One question we have received a lot is “What does your day to day life look like?” So I wanted to take a few minutes and describe our new “normal” for anyone that might be interested. My parents’ lake house is located about 45 minutes from Shands. So everyday, either Matthew or I drive to the hospital. Once there, we have to hope for a parking spot in the garage and walk to the children’s hospital. We check in at the front desk and get a visitor’s badge. Then take the elevator to the floor that Benjamin is on. When we get to his unit, we have to call the desk and give them a special password that grants us entry. Then we walk down a hall bustling with doctors, nurses, and various pieces of medical equipment. We use hand sanitizer before entering his room, and then meet with the nurse for any updates or changes from the previous day. 

Now that Benjamin is a bit further out from his first surgery, we are able to pick him up more “normally”, but still have to be mindful of the various lines attached to his PICC line, the oxygen (if he’s on it), and the VAD driving line (the tubing that connects the mechanical heart to the tool box sized unit that keeps his heart pumping). If we move him too quickly or the wrong angle, alarms buzz and the nurse has to come reset them. Basically every interaction we have with our infant son is monitored and observed. We can’t move him more than a few feet from his crib without the assistance of the nursing staff. Although he does have a baby swing that he likes to chill in, and as he gets older, we will be able to use more typical baby equipment. 

While we’re in the room with him, we feed him his bottle, and care for him as much as possible. Changing diapers around the lines and VAD is challenging but we’re learning! When we leave, we get a parking voucher and then drive the 45 minutes back “home”. On our “off” day, we’re home with Marjorie. Who remains the world’s greatest toddler. Her entire world has been upended, she is separated from her brother, and yet she remains the sweetest, most loving little person.

Recently Marjorie has been getting more interested in seeing Benjamin again, and has even told me, weepily, “I want to see my brother.” We are hopeful that we can arrange another visit for her soon. While having Benjamin in the PCICU is what needs to be happening, it is so hard because of their limited visitor policies. Currently, unless a special exception has been made, no visitor can be under the age of 18. So today, even though we were all in Gainesville for lunch and a museum visit, only Matthew was able to check in on/drop off a freshly cleaned Wubanub pacifier (if you know, you know) for the baby. Even though my children were in the same building, they couldn’t see each other. Fortunately the coffee kiosk was open so Marjorie and I got coffee and hot chocolate while we waited for Matthew.  

We also wanted to thank everyone that has contributed to the COTA fundraiser. The money that we raise for COTA will go toward a variety of transplat-related expenses, such as hospital bills, Benjamin’s medications (some of which he will need for his entire life), copays, and more day-to-day things like the mileage on our cars to/from the hospital and helping with our home expenses (ex: mortgage) while we’re not home. COTA funds will be available throughout Benjamin’s lifetime and will only go toward transplant related expenses. 

Thank you for reading, and continuing with us on this journey. We love and appreciate you all.

-Matthew, Tiffany, Marjorie, and Benjamin