Tuesday, February 12, 2013

Double Jepardy

Recently a mother at my daughter's daycare gave birth at 32 weeks.  I didn't know much about her before now except that her daughter and mine are besties with crush on one of the boys at daycare.  So when the daycare guru told me the news I tried to comb my memory for what she looked like although I knew her daughter.  I needed to picture her face so that I could keep her in my mind as  I thought positive thoughts surrounding her situation.

By all accounts at this point her preemie son is doing well and making the gains he should in the NICU.  Upon hearing this news I felt a warmth in my soul and confident about a favorable outcome.

When I picked up Lorelei today she was there with her mom picking up her daughter.  She looked as strong as a mommy could in her circumstances.  I reached over and told her that they were in our prayers.  I also conveyed that I had been where she's at and I feel her worry and stress.  I asked her what hospital her son was at and she named the same hospital Trey was born at which means the same NICU.

My blood went cold....

My stomach began to knot when I asked  her if his doctor looked like George Carlin to which she replied yes and told me his name, a name that I literally blocked because when I try to recall it I can only think that he looks like George Carlin and his last name starts with an M.

My eyes misted as she told me how awesome and forthcoming he was and how glad she was that he was their doctor.  All I heard in my head between her words was "HE LIED TO US!!!!!!". 

Of course I would never say anything to her, it would be cruel, but i SO wanted to so that he was kept in check.  My silence crumbled me. 

All this time our daughters were chasing each other around the room giggling, their brothers enduring so much and they didn't know.

I bided my time until after they left then I spoke privately with the daycare guru.  I NEEDED to tell someone although in hind sight maybe I shouldn't have, this boy will be in her daycare soon of us, one of her sweeties.  (I just apologized to her!). She was shocked, not knowing that part of our story. I told her I would not say anything but I wished I could to protect her child.

When my husband got home, I told him and he had some choice  words.  My husband was always the one to explain what the doctors were saying about Trey.  When our son was transferred to the Children's hospital, his interpretation of the exact words we heard, "We have a feeling you weren't told the whole story", was: we were lied to.

Long story short, Trey was born 6 weeks early and was not breathing.  They recessitated him for 90 minutes to get him stable.  All the while my husband was holding wires and tubes during every coding,  a number he swears never to reveal to me. What we did not know that this extreme course of action cause his heart, already frail from CHARGE, too much strain which effected his brain causing brain damage.  He should have died the night he was born but that option was not on the table according to his doctor, the first of many lives.

This is such the glass half full or empty moment: Did the lie lead to the 13 days we were able to spend with him?   Was that time worth the lie and the suffering of all involved, including the hope we felt? 

Most say our son did not suffer, I disagree whole heartedly!!  He was so calm when I was around because he had known me the last 8 1/2 months.  With his Daddy he grabbed on for dear life, knowing him but never experiencing him until that point.  After our visits the nursing staff had to spend time settling him down. He knew we were there and we were stressed and sad about his state.  Yes he was sedated but he could not cry out in pain if he wanted to.  Now that I think on it, despite the fluids pumped into him he always looked slightly blue in color, like he wasn't getting what he needed.  Being that he was the product of the love of my husband and I,  his heart and soul hurt for us.  I think he held on so he could be released in the capable hands of a staff that actually cared.

There again the question haunts me.  Were his days here for us and were they worth his suffering and ours?  I guess that is one question only Trey can answer.

For now, I hope that this doctor that looks like George Carlin is doing a better job with this baby and family than he did mine.  Until then I pray for him and his family.

I ask all who are reading this do as well.

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