Thoughts 3/9/10
It smells like spring it sounds like spring and I have broken out the flip flops. I am not a person who really dislikes winter. In fact, I really like winter. I don’t mind bundling up and I love the smell of the snow and making show angels. I love white Christmases and drinking hot cocoa after winter walks. But I love spring too. Rolling down the car windows and putting the heavy coat in the closet. I love opening all the doors and windows in the house and breathing in the earthy spring air while the house seems to sigh like you just took off its girdle.
I couldn’t help but think on my way to work as I contemplated how what seems like just a few moments ago I was thinking about how peaceful the world rested underneath its blanket of snow, that winter is a lot like being pregnant. The earth is waiting to give birth again. Winter can have its swollen feet and achy back moments but overall it is still wonderful. It’s a promise, just like being pregnant is a promise. All the uncomfortable stuff is so easy to tolerate because at the end you get to hold a new creation, an incarnation of love. A baby all soft and smelly.
For me, that promise feels so veiled right now. I believe that God is going to do something…I just need lots of help with my unbelief some days. I think sometimes it is harder for me that David in this regard. Though I want so much to have faith that can move mountains, I am so easily pulled into feeling like this winter has been a waste. I cling to the promise that nothing, when handed over to God, is wasted. I watch my feet get puffier, my belly get bigger and my bathroom breaks get more frequent, and I am haunted by doubt. So each day contain deliberate efforts to put my faith in what I know is the truth. As our friend Dan said Sunday, doctors know facts but they don’t know the truth. All that effort is sometimes really exhausting. I wish could take a vacation from this whole think and come back in a week, refreshed and ready to fight the good fight. But folks that’s just not the way it works.
“Lord help me put my faith in truth and not in facts because today I am tempted so to despair. Change my heart to be a heart that is near to yours, because the nearer I am too you, the more I can trust in your love. Forgive me for trusting facts more than you. I believe Lord you can, and you will do miraculous things in the life of my family.”
Monday, August 30, 2010
Sunday, August 29, 2010
ready for more bad news
Update 3/8/10
Phew…David and I met with our genetics counselor, had a follow up ultrasound and met with our doctor today. We got the results from the micro array and it was normal. What that means is that so far as they can tell, they have no idea what is causing the issues. These results still don’t rule out a recessive trait disorder but don’t rule it in either. The counselor gave us a preview of what the doctor will tell us on Friday. The doctor we are seeing on Friday is a geneticist and a specialist on brain abnormalities. His view of the MRI noted that the ventricles and the midline structures are concerning. They cannot visualize either. She told us that this is a very rare case and it makes it hard to predict any kind of prognosis but the doctor will likely tell us Gideon’s chances of survival outside of the womb and even inside the womb are very small.
The doctors and university hospital had a panel discussion regarding our case last week. Our Doctor talked to us some about this and what it means for our labor and delivery. Lots of questions were raised about the value of using fetal monitoring. Are we willing to make future pregnancies high risk to save a baby whose chances of surviving are so small?
Our doctor really won us over today. I respected her frankness and her concern about my body and the future of my health and our family. She was open about our choices and dint' try to talk us into or out of anything.
We were blessed to have been prepared in some ways for the news of today. We have to send huge thank yous to the Hansen family. First to pastor Andy who reminded us that this time will never be wasted time. If we turn our brokenness over to the Lord he will not let it come back empty. And thank you to Pete who did not hesitate to share what God had pressed upon his heart to tell me. “trust in the Lord with all your heart and lean not onto your own understanding” a proverb that when broken down in my life right now means as Pete reminded me to trust God more than I trust the doctors and my understanding our situation. David and I both found ourselves again in 1st john. Specifically the first chapter that reminds us that greater is He that is in us that is in the world.
Phew…David and I met with our genetics counselor, had a follow up ultrasound and met with our doctor today. We got the results from the micro array and it was normal. What that means is that so far as they can tell, they have no idea what is causing the issues. These results still don’t rule out a recessive trait disorder but don’t rule it in either. The counselor gave us a preview of what the doctor will tell us on Friday. The doctor we are seeing on Friday is a geneticist and a specialist on brain abnormalities. His view of the MRI noted that the ventricles and the midline structures are concerning. They cannot visualize either. She told us that this is a very rare case and it makes it hard to predict any kind of prognosis but the doctor will likely tell us Gideon’s chances of survival outside of the womb and even inside the womb are very small.
The doctors and university hospital had a panel discussion regarding our case last week. Our Doctor talked to us some about this and what it means for our labor and delivery. Lots of questions were raised about the value of using fetal monitoring. Are we willing to make future pregnancies high risk to save a baby whose chances of surviving are so small?
Our doctor really won us over today. I respected her frankness and her concern about my body and the future of my health and our family. She was open about our choices and dint' try to talk us into or out of anything.
We were blessed to have been prepared in some ways for the news of today. We have to send huge thank yous to the Hansen family. First to pastor Andy who reminded us that this time will never be wasted time. If we turn our brokenness over to the Lord he will not let it come back empty. And thank you to Pete who did not hesitate to share what God had pressed upon his heart to tell me. “trust in the Lord with all your heart and lean not onto your own understanding” a proverb that when broken down in my life right now means as Pete reminded me to trust God more than I trust the doctors and my understanding our situation. David and I both found ourselves again in 1st john. Specifically the first chapter that reminds us that greater is He that is in us that is in the world.
Saturday, August 28, 2010
the story of a dinky kid
Thoughts 2.27.10
I re-read judges last night. Gideon was the dinkiest kid in the dinkiest tribe called to lead and army outnumbered by some 10,000 midianties. What does God do? First he sends like 20,000 guys home. And as if being outnumbered 3 to 1 isn’t bad enough he dismisses more of Gideon’s army. His reason? So that no one will be able to dismiss that it was His power that lead the Israelites to victory. So I pray, God, prepare our hearts for victory we cannot imagine.
I won’t lie and say I am honkey dorey on this one. I’ve cried more tears in the past few days then I have in a long time. Bad news always seems to knock me on my rear. I grieve and experience hopelessness and sadness that is palpable. But I have learned God does not do good things for me because of who I am but because of who He is and who He is does not waiver. Thank you my dear friend Sara of reminding me that none of us deserve miracles but God will fill our lives with them because of who He is, not what we’ve done.
I re-read judges last night. Gideon was the dinkiest kid in the dinkiest tribe called to lead and army outnumbered by some 10,000 midianties. What does God do? First he sends like 20,000 guys home. And as if being outnumbered 3 to 1 isn’t bad enough he dismisses more of Gideon’s army. His reason? So that no one will be able to dismiss that it was His power that lead the Israelites to victory. So I pray, God, prepare our hearts for victory we cannot imagine.
I won’t lie and say I am honkey dorey on this one. I’ve cried more tears in the past few days then I have in a long time. Bad news always seems to knock me on my rear. I grieve and experience hopelessness and sadness that is palpable. But I have learned God does not do good things for me because of who I am but because of who He is and who He is does not waiver. Thank you my dear friend Sara of reminding me that none of us deserve miracles but God will fill our lives with them because of who He is, not what we’ve done.
Friday, August 27, 2010
off the cuff exegesis
Update 2.26.10
Gideon had and echocardiogram today. His heart looks good. The pediatric cardiologist said he couldn’t find anything major wrong and that he has no recommendations. It was nice to have good news for once. It was a wonderful three hours.
Our genetic counselor called later that day as we were driving home. I had a feeling when she suggested we pull over it wasn’t going to be good. She requested a specialist to look at the MRI. Whenever she uses the words “very concerning” it’s just not good. The specialist is going to meet with us on March 12 at 12:30 pm. Small blessings, a Friday my day off. She wanted us not to get blindsided when we went to see him. She said that his prognosis is likely to be worse than the initial prognosis given to us in January. Worse? Seriously how could it get worse? She said that specialist noted that the brain structures are not where they are supposed to be and the specialist predicts we may have serious problems even early on in Gideon’s life.
Only a few days earlier David and I read the same passage from 1st John. He requested for me to read out loud when I did my reading and gave an interested humph when I finished he confessed he had just read that same passage. Here it is.
1 John 4
1Dear friends, do not believe every spirit, but test the spirits to see whether they are from God, because many false prophets have gone out into the world. 2This is how you can recognize the Spirit of God: Every spirit that acknowledges that Jesus Christ has come in the flesh is from God, 3but every spirit that does not acknowledge Jesus is not from God. This is the spirit of the antichrist, which you have heard is coming and even now is already in the world.
4You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world. 5They are from the world and therefore speak from the viewpoint of the world, and the world listens to them. 6We are from God, and whoever knows God listens to us; but whoever is not from God does not listen to us. This is how we recognize the Spirit of truth and the spirit of falsehood.
Though we are still not sure what God was trying to tell us, the verse that stood out to us is verse four. Greater is the one who is in you than the one who is in the world. I hope I am not taking this out of context on my off the cuff exegesis here, but it is a reminder that however accurate the doctors diagnosis is, greater is God, who is right there with Gideon this moment in my womb that any thing that is in the world.
Though to some it may seem naive, I will continue to cling to my hope that God will make Gideon exactly who he is supposed to be. He will prepares us and give us everything we need to be exactly the parents we need to be if we will turn to Him and trust His work in our lives instead of the words of a world who does not know Him.
Gideon had and echocardiogram today. His heart looks good. The pediatric cardiologist said he couldn’t find anything major wrong and that he has no recommendations. It was nice to have good news for once. It was a wonderful three hours.
Our genetic counselor called later that day as we were driving home. I had a feeling when she suggested we pull over it wasn’t going to be good. She requested a specialist to look at the MRI. Whenever she uses the words “very concerning” it’s just not good. The specialist is going to meet with us on March 12 at 12:30 pm. Small blessings, a Friday my day off. She wanted us not to get blindsided when we went to see him. She said that his prognosis is likely to be worse than the initial prognosis given to us in January. Worse? Seriously how could it get worse? She said that specialist noted that the brain structures are not where they are supposed to be and the specialist predicts we may have serious problems even early on in Gideon’s life.
Only a few days earlier David and I read the same passage from 1st John. He requested for me to read out loud when I did my reading and gave an interested humph when I finished he confessed he had just read that same passage. Here it is.
1 John 4
1Dear friends, do not believe every spirit, but test the spirits to see whether they are from God, because many false prophets have gone out into the world. 2This is how you can recognize the Spirit of God: Every spirit that acknowledges that Jesus Christ has come in the flesh is from God, 3but every spirit that does not acknowledge Jesus is not from God. This is the spirit of the antichrist, which you have heard is coming and even now is already in the world.
4You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world. 5They are from the world and therefore speak from the viewpoint of the world, and the world listens to them. 6We are from God, and whoever knows God listens to us; but whoever is not from God does not listen to us. This is how we recognize the Spirit of truth and the spirit of falsehood.
Though we are still not sure what God was trying to tell us, the verse that stood out to us is verse four. Greater is the one who is in you than the one who is in the world. I hope I am not taking this out of context on my off the cuff exegesis here, but it is a reminder that however accurate the doctors diagnosis is, greater is God, who is right there with Gideon this moment in my womb that any thing that is in the world.
Though to some it may seem naive, I will continue to cling to my hope that God will make Gideon exactly who he is supposed to be. He will prepares us and give us everything we need to be exactly the parents we need to be if we will turn to Him and trust His work in our lives instead of the words of a world who does not know Him.
2.15.10
Romans 8:27-29 says “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
This is a verse that I am really clinging to today. We continue to believe and pray that God can heal Gideon. That he will be whole and sound physically and mentally. What I have been grappling a lot with lately is will God heal Gideon. I know that God’s love for David, Gideon and I is profound and limitless and that He longs to do great things for His children. I know that He is more than able to heal, right down to the chromosomes. I have also been given a vision for Gideon’s life. That he will do great things for the Lord.
But what if the way that Gideon ministers to others is not through his healing but through how we deal with his not being healed? What if God’s plan for Gideon isn’t that is wonders are shown through healing, but through his comfort, peace, hope and joy in his people who have no logical reason to have peace and joy? The great comfort to me here is that even if God chooses not to heal Gideon, even if he is profoundly mentally retarded, God will supply all of our needs according to His glorious riches. And through this the world will know God is love, that He truly is the greatest comforter. At the same time, only through my families and my pain will this later witness be accomplished. And the selfish streak in me really thinks that sucks. I don’t want to be a martyr. I don’t want to have to set an example of how to love the Lord even when things are tough because that means things have to be tough, and this is a tough as it has ever been and it might get worse from here.
And I remember that nothing I will suffer, no pain I will have to endure compares to Christ’s suffering on the cross. When God could have chosen to end Christ’s suffering he remained silent. And when my selfish streak rears its ugly head this is what I must cling to. It is because of that suffering that I can cling to the hope that my God is the great comforter. That he fully understands and cares about my pain and desires to draw me closer to him through it all. That though I walk through the valley of shadow (and it has been awful dark these past few weeks) his rod and staff will comfort me.
This is a verse that I am really clinging to today. We continue to believe and pray that God can heal Gideon. That he will be whole and sound physically and mentally. What I have been grappling a lot with lately is will God heal Gideon. I know that God’s love for David, Gideon and I is profound and limitless and that He longs to do great things for His children. I know that He is more than able to heal, right down to the chromosomes. I have also been given a vision for Gideon’s life. That he will do great things for the Lord.
But what if the way that Gideon ministers to others is not through his healing but through how we deal with his not being healed? What if God’s plan for Gideon isn’t that is wonders are shown through healing, but through his comfort, peace, hope and joy in his people who have no logical reason to have peace and joy? The great comfort to me here is that even if God chooses not to heal Gideon, even if he is profoundly mentally retarded, God will supply all of our needs according to His glorious riches. And through this the world will know God is love, that He truly is the greatest comforter. At the same time, only through my families and my pain will this later witness be accomplished. And the selfish streak in me really thinks that sucks. I don’t want to be a martyr. I don’t want to have to set an example of how to love the Lord even when things are tough because that means things have to be tough, and this is a tough as it has ever been and it might get worse from here.
And I remember that nothing I will suffer, no pain I will have to endure compares to Christ’s suffering on the cross. When God could have chosen to end Christ’s suffering he remained silent. And when my selfish streak rears its ugly head this is what I must cling to. It is because of that suffering that I can cling to the hope that my God is the great comforter. That he fully understands and cares about my pain and desires to draw me closer to him through it all. That though I walk through the valley of shadow (and it has been awful dark these past few weeks) his rod and staff will comfort me.
Thursday, August 26, 2010
Thoughts 2.10.10
Thoughts 2.10.10
To say that God will work things out is taking a lot of faith right now. I know that God can do miracles. It’s that God will do something in this situation. It’s a lot easier to believe in miracles in others peoples lives. I don’t sense right not that God s is going to make things all better in this one. I have hope that He will give us strength we need to face whatever comes.
I remember as child telling my mom “I hate you right now”. I remember very clearly knowing that I didn’t’ really hate my mom, that in a little while when I calmed down I loved and trusted my mom to do what was best for me. So I wouldn’t really hate my mom. I just “hated” her then-in that moment. Yesterday I had those moments with God. I just wanted to scream “I hate you, why are you letting this happen. Why do you hate me, what did I do to deserve this?” but like I could never bring myself to say such a final thing to my mom like I hate you (with out the “right now” addendum) I couldn’t bring myself to say I hate you to God.
That’s not to say I didn’t do some, well, yelling at God yesterday. I am still sulking a little today. List night during a very tear filled ride home from work I wanted to do something destructive. The closest I could come up with, save really going bonkers and breaking my dishes, was to carry all the baby stuff upstairs and throw it in the nursery. Out of sight.
And then I sobbed. Susan Lucci for a daytime Emmy sobbed. I don’t want to be pregnant anymore. I don’t want to deal with this anymore. This is never going to end; it’s never going to get better. I’ll never have my own life again. When other moms are going to high school football games and choir concerns, I am going to be changing a 16 year olds diaper. (Remember id did say daytime Emmy here - I wasn’t kidding about the drama queen bit here).
So at the end of my pity party, what do I do now? What do I do when I am done sitting on my ashes? (That is a reference to Job, not a typo, I promise)
To say that God will work things out is taking a lot of faith right now. I know that God can do miracles. It’s that God will do something in this situation. It’s a lot easier to believe in miracles in others peoples lives. I don’t sense right not that God s is going to make things all better in this one. I have hope that He will give us strength we need to face whatever comes.
I remember as child telling my mom “I hate you right now”. I remember very clearly knowing that I didn’t’ really hate my mom, that in a little while when I calmed down I loved and trusted my mom to do what was best for me. So I wouldn’t really hate my mom. I just “hated” her then-in that moment. Yesterday I had those moments with God. I just wanted to scream “I hate you, why are you letting this happen. Why do you hate me, what did I do to deserve this?” but like I could never bring myself to say such a final thing to my mom like I hate you (with out the “right now” addendum) I couldn’t bring myself to say I hate you to God.
That’s not to say I didn’t do some, well, yelling at God yesterday. I am still sulking a little today. List night during a very tear filled ride home from work I wanted to do something destructive. The closest I could come up with, save really going bonkers and breaking my dishes, was to carry all the baby stuff upstairs and throw it in the nursery. Out of sight.
And then I sobbed. Susan Lucci for a daytime Emmy sobbed. I don’t want to be pregnant anymore. I don’t want to deal with this anymore. This is never going to end; it’s never going to get better. I’ll never have my own life again. When other moms are going to high school football games and choir concerns, I am going to be changing a 16 year olds diaper. (Remember id did say daytime Emmy here - I wasn’t kidding about the drama queen bit here).
So at the end of my pity party, what do I do now? What do I do when I am done sitting on my ashes? (That is a reference to Job, not a typo, I promise)
Wednesday, August 25, 2010
2.10.10
Posted to face book as Update 2.9.10
Yesterday we had an appointment with the Doctor at university hospital and a follow up ultrasound. We found that in good weather it really does only take and hour to get there. So after sitting around for a while we had our follow up ultrasound and meeting with our new OB. The ultrasound continues to confirm the micochepaly. His had as grown -but not nearly as much as it needs to. His head is measuring at 21 weeks and the rest of him 26 weeks. The good news- the rest of him seems healthy. The ultrasound also continues to show the micorgnatia-the facial abnormality. There is another MRI on Monday, though I am not sure why. We have lots of upcoming appointments. My doctor in town on the 12th, the MIR on the fifteenth and a fetal echo on the 26th. Then another follow up on March 8th. On the 8th we will also meet with our genetic counselor to kind of figure out where were are at and make sure all our ducks are in row I guess.
David and I felt kind of steamrolled by the doctor at university hospital. Not that she wasn’t knowledgeable or that she didn’t care. More so that she didn’t’ really get what were we asking. David and I understand that this is a high risk pregnancy and that we need university hospital’s expertise and knowledge. We have things in mind or our labor and every because of the research we are doing but we understand that because this is unique situations we are going to have compromise. We really just want to have conversations about how to bridge the gap. David said it well last night. “The track record of obstetrics in the country isn’t good. Normal doctors, normal procedures and hospital don’t have good reputations for really taking care of women and babies. Tell me how you are abnormal. How are you going to be different to make my wife and son safer”?
How do you say to a doctor with out sounding completely belligerent, is what you are doing really what is best for us or just what is convenient for you? What it boils down to, or at least what it feels like, it’s that though this may be routine for the doctors it is not routine to us. This is not just another baby, another delivery. He is our son.
So I cry out to God who is the ultimate physician. God who not only cares deeply for Gideon but for David and I. who understands what it means to watch his child suffer, who isn’t in a hurry to see the next patients and who works beyond tests or prognosis. Who can, and will do amazing things.
Yesterday we had an appointment with the Doctor at university hospital and a follow up ultrasound. We found that in good weather it really does only take and hour to get there. So after sitting around for a while we had our follow up ultrasound and meeting with our new OB. The ultrasound continues to confirm the micochepaly. His had as grown -but not nearly as much as it needs to. His head is measuring at 21 weeks and the rest of him 26 weeks. The good news- the rest of him seems healthy. The ultrasound also continues to show the micorgnatia-the facial abnormality. There is another MRI on Monday, though I am not sure why. We have lots of upcoming appointments. My doctor in town on the 12th, the MIR on the fifteenth and a fetal echo on the 26th. Then another follow up on March 8th. On the 8th we will also meet with our genetic counselor to kind of figure out where were are at and make sure all our ducks are in row I guess.
David and I felt kind of steamrolled by the doctor at university hospital. Not that she wasn’t knowledgeable or that she didn’t care. More so that she didn’t’ really get what were we asking. David and I understand that this is a high risk pregnancy and that we need university hospital’s expertise and knowledge. We have things in mind or our labor and every because of the research we are doing but we understand that because this is unique situations we are going to have compromise. We really just want to have conversations about how to bridge the gap. David said it well last night. “The track record of obstetrics in the country isn’t good. Normal doctors, normal procedures and hospital don’t have good reputations for really taking care of women and babies. Tell me how you are abnormal. How are you going to be different to make my wife and son safer”?
How do you say to a doctor with out sounding completely belligerent, is what you are doing really what is best for us or just what is convenient for you? What it boils down to, or at least what it feels like, it’s that though this may be routine for the doctors it is not routine to us. This is not just another baby, another delivery. He is our son.
So I cry out to God who is the ultimate physician. God who not only cares deeply for Gideon but for David and I. who understands what it means to watch his child suffer, who isn’t in a hurry to see the next patients and who works beyond tests or prognosis. Who can, and will do amazing things.
Tuesday, August 24, 2010
Feb 7, 2010
Initially posted to face book Saturday, February 6, 2010 at 1:46 pm
Sorry it’s been such a while since and update! To be honest, not much has been going on. We have an appointment on Monday with the doctor from University hospital and another fetal MRI scheduled for the 15th of February. This is to try to get a more accurate picture out the artifacts (or stuff on the film that wasn’t baby).
It seems a little strange to be meeting my OB at 27 weeks but we’ll role with the punches I guess. Some news on the testing front. This was a little complicate for me so I am going to do my best to explain it. I had a blood test shortly before I went up to University Hospital in January called a triple screen. This test looks for an enzyme in my blood that may indicate that they baby’s spinal cord has been exposed to the amniotic fluid. This test was positive and the one that my OB in town referred to as indicating he may have spinal cord issues in my last note.
The amniocentesis showed was also positive for an enzyme with a super long crazy name abbreviated ACHE. So after that test comes up positive they run another test to rule out a false positive cause by fetal blood. Nobody seems to be panicking about fetal blood; it could have been introduced by the needle from the amino. If that is positive then the test has to be rule inconclusive. That test was positive; therefore the only way they can tell if the spinal cord has been exposed is to look at the MRI and the ultrasound. As of yet, the spine looks fine on both of those tests.
I learned recently that most prenatal tests are far more likely to have false positives’ (telling you something is wrong when it isn’t) then false negatives (missing something that is wrong when it really is there). What this means is take scary results with a grain of sand and it is ok to be reassured by comforting results. I’m not getting too attached to any test at this point.
Emotionally I think I’ve just been physically sick over the past week it’s been a nice distraction. Gotta love cold season. I continue to be encouraged and uplifted by all your thoughts and prayers and have even getting some support from some unexpected places. The nursery is on its way to getting done, thanks to my totally awesome sister Lori Jo Dyke we are going to get a tree painted any day now. My family came down last week and helped out with some things around the house. I really enjoyed spending time with my cousin Liz. Not only is she a blast to be with, but Liz reminds me that God is good. As a cancer survivor, who defied some doctors herself, she reminds me that things will work out in God’s plan and that I can trust that plan.
I have had some things on my mind that I’m not sure if I’m brave enough to share. Truthfully I am past it for now; the stages of grief tend to go that way, in ebbs and waves. Next time it comes along maybe I’ll be better ready to talk about it.
Sorry it’s been such a while since and update! To be honest, not much has been going on. We have an appointment on Monday with the doctor from University hospital and another fetal MRI scheduled for the 15th of February. This is to try to get a more accurate picture out the artifacts (or stuff on the film that wasn’t baby).
It seems a little strange to be meeting my OB at 27 weeks but we’ll role with the punches I guess. Some news on the testing front. This was a little complicate for me so I am going to do my best to explain it. I had a blood test shortly before I went up to University Hospital in January called a triple screen. This test looks for an enzyme in my blood that may indicate that they baby’s spinal cord has been exposed to the amniotic fluid. This test was positive and the one that my OB in town referred to as indicating he may have spinal cord issues in my last note.
The amniocentesis showed was also positive for an enzyme with a super long crazy name abbreviated ACHE. So after that test comes up positive they run another test to rule out a false positive cause by fetal blood. Nobody seems to be panicking about fetal blood; it could have been introduced by the needle from the amino. If that is positive then the test has to be rule inconclusive. That test was positive; therefore the only way they can tell if the spinal cord has been exposed is to look at the MRI and the ultrasound. As of yet, the spine looks fine on both of those tests.
I learned recently that most prenatal tests are far more likely to have false positives’ (telling you something is wrong when it isn’t) then false negatives (missing something that is wrong when it really is there). What this means is take scary results with a grain of sand and it is ok to be reassured by comforting results. I’m not getting too attached to any test at this point.
Emotionally I think I’ve just been physically sick over the past week it’s been a nice distraction. Gotta love cold season. I continue to be encouraged and uplifted by all your thoughts and prayers and have even getting some support from some unexpected places. The nursery is on its way to getting done, thanks to my totally awesome sister Lori Jo Dyke we are going to get a tree painted any day now. My family came down last week and helped out with some things around the house. I really enjoyed spending time with my cousin Liz. Not only is she a blast to be with, but Liz reminds me that God is good. As a cancer survivor, who defied some doctors herself, she reminds me that things will work out in God’s plan and that I can trust that plan.
I have had some things on my mind that I’m not sure if I’m brave enough to share. Truthfully I am past it for now; the stages of grief tend to go that way, in ebbs and waves. Next time it comes along maybe I’ll be better ready to talk about it.
Monday, August 23, 2010
the plan...
Phew! It has been a while since I posted. I am a bad blogger, but I don't have the energy to feel guilty about that...at least that is what I am telling myself. I have to confess I am not sure how to proceed. I have a lot of posts from face book to get any new people up to speed but I have really been using that as in excuse to not stay up to date. So here’s the plan, now that I have a computer -for how long I don't know, it’s on its last leg-over the next few days I am going to get those old posts up. After that I am committing to an update every week...or so...
Monday, August 9, 2010
one of many trips to work
initially posted to facebook on Saturday, January 23, 2010 at 4:03pm
Today at my doctor’s appointment we gained more information. My blood test showed that there are possible neural tube deficits. What that means yet, I don’t know. I am going to university hospital on the 8th of February and will talk more with Doctor there to figure out what is next.
Sometimes my car just drives itself to work on its own. That was good thing this morning because I was lost in thought. I continue to pray for Gideon and that he will be healed, that he will be healthy. I pray that he won’t have to suffer with health problems or at the words of those who have less tolerance for little boys who are different. I was reminded this morning, as I have been though this process, how God, my heavenly father watched his son suffer. Suffer as those he came to save turned their backs on him, suffered on the cross. And God chose to let that suffering happen because he wanted to wash me of my sins, to free me of my chains. I am reminded that that my creator completely understands what I am going through right now.
More so, he has given me a glimpse of his heart. Though I can never truly understand the sacrifice he made, letting His son suffer and die on a cross, I am made more fully aware of his love for me as I am faced with what kind of suffering my son may face. I realize all the much greater suffering did Christ do for us. And I am comforted by my father’s love for me.
Today at my doctor’s appointment we gained more information. My blood test showed that there are possible neural tube deficits. What that means yet, I don’t know. I am going to university hospital on the 8th of February and will talk more with Doctor there to figure out what is next.
Sometimes my car just drives itself to work on its own. That was good thing this morning because I was lost in thought. I continue to pray for Gideon and that he will be healed, that he will be healthy. I pray that he won’t have to suffer with health problems or at the words of those who have less tolerance for little boys who are different. I was reminded this morning, as I have been though this process, how God, my heavenly father watched his son suffer. Suffer as those he came to save turned their backs on him, suffered on the cross. And God chose to let that suffering happen because he wanted to wash me of my sins, to free me of my chains. I am reminded that that my creator completely understands what I am going through right now.
More so, he has given me a glimpse of his heart. Though I can never truly understand the sacrifice he made, letting His son suffer and die on a cross, I am made more fully aware of his love for me as I am faced with what kind of suffering my son may face. I realize all the much greater suffering did Christ do for us. And I am comforted by my father’s love for me.
Friday, August 6, 2010
Saturday, January 23, 2010 at 4:01pm
Yesterday I caught myself trying to talk myself into worrying. I was thinking, “this is pretty serious business, a lot could go wrong here. You are way to calm. You should really be freaking out more. Don’t you remember your baby could be born with serious disabilities? Don’t you remember how bad this could be? What kind of mom are you not thinking more about this?”
What is it about worry that is so seductive? I have been blessed with peace that I don’t understand and yet I try to talk myself in to worry? My very short commute has become my thinking time and as I drove past the dormant corn fields I began to realize that worry creates the illusion that I am doing something. Peace involves surrender, worry gives me the illusion that by doing something I have control of something. Like a strange parasite, worry tricks me into feeding the wrong thing and my soul shrivels while I blissful, ignorantly think that by worrying I am controlling something. But I am not in control. God is. He has told me that in ways solid and steady, yet the enemy likes to fog the water, tricking me into thinking that I can control something by worrying about it. But Jesus said “who by worrying adds a day to his life”. So I will not worry, a least not today…
What is it about worry that is so seductive? I have been blessed with peace that I don’t understand and yet I try to talk myself in to worry? My very short commute has become my thinking time and as I drove past the dormant corn fields I began to realize that worry creates the illusion that I am doing something. Peace involves surrender, worry gives me the illusion that by doing something I have control of something. Like a strange parasite, worry tricks me into feeding the wrong thing and my soul shrivels while I blissful, ignorantly think that by worrying I am controlling something. But I am not in control. God is. He has told me that in ways solid and steady, yet the enemy likes to fog the water, tricking me into thinking that I can control something by worrying about it. But Jesus said “who by worrying adds a day to his life”. So I will not worry, a least not today…
angus is my dog
Saturday, January 16, 2010 at 10:34am
First I want to take the time to say thank you. My Internet time is very limited (and even on my phone my thumbs can only do so much) so I have not had a chance to thank you all individually for your encouragement, prayers and love! Hopefully I will have time to do that today. Your support has been huge for David and me. It has given us strength and hope.
Now for some news, news, news…we found out the results of the amniocentesis last week. Gideon does not have a chromosome disorder. This is not necessarily as surprise as the doctors were not very suspicious of this. Overall this is good news because children with chromosome disorders tend to have more severe health problems. They are looking into my insurance to run another test that looks at even smaller bits of genes. This test looks to see if there are deletions or duplicates of genes to small for the regular test to show.
Because my OB didn’t have the test results she couldn’t know the reasons they are very suspicious what is going on here is a genetic things. Later on Friday Bryanna explained that because his lack of development is “asymmetrical” meaning just his head is small and because of the facial deformities it seems unlikely that a viral issues caused his microcephaly. This news makes the future of our family uncertain but I’m putting that on the back burner for now. Or, at least I am trying to…
Gideon had a fetal MRI on Wednesday. He didn’t seem to mind. For me, not so much fun. More on that later. The MRI had some “artifacts” which means things on the film that are not baby so they want to do another one in about a month. Bryanna, our genetics counselor gave me a call yesterday to let me know the tentative findings of the MRI. The MRI confirmed the microcephaly. (No big surprises there). It identified that; at this point the ventricles (space the brain) appear to be normal. Good thing. (I am always asking Bryanna that, “so is that good/bad thing or what?” They also suspect a Chiari malformation. This means that the back of his head isn’t formed right and parts of his brain are getting squished. (That’s a technical term: squished). This, as far as we know is not good or bad news. Chiari malformations are common in children with spinal bifida and other spinal problems (which he does not appear to have) and is often asymptomatic. That means is that they usually find it while looking for something else. It can cause dizziness, nausea or balance issues that can be helped with surgery.
Micrognathia. There is a fancy pantsy medical name for small chin. The MRI did not show evidence of this disorder. This is good new, if it is correct. At this point I am too emotionally vulnerable to take anything too good and run with it but I am going to pray the MRI is telling us the truth. If this is the case Gideon is less likely to have trouble breathing and eating and should be able to breast-feed normally! Also Bryanna told me that they will not do a cesarean unless absolutely necessary teaching me to be careful what you assume and then get freaked out about…she said they really try to avoid them, especially for first pregnancies.
I will go and see the doctor at university hospital sometime the week of February 8th. I will probably schedule that appointment sometime next week. At that time she will do another ultrasound to check in. I will also have to have another MRI. While Gideon has the MRI. Hopefully this one will not be so long. I was in there four an hour, and then had a fifteen-minute break then another hour. I reminded Gideon several times during the process how much his mother loved him. I did well with the small space but for some reason it really hurt my back. I did well until the end of the test when David gently had to remind me that they Doctors were not, as I was beginning to suspect, NEVER going to let me out.
With all that news it is probably easy to see why this week was a bit of an emotional roller coaster. OK so a lot of a roller coaster. I have had many moments of hope and strength. Though I would like to the credit for this faith, I know I can’t. In my own strength I am a wreck. I am full of doubt, anxiety, and fear and I curse the darkness. This has to be God because it is not me. My pride often temps me to say, “Oh, look how good I am doing” but then the Spirit gently reminds me that it is only in His strength I am made strong!
I struggle to know what to do with my grief, and even what I am allowed to grieve for. There are times when I am overwhelmed by grief. Out of control, runaway train, get punched in the face grief. I think of all of the things I have lost and it becomes too easy to focus on what I might not have… holding him those first moments, breastfeeding, sending him off to college. But how can I even know what Gideon’s life will be? Is any parent really guaranteed all of those “normal” things? Our lives and the lives of our children are so very fragile. I am learning early on to be thankful for the moments because God’s promise wasn’t that tragedies and road bumps are not to come. His promise is that He will be with us and give us what we need in all of life’s uncertainties.
At the same time, I know that I must allow my self to grieve, but for what?
(he is a squirrel hunter of great regard in his own head)
First I want to take the time to say thank you. My Internet time is very limited (and even on my phone my thumbs can only do so much) so I have not had a chance to thank you all individually for your encouragement, prayers and love! Hopefully I will have time to do that today. Your support has been huge for David and me. It has given us strength and hope.
Now for some news, news, news…we found out the results of the amniocentesis last week. Gideon does not have a chromosome disorder. This is not necessarily as surprise as the doctors were not very suspicious of this. Overall this is good news because children with chromosome disorders tend to have more severe health problems. They are looking into my insurance to run another test that looks at even smaller bits of genes. This test looks to see if there are deletions or duplicates of genes to small for the regular test to show.
Because my OB didn’t have the test results she couldn’t know the reasons they are very suspicious what is going on here is a genetic things. Later on Friday Bryanna explained that because his lack of development is “asymmetrical” meaning just his head is small and because of the facial deformities it seems unlikely that a viral issues caused his microcephaly. This news makes the future of our family uncertain but I’m putting that on the back burner for now. Or, at least I am trying to…
Gideon had a fetal MRI on Wednesday. He didn’t seem to mind. For me, not so much fun. More on that later. The MRI had some “artifacts” which means things on the film that are not baby so they want to do another one in about a month. Bryanna, our genetics counselor gave me a call yesterday to let me know the tentative findings of the MRI. The MRI confirmed the microcephaly. (No big surprises there). It identified that; at this point the ventricles (space the brain) appear to be normal. Good thing. (I am always asking Bryanna that, “so is that good/bad thing or what?” They also suspect a Chiari malformation. This means that the back of his head isn’t formed right and parts of his brain are getting squished. (That’s a technical term: squished). This, as far as we know is not good or bad news. Chiari malformations are common in children with spinal bifida and other spinal problems (which he does not appear to have) and is often asymptomatic. That means is that they usually find it while looking for something else. It can cause dizziness, nausea or balance issues that can be helped with surgery.
Micrognathia. There is a fancy pantsy medical name for small chin. The MRI did not show evidence of this disorder. This is good new, if it is correct. At this point I am too emotionally vulnerable to take anything too good and run with it but I am going to pray the MRI is telling us the truth. If this is the case Gideon is less likely to have trouble breathing and eating and should be able to breast-feed normally! Also Bryanna told me that they will not do a cesarean unless absolutely necessary teaching me to be careful what you assume and then get freaked out about…she said they really try to avoid them, especially for first pregnancies.
I will go and see the doctor at university hospital sometime the week of February 8th. I will probably schedule that appointment sometime next week. At that time she will do another ultrasound to check in. I will also have to have another MRI. While Gideon has the MRI. Hopefully this one will not be so long. I was in there four an hour, and then had a fifteen-minute break then another hour. I reminded Gideon several times during the process how much his mother loved him. I did well with the small space but for some reason it really hurt my back. I did well until the end of the test when David gently had to remind me that they Doctors were not, as I was beginning to suspect, NEVER going to let me out.
With all that news it is probably easy to see why this week was a bit of an emotional roller coaster. OK so a lot of a roller coaster. I have had many moments of hope and strength. Though I would like to the credit for this faith, I know I can’t. In my own strength I am a wreck. I am full of doubt, anxiety, and fear and I curse the darkness. This has to be God because it is not me. My pride often temps me to say, “Oh, look how good I am doing” but then the Spirit gently reminds me that it is only in His strength I am made strong!
I struggle to know what to do with my grief, and even what I am allowed to grieve for. There are times when I am overwhelmed by grief. Out of control, runaway train, get punched in the face grief. I think of all of the things I have lost and it becomes too easy to focus on what I might not have… holding him those first moments, breastfeeding, sending him off to college. But how can I even know what Gideon’s life will be? Is any parent really guaranteed all of those “normal” things? Our lives and the lives of our children are so very fragile. I am learning early on to be thankful for the moments because God’s promise wasn’t that tragedies and road bumps are not to come. His promise is that He will be with us and give us what we need in all of life’s uncertainties.
At the same time, I know that I must allow my self to grieve, but for what?
So much is going on in my head and in my heart. It flies by so fast that sometimes I think I should keep my journal with me so I can remember it all. He teaches me new lessons everyday. Its quite the crash course in faith and trust. For now though, there is a squirrel outside the door I am going to let Angus pretend he can catch.
Thursday, August 5, 2010
Friday, January 8, 2010 at 12:56pm my first face book post, and the beginning of my journey toward this blog.
Well, today we went to my OB. University hospital had not sent her results yet but we talked about some of our options. It was really encouraging that she is nearly convinced this is not a genetic thing, she was really proactive about making sure we have enough information for the future. What that means is that if she is right, there is a strong possibly that Gideon will someday have a younger brother or sister who is healthy and “normal”. It looks like I might be still able to do most of my visits here in town but just go up to Chicago for follow up tests and ultra sounds.
I’ve decided to keep a sort of online journal. I’ll use the first part for updates about how Gideon is doing. There’s a lot on my mind, and I find sometimes I need to get it out of my head. I’d like to say my motives are not selfish, but in some ways they are. Though this journey I realized I need support, so I thought it would make sense to let you in on more than just the details doctors give us, but on the emotional and spiritual journey my husband and I are embarking on. Like I said, I won’t be offended if you just want to read the first parts and leave my ramblings for those with too much free time.
I have my moments where I am positive and strong. And I have my moments were I just feel paralyzed by fear, sadness and grief. Yesterday was full of both. When we found out about the microcephaly the hospital offered to terminate the pregnancy. I wish I could say that saying no thank you was complete act of compassion and love, but at that point, it was obedience to a sovereign God, because there was, and still sometimes is, a part of me that just wants to give up. It just felt and feels so huge. I cried, we sobbed. Everything was all wrong. I watched the snow fall gently outside the window and felt my dreams crash all around me when the words “very concerning” “eighty percent chance he will be restarted” “will need to deliver at a hospital with a NICU (neonatal intensive care unit)” thudded on the table of the small room me, David, my mom and his dad were stuffed into. And so I spent the ride home in silence, contemplating my loss, wondering how I would ever get out of bed again. And that was my plan, go home, get in bed and just stay there forever.
On the way home God reminded me the words of Job. “naked I came from my mother’s womb, naked I shall return. The Lord gave the Lord takes away. Blessed be the name of the Lord”. And I think God reminded me what a compliment this is. I remember reading once a mother of special needs children talking about how it takes special people to raise special needs children. Though I’ll confess, I’d like to be a little less special.
So I got home and got in bed and intended to stay there. But I couldn’t do it. I realized that giving up just wasn’t a viable option. I can’t give in to despair. It is just not an option. My grandmother had a plaque on her wall that said “the will of God will never lead you where the Grace of God cannot keep you”. when I was little I was like “phew that means there I placed I don’t have to go”. I have realized that what that really means is that God will provide the grace and strength I need, when I need it. Just when I need it, not a moment too soon but not a moment too late…when I think of all of things I wanted for my children I remembered the most important was that they live a life that points others towards God. There is no reason that Gideon, whatever his disabilities can’t do this important thing. It is my own selfishness and narcissism that is angry that my baby wont’ be smart.
I re-read the verses in Job and realized a part I had missed.
“At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship and said: "Naked I came from my mother's womb, and naked I will depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised." So there are my instructions. Worship the Lord.
I hope I can be the mother God wants me to be. I am praying for the strength to accept this with humility and courage but I won’t lie and say I’m there. The Lord has to be my strength because I don’t have it. I was telling David this morning that I am going to have to post scriptures all around the house and say them to myself often. Say them out loud because I falter often, I feel week, tired and scared a lot of the time. I speak what I know is the truth hoping that someday I will be able to fully believe all the words that come out of my mouth.
I read “You are Special” by Max Lucado out loud last night. I want to read it as much as I can because I want me to remember and Gideon to know that God made him and God doesn’t make mistakes.
Your support has meant the world to me and I can’t say how many of you have so fully reinforced what God is revealing to my day by day. Thank you. More updates soon
Well, today we went to my OB. University hospital had not sent her results yet but we talked about some of our options. It was really encouraging that she is nearly convinced this is not a genetic thing, she was really proactive about making sure we have enough information for the future. What that means is that if she is right, there is a strong possibly that Gideon will someday have a younger brother or sister who is healthy and “normal”. It looks like I might be still able to do most of my visits here in town but just go up to Chicago for follow up tests and ultra sounds.
I’ve decided to keep a sort of online journal. I’ll use the first part for updates about how Gideon is doing. There’s a lot on my mind, and I find sometimes I need to get it out of my head. I’d like to say my motives are not selfish, but in some ways they are. Though this journey I realized I need support, so I thought it would make sense to let you in on more than just the details doctors give us, but on the emotional and spiritual journey my husband and I are embarking on. Like I said, I won’t be offended if you just want to read the first parts and leave my ramblings for those with too much free time.
I have my moments where I am positive and strong. And I have my moments were I just feel paralyzed by fear, sadness and grief. Yesterday was full of both. When we found out about the microcephaly the hospital offered to terminate the pregnancy. I wish I could say that saying no thank you was complete act of compassion and love, but at that point, it was obedience to a sovereign God, because there was, and still sometimes is, a part of me that just wants to give up. It just felt and feels so huge. I cried, we sobbed. Everything was all wrong. I watched the snow fall gently outside the window and felt my dreams crash all around me when the words “very concerning” “eighty percent chance he will be restarted” “will need to deliver at a hospital with a NICU (neonatal intensive care unit)” thudded on the table of the small room me, David, my mom and his dad were stuffed into. And so I spent the ride home in silence, contemplating my loss, wondering how I would ever get out of bed again. And that was my plan, go home, get in bed and just stay there forever.
On the way home God reminded me the words of Job. “naked I came from my mother’s womb, naked I shall return. The Lord gave the Lord takes away. Blessed be the name of the Lord”. And I think God reminded me what a compliment this is. I remember reading once a mother of special needs children talking about how it takes special people to raise special needs children. Though I’ll confess, I’d like to be a little less special.
I re-read the verses in Job and realized a part I had missed.
“At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship and said: "Naked I came from my mother's womb, and naked I will depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised." So there are my instructions. Worship the Lord.
I hope I can be the mother God wants me to be. I am praying for the strength to accept this with humility and courage but I won’t lie and say I’m there. The Lord has to be my strength because I don’t have it. I was telling David this morning that I am going to have to post scriptures all around the house and say them to myself often. Say them out loud because I falter often, I feel week, tired and scared a lot of the time. I speak what I know is the truth hoping that someday I will be able to fully believe all the words that come out of my mouth.
I read “You are Special” by Max Lucado out loud last night. I want to read it as much as I can because I want me to remember and Gideon to know that God made him and God doesn’t make mistakes.
Your support has meant the world to me and I can’t say how many of you have so fully reinforced what God is revealing to my day by day. Thank you. More updates soon