Thank you to everyone who is ask about supporting a memorial fund. We have set up a memorial fund at the University of Florida Shands. The information for donating is below. Thank you to everyone who contributes, every penny makes a difference in the fight against CDH.
A Memorial Fund has been set up in Memory of Jackson Dean Purvis son of DeWayne and Caroline Purvis at the University of Florida Shands. The Fund will support Congenital Diaphragmatic Hernia (CDH) research under the administration of Dr. David W. Kays.
Donors can call 877-351-2377 to contribute with a credit/debit card. Communication with the operator needs to include Jackson's full name along with the fund number - 008237
A check can be mailed to University of Florida, PO Box 14425 Gainesville, FL 32604 Be sure to include Jackson Dean Purvis #008237 on the memo line.
A card will be mailed to DeWayne and Caroline acknowledging the gift.
Thank you,
Caroline, DeWayne, and Jackson
Monday, July 22, 2013
Sunday, July 21, 2013
Jackson Dean
Jackson Dean was born on July 16, 2013 and passed away a few hours later in the arms of his mother. Thank you all for your prayers and support. While we wanted to keep Jax here on earth with us, God had other plans for him. We will forever remember our first born son and he will always have a piece of our hearts.
Thank you to each and everyone of you who have prayed for us and our families during this time. Please help spread the word about CDH and support the efforts by doctors and researchers to work to better understand the birth defect in hopes that other parents will never have to experience the heart ache we have felt this past week.
It is not good bye little boy, it's just see you later.
Thank you to each and everyone of you who have prayed for us and our families during this time. Please help spread the word about CDH and support the efforts by doctors and researchers to work to better understand the birth defect in hopes that other parents will never have to experience the heart ache we have felt this past week.
It is not good bye little boy, it's just see you later.
Tuesday, July 16, 2013
Morning July 16, 2013
Good morning! Nothing big to report here, Praise God! Everyone slept well last night and DeWayne is back at work this morning. Sometime today Jackson and I will be getting an MRI, but that could be anytime today. Once we have the MRI it will still take a while to get the results. We hope to meet with Dr. Kays again either today or tomorrow. The MRI will show the severity of the CDH. Please be in prayer that his liver is not involved in the hernia as this will increase the severity. If the liver is involved, please be in prayer for us as we will need to come to grips with this diagnosis.
Have a great day and thanks again!
DeWayne, Caroline, and Jackson
Have a great day and thanks again!
DeWayne, Caroline, and Jackson
Monday, July 15, 2013
Uneventful Monday July 15
Today has been another uneventful day! DeWayne went back to work this morning and was able to work a full day. He did manage to come to the hospital for lunch which great. My mom (Caroline's mom) has been wonderful and is in town until Jackson is born. She is staying with me all day while DeWayne is at work for which I am extremely grateful. We had a lot of visits from doctors today and all had positive things to say about my health and Jackson's. He is holding very stable without the medications I was on previously which is a huge blessing. The last member of our team, Dr. Gregg, made it back into town today and he came by. It was a great visit with him and he is extremely positive and firmly believes we can have a positive outcome. The situation is still very critical at this time, but very hour that passes right now is huge. Dr. Gregg is coming back tomorrow to re-evaluate and determine if I can move to another part of the floor where I am less monitored. This would be a positive move and reflect that they believe I am holding steady and out of immediate danger. Pray this can happen tomorrow or sometime in the near future.
Thanks again for all the prayers and kind words of encouragement.
DeWayne, Caroline, and Jackson
Thanks again for all the prayers and kind words of encouragement.
DeWayne, Caroline, and Jackson
25 Weeks!
Yay we made it 25 weeks!!! That was goal number 2 when we got here so it feels amazing to have accomplished it. Praise God for He is good all the time!
Caroline slept over 9 hours last night which was perfect! The doctors have also decreased the meds to keep little Jackson in place and he has responded beautifully.
DeWayne is back at work this morning, but will come by for lunch.
Keep the prayers coming and we will hopefully enjoy another uneventful day!
DeWayne, Caroline, and Jackson
Caroline slept over 9 hours last night which was perfect! The doctors have also decreased the meds to keep little Jackson in place and he has responded beautifully.
DeWayne is back at work this morning, but will come by for lunch.
Keep the prayers coming and we will hopefully enjoy another uneventful day!
DeWayne, Caroline, and Jackson
Sunday, July 14, 2013
Evening July 14
Today has been a very uneventful day! This is exactly what we are praying for. I have been able to stay very stable as has Jackson. I have even felt well enough today to eat a lot more. They are telling us that while we are focusing on Jackson staying put until 34 weeks (at least) the biggest goal is to get him to weigh 4.4 pounds. In order for this to happen I have to eat, a lot!!! I was able to enjoy an entire bag of gummy bears today, which has become the joke of the room since I did not even realize I was eating the entire bag until they were gone! Oh well more calories for Jackson.
Several people have been asking about the CDH and I wanted to take a minute to let you all know a few things. First, the CDH diagnosis while very difficult at first is something DeWayne and I have had time to come to grips with and have come to realize is simply part of Jackson's journary to becoming a strong, amazing, man one day. It is not something that will define him, but is something that will make him stronger. All of that being said, it is scary. The diagnosis is extremely hard to hear and the possible complications with a full-time are high. We have been able to deal with this reality and feel we have a choice: we can either bury our heads in the sand and ignore the problem and feel bad for ourselves and Jax or face it head on and beat CDH and allow it to simply be a part of our family story. We have prayed often and will continue to pray for God's healing on Jax and his CDH, but in so many ways our prayers are being answered every single day. Dr. David Kays is in town, he has hope for Jax, Jackson's heart while shifted to the right is developing normally, he is growing right on schedule (45% I mean really have you met his parents that's kind of impressive he is that big!), he is super active and most importantly he is a child of God. With all of these positives we firmly believe that one day Jackson Dean will come home with us and we will look back on these days simply as days I was able to be a stay at home (or hospital) mom who gave Jackson her undivided attention. Until then we will continue to pray that the seriousness of his hernia is at a minimual and that God is able to work through Dr. Kays to repair his hernia.
During our time here we are going to collect scripture vereses that are encouraging and uplifting to our family. If you have any verses now or anytime in the future you would like to share please do so. If not verses simply quotes that are positive and you feel would help us during this time would be great.
Thank you all again for the love, support, and prayers!
DeWayne, Caroline, Jackson
Several people have been asking about the CDH and I wanted to take a minute to let you all know a few things. First, the CDH diagnosis while very difficult at first is something DeWayne and I have had time to come to grips with and have come to realize is simply part of Jackson's journary to becoming a strong, amazing, man one day. It is not something that will define him, but is something that will make him stronger. All of that being said, it is scary. The diagnosis is extremely hard to hear and the possible complications with a full-time are high. We have been able to deal with this reality and feel we have a choice: we can either bury our heads in the sand and ignore the problem and feel bad for ourselves and Jax or face it head on and beat CDH and allow it to simply be a part of our family story. We have prayed often and will continue to pray for God's healing on Jax and his CDH, but in so many ways our prayers are being answered every single day. Dr. David Kays is in town, he has hope for Jax, Jackson's heart while shifted to the right is developing normally, he is growing right on schedule (45% I mean really have you met his parents that's kind of impressive he is that big!), he is super active and most importantly he is a child of God. With all of these positives we firmly believe that one day Jackson Dean will come home with us and we will look back on these days simply as days I was able to be a stay at home (or hospital) mom who gave Jackson her undivided attention. Until then we will continue to pray that the seriousness of his hernia is at a minimual and that God is able to work through Dr. Kays to repair his hernia.
During our time here we are going to collect scripture vereses that are encouraging and uplifting to our family. If you have any verses now or anytime in the future you would like to share please do so. If not verses simply quotes that are positive and you feel would help us during this time would be great.
Thank you all again for the love, support, and prayers!
DeWayne, Caroline, Jackson
Sunday morning July 14
Last night was by far the best night we have had seen Tuesday night(which of course was at home). Jackson stayed very stable all night, Caroline slept over 8 hours, and DeWayne slept about 8 hours as well. We really think the sleep will help all of us because we are running a marathon not a sprint and we have a long ways to go (ok it really maybe longer than a marathon more like a 50k or an ironman but you get the picture).
We are planning to spend our morning just relaxing until First Baptist starts online at 10:50 and we will be able to be at church from Shands! How great is technology:-).
Please pray we continue to have an uneventful day. Tomorrow is our next goal and we are keeping our eyes on the prize!
Love to all,
DeWayne, Caroline, and Jackson
We are planning to spend our morning just relaxing until First Baptist starts online at 10:50 and we will be able to be at church from Shands! How great is technology:-).
Please pray we continue to have an uneventful day. Tomorrow is our next goal and we are keeping our eyes on the prize!
Love to all,
DeWayne, Caroline, and Jackson
Saturday, July 13, 2013
Wednesday July 10, 2013
Wednesday, July 10, 2013 will forever be a day that DeWayne and I remember. This is the day my water broke at 2:45pm at 24 weeks and 2 days pregnant with our first child, Jackson Dean. DeWayne and I were home about to leave for a regularly scheduled OB appointment when I began to feel contractions and pressure and within minutes my water had broken. We arrived at Shands at the University of Florida by 3:10 (maybe sooner) and were admitted. The staff has been beyond amazing at stopping my labor and allowing Jax to stay put.
While Wednesday night was by far one of the hardest nights of our lives with us forced to make decisions that no one should ever be faced with making, that night as past and we are focusing on the future. Since Jax has CDH (please read about CDH above) it is extremely important that he remains put for as long as possible to give him the greatest chance of survival. The first 48 hours we were here were important as I was given a steroid shotswithin minutes of arrival. His odds of survival increased at 48 hours and will continue to increase with each passing minute/hour. The CDH lowers his survival rate even at full-term and this is something we have had 7 weeks to digest and understand. We are very fortunate that we have been aware of the CDH for as long as we have. We have spent the past 7 weeks learning about CDH and gathering a group of doctors whom we believe are the best for all three of us (It should be noted not a single one of these doctors were around Wednesday when we arrived, which of course added to our stress level!).
Dr. David Kays is a world renowned surgeon who has the highest success rate in the world on CDH babies! He is located here at Shands which is beyond a blessing (God always has a plan!). We were able to meet with Dr. Kays yesterday (he was out of town until then) and he is so compassionate and caring and truly wants whats best for Jax. We have complete confidence in his ability and that through him God will work a miracle for our little man. Dr. Kay Roussos-Ross is the OB we selected from the beginning of this pregnancy and she is amazing beyond words. She is able to relax me (Caroline) and understands and respects all of our decisions. As my mom said yesterday when we first saw Dr. Roussos and I talking she felt like we were just sorority girls talking and later realized how incredibly intelligent she is (seriously she is crazy smart!). Dr. Gregg and Dr. Eggerman are the final two doctors on Jackson's team. They are both high-risk OB's and we have met with both of them several times and are extremely comfortable in their abilities. These 4 individuals are in charge! They have all four worked together previously and are very thrilled with the team we have in place. DeWayne and I have complete confidence in these 4 individuals and their ability to deliver Jackson when it is time and provide him with the life we dream of for him. Please pray for these 4 individuals as they continue to monitor myself and Jax and pray for their knowledge and skills.
Please continue to pray for us as each hour is critical. Today has been a good day overall, with Jax and myself remaining stable for a majority of the day. I am on a magnesium drop to decrease my contractions and while there are horrible side effects (not long term just not fun at the time) I am willing to do this for our little man. Please pray for my strength in this area as it may many days and possibly weeks of these side effects.
If you would like to receive updates from us on the status of myself and Jax please subscribe on the right side of the screen and you should receive an email anytime we update. Thank you all for the support and love.
Short-term goal: Make it to Monday, July 15 as this is 25 weeks
Mid-term goal: Make it to Monday, July 29. We have been told 27 weeks is another big milestone for Jax to make it to.
Long-term goal: Make it to Monday September 16. This is 34 weeks and at 34 weeks several more options to treat the CDH become available to us.
Ultimate Goal: Make it to 38 weeks when Jax was suppose to be delivered originally (Oct. 14-18).
Thank you all,
DeWayne, Caroline and Jackson
While Wednesday night was by far one of the hardest nights of our lives with us forced to make decisions that no one should ever be faced with making, that night as past and we are focusing on the future. Since Jax has CDH (please read about CDH above) it is extremely important that he remains put for as long as possible to give him the greatest chance of survival. The first 48 hours we were here were important as I was given a steroid shotswithin minutes of arrival. His odds of survival increased at 48 hours and will continue to increase with each passing minute/hour. The CDH lowers his survival rate even at full-term and this is something we have had 7 weeks to digest and understand. We are very fortunate that we have been aware of the CDH for as long as we have. We have spent the past 7 weeks learning about CDH and gathering a group of doctors whom we believe are the best for all three of us (It should be noted not a single one of these doctors were around Wednesday when we arrived, which of course added to our stress level!).
Dr. David Kays is a world renowned surgeon who has the highest success rate in the world on CDH babies! He is located here at Shands which is beyond a blessing (God always has a plan!). We were able to meet with Dr. Kays yesterday (he was out of town until then) and he is so compassionate and caring and truly wants whats best for Jax. We have complete confidence in his ability and that through him God will work a miracle for our little man. Dr. Kay Roussos-Ross is the OB we selected from the beginning of this pregnancy and she is amazing beyond words. She is able to relax me (Caroline) and understands and respects all of our decisions. As my mom said yesterday when we first saw Dr. Roussos and I talking she felt like we were just sorority girls talking and later realized how incredibly intelligent she is (seriously she is crazy smart!). Dr. Gregg and Dr. Eggerman are the final two doctors on Jackson's team. They are both high-risk OB's and we have met with both of them several times and are extremely comfortable in their abilities. These 4 individuals are in charge! They have all four worked together previously and are very thrilled with the team we have in place. DeWayne and I have complete confidence in these 4 individuals and their ability to deliver Jackson when it is time and provide him with the life we dream of for him. Please pray for these 4 individuals as they continue to monitor myself and Jax and pray for their knowledge and skills.
Please continue to pray for us as each hour is critical. Today has been a good day overall, with Jax and myself remaining stable for a majority of the day. I am on a magnesium drop to decrease my contractions and while there are horrible side effects (not long term just not fun at the time) I am willing to do this for our little man. Please pray for my strength in this area as it may many days and possibly weeks of these side effects.
If you would like to receive updates from us on the status of myself and Jax please subscribe on the right side of the screen and you should receive an email anytime we update. Thank you all for the support and love.
Short-term goal: Make it to Monday, July 15 as this is 25 weeks
Mid-term goal: Make it to Monday, July 29. We have been told 27 weeks is another big milestone for Jax to make it to.
Long-term goal: Make it to Monday September 16. This is 34 weeks and at 34 weeks several more options to treat the CDH become available to us.
Ultimate Goal: Make it to 38 weeks when Jax was suppose to be delivered originally (Oct. 14-18).
Thank you all,
DeWayne, Caroline and Jackson
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