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.
Tuesday, July 27, 2010
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.
Subscribe to:
Posts (Atom)