February 25, 2004

Monday, March 28, 2011

The difficult journey

Mollie did splendidly well at first.  She was even taken out of the ICU for a couple of days.  Everything seemed to be fine.  We met with the doctors the day I was released and talked about her further treatment.  They told us in the beginning that she would not live more than 24 hours without the embolization but now they felt we could hold off for awhile.  We concentrated on getting her to grow and learning about the chromosome disorder.  We met with the geneticist and were told that it wasn’t normally a hereditary thing but they wanted to check our DNA to see if there was anything that could tell them why she had the deletion.  She was missing a small part on one of her 13th chromosomes.  Our genetic tests came back normal so they believed it was a spontaneous event. 

I left the hospital on March 2nd and we visited every other day.  I called every morning and every evening to check on her and her progress.  My mom came to visit and help us out.  It was nice to have someone else there. 

The morning of March 17th, they called us saying that the doctors needed to meet with us.  Mollie wasn’t doing well at all and we needed to make some decisions.  I was so afraid to go see her.  When we walked in, she had a huge tube in her nose and was her skin was gray.  My heart broke, again.  We met with the doctors in a private room.  They told us that her heart wasn’t doing well and her oxygen levels were dropping.  The weight she had gained in the past 2 ½ weeks turned out to be just fluid retention.  Her heart was enlarged on one side, her liver was enlarged and her left eye was bulging out due to the fluid. 

The chromosome disorder made it difficult for her to gain weight quickly which is what they needed.  The smallest catheter was still too large for her tiny veins so they couldn’t do the embolization.  They were pretty sure that there had been too much damage to her lungs and heart for her to survive even if they did the embolization and they couldn’t occlude it all at once anyway.  They needed to know if we wanted to put her on life support.  I asked if she would live if she was on life support and they said only as long as she was on it.  We asked if they would give us a minute to pray and decide. 

They left the room and I burst into tears.  Every dream I had for her had been shattered.  I thought that God would heal her and that I would take her home and raise her.  I thought my toughest battle would be raising a child with a chromosome disorder who would probably never walk and never talk.  I was prepared for that.  Now, God was asking me to trust Him without knowing what would happen and with thinking that she would probably die.  He wanted me to Love Him and trust Him and give it all to Him even if she died.  I knew that I couldn’t make the decision to remove life support when the time came to let her die so we decided not to put her on.  We asked them to keep the current tube in and see what happened. 

At that point, I visited every day.  I was so very mad.  I felt God, and the doctors had let me down.  I kept making deals with God.  I told Him that if He let her live, I promised I would make every minute count.  I felt Him speak to my heart telling me, “she is alive now, make every minute count and trust that I know what is best”.  Finally I did that and it was so wonderful. 

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