The day Maddie died

There are several things about the day that Maddie died that I haven't shared publicly. 

Most obviously are pictures.  Luke and I have decided to keep all of her final pictures offline and share only with family and close friends.  These are the most intimate reminders we have of her final hours and just have not come to a place where it feels right to publish them.  But  I do want to let you know that we have a lot of pictures of her from August 7th and that I am so grateful to Now I Lay Me Down to Sleep for being there when we needed them most and providing us with these precious keepsakes.  Here is a shameless plug for the photographer who volunteered her services that night: http://www.photosbynano.com/

We also have a bunch of pictures of the funeral.  I asked a friend from work to document the day, knowing that it would be a blur and I would need pictures to remember.  He did a great job capturing not only the events of the day, but the emotions, special moments and relationships.  Here is a shameless plug for him: http://www.facebook.com/randyandronphotography

There are some burdens from Maddie's death that weigh heavily on my shoulders.  The night the PICC line started to leak, the night she failed her extubation, the night everything seemed to start spiraling out of control, was the first and only time Maddie had a nurse I did not trust.  I knew i didn't trust her by 9PM, but didn't ask for a new nurse until 11PM.  I stayed that night until 1AM.  She was/is a good nurse.  But she was very by the book, one thing at a time and easily distracted.  I knew Maddie was a complex little girl and needed someone who could multi-task, think about consequences and trust her own judgement.  This nurse was obsessing about how to set up Maddie's lines (IV, central and PICC) and charting.  She seemed unaware of the respiratory problems I was witnessing, unconcerned or even defensive when I pointed them out.  At one point, she completely left the room for about 2 minutes after having checked Maddie's breathing mask.  She didn't notice (and neither did I for about 60 seconds) that the mask came off when she checked it and Maddie was struggling to do all of the work on her own. 

Of course, the fact that she was obsessing about Maddie's lines turned out to be a good thing - I know she did her due diligence and the PICC line leak was not the result of flippant decisions.  And once I spoke to the charge nurse at 11PM, Maddie's bed became the center of wonderful team work with at least 1, usually 2 nurses that I did trust helping in her care.  When I left to go home, Maddie was stable, intubated and resting quietly.  But it is likely her PICC line had already leaked up to 80 cc of TPN into her chest and I didn't notice either.  I'm her mommy and I didn't know something was so wrong when I went to sleep that night.

I was able to discuss most of my concerns the next day with our favorite neonatalogist and one of our favorite nurses.  Both of them felt confident that nothing I had been bothered by the night before contributing to Maddie's ongoing problems. 

I don't blame this nurse (or anyone at UCSF for that matter) for anything that happened to Maddie.  The staff at UCSF truly was phenomenal and even a bad nurse there is a great nurse elsewhere.  But I do wonder if another nurse would have pushed to reintubated earlier in the evening.  If another nurse would have noticed the leak sooner, taken different actions, done something to change the course of events.  Something that would not have allowed Maddie's little body to be pushed so far that she had nothing left to give.  Of course, these are questions that can never be answered but I have to work through in my grief in order to get to a place of acceptance. 

The day Maddie died, I didn't get to the hospital until after 11AM.  I slept in.  Played with Dillan in the Ronald McDonald house playroom.  I think I even took time to shave my legs that morning.  Mom, Dillan and I were just dropping my brother off at the hospital before making a Target run when Luke called and told me to get there immediately.  I hadn't planned on going in until after 3 or 4 that afternoon.  I just didn't know how much ground she had lost.  I had no idea how bad things really had gotten and that we were mere hours away from making the worst decisions of our lives.

We had the opportunity to do more for Maddie.  We could have put her on ECMO (life support).  But we were cautioned she may never come off of it and that her brain damage was already pretty severe.  Placing her on ECMO at that point would have been considered "Medical Heroics." Defeated, we accepted this and made the decision to let her go.  Now, I constantly wonder how bad the brain damage really was.  Was it complete?  Would she just be blind, maybe a little slow?  Would she have had any quality of life worth living if we had done ECMO?  Would a few days on ECMO have been enough for her to flush our the TPN on her own, recover from the pneumonia and start fighting her way back toward health?  We never even asked about dialysis once they told us her kidneys were gone.  Would that have helped?  Questions I didn't have the sense to ask the doctors, but probably would still wonder about if I had. 

As she was dying in our arms, for a moment she opened her eyes and moved a little.  I can't remember exactly if she moved a hand or yawned or cried, but i remember her showing some signs of life.  In what may have been her last moments of consciousness, her mommy didn't tell her it was ok and that I love her.  I burst into tears and told her that she wasn't making it any easier.  She had been in a medical coma since Saturday morning and these two things happened as the medication started to wear off.  It wasn't until weeks later, when reading about the death of another precious baby, that I realized we never checked to see if she was still in there.  We didn't test her reflexes or open her eyes to see if her pupils dilated. We didn't ask for a brain scan or ultrasound to see how much activity was still taking place.

I am left constantly wondering if we gave her enough of a chance to fight for herself.  If we really did all that we could to give her every chance to live. 

So I go back to the pictures.  They remind me how far gone she really was that day.  How ravaged her little body was by the time she died.  That she really was a different baby, clearly sick, clearly exhausted, clearly dying.  That as much I as torture myself with these what ifs and should ofs and how comes, there really were no other options.  That we could have done more to sustain her body, but that Maddie was already gone, never to return.

There is more I need to say, but I am now exhausted.  It will all have to wait until my mind can form what is left into words that my fingers can type.