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Authors: Paul Daugherty
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tubes. She was hooked up to machines that hydrated her, monitored her heart rate and the level of oxygen in her blood. Tubes ran into her chest and abdomen. She had an oxygen monitor attached to her tiny index finger. It was metal and glowed red. Antibiotics dripped into her body. Wires that were held in place by tiny, circular Band-Aids ran from her chest to a monitor on the wall.
She didn’t know what was going on. She had no idea there was a chance that, if she didn’t respond to the aerosol treatments and if she kept losing weight, she’d be put on a ventilator, and that could cause brain damage.
We wore masks in the room even though we really didn’twant to. We didn’t want Jillian to be scared. When Kelly came to visit his little sister, he remained in the hall, waving at her from the window.
The monitors beeped and buzzed. Aural terror. The machine that measured the oxygen concentration in Jillian’s blood was especially horrific. It had a habit of beeping several times an hour, usually after Jillian had shifted in her crib and moved the monitor wires. Each time, a nurse would come in, shut it off and tell us not to worry.
Kerry got the message. After a day or so, she calmly told a nurse that the “stupid oxygen machine” was going off again.
I wasn’t able to do that. I couldn’t rein in my fear. Every time the oxygen machine beeped, I reacted as if I’d been stabbed. It was the soundtrack of my despair. I wondered if it would ever stop. I began to see the infernal beeping machine as a metaphor for the rest of our lives.
We’d been doing okay, coping. The therapies were starting, Jillian was on a schedule of eating, napping, dancing with me and going to bed. Kelly was in preschool. A calming normalcy had returned. After a few months, we wanted nothing more than for the world to stop spinning so fast.
Kerry kept detailed notes during those first several weeks, handwritten in pencil in a short, spiral notebook. The jottings helped her keep track of what the whir of doctors and therapists were saying. They also slowed down the world. As such, they were therapy, too:
10/31, Weight, 6 pounds, 6 ounces
9:30: Dr. Perez, echocardiogram at Children’s Hospital
1:00: Dr. DeBlasis, two-week checkup, PKV retest
EKG, Dr. Schwartz. Right side of the heart apparently enlarged. Sonogram needed, to see if opening between right and left side has closed. Small hole between chambers should close by itself. Re-exam in 3 months.
I took Jillian to the 1:00 p.m. appointment with Dr. Nancy DeBlasis, Jillian’s pediatrician. I was armed with Kerry’s questions:
Why do there seem to be soft spots all over Jillian’s head?
What type of Down syndrome does she have?
Are we feeding her the right amount?
Why does one eye seem to be lazy?
Dr. DeBlasis offered reassurance. She was sure the soft spots would close. Jillian has trisomy 21, the most common form of Down syndrome. Jillian was eating properly. We were told to feed her formula every three hours, four ounces at a time. She should gain one ounce a day. The lazy eye was no cause for alarm.
The doctor noted that Jillian had a small umbilical hernia that should disappear by age five.
She asked that we bring Jillian back in a week, and Kerry’s hieroglyphics kept us straight about each appointment.
11/7, Dr. DeBlasis: Weight, 6 pounds, 12 ounces
Good muscle tone
Weight gain OK. Check again in two weeks
Put silver nitrate on belly button to cauterize it. (Not completely closed yet.) Check for any oozing to indicate it’s still not closed.
See back in two weeks.
We ordered our days around these notes. They were the blueprint for how we’d begin the lifetime task of building the best Jillian. New, enthusiastic parents want to do everything right. The totally dependent life they’ve created deserves nothing less.
It was the same with Jillian, only more so because of an extra chromosome. We fretted over feedings and naps and having a consistent bedtime. We kept
She didn’t know what was going on. She had no idea there was a chance that, if she didn’t respond to the aerosol treatments and if she kept losing weight, she’d be put on a ventilator, and that could cause brain damage.
We wore masks in the room even though we really didn’twant to. We didn’t want Jillian to be scared. When Kelly came to visit his little sister, he remained in the hall, waving at her from the window.
The monitors beeped and buzzed. Aural terror. The machine that measured the oxygen concentration in Jillian’s blood was especially horrific. It had a habit of beeping several times an hour, usually after Jillian had shifted in her crib and moved the monitor wires. Each time, a nurse would come in, shut it off and tell us not to worry.
Kerry got the message. After a day or so, she calmly told a nurse that the “stupid oxygen machine” was going off again.
I wasn’t able to do that. I couldn’t rein in my fear. Every time the oxygen machine beeped, I reacted as if I’d been stabbed. It was the soundtrack of my despair. I wondered if it would ever stop. I began to see the infernal beeping machine as a metaphor for the rest of our lives.
We’d been doing okay, coping. The therapies were starting, Jillian was on a schedule of eating, napping, dancing with me and going to bed. Kelly was in preschool. A calming normalcy had returned. After a few months, we wanted nothing more than for the world to stop spinning so fast.
Kerry kept detailed notes during those first several weeks, handwritten in pencil in a short, spiral notebook. The jottings helped her keep track of what the whir of doctors and therapists were saying. They also slowed down the world. As such, they were therapy, too:
10/31, Weight, 6 pounds, 6 ounces
9:30: Dr. Perez, echocardiogram at Children’s Hospital
1:00: Dr. DeBlasis, two-week checkup, PKV retest
EKG, Dr. Schwartz. Right side of the heart apparently enlarged. Sonogram needed, to see if opening between right and left side has closed. Small hole between chambers should close by itself. Re-exam in 3 months.
I took Jillian to the 1:00 p.m. appointment with Dr. Nancy DeBlasis, Jillian’s pediatrician. I was armed with Kerry’s questions:
Why do there seem to be soft spots all over Jillian’s head?
What type of Down syndrome does she have?
Are we feeding her the right amount?
Why does one eye seem to be lazy?
Dr. DeBlasis offered reassurance. She was sure the soft spots would close. Jillian has trisomy 21, the most common form of Down syndrome. Jillian was eating properly. We were told to feed her formula every three hours, four ounces at a time. She should gain one ounce a day. The lazy eye was no cause for alarm.
The doctor noted that Jillian had a small umbilical hernia that should disappear by age five.
She asked that we bring Jillian back in a week, and Kerry’s hieroglyphics kept us straight about each appointment.
11/7, Dr. DeBlasis: Weight, 6 pounds, 12 ounces
Good muscle tone
Weight gain OK. Check again in two weeks
Put silver nitrate on belly button to cauterize it. (Not completely closed yet.) Check for any oozing to indicate it’s still not closed.
See back in two weeks.
We ordered our days around these notes. They were the blueprint for how we’d begin the lifetime task of building the best Jillian. New, enthusiastic parents want to do everything right. The totally dependent life they’ve created deserves nothing less.
It was the same with Jillian, only more so because of an extra chromosome. We fretted over feedings and naps and having a consistent bedtime. We kept
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