In The Big City

Tony, my husband, and I made it to John Hopkins the day after Trinity arrived. The drive didn't take as long as I thought it would. We went through the tunnel under the harbor to enter into Baltimore. I normally don't like tunnels and big bridges, but this time it was different. I had the window down as we entered into the tunnel. As we drove through it, there was this loud sound echoing in the tunnel from all the cars zooming through it(which I guess it why most people have the windows rolled up). At that moment it was such a relief for me.

It was all the anger and screaming of unfairness that I had wanted to do since Trinity was born. Up until then all I felt was sadness which I let out when I woke in the morning and in the shower. The rest of the time, I tried to put on the air of someone who has it all together, and is ready to face all the challenges in life. Put for those few seconds in the tunnel (which seemed like forever), my heart was screaming.

After taking some wrong turns and figuring out parking, we made it to the NICU at John Hopkins. Trinity was already settled in. Amy, our hospital social worker, was immediately at Trinity's bedside. I was wisked off to the Children's Home to check in for our short 2 night stay. After we were then free to meet with the teams of doctors and stay at her bedside.

How different this hospital operated from my local hospital. The "air" seemed a bit colder there at times, but the amount of attention that Trinity was receiving was amazing.

Trinity's trial and problems became a lot clearer in those three day / two nights
Alot of information that I wasn't ready to hear - but I took in with a logical mind and asked lots of question - and then processed and broke down in the isolation of the shower where no one could hear.

I will not bore you with lengthy explanations of her conditions - those can be easily googled for more information

From the endocrinologist - Trinity is suffering from Diabetes Insipidus and she is not able to regulate her body temperature
From the genetics fellow - this is most likely resulting from a new mutation of genes from Trinity, not passed down through the family
From the neurologist - Trinity has Semilobar Holoprosencephaly

What this means for her and us, we don't know yet. Trinity will tell us in her own time.

She is currently receiving hormone replacements for the Diabetes Insipidus twice a day and her sodium level is only being checked once a day, just two days ago she was being check every four hours with a heel stick so this is good news.

They have no survival rate information - no answers on what the future holds for Trinity - just a lot of wait and see.

Trinity turned 2 weeks on the 7th of November, 2006. I wonder if her celebrations will be in weeks or months - or if they will be in years.