Chapter 4: The begining of a terrifying and beautiful bond

I held Addie for the first time on Christmas Day when she was 3 days old.  She was breathing completely on her own, on ‘room air’ as we quickly learned to call it in the hospital.  She was super skinny and still red and had a little IV taped to her hand but I had never seen anything more beautiful.  I was so proud holding my daughter in my arms. She settled in to the crook of my arm nicely and stared at me with her gorgeous eyes.  I would stay up at the hospital for hours with nothing to do but hold her and stare into her eyes.  Holding her felt easy and it made the lonliness associated with their hospital stay just seem to melt away.

Addie still has that effect on me.  At two and a half, she has learned how to throw her arms around my neck and press her forehead against mine and give me kisses.  She slides under my arm with her blanket when she is tired and we both smile contentedly as she fits into me as well as she always has.  And just like that first Christmas holding her, I stare at her in amazement and my stress, sadness and worry just shed off of me. 

I held Max for the first time on New Year’s Eve when he was 9 days old.  I did not get to hold him on that Christmas Day.  Instead I watched as he coughed up blood and looked terrified.  When he was 3 days old, he had a lung bleed and I was there when blood started coming up his breathing tube and all his vitals started to drop.  I was still wobbling around after my C section and completely intimidated and confused by the NICU.  It was not yet a familiar environment and I did not understand what any of the alarms going off meant.  I had never felt as helpless as I did in that moment.  I remember feeling that in one day I had experienced the two extremes in motherhood- I had felt the joy that love for your child brings as I held Addie and I had felt the terror that love for your child brings as I watched Max struggle for air.  I knew that day that the love of a mother is truly indescribable and unlike anything I had ever experienced.

After I went home that night, the nurse called me in the very late hours of the night to tell me with relief that Max's brain ultrasound following this event did not show any bleeds.   She was easing a fear I had not known to have.  So new to my changed world, my mind did not yet know to worry about brain damage following such an incident.  I had merely assumed once he was stable and no longer coughing up blood things would be okay again.  While I had not known there was any reason to fear otherwise, I nonetheless took her reassurance gladly and laid that issue to rest.  For over a year at least- until a team of neurologists would take us right back to that night and cause us to question whether that Christmas lung bleed was in fact the beginning of a new set of heartaches that we could not have imagined that night.  Now I look at that event differently, now I feel much less sure of what really happened to Max at three days old.  But at the time, the event seemed significant only because it showed me just how fragile my tiny new babies were. 

Max stabilized by the next morning but he was put on ‘time out’ for several days afterwards.  He was on very high ventilator settings and given lots of sedatives and we were supposed to let him rest and minimize stress for him. I would watch him there in his incubator all tiny and still and felt scared to even touch him.  I was thankful I was able to hold Addie and passed time with her in my arms watching him and worrying about him.

Finally when he was nine days old he came off the ventilator and went on to CPAP which is a breathing machine that goes over the nose instead of down the throat and that provides less support.  The nurse decided I could hold him and I was so excited.  She carefully placed him on my chest, trying to position the tubes from the breathing machine just right.  Max arched his back repeatedly and tried to pull his legs up to make himself into a little ball.  He seemed unsettled and I was nervous.  I moved him around and adjusted myself and talked to him and soothed him and wanted more than anything to make sure my arms were a comfortable place for him.  I remember feeling so much love and so much concern not knowing how to get him comfortable.  I remember feeling like he was the most precious tiny fragile thing I had ever held and that I loved him fiercely but not without fear.

And Max still has that effect on me.  Now as I lift his heavy floppy body into my arms, I take care to make sure I position him just right.  He still arches and squirms continuously and I move my body and his to make sure he is as comfortable as possible.  Unlike then when I was not sure if he liked being in my arms, he now will flash me a huge smile so I know that while finding a physically comfortable position is challenging, he is thrilled to be close to me.  But although far from tiny now, I still see him as the most precious fragile thing in the world.  I still worry about whether I am doing the right things for him and whether he is going to be okay.  

From the first time I held him, I have formed a terrifying and intense bond with Max.  I have known that he is precious and unique and fragile in a way that other babies are not.  I have longed to know how to soothe and protect and comfort him.  I have wanted to heal him.  I have wanted to provide a place of contentment for him.  And I have worried every single time.  I have held him and been scared of not doing the right things for him.  I have held him and not been able to stop the tears from falling as I do.  I have cradled him and simultaneously felt joy, fear, love and grief.  The way I would watch him that first week of his life, full of love and wonderment and so scared about whether he would be okay is still the way I look at him. 

Loving someone you are not sure you will get to keep is intense.  From the very beginning, Max’s future seemed uncertain and I have loved him not knowing.  And nothing has changed really.   It is still the most terrifying and beautiful bond in my life.