Coming Home after 15 Months in the NICU

When our twins were born at 28 weeks gestation, I knew the road ahead would be long and uncertain. I expected they would stay at least 3 months in the NICU but I never imagined Frankie would spend 15 months in the NICU, an entire year longer than Henry. The 454 days Frankie spent in the NICU were filled with heartbreaking conversations, joy when he achieved milestones or was improving, late night phone calls with nurse practitioners and neonatologists and his primary nurses, lots of research and learning about ostomies and wound care, ventilators, deciphering lab results and imaging, navigating infections, surgeries, making tough decisions, and tuning into a mama instinct that would protect Frankie many times.

The last two weeks have been a whirlwind of excitement getting him home and also extreme stress and chaos, including a couple of emergencies with his trach that required 911 calls. Because the team went back and forth so many times on whether we were doing surgery this summer or delaying to work on feeding at home, I had a lot of preparation to do at the last minute. I bought a 2022 Toyota Sienna (the only one on the lot), was receiving Frankie’s medical supplies by mail, by drivers, and at the hospital piling up in every nook and cranny, and transforming our dining room into a makeshift NICU. The basement was also finished just in time and we got all the furniture back in there so that my mom and Henry would have a comfortable place for play and relaxing since Frankie would be taking over the main floor. Private duty nursing worked out at the last second and luckily we have really amazing nurses that I’m so grateful for. One of his nurses even had him a couple nights at Primary Children’s when she was floated to the NICU.

We made it to Frankie’s outpatient appointments and his labs look great, he’s gaining wait appropriately, and is a happy smiley guy. I am grateful for the moments I get to cuddle with him in his huge medical bed. I can tell he’s flourishing being at home and enjoying the attention and love. I’m excited to have him start occupational therapy, physical therapy, and speech therapy at home. He’s already been doing tummy time on the boppy and enjoying it – something that felt so out of reach even just a month ago. 

Thanks to everyone who’s sent supplies from Frankie’s wishlist or other forms of support to help us. I realized the list I made for Frankie was simply a shopping list and not a gift list, so I’ve fixed that. Here is the new gift list. Frankie really loves sitting in the bouncer (a hand me down from Henry), but it is only rated for 20 lbs and his bum is almost hitting the floor! Frankie would really love to explore some new seating options from his gift list. We also go through a lot of ostomy products that are not all covered by insurance and we end up buying some of that on Amazon, as well as his diapers, chux/puppy pads, batteries (the guy loves his Little Einsteins Aquarium), laundry products (we do a lot of laundry around here since he leaks a lot), and he’s currently very into o-balls or similar toys.

Henry isn’t quite sure what to make of Frankie. He is interested in him, and especially all his medical accessories, but they are not quite playmates yet as they are in very different stages developmentally. We hope that by continuing to gently nourish their relationship, they will grow back to each other.

Henry has had chronic ear infections so we’re taking him to ENT in July to see about tubes. Poor guy can’t catch a break between that and cutting teeth. He’s still going to day care on Thursdays when I work in the office and my mom watches him the rest of the time. He’s a very busy boy and into everything right now!

I am back at work after spending the last two weeks working on discharge and transition to home with Frankie but the calls and coordination to get Frankie the care he needs and deserves never stops. Between his many specialists, private duty nursing, supplies through the home care company, and more, it feels like the phone is glued to my head sometimes. But I will do it all and more for my sweet boys. I’ve never seen Frankie smile so frequently. He’s so happy to be with family all the time.

Thank you for your continued support and love for my boys.

Amanda