Dec 20, 2012

One Last night- John's thoughts

My last night with Mia

On the worst night of my life, there was a small miracle.  So you can properly understand the significance, I need to start at the beginning.  

When Mia was waiting for a heart transplant in the ICU for 4 long months, I was usually in our home town of Puyallup about an hour away from Seattle Children's Hospital.  I tried to maintain my job and care for the kids at night.  A wonderful friend from our church and later Mimi's mom watched our kids, making this possible.  When I could, I would come visit Mia and Mimi at the hospital.  This was a very trying time for us.  You can imagine the stress of trying to juggle life while also trying to keep your child alive, wondering if she will make it another day.  Well, something I haven't shared often, but is very real is the guilt I felt.  You see, I had a hard time bonding with Mia.  Each time I would visit, I felt so out of place.  Mimi pretty much had become a skilled nurse since she lived there and cared for her daily.  I, on the other hand would show up and feel really out of place.  I usually didn't really feel like I understood much of what was going on, there were so many tubes and wires and machines etc that it was overwhelming, and to be honest it was frightening.  I held her four times in the first four months of her life.  When the nurses would put her in my lap, it seemed like Mia would desat, alarms began beeping, all the tubes would become tangled and messy.  It was upsetting to me and I eventually felt like it was too much stress on me and on Mia's little body to try and hold her.  What I realized at the time is that the reason I couldn't connect very well with my child is because of lack of physical touch.  Have you ever heard of the 5 love languages?  Hands down, mine is physical touch.  I think I appreciate all of the different love languages, but for a deep connection, the type I have with my kids and wife, physical closeness is a necessary ingredient.  I held her hand and would stroke her hair, but I longed to connect on a deeper level.
I remember those months, as I lay in bed trying to fall asleep.  The lonliness.  I eventually would go crawl in bed with Jensen or Ellie and learned that I could snuggle up and fall asleep almost instantly.  This evolved into me scooping them up out of their bed as they slept late at night and putting them into my bed.  Sleep once again came quite easily.  Boy, you should have seen Mimi's response to the utter destruction of our children's well trained sleep habits when she finally came home with Mia.

During that time I remember feeling the dread of the possibility that Mia would go to heaven before I got to hold her properly.  That she would go before I could snuggle her, let her sleep in my arms.  It is hard to describe, but with each of my children as I have been able to hold them this way, it is as if I am at such peace that my breathing slows and my heart feels such peace.   I think that many parents know exactly what I am talking about.  Well, Mia survived and she came home.  She grew to be one of the sweetest, softest little girls I have ever met.  

Fast forward to present time.  Each night at around one a.m. Mia would wake up and come into our room.  It took us about 4 years to break Jensen and Ellie of the habit of trying to climb into our bed at night, but Mia was well aware that if she came over to my side of the bed she was guaranteed a warm welcome.  I loved these nightly snuggles.  I am the type of person that simply sleeps better in what I call a bear hug.  I would scoop up my little angel and hold her tight with both arms wrapped.  Something Mia would do that I miss terribly is how she always said "I missed you today" any time I would see her.  Well, in the night should would wake me up as she would ever so softly put her hand on my cheek and would quietly say "I missed you" and slip back into her sleep.  So sweet.  And on nights where I just couldn't fall asleep, I would go snuggle her and somehow sleep would quickly overtake me.  Nights have become terrible for me.  I can't sleep.  I typically collapse around 4 a.m. on most nights.  It is just so hard at night.  Things slow down, my mind keeps replaying all of my sorrow that I feel, and my snuggle buddy isn't available.  She doesn't live here any more.  She is safe, I know that she is ok, I know exactly where she is.  I wish this gave me more comfort but literally I can't sleep.  I need to hold her, for our hearts to connect, just as I had waited for and was blessed with as she came home to us, and grew up to be such a big girl.  

And so, there I am in Florida, standing at Mia's bedside, unable to hold her, knowing that there was very little time left for her on this earth.  She is hooked up to the ventilator, the ECMO heart machine, and many others.  I can't pick her up.  I can't scoop her up into my arms.  I thank God that I was inspired to go to nursing school.  I found that this time I no longer felt intimidated by the environment, by the machines and tubes.  The mystery of the equipment had evaporated into familiarity.  It is like, in a sense, I didn't even see them there, just my little angel.  I am so grateful that I was able to focus on Mia and that this aspect was no longer a stress to me.  My heart was broken and I couldn't believe that my baby would leave this world in a way that I could not hold her.  
Now to the miracle.  We are in Florida, in the Cardiac ICU.  A place where patients are in critical condition, nurses are very particular and rightly so.  Well, each night I would say to the night nurse, "Hey, just so you know, the day nurse told me I could bring another bed in and set it by Mia so that we can snuggle."  Boy, the reactions I got were something to behold.  I knew that I would get this reaction, because lets be honest, the ICU is not a place where this kind of thing goes on.  The sheer amount of machinery, tight quarters, high acuity of the patients etc makes it a place that isn't really appropriate to do this sort of thing.  I knew what they would say, but I enjoyed getting the shocked look on their face and immediate protest.  Well, on the third night, the last night I will have on earth with my perfect little girl, I got a different sort of answer.  There was a new nurse.  As I laid the trap, there was no look of disapproval.  She didn't say anything, just looked at me thoughtfully.  I told her I was kidding, that I knew it was unrealistic, but I did say that I truly wished it could be.  An hour later I return to the room and I see a bed sitting outside of Mia's room.  I look at the nurse and she smiled and quietly told me that she was pretty confident that she was going to make it happen.  I wept.  This wonderful person was making it happen.  She told me that her strategy was that when the head physician passed by, she would ask.  The bed was already there, he would be able to literally see the bed, and visualize how it would fit into the room.  He said yes.  Of course he did!  I love that this wonderful human being of a nurse thought "how can I get this done?" instead of reasons why it wouldn't work.  I asked around and no one had any recollection this sort of thing being allowed in the ICU.  It took just one person to say, "but why not?" I tell you this, I will remember her with gratitude until the day I die.  She gave me a gift that no one else on the planet had access to.  She made the effort.  I took Jensen and Ellie to get a late night snack and get them to bed.  I came back to Mia's room around 1 a.m. and there seemed to be some excitement as I approached.  There were several different staff members in different groups, many I hadn't even met before, all smiling from ear to ear, some tearing up.  Each of them seemed to be waiting for me.  I stop at the door and look in to see Mimi fast asleep next to our girl.  At a time when we were living a nightmare, I actually saw something wonderful.  Mimi seemed to be sleeping peacefully, both hands softly holding Mia's hand and little forearm.  These people too had fallen in love with our little girl and knew that they were witnessing something special.  I know in healthcare people get a little bit calloused, and to some point it is necessary to protect oneself emotionally, but I know that on that night they understood that our lives were shattered.  That Mia was special and that she was loved infinitely.  

Mimi woke me halfway through the night and let me have a turn.  I laid down beside her.  I held her hand with my right.  My left hand wrested on her chest, feeling her heart beat strong and steady.  My heart was full.  I slept soundly one last time.  As I write this it is nearing 5 a.m.  I continue to look for peace.  For a way to be able to lay down without feeling like an elephant is sitting on my chest.  It hurts more at night.