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.
Wednesday, October 7, 2009
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.
Tuesday, September 29, 2009
Another Thank You
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.
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.
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.
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