Last April, I packed a few bags with my maternity clothes and some clothes for 'after.' I had no clothes for the baby and that felt weird. I had hats and booties, books and a sign with his name on it. Not knowing what 'after' would be for us was tough. Would the baby make it through the first days and would we be strong enough to stand next to our son covered in wires, tubes and needles poking out him?
I can still feel the sinking in my stomach I felt at every NST, every ultrasound, every time I felt the baby move. I wasn't alone, so many mothers, CDH and otherwise, have that sinking feeling. It's a shame that any parent would have to think about their child's mortality before he/she is even born. But, I truly believe I was chosen to be a high risk pregnancy. I was picked from above; I guess because I could handle it, not sure. I should include Barry too...he was pretty solid through the whole thing, my rock. Together we did research about what life might be like with a CDHer. We prepared for the possible complications. We prepared for a long and stressful NICU stay. We prepared for bringing home a baby that needed nursing support, therapy, medications, oxygen, a feeding tube, etc. Somehow we escaped a lengthy NICU stay, additional surgeries, at-home support, coming home on O2 and feeding tubes...we were so very lucky.
I'm thinking today of all CDH parents preparing for the next phase in their journey. Little Carter Adler is due today in Cincinnati. Please pray for a safe delivery and smooth beginning.
Monday, April 27, 2009
Thursday, April 23, 2009
Projectile vomit is no fun
Jax's day started out pretty great. He took a 2 hour mid morning nap, played with Grandma all day, but then didn't want to take his afternoon nap, fell asleep too early in the evening and awoke around 6 pm cranky.
So, I figured he's up let's feed him...he had a little bottle and then half a piece of wheat bread and some soy pudding. 10 minutes after he finished that...vomitted a little in his high chair, but not a lot. So, wen't upstairs to get his jammies on and administer his evening zantac. He was shaking his head 'no' when I was giving him the zantac, but I didn't put much stock in it, just figured he didn't want to take his meds. 2 minutes later mama and Jax were covered in what can only be described as projectile vomit. Yuck.
I get a little freaked out when he vomits like that as I'm never sure what to make of it - CDH or just upset tummy? We'll watch him closely tonight and hope he's back to his happy self tomorrow morning!
So, I figured he's up let's feed him...he had a little bottle and then half a piece of wheat bread and some soy pudding. 10 minutes after he finished that...vomitted a little in his high chair, but not a lot. So, wen't upstairs to get his jammies on and administer his evening zantac. He was shaking his head 'no' when I was giving him the zantac, but I didn't put much stock in it, just figured he didn't want to take his meds. 2 minutes later mama and Jax were covered in what can only be described as projectile vomit. Yuck.
I get a little freaked out when he vomits like that as I'm never sure what to make of it - CDH or just upset tummy? We'll watch him closely tonight and hope he's back to his happy self tomorrow morning!
Wednesday, April 22, 2009
Letters for CDH
I'm recycling a post that I put up on another CDH parent's blog, because I feel strongly about the effort to take action. Now is as good a time as any! You can check out this new blog about a letter campaign to media/VIPs: http://lettersforcdh.blogspot.com/
I believe whole heartedly that out of our passion as parents who have gone through this all too often devastating journey that not just awareness will come, but break throughs in treatment. I believe that. I wake up everyday and think about victory over CDH.
I know that we all strive to do something to spread the word. Some hold events in their home town, some reach out to media, some provide amazing support to CDH families, some pray and most of us do all of the above. These labors will bear fruit in my opinion. Together we can force change in what has been a somewhat stagnant yet steady fight.
The idea of a round table comes to mind, a meeting of CDH minds! In my professional life when a big task/project needs to be accomplished we hold a meeting, brainstorm and go away with actionable tasks. We're all over the country, yet we all can do something where we are, what is it? Or, maybe it's a collection of things? I'm raising my hand saying a phone conference may not be such a bad idea. Let's get together and figure out what we can accomplish working as a team!
Sarah Mayer
Proud Mama to Jaxson Isaac, born on 5-19-08 with LCDH.
sarahjmayer23@yahoo.com
http://cdhsurvivorjaxson.blogspot.com
Carepage: TheMayers
I believe whole heartedly that out of our passion as parents who have gone through this all too often devastating journey that not just awareness will come, but break throughs in treatment. I believe that. I wake up everyday and think about victory over CDH.
I know that we all strive to do something to spread the word. Some hold events in their home town, some reach out to media, some provide amazing support to CDH families, some pray and most of us do all of the above. These labors will bear fruit in my opinion. Together we can force change in what has been a somewhat stagnant yet steady fight.
The idea of a round table comes to mind, a meeting of CDH minds! In my professional life when a big task/project needs to be accomplished we hold a meeting, brainstorm and go away with actionable tasks. We're all over the country, yet we all can do something where we are, what is it? Or, maybe it's a collection of things? I'm raising my hand saying a phone conference may not be such a bad idea. Let's get together and figure out what we can accomplish working as a team!
Sarah Mayer
Proud Mama to Jaxson Isaac, born on 5-19-08 with LCDH.
sarahjmayer23@yahoo.com
http://cdhsurvivorjaxson.blogspot.com
Carepage: TheMayers
Tuesday, April 21, 2009
The CDH reality
The hard reality of CDH is that 50% of these children don't survive. A baby that survives birth with CDH has a hard fight in front of him/her. The road to recovery is riddled with obstacles that these babies bravely fight to overcome. Sometimes the obstacles are too great.
I read and follow as much as I can about other families struggling with, coping with, and overcoming CDH. Inevitably, I read stories of CDH babies earning their wings. I sometimes feel guilty for how sad I get for these parents and their loss. My child survived this horrible thing so I think I feel guilty because my sadness is nothing compared to what they are dealing with and how can I be getting so upset when they are the ones going through the nightmare. I am mad that they have to go through this. I am frustrated that beyond a small community of families and friends, hardly anyone knows about CDH.
I think about CDH everyday. I think about ways to spread the word. I think about ways to offer comfort to families dealing with the pain and loss of CDH. I think about ways to provide support to families that are just learning about CDH. But I know that thinking is just the start of making a real change in getting the word out about CDH.
Today the CDH community is saddened by the loss of Angel Kaden Alex Kuehl. He fought for 17 days and is now in heaven with many other CDH angels. I wish more than anything that his mom and dad can find peace with this loss. I know my prayers and thoughts will be among many.
I read and follow as much as I can about other families struggling with, coping with, and overcoming CDH. Inevitably, I read stories of CDH babies earning their wings. I sometimes feel guilty for how sad I get for these parents and their loss. My child survived this horrible thing so I think I feel guilty because my sadness is nothing compared to what they are dealing with and how can I be getting so upset when they are the ones going through the nightmare. I am mad that they have to go through this. I am frustrated that beyond a small community of families and friends, hardly anyone knows about CDH.
I think about CDH everyday. I think about ways to spread the word. I think about ways to offer comfort to families dealing with the pain and loss of CDH. I think about ways to provide support to families that are just learning about CDH. But I know that thinking is just the start of making a real change in getting the word out about CDH.
Today the CDH community is saddened by the loss of Angel Kaden Alex Kuehl. He fought for 17 days and is now in heaven with many other CDH angels. I wish more than anything that his mom and dad can find peace with this loss. I know my prayers and thoughts will be among many.
Sunday, April 19, 2009
New to bloggin'
So, I'm pretty new to this blogging thing, so bare with me! In my last post, I described our first ultrasound where we found out that Jaxson had CDH. The days after that news were slow and long. We went back two days after that first ultrasound for an amnio to rule out other possible complications. Waiting for those results was excruciating. The days went by and we were trying to stay busy and learn as much as we could about CDH. Many tears were shed and many prayers were said. The results of the amnio came back and luckily we were not dealing with any other complications.
We turned our energy to researching the best place to transfer Jaxson's care once we was born. In our research we decided we would look at Children's hospital of Pittsburgh as well as Children's in Philadelphia. If we didn't like either of those options we were going to expand to Cincinnati and possible even UCSF in San Francisco. The experience in Pittsburgh was uneventful - we met with a surgeon, he answered our questions, we left. There was no tour of the NICU, no tests on me because they don't have a fetal maternal program there and no assurance that this was the best place for a CDH child. So, we headed to Philadelphia. We stayed with relatives on my side. We arrived in Valley Forge on a chilly February evening to the warm and inviting home of cousin Lynda and Russ. We were nervous about the next day of appointments at CHOP, but looking forward to it as well. There would be more in-depth testing, there was an entire protocol and agenda for this visit. The planner in me felt at ease before we even arrived. My mind was almost already made up before we even set foot on the first hospital built in the US.
We turned our energy to researching the best place to transfer Jaxson's care once we was born. In our research we decided we would look at Children's hospital of Pittsburgh as well as Children's in Philadelphia. If we didn't like either of those options we were going to expand to Cincinnati and possible even UCSF in San Francisco. The experience in Pittsburgh was uneventful - we met with a surgeon, he answered our questions, we left. There was no tour of the NICU, no tests on me because they don't have a fetal maternal program there and no assurance that this was the best place for a CDH child. So, we headed to Philadelphia. We stayed with relatives on my side. We arrived in Valley Forge on a chilly February evening to the warm and inviting home of cousin Lynda and Russ. We were nervous about the next day of appointments at CHOP, but looking forward to it as well. There would be more in-depth testing, there was an entire protocol and agenda for this visit. The planner in me felt at ease before we even arrived. My mind was almost already made up before we even set foot on the first hospital built in the US.
Saturday, April 18, 2009
Starting at the beginning
January 2, 2008 my husband Barry and I bundled up and headed to Allegheny General Hospital in the north side of Pittsburgh for our first ultrasound appointment. The waiting room was not very crowded and we were taken back fairly quickly to meet our baby for the first time. Our ultrasound tech was very nice and patiently walk us through the first of what would become very many ultrasounds.
"Would you like to know the sex of the baby," she asked. The answer was yes, we were dying to know! Seconds later we had our answer, a boy. The first boy on my side of the family in quite some time. The ultrasound tech finished up and said the doctor would need to review her images before we could leave. "Ok, we said and I anxiously called my dad to tell him our news!"
Several long minutes later the doctor came in. His bedside manner was not the best. He was very serious and grimm looking. Barry tried to break the ice with him to no avail. He sat down and began taking more images of my belly. We sat silent, exchanging glances at each other while we waited for the doctor to be finished. Finally, he told me to clean my belly and sit up.
His words exactly, "I do not have good news for you." That was the beginning of our CDH journey.
"Would you like to know the sex of the baby," she asked. The answer was yes, we were dying to know! Seconds later we had our answer, a boy. The first boy on my side of the family in quite some time. The ultrasound tech finished up and said the doctor would need to review her images before we could leave. "Ok, we said and I anxiously called my dad to tell him our news!"
Several long minutes later the doctor came in. His bedside manner was not the best. He was very serious and grimm looking. Barry tried to break the ice with him to no avail. He sat down and began taking more images of my belly. We sat silent, exchanging glances at each other while we waited for the doctor to be finished. Finally, he told me to clean my belly and sit up.
His words exactly, "I do not have good news for you." That was the beginning of our CDH journey.
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