Sunday, December 18, 2011

Our Journey to PICU part 2

It took a while for me to get back to this and much of this time is a blur in my mind but as part 1 is the most viewed page on my blog, I think the rest of this story needs to be told.

You can read part 1 HERE

All day I was talking to people and trying to take in what was happening.  I was striving to do everything I could to make milk for Kaylee and asking repeatedly to see the lactation consultant so I could just make sure I was doing everything I could but whenever I asked she was away at lunch or busy elsewhere.  Kaylee's read outs, features and symptoms were causing interest and cardiographers, radiographers, registrars and the odd medical student were all coming in and quietly, respectfully, asking questions or performing tests.  By mid-afternoon there was a tentative diagnosis of her heart condition - Tetralogy of Fallot with transposition of the major arteries.  The scariest of these was the transposition of the major arteries.  If this diagnosis was confirmed, it meant that without surgery Kaylee would probably die within the next 24 hours.  So arrangements were being made to fly Kaylee to Melbourne.  It was gently explained to me that Kaylee would need some very heavy duty drugs, sedated and intubated for transportation to Melbourne via. air ambulance and that I would have to go by commercial flight the next morning. Previously, I was rarely in a different room to my newborns.  Now, Kaylee was going to be in a different state.  Across a body of water.  With strangers.

I had kept in touch with Jon by phone during the day and when I got confirmation that Kaylee was flying out that night, he was on his way in with the other children and his parents.  When they arrived I explained the situation to Jon over the heads of the children before I ferried them in, two at a time, to meet their sister.  They all gently touched her and said a few words to her.  I hugged them and they went home.  I found out that the lactation consultant had seen me taking the children in to meet their sister and decided that speaking to her was not priority for me - and gone home.  To say I was furious would be the understatement of the century.  While the lactation consultant would probably not have told me anything I did not know I needed to hear it all said by someone with that official title so I knew I had done everything I could do to protect my milk supply.  At that moment, I could do three things for my baby:  touch her, sing to her and make milk for her and I was determined to do all three of these things in an exemplary manner.

Trying to describe what was happening inside and out that day is like trying to describe Niagra Falls using a glass of water collected from there.  I could write for days and still not encapsulate what was going on in its entirety.  The ache within me was my daughter was leaving without me.  I would not be there to protect her and advocate for her.  At this time there was no place in my heart and mind to even consider anything outside loving her, keeping her breathing, keeping her heart beating and getting nutrition into her.  There were a thousand things to take in and think about.  Vicky, the young registrar who had first seen Kaylee, put her arm accross my shoulders as I sat at Kaylee's side told me that the doctor who would be transporting Kaylee was a friend of hers who was excellent.  She started to get Kaylee ready for me to have a quick cuddle.  Someone asked if I was "allowed" to.  Vicky shot a withering glance in their direction and stated simply "She is her mother." I cradled her in my arms for a moment and tried to push every ounce of my strength through my skin into her frail little body.  We placed her back on the warmer.  Over and over again I sang to Kaylee.  When I was pregnant I had been given Psalm 121 and the hymn "When He Cometh" to hold in my heart and I quoted the verses over and over to myself and sang the hymn to Kaylee over and over. 

The picture in my mind was that people would arrive and shove a tube down my baby's throat and take her away.  when the doctor and nurse for transport arrived they wheeled in a monstrous looking contraption strapped on a stretcher.  I cringed inwardly at its bulk and harsh appearance.  Then the swivelled it around and in the midst of all that bulk and technology, there was a little nest for my baby girl with a sweet, pink, bunny rug.  The doctor was sweet and funny with long dark hair and she joked around with the nurse who was tall with short curly hair and was equally sweet and funny.  I left the room while Kaylee was being intubated.  Some twins down the hall bellowed their displeasure and I wished fervently that my daughter could be that loud.  After an age I could go back in to see Kaylee and I saw something that meant more to me than words can express.  The doctor, Katherine, had wiped Kaylee's eyes.  In amidst all the urgent medical stuff, she had taken time to make Kaylee comfortable.  As I sat there she fiddled with Kaylee's long, thick hair and crooned to her lovingly and within me I felt something relax.  I chose to trust her with my baby.

I have since talked to Katherine about this and tried to convey to me how much that small act of wiping Kaylee's eyes meant to me.  I don't think I fully did - I am not sure it is possible to.

Jon arrived just as we were transferring Kaylee over into her little pink nest and we both said goodbye.  They wheeled her out and onto the lift.  We got downstairs a few minutes later in time to watch the stretcher load into the back of the ambulance.  The image of Kaylee - tiny, naked, frail and intubated - laying in her little warm, pink nest in the middle of all that equipment being loaded onto the ambulance against an inky black backdrop of night sky will forever be etched into my mind.  As they closed the door and drove away we got into the car and sat for a moment.  We held hands.  We prayed.  And then we drove home.


DaughterofEve said...

Thankyou, Jess, for giving us an echo of your picture to hold...

LMD said...

wow, thankyou for sharing Jess.