Explaining what happened

I'm not exactly sure how to explain the last 4 days but i want to try and let you know how and why Maddie went so quickly.

I want to start by saying that Luke and I are so thankful for God's mercy.  We have no regrets, no guilt and no "what ifs" that are consuming us.  We did everything we could to love Maddie and give her every chance possible to survive.  The staff at UCSF were amazing and we know they did everything they could too.  Our nurses, doctors and respiratory therapist were all so professional and competent and compassionate.  Our primary nurses became our family.  This was not anyone's fault or mistake or bad choice or anything like that.  As you'll read below, Maddie's fatal condition came out of left field and could not have been predicted or prevented.

The other day I wrote about going backward and talked about her TPN leaking into her chest.  This started as early as 9PM Friday night and didn't stop until 6AM Saturday morning.  A leak in the PICC line is rare and usually happens in Premies.  when it happens, Premies react a very specific way.  but because Maddie was term and twice the size of most Premies, she didn't present with any of the usual things.  We were use to seeing fluid in her chest because of the Chyle, her blood sugars never dropped and her swelling was slow to be visible. 

But TPN is caustic to the organs - it has to be delivered to the body a very specific way to not do damage.  The hours it was pooling in her chest cavity caused her organs to become irritated, probably inflamed.  We first started to see this when she started having trouble breathing.  NExt she stopped peeing.

As we progressed throughout the day on Saturday, we all thought she would pull through.  She had some major setbacks and was very sick, but improving.  She was still strong, still fighting and still responding to corrective treatments.  Throughout Saturday night, she was more or less stable, still responding and still fighting.

Unfortunately, by Sunday around lunch time, she stopped responding to treatments.  It got harder to keep her processing air the right way.  We brought Dillan in to say good bye, just in case, and sent him home with some amazing friends.

By dinner time, she had been so deprived of oxygen that she would never fully recover and, if she survived, have many long term damages.  We asked the doctors to do what they could but we were accepting of what we were seeing happen.  Maddie had stopped fighting.  She had stopped responding to treatment.  She was letting us know it was time.

We prayed for guidance and I very clearly heard God tell me that she was already with Him.  She was safe and we just needed to let her body go.  We had a private room with my family.  Everything was very beautiful and very calm.  Maddie was loved and held and at peace when she left us.  It was 9:31PM when I looked at the clock once i knew she was gone. 

We haven't made any arrangements yet but will post them here when we know.  We think we will keep everything small with immediate family and close friends only.  Please feel free to say goodbye to her in your own way.  I will post further remembrances and thoughts as I need to - this blog has been therapeutic for me from the very beginning.

Those of you expecting CDH babies or have them in the NICU, now is the time to check out.  This is not a process I want you to ever know.  We love you all and appreciate all of your support.