Well, today we went to get another ultrasound-28 weeks along. The lady who did the initial ultrasound before the specialist was wonderful. She was the one there when we first found out. She gave us some pictures, which I am so grateful to have and cherish. The specialist came and did a more thorough scan of Samuel-looking in more detail at his mouth, hands, heart, and brain. He is very surprised that everything came back negative from the Baylor labs. He said that when Samuel is delivered we can do some blood work and possibly (still not 100%) find the diagnosis. He also mentioned that this actually could be linked to Jeff and me. It could possibly be a recessive gene that he and I have that could cause this. When Samuel is delivered and bloodwork is done, we should be able to find this information out. Samuel may have an extra finger, but we aren't sure. He also said that Samuel's ear was set lower than normal. Also, Samuel's head is measuring at 32 weeks and I am only 28 weeks along. The doctor said this is due to the extra fluid in his brain. We will have to determine at a later time, if a C-section will be required because of this condition. The doctor also said that, since we were unable to find a diagnosis, that the prognosis is really just a guessing game. We really can't say if he will die immediately, shortly thereafter, in the womb, or maybe a little longer. Basically, we will find out when he comes out of the womb...whether or not he is breathing on his own and can eat on his own. Gosh.... this is a lot to handle.
On a side note, it was really exciting to see Samuel. He wasn't always cooperative with the doctor. He was moving and kicking around a lot. It was kind of fun to see him like that. At the same time, it was a little strange seeing the 3-D images because of the cleft lip and jaw that is set back really far. I guess you just expect that your baby will look perfect. But I guess he is really perfect, because he is our child. It still is hard. This whole situation is really hard to come to terms with. Some days it just seems like a dream.
To come: neonatologist next week, ob in two weeks, ultrasound in 4 weeks. And...who knows what else???
Friday, August 29, 2008
Wednesday, August 27, 2008
OB appt. today
Today I went to the OB for my regular check-up. We discussed the "next step". My OB will contact the neonatologist. Then the neonatologist (pediatric specialist) will contact us and we will meet her for an appointment. We will be able to discuss a "game plan" for if Samuel survives. As in-surgeries, feeding, etc. Also, we may be able to get a better prognosis after the neonatologist reviews our case. In the meantime, we wait, again! We have our ultrasound on Friday and then not sure when we get to meet with neonatologist. Otherwise, a healthy pregnancy.
Saturday, August 23, 2008
Pictures!
Hey Everyone!
My friend Suzy, who is an amazing photographer, has taken some fabulous pictures of Samuel (belly pictures) and of Dawson. You all are welcome to view by going to the website: www.bohemianperspective.com and then going to "client login" in the bottom right hand corner. Then enter the password: Rowbotham (case sensitive). She did a great job and we can't thank her enough. These will be pictures to be cherished for a life time. And she lives in the Springs, so if anyone needs pictures-she is the woman!
On another note. The past couple days have been pretty good. As always, Dawson and I have just been trying to keep busy. We have been watching the Olympics a lot too. Jeff says the Olympics are bad for family values. The reason being that we (Dawson included) have been eating on the couch and staying up late (too late). Oh well, it only happens once every 4 years. Not to mention, Dawson actually seems to enjoy it. Samuel has been quite the active little guy lately. It was been really fun to start to feel him kick me in the ribs (ha!). But just is more evidence that is ok (for now). I kind of wish he could just stay in my belly forever-if that meant that he would stay alive. But, again, I can't predict the future and God is bigger. Just getting to hold him in my arms will be a blessing. That is it. Next week should be a big week-doctors appointment on Wednesday and then ultrasound on Friday. I will keep you posted. Keep praying for a miracle.
My friend Suzy, who is an amazing photographer, has taken some fabulous pictures of Samuel (belly pictures) and of Dawson. You all are welcome to view by going to the website: www.bohemianperspective.com and then going to "client login" in the bottom right hand corner. Then enter the password: Rowbotham (case sensitive). She did a great job and we can't thank her enough. These will be pictures to be cherished for a life time. And she lives in the Springs, so if anyone needs pictures-she is the woman!
On another note. The past couple days have been pretty good. As always, Dawson and I have just been trying to keep busy. We have been watching the Olympics a lot too. Jeff says the Olympics are bad for family values. The reason being that we (Dawson included) have been eating on the couch and staying up late (too late). Oh well, it only happens once every 4 years. Not to mention, Dawson actually seems to enjoy it. Samuel has been quite the active little guy lately. It was been really fun to start to feel him kick me in the ribs (ha!). But just is more evidence that is ok (for now). I kind of wish he could just stay in my belly forever-if that meant that he would stay alive. But, again, I can't predict the future and God is bigger. Just getting to hold him in my arms will be a blessing. That is it. Next week should be a big week-doctors appointment on Wednesday and then ultrasound on Friday. I will keep you posted. Keep praying for a miracle.
Wednesday, August 20, 2008
Hmmm...
There are some things in life that I really can trust God in, while there are others that I can't. I have yet to figure out the reason why this is so. I think that with the baby situation I immediately decided to give it over to God. Whereas in other situations in my life, I have first tried to do it myself-trust myself. That is where I went all wrong. Then the situation (whatever it may have been) just continued-never fully being resolved because of my desire to put it in my hands. What I have learned from this: trust God first (it makes things a lot easier), it is never to late to let go and give it to God (he wanted it in the first place), and finally that God can restore what we screwed up (thank goodness). Today has been difficult. Please pray for our family unit. I must learn to see hope in all circumstances.
Tuesday, August 19, 2008
With God all things are possible.
I find this hard to understand. Samuel seems so normal-kicking in my belly. But he isn't. Lately I have been struggling with that thought. How it can seem so normal, yet be so abnormal. Again, that is one of those questions that I just have to stop trying to make sense of. I am actually really excited about our ultrasound next Friday. I will be happy to see Samuel-alive and moving around in my belly. I know that I may never meet him alive outside of the womb. Despite this, I still have this sliver of hope-that just maybe when they do the ultrasound he will have a brain and will be healed. I can hope for this, but not expect this. I believe that God can perform miracles today. It may not be his will for Samuel to be healed and to survive very long, but if it is I will be estactic. If it isn't-that is ok too. Again, I will just have to continue to remind myself of God's character and that He knows what is planned for our lives. It is all in the story He has written for our family. At the same time, I will not forget that the impossible is possible with God. Let us not forget that.
Friday, August 15, 2008
Prepare for the worst, Hope for the Best
Psalm 91: 1-4 (New living translation)
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him. For he will rescue you from every trap and protect you from deadly disease. He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.
Yesterday was a hard day again, for both Jeff and I. On Wednesday we met with a couple who had lost a baby at 28 weeks-reason unknown (they did not know anything was wrong beforehand). It was hard emotionally. At the same time, it was really good to meet with them and encouraging. Encouraging to see hope after such a hard time, being able to have other children, and learning more of the personality of Christ. They gave us great advice that I think will help us in some decisions we need to make. We talked about having a funeral and being prepared for one. Initially, I felt like this was telling Samuel, "I have given up on you". But that is not truth. I think we should prepare for the worst, but hope for the best. I don't think this means I am giving up hope on Samuel. Samuel is a fighter. I think he has already fought pretty hard so far. There is no way that I would ever give up hope. With that said, I still want to be real with myself and the reality of the situation. I don't want to give myself false hope.
Anyway, the doctor called today and said that the specialist wants to do another ultrasound at the end of the month. He wants to see how the body is growing. I am not sure the point of this since prognosis is still the same, but whatever, I do want they tell me to do (at least sometimes). We will also be meeting with ob at end of month for regular appointment and to discuss further the results (again, not really sure what to discuss, since they didn't find anything).
Dawson and I have been keeping busy. I have just been trying to keep up with house, but still get out of the house everyday. Dawson took a nap today, so it has been quite nice. I think I will join him. I love him!! He is such a character lately. He has been telling me "you're a crazy driver" and "stop talking to me". These are just some of the aftermaths from mamaw. Yikes!! He is starting to get an attitude...we need to nip this in the butt!
Thanks all for listening. Keep praying. God is big!
Those who live in the shelter of the Most High will find rest in the shadow of the Almighty. This I declare about the Lord: He alone is my refuge, my place of safety; he is my God, and I trust him. For he will rescue you from every trap and protect you from deadly disease. He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.
Yesterday was a hard day again, for both Jeff and I. On Wednesday we met with a couple who had lost a baby at 28 weeks-reason unknown (they did not know anything was wrong beforehand). It was hard emotionally. At the same time, it was really good to meet with them and encouraging. Encouraging to see hope after such a hard time, being able to have other children, and learning more of the personality of Christ. They gave us great advice that I think will help us in some decisions we need to make. We talked about having a funeral and being prepared for one. Initially, I felt like this was telling Samuel, "I have given up on you". But that is not truth. I think we should prepare for the worst, but hope for the best. I don't think this means I am giving up hope on Samuel. Samuel is a fighter. I think he has already fought pretty hard so far. There is no way that I would ever give up hope. With that said, I still want to be real with myself and the reality of the situation. I don't want to give myself false hope.
Anyway, the doctor called today and said that the specialist wants to do another ultrasound at the end of the month. He wants to see how the body is growing. I am not sure the point of this since prognosis is still the same, but whatever, I do want they tell me to do (at least sometimes). We will also be meeting with ob at end of month for regular appointment and to discuss further the results (again, not really sure what to discuss, since they didn't find anything).
Dawson and I have been keeping busy. I have just been trying to keep up with house, but still get out of the house everyday. Dawson took a nap today, so it has been quite nice. I think I will join him. I love him!! He is such a character lately. He has been telling me "you're a crazy driver" and "stop talking to me". These are just some of the aftermaths from mamaw. Yikes!! He is starting to get an attitude...we need to nip this in the butt!
Thanks all for listening. Keep praying. God is big!
Tuesday, August 12, 2008
This too shall pass
This is a poem by Helen Steiner Rice. Her poetry is so inspiring and encouraging. I have found myself reading her words and being uplifted. Although this world brings so many unknowns, especially in our circumstances right now- I know that God is real and I can rest assured in that. My world may fall apart here on earth, but I have hope that can't compare to any adversity that I may face. I may not know all the things I desire to know, but that is ok. I am confident that God does know the answers and that is good enough for me. I know not everyone can have the blind faith that I feel like I have at this moment in my life, but in reality it really isn't that blind after all. I feel God's peace and presence-isn't that real enough?
This Too Shall Pass
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.
Helen Steiner Rice
This Too Shall Pass
If I can endure for this minute
Whatever is happening to me,
No matter how heavy my heart is
Or how dark the moment may be-
If I can remain calm and quiet
With all the world crashing about me,
Secure in the knowledge God loves me
When everyone else seems to doubt me-
If I can but keep on believing
What I know in my heart to be true,
That darkness will fade with the morning
And that this will pass away, too-
Then nothing in life can defeat me
For as long as this knowledge remains
I can suffer whatever is happening
For I know God will break all of the chains
That are binding me tight in the darkness
And trying to fill me with fear-
For there is no night without dawning
And I know that my morning is near.
Helen Steiner Rice
Monday, August 11, 2008
Results.
Better explanation from Jeff: Jeff actually talked to the doctor today
Results of the CGH came back normal - meaning this shouldn't effect future pregnancies, but also doesn't let us know what caused Samuel's abnormalities. It's extremely rare to have these abnormalities and not have and identifiable syndrome. The perinatologist mentioned 3C Syndrome - (Cerebellar, Craniofacial and Cardiac abnormalities) but they can't confirm that. There have only been 25 babies identified with this since 1987. The babies genes and our genes are totally normal and they don't know what caused the spontaneous structural malformation - it may be a syndrome that hasn't been identified yet. Once abnormality can be by chance, but three leads them to believe that there is some sort of syndrome that caused it. Once he is born, they can do more testing to see what it is, but this does not change the prognosis. Our next step is to meet with a neonatologist who will take another look at Samuel and advise us on how to treat the pregnancy. The cleft lip and palette will need to be addressed right away because of feeding issues, but nothing can be done with the brain - which is the major issue. They will let us know more details about delivery, what surgeries will be needed, etc.
Kristy's notes:
Well, we got the results today. And... it is not genetic and Baylor was unable to identify the problem. This means that it is not related to either Jeff or I, but whatever the problem is-it is so rare that it can't be identified. So, now this still leaves us with so many questions and unknowns. I think that is what drives me crazy. I have some peace knowing that we have a potential to have more kids. At the same time, I just wish I knew what was wrong with my baby. This means that it was completely spontaneous. The odds of this happening are unreal. Our next step is to see a neonatalogist.
Results of the CGH came back normal - meaning this shouldn't effect future pregnancies, but also doesn't let us know what caused Samuel's abnormalities. It's extremely rare to have these abnormalities and not have and identifiable syndrome. The perinatologist mentioned 3C Syndrome - (Cerebellar, Craniofacial and Cardiac abnormalities) but they can't confirm that. There have only been 25 babies identified with this since 1987. The babies genes and our genes are totally normal and they don't know what caused the spontaneous structural malformation - it may be a syndrome that hasn't been identified yet. Once abnormality can be by chance, but three leads them to believe that there is some sort of syndrome that caused it. Once he is born, they can do more testing to see what it is, but this does not change the prognosis. Our next step is to meet with a neonatologist who will take another look at Samuel and advise us on how to treat the pregnancy. The cleft lip and palette will need to be addressed right away because of feeding issues, but nothing can be done with the brain - which is the major issue. They will let us know more details about delivery, what surgeries will be needed, etc.
Kristy's notes:
Well, we got the results today. And... it is not genetic and Baylor was unable to identify the problem. This means that it is not related to either Jeff or I, but whatever the problem is-it is so rare that it can't be identified. So, now this still leaves us with so many questions and unknowns. I think that is what drives me crazy. I have some peace knowing that we have a potential to have more kids. At the same time, I just wish I knew what was wrong with my baby. This means that it was completely spontaneous. The odds of this happening are unreal. Our next step is to see a neonatalogist.
Saturday, August 9, 2008
No news!
We did not hear anything on Friday. We are so anxious. I felt a wreck on Friday, now I have to wait until Monday to hear something. Monday is going to be even more stressful. We will let you know as soon as we find out something.
Thursday, August 7, 2008
A Busy Week
We have definitely been keeping busy since my parents are here. They are wearing me out! We went to the Zoo yesterday for four hours. I took a nap on the way home, but not Dawson. He has been going strong, but quite a bit cranky from lack of sleep. I think he is too busy playing with mamaw and papaw to get any sleep. Today we went to the outlets and shopped til we (I) dropped. Dawson did amazing, considering it probably wasn't his idea of fun. Mamaw and Papaw have taken Daws to Walmart-I am a little nervous to see what he comes home with...???
Jeff talked to the doctor's office today. No news yet. Although Tammy (she is the nurse for the specialist, who is super helpful and amazing) talked to the genetic counselor today and we will either here tomorrow or Monday. Please pray that it is tomorrow. It would be nice to have my parents here when we hear the news. We just want to know what is going on with our little Samuel. My heart is heavy for the news. I am nervous and scared, but need to know how to prepare.
Jeff talked to the doctor's office today. No news yet. Although Tammy (she is the nurse for the specialist, who is super helpful and amazing) talked to the genetic counselor today and we will either here tomorrow or Monday. Please pray that it is tomorrow. It would be nice to have my parents here when we hear the news. We just want to know what is going on with our little Samuel. My heart is heavy for the news. I am nervous and scared, but need to know how to prepare.
Monday, August 4, 2008
Denver.
What a nice day! Today me, Dawson, and the parents went to Denver. In Denver, we visited the Aquarium and Children's Museum. It was great fun. Dawson really loved the sea turtle and the tiger at the aquarium (yes there was a tiger there ??). He was a crazy man at the children's museum-very stimulating, maybe a little too much. He crashed on the way home. Later we went out to eat at a Chinese buffet-I think the best I have ever been too. The grandparents definitely spoil him. He is always getting ice cream, juice boxes, and toys (at every shopping trip). He tells mammal, "I need that". I will have to do a grandparents detox when they leave. Oh well, it is only a week and so worth it!! That is what grandparents are for! Who knows what adventures await us tomorrow!?
On another note. I find it hard just thinking of the reality of Samuel. I know Jeff has looked into some burial/funeral stuff. It is really difficult to think about. I really just have to take it one day at a time, otherwise it is too overwhelming. I almost feel like I am a ticking bomb-wondering if this is going to be his last kick. I know I have to stop thinking about it-it makes me go mad. Last night, I just lay in bed thinking about the ultrasound and hearing the devastating news. Replaying it over and over again. I have got to stop this. But when i do think this way, I am reminded that this is for God's glory. I think of the story of the blind man being healed. Followers of Jesus asked if this was because of a sin committed by his family. Jesus replied that indeed it was not, but for the glory of God. Let me not forget that. I also have not given up hope-hope for a miracle. God is big and he can give Samuel a brain. I know that even though he is capable, it doesn't mean that is his plan. And that is ok, but I think of a huge miracle happening. I wouldn't be angry at God if it didn't. Thank goodness He knows what He is doing. He did create the universe, I guess I can trust him with this little thing in comparison to that. This plan has to be good, because God is good. He doesn't want us to hurt. I know that. God doesn't like to see us in pain, to cry, to have our hearts broken.
On another note. I find it hard just thinking of the reality of Samuel. I know Jeff has looked into some burial/funeral stuff. It is really difficult to think about. I really just have to take it one day at a time, otherwise it is too overwhelming. I almost feel like I am a ticking bomb-wondering if this is going to be his last kick. I know I have to stop thinking about it-it makes me go mad. Last night, I just lay in bed thinking about the ultrasound and hearing the devastating news. Replaying it over and over again. I have got to stop this. But when i do think this way, I am reminded that this is for God's glory. I think of the story of the blind man being healed. Followers of Jesus asked if this was because of a sin committed by his family. Jesus replied that indeed it was not, but for the glory of God. Let me not forget that. I also have not given up hope-hope for a miracle. God is big and he can give Samuel a brain. I know that even though he is capable, it doesn't mean that is his plan. And that is ok, but I think of a huge miracle happening. I wouldn't be angry at God if it didn't. Thank goodness He knows what He is doing. He did create the universe, I guess I can trust him with this little thing in comparison to that. This plan has to be good, because God is good. He doesn't want us to hurt. I know that. God doesn't like to see us in pain, to cry, to have our hearts broken.
Saturday, August 2, 2008
A better day.
I have to admit that initially today was pretty crappy. It is so hard on a marriage when there are so many stressors. I find Jeff and I fight a lot more now. I know it is because we are both so stressed. Please pray for us through this journey...which I know you all are.
My parents came today-yippee!! I am so glad they are here. Dawson is especially glad. He already wants to play golf with papal and do everything with grandma. I know this week is going to be such a blessing to all of us. I can't tell them how much we appreciate them taking a week out of the year to come. Me, my mom, and Dawson are going swimming tomorrow-that is going to so fun. Jeff and my dad are going to the golf tournament-at least we will be cool in the water.
On another note. I want Samuel to be real to everyone else, as real as he is to us. Please don't feel uncomfortable asking about him or just talking about him. I love talking about him. Also, if anyone ever has any questions, I am more than willing to talk about it. So, don't hestitate. If I don't want to talk about the situation, I will let you know. Anyway, Samuel is such a kicker. Not nearly as much as Dawson was, but still makes me jump he kicks so hard sometimes. My placenta is on the front, which is probably why I don't feel him kick as much as I did with Dawson. His active times are at night (of course when I am going to bed) and in the morning "good morning mom". Dawson has been so sweet lately. He loves to pull up my shirt and kiss baby Samuel. He says "Samuel my brother". Sometimes, he does it at awkward times...we are working on that :). Not much else. Just trying to keep relying on God and keep the faith.
My parents came today-yippee!! I am so glad they are here. Dawson is especially glad. He already wants to play golf with papal and do everything with grandma. I know this week is going to be such a blessing to all of us. I can't tell them how much we appreciate them taking a week out of the year to come. Me, my mom, and Dawson are going swimming tomorrow-that is going to so fun. Jeff and my dad are going to the golf tournament-at least we will be cool in the water.
On another note. I want Samuel to be real to everyone else, as real as he is to us. Please don't feel uncomfortable asking about him or just talking about him. I love talking about him. Also, if anyone ever has any questions, I am more than willing to talk about it. So, don't hestitate. If I don't want to talk about the situation, I will let you know. Anyway, Samuel is such a kicker. Not nearly as much as Dawson was, but still makes me jump he kicks so hard sometimes. My placenta is on the front, which is probably why I don't feel him kick as much as I did with Dawson. His active times are at night (of course when I am going to bed) and in the morning "good morning mom". Dawson has been so sweet lately. He loves to pull up my shirt and kiss baby Samuel. He says "Samuel my brother". Sometimes, he does it at awkward times...we are working on that :). Not much else. Just trying to keep relying on God and keep the faith.
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