We've had a lot of support from our family these past few weeks and we're not surprised at how our extended relatives have rallied behind us. We can always count on blood to raise their fists the highest and shout the loudest when it comes to our causes.
I wanted to take a moment to thank my mother's side of the family for celebrating Beckett in every way possible and also for supporting us in what they know is a difficult time in our lives. My mother's sisters, in particular, have been the most vocal in reminding us that we're not alone through this struggle. It's hard sometimes to remember that Beckett's story travels to all four corners of the world and these fantastic ladies remind us that we have an army in our corner to fight and praise and celebrate and grieve when each action is appropriate.
This afternoon, we received a package from Auntie Cindy (on the far west coast) that had a special little something for each of the kids. Mina has her very first Halloween outfit, Seph has 'scary' underwear and a super cool shirt that glows and even Beckett had something. A specially crafted blanket in yellow and white, sporting a super-soft duck on the front and ultra-slick silk material on the back. It's exactly what we were looking for but we couldn't find. Thanks to Cindy and her hard work, we now have a beautiful blanket for Beckett when we were sure we'd never be able to find one! It was impossible to find anything yellow and this blanket is beyond what we were hoping for. We're currently hiding it from the other two munchkins (who LOVE silk) and plan to take it with us for Beckett's delivery. I've made my user photo a picture of the blanket. Thank you, thank you, thank you Auntie Cindy.
Appointments are coming up quickly. This Friday is the first, then on Tuesday we leave for Gainesville and Thursday is Pensacola. From the 5th to the 9th, we're going to be a hot mess with all the traveling and specialists visits. We have to drive five hours one way, then seven the other and then two back over the span of three days. It's a little scary, but these trips are absolutely necessary. Some people have suggested we stay in a hotel during our visit to Gainesville so that we won't have to travel at 2 in the morning or 10 at night, but I'm not sure it's something we CAN do or WANT to do just yet. It's a long time to be away from our babies, even though I know they'll be having a complete blast with Mimi and Poppa that whole week. I'm eager to get Beckett all the help and attention she needs, but I'm just as eager to spend as much time with Seph and Mina as possible.
More news on Friday, after we meet with Dr Breland.
Tuesday, September 29, 2009
Thursday, September 24, 2009
Appointments
The updates will come slowly from now on. Our next appointment is October 2nd, in town with Breland. After that, on the 6th we'll be in Gainesville to speak with the surgeons/delivery teams/internists... It's going to be an all day affair. It will take us five hours to get there and we have to leave at 2:30 in the morning to make our first appointment in time. The second appointment that day will be at 3 in the afternoon, so we have a whole day of nothing to do in a strange town until we can meet with the other specialists. After that, on the 8th, we have an appointment in Pensacola with Dr Dobak. It's a huge cluster of traveling and worry.
We're extremely grateful to "Mimi" and "Poppa" for cancelling their trip to visit family. If they headed west like they had planned, our children would have no one to watch them while we travel these few days in October. These appointments would've been impossible had they been on vacation, so a HUGE thank you goes out to them.
We're extremely grateful to "Mimi" and "Poppa" for cancelling their trip to visit family. If they headed west like they had planned, our children would have no one to watch them while we travel these few days in October. These appointments would've been impossible had they been on vacation, so a HUGE thank you goes out to them.
Monday, September 21, 2009
Final Amnio - More Specialists
The final results from the amniocentesis came in today. All of Beckett's chromosomes look normal and her fluids came back fine, showing that she has no spinal defect. With no abnormalities, we're not really sure what is causing the fluid/spotting in her brain OR the diaphragmatic hernia. Just some random skew in her creation that gave her these issues is the best we can come up with for now.
Our next appointment is with Breland on October 2nd. That will be to check her heart, maybe do another ultrasound and talk more about what his role will be in the progression of the pregnancy. October 8th is our next appointment at Sacred Heart in Pensacola and we expect Dr Dobak to do another ultrasound to check the growth of her organs. We spoke with his office today and had a long talk about what we could expect in the next few weeks. The ultrasound still looks abnormal and he has real concerns about Beckett, but can't pinpoint where her troubles are coming from. We can do nothing about her brain for now but her capacities will be checked after birth, hoping she makes it that far. We have an appointment with the pediatric heart surgeons in Gainesville to discuss what can be done for her concerning her diaphragm, lungs, stomach, heart and intestines. There, they have a special machine that can circulate her blood outside of her body to keep her oxygenated. They also have the ability to inflate her lungs for her, help them to grow and even provide us with a lung transplant, given there is a suitable donor found. This is all something we've taken in stride because we have to keep in mind that she could pass at any moment. Her body may just shut down because of the issues she's faced with and we might not make it to her due date.
We'll be setting an induction date based on the rate of her growth. They don't want to let me go into natural labor because there are no doctors in town that can help with her case. We will have to be in Gainesville (or st. petersburg) to give her a fighting chance. After meeting with the heart surgeons, we'll meet with a delivery team to sort out the details. Usually, meeting with the two teams takes two separate trips, but because we live nearly five hours away from the facility, they're jam-packing it into a one day trip. Heart surgeons, specialists, neonatal nurses... I'm taking my voice recorder and notebook so I don't miss a word. I'm nervous, excited, and just a little bit hopeful.
We allowed ourselves to go shopping for baby blankets today, looking for something sweet and yellow. We couldn't find anything in that colour, but it was nice to daydream about swaddling Beckett in anything at all. Our son now refers to her by name and tells everyone about her, even strangers he meets in stores. "The baby in Mommy's tummy is named Beckett," and then he goes on to say everyone else's names in our family. It's really adorable. It makes it real when one child is excited about another child. We're lucky to have kids that are happy to have siblings.
Our next appointment is with Breland on October 2nd. That will be to check her heart, maybe do another ultrasound and talk more about what his role will be in the progression of the pregnancy. October 8th is our next appointment at Sacred Heart in Pensacola and we expect Dr Dobak to do another ultrasound to check the growth of her organs. We spoke with his office today and had a long talk about what we could expect in the next few weeks. The ultrasound still looks abnormal and he has real concerns about Beckett, but can't pinpoint where her troubles are coming from. We can do nothing about her brain for now but her capacities will be checked after birth, hoping she makes it that far. We have an appointment with the pediatric heart surgeons in Gainesville to discuss what can be done for her concerning her diaphragm, lungs, stomach, heart and intestines. There, they have a special machine that can circulate her blood outside of her body to keep her oxygenated. They also have the ability to inflate her lungs for her, help them to grow and even provide us with a lung transplant, given there is a suitable donor found. This is all something we've taken in stride because we have to keep in mind that she could pass at any moment. Her body may just shut down because of the issues she's faced with and we might not make it to her due date.
We'll be setting an induction date based on the rate of her growth. They don't want to let me go into natural labor because there are no doctors in town that can help with her case. We will have to be in Gainesville (or st. petersburg) to give her a fighting chance. After meeting with the heart surgeons, we'll meet with a delivery team to sort out the details. Usually, meeting with the two teams takes two separate trips, but because we live nearly five hours away from the facility, they're jam-packing it into a one day trip. Heart surgeons, specialists, neonatal nurses... I'm taking my voice recorder and notebook so I don't miss a word. I'm nervous, excited, and just a little bit hopeful.
We allowed ourselves to go shopping for baby blankets today, looking for something sweet and yellow. We couldn't find anything in that colour, but it was nice to daydream about swaddling Beckett in anything at all. Our son now refers to her by name and tells everyone about her, even strangers he meets in stores. "The baby in Mommy's tummy is named Beckett," and then he goes on to say everyone else's names in our family. It's really adorable. It makes it real when one child is excited about another child. We're lucky to have kids that are happy to have siblings.
Thursday, September 17, 2009
Not Many Answers
Another appointment with Dr Breland and we're still waiting to see what will happen with Beckett. He asked us (as he does during each visit) if we were considering aborting her and without hesitation, we said no. It's the same each time. We never have to think about it. Just no.
His explanations were less optimistic than they were medical. He said Beckett doesn't have much lung tissue to speak of. The question we had about steroids maybe making a difference in her growth was shot down. Steroids will only enhance what tissue is there. It won't help her to -form- lungs, only to strengthen them, and what we gathered was that she isn't expected to even grow them.
He gave us instructions on what to do if I went into labor. He hypothesized that labor could start as early as two weeks from now. At that stage, a normal fetus would have an 80% chance of surviving outside of the womb. Beckett, however, has no chance at this stage in her development. We still don't know if her chances will improve, but we have another appointment in two weeks to check on her. Our follow up with Dr Dobak has yet to be scheduled. It's a long, arduous process and I'm a little out of breath from just thinking about it.
Breland says we will most likely be delivering her at St. Petersburg, nearly 8 hours away from where we live. It's the most capable facility for our situation. We're now faced with the sorts of questions that should never be asked of parents. If her brain functions, but she has no lungs, will we keep her on life support or just acquire comfort measures for the few moments she has? Will we even bother with life support if there is no lung tissue? Will we consider (if her brain improves in the next few weeks) surgery to correct her heart and diaphragm while she is still in the womb? The last question is... strange.... the process to operate on her while she's still inside me is a shakey, experimental one which happens to be very painful to both mother and baby. These are all questions we can't answer until we're faced with their respective burning bridges. We need more information. More tests are needed to ascertain what condition her organs are in and at only 5 months gestation, we're not sure we'll get the answers we need.
Beyond all the medical business, there are other equally painful ideas to sort through. When I think of Beckett, I imeediately think of her lip and what others will think of when they see her. Even the idea of an open casket is painful, not because I'm afraid of looking at her, but because I'm afraid of what others will feel. I have two beautiful, flawless children who don't have so much as a scar, much less a gaping hole for a top jaw. It's beyond reason that on top of the life-threatening issues she faces, she also has to harbour this monstrous sign of struggle and deformation. I want to take pictures of her whether she's alive or not and be able to show them off with pride! This is my baby girl and she fought harder in her short time than any of us ever have! I know no one will say a thing because everyone involved is family, extended-family and friends. I want people to look at her, unafraid, and understand how important she is. She is so much more than a statistical anomaly. She's an idea, a belief, a hope and a planned part of our family. Not a day goes by that someone doesn't stop me and say I have the most beautiful children - I don't want Beckett to be any different.
We're doing everything in our power to help her. We're seeing the best doctors, planning everything down to the tiniest detail for her benefit and working to make sure she is remembered in the best possible light if and when she passes. We still have her for now and every move she makes is a great comfort to me.
We expect more amnio results at the beginning of next week.
His explanations were less optimistic than they were medical. He said Beckett doesn't have much lung tissue to speak of. The question we had about steroids maybe making a difference in her growth was shot down. Steroids will only enhance what tissue is there. It won't help her to -form- lungs, only to strengthen them, and what we gathered was that she isn't expected to even grow them.
He gave us instructions on what to do if I went into labor. He hypothesized that labor could start as early as two weeks from now. At that stage, a normal fetus would have an 80% chance of surviving outside of the womb. Beckett, however, has no chance at this stage in her development. We still don't know if her chances will improve, but we have another appointment in two weeks to check on her. Our follow up with Dr Dobak has yet to be scheduled. It's a long, arduous process and I'm a little out of breath from just thinking about it.
Breland says we will most likely be delivering her at St. Petersburg, nearly 8 hours away from where we live. It's the most capable facility for our situation. We're now faced with the sorts of questions that should never be asked of parents. If her brain functions, but she has no lungs, will we keep her on life support or just acquire comfort measures for the few moments she has? Will we even bother with life support if there is no lung tissue? Will we consider (if her brain improves in the next few weeks) surgery to correct her heart and diaphragm while she is still in the womb? The last question is... strange.... the process to operate on her while she's still inside me is a shakey, experimental one which happens to be very painful to both mother and baby. These are all questions we can't answer until we're faced with their respective burning bridges. We need more information. More tests are needed to ascertain what condition her organs are in and at only 5 months gestation, we're not sure we'll get the answers we need.
Beyond all the medical business, there are other equally painful ideas to sort through. When I think of Beckett, I imeediately think of her lip and what others will think of when they see her. Even the idea of an open casket is painful, not because I'm afraid of looking at her, but because I'm afraid of what others will feel. I have two beautiful, flawless children who don't have so much as a scar, much less a gaping hole for a top jaw. It's beyond reason that on top of the life-threatening issues she faces, she also has to harbour this monstrous sign of struggle and deformation. I want to take pictures of her whether she's alive or not and be able to show them off with pride! This is my baby girl and she fought harder in her short time than any of us ever have! I know no one will say a thing because everyone involved is family, extended-family and friends. I want people to look at her, unafraid, and understand how important she is. She is so much more than a statistical anomaly. She's an idea, a belief, a hope and a planned part of our family. Not a day goes by that someone doesn't stop me and say I have the most beautiful children - I don't want Beckett to be any different.
We're doing everything in our power to help her. We're seeing the best doctors, planning everything down to the tiniest detail for her benefit and working to make sure she is remembered in the best possible light if and when she passes. We still have her for now and every move she makes is a great comfort to me.
We expect more amnio results at the beginning of next week.
Monday, September 14, 2009
The Amnio Preliminary Results
Sacred Heart contacted us today (after a weekend of worry) and let us know of the amniocentesis findings. The chromosomes responsible for Trisomy 13 & 18 (both fatal) and Trisomy 21 (otherwise known as Down Syndrome) look normal in their current state. This is tenative, hopeful news. There are still other chromosomes to test but so far the idea that whatever condition her brain is in is safe enough to sustain some form of life is an exciting change of pace. We've been so worried that she wouldn't have the capacity to survive outside of the womb because of these certain chromosomes we had never heard of. As of today, we're optimistic and don't believe her brain will be the cause of her demise. No Trisomy 13. No Trisomy 18. No Downs.
The cleft lip is still a factor. Dr Dobak worried that it was caused by a chromosomal defect, but has so far found nothing of the sort. We still have a week or so to wait and see what the other chromosomes show.
The last hurdle she has is her heart/lungs. Because of the diaphragmatic hernia, her heart is putting considerable strain on her lungs and there is still fear that her organs wont develop fully because of this. Now that the idea of Trisomy is out, we expect her to undergo heart/lung surgery shortly after birth (granted, she makes it). There is still the constant threat of passing in the womb and I'm excited every day that I feel her move. Moving limbs means her heart is still pumping and it's all I have to hang on to right now.
I have already picked a casket, a funeral home and have begun designating a charity for donations during the services. With everything in place, I think I'll stop focusing on what needs to be done in the case of her passing and start to revel in the semi-good news we've received. She's still in more danger than any baby should ever be, but now at least we're skeptical of her death.
On a different note, I've had a lot of questions about her name, so I'll explain here. Beckett, her first name, isn't the most feminine, but its a strong, distinct name that I'll never forget. Etalei is an original name and is pronounced Et (get, sans the 'g') - uh - lay. Et-uh-lay. Etalei.
Our next appointment is with Breland and is only three days away. I have more questions for him concerning the growth of her organs and how we can help. I remember giving Sephire steroids in the womb to assist his lungs, but I'm not sure that's applicable in Beckett's case. I'll update you then. Thank you for your letters and comments.
The cleft lip is still a factor. Dr Dobak worried that it was caused by a chromosomal defect, but has so far found nothing of the sort. We still have a week or so to wait and see what the other chromosomes show.
The last hurdle she has is her heart/lungs. Because of the diaphragmatic hernia, her heart is putting considerable strain on her lungs and there is still fear that her organs wont develop fully because of this. Now that the idea of Trisomy is out, we expect her to undergo heart/lung surgery shortly after birth (granted, she makes it). There is still the constant threat of passing in the womb and I'm excited every day that I feel her move. Moving limbs means her heart is still pumping and it's all I have to hang on to right now.
I have already picked a casket, a funeral home and have begun designating a charity for donations during the services. With everything in place, I think I'll stop focusing on what needs to be done in the case of her passing and start to revel in the semi-good news we've received. She's still in more danger than any baby should ever be, but now at least we're skeptical of her death.
On a different note, I've had a lot of questions about her name, so I'll explain here. Beckett, her first name, isn't the most feminine, but its a strong, distinct name that I'll never forget. Etalei is an original name and is pronounced Et (get, sans the 'g') - uh - lay. Et-uh-lay. Etalei.
Our next appointment is with Breland and is only three days away. I have more questions for him concerning the growth of her organs and how we can help. I remember giving Sephire steroids in the womb to assist his lungs, but I'm not sure that's applicable in Beckett's case. I'll update you then. Thank you for your letters and comments.
Friday, September 11, 2009
Introductions
September 9th was my fifth wedding anniversary - a day my husband and I had dedicated to finally spending one full, celebratory occasion together. With a slight hitch in our plans, we had to attend an ultrasound of our unborn baby to determine it's gender and measurements. It wasn't an unhappy addition to the day and we were making bets on whether the baby would turn out to be a boy or a girl. I won. We are having a girl.
The ultrasound had gone on for more than half an hour, much longer than I expected. The good news was suddenly dwarfed when our technician said something along the lines of some findings looking "concerning". Something about the brain.. the heart... the lip. She quickly ushered us into a private room and there we waited in fear for our doctor, Dr. Breland.
I cried. My husband, Phillip, sat quietly, handing me tissues. Breland finally arrived and told us that our unborn girl had enlarged ventricles in her brain. Her lip seemed to be cleft and her heart had begun growing on the wrong side of her chest. He wasn't sure what all of the symptoms meant but he was concerned enough to contact the Sacred Heart Health System in Pensacola and schedule a next day appointment with a perinatal specialist. He assured us that Sacred Heart would conduct the appropriate testing on the fetus and let us know what to expect concerning her health. It was frightening to know that a perinatal specialist was willing to see us so quickly, especially considering the fact that appointments with doctors of that caliber are nearly impossible to get and usually involve a wait of weeks or months.
We left confused, but hopeful. We stayed hopeful through the drive to Pensacola. We were hopeful (and tired) through the initial ultrasound and even chatted casually with our technician, discussing baby names and birth control. By this point, being only slightly fearful of what waited in our daughter's future, we named her Beckett Etalei, determined to make her as much of a real person as she could be.
The specialist, Dr. Dobak, conducted a second ultrasound and, with his hand reassuringly on my leg, let us know of the findings. Beckett's heart was indeed on the right side of her chest, though it was beating fast and strong. The left side of her chest was filled with her stomach and intestines, having seeped in through a hole in her diaphragm, known as a diaphragmatic hernia. The displacement of her organs wasn't allowing her lungs to form properly and he feared she would never learn to breathe. Her brain was as Breland feared, full of enlarged ventricles, fluid and other various holes. Dr. Dobak explained that a brain in this condition would not sustain life and was probably caused by a chromosome defect known as Trisomy. (I'll explain this condition further next week) The defect, we're told, is rare and occurs once in 25,000 babies. To top it all off, the normal formation of her face was marred by a cleft lip, which is probably the result of the same chromosome defect.
Stunned, we also learned that her chances of making it to her delivery date alive were slim. If she manages to survive until birth, Dr. Dobak does not expect her to live longer than a few hours. Some lucky families get a few days or weeks with their children if they have this particular Trisomy defect, but survival is almost entirely unheard of.
The visit included an amniocentesis. The information would be able to determine exactly which chromosome had malfunctioned in Beckett's creation and would give us more clues on how long we could expect to have our baby girl with us. The results from that test come Monday. We met with a genetic counselor who will be assisting us through the process of carrying Beckett and ushering her on to her next phase, whether that be surgery to correct her heart and other organs after delivery, or a quiet passing due to the Trisomy.
Medically, our next steps include weekly ultrasounds to make sure Beckett is still alive in utero. We'll be keeping a close eye on how she functions and grows until her estimated due date of January 20th. In all other aspects, we're trying to stay level-headed about how we should proceed. We have discussed funeral homes, burial plots and what colours her funeral dress and flowers should be.
There is very little hope so far, but we haven't extinguished the thought of Beckett surviving. With more information available only after Monday, we can't do much but wait.
The ultrasound had gone on for more than half an hour, much longer than I expected. The good news was suddenly dwarfed when our technician said something along the lines of some findings looking "concerning". Something about the brain.. the heart... the lip. She quickly ushered us into a private room and there we waited in fear for our doctor, Dr. Breland.
I cried. My husband, Phillip, sat quietly, handing me tissues. Breland finally arrived and told us that our unborn girl had enlarged ventricles in her brain. Her lip seemed to be cleft and her heart had begun growing on the wrong side of her chest. He wasn't sure what all of the symptoms meant but he was concerned enough to contact the Sacred Heart Health System in Pensacola and schedule a next day appointment with a perinatal specialist. He assured us that Sacred Heart would conduct the appropriate testing on the fetus and let us know what to expect concerning her health. It was frightening to know that a perinatal specialist was willing to see us so quickly, especially considering the fact that appointments with doctors of that caliber are nearly impossible to get and usually involve a wait of weeks or months.
We left confused, but hopeful. We stayed hopeful through the drive to Pensacola. We were hopeful (and tired) through the initial ultrasound and even chatted casually with our technician, discussing baby names and birth control. By this point, being only slightly fearful of what waited in our daughter's future, we named her Beckett Etalei, determined to make her as much of a real person as she could be.
The specialist, Dr. Dobak, conducted a second ultrasound and, with his hand reassuringly on my leg, let us know of the findings. Beckett's heart was indeed on the right side of her chest, though it was beating fast and strong. The left side of her chest was filled with her stomach and intestines, having seeped in through a hole in her diaphragm, known as a diaphragmatic hernia. The displacement of her organs wasn't allowing her lungs to form properly and he feared she would never learn to breathe. Her brain was as Breland feared, full of enlarged ventricles, fluid and other various holes. Dr. Dobak explained that a brain in this condition would not sustain life and was probably caused by a chromosome defect known as Trisomy. (I'll explain this condition further next week) The defect, we're told, is rare and occurs once in 25,000 babies. To top it all off, the normal formation of her face was marred by a cleft lip, which is probably the result of the same chromosome defect.
Stunned, we also learned that her chances of making it to her delivery date alive were slim. If she manages to survive until birth, Dr. Dobak does not expect her to live longer than a few hours. Some lucky families get a few days or weeks with their children if they have this particular Trisomy defect, but survival is almost entirely unheard of.
The visit included an amniocentesis. The information would be able to determine exactly which chromosome had malfunctioned in Beckett's creation and would give us more clues on how long we could expect to have our baby girl with us. The results from that test come Monday. We met with a genetic counselor who will be assisting us through the process of carrying Beckett and ushering her on to her next phase, whether that be surgery to correct her heart and other organs after delivery, or a quiet passing due to the Trisomy.
Medically, our next steps include weekly ultrasounds to make sure Beckett is still alive in utero. We'll be keeping a close eye on how she functions and grows until her estimated due date of January 20th. In all other aspects, we're trying to stay level-headed about how we should proceed. We have discussed funeral homes, burial plots and what colours her funeral dress and flowers should be.
There is very little hope so far, but we haven't extinguished the thought of Beckett surviving. With more information available only after Monday, we can't do much but wait.
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