
