|We had anticipated the next part - that she would be taken away and
tended to, not like in the movies where they lay the baby right on your
chest immediately. We waited, holding each other for what seemed like forever.
We heard a cry. Then nothing but the doctors and nurses calling out procedural
terms. Finally, a neonatal specialist came to us, and she explained what
they had done. The baby had been in distress and as expected had trouble
breathing, so a breathing tube had been inserted, which was why she was
not crying now. She was fine, but she needed to show us something. My heart
sank - her face was unreadable.
"See, her fingers and toes, they are together. I have seen this
before and it is correctable. Otherwise she is doing ok. I will get you
some information on this right away. We will see how the baby does, but
we may have to transfer her [across town] to Richland....." Our baby
disappeared and Denise came back shortly and helped clean Cathie up, and
we somehow got back to our room, then we were transferred to a regular
room. We had about 15 minutes together before people started coming in
- doctors, nurses (Denise had gone off shift, with a promise to see us
very soon), social workers, then parents, friends. No one knew quite what
to say, least of all us. Certainly congratulations were in order, but there
was an overwhelming mixture of emotions. I held together until I was alone
in a conference room with just my parents, then I broke down for a few
minutes. After some comforting and encouraging words from them, I was ready
to go on, determined to make it work, to fix everything.
We had to decide on a name. We thought we had plenty of time, and Cat
had been fooling around with trendy names. Then she decided, well, she
looked more like a Lizzie. Elizabeth.
Denise came back
in mid morning, and had a long talk with us, after running everyone else
out. No one knew, she said, more than her, how it was to be different.
She said that our daughter was beautiful. No one had said that, not even
us. Yes, she WAS beautiful, and she was our daughter. She told us that
our child could do anything in life that anyone else could do, and that
everyone is different in some way. Her being there was exactly what we
needed. We took a real long look at the situation and we knew she was right.
Denise gave us the encouragement we needed, when no one else knew what
to say, when we did not even know what we wanted to hear. Denise was off-duty,
but went to check on Elizabeth for us, and while she was gone, we chose
the middle name - and our daughter became Elizabeth Denise Sears, born
April 3, 1992, weighing in at a hefty 3 lbs 12 oz, 17 inches long.
About 10, a knock on the door, and "someone here wants to see you..."
It was Lizzie in an plastic enclosure called an isolette. She needed to
be transferred, so she could receive the best care possible. She would
be leaving in a few minutes, so say bye bye! We really looked at her for
the first time, and she was beautiful, but wow what a face. Lizzie was
transferred to Richland Memorial Hospital Neonatal Unit, where she would
spend the next seven weeks of her life, and we would get a complete medical
At this point, we still did not know what Lizzie's condition was called.
The neonatologist came by that morning and explained Apert syndrome to
us, and gave us a single page about Apert from a 1960 medical reference
book called something like "Human Deformities." She apologized
but said it was all she could find at the moment, and that she would get
better information at Richland. The page made us resolve that we would
do everything possible to help Lizzie. I did not know where to devote my
time - should I stay with Cathie, or should I go across town to be with
Lizzie? I stayed with Cathie until early evening, then went to see our
Intensive Care Unit was very intimidating - not exactly a room full of
newborns in cozy bassinets. First, I had to identify myself through an
intercom. Then, a nurse came out and taught me how to do a surgical scrub
of my hands and arms. Then after putting on a gown, I was led down a hall
and into a room full of babies in isolettes, each attached to various monitors
and tubes. Everything was very strange, new, different. When I saw Elizabeth,
I was a bit overwhelmed to say the least. She was so tiny. She was laying
on her tummy sleeping. How in the world can all these babies sleep with
all these monitors going, I wondered. I met the nurse practitioner, and
she went over all of the monitors with me, showed me what they did, and
how Lizzie's condition was at the moment. She was fine, but the main problem
was she needed help breathing, so she still had her breathing tube. I left
after a couple of hours standing by her box, just quietly resting my hand
on her tiny back. Even with all the distractions, I felt very much at peace
with her. I slipped out and returned to Cathie, and gave her a full report.