Uncontrollable Parenting

My baby girl was diagnosed with RSV at her pediatrician nearly two weeks ago. I took her to the doctor because, while we all had green snotty noses, she seemed to be laboring to breathe. When the doc walked in to our room, his typical smiley demeanor immediately changed, and he asked me, “How long as she been like this?” She had started sounding wheezy and crackly the night before, when my pediatrician husband noticed her breathing hard, and suggested that I call and make her an appointment. After checking her lungs and ears, he hypothesized that Autumn had RSV, a respiratory virus that essentially clogs the bronchioles with snot. In came two nurses. One did a nasal swab to confirm RSV, and the other brought a nebulizer so we could see if a breathing treatment of albuterol would help my baby’s lungs. After 15 minutes of her sitting in my lap and letting me hold the mask to her face, the wheezes and labor of breathing didn’t subside. The rapid test result confirmed RSV, but there wasn’t anything to do but wait it out. That was around Day 2 or 3, and generally, the doc explained, the worst of RSV happens on Days 4-6. He warned me that we would need to take her to the Emergency room if her breathing got worse. Mike and I had her sleep in our room that night so we could monitor her all night. The next morning, she was no better, but not worse. Throughout the day, I could tell her energy and oxygen levels were draining. She started getting dark circles under her eyes. We had in our room again that night. Around 3am, she woke us up in a coughing fit. It was time. Mike took her to the ER and I stayed home while our two year old, Noelle, slept. I called my mom who lives a few hours away in Wilmington. The emotion fell out of me when she answered. “I’m getting in the car and leaving as soon as I can,” she said as soon as I told her that Autumn was in the hospital. After the call disconnected, I could barely speak. I allowed myself to break down and cry until no more tears would come. Then, I washed my face and got dressed. I knew it would be at least four hours before my mom would arrive, so I woke up Noelle, we ate breakfast, and we headed to the hospital.

Autumn was so tired, she could barely pick up her head when we walked in. Every breath, in and out, was work for her. Her cries for me were pitiful whimpers. She had tubes in each nostril forcing oxygen into her little body. Three dice-sized electrodes were stuck to her chest to monitor her heart rate and her breathing rate. I could tell she wanted to nurse, but she barely had the energy. I was clumsy with all the wires. Mike had to hand her to me. An hour after we arrived, Autumn’s room up on the pediatric floor was ready. Mike held both our girls in his lap on the hospital bed and I followed, as they were rolled through the meandering hallways and gaping elevators. We were ushered into Autumn’s room at the end of a hall with one big window overlooking the fountain in front of the hospital and the rooftops of homes nearby.

The next day, it was clear she was not drinking or feeding enough, so an IV was placed in her left arm. Her thumb was taped to a foam board along her forearm to prevent that IV line coming out, so we called it her “club hand.” With all the wires and tubes connected to her, it was so hard to pick her up to hold and snuggle her. We were tethered to her monitors, and couldn’t walk with her farther than just a few feet from her crib. She would sit in her tiny hospital gown tugging angrily at her tubes with that useless club hand. She also had a “Rudolph toe” that was a red light taped around her big toe to monitor her oxygen saturation. Child life specialists dropped in and offered her toys that kept her occupied when she had the energy to be awake and play. Mike stayed the nights with her and I came during the day so that I could attempt to nurse. My mom was such a blessing, taking care of Noelle while we were gone and/or asleep, and making meals.

Physically, we were all taken care of. I was emotionally numb. I did what I needed to do each day in kind of a mechanical trance. I had zero energy left over to pray. I let others do that for me, which upset me that I was that shakeable. Admittedly though, my main reason for not praying was that I was so angry at God for letting my baby get this sick, I didn’t feel like talking to him.

Helpless. My arms tied back behind me.
Watching you struggle all alone and frail 
in that too-big hospital bed.
I can't comfort you with my arms like I want.
Your tubes connecting your body to machines and IVs
hold back my ability to hug and squeeze you tight.
Your lips are dry since you can't nurse or drink.
Your cheeks and lashes are salt-encrusted
since I can't wipe away your tears.
Your hospital gown makes you look even more exposed.
Your feeble cries wring out my heart.
My days in your hospital room and nights alone in my bed
transform me into an emotionless machine;
doing the next step to get you well.
Expecting others to do the praying.
I can't do it all.

We came home from the hospital on Monday afternoon, and my mom went back home to Wilmington. Tuesday morning I had both girls to myself as Mike had gone back to work. I was still treating Autumn like a wounded cub, but Noelle wanted attention from me too, since I’d been gone during her waking hours for the past few days. That was a long, hard day. I know in my head that my children are sweet blessings from God. That no matter how painful life on earth becomes, God is still God. That God loves me and each of my girls more than I can fathom. And that it is up to Him how long we are each on this earth, before he scoops us up and takes us back home. It’s our job on earth during this wisp of a life to display God’s love to each other and to the world so that more people can know God’s love for themselves. It is my prayer that my girls radiate God’s love to the earth in mighty and powerful ways, more than I could ever dream. And from my very aching soul, I pray that they would carry out their mission long after Mike and I are watching them from God’s lap in Heaven.