They're inducing me tomorrow at five in the morning. December 4th will be her birthday. It will also be the day she died. We've started packing for the hospital stay. Beckett's blankie is on the top of the suitcase, along with the ducky outfit we picked for her to wear in her casket.
No one is allowed in the delivery room, but visitors are welcomed after she's passed. We'll only have a few minutes with her while she's alive, so we'd like to keep it quiet. We're not trying to hurt anyone's feelings.. I just want to focus on her while we have her.
Her funeral is set for 10 in the morning on Wednesday. The public is welcomed. We'll all be meeting at Brock's funeral home on Hwy 22, here in Panama City. This is by no means a private funeral - if you feel like you need to come say goodbye, feel free. I know a lot of people have been keeping tabs on us and have involved themselves at an emotional level. I understand, I empathize and I thank you.
We love all of you and appreciate that you've come this far with us.
Thursday, December 3, 2009
Monday, November 23, 2009
Funeral Plans
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.
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.
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.
Thursday, October 29, 2009
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.
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.
Wednesday, October 7, 2009
She Has Fingers
As I'm sitting down to type this out, my stomach is already lurching. Anytime I actually have to think it all out and try to put it to words, my whole digestive system flares up angrilly. We left for Gainesville early in the morning of October 6th. Our first appointment that day was with Dr Richards (and his technicians) and the ultrasounds they performed took over two hours. The first technician was really very sweet - she would explain everything she was looking at during the ultrasound and was happy to point out that Beckett has fingers and toes and does not, in fact, have clubbed limbs. She even printed a little picture of five fingers waving at us and typed "Hi Mom And Dad!" on the sheet. When she scanned Beckett's face, I was horrified. She has a bilateral cleft palate, which means both nostrils flare down into an opening that leaves the entire top portion of her mouth agape. She has no top jaw to speak of. Just the tip of her nose and then nothing. The picture reminded me of a lion's face, so she imeediately became our little 'kitten'.
The second ultrasound was performed by Dr Richards himself. With him was a team consisting of a medical student and a resident who had been researching Beckett's strange case. The long hours were filled with medical jargon and terminology that we couldn't understand. They measured in depth the size of each of her organs, her brains, certain veins, ventricles and other various tidbits that we couldn't keep track of. There were two separate types of ultrasounds, and 'invasive' does not begin to describe the sort of procedures they were.
He sat down with us after speaking with his team and calmly made a list. One side of the list said "Things we like". It contained "Fingers", "Toes", "Kidneys"... not much else. The second side of the list said "Things we don't like." It filled the paper. He told us that she had Hydrocephalus, which is water on the brain. He also said that she was no normal case though, and that her brain was almost entirely fluid. The brain tissue was minimal - no more than a sliver against one wall. The diagrams he drew were pitiful. He said it meant she had a syndrome called "Dandy Walker". Her brain would not sustain much activity.
Her Diaphgragmatic hernia was not normal either, he explained. Her bowels, stomach, gall bladder and part of her liver were pushed into her chest, leaving one lung tiny and malformed with the other not even present. Her heart has a small malformation somewhere in the septem, but it wasn't anything life threatening. He then sent us on our way and we had to wait several hours before our second appointment with the pediatric surgeon.
We spent the time visiting the museum of natural history there on the campus of UF. We also strolled through the museum of art, had lunch at the cafe and cried over our meals. It was a beautiful setting. Butterflies floated all around, lizards sprang back and forth and large koi ponds were raised in geometric shapes to provide an artsy getaway for the college students. Everything was just too pretty and serene. I was mad at it for looking so normal. I was literally angry that the world was continuing to be just as great and stimulating while my baby was continuing her malformed struggle into creation. She was not pristine or perfect and how dare anything be sunny or gorgeous on a day like that.
When we entered the children's ward for our appointment, it hit us. There were sick children everywhere. Boys in wheelchairs, bald from their battles with cancer. Little girls with MS, laid back in strollers and drooling at their absent-minded mothers. The one that really got to Phil was a little boy I hadn't seen - an obviously mentally handicapped child in a wheelchair with one of his legs turned backward. Phil was actually fine with the sight until the boy started to cry, a pathetic little sound of desperation, and he could no longer take it. We were both miserable messes, crying and wiping futilly at tears we couldn't make go away.
The nurses finally took us back and started my vitals. The first asked quietly how I was doing and they passed my paperwork back and forth. They were all staring at me sadly and I knew that was a bad sign. These women deal with sick, terminally ill children every day, and they were taking pity on me. I held my breath. They moved us into a private room to wait for Dr Kayes and on the ceiling were hand-painted tiles from children who had stayed at the facility. One finger-drawn piece said "It may be hard, it may be rough, but you can do it! I know you can!" I lost it. I bawled and shrunk and clutched myself so tightly I thought I would suffocate. We were left alone for a long time in that room and I managed to straighten up enough to be polite when Dr Kayes finally came in.
He was friendly and looked us straight in the eye. He didn't start with anything medical. He asked us how long we had been married, what our other children were named and what they were like. He said he liked to get to know all of his families and he cared very much for each case he worked with. He referred to Beckett as "your little girl" and skirted around the issue of her brain for nearly a half hour. We talked about her lip and the plastic surgeries that would ensue We discussed the severity of her hernia and the size of her lungs. He has about thirty cases a year of Diaphragmatic Hernias, and in his experience, babies with lungs smaller than a .9 don't survive any kind of surgery. Beckett's lungs are a .6 but we still hadn't lost hope.
The details about the surgery to correct her diaphragm included a machine called the ECMO, which would circulate her blood outside of her body to make sure she stayed oxygenated. The problem with this procedure is that they have to remove the blood from her throat and replace it into a vein in her brain. In normal cases, children with fully developed brains have severe defects due to the procedure and end up retarded. A case like Beckett's, where she has only a sliver of brain tissue and little activity, would mean total degradation of her brain, leading to a vegetative state. She would be, more or less, braindead after the surgery. They would not perform the surgery on someone who was not technically 'alive'. That was the part we were dreading.
He said the only treatment they would give her, if any, was ventilation to keep her organs alive. She would eventually have to be removed from life support and would, in essence, have to be killed off.
Explaining the process of birth to us, we learned that children that young have no concept of struggle, pain or any other learned function. She would not struggle very hard to breathe during birth because she wouldn't know what it was, since she has no lung function. She would feel no pain and have no understanding of what was happening. If we put her on ventilation, she would learn what it was to breathe, eventually develop feeling and would suffer if we removed her from the machine.
She has no chance of survival at this point. The specialists are interested in what sort of "Dandy Walker" she has and would like to do additional testing, including an MRI on both me an the baby. The tests are simply educational though, and provide no idea or hope for a different prognosis. She is going to die - it's just up to us whether she suffers or not.
We've decided not to put her on ventilators. When she's ready to be born, we'll let it happen naturally and we'll hold her for the few short moments she's alive. We'll cradle her and tell her how much we love her, keep her warm and close to us until she's ready to go. The Drs said she wouldn't last more than ten minutes, and to be quite honest, they dont expect her to last more than two once she's out of the womb.
Hearing that she wouldn't be able to breathe (because she doesn't have the capacity), scared the hell out of me. All I kept imagining was a fish out of it's tank, flailing on the ground, gasping for breath. Dr Kayes was very patient with explaining that she won't be struggling like that and that it's most important to make sure she knows she's safe and loved with the little time she has. I couldn't breath while he was talking. I sat there heaving, chipping out these fractures of words I couldn't completely form, trying to make some intelligible question come out of my mouth. In a moment of stark reality, he said, "It sucks, and I'm so sorry."
He sat with us a long time, reiterating what could and could not be done. There's no medical procedure that can help her in any way. Any sort of treatment would prolong her struggle and end up injuring her and putting her in pain. I wasn't going to see my baby suffer anymore.
We'll be delivering here in town, where they have no capacity to assist her. She'll be birthed, placed directly in my arms and will stay there until we hand her over to have her body prepared. Phillip expressed his worry about being able to handle holding her, and I told him he wouldn't have to. I doubt I'll be able to let her go once I have her. She'll only be with us for a short span of time, but that will be the most important time we've ever spent with anyone.
Now comes the finalization of plans. We've discussed open or closed caskets - Phil prefers closed so that whomever is at the funeral will not gawk or be disturbed by the massive malformation of her face.m (the following link shows a rather gruesome explanation of what a cleft lip is. Beckett's is bilateral, meaning both sides. Don't click if you're easily disturbed. I'm seriously warning you, but for those of you who are curious, click here ) I prefer open - I want to see her before she's taken from me for a final time. I want to cling to what she looks like, because I know once she's in the ground, I'll start to forget. We've decided to bury her with the blanket that Auntie Cindy made for her. We have the cakset picked, the flowers picked.. we still need a location and a way to pay for everything.
I'm very cynical right now and I'm not handling things the way I should be. When my mother told me that someone said to her, "She'll be an angel in heaven", I didn't want to hear it. I really don't want to listen about how wonderful heaven is going to be for her. She's going to be a great help to someone right here on earth. Her only really viable organs are her kidneys, so we will most likely be donating them to Shands, in Gainesville. There are many children waiting for organs, who's lives depend on receiving them, and Beckett can help. She's coming to make sure that some other baby, who's just a little bit healthier than she, has a fighting chance at life. Some family is going to have years of memories and holidays with their child because of her. That's her purpose. That's all I need to know.
She has been an important, life changing catalyst in all of our lives. We will always have three children and we won't let anyone forget.
If there are further appointments, I'll update you.
The second ultrasound was performed by Dr Richards himself. With him was a team consisting of a medical student and a resident who had been researching Beckett's strange case. The long hours were filled with medical jargon and terminology that we couldn't understand. They measured in depth the size of each of her organs, her brains, certain veins, ventricles and other various tidbits that we couldn't keep track of. There were two separate types of ultrasounds, and 'invasive' does not begin to describe the sort of procedures they were.
He sat down with us after speaking with his team and calmly made a list. One side of the list said "Things we like". It contained "Fingers", "Toes", "Kidneys"... not much else. The second side of the list said "Things we don't like." It filled the paper. He told us that she had Hydrocephalus, which is water on the brain. He also said that she was no normal case though, and that her brain was almost entirely fluid. The brain tissue was minimal - no more than a sliver against one wall. The diagrams he drew were pitiful. He said it meant she had a syndrome called "Dandy Walker". Her brain would not sustain much activity.
Her Diaphgragmatic hernia was not normal either, he explained. Her bowels, stomach, gall bladder and part of her liver were pushed into her chest, leaving one lung tiny and malformed with the other not even present. Her heart has a small malformation somewhere in the septem, but it wasn't anything life threatening. He then sent us on our way and we had to wait several hours before our second appointment with the pediatric surgeon.
We spent the time visiting the museum of natural history there on the campus of UF. We also strolled through the museum of art, had lunch at the cafe and cried over our meals. It was a beautiful setting. Butterflies floated all around, lizards sprang back and forth and large koi ponds were raised in geometric shapes to provide an artsy getaway for the college students. Everything was just too pretty and serene. I was mad at it for looking so normal. I was literally angry that the world was continuing to be just as great and stimulating while my baby was continuing her malformed struggle into creation. She was not pristine or perfect and how dare anything be sunny or gorgeous on a day like that.
When we entered the children's ward for our appointment, it hit us. There were sick children everywhere. Boys in wheelchairs, bald from their battles with cancer. Little girls with MS, laid back in strollers and drooling at their absent-minded mothers. The one that really got to Phil was a little boy I hadn't seen - an obviously mentally handicapped child in a wheelchair with one of his legs turned backward. Phil was actually fine with the sight until the boy started to cry, a pathetic little sound of desperation, and he could no longer take it. We were both miserable messes, crying and wiping futilly at tears we couldn't make go away.
The nurses finally took us back and started my vitals. The first asked quietly how I was doing and they passed my paperwork back and forth. They were all staring at me sadly and I knew that was a bad sign. These women deal with sick, terminally ill children every day, and they were taking pity on me. I held my breath. They moved us into a private room to wait for Dr Kayes and on the ceiling were hand-painted tiles from children who had stayed at the facility. One finger-drawn piece said "It may be hard, it may be rough, but you can do it! I know you can!" I lost it. I bawled and shrunk and clutched myself so tightly I thought I would suffocate. We were left alone for a long time in that room and I managed to straighten up enough to be polite when Dr Kayes finally came in.
He was friendly and looked us straight in the eye. He didn't start with anything medical. He asked us how long we had been married, what our other children were named and what they were like. He said he liked to get to know all of his families and he cared very much for each case he worked with. He referred to Beckett as "your little girl" and skirted around the issue of her brain for nearly a half hour. We talked about her lip and the plastic surgeries that would ensue We discussed the severity of her hernia and the size of her lungs. He has about thirty cases a year of Diaphragmatic Hernias, and in his experience, babies with lungs smaller than a .9 don't survive any kind of surgery. Beckett's lungs are a .6 but we still hadn't lost hope.
The details about the surgery to correct her diaphragm included a machine called the ECMO, which would circulate her blood outside of her body to make sure she stayed oxygenated. The problem with this procedure is that they have to remove the blood from her throat and replace it into a vein in her brain. In normal cases, children with fully developed brains have severe defects due to the procedure and end up retarded. A case like Beckett's, where she has only a sliver of brain tissue and little activity, would mean total degradation of her brain, leading to a vegetative state. She would be, more or less, braindead after the surgery. They would not perform the surgery on someone who was not technically 'alive'. That was the part we were dreading.
He said the only treatment they would give her, if any, was ventilation to keep her organs alive. She would eventually have to be removed from life support and would, in essence, have to be killed off.
Explaining the process of birth to us, we learned that children that young have no concept of struggle, pain or any other learned function. She would not struggle very hard to breathe during birth because she wouldn't know what it was, since she has no lung function. She would feel no pain and have no understanding of what was happening. If we put her on ventilation, she would learn what it was to breathe, eventually develop feeling and would suffer if we removed her from the machine.
She has no chance of survival at this point. The specialists are interested in what sort of "Dandy Walker" she has and would like to do additional testing, including an MRI on both me an the baby. The tests are simply educational though, and provide no idea or hope for a different prognosis. She is going to die - it's just up to us whether she suffers or not.
We've decided not to put her on ventilators. When she's ready to be born, we'll let it happen naturally and we'll hold her for the few short moments she's alive. We'll cradle her and tell her how much we love her, keep her warm and close to us until she's ready to go. The Drs said she wouldn't last more than ten minutes, and to be quite honest, they dont expect her to last more than two once she's out of the womb.
Hearing that she wouldn't be able to breathe (because she doesn't have the capacity), scared the hell out of me. All I kept imagining was a fish out of it's tank, flailing on the ground, gasping for breath. Dr Kayes was very patient with explaining that she won't be struggling like that and that it's most important to make sure she knows she's safe and loved with the little time she has. I couldn't breath while he was talking. I sat there heaving, chipping out these fractures of words I couldn't completely form, trying to make some intelligible question come out of my mouth. In a moment of stark reality, he said, "It sucks, and I'm so sorry."
He sat with us a long time, reiterating what could and could not be done. There's no medical procedure that can help her in any way. Any sort of treatment would prolong her struggle and end up injuring her and putting her in pain. I wasn't going to see my baby suffer anymore.
We'll be delivering here in town, where they have no capacity to assist her. She'll be birthed, placed directly in my arms and will stay there until we hand her over to have her body prepared. Phillip expressed his worry about being able to handle holding her, and I told him he wouldn't have to. I doubt I'll be able to let her go once I have her. She'll only be with us for a short span of time, but that will be the most important time we've ever spent with anyone.
Now comes the finalization of plans. We've discussed open or closed caskets - Phil prefers closed so that whomever is at the funeral will not gawk or be disturbed by the massive malformation of her face.m (the following link shows a rather gruesome explanation of what a cleft lip is. Beckett's is bilateral, meaning both sides. Don't click if you're easily disturbed. I'm seriously warning you, but for those of you who are curious, click here ) I prefer open - I want to see her before she's taken from me for a final time. I want to cling to what she looks like, because I know once she's in the ground, I'll start to forget. We've decided to bury her with the blanket that Auntie Cindy made for her. We have the cakset picked, the flowers picked.. we still need a location and a way to pay for everything.
I'm very cynical right now and I'm not handling things the way I should be. When my mother told me that someone said to her, "She'll be an angel in heaven", I didn't want to hear it. I really don't want to listen about how wonderful heaven is going to be for her. She's going to be a great help to someone right here on earth. Her only really viable organs are her kidneys, so we will most likely be donating them to Shands, in Gainesville. There are many children waiting for organs, who's lives depend on receiving them, and Beckett can help. She's coming to make sure that some other baby, who's just a little bit healthier than she, has a fighting chance at life. Some family is going to have years of memories and holidays with their child because of her. That's her purpose. That's all I need to know.
She has been an important, life changing catalyst in all of our lives. We will always have three children and we won't let anyone forget.
If there are further appointments, I'll update you.
Friday, October 2, 2009
No News is Good News
The visit with Breland took longer than we expected. He had an emergency C-Section to attend to, so we were shuffled in and out through a two hour procedure just to see him. It took him a minute or so to even find Beckett's heartbeat and that scared me so badly, I literally felt pins in my skin as my adrenaline surged. When he found the little sound, it was distant but very fast. She's still alive and her eager heart is thumping just as hard as it can.
We went over the schedule for the next few weeks. Visits here, doctors there and another trip to his office in two weeks time. Nothing has changed so far, and that's great news.
The other night, I took some time to do some more research into Beckett's medical issues. She has so much working against her right now - it just doesn't seem fair. If she survives the brain defects, she still has to deal with the hernia. If she survives with the hernia and we're able to get her into surgery, she'll have to survive that whole ordeal. If she survives surgery, she'll have to go through more surgery for her face and will have to avoid fatal illnesses from those complications. If she makes it through everything, the simple act of eating could cause choking, pneumonia or even death. It's all terrifying. It's hard to imagine that she can overcome all of these obstacles. How many people have to go through half of what she's dealing with right now? How many people survive? I remind myself that it could all be worse - but there's really only two ways it COULD be worse. She could have Trisomy, but she doesn't. She could have passed by now, but she hasn't. There is still the threat of clubbed feet and hands, deafness, blindness, retardation, organ failure and the big one, death.
It sounds crazy, but when we thought she had Trisomy, it was easier to think of her funeral. It was a certain thing - she would pass and we would have to move on immediately, so we needed to prepare and just be tough. But now that there's this slim chance of survival, it makes everything so much harder. The hope builds every day that I feel her move and each time we hear her heartbeat, I think that maybe the doctors are wrong and she's going to be just fine. I'm scared that I'm setting myself up for a huge defeat. When we thought she was fatally ill with Trisomy, I thickened my skin and made arrangements. Now she's got a shot, and I'm scared as hell. I'm so desperate for her to make it through all this that I'm not sure what will happen if she doesn't. It was just easier to detach and be systematic about it all. She just keeps urging onward and I'm her biggest cheerleader - quietly celebrating each time she kicks and laughing when she slides around in my belly. I'm a giant, terrible mess when it comes to my children being in danger. I can't do anything but cry and shut down when Seph or Mina are hurt so I don't imagine I'll be anymore help to poor Beckett when her time comes.
I'm tired - don't sleep well. I'm nervous about the upcoming appointments and tend to get a little manic when we have to sit in waiting rooms. My heart is racing at just the thought of meeting these specialists in Gainesville. These men and women will know more about my child's situation and medical needs than I have ever learned about history, mathetmatics and art combined. They have studied longer about these rare instances than the span of my short life and it makes me feel small and insignificant. I have real, worrysome questions I need to ask but they all seem so dumb when I think of what these people deal with on a daily basis. I'm afraid if I ask things like "Can you give her a lung?" or "Can you give her something for her pain?", I'll get laughed at or scoffed at. I'm clueless about my own daughter's needs because the majority of the world's population has never had to deal with these sort of circumstances. Dr Dobak was genuinely compassionate and took his time with explaining things, so logically I'm sure these new specialists will be just as kind. But they're surgeons, internists, neonatal giants in their fields. I don't want to walk in, crying like an idiot and beg them to help her however they can. I want to know what to ask so that I get some definitive answers. I don't want to be the dumb mom that they just pat on the head and work around to get the job done. It's all.... stressful and depressing.
My mood bounces back and forth about all of this. Beckett, my expectations for her, the specifics of her medical difficulties, my other children, my family angle... It's hard to stay level-headed when there is so much to think about.
I'm exhausted. If I don't update before Tuesday, I'll surely do it Wednesday when we get back from Gainesville. Thank you to everyone who's subscribed to this blog or is following it on their own. It's good to know that people are reading and care for all of us.
We went over the schedule for the next few weeks. Visits here, doctors there and another trip to his office in two weeks time. Nothing has changed so far, and that's great news.
The other night, I took some time to do some more research into Beckett's medical issues. She has so much working against her right now - it just doesn't seem fair. If she survives the brain defects, she still has to deal with the hernia. If she survives with the hernia and we're able to get her into surgery, she'll have to survive that whole ordeal. If she survives surgery, she'll have to go through more surgery for her face and will have to avoid fatal illnesses from those complications. If she makes it through everything, the simple act of eating could cause choking, pneumonia or even death. It's all terrifying. It's hard to imagine that she can overcome all of these obstacles. How many people have to go through half of what she's dealing with right now? How many people survive? I remind myself that it could all be worse - but there's really only two ways it COULD be worse. She could have Trisomy, but she doesn't. She could have passed by now, but she hasn't. There is still the threat of clubbed feet and hands, deafness, blindness, retardation, organ failure and the big one, death.
It sounds crazy, but when we thought she had Trisomy, it was easier to think of her funeral. It was a certain thing - she would pass and we would have to move on immediately, so we needed to prepare and just be tough. But now that there's this slim chance of survival, it makes everything so much harder. The hope builds every day that I feel her move and each time we hear her heartbeat, I think that maybe the doctors are wrong and she's going to be just fine. I'm scared that I'm setting myself up for a huge defeat. When we thought she was fatally ill with Trisomy, I thickened my skin and made arrangements. Now she's got a shot, and I'm scared as hell. I'm so desperate for her to make it through all this that I'm not sure what will happen if she doesn't. It was just easier to detach and be systematic about it all. She just keeps urging onward and I'm her biggest cheerleader - quietly celebrating each time she kicks and laughing when she slides around in my belly. I'm a giant, terrible mess when it comes to my children being in danger. I can't do anything but cry and shut down when Seph or Mina are hurt so I don't imagine I'll be anymore help to poor Beckett when her time comes.
I'm tired - don't sleep well. I'm nervous about the upcoming appointments and tend to get a little manic when we have to sit in waiting rooms. My heart is racing at just the thought of meeting these specialists in Gainesville. These men and women will know more about my child's situation and medical needs than I have ever learned about history, mathetmatics and art combined. They have studied longer about these rare instances than the span of my short life and it makes me feel small and insignificant. I have real, worrysome questions I need to ask but they all seem so dumb when I think of what these people deal with on a daily basis. I'm afraid if I ask things like "Can you give her a lung?" or "Can you give her something for her pain?", I'll get laughed at or scoffed at. I'm clueless about my own daughter's needs because the majority of the world's population has never had to deal with these sort of circumstances. Dr Dobak was genuinely compassionate and took his time with explaining things, so logically I'm sure these new specialists will be just as kind. But they're surgeons, internists, neonatal giants in their fields. I don't want to walk in, crying like an idiot and beg them to help her however they can. I want to know what to ask so that I get some definitive answers. I don't want to be the dumb mom that they just pat on the head and work around to get the job done. It's all.... stressful and depressing.
My mood bounces back and forth about all of this. Beckett, my expectations for her, the specifics of her medical difficulties, my other children, my family angle... It's hard to stay level-headed when there is so much to think about.
I'm exhausted. If I don't update before Tuesday, I'll surely do it Wednesday when we get back from Gainesville. Thank you to everyone who's subscribed to this blog or is following it on their own. It's good to know that people are reading and care for all of us.
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