Calling all volunteers...

Hi all,
Most of you know that last year Jaxson's Jog benefited a relatively new CDH organization called Global CDH. I specifically picked this organization because their mission is to help support parents with the emotional and financial hardships of a NICU stay and the challenges of taking a CDH baby home. I recently began volunteering as Communications Advisor for the organization. I assist with general communications as well as the search marketing and social media efforts.

At my first staff meeting, an announcement was made that there are additional volunteer staff positions available, specifically in the areas of Finance, HR and project management. If you are interested in learning more about these opportunities please email me at sarah.mayer@globalcdh.org.

On a Jaxson note...I can hardly believe that he is 16 months already. He is doing so much now, so much so that I cannot keep up with tracking it all. He's walking, almost running, talking (he knows body parts, animals and their sounds, hot and cold, car, truck, choo choo train and names of family members) and growing well. He's back on the growth chart for his weight, which was obviously a concern. He was getting extra calories in his milk and added fats/calories in his diet. This strategy put him back on the chart. In general, he eats some things really well (bananas, strawberries, waffles, toast, pasta, sweet potatoes), but I'm working towards making sure his diet is more balanced.

We joined My Gym, which is a gym just for kids. He loves it and we love that he gets to interact with other kids his age. I was happy to find that they have hand sanitizer everywhere, so that put me a little at ease in terms of Jax getting sick from going there.

Health-wise Jaxson is doing great - we're loving our new pediatrician, as she's made sure that he's seeing the right specialists (like Gastro, Pulmonology, Children's Alliance, etc) and even though Jax doesn't have very many long term effects from CDH, she takes his medical history into consideration when evaluating him. Something the other pediatrician wasn't doing.

Also there are several CDH babies in the NICU or on the way, so please keep them in your thoughts/prayers.

A nugget of info that helped us...

When we were making the tough decision on where Jaxson would be born, a Canadian friend of ours sent us this study about how survival rates were more favorable at hospitals that saw a high volume of CDH cases. Here's the link to the study: http://www.jpedsurg.org/article/S0022-3468(04)00040-5/abstract.

Children's hospital here in Pittsburgh sees 12 CDH cases on average every year (as of 2008) and CHOP's number of CDH cases was around 45-50 when were were researching hospitals. CHOP's number may be different now, I don't know for sure. We had many reasons for choosing CHOP, but one was this info about high-volume vs low volume.

We asked all of the hospitals we researched: how many CDHers they treat a year, what is their survival rate, and what is their ECMO philosophy (this was a huge decision factor for us). Anyway, just wanted to share because I forgot about that particular study!

At home, resting

Everything with the surgery went well. The doctor was able to
pull the left testicle down from Jaxson's abdomen, so we don't have
to go back for a second surgery! Yeah!


Jaxson was a little trooper, woke up from the anesthia very well
(much better than I do) and so we were out there pretty quickly.
He's been resting and a little irritable, but mostly because he's
hungry. We can't feed in solids or milk for a little while
longer.


Thanks for the prayers!

In Surgery...

Hi All,

Today is Jaxson's orchidopexy (spelling?) surgery (for undescended testes). We arrived very early...6 am! Checking in went really fast and he was taken back to surgery around 7:45 am. One of his testes was difficult to find upon examination, so there is a slight chance they may have to bring down as much as possible and then tack it; then we would have to come back again for another surgery. We are praying that this is not the case though. It's been almost an hour, so we should be getting an update from the OR soon.

I'll post another update later on...

Thanks,
Sarah

Angel Ireland Rose

I came home this evening after a long car trip anxious to catch up on CDH blogs. I was very sad to read that Ireland Rose lost her battle against CDH. She fought bravely on ECMO for many days. Her parents, Mike and Chanda had to make a decision that no parent should ever have to make. Please keep the Brady family in your thoughts and prayers.

Proud to be a CDH parent

I just wanted to put up a post about how proud I am to be a part of a such an amazing community of CDH parents and all of those out there supporting CDH families deserve to be recognized as well.

I follow too many CDH blogs to count but each one is special to me. They are each unique, different, important and allow us to be a part of their CDH journey. I feverishly read them whenever I have a spare moment. I'm reading to find out how CDH children are doing, how their parents are coping, and I offer support where I can. I read their blog posts and then I read down the list of amazing supportive comments left by many other CDH parents. It just touches me to read these comments of support and hope because they are pure, sincere words from parents who know, who get it. I know how much I needed those comments when Jaxson was at his sickest. I hung onto every word someone wrote down for us, supporting us and lifting us up. It was an amazing part of our journey with Jaxson and it helped us immensely. It carried us on down days.

The CDH community is awesome and I'm so proud to be a part of it. Ok, I'm done gushing. I'd like to end with a request for you to please pray for Max (on ECMO), Ireland (On ECMO), Carter (CDHer recovering from open heart surgery), Gia (recently had Nissen surgery), MJ (resting post surgery) and I'm sure I'm missing some babes that need support so please just pray pray pray for CDHers everywhere!

Thank you,
Sarah

A documentary about CDH

So, I've been brewing this idea for some time and have finally started taking action to make it a reality. First let me be clear...I have no experience shooting a documentary! I hope to line up advisors, volunteers and folks with experience to help me make it a success.

I have immersed myself in many blogs, carepages, facebook pages, etc of other CDH families and their stories since we received our diagnosis. I feel connected to them as if I knew them personally although I've only met a few of them. Day in and day out I read their updates and cheer when something great happens, pray when something not so great happens and cry more often than not at what I can only describe as the most touching posts I've ever read.

I decided after Jaxson's Jog that I needed to continue to spread the word about CDH so that this birth defect and this amazing CDH community can be known to many instead of a few. I participated in Letters for CDH on July 15 and again I felt proud to be a part of such an amazing community. Praying for families daily and commenting on others' blogs is I suppose another way. But, the documentary is my next project.

I'm certainly afraid that I won't get this documentary right and I'm afraid it won't accomplish my goal of making CDH as well known as Cystic Fibrosis and Spina Bifida. However, I have to believe that it is possible. I hope to present information about the defect along with as many CDH stories and journeys as possible.

If you're a CDH family reading this post I need your help to make sure this documentary is great. If you would like to participate, please email me at sarahjmayer23@yahoo.com.

Also, I have started a Fundable page for donations toward the production costs. If you're interested in giving you can check it out at: http://www.fundable.com/groupactions/groupaction.2009-07-29.1606099984

Thank you!

Important post

It's been a while since my last post, but some important things are happening in the CDH community. First and foremost, there is a CDH family that needs your support and prayers as they are going through an extremely difficult time. Their daughter Avery has fought tooth and nail to beat CDH, but they have decided to take her off of all support and spend as many precious moments as possible with her. I know that many prayers and thoughts are already being sent their way, but I ask that you add yours to the list. I have been touched by their journey as have many others and I am truly hoping for a miracle.

The second thing I want to mention is a campaign to spread the word about CDH to the media. The project is called Letters for CDH and you can find out more at www.lettersforcdh.blogspot.com. Please support this effort if you're not already doing so. It's a pure and unbiased effort to get the word out about CDH.

And what post would be complete without an update about Jaxson. We had a rocky week last week with our first hospital visit since being in the NICU. Jaxson came down with a stomach virus that presented itself in an unorthodox way - no fever and no diarrhea. Given his complicated history, we of course feared bowel obstruction or worse re-herniation. After two ER visits, a 3 day hospital stay at the brand new Children's Hospital of Pittsburgh, 3 failed IV sticks, one successful head IV, many fluid infusions, an x-ray, ultrasound, blood work and an upper GI...Jaxson was given a clean bill of health and the diagnosis of stomach virus. He's finally on the mend, eating better, gaining back the pound and a half that he lost, and back to his happy boy self. It was scary, but I feel like we as parents acted quickly, paid attention to his sickness cues and remained cool and calm so we could focus on getting Jax healthy again.

I'll end with another plea to pray for Avery and her family. CDH may be life threatening, heart breaking and merciless at times, but it produces some amazing fighters. I am praying for a miracle tonight.

Jaxson's Jog

Hi all,
Just a quick update to let everyone know how the event went yesterday. We have over 50 race day entries adding to the almost 90 or so folks that had pre-registered for the race. With race registrations, the proceeds of the Chinese auction and the donations made directly to Global CDH making the total donation over $2500.

It was great to meet the founders of Global CDH who drove here all the way from New Jersey! We had a great time getting to know them and learning about their organization. Including Jaxson there were 5 CDH families present at the race. Meeting them and helping to share their story was a truly amazing experience.

I'm thrilled with the results of the first race and already looking forward to next year's race. I hope we can triple the registrations and continue to raise more awareness of CDH.

I'll be posting the pictures that our friend Kari of Eventum Photography took of the entire day. So, hopefully I'll get those up soon. Be sure to check them out at www.jaxsonsjog.com.
Happy Memorial Day weekend!!

Sincerely,The Mayers

Count down to Jaxson's Jog

I can't believe that Jaxson's Jog is only days away - May 23 is the big day! I'm so anxious for the big day to arrive. I am working on media attention this and next week and really hope that some local Pittsburgh stations and papers will pick up the story. It is so important to me that Jaxson's Jog spread the word about CDH.

I sent a news release this morning out through a free wire service called PRLog.org. Here's the link in case you're interested: http://www.prlog.org/10236499-jaxsons-jog-event-spreads-word-about-congenital-diaphragmatic-hernia-in-pittsburgh-pa.pdf

I'm also excited that we will have several CDH families present at the race. It will be so great to have them be a part of the effort to spread the word.

On a Jaxson note, he will be one year old on Tuesday, May 19! It's hard to believe it's been a whole year, but what an amazing year it has been. We are so lucky to have Jaxson with us and in such great health. I cherish every moment with him and am extremely blessed and proud to be his mama.

Last year at this time

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.

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!

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

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.

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.

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.