A couple of weeks ago, after getting the okay for outdoor visits, Sabrina got a playdate with her big brother, Audric! She had fun watching him run around the playground across from the hospital, and then we all got to sit in her room and watch some Spidey and His Amazing Friends (a favorite of both Audie and Sabrina…and Kyle). It was surreal to have the four of us sitting in one room together — so sweet and so bittersweet.
Unfortunately, just after that wonderful day, Sabrina tested positive for two separate strains of the common cold. When your child’s heart function is fragile, even a cold is taken very seriously. For the last two weeks, every staff member who has come into Sabrina’s room has had to gown and mask up. We told her it’s because it’s Halloween month and everyone is dressing up just for her. 🧡 For about a week, she wasn’t allowed to leave her room. That was such a letdown since we had just gotten into a nice routine, and any scrap of normalcy you can create while living at the hospital feels like a lifeline. Thankfully, Sabrina’s cold has been very mild and hasn’t affected her heart function. We should be back to our “normal” hospital life within the next few days, but I’ll take this opportunity to remind anyone planning to visit: please make sure you have no symptoms of illness — even a runny nose or what feels like allergies. Sabrina getting sicker could have very scary repercussions.
Other than her cold, not much else is new — we continue to wait. Some days are harder than others. We’ve had a couple of echocardiograms that Sabrina’s team has said are unchanged. We’re trying to remember that “no change” is good; it means she isn’t regressing. She continues to drink most of her bottles and is gaining weight steadily. She is growing, she is happy, and right now, she is safe. This is what I repeat to myself each day when things start to feel overwhelming.
At this point, the most likely scenario is that Sabrina will need a heart transplant. There are so many questions that come up when I tell people this — which I completely understand. Before we were thrust into the world of heart warriors, I didn’t know any of this either. So I thought I’d address some of the most-asked questions here, to help those who love Sabrina better understand what’s going on now and what’s ahead.
Most Asked Question #1: When will Sabrina come home / Why can’t she come home and wait for a transplant?
Right now, the most likely scenario is that Sabrina will need to stay inpatient at the hospital until she receives her transplant. Although she looks great and is clinically doing well, part of her stability is thanks to a drug called Milrinone, which continuously feeds through her IV. It helps her heart squeeze more effectively. Her heart isn’t healthy enough to manage without it. There’s a small chance that someday she could come home with nursing support, but that would move her to 1B transplant status, which would significantly lengthen her wait time for a donor heart.
Most Asked Question #2: When will she get her transplant?
This question is so incredibly loaded. The short answer: the timeframe we’ve been told is about 8–10 months, but it could be longer or shorter. We’re planning for roughly a year of living between home and the hospital.
The longer answer: there are many factors that go into how a donor heart is matched — it’s not a simple line or number system. Sabrina is so young that she hasn’t developed antibodies that would attack a heart of a different blood type, so she can currently be matched with any blood type (this is known as ABOi). She’s tested every few weeks to confirm this hasn’t changed. But because she’s so young, there are simply fewer donor hearts. So we wait — and we hope.
Most Asked Question #3: After her transplant, will she be better?
Yes — with some caveats. I may share more detail another time, but in short: after her transplant, Sabrina should feel better, have more energy, and be able to do nearly anything she sets her mind to. She will need to take immune-suppressing medication for life to prevent rejection of her new heart. These medications will make her more susceptible to everyday illnesses. And at some point — likely within 20–30 years — she will need another transplant. I wish with all my heart she didn’t need this, but if that’s the path we must walk, then daily medication and long colds are a small price for the gift of life.
Most Asked Question #4: What about a pacemaker, medication, or alternative treatment?
The Heart Failure Team at Children’s Minneapolis has been wonderful to us, but we’ve also sought second opinions from Mayo Clinic and the University of Minnesota (the three pediatric heart programs in our area). We’re currently awaiting a second opinion from Boston Children’s Hospital, one of the top programs in the country. We trust Sabrina’s doctors but we’re leaving no stone unturned. We’ll do absolutely anything for our daughter.
Most Asked Question #5: How are you guys doing?
When people ask this, sometimes my brain just short-circuits and I end up staring blankly. “Good” is polite, but it’s not true. We are not good — but we are determined that someday, we will be.
Right now, we’re getting by. Our focus is making sure both of our children feel happy, secure, and loved. Kyle’s work has allowed him to be on a reduced schedule, working two days a week. The night before those shifts, he stays overnight at the hospital, leaves early for work, and is home with Audric that evening. My employer has been incredibly accommodating, allowing me to work remotely from the hospital with flexible hours — sometimes squeezing in a few hours after Audric’s bedtime. We switch off between home and hospital every day. Our parents and Nana Pam have been an incredible support system — helping with Audric, giving us breaks, and making it possible for Kyle and me to spend time together at the hospital or take Audie to events. Some friends are still helping out by bringing us meals, which is amazing. We’re making it work. Some days are very hard, but we’re keeping our sense of humor, and we’re finding joy, laughter, and gratitude wherever we can. We are determined to make memories as a family — even if this stage looks nothing like what we imagined.
That’s all for now. Please keep Sabrina in your thoughts, and keep sending up prayers for her. We appreciate it so much. 💜
#SabrinaStrong
