tag:blogger.com,1999:blog-74486524775605044622024-02-19T03:56:26.925-08:00Jaxson's CDH JourneyThis blog is a place for us (Jaxson's mom and dad) to share his CDH story. Our hope is that this blog will help other CDH families who just starting their journey.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-7448652477560504462.post-78597342063849451082011-01-17T12:03:00.000-08:002011-01-17T12:03:11.060-08:00Long Over Due Jaxson UpdateI haven't posted an update since July...ugh and sorry! I can say I've been busy and other such excuses, but bottom line I just haven't made time for this blog. I have new adventures, but I'll save those for later.<br />
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Jaxson is 2 years old, but only 5 months from his third birthday. He's up to so many new things - talking up a storm, trying to understand numbers, words, sounds, etc, helping mama in the kitchen, playing with his cars, trucks and animals and soo much more. He's discovered TV...not my favorite hobby of his, but it was inevitable. He's really into batman and superman. In my book, this makes perfect sense since he's a CDH super hero. See his favorite toy below...batman complete with bad guys and batmobile!<br />
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We did not have any medical issues or complications due to CDH in 2010,,,blessing! But, CDH is never far from our thoughts. I've been off the CDH radar lately, but I do try to keep on top of new CDH families that need our support. There is currently a family here in Pittsburgh going through a CDH journey. They have a blog that I encourage you to visit and offer words of support if you can. Visit there blog at http://rootingforramsey.blogspot.com/<br />
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As for those other adventures I mentioned at the top of this post...I am officially a full time entrepreneur! As of January 1, my role is as CEO of Infiniti Solutions, LLC. Please feel free to check out our rough website at http://www.infinitisolutionsinc.com. Infiniti Events, LLC is the event division of the company and it has been around since 2004. Behind the Scenes is the blog for Infiniti Events, so please check that out too! http://blog.infinitieventsinc.com.<br />
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I wish you all a happy and healthy 2011!Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com3tag:blogger.com,1999:blog-7448652477560504462.post-74126397847613215352010-07-02T07:11:00.000-07:002010-07-02T07:11:48.680-07:00Toy Story 3<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">My post frequency is starting to boil down to once per month, which I suppose is representative of schedule, of summertime commitments, etc. Speaking of summer, there are usually a few good kids movies released over the summer months. We're now on Toy Story 3 and Shrek 3, I probably saw the the first versions of those movies in the theater with my younger sisters. </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">In any case, yesterday Jaxson had a very late nap. He didn't wake up until 5:45 pm, when he would normally wake up at 3:30 or so! I figured I would have a wide awake child until around 11 pm. Eek, I'm used to having him in bed by 8:30 which allows me to do house stuff, go back to work (I work from home), or maybe just maybe read a book. My time essentially. </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I've been wanting Jaxson to experience the movies for a few months. He's not interested that in TV, much more into books and being outside, but I thought the lure of the big screen would be appealing! I loved going as a kid and into adulthood but can't even tell you the last movie I saw. So partly for selfish reasons, I thought even if I have to sit through numerous kids movies, it would be nice to go again. So, with a few hours to kill before the 11 pm bedtime, I took a chance on Toy Story 3. It was 6:50 pm when I had this brilliant idea, the movie started at 7:25 (15 minute drive from the house) and we hadn't eaten dinner yet. My parenting skills may be questioned here, but I put some turkey and cheese in a baggy, put on our shoes and away we went!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">From the moment we got into the ticket line, I could tell Jaxson was going to dig this. He stood beside me, me holding his little hand and him with a big smile and big eyes looking around at everything. The movie posters, bright lights, the teens hanging out everywhere...just the right amount of chaos and it was all new for him. Then with our popcorn in hand, we got in line to go into the theater. I could hear the 'ah's' from the people behind us and I smiled big. I thought how many other milestones we have to look forward to and savor. </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I gave Jax his ticket to hand to the ticket taker and there was a confused pause as to what he was supposed to do with this piece of paper. I explained, Jax obliged and then there were some more 'ah's' from the folks behind us. Me, the proud parent announced, "it's his first movie!" More ah's. </span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">So, off we went into the theater to pick our seats. I was placing bets with myself on how far we would get into the movie before he wanted to leave. He watches about 5-10 minutes of any TV show/movie before he's bored and onto the next thing. I figured I had a good 15-20 minutes maybe. Well, I am happy to report he made it through the entire movie loving every second of it and me loving every second too. We talked about various things that happened in the movie on the car ride home, when we got home, and when he woke up this morning. I'm sure this will be a fun topic for days to come!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">Not the best picture, but I will cherish it! This whole experience has me excited for what's next for him and how many of these milestones Barry and I get to be a part of before Jax goes off to college!</span><br />
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<span class="Apple-style-span" style="font-family: Arial, Helvetica, sans-serif;">I hope everyone has a safe, fun and happy July 4th weekend!</span>Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-17670082761180583642010-05-14T06:35:00.000-07:002010-05-14T06:35:04.276-07:00FlashbackOk, I know it's been way too long since I have posted. I find myself busier than usual for me and blogging has fallen down on the priority scale several notches. I'm more likely these days to post something on Facebook than write a blog post, mostly because it's quicker. Then I realized, that my blog post does not have to be long, well thought out or deeply poetic...I can just write.<br />
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So, here goes. I had a flashback this morning and not the kind my parents have about the 70s. This one was of me getting away from the NICU to do laundry at my cousin Lynda's house during our stay in Philly. Jaxson was probably 3 weeks old and I did not feel like doing his laundry in the hospital that day. As I loaded the washing machine, I remember thinking how cute his little clothes were, how amazing they smelled and how weird it was to be doing laundry at someone else's house, while my son lay in a NICU crib. We were not at our house, in our laundry room with a newborn upstairs.<br />
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In that moment I became pretty angry. All of the feelings about why me, why my son, why CDH just crashed down. I let myself get upset, which was something I didn't want to exhibit while at the hospital. I wanted to be the strong mommy, there for her son, not afraid. And then just as quickly as the anger had hit me, the feelings went away and I was fine. I folded the few onesies, button down jammies and blankets that we had for him and made the drive back to the NICU to be with Jaxson. I felt better, but still wanted to be home with my son.<br />
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That time seems so far away now. Jaxson will turn two next week and when I look at him today I see an amazingly healthy, boisterous, curious little boy growing in leaps in bounds right before my eyes. He says three words in a row now and he gets a little air when he jumps. And I'm not angry anymore about why me, why my son, why CDH. It's a journey we were handed for a reason. Reason being to share our story, to help other families dealing with CDH and to be the best parents we can be to Jaxson.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com2tag:blogger.com,1999:blog-7448652477560504462.post-5021856899034830982010-02-23T17:41:00.000-08:002010-02-23T17:41:58.576-08:00A Snow-filled WinterWinter in Pittsburgh is usually cold and somewhat snowy, but this year it's been excessive as the snow has hit so many parts of the East Coast and Midwest. Jaxson has loved seeing the snow and saying 'snow' and cold although we haven't taken him out in it much. I am probably being overly cautious, but we've been so lucky at how healthy and cold-free he's been, I really don't want to push our luck.<br />
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His vocab is increasing at such an alarming rate...he heard me say step stool yesterday and he's been walking around saying it ever since. He can say some pretty complex words including chocolate...much to our chagrin! And on Friday he had his 21 month check up and I mentioned in the car along the way that we were heading to see Dr. Leslie and wouldn't you know he started saying Doctor Leslie. Typing these words does not do them justice, the way he says them is just awesome, precious really!<br />
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So, I'm happy to report that he is at the 15% percentile for weight. He's never gotten over 10th, so we are happy about that! He's in the 50th for height.<br />
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We started going to a new kids gym last week and it's been great for him. He loves to climb, jump, socialize with the other kids, etc. He climbed on the rock wall today and you would think he's been doing it all his life. The folks at the gym were quite shocked at his development level for his age. We have him in the 2 year old class and he can pretty much hold his own with them.<br />
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We've had a few fun visits this month - cousin Lynda stopped by the first week of February to see Jax (although Barry and I were in Cabo at the time so we missed her), Perry jetted in from Seattle for a quick visit over Valentine's weekend, and my dad (or Pop Pop as Jax refers to him) stopped by for a few hours in between business meetings.<br />
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I'm sure there is much more to report on, but overall he's doing great and we are so blessed and thankful. Also, if you're interested Jaxson's Jog 2010 will be held on May 22 at North Park in Allison Park, PA. All the latest info is online at www.jaxsonsjog.com or you can join our Facebook page at www.facebook.com/jaxsonsjog.<br />
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Please keep all of the CDH babies on the way and in the NICU in your thoughts/prayers.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-34423140312386500892010-01-04T18:12:00.000-08:002010-01-04T18:12:57.761-08:00It's 2010 and still so many people don't know what CDH isIt's been quite a while since my last post. I think about posting often, but rarely feel I have anything interesting enough to share with the CDH world. I try to stay current with all of the many CDH families I follow. Hundreds of families in fact. By following their stories, I'm still a part of the CDH community somehow. Reading about the struggle, the heartache and the all too many CDH warriors that have earned wings this year, it's hard to write about how our CDHer is defying his odds, his less than 50% chance of survival odds. <br />
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Our son was diagnosed with CDH at 20 weeks. We were given bleak if any hope that he would survive the third trimester. Everything that was supposed to be "down" below his diaphragm was up in the chest...how in the world could that be? It was as if I was stuck in some weird sci-fi movie. I kept telling myself, "this is a dream." We were being prepared by our medical professionals for the worst, for the death of our son. It was opposite of what was supposed to be happening. They were supposed to be preparing us for birth, the choice between meds/no meds and talking about 10 fingers, 10 toes, etc. We were supposed to be sharing our ultrasound images with family and talking about that little fuzz being hair and wondering if he would have my eyes and Barry's chin. But instead we were explaining to family members where the organs were on the image and how this was not a normal picture. It was not a dream, it was happening and we had to get on board and make decisions that ultimately I believe saved our son's life. <br />
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This was 2 years ago now and it seems like 10 years ago. It was so raw, so real at the time. I remember crying privately a lot but putting on a brave face in public. I remember looking at books that chronicled the development of a fetus and getting so mad that there wasn't a book like this for CDH parents with images of what their child looked like, organs out of place but happily floating around in uterine bliss. <br />
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We are ok, we lived this ordeal and our son survived it. He is a living breathing miracle walking around for everyone to see. I am never going to be able to say thank you enough for my miracle and I'm blessed to have a miracle in my lifetime. <br />
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Now to the future of CDH...what I see is a world where all CDH parents have a support system, education, resources, and tools to make the best decisions about care. I see a world where research for CDH is happening all over the world not just in select hospitals. I see a world where my son doesn't share a scare with thousands of other CDHers. I see a world where CDH is synonymous with Cystic Fibrosis, with Spina Bifida, with Leukemia. I see a world where CDH doesn't happen anymore because we identify the root cause. <br />
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I know there are many CDH parents out there that are making a difference. Many of them have lost babies and many have survivors, but regardless they are committed to changing the face of CDH. The CDH community can work together to make this happen and I hope 2010 a year of real change for CDH.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com4tag:blogger.com,1999:blog-7448652477560504462.post-58927633293248780612009-09-23T06:49:00.000-07:002009-09-23T06:50:29.996-07:00Calling all volunteers...Hi all,<br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Also there are several CDH babies in the NICU or on the way, so please keep them in your thoughts/prayers.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com2tag:blogger.com,1999:blog-7448652477560504462.post-43578718114271597932009-09-14T10:27:00.001-07:002009-09-14T10:35:20.563-07:00A 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.<br /><br />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. <br /><br />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!Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com1tag:blogger.com,1999:blog-7448652477560504462.post-40685094873220804862009-09-03T11:18:00.001-07:002009-09-03T11:18:51.665-07:00At home, restingEverything with the surgery went well. The doctor was able to<br />pull the left testicle down from Jaxson's abdomen, so we don't have<br />to go back for a second surgery! Yeah!<br /><br /><br />Jaxson was a little trooper, woke up from the anesthia very well<br />(much better than I do) and so we were out there pretty quickly.<br />He's been resting and a little irritable, but mostly because he's<br />hungry. We can't feed in solids or milk for a little while<br />longer.<br /><br /><br />Thanks for the prayers!Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com1tag:blogger.com,1999:blog-7448652477560504462.post-88476414490400921102009-09-03T05:44:00.001-07:002009-09-03T05:44:57.126-07:00In Surgery...Hi All,<br /><br />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.<br /><br />I'll post another update later on...<br /><br />Thanks,<br />SarahSarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com1tag:blogger.com,1999:blog-7448652477560504462.post-85529743582276114462009-08-30T18:41:00.000-07:002009-08-30T18:52:14.649-07:00Angel Ireland RoseI 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.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-89789674005120017612009-08-26T18:45:00.000-07:002009-08-26T19:30:38.402-07:00Proud to be a CDH parentI 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.<br /><br />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.<br /><br />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!<br /><br />Thank you,<br />SarahSarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-83398955452167796662009-07-30T05:49:00.000-07:002009-07-30T06:20:00.330-07:00A documentary about CDHSo, 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. <br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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: <a href="http://www.fundable.com/groupactions/groupaction.2009-07-29.1606099984">http://www.fundable.com/groupactions/groupaction.2009-07-29.1606099984</a><br /><br />Thank you!Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-49668542081372372882009-07-14T17:58:00.000-07:002009-07-14T18:11:02.744-07:00Important postIt'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. <br /><br />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 <a href="http://www.lettersforcdh.blogspot.com/">www.lettersforcdh.blogspot.com</a>. 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.<br /><br />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. <br /><br />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.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-91742059058417853692009-05-24T18:11:00.000-07:002009-05-24T18:12:06.664-07:00Jaxson's JogHi all,<br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br />Happy Memorial Day weekend!!<br /><br />Sincerely,The MayersSarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com1tag:blogger.com,1999:blog-7448652477560504462.post-43132519132498412252009-05-14T08:25:00.000-07:002009-05-14T08:31:45.144-07:00Count down to Jaxson's JogI 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. <br /><br />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: <a href="http://www.prlog.org/10236499-jaxsons-jog-event-spreads-word-about-congenital-diaphragmatic-hernia-in-pittsburgh-pa.pdf">http://www.prlog.org/10236499-jaxsons-jog-event-spreads-word-about-congenital-diaphragmatic-hernia-in-pittsburgh-pa.pdf</a><br /><br />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. <br /><br />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.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com1tag:blogger.com,1999:blog-7448652477560504462.post-17169588410440155902009-04-27T06:31:00.000-07:002009-04-27T07:03:19.617-07:00Last year at this timeLast 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? <br /><br />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. <br /><br />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.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-86054963734928740452009-04-23T18:05:00.000-07:002009-04-23T18:11:33.503-07:00Projectile vomit is no funJax'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. <br /><br />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. <br /><br />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!Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com1tag:blogger.com,1999:blog-7448652477560504462.post-8503378013100943512009-04-22T12:29:00.001-07:002009-04-22T12:36:23.421-07:00Letters for CDHI'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: <a href="http://lettersforcdh.blogspot.com/">http://lettersforcdh.blogspot.com/</a><br /><br /><span style="color:#ff6600;">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.<br /><br />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.<br /><br />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!<br /><br />Sarah Mayer<br />Proud Mama to Jaxson Isaac, born on 5-19-08 with LCDH.<br /></span><a href="mailto:sarahjmayer23@yahoo.com"><span style="color:#ff6600;">sarahjmayer23@yahoo.com</span></a><span style="color:#ff6600;"><br /></span><a href="http://cdhsurvivorjaxson.blogspot.com/"><span style="color:#ff6600;">http://cdhsurvivorjaxson.blogspot.com</span></a><span style="color:#ff6600;"><br />Carepage: TheMayers</span>Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com2tag:blogger.com,1999:blog-7448652477560504462.post-51892642899616557082009-04-21T07:31:00.000-07:002009-04-21T07:52:39.090-07:00The CDH realityThe hard reality of <span class="blsp-spelling-error" id="SPELLING_ERROR_0">CDH</span> is that 50% of these children don't survive. A baby that survives birth with <span class="blsp-spelling-error" id="SPELLING_ERROR_1">CDH</span> 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. <br /><br />I read and follow as much as I can about other families struggling with, coping with, and overcoming <span class="blsp-spelling-error" id="SPELLING_ERROR_2">CDH</span>. Inevitably, I read stories of <span class="blsp-spelling-error" id="SPELLING_ERROR_3">CDH</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_4">CDH</span>. <br /><br />I think about <span class="blsp-spelling-error" id="SPELLING_ERROR_5">CDH</span> <span class="blsp-spelling-error" id="SPELLING_ERROR_6">everyday</span>. I think about ways to spread the word. I think about ways to offer comfort to families dealing with the pain and loss of <span class="blsp-spelling-error" id="SPELLING_ERROR_7">CDH</span>. I think about ways to provide support to families that are just learning about <span class="blsp-spelling-error" id="SPELLING_ERROR_8">CDH</span>. But I know that thinking is just the start of making a real change in getting the word out about <span class="blsp-spelling-error" id="SPELLING_ERROR_9">CDH</span>.<br /><br />Today the <span class="blsp-spelling-error" id="SPELLING_ERROR_10">CDH</span> community is saddened by the loss of Angel <span class="blsp-spelling-error" id="SPELLING_ERROR_11">Kaden</span> Alex <span class="blsp-spelling-error" id="SPELLING_ERROR_12">Kuehl</span>. He fought for 17 days and is now in heaven with many other <span class="blsp-spelling-error" id="SPELLING_ERROR_13">CDH</span> 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.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com2tag:blogger.com,1999:blog-7448652477560504462.post-39744747863915025482009-04-19T08:55:00.000-07:002009-04-19T09:09:05.493-07:00New 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Jaxson</span> had <span class="blsp-spelling-error" id="SPELLING_ERROR_1">CDH</span>. The days after that news were slow and long. We went back two days after that first ultrasound for an <span class="blsp-spelling-error" id="SPELLING_ERROR_2">amnio</span> to rule out other possible complications. Waiting for those results was <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">excruciating</span>. The days went by and we were trying to stay busy and learn as much as we could about <span class="blsp-spelling-error" id="SPELLING_ERROR_4">CDH</span>. 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.<br /><br />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.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0tag:blogger.com,1999:blog-7448652477560504462.post-5437210715347640462009-04-18T18:32:00.001-07:002009-04-21T18:25:10.537-07:00Starting at the beginningJanuary 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.<br /><br />"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!"<br /><br />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.<br /><br />His words exactly, "I do not have good news for you." That was the beginning of our CDH journey.Sarah and Barry Mayerhttp://www.blogger.com/profile/03733107545138384618noreply@blogger.com0