So i have had alot of people asking me how long the baby would be in the hospital. Every CDH baby is different so there's really no way of knowing, but the average stay for them is 4 to 6 months. I know that's a very long time! We're praying that our baby Jackson will have a short stay. Our doctors seem to think it wont be 6 months but then they wont confirm anything. They say even if he's doing good that the feeding is a huge obstacle for these babies. So I'm praying he'll do great and wont have to many problems with this. Thanks again for all yall prayers and support.
Candice
Wednesday, May 27, 2009
Wednesday, May 20, 2009
GREAT NEWS!
We went to meet the neonatoligist Monday 5/18/09. She was awesome! She was so easy to talk to and just wanted to inform us on everything plus more. She will be the main doctor taking care of our little Jackson while he's in the NICU. Her name is doctor Whitbourn. I'm glad that Rob got to be there with me when i met her because most of these appointments he has to miss due to his work, although he has made all the important ones so far.
Dr. Whitbourn came in with our file and was very excited to read our situation. She had no idea that our CDh baby looked so good. Needles to say she was very surprised to see that the baby just had his stomach up in his chest and that my doctor has already seen the left lung developing since he met me at 20 weeks. She said that was just amazing and very very good news for us. She hasn't had a case like this in a long time. She said there are 3 cdh babies to be born there before i give birth in July, and 3 more after i give birth! I was shocked to find that out. I mean this is kind of a rare condition. Anyways out of all these babies she told us that our baby looks the best and is on the mild in of the spectrum, if there is a mild end. I mean as good as everything looks having a CDH baby is still a very serious and life thring defect.
I know i haven't talked about ECMO on my blog yet but it's a lung heart bypass machine that these babies get put on if the ventilator and everything else that the doctors are trying to do isn't enough for the baby. So ECMO is pretty much life support for these babies. I will write more about ECMO here in a bit. One out of three babies that are put on ECMO come off. This means 1 out of 3 don't survive. Not all the cdh babies get bad enough to be put on ECMO but alot do and thats why it's there. Dr. Whitbourn gave us some great news on this as well. She said by reading our babies case that she is almost positive that our baby will not go on ECMO. YAY! Then she said she wasn't God and things could change but everything looks very positive for us as of right now. I took that very well, just because she is the doctor that takes care of these babies and knows what to expect and i doubt she would tell us such good news when she sees everything she does. She also told us she would pray for us and the baby and i thought that was really neat.
So that's all the news i have for now. We just need to pray really hard that the left lung keeps developing and the stomach is the only thing that stays in the chest. My son Ty was praying for the baby last night and i tried to explain what lungs were and what they did and that we needed to pray for Jackson's left lung to keep on growing. This is what is prayer was " dear God please help my baby Jackson to be healthy and let his left lump grow sooooo big". It was really funny! Until next time.......................................
Candice
Dr. Whitbourn came in with our file and was very excited to read our situation. She had no idea that our CDh baby looked so good. Needles to say she was very surprised to see that the baby just had his stomach up in his chest and that my doctor has already seen the left lung developing since he met me at 20 weeks. She said that was just amazing and very very good news for us. She hasn't had a case like this in a long time. She said there are 3 cdh babies to be born there before i give birth in July, and 3 more after i give birth! I was shocked to find that out. I mean this is kind of a rare condition. Anyways out of all these babies she told us that our baby looks the best and is on the mild in of the spectrum, if there is a mild end. I mean as good as everything looks having a CDH baby is still a very serious and life thring defect.
I know i haven't talked about ECMO on my blog yet but it's a lung heart bypass machine that these babies get put on if the ventilator and everything else that the doctors are trying to do isn't enough for the baby. So ECMO is pretty much life support for these babies. I will write more about ECMO here in a bit. One out of three babies that are put on ECMO come off. This means 1 out of 3 don't survive. Not all the cdh babies get bad enough to be put on ECMO but alot do and thats why it's there. Dr. Whitbourn gave us some great news on this as well. She said by reading our babies case that she is almost positive that our baby will not go on ECMO. YAY! Then she said she wasn't God and things could change but everything looks very positive for us as of right now. I took that very well, just because she is the doctor that takes care of these babies and knows what to expect and i doubt she would tell us such good news when she sees everything she does. She also told us she would pray for us and the baby and i thought that was really neat.
So that's all the news i have for now. We just need to pray really hard that the left lung keeps developing and the stomach is the only thing that stays in the chest. My son Ty was praying for the baby last night and i tried to explain what lungs were and what they did and that we needed to pray for Jackson's left lung to keep on growing. This is what is prayer was " dear God please help my baby Jackson to be healthy and let his left lump grow sooooo big". It was really funny! Until next time.......................................
Candice
Wednesday, May 13, 2009
A LITTLE INFORMATION
Here's a little information for all my family and friends. As everyone knows CDH babies are given a 50% chance of survival after birth, but it's not just that easy. The 50% that do survive have to fight so hard for their lives. It is a huge struggle for these fragile little babies that are trying to survive. We are praying everyday and every night for our little Jackson to survive. We also have to remember that the journey to make it is going to be the hardest thing he will ever have to go through. I've read so much on what these babies have to go through and it is so scary. I can't imagine having to watch my baby fight for every breath, every movement,every single thing that a normal baby can just do without a fight. I Don't know how hard it's going to be watching our baby fighting for his life. The only thing i do know is he can't do it without God. These babies also endure alot of pain. To help them deal with this the doctors have them on high dosages of morphine. Alot of times they just keep them so sedated that they are constantly sleeping. The doctors do this because the little babies are wiggle worms. Lord knows mine is already a wiggle worm.
The remaining 50% that do survive could have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many of these babies have no long-lasting medical problems at all. We pray that the only way you can tell that our little boy was ever born with CDH is the scar from the hernia repair. Every CDH baby is different, there is no way to predict the outcome of any baby. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support. This is why i still worry so much. Our little Jacksons CDH isn't as bad as alot are and the doctors are so happy with him. I hear all this good news then i go back to the Internet and see that it really doesn't matter, if the child is diagnosed with CDH it is not good.
Thank you everyone for all your prayers and messages. We are anticipating the birth of our child but are so very nervous and have no idea what to expect, even with all the research i do. I'll update everyone after our next appointment on the 18th.
The remaining 50% that do survive could have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency. A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems. Many of these babies have no long-lasting medical problems at all. We pray that the only way you can tell that our little boy was ever born with CDH is the scar from the hernia repair. Every CDH baby is different, there is no way to predict the outcome of any baby. Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not. These children are very different, requiring different treatments, and varying amounts of medical support. This is why i still worry so much. Our little Jacksons CDH isn't as bad as alot are and the doctors are so happy with him. I hear all this good news then i go back to the Internet and see that it really doesn't matter, if the child is diagnosed with CDH it is not good.
Thank you everyone for all your prayers and messages. We are anticipating the birth of our child but are so very nervous and have no idea what to expect, even with all the research i do. I'll update everyone after our next appointment on the 18th.
Tuesday, May 5, 2009
LEAVING ME COMMENTS
OH BY THE WAY......I HAVE HAD SO MANY PEOPLE TELL ME THAT IT WAS VERY DIFFICULT TO LEAVE A COMMENT ON HERE...SO I THINK I FIXED IT! PLEASE TRY AGAIN AND LET ME KNOW.
Update on my visit to the doctor Monday
First off i want to thank everybody that has been praying for us and our son Jackson. Thank you all for the sweet comments and messages. It really helps me knowing that we have all these people praying for us. Keep it up!
I wanted to mention some of the people i have met online since I've created my cdh blog. One family is the Reeve's family, they are pregnant with their first baby and he was diagnosed with cdh as well. They are so excited about their baby boy and can't wait to bring him home. If yall could keep them in your prayers it would mean alot to me as it would to them. I also just got a message from the studdard family. They are pregnant with Twins! One of her twins was diagnosed with cdh. They are due July 8th. Lets remember to keep them in our prayers to.
Now an update on baby beal! I went to the doctor yesterday (May 4th 09) and the doctor was very happy with what he saw. Of course i had another sonogram, and it still looks like the only thing in his chest is the stomach. That's what I've been praying for. See the less organs in the chest area the more the lungs can develop. The less they have to move during surgery the better chance of no other complications afterwards as well. The Doctor says he is growing great, and my fluids look awesome! See if the amniotic fluid is high that suggest other problems and could mean early delivery or pre term labor. Alot of these cdh pregnancies have to deal with high fluids. I am praying that my fluids stay normal and that nothing else moves up into the chest. So for all of you that are praying for us make sure and remember to pray for those 2 things specifically!
I thought i was suppose to meet the pediatric surgeon and the NICU doctor yesterday but doctor Howard said next time. I will know so much more after i talk to them. I will update some more on my thoughts tomorrow..........Baby Jackson Beal is going to make it! I believe God will save him!
I wanted to mention some of the people i have met online since I've created my cdh blog. One family is the Reeve's family, they are pregnant with their first baby and he was diagnosed with cdh as well. They are so excited about their baby boy and can't wait to bring him home. If yall could keep them in your prayers it would mean alot to me as it would to them. I also just got a message from the studdard family. They are pregnant with Twins! One of her twins was diagnosed with cdh. They are due July 8th. Lets remember to keep them in our prayers to.
Now an update on baby beal! I went to the doctor yesterday (May 4th 09) and the doctor was very happy with what he saw. Of course i had another sonogram, and it still looks like the only thing in his chest is the stomach. That's what I've been praying for. See the less organs in the chest area the more the lungs can develop. The less they have to move during surgery the better chance of no other complications afterwards as well. The Doctor says he is growing great, and my fluids look awesome! See if the amniotic fluid is high that suggest other problems and could mean early delivery or pre term labor. Alot of these cdh pregnancies have to deal with high fluids. I am praying that my fluids stay normal and that nothing else moves up into the chest. So for all of you that are praying for us make sure and remember to pray for those 2 things specifically!
I thought i was suppose to meet the pediatric surgeon and the NICU doctor yesterday but doctor Howard said next time. I will know so much more after i talk to them. I will update some more on my thoughts tomorrow..........Baby Jackson Beal is going to make it! I believe God will save him!
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