Today was our first visit back to our regular OB since learning of Sara Kay's diagnosis. She has been fantastic and is supporting us in whatever way she can. She told us to let her know how often we want to be seen and that is okay with her, whether it be every day or still just once a month. We decided on 2 weeks between visits, I guess it just feels right. She helped us come up with a plan for how to proceed.
Any time we want an ultrasound, it will happen. If we want to come back more often, it will happen, if we want to wait longer, it will happen.
We appreciate everyone that is praying for us and keeping us in their thoughts. It means the world to us. The past few days have seen us feel a little bit calmer, ever since the baptism on Saturday. We know God is taking care of us, and we owe all of you a debt of gratitude for that.
Monday, July 20, 2009
Saturday, July 18, 2009
Baptised in Christ
This afternoon, accompanied by our parents, we went to St. Peter the Apostle Church here in Birmingham and had Sara Kay baptised. Fr. Kelly baptised her with waters from the Jordan River and said prayers over us for strength to make it through this difficult time.
It was a very emotional ceremony, but it is very reassuring now knowing that she is taken care of.
Monday we go back to our regular OB doctor. This will be our first time back to see her since we got the diagnosis a couple weeks ago.
Thank you for your continued prayers and support.
~~ Krystal and Todd
It was a very emotional ceremony, but it is very reassuring now knowing that she is taken care of.
Monday we go back to our regular OB doctor. This will be our first time back to see her since we got the diagnosis a couple weeks ago.
Thank you for your continued prayers and support.
~~ Krystal and Todd
Thursday, July 9, 2009
Brief Update
Krystal and I met with a genetic counselor today. The results of the amniocentesis last week showed triploidy, meaning instead of two sets of chromosomes, Sara Kay has three. More often than not, these babies are first trimester miscarriages. The ones that survive longer might be stillborn prematurely or might survive all the way to full term and live for a few hours or days after birth. There's no way to predict what will happen with Sara Kay, so for now we just continue to wait and pray. The heart and brain defects with the small growth are pretty typical, and these babies tend to have other problems that can't be seen on ultrasound. There was a concern for a problem called DiGeorge Syndrome because of the specific heart defect seen with Sara, but the test for that was negative.
We have been assured that this was just a fluke occurence, there's nothing we could have done to prevent it, there's nothing we did to cause it, and there will be no effect on future pregnancies. Still, it is all little comfort, Sara has been our first, and we so long to hold her close.
The response we have received from so many people, both people we know and people we have never met has been absolutely uplifting. We want to thank you all again for your prayers and support during this difficult time.
~~Todd and Krystal
We have been assured that this was just a fluke occurence, there's nothing we could have done to prevent it, there's nothing we did to cause it, and there will be no effect on future pregnancies. Still, it is all little comfort, Sara has been our first, and we so long to hold her close.
The response we have received from so many people, both people we know and people we have never met has been absolutely uplifting. We want to thank you all again for your prayers and support during this difficult time.
~~Todd and Krystal
Thursday, July 2, 2009
The most devastating news imaginable
Earlier this afternoon, the MFM doctor called with the preliminary results of the amniocentesis. Sweet baby Sara Kay has a lethal genetic defect and will not be able to survive outside the womb. Please continue to pray for her, that she doesn't experience any suffering. Please continue to pray for us, that we have the strength to come through this most difficult time. Thank you for all of your prayers, love, and support.
~ Krystal and Todd
~ Krystal and Todd
Wednesday, July 1, 2009
Time to bring everybody up to speed
Krystal and I originally started this blog as something for the two of us to do to journal our thoughts as the pregnancy went along. We didn't have any definite plans to open it up to others to read, and as you can see by the existence of just two previous posts, we didn't exactly stick with it. At this point though, we feel the need to resume posting to the blog, as well let everyone know about it so you can follow along.
There's been a lot going on over the past couple weeks with still more information to come over the course of the next month. We've been asking for prayers from people directly, posting that desire on Facebook, and family and friends have passed the word on that prayers for Krystal, our unborn baby girl, and myself are greatly appreciated. That may be everything that some of you know about what is going on, others have a more specific idea either from talking to us or our family.
This post will lay out everything that we know right now, our current impression of what it means, and what information we hope to be learning over the coming weeks. We hope to do a better job this time around of keeping things updated. With so many people out there keeping us in their thoughts and prayers, we want to keep all of you informed about what is going on as a thank you. So here goes...
Last week (Tuesday) at our regularly scheduled follow-up visit we also had our scheduled second-trimester ultrasound to check the growth and development of the baby. We had had an ultrasound about 3 weeks prior that determined girl, and we certainly hoped this would confirm that. While it did just that, we unfortunately also found out that there were some problems found. After the tech was finished, we were brought back to the doctor's office, and our OB came in to talk to us about what was found. She told us that the baby only has a 2-vessel umbilical cord (normal is 3), she was about 3-4 weeks smaller than expected, only 1 kidney was seen, and the tech did not see a stomach. That constellation of findings made her concerned for a genetic problem, possibly a trisomy, and she let us know that she was going to refer us to the Maternal-Fetal Medicine specialists at UAB for further evaluation and possible amniocentesis. This was late in the afternoon, so the referral wouldn't be able to be faxed in until the morning, and we had to wait to find out how quickly we would be able to get an appointment at UAB. Fortunately, we received a call early the next day with an appointment for the following week. Yesterday, to be more exact.
So yesterday morning we went to UAB and got yet another ultrasound. After lots of prayers from lots of people, we were excited to see the tech find both the stomach and the 2nd kidney. When the doctor came in to do her own scan after the tech was done taking measurements, however, new problems were discovered. Sara Kay, as we've decided to name her, still measured about 4 weeks small and has developed with malformations in her brain and in her heart.
The malformation in her brain is known as a Dandy-Walker malformation. It is a problem with the cerebellum at the back of the brain with one part being underdeveloped and problems with flow of the fluid around the brain and spinal cord that can cause an increase in fluid and pressure around the brain. It has a broad spectrum of presentation, anywhere from asymptomatic to severe debilitation.
The malformation in her heart will require further evaluation, however at this point it appears the most likely diagnosis is called a truncus arteriosus. This occurs when there is a failure of the single great vessel to divide into separate pulmonary artery trunk and aorta. It is accompanied by a ventricular septal defect allowing the blood to flow from both the right and left ventricles out this single great vessel, then separates to the lungs and the rest of the body. Thankfully, this can be surgically corrected soon after birth by placement of a patch to close the VSD, the single great vessel functioning as the aorta, and a graft with a valve being put in place to connect the pulmonary arteries to the right ventricle.
With the presence of both of these, the small growth, and the 2-vessel umbilical cord, we made the decision along with our doctor to have an amniocentesis done, to evaluate her genetics and try to gather more information about what could potentially be causing these problems.
We should know some preliminary results from the amniocentesis, hopefully, tomorrow. These early results will tell us if there are any major defects, like missing/extra chromosomes or large deletions. The results of the full analysis will take two weeks to get back. Once that is done, we will follow up with the MFM specialist and begin setting up a pediatric cardiology referral to further evaluate and diagnose her heart condition via fetal echocardiogram. In the mean-time, we wait and continue our routine care with our primary OB who has been wonderful and called us at home yesterday to find out how the visit went.
Again, we would like to thank all of you for your prayers so far. We know some have already been answered, as we now know that she does have both kidneys and her stomach. Now that we have a better idea of what is going on, we'd like to ask you to continue to pray for us and to specifically keep in mind Sara Kay's heart, brain, and growth. We need her to be good and strong when she is born to speed up how quickly she can go to the OR and have her heart fixed.
Thanks again, and feel free to post any comments and/or questions.
~Todd
There's been a lot going on over the past couple weeks with still more information to come over the course of the next month. We've been asking for prayers from people directly, posting that desire on Facebook, and family and friends have passed the word on that prayers for Krystal, our unborn baby girl, and myself are greatly appreciated. That may be everything that some of you know about what is going on, others have a more specific idea either from talking to us or our family.
This post will lay out everything that we know right now, our current impression of what it means, and what information we hope to be learning over the coming weeks. We hope to do a better job this time around of keeping things updated. With so many people out there keeping us in their thoughts and prayers, we want to keep all of you informed about what is going on as a thank you. So here goes...
Last week (Tuesday) at our regularly scheduled follow-up visit we also had our scheduled second-trimester ultrasound to check the growth and development of the baby. We had had an ultrasound about 3 weeks prior that determined girl, and we certainly hoped this would confirm that. While it did just that, we unfortunately also found out that there were some problems found. After the tech was finished, we were brought back to the doctor's office, and our OB came in to talk to us about what was found. She told us that the baby only has a 2-vessel umbilical cord (normal is 3), she was about 3-4 weeks smaller than expected, only 1 kidney was seen, and the tech did not see a stomach. That constellation of findings made her concerned for a genetic problem, possibly a trisomy, and she let us know that she was going to refer us to the Maternal-Fetal Medicine specialists at UAB for further evaluation and possible amniocentesis. This was late in the afternoon, so the referral wouldn't be able to be faxed in until the morning, and we had to wait to find out how quickly we would be able to get an appointment at UAB. Fortunately, we received a call early the next day with an appointment for the following week. Yesterday, to be more exact.
So yesterday morning we went to UAB and got yet another ultrasound. After lots of prayers from lots of people, we were excited to see the tech find both the stomach and the 2nd kidney. When the doctor came in to do her own scan after the tech was done taking measurements, however, new problems were discovered. Sara Kay, as we've decided to name her, still measured about 4 weeks small and has developed with malformations in her brain and in her heart.
The malformation in her brain is known as a Dandy-Walker malformation. It is a problem with the cerebellum at the back of the brain with one part being underdeveloped and problems with flow of the fluid around the brain and spinal cord that can cause an increase in fluid and pressure around the brain. It has a broad spectrum of presentation, anywhere from asymptomatic to severe debilitation.
The malformation in her heart will require further evaluation, however at this point it appears the most likely diagnosis is called a truncus arteriosus. This occurs when there is a failure of the single great vessel to divide into separate pulmonary artery trunk and aorta. It is accompanied by a ventricular septal defect allowing the blood to flow from both the right and left ventricles out this single great vessel, then separates to the lungs and the rest of the body. Thankfully, this can be surgically corrected soon after birth by placement of a patch to close the VSD, the single great vessel functioning as the aorta, and a graft with a valve being put in place to connect the pulmonary arteries to the right ventricle.
With the presence of both of these, the small growth, and the 2-vessel umbilical cord, we made the decision along with our doctor to have an amniocentesis done, to evaluate her genetics and try to gather more information about what could potentially be causing these problems.
We should know some preliminary results from the amniocentesis, hopefully, tomorrow. These early results will tell us if there are any major defects, like missing/extra chromosomes or large deletions. The results of the full analysis will take two weeks to get back. Once that is done, we will follow up with the MFM specialist and begin setting up a pediatric cardiology referral to further evaluate and diagnose her heart condition via fetal echocardiogram. In the mean-time, we wait and continue our routine care with our primary OB who has been wonderful and called us at home yesterday to find out how the visit went.
Again, we would like to thank all of you for your prayers so far. We know some have already been answered, as we now know that she does have both kidneys and her stomach. Now that we have a better idea of what is going on, we'd like to ask you to continue to pray for us and to specifically keep in mind Sara Kay's heart, brain, and growth. We need her to be good and strong when she is born to speed up how quickly she can go to the OR and have her heart fixed.
Thanks again, and feel free to post any comments and/or questions.
~Todd
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