God is so good!
The preliminary results of the amniocentesis fish test have come in. This test is for the presence of extra chromosomal 21, 18, 13, & the gender chromosome. This included severe syndromes such as Downs & Edwards.
Well, praise the Lord, the test came back as NORMAL!!! What a blessing & truly an unexpected one with the severity of his heart condition. Any one of these extra chromosomes would have compromised his eligibility to have the necessary surgeries once he's born. We will have the full report by the end of this week, which screens the full spectrum of chromosome abnormalities. But what a step in the right direction!!! After several weeks of hearing bad & worse news with every doctor's visit, this certainly is a blessing!
Thank you again for your many prayers & support. To God be all the glory & praise!
Monday, October 30, 2006
The miracle of life...
Thank you so much for visiting our site! Jordan & I are now 22 weeks pregnant w/our first child - a son! We're so very excited that God would bless us with a child! We did not plan to become parents so soon, but have once again learned that God's timing is absolutely perfect! We couldn't imagine any other route at this point...How exciting! While this is a wonderful time, there is much need for prayer.
We've known for about a month that he has a heart defect, but could not determine at the first two ultrasounds what it was due to the baby's position, contractions, etc. Thankfully, UNC Chapel Hill Hospital is nearby & we were able to get answers two weeks ago. Our little boy has an irreversible heart condition called HLHS (Hypoplastic Left Heart Syndrome). This syndrome is comprised of several heart defects, most notably a severely underdeveloped left ventricle & aorta. Right now, he's fine while in the womb since the whole heart is working together to distribute healthy blood to the entire body & the placenta is providing the oxygen needed to his blood. However, distribution of oxygenated blood to the body is entirely dependent on the left ventricle & aorta after birth, & thus presents a huge problem as his heart will not be able to do this on its own with this condition. Survival after birth is dependent on one or both of two options. This first is a process of 3 open heart surgeries, the first occurring during the first week of his life & the last at two years to fully reconstruct the structure & flow of the heart. The other option is a full heart transplant in order to survive once he's born. Both options are equally viable & risky. Simply put, he cannot survive w/the heart he currently has. There is no specific known cause for this condition, simply something that can develop in some babies. Thankfully we were able to find out about this now, so that plans & surgeries can be put into place once he's here. Otherwise, he would not last one week after birth if left untreated. The form of HLHS which he has is an extreme case, with other defects such as a missing mitral valve & endocardial fibroelastosis, which means the left ventricle is completely made up of scar tissue at this point, preventing it from both developing & functioning. We learned last week that these added complication prevents him from being a candidate for an in utero procedure at Boston Children's Hospital, but at least we know we've tried all we can in that arena. To learn more on this condition, visit www.mayoclinic.com & search "HLHS".
Hard news to take, but this is God's baby & His ways are higher than ours! We're praying for healing & that all will be amazed at what God does, whether that is the supernatural healing of his heart or the success of these surgeries. No matter what, we know God is in control & He will provide everything we need to walk through this.
So please keep our family in your prayers. It is difficult at times, finding the balance between healthy grieving over the situation & making the plans that now seem necessary once he's here, and maintaining faith & trust in God...because there is NOTHING He can't do! What a roller coaster :) We appreciate your prayers for wisdom during this time as we go through more tests to learn more of what's going on with the baby & to make plans for once he's here in light of his medical situation. God has provided some of the very best medical facilities & options available just a few cities away from us - what a blessing! He is in control & our eyes are on Him.
That's the scoop on our little boy. Keep checking this site for updates on his status as we learn more about his condition & make plans for the necessary surgeries once he's here. God is in control!!
Diagram of a Normal Heart
Diagram of a Heart with HLHS
We've known for about a month that he has a heart defect, but could not determine at the first two ultrasounds what it was due to the baby's position, contractions, etc. Thankfully, UNC Chapel Hill Hospital is nearby & we were able to get answers two weeks ago. Our little boy has an irreversible heart condition called HLHS (Hypoplastic Left Heart Syndrome). This syndrome is comprised of several heart defects, most notably a severely underdeveloped left ventricle & aorta. Right now, he's fine while in the womb since the whole heart is working together to distribute healthy blood to the entire body & the placenta is providing the oxygen needed to his blood. However, distribution of oxygenated blood to the body is entirely dependent on the left ventricle & aorta after birth, & thus presents a huge problem as his heart will not be able to do this on its own with this condition. Survival after birth is dependent on one or both of two options. This first is a process of 3 open heart surgeries, the first occurring during the first week of his life & the last at two years to fully reconstruct the structure & flow of the heart. The other option is a full heart transplant in order to survive once he's born. Both options are equally viable & risky. Simply put, he cannot survive w/the heart he currently has. There is no specific known cause for this condition, simply something that can develop in some babies. Thankfully we were able to find out about this now, so that plans & surgeries can be put into place once he's here. Otherwise, he would not last one week after birth if left untreated. The form of HLHS which he has is an extreme case, with other defects such as a missing mitral valve & endocardial fibroelastosis, which means the left ventricle is completely made up of scar tissue at this point, preventing it from both developing & functioning. We learned last week that these added complication prevents him from being a candidate for an in utero procedure at Boston Children's Hospital, but at least we know we've tried all we can in that arena. To learn more on this condition, visit www.mayoclinic.com & search "HLHS".
Hard news to take, but this is God's baby & His ways are higher than ours! We're praying for healing & that all will be amazed at what God does, whether that is the supernatural healing of his heart or the success of these surgeries. No matter what, we know God is in control & He will provide everything we need to walk through this.
So please keep our family in your prayers. It is difficult at times, finding the balance between healthy grieving over the situation & making the plans that now seem necessary once he's here, and maintaining faith & trust in God...because there is NOTHING He can't do! What a roller coaster :) We appreciate your prayers for wisdom during this time as we go through more tests to learn more of what's going on with the baby & to make plans for once he's here in light of his medical situation. God has provided some of the very best medical facilities & options available just a few cities away from us - what a blessing! He is in control & our eyes are on Him.
That's the scoop on our little boy. Keep checking this site for updates on his status as we learn more about his condition & make plans for the necessary surgeries once he's here. God is in control!!
Diagram of a Normal Heart
Diagram of a Heart with HLHS
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