The Dilemma

I've been putting off this post for a few days now. It never gets easier to try to explain any of this. I guess I want to start by saying I never intended for many people to get ahold of this blog and specifically meant it for the family members who wanted to be kept up to date on all of our news. It just seemed a little less daunting than writing emails to each individual aunt, cousin or sibling. I suppose that in a way, it's become my personal outlet and more than just a shouting point for news. I've said a lot of things here that I'm not able to say out loud. Talking to anyone in person is just sort of hit or miss when it comes to this subject. Sometimes I feel like explaining everything to strangers, and sometimes I feel like never speaking of it again. It depends on the day, or the time of day, or the mood... really, it depends on a thousand different circumstances.

Being pregnant comes with a lot of responsibility, not just to ourselves or the babies we're carrying, but to society. Every day that I'm out in public, someone takes it upon herself to talk to me about my bulging baby bump. People ask me when I'm due, cackle about all the great details about having little girls and say other normally encouraging things. I know these are common occurrences and thousands of pregnant women waddle around in this city everyday.. but when your pregnancy doesn't have a happy ending, the conversations tend to grate. Even the people who don't talk directly to me are pissing me off lately. There are some people who will just comment as I walk by, "Oh, looks like someone's having a baby soon!" It's disheartening. I know I'm being a huge whiner right now, but I can't bitch about this in person. Anytime someone brings her up, I want to tell them what's really going on, but I know that won't help anything. It won't make me feel any better and it will definitely upset whoever is trying to congratulate me. It's not their fault I'm losing Beckett but I -hate- that people won't let me have my privacy. It's not my fault the whole world can see that I'm pregnant but I can't take the talks anymore. I cry about the situation everyday and it's harder to keep a dry face out in public when no one will let me have a moment to think of something else besides this impending doom. So, here's a tip for anyone who's reading.. if you see a pregnant woman, think of the possibilities. She may be putting the child up for adoption... It may be an unwanted pregnancy because of some violent circumstance.. there may be a grim ending, like in our case. Most often, pregnancies are a celebrated, happy event.. But if you run into a situation like mine, these 'happy' little remarks can really devastate a grieving mother. If you can't help yourself, just smile and talk about it when she's out of earshot. Try to remember that everyone wants and needs privacy. We can't put a giant canvas over our bellies to shield our babies from the world.

Now that the rant is over, on to the news.

We got lost as soon as we entered Pensacola, which was stressful enough on it's own. The MRI didn't take nearly as long as I thought it would. It was loud and intrusive... made my earrings tug toward magnets, which was weird. We joked that I had been magnetized and was a superhero.. In fact, I'm pretty sure I was controlling the elevators in that building. Beckett held relatively still during the process and they only had to redo one of the pictures. It was a long wait until our second appointment on that particular day.. While we were sitting in the waiting room, the news from Ft Hood was being announced on the TV. We watched anxiously, debating details back and forth. It was humbling to know that there was a great tragedy happening across the country while we were seated safely in an office, awaiting the news about children who hadn't even made it into this strange world. Politics and TV's aside, I started listening to some of the other families in the room talk about their babies. One set of grandparents were "whispering" rather loudly about their daughter losing one of her unborn twins. They were obviously fearful for the second baby and started talking about the terrible return policies for online companies. Apparently, they had bought two of everything, including ultra-expensive mattresses and cribs. Because they couldn't return the second set of merchandise, they had decided against buying anything else, "just in case.." It was awful. Another group consisting of a woman, her mother and her sister, talked openly about certain friends of theirs who had just lost babies. About DNC's and second opinions... treating the situation like they had just burned a chicken and would have to throw it out before trying again. It was all sort of... haphazard. A certain feel of, "Eh, oh well" was emanating in the room and it made me sick. By the time we actually got to see Dr Dobak, I was ready for some good news.

There were two long ultrasounds done and we were able to see a 3D view of Beckett. I'll be posting pictures later on Facebook for those of you who are interested. We were told that she has "Fryn's Syndrome", which I know I've been misspelling for weeks. It's a defect caused by a mutated gene and it can explain all of Beckett's problems. With it, she has no survival rate at all. The chance is literally zero and that's hard to stomach. Hope is sort of a therapy when things get particularly unbearable, but when you're told that there is no chance at all of pulling through... That is when it gets really tough. You don't have any sort of cushion to fall back on and it all comes down to whether or not you're strong enough to watch your child die.

I'm going to be painfully honest here and I'm sorry to anyone this offends. The Fryn's is badly malforming her features. It's known to bend bones and obstruct normal growth.. in Beckett's case, it has enlarged one side of her forehead above her right eye and sunken in the other side. She has these.. protrusions... and that kitty nose.. and when I saw her in 3D for the first time, the only thing my sickened heart could relate it to was Quasimodo from Disney's Hunchback of Notre Dame. Poor Beckett is being so disfigured by this mutated gene and all I want to do is tell her how gorgeous she is.

For some reason (I didn't understand all of the information that was being given to me at the time), her cleft lip is making it harder for her to swallow the fluid around her and practice all those normal bodily functions. She's still creating a lot of fluid though, which is filling up and expanding to a dangerous level. Dr Dobak wants to remove quite a bit of the fluid, over a liter and a half, because the pressure is making it increasingly harder to breathe. I'm not sure of the details.. how long I can go before my organs become too mashed up to function properly or how long she can last being pinned in by all that fluid. In some cases, that amount of fluid can be fatal to a fetus, especially one with so many ailments. Her little heart is so flat and bound at this point... I'm worried about her even making it to delivery. Dr Dobak asked me to come back in and have the fluid removed in a few days.. I'm sure I will, but its a frightening task. The procedure is a lot like an amnio, he's told us, except that it will take nearly ten minutes. It carries all the same risks... eruption, infection, fetal fatality.. They are all minor risks, but 'minor' and 'rare' seem to be in all of our vocabularies lately. I'm the size of someone who's at 40 weeks gestation, but I still have two months to go. It's painful to move at all, carrying all of this unnecessary garbage along with Beckett. I've noticed a lot of other symptoms lately, too... Vomiting every night, swollen legs and numbness in my limbs.. It hurts more and more to breathe during certain hours of the day. I know I'll be calling Pensacola about the appointment soon, I'm just not ready for it yet.

The last part of the visit with Dr Dobak was a sort of question and answer session about her organs. She has one kidney left which seems to be in decent condition but because she has Fryn's Syndrome, they won't accept any part of her as viable. They fear that using her in any donation could possibly pass on the disease. I wasn't ready to hear that. I really thought that it was our only option... that it had to be the reason we were being so strained - that she would eventually help someone who couldn't help themselves. It's not working out that way. The entire pregnancy is ending in a few moments of interaction with a child who will never grow up. We can't bring her home with us and now, no one else will take part of her either. Our only option is a funeral, which didn't seem feasible in the first place. We're in no condition to pay for a six thousand dollar burial but we -cannot- simply hand her over to the medical staff for 'disposal'. She's our baby. We have to bury her. That's what happens when people die... We bury them. We have a ceremony, we visit, we remember... It's a matter of dignity. I'm not sure what we can do to be at peace with all of this, but we can afford to do nothing. The casket alone is $900 and the plot and ceremony can cost up to five thousand... and we're lost. We can't afford our own home at this point and we're barely managing to pay for all of these out of town appointments with specialists. My parents have been extremely helpful with making sure we get all the care we need, but we're all stretched just as far as we can go. I don't know how we're going to manage this. I'm usually very good at handling fundraisers, but it just seems macabre to set up a donation fund for a funeral. I understand asking for funding in medical needs... maybe for housing during hospitalization or assistance with surgical costs... but I've never heard of a funeral cause. I'm just... irrevocably lost.

There was more I wanted to say, but I can't think of it at this point. I'll update you when I remember.