Yesterday, I so hoped and prayed would be the turning point for our baby girl. Unfortunately, that was not the case. The fluid has increased over the course of the week. It has increased to 5.7 cm outside her head and neck. There is a significant amount of fluid surrounding her organs, which you can visibly see on the sonogram. There is a darkness surrounding her organs due to the swelling from the fluid.You can also see a darkening on her skull, due to the swelling. Her lungs are having a hard time functioning, due to the hydrops, causing her heart to work extra hard. Our doctor feels her heart will not be able to sustain what it is doing for long.
It was also concerning that over the week our baby did not grow. Last week she was measuring on track, this week she is measuring a week behind. Our days are very few now, unless God performs a miracle.
I feel I have still remained hopeful, until yesterday. If you could see the sonogram, you would understand why. My heart breaks for this baby. Our doctor let us know, in not so many words that this is the most severe case of hydrops he has seen.
I love this baby so much. I want her to live more than anything. I am not going to give up the small chance of a miracle until it's over. However, I am trying to be cautiously optimistic, due to what the doctors are telling me.
I wanted to thank each of you who have been walking this road with us week to week. You have all prayed with us, cried with us, and asked God for a miracle. I know we have done our part.
Our next appointment is next Thursday at 10:30. My regular OB has said that if I feel she has passed before then, she will squeeze me in to check the heartbeat. I have been blessed with great doctors in this process. I am grateful for that.
A sweet friend of mine reminded me of the Romans 5: 3-5 which provides me with so much comfort.
Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. 3 Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.
We love you all,
Kamara and Rod
Thursday, October 27, 2011
Thursday, October 20, 2011
An Update of Our Appointment Today
Hello Everyone,
I wanted to let you all know, we did not get the news we were hoping for today. The hydrops have gotten worse, taking up more of her body. Our doctors feel that most likely at this point, it's not going to get better. However, I still see a tiny, little baby with hands and feet that move, and a strong heart beat.(She was active through the entire sonogram.) I am not going to give up the fight until our baby girl does.Our next appointment is next Wednesday. I am 18 weeks along, and she still has time to turn this pregnancy around. I am praying that's what happens! Fight girl, fight!
I had some days this week that were difficult. I felt frustrated and angry. I am not mad at God. I am just disappointed this is my life. Rod and I were so excited about the idea of a third child, and having a healthy, full pregnancy with no drama. How does this happen to someone twice?
I refuse to let myself rest there. When you go through something, you soon learn about all the many others that have gone through similiar experiences. Life is not easy for anyone. That's what heaven is for. Many significant women struggled with their pregnancy, infertility, etc.. in the Bible. Elizabeth, Mary and Hannah are just a few. God had big plans for each of them. I know that regardless, this baby's life has purpose, and we have her testimony.
Having said that, I still have lots of rough days. I love this baby so much. I don't want to lose her. I want a crystal ball that tells me what's next. The waiting and waiting is so hard. I know that my faith has strengthened though. We are totally dependent on God, with absolutely no control. Not easy!
Thank you for praying for our family. We love you all. If you are interested, here is another miracle story.
http://rosiefoster.org/default.as
Blessings, Kam
I wanted to let you all know, we did not get the news we were hoping for today. The hydrops have gotten worse, taking up more of her body. Our doctors feel that most likely at this point, it's not going to get better. However, I still see a tiny, little baby with hands and feet that move, and a strong heart beat.(She was active through the entire sonogram.) I am not going to give up the fight until our baby girl does.Our next appointment is next Wednesday. I am 18 weeks along, and she still has time to turn this pregnancy around. I am praying that's what happens! Fight girl, fight!
I had some days this week that were difficult. I felt frustrated and angry. I am not mad at God. I am just disappointed this is my life. Rod and I were so excited about the idea of a third child, and having a healthy, full pregnancy with no drama. How does this happen to someone twice?
I refuse to let myself rest there. When you go through something, you soon learn about all the many others that have gone through similiar experiences. Life is not easy for anyone. That's what heaven is for. Many significant women struggled with their pregnancy, infertility, etc.. in the Bible. Elizabeth, Mary and Hannah are just a few. God had big plans for each of them. I know that regardless, this baby's life has purpose, and we have her testimony.
Having said that, I still have lots of rough days. I love this baby so much. I don't want to lose her. I want a crystal ball that tells me what's next. The waiting and waiting is so hard. I know that my faith has strengthened though. We are totally dependent on God, with absolutely no control. Not easy!
Thank you for praying for our family. We love you all. If you are interested, here is another miracle story.
http://rosiefoster.org/default.as
Blessings, Kam
Friday, October 14, 2011
Our Appointment Today
Hello Friends and Family,
We did not get the news we were hoping for today at our appointment. The hydrops around her body have gotten worse. Our doctor was not able to even detect the severity of the heart defect, due to the fluid surrounding her body. The fluid is her body's response to the Turner's Syndrome.
He let us know that this could go on for a few days, or it could go on for up to 10 weeks. I know this is going to be a long road of hoping and praying for a miracle. I still am praying for that. I refuse to give up hope. She is still hanging in there, so I am going to too. Her body could still choose to respond to the fluid, and fight against it. I will pray for that everyday.
Earlier this week, as the rain poured down at night. I felt God's presence. I felt as though he was reminding me that he cries for me too. In a way it felt as if they were tears from heaven.
We cannot thank you enough for all the comfort that you have each provided. Your prayers, your facebook messages, your text messages, and your words of encouragement. We love each of you so very much. You are keeping us strong in our weak moments.
There are so many miracles stories out there. Check out one here.
http://crosshealedhearts.blogspot.com/2011/07/jillians-miracle-girl.html
I know this may not be the path our little girl takes. I have found comfort though in knowing, that with God, all things are possible. Keep praying! We love ya'll!
-Kam and Rod
We did not get the news we were hoping for today at our appointment. The hydrops around her body have gotten worse. Our doctor was not able to even detect the severity of the heart defect, due to the fluid surrounding her body. The fluid is her body's response to the Turner's Syndrome.
He let us know that this could go on for a few days, or it could go on for up to 10 weeks. I know this is going to be a long road of hoping and praying for a miracle. I still am praying for that. I refuse to give up hope. She is still hanging in there, so I am going to too. Her body could still choose to respond to the fluid, and fight against it. I will pray for that everyday.
Earlier this week, as the rain poured down at night. I felt God's presence. I felt as though he was reminding me that he cries for me too. In a way it felt as if they were tears from heaven.
We cannot thank you enough for all the comfort that you have each provided. Your prayers, your facebook messages, your text messages, and your words of encouragement. We love each of you so very much. You are keeping us strong in our weak moments.
There are so many miracles stories out there. Check out one here.
http://crosshealedhearts.blogspot.com/2011/07/jillians-miracle-girl.html
I know this may not be the path our little girl takes. I have found comfort though in knowing, that with God, all things are possible. Keep praying! We love ya'll!
-Kam and Rod
Monday, October 10, 2011
Update on Our Sweet Girl
Hello Friends and Family,
We wanted to update everyone that today our baby was diagnosed with Turner's Syndrome. Many of you may have never heard of Turner's Syndrome. To learn more, click here. http://www.bing.com/health/article/mayo-MADS01017/Turner-syndrome?q=turner+syndrome
Our doctor reminded me again today that he was "not so sure the hydrops would resolve themselves".
We know that our God is capable of performing miracles. He certainly has proven that to us in Ryleigh's life. Regardless of what the doctors are saying, we are praying that he will perform a miracle once again for our family. I will go in weekly for sonograms with our high risk doctor to see what the fluid or hydrops are doing. If the hydrops have gotten worse this week, than last week; our days are very numbered. Over time he will be able to observe the seriousness of her heart defect.
Many of you gathered in prayer for Rod and I and our family last night. We cannot express enough how much it meant to us.We truly feel blessed and so loved by each of you. I have felt so much strength today, in knowing that we are not alone in this process. I have felt your prayers all around me. I know there are so many of you that are praying for us, and we have never even met. Thank you so much. Last night was the first night since the diagnosis that I did not wake up many times in tears. Rod has joked with me that I am trying to "cry out all the excess fluid for our baby". Humor is good in these situations!
Regardless of what happens with this sweet baby's life, I have been given peace today in knowing that ultimately God is in control. I know that if he chooses to, in an instant he can turn this pregnancy around. I know that he has a plan, and I have to accept whatever that may be. That doesn't mean I have to like it though!
A sweet friend of mine reminded me of the verse "He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield." Psalms 91:4.
Keep the prayers and scriptures coming! It truly makes a difference! We love ya'll! -Kam
We wanted to update everyone that today our baby was diagnosed with Turner's Syndrome. Many of you may have never heard of Turner's Syndrome. To learn more, click here. http://www.bing.com/health/article/mayo-MADS01017/Turner-syndrome?q=turner+syndrome
Our doctor reminded me again today that he was "not so sure the hydrops would resolve themselves".
We know that our God is capable of performing miracles. He certainly has proven that to us in Ryleigh's life. Regardless of what the doctors are saying, we are praying that he will perform a miracle once again for our family. I will go in weekly for sonograms with our high risk doctor to see what the fluid or hydrops are doing. If the hydrops have gotten worse this week, than last week; our days are very numbered. Over time he will be able to observe the seriousness of her heart defect.
Many of you gathered in prayer for Rod and I and our family last night. We cannot express enough how much it meant to us.We truly feel blessed and so loved by each of you. I have felt so much strength today, in knowing that we are not alone in this process. I have felt your prayers all around me. I know there are so many of you that are praying for us, and we have never even met. Thank you so much. Last night was the first night since the diagnosis that I did not wake up many times in tears. Rod has joked with me that I am trying to "cry out all the excess fluid for our baby". Humor is good in these situations!
Regardless of what happens with this sweet baby's life, I have been given peace today in knowing that ultimately God is in control. I know that if he chooses to, in an instant he can turn this pregnancy around. I know that he has a plan, and I have to accept whatever that may be. That doesn't mean I have to like it though!
A sweet friend of mine reminded me of the verse "He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield." Psalms 91:4.
Keep the prayers and scriptures coming! It truly makes a difference! We love ya'll! -Kam
Saturday, October 8, 2011
Pray for Our Sweet Baby Girl
Hello Friends and Family,
As most of you know, Rod and I were anxious and excited to have our 16 week sonogram yesterday. All had been well in this pregnancy, so we figured this would just be confirmation that everything was going smoothly. We were also excited about finding out the sex of the baby.
We went to the High Risk appointment just as planned.The sonographer seemed unusually quiet to us. When I asked her if everything was okay, she said that "typically she is supposed to let the doctor do the talking, and he would go over it with us." We had to wait quite some time, and we both found it weird that she was so quiet. Immediately, our doctor came in and said, "There is something wrong with the baby." My whole world came crashing down.
Basically, we were told our sweet baby girl has either Turner's Syndrome, Downs Syndrome, or Trisomy 13 or 18. He said the amount of excess fluid in her body is significant, and severe. Her chance of survival is very slim at this point, regardless of what the diagnosis is. Typically at this point in the pregnancy, babies that have fluid will either progress and continue to get fluid, or the fluid decreases and goes away. Our doctor felt as though the amount of fluid he saw was a good indication that things are not going in the right direction. We immediately got an amniocentesis so that testing can be done to clarify exactly what we are dealing with. We will receive the results of that test on Monday.
Regardless of the results, we were not given much hope. Our doctor feels as though most likely the baby will die within the next few weeks. I will go in weekly for a sonogram/checkups to see if the baby's heart is still beating.
I am completely at a loss of words over this. I was so hopeful that this pregnancy was going to go smoothly, and that I was going to carry this baby full term. Although our pregnancy with Ryleigh and this pregnancy has not gone the way we had planned, they are not related at all. The doctor told us that our chances of something like this happening again, are 1 percent.
I have spent quite a bit of time crying since receiving the news yesterday. I layed down last night crying, and she moved, reminding me that she was still there. God has given me the gift of feeling movement occasionally, and I am grateful for that. I am trying to cherish these moments, because I know that most likely those days are numbered. I never thought I would have to endure seeing a baby Ryleigh's size again in my life. Unfortunately, most likely I will be holding a child much smaller. It devastates me.
It's hard for me to understand why this has happened, but I know that God is carrying me through. Yesterday as I got up off my knees in prayer, I felt as though God was telling me, "It's going to be okay." A good friend of mine reminded me of the verse, "The Lord is near to the brokenhearted and saves those crushed in spirit." Psalms 34:18.
I am not sure what it is, but I know somehow something good is going to come from this. Maybe I won't figure it out for years, but I know that day will come.
Please pray for our family during this time. We are sad, in shock, and trying to cope with it all. We love you all. Blessings, Kamara
As most of you know, Rod and I were anxious and excited to have our 16 week sonogram yesterday. All had been well in this pregnancy, so we figured this would just be confirmation that everything was going smoothly. We were also excited about finding out the sex of the baby.
We went to the High Risk appointment just as planned.The sonographer seemed unusually quiet to us. When I asked her if everything was okay, she said that "typically she is supposed to let the doctor do the talking, and he would go over it with us." We had to wait quite some time, and we both found it weird that she was so quiet. Immediately, our doctor came in and said, "There is something wrong with the baby." My whole world came crashing down.
Basically, we were told our sweet baby girl has either Turner's Syndrome, Downs Syndrome, or Trisomy 13 or 18. He said the amount of excess fluid in her body is significant, and severe. Her chance of survival is very slim at this point, regardless of what the diagnosis is. Typically at this point in the pregnancy, babies that have fluid will either progress and continue to get fluid, or the fluid decreases and goes away. Our doctor felt as though the amount of fluid he saw was a good indication that things are not going in the right direction. We immediately got an amniocentesis so that testing can be done to clarify exactly what we are dealing with. We will receive the results of that test on Monday.
Regardless of the results, we were not given much hope. Our doctor feels as though most likely the baby will die within the next few weeks. I will go in weekly for a sonogram/checkups to see if the baby's heart is still beating.
I am completely at a loss of words over this. I was so hopeful that this pregnancy was going to go smoothly, and that I was going to carry this baby full term. Although our pregnancy with Ryleigh and this pregnancy has not gone the way we had planned, they are not related at all. The doctor told us that our chances of something like this happening again, are 1 percent.
I have spent quite a bit of time crying since receiving the news yesterday. I layed down last night crying, and she moved, reminding me that she was still there. God has given me the gift of feeling movement occasionally, and I am grateful for that. I am trying to cherish these moments, because I know that most likely those days are numbered. I never thought I would have to endure seeing a baby Ryleigh's size again in my life. Unfortunately, most likely I will be holding a child much smaller. It devastates me.
It's hard for me to understand why this has happened, but I know that God is carrying me through. Yesterday as I got up off my knees in prayer, I felt as though God was telling me, "It's going to be okay." A good friend of mine reminded me of the verse, "The Lord is near to the brokenhearted and saves those crushed in spirit." Psalms 34:18.
I am not sure what it is, but I know somehow something good is going to come from this. Maybe I won't figure it out for years, but I know that day will come.
Please pray for our family during this time. We are sad, in shock, and trying to cope with it all. We love you all. Blessings, Kamara
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