27 November 2011


The strangeness of my day-to-day life is masked as normal through unending repetition until I have a moment like this: I was on my way out the door to a yoga class, the first in six months or so, when the doctor I had paged earlier in the day called back. Lula spat up some brown mystery gunk overnight and it showed up in her residuals (basically her stomach contents back up through her g-tube into a large syringe- not for the squeamish) so I called the GI for her thoughts. She wanted to see Lula before Thanksgiving so she thought it best that I take her to the ER in Queens that day. I said ok, hung up, and went to yoga.

This is not what most people do, is it? A doctor says your child needs to go to the ER and you go to yoga first? It's not that I was ignoring any urgency-the doctor didn't want to see her until the afternoon- it's the fact that I was able to detach enough from the situation to go to yoga.  One thing I've never been good at is compartmentalizing my life, but when everything is an emergency it's awkward finding ways to fit the rest of your life amid the crises. I find myself vacillating between and abundance of panic and an eerie indifference towards the same recurring events.  That day was a day for indifference, or not so much indifference, but distance.

Yesterday we were again in the ER. This time Bellevue, this time for labored breathing. Friday night we had to put Lula on oxygen because she was wheezing and pulling her breath in an out as though she were breathing through a straw, but I fell asleep fine and slept hard. I have moved beyond being kept up with worry and into sleeping deeply to escape it. I woke up feeling jarred knowing we were not going to have the Saturday we had hoped for, so I had coffee and cereal, read about a baby who was rescued from a fire on Thanksgiving in the paper and then called the pulmonologist.

The Bellevue ER was great, and I was the polar opposite of my last time at Bellevue. I let the events wash over me and made little attempt to control anything.  It was an extremely quiet day and the staff was fantastic and patient and thoughtful.  I mostly sat holding Lu and then my friend Sharda came by for a visit - it is a true friend indeed who gives up a lovely Saturday afternoon to sit in the windowless Peds ER holding a sick baby.

They kept her overnight, and best of all they allowed us to have our night nurse come and stay with her.  This was a huge advance for us because the night shift in the hospital is hell if you need to get any sleep at all. Our night nurse Beverly is tireless, attentive, a bit OCD (in a good way) and knows Lula better than we do during the night.  She came to relieve m at 10:30 and immediately started rearranging things.  She made Lula a nest from blankets and sheets and got her settled.  I never thought I would be able to leave my baby in the hospital but I am coming to terms with the fact that raising Lula really is going to take a village, and that I am going to have to be OK with some self preservation at the expense of being with Lula all the time.

Sam is with her today and she is doing really well. Sleeping and peaceful.  Hopefully she will be home tomorrow.

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