What life looks like now that Mercy’s home

It’s good. Deeply good. Despite feeding tube challenges and constant concern about weight gain, it’s simply good to have both parents and Mercy under the same roof with all her brothers.

She adores her brothers and they adore her. They‘ve adjusted well to the additional responsibilities that a high-needs baby brings and are picking up the slack in so many different ways around the house. If you happen to see any of the older three in person, give them a high five. They’ve earned it!

The nasogastric tube is rough. Mercy manages to either yank it out or spit it up every other day (sometimes multiple times a day), and putting it back in is difficult for Mercy and us. Each tube is supposed to last a month. We’re on tube #3 so far, 11 days in. She’s improving her bottle-feeding and nursing skills, however, and we’re hoping she will eventually get all the nutrition she needs without needing the tube. Please pray with us that she does soon.

Erica and I are pulling shift work at night right now to handle Mercy’s feeds. Mercy eats every three hours. Each feed takes about 15 minutes to prep and an hour to run the pump. Whichever parent is on can catch moments of sleep while the feed runs before waking to shut it down once the feed is complete. We have a pretty good rhythm right now, switching out halfway through the night to make sure we each get a little bit of sleep. I’m terrified that I’ll make a sleep-deprived mistake with the meds she needs in the middle of the night or with the tube. So far so good.

Mercy herself is doing well at home. She gained about 30g/day the first week, which is double what she was gaining per day in the hospital. She seems so much happier. Her bad moods are less intense here. She’s happy. She has had a concerning amount of emesis the last few days, but she’s still gaining weight (we hope), so praise God!

Thanks for praying, friends. Even though Mercy has some unique medical challenges, our experience right now is so much more normal than we would have imagined a few weeks ago.