How are you?
How was your day?
Mine was filled to overflowing with a little bit of everything.
Jason is reading a People magazine at the moment. That's something. I am sure this is the first People magazine he has ever even looked at. It's Kim Kardashian that intrigues him. He said, "She's photogenic." I said, "Say it like you mean it ... 'she's hot'." He didn't deny it. Rats.
When I left my house this morning I ran into my across the street neighbor. She was walking her dog. Jason helped them move in not too long ago but we haven't ever had a chance to get to know them other than to wave in passing. I stopped to tell her how beautiful I thought her dog was (because he really is beautiful) and she asked about my baby.
She didn't know Emily has been in the hospital and when I told her about all that has happened in Emily's life she got emotional and asked, "what can I do for you?" I never know how to answer that question and I told her we were okay. She asked if she could bring us dinner and I told her that we would appreciate that.
When we got home tonight there was soup on the stove and brownies in a pan. (My sister came to let our neighbor in the house.) My little family has been so blessed.
My brain is still spinning with all that was discussed today in regards to our Emily.
Emily had visits today from her cardiologist, her cardiothorasic surgeon, her nurse practitioner, and her GI doctor. In addition, the infectious disease people and the immunologists have been consulted.
"There is no easy solution," is how the GI doctor ended our conversation.
Here's what we're facing:
Emily can't take food.
She's on an IV nutrient called TPN.
Long term TPN use can cause serious problems with Emily's kidneys, especially in the first year of her life.
The longer Emily has the IV line the greater the chance of developing an infection, which could easily get into her heart, and that would be bad.
Emily needs food and or TPN to grow in order to be ready for her next surgery. (The goal all along has been to do her next surgery at 6 months.)
Emily's body will most likely not be able to tolerate food until after her next surgery.
Because who knew...the gut and the heart are related.
The solution everyone feels is Emily's best chance?
Fix her heart now.
Be still my heart.
Now? Open heart surgery again? Now? As in possibly this week? Is she even big enough? Can her heart handle another surgery? Are you SURE this is the best possible solution? Are you even sure fixing her heart will fix her gut?
These are all of the questions I asked when the nurse practitioner told me what was being considered.
I thought the idea of the feeding tube made me sick to my stomach. This takes being sick to my stomach to a whole new level.
I looked at Emily and said, "Girlie, this means you're never coming home."
Annie, the NP, said "Noelle, it means more time now, but so much less time in the future. If we can fix both her heart and her gut right now, she will go home a different baby. She may even get to drink from her bottle."
The decision hasn't been made.
The entire team of doctors will meet on Wednesday to discuss and weigh the pros and cons of every option.
Annie promised me that no decision would be made until they all felt sure it would be the best plan for Emily, and after we agreed with their decision.
Open heart surgery...again...possibly this week...
It's no wonder I clench my teeth at night.