The Beginning Is In Sight

Mercy is scheduled to come home in less than 48 hours. The boys and I (and their Nana) brought her car seat to the hospital yesterday as we visited Mercy, and I got a glimpse of what it will be like to have our family together for the first time in seven months.

For the past 206 days, she’s been in the NICU in three different hospitals. Erica and I have spent as much time as possible with her in each hospital, and when Mercy moved to Lurie in December, Erica spent most evenings staying overnight in the Ronald McDonald family rooms to be close to her. The boys and I have spent those nights missing Mercy, praying for her, thanking God for His steadfast mercies, and asking him to bring our girl home to us soon.

Looking back, Mercy has had a rough road. She’s had four surgeries, is in the double digits for blood transfusions, she’s had multiple types of respiratory support, she’s been tested and tested and tested and tested for all sorts of gastrointestinal, cardiac, ophthalmological, and other conditions that have mostly resolved through treatment or time at this point. Yesterday they removed her central line which was the final minor operation standing in the way of her coming home. The doctors will be monitoring her weight gain, and then they’ll release her to come home.

I’ve been processing and imagining what it’ll be like to have Mercy in our home for the first time. Getting Mercy nutrition will continue to be a challenge. We’re setting up our nasogastric station with supplies in our bedroom this weekend and have follow-up appointments with specialists over the next few weeks. We’re hoping that she thrives and gains weight faster without all the beeps, alarms, and wakeups that characterize the NICU experience. I know it’s not guaranteed. Getting her weight to where it needs to be could be a long journey.

We’ll also be challenged by her semi-regular, panic-inducing gas buildups, and by how similar those symptoms look to symptoms that indicate something is seriously wrong. Yesterday evening, after we had brought in her car seat and the surgeons had removed her central line, Mercy started to cry inconsolably, she vomited most of her 5 pm feed, and she wasn’t passing much gas. I immediately thought about how much this reminded me of the days leading up to her emergency surgery and wondered, if we were home right now, would we be taking her to the ER?

After a few nerve-wracking hours, Mercy finally calmed for one of our favorite nurses here and went to sleep. The nurse suggested that Mercy likely was feeling the tension in my body, and that made me less effective in calming her down. I'm sure that’s true, and I’m not sure that tension will go away when Mercy comes home. I’m guessing there will be many nights in our future where we wrestle with the decision to take her to the ER or wait out her pain.

We got a beautiful foretaste yesterday of what it will look like to have people still with us as the terrifying in-hospital moments transition to terrifying at-home moments. Amid Mercy’s (and our) freakout, a dear friend came over to our house to sit with Erica, hug her, listen to her, and just be with her. This community that has been with us on this rollercoaster - you all - is going to be with us as the rollercoaster moves home and hopefully smooths out a bit.

You all have wept with us, hoped with us, prayed with us, and believed with us. I’m so incredibly grateful that soon you’ll rejoice with us as Mercy comes home where she belongs. It’s not an end, it’s the beginning, and it’s in sight.