Saturday, April 29, 2017

The Perfect Plan Comes Unraveled

By midday the next day (Monday) the NICU doctor had an idea of what Jones's symptoms might be pointing to, Noonan Syndrome. Something I had never heard of and nobody in the NICU knew much about. I had a strange feeling the doctor had a consult with Dr. Google to come up with an idea.
She was standing with me when I was told of the possible Noonan diagnosis. She had not heard of it either, but I trusted they could give him all the care he might need. She was a NICU nurse after all.
Jones had not improved even 24 hours after birth. It had been said by staff that some babies just need a little help after leaving the womb, or some babies born by C-section need a little help because all the mucous isn't squeezed out. I wondered how much a "little" was supposed to be? 24 hours and no improvement? Maybe he would be released from NICU later that day or the next morning. Time was ticking for us to say our hello's and goodbye.
The hours were slipping away, Jones was not improving. It was now Tuesday and the agency coordinator came to visit, and discuss signing the Termination of Parental Rights (TPR) papers as the 72 hour minimum was drawing near. The coordinator visited Jones in the NICU with Her and I, she asked if she take some photos. I wasn't sure why she needed a photo, but I was ok with it. This wasn't a quick photo, it felt like she was taking careful specific photos from different angles.  Although it's possible I read too much into it, but a weird vibe just came over me. A vibe that made me feel as if I was the only person in the room who didn't know something.

Tuesday evening the coordinator called and asked how I was feeling about everything going on, I told her I was very overwhelmed and confused. I was also angry at the incompetence of the doctors who reviewed my case and all..ALL the tests I had done! How was something potentially so serious totally missed and overlooked? Incompetence!! Moving forward, I asked the coordinator how They were processing this information? They were still on board right? 

The coordinator's next words I was not prepared for...

They are not sure, but they are taking this evening to think and pray hard for guidance if this is a situation they can move forward with. 

Um, ok. I really didn't know what else to say.

I sat in my bed and began to wonder what I would do with this baby? Would I just take him home? I was not prepared, and had nothing for a baby. I had the two gift bags of a few things I had bought, and free samples I brought for Them. Was transition care my only logical choice? Could I just make do for a week until I went through profiles of other families? I stayed awake most of night worrying and stressing. How could this be happening?

***Side note: transition care is basically a private foster home. Regardless of how many pretty bows put on it by agencies, it is a private foster home employed by the agency to hold babies until either legal issues are resolved or they are matched with a family.

I finally just took a breath and decided to rest until we could all talk the next day.

To Be Continued.....