Happy Easter, Baby Boys

Henry enjoyed opening his basket from the Easter Bunny Sunday morning, attending church and nursery, and hunting for eggs in the grass (though he was mostly interested in the grass).

Frankie was the cutest little bunny in the NICU. He enjoyed all the fun things the Easter bunny brought him.

Frankie is doing really well on his home vent trials. He is currently on his home vent for 12 hours a day. He is doing so wonderful with keeping his electrolytes and all his labs stable. We are trying a new med to help him tolerate having his nasogastric tube clamped. If he can tolerate the clamping trial we’ll start in a couple of weeks, we will consider starting him on .3 milliliters of milk. I was really, really upset on Friday after hearing his surgeon’s requirement to try feeding again prior to his reconnection surgery after he had such a bad experience with the last two feeding trials, but his team says that we have to check if his bowel that goes out to stoma is ‘working’, and if it’s not, figure out why. Reconnection surgery will be fruitless if this piece of bowel can’t absorb food at all. So, we have a bit of a set back to discharge but we hope he tolerates the milk and it will not put us back too far.

We have Frankie’s twin size medical crib in the front room now waiting for him and the construction crew is currently sheet rocking the basement to make functional space for everyone as Frankie comes home. We’re so grateful for so many friends, coworkers, family, and others who have helped us in all kinds of ways get things ready for Frankie’s arrival. We do have an Amazon wish list for Frankie’s Homecoming if you’re interested in helping us transform the dining room into Frankie’s bedroom.

Henry is such a fun, happy guy. He loves going on walks in the neighborhood in the stroller, swinging in his swing on the patio, trying to pet Kodi (Kodi isn’t sure if he wants to be petted yet), playing with his Radio Flyer Camper, discovering new noises by clicking toys together or on the hardwood floor, Ms. Rachel, and army crawling across the living room.

We’re taking him to Shriner’s hospital for a consultation with Orthopedics in a couple of weeks to get some current Xrays to look at the difference in bone growth between his hips and legs. We’re hoping Shriner’s will open up some other ideas for supporting Henry through whatever challenges may arise with his hemihyperplasia as he continues to work toward crawling and walking.

Thank you for your constant love and support.

Amanda