March 27 2013
"The" Care Conference
After so many bouts of Rhino and a few pneumonia to keep us on our toes Madison was finally able to have a final cardiac cath in late February were Dr. Day discovered her Pulmonary Hypertension was non-responsive to nitric and had shown no improvement despite the closing of the PDA and ASD. It was decided to start her on two medications Bosatin and Iloprost. Both of these medications take a long time to work and sometimes they do not work at all.
On March 20th 2013 Madison contracted Rhino Virus again, as it had in June it inflamed her Pulmonary Hypertension but now showed to response to Nitric Oxide at 100% Oxygen and being sedated she was still only sating in the high eighties. At this point we were told we needed to have another care conference. There is a part of me that knew what they were going to tell us but I did not want to hear it.
On March 27, 2013 we walked into the NICU conference room to find all of our primary nurses, Ann Kamp our NNP Dr. Wiedamier the current attending physician, Dr Day and Our social worker. I knew when we walked in and Ann was crying that what I had feared was exactly what was about to happen. "the" care conference, the one every NICU Parent fears. I cannot tell you what this was like 14 months of fighting, praying, smiling, playing, hopeing, crying, getting angry being frustrated, watching her grow and become the Sweet beautiful amazing perfect little girl she was, 14 months to get to fall in love over and over, 14 months of rocking her to sleep and crying as I had to walk away with my only comfort being the hope that one day she could come home and now my only hope was being taken away. I was angry, I was sad, I was hurt I was upset I want to share with you the short poem I wrote just a few hours after this conference as I contemplated what this all meant.
How do you say goodbye to an angel
When she smiles up at you
And lifts her tiny hand for comfort
What can a mother do
How can I let go of my angel
She is all my life
She is my rock my hope my future
How can I ever say goodbye
Why must you leave me my sweet angel
Does Jesus need you to
Aren't there enough angels in heaven why must he take you
I will love you forever baby angel
You are my whole world
Up there you won't have to fight so hard
You are such a big girl
If you take my dear little angel
Lord just promise me
That next when I get to hold her
It will be for eternity
Thanks for sharing that Margaret. It brings back all the emotion of that awful day. Soooo glad it has turned into you guys being home with your beautiful, amazing Maddie Lou.
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