Thursday, June 27, 2013

Maggie's first weeks

Thanks for all the positive feedback for the Maggie World: Fractured Fairy Tale post. (One friend suggested that would be a good title for a book if I ever write one.)  That was a general description of what it's like to spend time in the NICU with your baby and then go home.

Today I want to give you a more specific story about that time for us.  It really became a strange kind of normal for us.  I snapped a picture of the boys  and Steve visiting with Maggie (still on the vent) in Steve's arms. It was our reality.

 Maggie was in the Newborn Intensive Care Unit for 11 weeks and three days. That's 80 days. A lot of things happen in any 80 day stretch, but in that particular one,  we celebrated St Patricks' Day, Easter, Eddie's 6th Birthday, the loss of his first tooth, our 8th wedding anniversary and the birth of our nephew Jeff. We came home for a few weeks but went back in on Tim's 4th birthday.  Maggie probably had surgery 5 or 6 times in those 80 days. There were scary days, boring days and great days. You quickly learn the mantra of the NICU. One step forward, two steps back. The steps forward were great, the steps back were not.

 I finally got to hold her when she was about three weeks old. That was probably the best day. But there were a lot of good days. At some point it shifted becoming  two steps forward and one step back and I started to really experience hope.

 The most delicate of the surgeries was an esophageal anastimosis (say that 5 times fast) and the recovery required that Maggie be kept paralyzed for several days. That was the hardest part, for sure. Maggie could not get off the breathing tube and the days they tried and it failed were also very very bad days.

The unit was pretty small, maybe 8 or 9 babies in an open bay with one small alcove for a single baby. The called the alcove "the apartment." After a few weeks Maggie was moved to the apartment and we made that place our own. In fact, one of the nurses actually put up a sign that said simply "Maggie's Apartment."

It was good we were off from the open bay a little. Privacy was a joke. I was there 10-12 hours a day and I knew how every child was doing and what new things they were trying. Not on purpose, mind you, but it was open and I was just sitting there. In Maggie's apartment I could ignore things that weren't my business (but I was still close enough to know when things got interesting. OK, I'm ashamed of myself.)

I saw babies come and go. I saw babies come and stay. I saw babies who didn't make it. I saw moms who were stoic and moms who were hysterical and there were moms I never saw who weren't going to be part of their baby's life. It was heartbreaking.

I heard over and over again that despite her medical complications Maggie was a "lucky" child.

And I started to believe it.

 Maggie was born at California Pacific Medical Center (CPMC) on the Pacific Campus. All three of my kids were born in that building, but I'm not sure when it became CPMC. Two hospital had merged into one. The hospital closed that birthing unit shortly after Maggie was born and all birthing and newborn services were consolidating at the California Campus, which old San Franciscans still called Children's. Maggie was one of the last babies in the Pacific campus. By the time she was discharged from the NICU there were only two babies left in that unit.

The combining of the units was not without drama though. The nurses at the California Campus were unionized and those at the Pacific campus were not. For weeks before the move, I heard all about the nurses' concerns for who would be employed and who would not. They were all to go to a meeting in order of seniority and find out their fates. The anticipation of this meeting was very stressful for all the nurses. The meeting was to take place on May 20.

Initially the doctors told us we could go home on May 19. This was 78 days in and I was so excited to leave, but I couldn't believe the timing. I had grown very close to these nurses and I was concerned for their professional futures. Instead of showing excitement at going home, I said "You are kidding. I don't even get to see how all this labor drama plays out." We all started to laugh at the absurdity of it all. For unrelated reasons we didn't get out of there for another couple of days so I did know that all my friends were taken care of.

When the day arrived  to go home I was as afraid as I have ever been. I knew I was ready but doing all of Maggie's care on my own was going to be very different. The nurses and doctors had more faith in me that I did in myself. They knew Maggie was going to do fine and that I understood how to care for her. I so wanted to prove them right.

They bought a cake and all the respiratory therapists, pharmacists, doctors and nurses who had dealt with us in the course of the 80 days passed by. My own pediatrician brought us a bottle of wine. I sad my goodbyes to all these people who had kept me going and kept Maggie alive.  I felt like Dorothy about to board that balloon and head back to Kansas leaving the scarecrow and the tin man and the lion behind.

Oh, if only I could find the picture I am looking for. I know I have it here somewhere and when I find it I will add it.  The nurse altered the sign that said Maggie's apartment writing across it in red:


That's when I knew it was really time to go and somehow we would figure it out.

I'll let you know when that happens.

1 comment:

  1. Well, I certainly missed this post and the previous ones -- I'm not sure why! Your story is riveting --


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