I stumbled across a CD of pictures the other day, and I realized that most of you probably don’t know our (read that: Julianna’s) history, even though I allude to it often. So here goes.
It was a long time before I looked at homemade pizza the same way again.
Julianna was five and a half weeks old that day, mid-March of 2007, and one very sick little girl. Not nursing. Everybody else was recovering from the worst cold ever. We’d been to the doctor, who told us it was viral and we had to ride it out. That was Wednesday. On Saturday, when we made pizza, I very nearly lost it. Shaking my fist at Heaven out in the back yard. Julianna did not sleep that night, and at last Christian took her out on the couch. That necessary distance gave me the objectivity to say, If she doesn’t nurse by morning, we need to go the ER.
At 7am. that Sunday morning, I left the boys asleep and took her to Urgent Care. By ten we were in the hospital. By the next morning, we were in the P-ICU:
It was RSV–very dangerous for a child with a heart condition. For more than a week, I pumped around the clock and brought it to the hospital, where I sat in her room from 8-4:30 every day, except when Christian relieved me. They told him to prepare himself. Thank God, he didn’t share that with me until after she was past the worst danger.
Her baptism was scheduled for 5:30 Mass on Saturday, St. Patrick’s Day. Considering her condition, we weren’t about to postpone it! By Saturday she had stabilized, and they were close to weaning her off the ventilator, so they allowed us to bring the heirloom gown and gift blanket into the PICU, and they dressed my sedated baby for her big day.
We received so many gifts that St. Patrick’s Day–not the least of which was the hospital calling a professional photographer to record the occasion for us. The picture below is very telling: the evidence of the beating my poor dehydrated newborn took, the loss of multiple IV lines.
Her godparents got caught halfway here in a snowstorm and had to be piped in by cell phone. Also note the expression on my face. By this point I was calmed down, no longer afraid that I was going to lose my daughter. But I must have been having one of those moments, because that is the look of a mom on the verge of tears.
But the greatest gift came afterward. That was the day when I got to hold my newborn baby for the first time in over a week.
Before that, she had been so unstable that merely shifting her from one angle to another would set off an “episode” where her oxygen saturation would fall to the forties or fifties.
We came home on the first day of spring, bruised souls, profoundly grateful for the gift of our family. Less than four months later, we were in a different PICU, this time at Cardinal Glennon hospital in St. Louis. This time, it was scheduled: open-heart surgery.
I went by myself and stayed at the hospital for four days, until we came home with a fragile, but fixed, heart under our care. We had one more scare that fall, but then the year 2008 was blessedly free of hospital visits. We thought we were in the clear, until May of 2009, when we nearly lost her again.
In some ways, this stay was easier. We knew the routine; they reassured us. But I had another newborn now, and a preschooler, and a writing career taking root, and I felt tired all the time. But all that is detailed in May of 2009. I won’t revisit it all now.
When Julianna came home twelve days later, she wore a nasty white bandage on her neck, from having a “central line” sewn into her jugular (I believe). She smelled like the hospital for weeks afterward. These days, even the smell of her glasses–that same plastic, acrid smell–is enough to bring the whole thing back again. And forever she will bear the marks: three tiny white scars in a triangle on the left side of her neck.
I conclude this long storyby sharing a picture that still makes me relax inside:
When your children come home–even if they’re too weak to do more than sit on the driveway and push a toy back and forth–that is a sweet, sweet moment. So allow me, having sat with my child through six (seven? I’ve lost count) hospital stays, to to climb up on a preacher’s soapbox and urge you:
Cultivate an attitude of gratitude for the everyday pleasure of having your family at home.
Wow, what a story you have. I can’t imagine what it must have been like to watch your baby lay there in the hospital. But your message is crystal clear and so true.
So sorry that she’s been through so much in her life. We ought to count our blessings daily! Happy W/W!
Wow, what a trooper she is! Great story.
Visiting from Angie’s Wordful Wednesdays!