By now, you would think that I am pretty good at hearing unexpected news, but I am not. I can hold it together while getting the news, but then I just fall apart later. I had an appointment this morning with the perinatologist in regard to the gestational diabetes. She was not overly concerned because I barely had numbers that were out of the range of normal. For now, I just have to modify my diet and check my blood sugars. She even told me I could have a small piece of cake - of course, only on rare occasions, but still for me that was good news.
The appointment though did include some difficult news to take. A sonogram was done and my amniotic fluid level is low - 7.5, when it was anticipated to be 20 or higher. The problem is that Ryan is developing fluid around his heart and in his abdomen of an amount that appears almost equal to my amniotic fluid. This fluid could cause his heart to stop and the doctor things now there is a strong likelihood that he may not survive until delivery.
To some that news may seem minor, we already knew that Ryan would not be surviving after delivery. But for us, our hopes, dreams and prayers were that we would get to spend some time with Ryan alive. When everything else has been taken away, you learn to wish for those little things. I want to hold my son alive. I want to carry my son until 36 weeks, I know it is just a number, but for me it helps me feel like I have done everything I possibly could for my son and it gives my that much time with him. I wish I could find the words to explain what it is like to count down the life of your child and to cling to every moment.
Please keep us in your prayers. Please pray for Ryan, for him to have the strength to live to delivery if we were meant to have that time. Please pray for comfort and strength for Scott and I. We truly feel every one's prayers.
Friday, September 10, 2010
Wednesday, September 8, 2010
Counting my blessings
I am working tonight on counting my blessings. I got another call from the doctor's office today (I dread those calls) and I have now been diagnosed with gestational diabetes. I really want to throw a pity party for myself because I feel like I can't catch a break, but instead I am going to remind myself how blessed I am.
I am blessed to have a wonderful husband who has been very supportive through a trying time.
I am blessed to be the mother of two boys.
I am blessed by an incredible support system of family, friends, church members and even strangers who are keeping my family in their prayers.
I am blessed to have a home that keeps my family safe and dry.
I am blessed to have a job, though at times stressful, it has given me the opportunity to work with some wonderful people.
I am blessed that my husband has a job (and that his kidney stones are gone!)
I am blessed to have some incredible doctors taking care of me and Ryan.
I am blessed by moments of laughter, smiles and even tears.
I am blessed.
Thought I would include some recent family fun pictures as a reminder of the good moments.
Wednesday, September 1, 2010
Delivery date
I'm sorry I did not update this weekend as I had planned. We actually had a weekend that was jam packed with family activities. We were able to take Sean to see Nickelodeon Story Time Live, which had performances from some of Sean's favorite shows. Of course, his favorite part was the Backyardigans. He really did not interact with what was happening during the show, he just sat with his mouth open in awe. On Sunday, we took him to a Rangers game and he had a blast. He had his giant foam finger that he kept hitting people with and he kept asking why the "green team" (Oakland A's) were striking out the Rangers. I didn't enjoy the heat too much, the swelling was out of control, but Sean lasted all 9 innings. That was even with me trying to encourage him to say he was ready to go. I think he will take after his dad for his love of sports.
I haven't written much about Sean's interactions with Ryan, so here is a little insight. Sean is very aware that I am pregnant and has known since around 12 weeks. Before we knew that we where having a boy, Sean and I would talk and he would go back and forth about wanting a sister or brother. We finally had a talk that God had already decided and we do not get to choose. He then went on to repeat that to teachers at his daycare. When we first found out Ryan's diagnosis, we didn't tell Sean anything, not Ryan's name or that he was even a boy. But once we started to wrap our minds around things (as much as possible), we started by just telling Sean that he was going to have a little brother and that his name is Ryan. We have always said that we would be honest with Sean and answer his questions, but not give him more information than he asked for. The first time I talked to Sean about what would happen to Ryan was when Sean asked why there is not a bed at the house for Ryan. I explained that Ryan would not come home with us from the hospital, to which Sean replied "why can't he walk". Then we had to discuss that babies are too little to walk, so then Sean told me that I could carry him and even demonstrated how to do so. At that point, I explained lungs to Sean to be the best of my ability and that Ryan's lungs are not going to work. For some reason that has satisfied him and he went off to play. Most of the time now, Sean likes to hug my belly and give Ryan kisses. He has also been known to tell him "good morning" and "night night". He will even tickle him on occasions. He also loves to tell Ryan stories - I normally don't understand the stories, but most recently he has been telling him the story of David and Goliath. There are times were we will go days and Sean won't mention Ryan and then out of the blue, he will start back up. The love he demonstrates already amazes me.
I followed back up with my OB today and there weren't any real changes. My feet are still swelling, but everything else is looking good. Ryan's heartbeat is still strong. Today we did schedule Ryan's delivery date for November 2nd. It may be changed by a day or two, but he will be delivered the first week of November, unless there is a medical reason to deliver before that date. There is a bitter sweetness to having a date. As a mom, I want to meet and hold my son, but then I think about it and realize that I likely just chose the day my son will die...
I haven't written much about Sean's interactions with Ryan, so here is a little insight. Sean is very aware that I am pregnant and has known since around 12 weeks. Before we knew that we where having a boy, Sean and I would talk and he would go back and forth about wanting a sister or brother. We finally had a talk that God had already decided and we do not get to choose. He then went on to repeat that to teachers at his daycare. When we first found out Ryan's diagnosis, we didn't tell Sean anything, not Ryan's name or that he was even a boy. But once we started to wrap our minds around things (as much as possible), we started by just telling Sean that he was going to have a little brother and that his name is Ryan. We have always said that we would be honest with Sean and answer his questions, but not give him more information than he asked for. The first time I talked to Sean about what would happen to Ryan was when Sean asked why there is not a bed at the house for Ryan. I explained that Ryan would not come home with us from the hospital, to which Sean replied "why can't he walk". Then we had to discuss that babies are too little to walk, so then Sean told me that I could carry him and even demonstrated how to do so. At that point, I explained lungs to Sean to be the best of my ability and that Ryan's lungs are not going to work. For some reason that has satisfied him and he went off to play. Most of the time now, Sean likes to hug my belly and give Ryan kisses. He has also been known to tell him "good morning" and "night night". He will even tickle him on occasions. He also loves to tell Ryan stories - I normally don't understand the stories, but most recently he has been telling him the story of David and Goliath. There are times were we will go days and Sean won't mention Ryan and then out of the blue, he will start back up. The love he demonstrates already amazes me.
I followed back up with my OB today and there weren't any real changes. My feet are still swelling, but everything else is looking good. Ryan's heartbeat is still strong. Today we did schedule Ryan's delivery date for November 2nd. It may be changed by a day or two, but he will be delivered the first week of November, unless there is a medical reason to deliver before that date. There is a bitter sweetness to having a date. As a mom, I want to meet and hold my son, but then I think about it and realize that I likely just chose the day my son will die...
Friday, August 27, 2010
Appointment
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.
We appreciate every one's support and prayers more than I can explain. I will try to update more this weekend.
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.
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