The NICU

After Levi was moved to the NICU I was trying to convince myself "everything is going to be okay."  It had to be. 

Nate went down to see what was going on and the baby was under a warmer.  The doctor said they were just going to keep an eye on him.  Meanwhile I was stuck in a bed hardly able to move.  As soon as I felt able to, I asked to be wheeled down to see and hold the baby.  They'd placed an IV in him and he was hooked up to all kinds of wires and cords.  Seeing my baby, the baby who'd just spent 9 months in my tummy, all hooked up like that, was one of the saddest moments of my life.  By about 6 or 7 pm the doctor in charge of the ICN at our hospital said he wanted to have him transported to UCSF to undergo testing.  Panic.  Testing for what??  They said he had low muscle tone and a few other issues presenting that should be looked at, and UCSF was the best place for it.  The Chaplain at the hospital came and asked if I wanted to talk.  By midnight Levi was being baptised by the hospital nun.  I held him and cried.  The fear inside of me is a feeling I can't even begin to describe. 

Throughout the night we waited and waited for the transport team to arrive.  Apparently it was a busy night.  They finally made it around noon Friday.  I was asked to be in my room while they got the baby all set up in the transporter and then they brought him in for me to say good bye before they left for San Francisco.  Seeing him get wheeled in, in a huge incubator machine with countless cords and wires, was absolutely devastating. 

Nate soon followed to UCSF to find out what was happening.  I was taking pain meds and on an emotional roller coaster, still trying to cling to an assumption that everything was going to be fine. Maybe it was just a traumatic birth experience and the baby needed time to adjust.  Maybe it was just benign hypotonia - low muscle tone that would eventually go away - as the ICN doctor had mentioned.  One of the ICN nurses had taken pictures of Levi to give me before he got transported.  I held onto those pictures of my baby and stared and cried.  In confusion, panic, fear... hope. 

Nate called to give me an update and it was during that call that I heard the words that were going to change my life.  Levi had been evaluated by neurologists and geneticists and they wanted to test him for various things, but they specifically wanted to test for something called "Prader Willi Syndrome".  Fear.  I immediately began scouring the internet.  I'd already read somewhat about it the night before when I'd been searching for information on babies with low tone, but I'd also read about cerebral palsy, down syndrome, and muscular dystrophy, among other things.  At this point I began thinking maybe Prader Willi Syndrome isn't so bad.  It seemed better than some of the other possibilities.  But I was sure he didn't have it.  He was going to start getting better and have absolutely nothing wrong with him.  We'd get released from the hospital in a few days being thankful for our healthy baby and the scare he'd put us through.... Right?

Friday night I was alone in the hospital and called Nate.  He said he wanted to be with me and that Levi was in good hands, so he came back up to Santa Rosa to spend the night with me.  That night we held each other in the hospital bed and wept together.  How could this be happening?  Saturday morning came and I began thinking about when I could get out of the hospital to go be with the baby.  I asked to be discharged early and eventually got to leave by around 5 pm.  We stopped at home to see Norah and pick up some clothing.  I walked into Levi's room - his nursery we'd worked so hard on, that I'd obsessed over decorating and making perfect - and fell to my knees and sobbed.  Why wasn't he here?  Why wasn't I putting him down in his crib?  Why isn't any of this happening like it was supposed to?!