In three days, I had gained back all of the fluid the reductive amnio had removed for me. Six pounds in such a short time... then more and more as the days passed. On the actual date that I was 30 weeks along, my body was technically under the stress of a 36 week pregnancy. That left four weeks from the date of my last appointment until I would most likely go into labor. It was a scary thought. We hadn't finalized plans at that time and we weren't ready to face the ordeal of birth just yet.
Thankfully, it's been a week and no particularly poignant signs of labor. We met with Dr Breland and he suggested we get another reductive amnio to ease the strain. He was going to look into what it would take to get the necessary tools required for the procedure, but he wasn't sure we could actually go through with it here in town. I've been dealing with the pain and haven't felt the absolute need to get the procedure done again. My hips are badly pinched and they do their wonderful socket-jumping routine quite often. It gets hard to breathe, mostly at night, and my enormous belly has grown exponentially in just a few days. My body was so stressed one night that my leg randomly cramped up and I managed to pull a muscle while trying to relax it. I'm a mess. Walking more than a few feet is nearly impossible now and I'm back to maneuvering around in public in a wheelchair.
My hormones are absolutely crazy and I find myself falling apart at the smallest things. Our children have been coming down with random fevers the past few days, and our daughter's new symptoms had me so panicked, I literally collapsed into tears while hiding away in her room. It's nothing serious, in fact it was just a few mosquito bites, but the fact that it -could- be something serious had me inconsolable. I was fine after just a few minutes of the absurdity, but it shows just how nuts the whole situation has made me. When you realize that your children -can- actually die, it puts a terrible strain on every waking day. I'm terrified something stupid is going to happen and I'm going to lose another one of them. Every time we're in the car, I'm sure we're going to crash. Anytime they climb too high on the slide, I'm sure they're going to fall. Anytime they disappear around an aisle, I'm sure I've seen them for the last time. I'm in constant panic mode. My body is already pushed to it's limit and now my mind is getting that way, too.
To sort everything out and make sure we were ready, we visited the funeral home today. Felicia, the woman handling the arrangements for us, was sweet as can be and was really very understanding about our babbling and complete lack of knowledge. We picked a casket right away, signed the necessary paperwork and asked a few dumb questions. When Felicia asked us if we had any songs we wanted to play at the service, we were dumbfounded. What do you play for someone who's never heard music? She has no favorite song and we can't exactly pick out a tune that reminds us of her, since we haven't met her yet. There were just a lot of little things that usually happen at a funeral that -won't- be happening at hers. We still need to plan the programs, but everything else is done. We looked through some examples of programs and were shocked at how many infant funerals they had organized. Many of the front covers were photos of deceased children, covered in makeup and posed gracefully. It was horrible. All I kept thinking was, "We can't put her picture on the front." Felicia treated that fact with great poise and offered us a few suggestions.. rubber ducks, clouds, her name in yellow, things like that. I'll be working on putting something together for it later tonight. It's a daunting task.
All together, the funeral is only going to cost $1,400. That's a HUGE chunk off of what we thought it was going to cost, but the funeral home isn't charging us for any of the services. They're only charging what it's going to cost to pay for it - the price of the casket, the price of the plot in the cemetery and the payment to the gravediggers. Everything else is free and we couldn't be more thankful.
So, now, it's all ready. It's just up to Beckett when she wants to show up and start the terrible process. Every day I'm sure is -the- day, but we still manage to go about our lives relatively normally. We've finished decorating for christmas and our children even got to see Santa today. We're working on our recipes for thanksgiving and i'm especially thankful that we have the sanity to do so.
Monday, November 23, 2009
Saturday, November 14, 2009
Reduction Amnio
We left for Pensacola at five thirty in the morning and managed to still be fifteen minutes late to the appointment. Dr Dobak was swamped yesterday though, so it wasn't any great detriment to him or his staff. Donna, the nurse who always takes my vitals, talked with me a bit in the beginning of the visit. We joked about her funky socks, discussed the pains of the pregnancy and I was horrified to find that I had gained six pounds in just under a week. The buildup of fluid was stacking at an unimaginable rate. Six pounds doesn't seem like a lot, but when you add it to the amount of fluid I already had and consider that it was all packed into my uterus, it's a terrifying reality.
We waited a while more after meeting with Donna, then were put into a room with two ultrasound students from the nearby university. They talked back and forth about lunch plans, recording their hours.... things I couldn't believe they were chatting about while in an enclosed room with a frightened mother of a dying baby. I guess they hadn't been through their sensitivity training yet. They were decent gophers, however, and fetched me water a few times throughout the visit. We sat for nearly an hour in preparation. An ultrasound technician and a second nurse finally came in to start the fun. We have new pictures of Beckett thanks to the tech, though there was so much fluid that most of each shot is just blackness. The nurse was a great help in relieving the tension. She joked about the forms we had to sign and the warning symptoms of infection.. she seemed generally concerned for my well-being, and not just physically. She promised me motrin after the procedure, showed me all of the equipment and was very sweet about answering all of my silly questions.
When Dr Dobak made it in, we got the same tempered, compassionate treatment we always get from him. He sees a lot of very scary things every day and he seems to understand that each of his patients need to be sheltered from that and comforted at every turn. He told us exactly what was going to happen during the procedure and explained things to us as they were going on. They continuously monitored Beckett to make sure she stayed safe. The first step was to clean the skin on my belly to protect from infection. Then, a quick bee-sting shot to numb the first few layers of skin against the enormous needle they were going to stick me with. A few moments of waiting, then the big needle - at first it was nothing, and then this gigantic popping sensation and a pain I've never felt in my life. My legs went numb, my eyes flashed white and I was sure I was passing out. Imeediately, the fluid began to flow out of the needle and it soaked my left side. A clear tubing was placed on the needle and led the fluid into a series of glass bottles for measurement. The pain never let up and was soon accompanied by a severe, constant cramping. Terrified, I babbled on and on, trying to stay conscious. The procedure halted for a moment or so as Beckett became curious and reached for the needle. Everyone got quiet... he moved the needle and watched the monitor, and eventually, Beckett moved on and let him continue his work. In total, they removed two liters of fluid from me. Her 'pool' had been filled with 39 units of fluid in the beginning (anything over 30 is dangerous) and was down to a meager 26 by the end of the twenty minute ordeal. It ended with a sort of draining noise that reminded me of a bath tub.
The change was immediate. My stomach was four or five inches smaller and I could actually see my belly-button. My clothes no longer fit, I could barely walk and the contractions started without a moments hesitation.They cleaned me as best they could, bandaged me and put me in a room to monitor the contractions. We stayed there for an additional hour, gritting through the pain and watching as my body struggled to return to normal. It was scary to think that Beckett could be born right there if my body reacted too drastically. We had just messed with the delicate balance of the womb and it was a very real possibility that the stress would just be too much. Thankfully, the contractions waned out to several moments apart and became bearable. There was still pain, but I wouldn't be delivering on that day.
We left the office a memento - a Beckett bear, from Borders. Dr Dobak and the nurses that worked with us were happy to have the stuffed animal and displayed her proudly on the front station. It was nice to know that she'll be there with them through their difficult careers. Donna hugged us before we left, wishing us the best of luck, just as Dr Dobak had.
I could barely walk when it was all said and done. The contractions, though lessened, continued through the day. We managed to drop off the books and toys we brought to donate to the children's ward and that made the day so much better. I could finally breathe without the pressure of all that fluid and my hips no longer hurt under the strain. My stomach was sore and bruished, but I could take in a breath, stand up straight and even bend to buckle my seat belt. It was amazing.
Leaving Pensacola wasn't a sad event like it usually is. I was glad to be less full and excited to see my toes. I could cross my legs in the car and for that I was seriously grateful. I slept better, even laying on my back for a few minutes, and could stand without issue. I'm still terribly sore, but I was able to get out in the backyard and play.. even if only for ten minutes or so. I walked around in a store (not sitting in a wheelchair like usual) and danced in the aisles. I haven't been able to do that for weeks.
The tightening in my stomach is threatening to return, though. I'm afraid Dr Dobak may have been painfully accurate in his estimation that the fluid reduction will only provide me relief for four days, or so. Beckett is a pro at creating the fluid around her. It poses a whole host of issues I'm not ready to get back to. Early birth, organ obstruction, fatality... We have enough to worry about without the threat of amniotic fluid doing us both in.
For now, Beckett and I are going to bed, along with two Beckett Bears that happened to make their way into our room. :) Things, for now, are okay.
We waited a while more after meeting with Donna, then were put into a room with two ultrasound students from the nearby university. They talked back and forth about lunch plans, recording their hours.... things I couldn't believe they were chatting about while in an enclosed room with a frightened mother of a dying baby. I guess they hadn't been through their sensitivity training yet. They were decent gophers, however, and fetched me water a few times throughout the visit. We sat for nearly an hour in preparation. An ultrasound technician and a second nurse finally came in to start the fun. We have new pictures of Beckett thanks to the tech, though there was so much fluid that most of each shot is just blackness. The nurse was a great help in relieving the tension. She joked about the forms we had to sign and the warning symptoms of infection.. she seemed generally concerned for my well-being, and not just physically. She promised me motrin after the procedure, showed me all of the equipment and was very sweet about answering all of my silly questions.
When Dr Dobak made it in, we got the same tempered, compassionate treatment we always get from him. He sees a lot of very scary things every day and he seems to understand that each of his patients need to be sheltered from that and comforted at every turn. He told us exactly what was going to happen during the procedure and explained things to us as they were going on. They continuously monitored Beckett to make sure she stayed safe. The first step was to clean the skin on my belly to protect from infection. Then, a quick bee-sting shot to numb the first few layers of skin against the enormous needle they were going to stick me with. A few moments of waiting, then the big needle - at first it was nothing, and then this gigantic popping sensation and a pain I've never felt in my life. My legs went numb, my eyes flashed white and I was sure I was passing out. Imeediately, the fluid began to flow out of the needle and it soaked my left side. A clear tubing was placed on the needle and led the fluid into a series of glass bottles for measurement. The pain never let up and was soon accompanied by a severe, constant cramping. Terrified, I babbled on and on, trying to stay conscious. The procedure halted for a moment or so as Beckett became curious and reached for the needle. Everyone got quiet... he moved the needle and watched the monitor, and eventually, Beckett moved on and let him continue his work. In total, they removed two liters of fluid from me. Her 'pool' had been filled with 39 units of fluid in the beginning (anything over 30 is dangerous) and was down to a meager 26 by the end of the twenty minute ordeal. It ended with a sort of draining noise that reminded me of a bath tub.
The change was immediate. My stomach was four or five inches smaller and I could actually see my belly-button. My clothes no longer fit, I could barely walk and the contractions started without a moments hesitation.They cleaned me as best they could, bandaged me and put me in a room to monitor the contractions. We stayed there for an additional hour, gritting through the pain and watching as my body struggled to return to normal. It was scary to think that Beckett could be born right there if my body reacted too drastically. We had just messed with the delicate balance of the womb and it was a very real possibility that the stress would just be too much. Thankfully, the contractions waned out to several moments apart and became bearable. There was still pain, but I wouldn't be delivering on that day.
We left the office a memento - a Beckett bear, from Borders. Dr Dobak and the nurses that worked with us were happy to have the stuffed animal and displayed her proudly on the front station. It was nice to know that she'll be there with them through their difficult careers. Donna hugged us before we left, wishing us the best of luck, just as Dr Dobak had.
I could barely walk when it was all said and done. The contractions, though lessened, continued through the day. We managed to drop off the books and toys we brought to donate to the children's ward and that made the day so much better. I could finally breathe without the pressure of all that fluid and my hips no longer hurt under the strain. My stomach was sore and bruished, but I could take in a breath, stand up straight and even bend to buckle my seat belt. It was amazing.
Leaving Pensacola wasn't a sad event like it usually is. I was glad to be less full and excited to see my toes. I could cross my legs in the car and for that I was seriously grateful. I slept better, even laying on my back for a few minutes, and could stand without issue. I'm still terribly sore, but I was able to get out in the backyard and play.. even if only for ten minutes or so. I walked around in a store (not sitting in a wheelchair like usual) and danced in the aisles. I haven't been able to do that for weeks.
The tightening in my stomach is threatening to return, though. I'm afraid Dr Dobak may have been painfully accurate in his estimation that the fluid reduction will only provide me relief for four days, or so. Beckett is a pro at creating the fluid around her. It poses a whole host of issues I'm not ready to get back to. Early birth, organ obstruction, fatality... We have enough to worry about without the threat of amniotic fluid doing us both in.
For now, Beckett and I are going to bed, along with two Beckett Bears that happened to make their way into our room. :) Things, for now, are okay.
Tuesday, November 10, 2009
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.
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.
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