Today was a big day for Becky.
She finally graduated from the Heart Fab Team.
Becky has been followed by the Heart Fab Team since her January open heart surgery. I first met Dr. Kristen during Becky’s recovery in the PCICU. The team has worked diligently to control her pulmonary hypertension. Using a cocktail of drugs, as well as oxygen, Becky’s has made improvements. However, there have been several bumps in the road. There have been multiple emergency room visits and a second open heart surgery in March. I’ve lost track of how many clinic appointments Becky has had since January.
Sarah (Nurse Practitioner)
If I had a dime for every text I have sent Sarah and Dr. Kristen, I could probably take Becky to Disney World. Once, after Michael’s Eagle Scout Court of Honor, Becky took a sudden turn for the worst. We were celebrating at dinner when Becky started to look terrible. My mother-in-law noticed this well before I did and was debating whether to say something. Once I noticed, I scooped Becky up and rushed home. Mom Rauch and I called Sarah for a video chat. Sarah talked to us while she was attending a family party. She took one look at Becky and told us to get to the emergency room.
Mom Rauch went with me to the hospital, while Dad Rauch drove the car behind us. Emergency room service is exceptional with someone like Becky. Saying “cardiac baby” at an emergency room desk is like uttering “open sesame” at a cave of wonders. Door start opening and people start appearing. There isn’t a moment wasted sitting in a waiting room.
Dr. Kristen worked over the phone late on this Sunday night to help the cardiac team diagnose Becky. We sometimes heard her six dogs barking in the background. Thankfully, Becky’s x-ray was clear and the diagnosis of microaspiration and dehydration was quickly determined. After some medication and oxygen adjustments, she was released home. There have been subsequent phone calls and picture exchanges. I never hesitate to contact them and they are always available to answer questions. Their constant support has given me the confidence to care for a fragile baby.
Chelsea (Nurse Practitioner)
So what changes after today’s appointment? Becky finally gets to go off oxygen during the day. At home, I will be watching her pulse ox machine like a hawk. She most likely will need oxygen at night and perhaps when flying but we are thrilled to give her a break during the day. We’ve taken off one medication and increased another. Prescriptions are renewed and lab orders put in for the future. Chelsea did one last blood draw and then sent us on our way, with strict marching orders to send frequent pictures of Becky. The team will summarize this one last visit and officially hand Becky back to her cardiologist.
Now she’s just a regular cardiac baby on the service of a regular pediatric cardiologist. I hope to never see the phrase Heart Failure in her medical record again.
At the end of the appointment, Dr. Kristen called for a group graduation photo. Andrea and Sarah insisted on taking off Becky’s oxygen. Becky’s fair skin shows the marks from the adhesive dots, a final set of battle scars. I love this picture of a very special group of women. If we took those masks off, I suspect we would see Cheshire cat-sized smiles from the Fab Five. Everyone enjoyed seeing Becky achieve this milestone, the result of a collective effort and months of diligent care.
But then the tears came. For it was a bittersweet moment. Sarah gave me a long hug and walked quickly out of the room. She always makes me smile. Today she made me cry. Then it was time to say goodbye to Dr. Kristen. My heart was full of many emotions. She leads this team that works hard and many times, particularly in the last few months, experiences tragic outcomes. While we can’t talk about other patients, we all remember Sterling and Charlotte. I assured Dr. Kristen that she and her team will remain in my prayers, as will all those other families battling in the PCICU. She wears a medal of St. Raphael around her neck, the archangel of healing. Her healing touch extended to our Becky. We are profoundly grateful.
As I left the hospital, I felt a wave of sadness. Especially as I passed the children’s garden, where I would often meet Maggie after appointments. The empty seats evoked fresh tears for my friends who continue grieving the loss of their babies.
Normally, I call family on my way home from the Heart Fab clinic. I often have a group phone call with my sister and parents as well as a long chat with my in-laws. But today, I drove home in silence with Becky sleeping in the back seat. No music. No podcasts. No conversations. The enormity of this day hit me. It was just about a year ago that we first learned of Becky’s heart condition. And here we are with an engaging, healthy baby who can finally breathe room air.
Becky’s journey continues with lots of therapies. Speech, occupational, developmental, physical. There are continued Cardiac Neurodevelopmental Clinics and Down Syndrome Clinics. Becky still can’t eat by mouth and has failed recent hearing tests. We will be back at the hospital next week for an ENT appointment and swallow study.
Honestly, this all seems minor compared to the near constant worry about her heart and breathing. This apprehension has dominated the last five months. Today’s echo showed that the surgical repairs are holding and her pulmonary hypertension is under control. Her heart is actually rather strong.
It’s a victory for all of Team Becky.