Not Many Answers

Another appointment with Dr Breland and we're still waiting to see what will happen with Beckett. He asked us (as he does during each visit) if we were considering aborting her and without hesitation, we said no. It's the same each time. We never have to think about it. Just no.

His explanations were less optimistic than they were medical. He said Beckett doesn't have much lung tissue to speak of. The question we had about steroids maybe making a difference in her growth was shot down. Steroids will only enhance what tissue is there. It won't help her to -form- lungs, only to strengthen them, and what we gathered was that she isn't expected to even grow them.

He gave us instructions on what to do if I went into labor. He hypothesized that labor could start as early as two weeks from now. At that stage, a normal fetus would have an 80% chance of surviving outside of the womb. Beckett, however, has no chance at this stage in her development. We still don't know if her chances will improve, but we have another appointment in two weeks to check on her. Our follow up with Dr Dobak has yet to be scheduled. It's a long, arduous process and I'm a little out of breath from just thinking about it.

Breland says we will most likely be delivering her at St. Petersburg, nearly 8 hours away from where we live. It's the most capable facility for our situation. We're now faced with the sorts of questions that should never be asked of parents. If her brain functions, but she has no lungs, will we keep her on life support or just acquire comfort measures for the few moments she has? Will we even bother with life support if there is no lung tissue? Will we consider (if her brain improves in the next few weeks) surgery to correct her heart and diaphragm while she is still in the womb? The last question is... strange.... the process to operate on her while she's still inside me is a shakey, experimental one which happens to be very painful to both mother and baby. These are all questions we can't answer until we're faced with their respective burning bridges. We need more information. More tests are needed to ascertain what condition her organs are in and at only 5 months gestation, we're not sure we'll get the answers we need.

Beyond all the medical business, there are other equally painful ideas to sort through. When I think of Beckett, I imeediately think of her lip and what others will think of when they see her. Even the idea of an open casket is painful, not because I'm afraid of looking at her, but because I'm afraid of what others will feel. I have two beautiful, flawless children who don't have so much as a scar, much less a gaping hole for a top jaw. It's beyond reason that on top of the life-threatening issues she faces, she also has to harbour this monstrous sign of struggle and deformation. I want to take pictures of her whether she's alive or not and be able to show them off with pride! This is my baby girl and she fought harder in her short time than any of us ever have! I know no one will say a thing because everyone involved is family, extended-family and friends. I want people to look at her, unafraid, and understand how important she is. She is so much more than a statistical anomaly. She's an idea, a belief, a hope and a planned part of our family. Not a day goes by that someone doesn't stop me and say I have the most beautiful children - I don't want Beckett to be any different.

We're doing everything in our power to help her. We're seeing the best doctors, planning everything down to the tiniest detail for her benefit and working to make sure she is remembered in the best possible light if and when she passes. We still have her for now and every move she makes is a great comfort to me.

We expect more amnio results at the beginning of next week.