Did you catch this on the news last week? This report gives a peek at the MOMS study we were invited to participate in after we learned of Gabe's diagnosis in utero.
While the results are positive, we still feel confident about the decisions we made not to participate in this study based on our family situation, the randomization, and the information we were presented with at the time. However, I am anxiously looking forward to following the stories of children who were able to benefit from the in utero study. I also appreciate the attention that this study has, and will, bring to the issues Gabe will face throughout his life because of Spina Bifida.
If you are a scientifically minded, or maybe a bit geeky like me, you may enjoy reading the abstract.
Showing posts with label Spina Bifida. Show all posts
Showing posts with label Spina Bifida. Show all posts
Thursday, February 17, 2011
Wednesday, October 20, 2010
Spina Bifida Worldwide Day of Prayer
Did you know?
"October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world.
To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.
October 20 is Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side." { For more info }
This weekend as we waited for our hospital discharge instructions, I spent time reading through the extensive notes in our file documenting this pregnancy, delivery, and time in the NICU. I was struck by something specific I read in a note from the high risk specialist to my OB. Tucked in the middle of a letter full of medical jargon was the following, "Patient was counseled regarding termination and refuses based on religious beliefs. She attends XYZ church" {of the crazy people who hope in something brighter than doctor diagnosis.} {On that note: What the heck does the name of my church have to do with my decision? But, that's a whole 'nother soapbox...}
Thinking back I was reminded that even my own doctor threw out the T-word in his first three sentences when explaining our original ultrasound. In fact, I was conditioned to dread my prenatal appointments as they gave repeat opportunity for defending my rationale for carrying my sweet baby to term. The doctors' tone, during my time in each office, was often that of a dreary funeral procession instead of the joyful ballad of new life.
We are so thankful for our joy in hope, patience in affliction, and trust in a perfect plan for our baby boy. We recognize that he was knit together just the way he was intended to be.
This little man, "who will likely have breathing problems, endure multiple surgeries, spend extended time in the hospital, need a feeding tube, have cognitive impairments, never walk, have kidney problems, have no control of his bladder and bowels, worst case...worst case...worst case..." is our own little miracle. We will never venture to imagine our lives without Gabe.
He has already brought our family closer together. Introduced us to an amazing new community of love and support. Encouraged us to lean on our faith. Solidified our relationships with some amazing friends. Brought hundreds together in prayer.
"October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world.
To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.
October 20 is Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side." { For more info }
This weekend as we waited for our hospital discharge instructions, I spent time reading through the extensive notes in our file documenting this pregnancy, delivery, and time in the NICU. I was struck by something specific I read in a note from the high risk specialist to my OB. Tucked in the middle of a letter full of medical jargon was the following, "Patient was counseled regarding termination and refuses based on religious beliefs. She attends XYZ church" {of the crazy people who hope in something brighter than doctor diagnosis.} {On that note: What the heck does the name of my church have to do with my decision? But, that's a whole 'nother soapbox...}
Thinking back I was reminded that even my own doctor threw out the T-word in his first three sentences when explaining our original ultrasound. In fact, I was conditioned to dread my prenatal appointments as they gave repeat opportunity for defending my rationale for carrying my sweet baby to term. The doctors' tone, during my time in each office, was often that of a dreary funeral procession instead of the joyful ballad of new life.
We are so thankful for our joy in hope, patience in affliction, and trust in a perfect plan for our baby boy. We recognize that he was knit together just the way he was intended to be.
This little man, "who will likely have breathing problems, endure multiple surgeries, spend extended time in the hospital, need a feeding tube, have cognitive impairments, never walk, have kidney problems, have no control of his bladder and bowels, worst case...worst case...worst case..." is our own little miracle. We will never venture to imagine our lives without Gabe.
He has already brought our family closer together. Introduced us to an amazing new community of love and support. Encouraged us to lean on our faith. Solidified our relationships with some amazing friends. Brought hundreds together in prayer.
Because of him, and Him, we will join in prayer again today.
For unborn babies.
For kids with spina bifida.
For all children.
Sunday, October 3, 2010
Knocked Down, But Not Out
This week has held its share of ups and downs for our family and our little boy wonder.
Gabe's back showed signs of either an infection or a necrosis at the site of his incision. When the Dr. saw him early in the week he ordered antibiotics to help ward off the infection if that was indeed what was the leaking at the incision was fat that had died and was melting away (by the way I'd love to know how to catch some fat necrosis of my own;).
This week also brought elevated bilirubin levels forcing Gabe to stay in his incubator under phototherapy lights all day. He did okay with this, although having his eyes covered and being on his belly made him more vocal than the nurses were used to him being.
Yesterday was a good day as he was taken off the phototherapy routine and his IV was taken out. We held him on our lap and had good visits with his eyes open.
However during the night his incision opened significantly. It has been determined that the tissue in his back died and therefore the stitches had nothing to hold together anymore. Gabe was taken back into surgery to have his back re-repaired. This is quite a setback as it means his healing is now starting over at day #1.
We knew before this all began that we would have ups and downs and that we would be held through them all, but we are still feeling a bit defeated as each day passes and it becomes more difficult to not have our family of 6 together. Yet, another successful surgery is now behind us and it's time to get back up again...
Gabe's back showed signs of either an infection or a necrosis at the site of his incision. When the Dr. saw him early in the week he ordered antibiotics to help ward off the infection if that was indeed what was the leaking at the incision was fat that had died and was melting away (by the way I'd love to know how to catch some fat necrosis of my own;).
This week also brought elevated bilirubin levels forcing Gabe to stay in his incubator under phototherapy lights all day. He did okay with this, although having his eyes covered and being on his belly made him more vocal than the nurses were used to him being.
Yesterday was a good day as he was taken off the phototherapy routine and his IV was taken out. We held him on our lap and had good visits with his eyes open.
However during the night his incision opened significantly. It has been determined that the tissue in his back died and therefore the stitches had nothing to hold together anymore. Gabe was taken back into surgery to have his back re-repaired. This is quite a setback as it means his healing is now starting over at day #1.
We knew before this all began that we would have ups and downs and that we would be held through them all, but we are still feeling a bit defeated as each day passes and it becomes more difficult to not have our family of 6 together. Yet, another successful surgery is now behind us and it's time to get back up again...
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