SHE'S HOME! (well, she was...)
Shortly after I hit SEND on my post Monday night and headed to Greenville, SC, for my pre-dawn flight to Massachusetts, we received the joyful news that Jane was definitely coming home this week!
We had thought that Boston Children’s would not discharge her until the feeding tube could be removed, but that may be many weeks or even months yet. At 9 pm Wednesday, our son and daughter-in-law walked through the door wreathed in weary smiles with one tiny baby and many, many bags of medical equipment.
After ten weeks in cardiac care and multiple surgeries, our baby girl is HOME at last.
Well, she was.
Just as I was about to post this, a problem developed and they are on their way back into Boston, their second hospital visit today. We're not sure whether they will admit Jane again or not.
This grandma has been in for a reality check. Over the past nine months since Jane's diagnosis, I have focused on one seemingly impossible goal after another.
A live birth despite odds of 99:1.
Healing from an exceedingly rare complication that developed after successful open-heart surgery at three days of age.
Remaining in Boston despite the strong possibility that Janie would need to be transferred to CHOP (Children’s Hospital of Philadelphia.).
Thank you for celebrating God’s faithfulness with us every step of the way!
Yet as one empathetic friend wrote, “The goalposts keep getting moved, don’t they?!”
This morning, Jane spit up – as all babies do – but this simple act dislodged her NG tube necessitating a rapid trip to the ER. She is on five different medications and a strict schedule of nine feedings per day, all closely monitored to make sure she does not gag or choke.
Most parents can sleep when their newborn does, but that’s not possible with Jane. They have upcoming appointments with the radiology, cardiology, immunology, hematology, gastroenterology, hepatology, and endocrinology specialists following her case. I know our children would greatly value your continued prayers for the days ahead.
I have never wanted to use this space to focus on the needs of our family to the exclusion of your needs – you cherished friends who join me here each week.
But for now, you’ll understand my need to continue to press pause on future posts for a few weeks. I’m not trained to manage the night vigils, but I can cook and clean, handle laundry and grocery runs and the wrangling of Jane’s lively siblings.
Friends, I know that some of you are suffering right now. I wish I could be there for you! Yet as Andy Stanley has said, “Do for one what you wish you could do for everyone.” And I need to do for my family right now.
One of the most faithful members of this community, mom to seven, is fighting for her life tonight on a ventilator in an Illinois hospital. The culprit is COVID, that damn disease. I wish I could come alongside Christine’s family, for they are keeping vigil too. Please pray for them, will you?
Author Tricia Williford encouraged me today with these words:
“What I do might just be a drop in the bucket. But the bucket gets full somehow, with a lot of drips and drops. Sometimes a cup, sometimes a tablespoon. It’s not my job to fill the bucket. It’s my job to pour my cup.”
As I lay down to sleep tonight, knowing that healthcare heroes are watching over Jane, I am comforted that God is keeping watch over us all.
And I am praying for you, dear friends, as you pour your cups out over the needs of a weary world.
Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep. Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous; and all for your love's sake. Book of Common Prayer
- Maggie Wallem Rowe