Friday morning our smiling, snuggling, nestling baby was ours. Friday afternoon we had to give her back.
At her normal clinic visit on Thursday, the doctor was concerned that the heart echo showed a decrease in her right ventricle function from the heart echo done last month. He prescribed a medicine for Annie (her first one to be prescribed since she was discharged 6 weeks ago). When Matt shared this with me, I just knew what was to come.
He had consulted our doctor in Philadelphia about the RV function concerns, but shared with her how healthy and chubby and normal Annie seemed during the visit. And we confirmed that she’s only seemed just like our regular baby. We’ve noticed no change in her eating habits, weight gain, daily pulse ox, etc.
Friday during lunch I talked with our doctor on the phone. He and our CHOP doctor agreed that it’d be helpful for Annie to have a blood test to check for a certain type of protein in her blood that would indicate whether she really was (or wasn’t) experiencing heart failure like the echo seemed to show. He asked that I take Annie in for a blood draw, go home to wait for the results, and pack a bag because it was a possibility that her numbers could require Annie to be admitted.
Annie pooped through her whole blood draw, which made the whole process that much more fun! Several hours later, her doctor called to reveal, “I have bad news.” The numbers that guarantee some level of heart failure is present were sky high. We needed to take Annie in to be admitted to the CVICU who “had a bed waiting with her name on it.”
I sobbed. I felt like I couldn’t breathe, and even when I could, I didn’t want to. There must be some mistake! How was I going to take my regular baby, who was at the pool this morning with her sister, to be admitted into the same ICU hallway she needed just hours after birth when she was on life support? He agreed that it seemed it could be a mistake because she looked and acted so good. But the numbers proved that her heart failure was no mistake. Even more, he said we needed to start thinking about where we would want her treated:home or back in Philadelphia. Her CHOP cardiologist had already requested we be transported so that the team who had done so before could adequately care for Annie again.
So on the week where I thought everything was back to normal–I’d gone back to work, I’d celebrated Annie’s health with my friends, we were planning our summer trip to Oklahoma–our lives were stopped again in their tracks. No finishing the email I was writing. No cohosting a baby shower with friends. No evening popsicles shared on the patio while Audrey squealed through her new sprinkler ball. Simply hospital admission where my girl who I dressed and bathed and nursed and rocked till she sighed was handed over to them who poked and wired and pushed till she wailed. There must be some mistake!
My sister reminded me that God was so faithful in Annie’s initial recovery and we could ask that He be the healer again. Yes, God worked miraculously in Annie’s recovery. But where I’m stuck today is knowing that God wanted Annie this way. He meant for her heart to be incomplete. He intended for her heart to be susceptible to fail. Which translates to He means for us to be in Philadelphia again, enduring a grueling medical transport where we cannot hold our baby. He knew it would mean Annie would require medicine to be calmed because she is more than inconsolable during 8 solid hours of lying in her Philly ICU bed only to be pricked for another blood draw, stabbed for another IV insertion, starved for 6 long hours until she can hold statuesquely still for a heart echo, snapped for a chest x-ray that is so risky that I’m instructed to hide in the corner.
She isn’t this way because of some tragic accident. There was no birth complication. Someone didn’t commit something awful against her to cause this. God made her this way–on purpose. And I just keep thinking, God, there must be some mistake.
“When you act as if your life is out of control, you preach to yourself an anti-gospel that forgets God’s sovereign care.” -Paul Tripp