All for Education

These past few weeks have been thankfully hectic. My brother brought his family down to visit for a week, and shortly after that my grandmother came down with an aunt I had not seen in years. I had time for little else, but I enjoyed the visits with family and welcomed the distraction from our everyday problems. (Auntie Cindy, the munchkins are STILL attached to their blankies - thank you thank you!)

We met with Breland a few days back and signed the paperwork for my tubal ligation surgery. They'll do the procedure the day after Beckett is born, whenever that may be. We're sure we don't wan't to try for another baby - there's a possibility this genetic mutation may still be present and it could very well affect any other children we conceive. It's a scary thought. This is all hard enough without having to think about another one of our babies struggling through the same thing. Beckett will be our last and that's how it's going to be.

We have two more appointments set up at Sacred Heart in Pensacola. I had originally planned on no longer visiting with them since we were told that there was nothing they could do to help her. I didn't want to have to drive out of town just so they could tell me again that she's sick and there's no chance for survival. These next few appointments are for a different purpose - the first is a fetal MRI (which is a lot more invasive than I thought it would be.) The pediatric neurosurgeon in Gainesville wants to look closely at Beckett's brain and discern exactly what sort of Dandy Walker syndrome she has. Whether the results will change his mind about the ECMO machine being used, I'm not sure but I'm not going to get my hopes up. The second appointment is to meet with Dr Dobak to discuss the procedure involved with donating her organs. We're not even sure they can be used at this point and during a recent ultrasound, we found that one of her kidneys had slipped into her chest cavity and would most likely not be viable. That leaves one kidney. Dr Dobak will have the answers and that's what I've been waiting for. I don't want her life to be JUST a tragic story - I want part of her to help someone.  We leave for Pensacola on Thursday, November 5th.

In an effort to educate people on Beckett's particular syndromes, we agreed to be shown to medical students at a college here in town. Ultrasound technicians and nurses filtered in all around us in a half emergency room, half classroom setting. They asked a lot of questions about our other children, about Beckett's prognosis and about our plans. An ultrasound was done, showing each of the defects. The students were quizzed during the ordeal and the administrators answered not-so-average questions that you wouldn't find in text books. Her little heart looks more squished than usual and I'm afraid it's not strong enough to hold out until delivery. There seem to be more organs stuffed into her chest, which isn't a good sign either. Nothing was too difficult to deal with until they started focusing on her hands. Beckett had the hiccups at that moment which was making her hand leap away from her mouth, then land back on it in some fetal version of peek-a-boo. It reminded me of my youngest child playing "where's the baby", and I couldn't help but cry. I can't get past the fact that I'll never see her do any of these normal baby things. I'll never be able to wrap her up in blankets, feed her or even play peek-a-boo. The stupid little things you get sick of when you have to do them everyday. It's an awful, sludgy feeling. Everyone at the event was very professional and the main administrator walked me to the elevator when it was all over. It was then that I noticed she was crying and I didn't know what to say to her. I sometimes forget that other people are affected by Beckett (or rather, the whole situation) and am dumbfounded when I have to comfort them. I hugged her and agreed to come back when I had an opportunity. There are always more students to teach.

On a happier note, the bookstore I previously worked for (Borders) has released it's holiday bear. It's a panda named Beckett. You can view the bear here. It's a huge coincidence that a company I worked for (and my father STILL works for) has designated this limited edition, brand new bear with my unborn baby's name as their holiday mascot. I'm always amazed at how the world works. My ex-supervisor bought one for me just yesterday, and I'm excited to have a forever reminder of our little girl.

More updates next week when we get back from Pensacola.