Thought I would post a quick update since my last appointment. On Wednesday, I had a regular appointment and saw the nurse practitioner. I wasn't really thrilled about not getting to see my doctor and left the appointment quite frustrated. I have since spoken with my doctor and feel more relieved. Everything is going okay, main problem right now is swelling. My legs and feet have been swelling all week and pretty significantly. Starting yesterday, my arms and hands have started swelling as well. This has been a new challenge for me because I missed out on this joy of pregnancy when I was pregnant with Sean. It has been recommended that i follow a low sodium diet, which is a challenge for someone whose favorite foods are pickles and chips & salsa. my blood pressure was also up slightly but still in the normal range.
We appreciate every one's support and prayers more than I can explain. I will try to update more this weekend.
Friday, August 27, 2010
Wednesday, August 18, 2010
Blessings
"God, Our Father, once again, thank you for our blessings, amen"
Those are the words to the grace that Sean knows and lately they have been a wonderful, simple reminder for me. In the midst of our emotions and struggles, we have been blessed in ways I know we don't even fully understand. We have Ryan, right now, he is with us and he is ours. This journey has truly opened our eyes to the blessings in our life. We have realized what an amazing support system of family and friends we have surrounding us. It has given us the opportunity to work on and deepen those relationships. Ryan has also really helped us as a family spend more time together and realize how important our family is. Through the struggles, I have realized how amazing my husband is and how blessed I am to have him beside me through this journey.
This week marks my 25th week of pregnancy, which was a goal I set when we learned about Ryan's diagnosis. There was something about making it to this point that just solidified our decisions. It is hard to believe that it has been over 5 weeks since we received the devastating news. It is even harder for me to realize that I only have 11 weeks left, if things go as planned (which I know after everything, I probably shouldn't count on my plans). I just have it set in my head that Ryan is going to be born the first week of November. 11 weeks just doesn't seem long enough. In reality, there isn't a time frame that would be "enough" at this point.
This week has actually been a pretty good week for me, emotionally. This is a pretty big feat, especially considering that Scott had to have a day surgery procedure for kidney stones and was given IV sedation. I found it quite unnerving to have him wheeled of the room to go for the procedure and I have told him, that I don't like him being a patient. But we both survived and it seems like the procedure was a success (will know more in a few weeks) and hopefully kidney stones will be a thing of the past (pretty sure that Scott would second that!).
The rough moments this week have just been from interactions with strangers, who have no filter in regard to questions they will ask. A lot of people are fearful of even asking a woman if she is pregnant - not people around me, though I will give them a break - it is pretty obvious! I have become used to answering the basic questions - when is your due date, is this your first and boy or girl. I can answer those questions like a pro and don't mind because it is a little way of acknowledging Ryan. Today, though, I had a stranger who after asking those questions, proceeded to ask if I planned to bottle or breast feed! Seriously, does anyone else ask that of a perfect stranger. I don't even fully recall may answer, I just know that I managed to get one out. I don't think fast enough on my feet for it to even have been a good answer. There was a part of me that just wanted to look at her and say "I don't have to make that decision, because my child will likely only survive for moments at birth", but I didn't. The irritated part of me, still wishes I had said it, but I am glad I didn't, though the look on her face could have been worth it :)
My next check-up with the doctor is a week from today and I am interested to see how I measure. Physically, my body is tired. I went to sleep last night at 8:15, as soon as I got Sean to bed, and I will probably do the same thing tonight. I will post an update after my next appointment.
Those are the words to the grace that Sean knows and lately they have been a wonderful, simple reminder for me. In the midst of our emotions and struggles, we have been blessed in ways I know we don't even fully understand. We have Ryan, right now, he is with us and he is ours. This journey has truly opened our eyes to the blessings in our life. We have realized what an amazing support system of family and friends we have surrounding us. It has given us the opportunity to work on and deepen those relationships. Ryan has also really helped us as a family spend more time together and realize how important our family is. Through the struggles, I have realized how amazing my husband is and how blessed I am to have him beside me through this journey.
This week marks my 25th week of pregnancy, which was a goal I set when we learned about Ryan's diagnosis. There was something about making it to this point that just solidified our decisions. It is hard to believe that it has been over 5 weeks since we received the devastating news. It is even harder for me to realize that I only have 11 weeks left, if things go as planned (which I know after everything, I probably shouldn't count on my plans). I just have it set in my head that Ryan is going to be born the first week of November. 11 weeks just doesn't seem long enough. In reality, there isn't a time frame that would be "enough" at this point.
This week has actually been a pretty good week for me, emotionally. This is a pretty big feat, especially considering that Scott had to have a day surgery procedure for kidney stones and was given IV sedation. I found it quite unnerving to have him wheeled of the room to go for the procedure and I have told him, that I don't like him being a patient. But we both survived and it seems like the procedure was a success (will know more in a few weeks) and hopefully kidney stones will be a thing of the past (pretty sure that Scott would second that!).
The rough moments this week have just been from interactions with strangers, who have no filter in regard to questions they will ask. A lot of people are fearful of even asking a woman if she is pregnant - not people around me, though I will give them a break - it is pretty obvious! I have become used to answering the basic questions - when is your due date, is this your first and boy or girl. I can answer those questions like a pro and don't mind because it is a little way of acknowledging Ryan. Today, though, I had a stranger who after asking those questions, proceeded to ask if I planned to bottle or breast feed! Seriously, does anyone else ask that of a perfect stranger. I don't even fully recall may answer, I just know that I managed to get one out. I don't think fast enough on my feet for it to even have been a good answer. There was a part of me that just wanted to look at her and say "I don't have to make that decision, because my child will likely only survive for moments at birth", but I didn't. The irritated part of me, still wishes I had said it, but I am glad I didn't, though the look on her face could have been worth it :)
My next check-up with the doctor is a week from today and I am interested to see how I measure. Physically, my body is tired. I went to sleep last night at 8:15, as soon as I got Sean to bed, and I will probably do the same thing tonight. I will post an update after my next appointment.
Tuesday, August 10, 2010
Thoughts
I normally like to have a reason for doing a post, but today I don't, except the need to share. The last few days have been rough, I wish I had a specific reason for why, but I don't. Of course, around here we blame the heat for everything, so I will go with that. I think I have just hit a point of mental and physical exhaustion from trying to hold everything together. I wake up every morning and go to work and try to forget as much as possible about what is going on, so that I can put on a smile and listen the patient's complaints and concerns. There are moments that I have that innate human desire to "one up" their problems, but no concerns, I have held my tongue.
I find that I don't talk about Ryan much except at home, mainly because then my cover-up would be done. That and I know that it is a depressing topic for most people and it often leaves people without anything to say when then just becomes uncomfortable. Most days I still tell Ryan's story to atleast one person that does not know, but yesterday, it felt like it was all day. Most of the time it just starts with someone asking about the pregnancy and if we know if we are having a boy or girl, and just goes from there. Now, if it is a store clerk, complete stranger, or patient/family, I don't share the story. I do have some restraints. But if it is someone I work with and know, I tell Ryan's story. As a mom, I want my son to be known and to exist to people. Today though, I didn't even have the energy to tell his story.
I wish at some point in my life I had learned how to turn my thoughts off, because I really am not good at it. Most of the time, I can't even bring myself to share the thoughts. Every morning I wake up with the knowledge that my son is most likely going to die before he has the chance to live. It is at that time, that I start my bargaining and begging with God. I don't often tell people about this, but I beg and plead that my child will be born healthy. I get angry and tell God that I want my child at home with me. That he NEEDS to be with his mommy and daddy and big brother who love him so much. I want with every fiber of my being to bring my child home. I don't want to share him, heaven doesn't need him right now, we need him. I tell most people that we are only praying for the miracle of having some moments with Ryan and in my rationale moments, that is truly what I hope for. I understand the diagnosis and the medical aspect of everything but I hate it. I don't want to hear that I can have more children, I want this child! I want someone to explain to me why, why we are having to hurt more than I could ever explain, why I have to explain to my three year old son that the little brother he already loves will not get to play with him in the backyard, why with everything else I can't even be granted the feelings of my baby kicking and moving. I keep hoping that if I type these thoughts, maybe my mind will quiet down for a little while, but I know that the ache will still be there.
I need some peace.
I find that I don't talk about Ryan much except at home, mainly because then my cover-up would be done. That and I know that it is a depressing topic for most people and it often leaves people without anything to say when then just becomes uncomfortable. Most days I still tell Ryan's story to atleast one person that does not know, but yesterday, it felt like it was all day. Most of the time it just starts with someone asking about the pregnancy and if we know if we are having a boy or girl, and just goes from there. Now, if it is a store clerk, complete stranger, or patient/family, I don't share the story. I do have some restraints. But if it is someone I work with and know, I tell Ryan's story. As a mom, I want my son to be known and to exist to people. Today though, I didn't even have the energy to tell his story.
I wish at some point in my life I had learned how to turn my thoughts off, because I really am not good at it. Most of the time, I can't even bring myself to share the thoughts. Every morning I wake up with the knowledge that my son is most likely going to die before he has the chance to live. It is at that time, that I start my bargaining and begging with God. I don't often tell people about this, but I beg and plead that my child will be born healthy. I get angry and tell God that I want my child at home with me. That he NEEDS to be with his mommy and daddy and big brother who love him so much. I want with every fiber of my being to bring my child home. I don't want to share him, heaven doesn't need him right now, we need him. I tell most people that we are only praying for the miracle of having some moments with Ryan and in my rationale moments, that is truly what I hope for. I understand the diagnosis and the medical aspect of everything but I hate it. I don't want to hear that I can have more children, I want this child! I want someone to explain to me why, why we are having to hurt more than I could ever explain, why I have to explain to my three year old son that the little brother he already loves will not get to play with him in the backyard, why with everything else I can't even be granted the feelings of my baby kicking and moving. I keep hoping that if I type these thoughts, maybe my mind will quiet down for a little while, but I know that the ache will still be there.
I need some peace.
Tuesday, August 3, 2010
Enough
I know I have often said that I have had enough, whether in relation to work, things at home, or three year old tantrums, but our current experience has redefined "enough". I would describe myself as living most days at my breaking point, just barely pulling it together to make it through the day. Now please don't think that our house is all gloom and doom (that would be pretty tough living with my crazy child), but I would say that most days all it would take is a few words, a story, a song, almost anything to make me feel like I am not capable of keeping it together. We still work hard to have good days and this weekend we got to spend time at Scott's brother's home swimming and have quality family time. The rest of the weekend was when I wanted to scream that I had enough.
Early Sunday morning, Scott woke up in incredible pain, so we made a family trip to the ED. Scott ended up with kidney stones, which the experience I am pretty sure is something he never wants to experience again. Scott spent most of the day sleeping off all of the medications, hoping that the stones had all passed and the experience was over. Unfortunately, when he was working on Tuesday, the pain came back and he ended up checking into the ED. During that time it was determined that there is still one stone hanging out that is more than double the size of the previous. That was not news that Scott wanted to hear!
In the midst of those events, we had both taken Monday off of work to take care of something that we just wanted done. We had an appointment at a funeral home to make arrangements. I can't tell you how many times I wanted to back out of the appointment and how much I struggled with it. I had a lot of internal struggles where I would think that if I went through with the appointment I would be demonstrating a lack of faith. I kept thinking that if we made these plans that I would be showing that I did not believe that a miracle could happen. I would like to say that those thoughts don't come back any more, but they do. I try to remind myself that we are just preparing for the possible scenerios while still wishing and praying for the chance to bring Ryan home. If it wasn't for Scott I would not have made it into the funeral home or through the appointment. He took the lead on questions and provided most of the information while I tried not to cry and dug my fingernails in to my hands. I haven't talked much about the appointment, I feel like I am just rambling writing about it. It is just hard to put words to the experience. To walk into a building pregnant with a child and make plans for the child's funeral before he is even born, it just doesn't make sense and it hurts more than I could ever explain.
Early Sunday morning, Scott woke up in incredible pain, so we made a family trip to the ED. Scott ended up with kidney stones, which the experience I am pretty sure is something he never wants to experience again. Scott spent most of the day sleeping off all of the medications, hoping that the stones had all passed and the experience was over. Unfortunately, when he was working on Tuesday, the pain came back and he ended up checking into the ED. During that time it was determined that there is still one stone hanging out that is more than double the size of the previous. That was not news that Scott wanted to hear!
In the midst of those events, we had both taken Monday off of work to take care of something that we just wanted done. We had an appointment at a funeral home to make arrangements. I can't tell you how many times I wanted to back out of the appointment and how much I struggled with it. I had a lot of internal struggles where I would think that if I went through with the appointment I would be demonstrating a lack of faith. I kept thinking that if we made these plans that I would be showing that I did not believe that a miracle could happen. I would like to say that those thoughts don't come back any more, but they do. I try to remind myself that we are just preparing for the possible scenerios while still wishing and praying for the chance to bring Ryan home. If it wasn't for Scott I would not have made it into the funeral home or through the appointment. He took the lead on questions and provided most of the information while I tried not to cry and dug my fingernails in to my hands. I haven't talked much about the appointment, I feel like I am just rambling writing about it. It is just hard to put words to the experience. To walk into a building pregnant with a child and make plans for the child's funeral before he is even born, it just doesn't make sense and it hurts more than I could ever explain.
Tuesday, July 27, 2010
Appointments
We have survived our barrage of appointments and I am pretty sure we are both feeling better. Better doesn't necessarily feel like the right word, but I am going to use it. Are we okay with the fact that our son is not expected to live, NO, but are we making it through each day and have some good moments, yes. It is funny, how you start to feel guilty about the good moments or if you catch yourself laughing or smiling. Maybe funny isn't the best word to use either, but right now, nothing seems right. It is so hard to put things in words and feel like others are going to understand. We do get up everyday and go about our lives, somedays we would definitely rather stay in bed, though neither of us sleep very well. We do laugh and smile, it is hard to be around Sean on a daily basis and not laugh. For those have not gotten that experience, I hope you get to someday. But there is rarely a time when Ryan is far from our thoughts.
For me, one of the hardest things right now is that I don't really feel many movements. Any movements I feel are so minor that I often wonder if I am imagining them. I keep hoping that at any time, the movements will start to feel stronger and that they will get to the point that I can share them with Scott. Unfortunately, the doctor has told me that it may not happen simply because Ryan's arms and legs are so underdeveloped. As a mom, I crave those feelings and that connection.
There are not many updates from our appointments. We got to have another sonogram when we saw the perinatologist and it was wonderful to get to spend some time checking out Ryan. He was more active this time, so we got to see more. He still does not want to cooperate and give us a good profile picture. Scott thinks his stubborness comes from me. Nothing had changed in regard to the developement and size of his chest cavity, so the progonosis remains the same. The doctor said that she is 95% sure of the diagnosis of TD and essentially, it is a 100% fatal. I hate that word! They did notice one new thing and that is, it appears that Ryans fingers are fused together. Doesn't change any outcome, just new information.
After meeting with the neonatologist from the palliative care program (almost like a prenatal hospice), we both felt more comfortable about how things will be handled at the hospital. We were able to share our wishes that Ryan be kept comfortable and not be poked and proded, and that we get to spend as much time with him as we desire. He will not be taken to the nursery or nicu and will be handed to Scott at delivery. Since I will be a scheduled C-section, it will be a little while until I get to actually hold him, but I will be able to see him and talk to him. It feels comforting to know there is a team that is going to support all of our wishes and work towards giving us the best possible experience for what we will be facing.
The final appointment of the week was this morning with my OB. It also went well. Ryan's heart rate is in the 160s (I love hearing his heart beat!). We were able to have a short talk so that she also understands that our goal is to simply be able to spend time with our son. We are hoping to make it to 36 weeks (I am currently at 22), so we have a road ahead of us. We know that parts of that road are going to be hard, but we are trying to focus on enjoying our time with Ryan, no matter how short that time may be.
For me, one of the hardest things right now is that I don't really feel many movements. Any movements I feel are so minor that I often wonder if I am imagining them. I keep hoping that at any time, the movements will start to feel stronger and that they will get to the point that I can share them with Scott. Unfortunately, the doctor has told me that it may not happen simply because Ryan's arms and legs are so underdeveloped. As a mom, I crave those feelings and that connection.
There are not many updates from our appointments. We got to have another sonogram when we saw the perinatologist and it was wonderful to get to spend some time checking out Ryan. He was more active this time, so we got to see more. He still does not want to cooperate and give us a good profile picture. Scott thinks his stubborness comes from me. Nothing had changed in regard to the developement and size of his chest cavity, so the progonosis remains the same. The doctor said that she is 95% sure of the diagnosis of TD and essentially, it is a 100% fatal. I hate that word! They did notice one new thing and that is, it appears that Ryans fingers are fused together. Doesn't change any outcome, just new information.
After meeting with the neonatologist from the palliative care program (almost like a prenatal hospice), we both felt more comfortable about how things will be handled at the hospital. We were able to share our wishes that Ryan be kept comfortable and not be poked and proded, and that we get to spend as much time with him as we desire. He will not be taken to the nursery or nicu and will be handed to Scott at delivery. Since I will be a scheduled C-section, it will be a little while until I get to actually hold him, but I will be able to see him and talk to him. It feels comforting to know there is a team that is going to support all of our wishes and work towards giving us the best possible experience for what we will be facing.
The final appointment of the week was this morning with my OB. It also went well. Ryan's heart rate is in the 160s (I love hearing his heart beat!). We were able to have a short talk so that she also understands that our goal is to simply be able to spend time with our son. We are hoping to make it to 36 weeks (I am currently at 22), so we have a road ahead of us. We know that parts of that road are going to be hard, but we are trying to focus on enjoying our time with Ryan, no matter how short that time may be.
Thursday, July 22, 2010
Choices
In the past three weeks, we have been struggling as individuals and a family to grasp the information we were given in regard to our unborn son, Ryan. Words do not adequately describe the emotions you experience when you are informed that the child you are carrying, will not return to your home, but instead will be going to his eternal home. You ask "why" and get angry. You try to make sense of a situation without answers and you start figuring out how to prepare for your child's birth while also preparing for his death.
The doctors had informed us that we had choices to make in regard to the pregnancy due to the diagnosis we received. Without a lot of discussion, we knew our decision. We were going to continue the pregnancy as long as Ryan's heart was beating and he was not in distress. We are not praying for our child to be healed, though that miracle would be received wholeheartedly. We are simply praying for comfort for our family and mainly for Ryan. The miracle that we pray for is to have a moment with him, even if it is just a few minutes, at his birth. We are not sure at this time how likely it will be that he will be alive at birth, but that is the hope that I hold on to.
We are scheduled to see the perinatologist again on Tuesday and at that same appointment we will meet with a neonatologist to discuss the birth and how we would like it handled. On Wednesday, I will follow back up with my OB. I will try to post an update after those appointments.
To all of those who are including us in your prayers, thank you. We are overwhelming grateful for the support.
The doctors had informed us that we had choices to make in regard to the pregnancy due to the diagnosis we received. Without a lot of discussion, we knew our decision. We were going to continue the pregnancy as long as Ryan's heart was beating and he was not in distress. We are not praying for our child to be healed, though that miracle would be received wholeheartedly. We are simply praying for comfort for our family and mainly for Ryan. The miracle that we pray for is to have a moment with him, even if it is just a few minutes, at his birth. We are not sure at this time how likely it will be that he will be alive at birth, but that is the hope that I hold on to.
We are scheduled to see the perinatologist again on Tuesday and at that same appointment we will meet with a neonatologist to discuss the birth and how we would like it handled. On Wednesday, I will follow back up with my OB. I will try to post an update after those appointments.
To all of those who are including us in your prayers, thank you. We are overwhelming grateful for the support.
Wednesday, July 21, 2010
Our Family
I (with the support of my husband) am writing this blog to share the story of our family. I have never intended to have a blog, in fact, I am normally a pretty private person. During the last two weeks, our lives have drastically changed. We no longer consider ourselves a "normal" family. To explain that, let me introduce our family.
Scott and I met in highschool and against a lot of odds, we have managed to grow up together. This coming January we will celebrate 9 years of marriage. This past May was 15 years of being together. We have seen each other through a lot of good times and we have witnessed each others tough times. Scott is devoted to his family and friends. He is a paramedic at a local emergency room and works alot of odd hours! Even with a crazy work schedule, he still manages to find time for his family. Scott is passionate about sports, to the point that he is not ashamed to proudly be a fan of the Cleveland Indians and the Cleveland Browns!
Just over 5 years ago, we moved into our house and obtained the next member of our family - Lucy. Yes, she is a dog, but she is very much our family. She used to have her crazy moments, but she has calmed down quite a bit (for which I am quite grateful)!
3 and 1/2 years ago, we were blessed with the birth of our son, Sean. The best way that I can describe Sean is that he is full of life. He can be shy in new situations, but he loves his family and friends. There is no good way to describe his smile and laughter. We are pretty certain he is destined to be a class clown. He loves to be tickled and if you really get him going with laughter, he snorts (a lot). I wish I had better words to describe, because this doesn't seem to do him justice.
March of this year, Scott and I were excited to find out that we were expecting! Our due date is Nov. 28, 2010. Sean was even thrilled with the idea of a baby, though we are quite sure, he did not understand the actual concept of a baby at the house. On July 2nd, we went for a 19 week ultrasound and found out that Sean would be having a little brother. Scott and I returned to work and I began to excitedly show off the sonogram pictures. Less than 2 hours later, I received a devastating phone call. My OB called to tell me that there were concerns from the sonogram and it appeared that our son had thanatophoric dysplagia. All I remember was hearing the word "fatal" and that choices would need to be made. From that moment, our family ceased being "normal".
The next week, we had an appointment with a perinatologist and a genetic counselor. After an extensive ultrasound, the diagnosis given by our OB was confirmed. The basic explanation is that our son has a skeletal disorder where his long bones (arms and legs) are significantly shorter than they should be at this point in development. The main concern though is that his chest cavity is underdeveloped and his ribs are short, so his lungs will not be able to develop.
In the midst of everything, we realized that our son needed a name and an identity. His name is Ryan James. I wish I had a good story for the name, but it just came to us. After we had already selected the name, I looked up the meaning for Ryan and it is "little king" - perfect.
Please forgive me for not sharing more of our story here, my heart can only take sharing so much at one time. I will put updates as regular as possible to share our little king and his story, which is ours.
Scott and I met in highschool and against a lot of odds, we have managed to grow up together. This coming January we will celebrate 9 years of marriage. This past May was 15 years of being together. We have seen each other through a lot of good times and we have witnessed each others tough times. Scott is devoted to his family and friends. He is a paramedic at a local emergency room and works alot of odd hours! Even with a crazy work schedule, he still manages to find time for his family. Scott is passionate about sports, to the point that he is not ashamed to proudly be a fan of the Cleveland Indians and the Cleveland Browns!
Just over 5 years ago, we moved into our house and obtained the next member of our family - Lucy. Yes, she is a dog, but she is very much our family. She used to have her crazy moments, but she has calmed down quite a bit (for which I am quite grateful)!
3 and 1/2 years ago, we were blessed with the birth of our son, Sean. The best way that I can describe Sean is that he is full of life. He can be shy in new situations, but he loves his family and friends. There is no good way to describe his smile and laughter. We are pretty certain he is destined to be a class clown. He loves to be tickled and if you really get him going with laughter, he snorts (a lot). I wish I had better words to describe, because this doesn't seem to do him justice.
March of this year, Scott and I were excited to find out that we were expecting! Our due date is Nov. 28, 2010. Sean was even thrilled with the idea of a baby, though we are quite sure, he did not understand the actual concept of a baby at the house. On July 2nd, we went for a 19 week ultrasound and found out that Sean would be having a little brother. Scott and I returned to work and I began to excitedly show off the sonogram pictures. Less than 2 hours later, I received a devastating phone call. My OB called to tell me that there were concerns from the sonogram and it appeared that our son had thanatophoric dysplagia. All I remember was hearing the word "fatal" and that choices would need to be made. From that moment, our family ceased being "normal".
The next week, we had an appointment with a perinatologist and a genetic counselor. After an extensive ultrasound, the diagnosis given by our OB was confirmed. The basic explanation is that our son has a skeletal disorder where his long bones (arms and legs) are significantly shorter than they should be at this point in development. The main concern though is that his chest cavity is underdeveloped and his ribs are short, so his lungs will not be able to develop.
In the midst of everything, we realized that our son needed a name and an identity. His name is Ryan James. I wish I had a good story for the name, but it just came to us. After we had already selected the name, I looked up the meaning for Ryan and it is "little king" - perfect.
Please forgive me for not sharing more of our story here, my heart can only take sharing so much at one time. I will put updates as regular as possible to share our little king and his story, which is ours.
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