Yesterday Sabrina had her heart failure follow-up appointment. The biggest news is that she continues to grow and gain weight. At yesterday’s appointment she weighed well over 19 pounds and she has recently started crawling! She is full of smiles, loves bubbles, peekaboo, and Danny Go, and continues to keep us laughing every day.
Her echocardiogram showed that her heart function remains stable. While her heart is still very weak, the encouraging news is that the rest of her body continues to compensate remarkably well. She is growing, developing, and doing all the important things we want to see.
One topic we spent a lot of time discussing with her heart failure team was Sabrina’s feeding tube.
When Sabrina first received her NG (nasogastric) tube last July, we were terrified. At the time, we hoped it would only be temporary. Over the past year, her oral feeding has been unpredictable. There have been times when she ate almost everything by mouth and times when she needed the tube for nearly all of her nutrition. In fact, when we were discharged from the hospital on January 10, she was taking almost all of her feeds by mouth, and we thought we might be able to remove the tube before long.
Instead, nearly six months later, we find ourselves relying on it more than ever.
While the NG tube has helped Sabrina grow and thrive, it also comes with challenges. The tube and tape can be irritating, and we believe they contribute to some of the vomiting episodes she still experiences. Twice each week, our wonderful home care nurse checks Sabrina’s vital signs, draw labs, changes her central line dressing, and replaces the tape securing her feeding tube. As Sabrina gets older and more aware, those tape changes have become increasingly difficult for her.
After discussing everything with her heart failure team, we have decided to move forward with scheduling G-tube surgery.
A G-tube is a feeding tube that is placed directly into the stomach through the abdomen. It is very common for medically complex children who need long-term feeding support. While it is emotional to let go of the idea that the NG tube would be temporary, we believe this is the best way to continue providing Sabrina with the nutrition she needs while reducing some of the daily stress and discomfort that come with the NG tube.
The goal is simple: keep Sabrina happy, growing, and thriving with the least amount of trauma possible.
We are currently waiting to get the surgery scheduled and would appreciate your continued thoughts and prayers as we navigate this next step.
As always, we are incredibly grateful for the support, encouragement, prayers, and generosity that have carried us through this journey. We’re looking forward to our fundraiser rummage sale on June 19th and 20th and continuing to work toward the COTA Challenge Grant for COTA for Sabrina’s Change of Heart.
Thank you for being part of Sabrina’s story. 💜
