NG

I made a joke with another NICU mom that as a form of therapy for the parents they should let them smash one of the NICU monitors to pieces upon discharge. One really doesn't realize how wonderful it is to hold a baby who is unfettered by cords until holding one who is. One wrong move with Dezi and it's a chorus of beeps. I can't help but think that on some level he won't miss all that beeping when he comes home.

On his one month birthday he finally took a whole feed from the bottle. I was not prepared for the amount of time it might take for Desmond to eat as he should. I didn't know that eating required so much coordination of breath and while it's hard for me to comprehend it's clear that it really is a lot of work for a kid like Dezi. I've had moments of frustration this week. The attending physician in this NICU had mentioned to me on Wednesday that she wanted him to go home without a feeding tube. Knowing this, I felt that I could be patient this week. She left on Wednesday for Passover. So when I arrived on Friday and the nurse handed me a packet of papers and said, "read this. I'm going to show you how to pass a nasal gastric tube today" I heard a little crack in my heart. (The nurse doesn't know about my glass heart syndrome. How could she?) I couldn't help but to blurt out, "I'd like to talk to the Dr. please" and started strongly questioning her. The nurse is young. The nurse is Filipino (go figure.) She seems rattled by my questions and retreats to the desk and calls the Dr.

My logical self knows that Desmond needs to come home, tubes or no tubes. He is so alert. He is much more alert than the baby next to him even and they share a birthday. My logical self knows that once he is home I will be able to feed him and it will only be a matter of weeks before he gets the hang of it. My emotional self feels scared a little bit by the thought of having a baby at home with a tube coming out of his nose. I think about the questions people will ask me on the playground and I don't feel like answering them. I don't want to talk about CDH anymore or have people look at me like they feel sorry for me. I'd like for my life to resume now.

All that aside, I read the papers as I should. I learn how to measure the tube and how to apply the tape to his cheek. I learn how to push air into his stomach and use the tiny stethoscope to listen for the slight whooshing of air as it enters his belly. I practiced putting the NG tube into a doll and stood by his bed and gave the young, filipino nurse step by step instructions so that she could make sure I understood how to do everything. One time in college an ENT put a tiny camera into my nose and down my throat to look at my vocal cords. It did not hurt and I think about that as the nurse pushes the tube into Dezi's nose. Mahalia heard him cry a little bit and was worried. But he is a good baby, a quiet baby who does not complain much although he does have much to complain about, really, when you think of it, and he settled quickly.

Earlier in the week I bought a magazine to read on the train home from the hospital. It is Oprah's magazine and even though I have a problem with how she puts herself on the cover every single month I do enjoy looking at her products of choice. The woman has good taste. Anyhow, there's a beautiful piece inside that magazine called 'Spring Awakening' written by this guy named Rick Bass. Wouldn't you know, it's about the birth of his first daughter who stopped breathing during her first night of life. They had to put her in an incubator and he stared at the monitors sitting at her bedside all night long in case she woke up. I love most what he says about parenting, "What I think I felt, that next day, was a newness of responsibility: an utter and concrete reminder that I was no longer the most important person in the world–-that, in fact, I was nothing, and she was everything." I'm feeling it so hard right now and am reminding myself to be brave in the face of those things that seem scary to me.

Here's the link to the full article if you'd like to read it: http://www.oprah.com/article/omagazine/200904-omag-rick-bass

In other news, some really wonderful and generous friends pitched in to hire some cleaners to give our apartment a once over. If you're reading this now and are one of those people, please know that Shane and I are appreciative beyond words. It was such a relief to walk into a tidy and orderly home and it was a wonderful treat at the end of a tiring day.