Sunday, October 14, 2012

Earth Angels

October 16, 2010
I have what I call Earth Angels. There's been angels to my rescue along my journey with you, Charles Patrick. My first Earth Angels were your Neena and Poppy when they just happened to stop by our house when I first received that devastating phone call. It still amazes me that they were in the neighborhood at that very minute.
My second Earth Angel was our school nurse. I was having such an emotional day a few days ago. I was sad, but it had just turned into irritability. I am pregnant you know. ;) Then of course, the guilt came along for being irritable. Hehe. Don't laugh at me, baby! So as I was saying, terrible day and our school nurse comes down to my classroom to give me some information about one of my students. I was on planning and as she was talking, a wave of emotions just overcame me and I just busted into tears! She hugged me and hugged me and said, "Oh baby, you're just going through so much, aren't you?"
I couldn't even talk because I was crying so hard. I finally pulled myself together and said, "Thank you for coming down here because I really needed someone right at this very moment. But I have no idea what you just told me."
We laughed and laughed. It was such a relief to just cry on someone's shoulder. I felt renewed. She was an Earth Angel to me because again, someone walked right to my aide right at the necessary moment.
Today I met my third Earth Angel. She is a perinatal nurse and she works with parents with poor prenatal diagnoses. She knows a lot about Trisomy 18. We have talked on the phone, but I'm so excited to finally meet her face to face. We met in Greenville, South Carolina at a bustling, busy Panera Bread Company. I'm sure it was so busy since it was a beautiful Fall day. She is such a nice lady. She gave us a planning notebook that will help us plan for you. Oh my goodness, how did she know that this teacher LOVES a notebook!!!
She told us a lot about what to expect. My biggest question for her was what we should do as far as surgeries after you are born. I go to the doctors offices and they ask, "What do you want for your child?"
Sometimes I just want to say, "I don't know, what do I want for my child? I've never had a baby before, I have NO IDEA what to expect even if this baby was healthy!"
I'm so torn. I want to be ready for the "survival surgeries" as they call them, but at the same time I'm not so sure how I feel about them. They will whisk you away from me as soon as you are born. I can't stand the thought of that. Of course, then I feel selfish. Would I be a neglectful mother if I don't let them whisk you away to that operating room? I don't want you to think that I don't want to try to save you! I do want to save you. I pray multiple times daily that you will be born alive. I need you to be born alive, Charles Patrick. I will do anything for you and if that means allowing the doctors to open your tiny little body up, I will. At the same time, the very thought scares me to death. I really don't know what to do. There is one thing I know. Charles Patrick, I know and love and understand enough about death and life after death to want to enjoy you while you are here. I will accept when its time for you to go.

I would rather you die in my arms than on a surgery table. 

As we talked to our sweet nurse, she gave me the confirmation that Trisomy 18 affects EVERY SINGLE CELL of your body. There are no amount of surgeries that could fix all that may be wrong with you. She mentioned something called comfort care. That means that the care you get will be care that brings you comfort. You will immediately be handed to mommy and we can enjoy you as much as we like. If you have a hard time breathing, they will use blow-by oxygen that will gently blow oxygen by your face to make your breathing a little easier. If you live long enough to get hungry, we will use a feeding tube down your nose as opposed to a surgically inserted feeding tube. If you show that you are able to sustain life, we can then discuss surgeries in our hospital room that will help make your life a little easier. All that she explained sounded exactly like what me and daddy want for you.
She talked to us a little more about how tiny you will be. She said that most T18 babies are only 3 or 4 pounds. Wow! That's so tiny! I just can't wait to see your sweet face.
When we left, I felt so refreshed. I had a planning NOTEBOOK, a purpose, a plan. I just feel so much more informed and I can't wait to get my birth plan on paper. There's still a billion questions, but I have some direction and I feel good about daddy's and my decisions. I promise I will do anything for you, sweet boy. I love you so much! I love every single chromosome, even that little extra one. He can't help that he's caused such a ruckus!


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