tag:blogger.com,1999:blog-34041962917524272532024-02-20T05:09:42.044-08:00Step by Step CleftUnknownnoreply@blogger.comBlogger15125tag:blogger.com,1999:blog-3404196291752427253.post-70030336011075032962030-02-06T14:24:00.000-08:002012-11-18T19:40:31.981-08:00New To Step By Step? Start HERE!Welcome! It is my hope that Step by Step Cleft will educate, inspire, and uplift all who come across it! This blog is meant to be read from the beginning, or oldest post to the most recent post. So for you newbies, START HERE by clicking through the posts one at a time in order. And please, leave a comment! Or just vote! (to the right...:) I love knowing I'm not just sending this out into cyberspace, and a real person ACTUALLY might read this blog!;) <br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/01/i-think-this-baby-has-cleft-lip.html">Post One</a></span><br />
"I think this baby has a cleft lip..."<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/02/honey-im-home.html">Post Two</a></span><br />
"Honey, I'm home..."<br />
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<a href="http://stepbystepcleft.blogspot.com/2011/01/normal-0-i-love-being-prego.html"><span style="color: red;"><span style="color: #bf9000;">Post Three</span> </span></a><br />
"Being "okay" with it."<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/02/research.html">Post Four</a></span><br />
"Research"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/02/finding-doctor.html">Post Five</a></span><br />
"Finding a Doctor"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/04/birth-day.html">Post Six</a></span><br />
"Birth Day"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/06/feeding.html">Post Seven</a></span><br />
"Feeding"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/08/they-saysurgery-one.html">Post Eight</a></span><br />
"They say..." Surgery One<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2011/10/honeycuffs-and-mirical-blankets.html">Post Nine</a></span><br />
"Honeycuffs and Miracle Blankets"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2012/01/smile.html">Post Ten</a></span><br />
"Smile"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2012/01/taping-and-ear-tubes.html">Post Eleven</a></span><br />
"Taping and Ear Tubes"<br />
<span style="color: red;"><br /></span>
<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2012/01/id-like-one-face-sect-damee-please.html">Post Twelve</a></span><br />
"I'd like one Face-sect-damee, Please!"<br />
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<span style="color: red;"><a href="http://stepbystepcleft.blogspot.com/2012/04/rykers-ring.html">Post Thirteen</a> </span><br />
"Rykers Ring"<br />
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<a href="http://stepbystepcleft.blogspot.com/2012/11/save-best-for-last.html"><span style="color: #bf9000;">Post Fourteen</span></a> <br />
"Save the Best For Last"<br />
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For all my old friends, check out the latest post BELOW! But make sure you haven't missed one while you were away!<br />
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And PLEASE, PLEASE, PLEASE, if you come across a blog, educational site, cleft product, or anything else that you love...Share! Tell me in a comment and I will post a link to all these little web treasures! Or if you have a question, feel free to ask! I will do my best to answer! Also, keep in mind that because EVERY cleft is different, there are MANY different methods for repair, and MANY different oppinions about which is best. This is just one way. One method, and one doctors preferred plan of attack for our unique cleft. You and your journey will vary, but one thing we can all share is a similar emotional journey...and the fact that our little monkeys came into this world with EXTRA big smiles!;)</div>
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Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3404196291752427253.post-40517169729187964092012-11-18T19:23:00.001-08:002012-11-18T19:23:45.262-08:00Save the Best for LastAfter Rykers lip and nose repair, we had 3 more surgeries, totaling 5, before he was a one and a 1/2. One easy one for ear tubes, and two rough ones to repair his soft palate. Since the day he was born, it seemed like we were either recovering from a surgery, or gearing up for one . I kept holding on to the idea that after his second soft palate repair, when he was a year and a half, we would have a 2 year break. Ryker wouldn't need another surgery until he was 4! I seriously felt like we were in pure survival mode, but I knew it would be coming to an end. At least for a while, and I clung to that. When Ryker turned one, we not only celebrated his birthday, we celebrated a tremendous year survived. Ryker had been a champion through it all.<br />
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Rykers One Year Old Pictures- Unedited of course:)<br />
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Don't you just want to squish him!?<br />
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When Ryker was 18 Months old he had surgery for the completion of his soft palate repair.We would be staying overnight, and due to my now expertise at hospital stays, I mentally and physically prepared. As ready as I was, I never could have guessed the rollercoster we were about to get on.<br />
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We had never had a better experience with a surgery as we did that time. Not only did we not get bumped for surgery time, prolonging a very empty toddler tummy, but they actually called and had us come EARLY! Nice! Check in was a breeze, and surgery was a short hour. In recovery, Ryker just slept. He has NEVER just SLEPT. Normally he is flailing about, pulling out IV's, screaming, causing major stress and worry on himself and us. Totally understandable, but still. So when he just SLEPT in my arms, I was in HEAVEN!<br />
They took us to our room. A PRIVATE room! Sweet! And Ryker continued to sleep. Having been all prepared for the worst, we were almost board with the extremely calm situation. How nice! Later in the night when Ryker did start to get fussy, they offered to bring in a FULL size hospital bed so he could sleep in my arms while I slept. WHAT?! You can do that?! Why the hell had no one offered this luxury to me before?<br />
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Note: Will DEMAND a full size bed from now on, and if you are going through a similar adventure, Demand that you DEMAND one from the very beginning! It made everything WAY easier and doable.<br />
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We were riding high on a rather not so sucky hospital experience until we got a call from our neighbor first thing the following morning. She had gone to let our dogs out while we were at the hospital, when she found Max, our 10 year old Boxer, lying on the floor in bad shape. She had no idea what was wrong, but it was clear he was dying. We were an hour away from home and still did not have the "all clear" to be discharged from the hospital with Ryker.<br />
It was awful. Max was the dog we had had our whole marriage. He was our first "child," and the sweetest most loving dog ever. Knowing he was dying all alone without us, was killing me. As soon as we could we rushed home only to pass Ryker off to my Mom, pick Max up from where he lay in extremely bad shape, and rush to the animal Hospital.<br />
He died with us by his side within minutes of getting to the vet.<br />
Apparently he had a tumor somewhere inside that had ruptured. Sadly, very common for boxers, there was nothing we could have done. I know he waited for us.Waited for us to say goodby. This was such a major blow on a day where we were already running on empty emotionally. Honestly, it was a rough day, but we survived it.<br />
As for Rykers recovery, it was the easiest and fastest he had ever had, and we were able to quickly return back to normal. God threw us a bone on this one. Pun intended.<br />
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I know that story was kind of a buzz kill, but as awful as the timing was, it still was the beginning of a long awaited, much deserved break. We emerged from our fog of surgeries and Doctors, and ALL the fun tid-bits that come with them, and entered a new normal. And I cherish that "normal." I felt like I could breath again. We played and worked and played some more, and Ryker no longer sneezed concerningly large amounts of food and snot out of his nose. That alone was simply fantastic! His repair had officially moved into the "mostly done" section. Yay! We have at least 2 more surgeries to go. One when he is 4 for his hard palate repair, and one when he is 6 for his gum line repair. After having 5 in just over a year, we can totally do two in a 5 year stretch! Fagetta 'bout it!<br />
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Ryker at two years old with the family who loves him. And yes, I am TOTALLY showing off, but I AM his Mother and he IS absolutely darling!<br />
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(Photos untouched and totally real...told you our surgeon rocks!)<br />
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<br />Unknownnoreply@blogger.com9tag:blogger.com,1999:blog-3404196291752427253.post-52608861990890701822012-04-22T19:05:00.001-07:002012-04-22T19:05:31.587-07:00Rykers Ring<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNAj9MjUEmwFYTP9nXqw1Qc9n5Z-jatr9dlW9NmTbYuhdzdmRJns8kMluhk-4z8mdECb1ITBdSLciqtCrPHjB-s-rhLMS_5ogkmnMdy03Ta-x7fCNQKA1Erm7sVyDsVtGTTab41lYBi5WZ/s1600/Ryker+birth+001.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5525738852298057762" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNAj9MjUEmwFYTP9nXqw1Qc9n5Z-jatr9dlW9NmTbYuhdzdmRJns8kMluhk-4z8mdECb1ITBdSLciqtCrPHjB-s-rhLMS_5ogkmnMdy03Ta-x7fCNQKA1Erm7sVyDsVtGTTab41lYBi5WZ/s400/Ryker+birth+001.jpg" style="cursor: hand; display: block; height: 267px; margin: 0px auto 10px; text-align: center; width: 400px;" /></a> We started a tradition in our family when I had my first baby Chloe. I have babies, I get jewelery. I think this should be a law or something for all women. I wanted to have something to pass on to my children one day, that until that time, I could enjoy. With Chloe I received amazing diamond earrings in the hospital, diamonds being her birthstone. I almost never take them out. I love having a little memento of her and the day she came into our lives. With Ryker I wanted something to represent his uniqueness and our journey with him. I looked and looked and came across this ring. It was perfect. I know its SUPER cheesy, but I love how the ring isn't "complete" yet it is absolutely stunning. Just like Ryker, with his cleft and all, he's beautiful. This ring is super precious to me and I smile every time I look at it. The stone is a blue Sapphire, his birthstone. This light doesn't do it justice, but the stone is dark and reflects bright blue light. It's lovely and so incredibly special to me, just like my little man Ryker.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm3qY0_HI51RT_vvnx59F3bchWeHnxc-RTNFeRc1pFwYpeolXGS3vIoOjepxL9JJQaXJyrBnRrgjacUKA3gEmaLhUF3hL8M6x9vm2T2TNvSB-PFS1-lRWBp5_EA9KH3lJXfXnCqMpdP62L/s1600/Ryker+birth+007.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5525738847754332754" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm3qY0_HI51RT_vvnx59F3bchWeHnxc-RTNFeRc1pFwYpeolXGS3vIoOjepxL9JJQaXJyrBnRrgjacUKA3gEmaLhUF3hL8M6x9vm2T2TNvSB-PFS1-lRWBp5_EA9KH3lJXfXnCqMpdP62L/s400/Ryker+birth+007.jpg" style="cursor: hand; display: block; height: 267px; margin: 0px auto 10px; text-align: center; width: 400px;" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh69xuTF5xqkcf-XefCJ1BDfJVns18QsTWkgTuJhL_UNAU8aJSqg-BLb6uPEw31rJZ-3V5LcphEcG-YMumSnsXvfpExFAz1k60frw2U5bi07CUWeLTSKQtLXkrdrFoQNsCXDNLYSpglRMbL/s1600/Ryker+birth+005.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5525738442405016130" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh69xuTF5xqkcf-XefCJ1BDfJVns18QsTWkgTuJhL_UNAU8aJSqg-BLb6uPEw31rJZ-3V5LcphEcG-YMumSnsXvfpExFAz1k60frw2U5bi07CUWeLTSKQtLXkrdrFoQNsCXDNLYSpglRMbL/s400/Ryker+birth+005.jpg" style="cursor: hand; display: block; height: 267px; margin: 0px auto 10px; text-align: center; width: 400px;" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglrKCbmc1kZwfnYw4Zbl05JX7W7dLhww6FK9Dg7Q1h3AVoOCxZ47Ph9SJBkX1mdx6QZUhF-_NcGmfYgAqO7-VMG8gWpjEkAKFrQEQKpqYuAG4jk_xkzYrDPB9kWuUvjtVNWndT7TFJN3zf/s1600/Ryker+birth+009.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5525738441474840690" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglrKCbmc1kZwfnYw4Zbl05JX7W7dLhww6FK9Dg7Q1h3AVoOCxZ47Ph9SJBkX1mdx6QZUhF-_NcGmfYgAqO7-VMG8gWpjEkAKFrQEQKpqYuAG4jk_xkzYrDPB9kWuUvjtVNWndT7TFJN3zf/s400/Ryker+birth+009.jpg" style="cursor: hand; display: block; height: 267px; margin: 0px auto 10px; text-align: center; width: 400px;" /></a><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBnyX3lv8szVIxhoiFmd_ucMP7-S2GLdd1-KTFACNsdIlvCF0KeAlhyCY4xA6BAb4tl49eH_mQe8AKkivjSHa8gzsJcjU4fFVMtak6d8zLCRR-zGVwD26KsGidVIgPsS_3OVOLVdJ55Yyh/s1600/Ryker+birth+011.jpg"><img alt="" border="0" id="BLOGGER_PHOTO_ID_5525738428842914562" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBnyX3lv8szVIxhoiFmd_ucMP7-S2GLdd1-KTFACNsdIlvCF0KeAlhyCY4xA6BAb4tl49eH_mQe8AKkivjSHa8gzsJcjU4fFVMtak6d8zLCRR-zGVwD26KsGidVIgPsS_3OVOLVdJ55Yyh/s400/Ryker+birth+011.jpg" style="cursor: hand; display: block; height: 267px; margin: 0px auto 10px; text-align: center; width: 400px;" /></a> Thanks to my hubby for indulging me in my silly sentimental rampages.</div>
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</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3404196291752427253.post-54569330000275095842012-01-09T20:29:00.000-08:002012-01-09T21:43:28.809-08:00I'd like one Face-sect-damee, Please!This was the post I did for my family blog about a week post surgery. Again, I didn't give them all the nitty gritty details you kids are going to get, but its a good starting place. Following the post is the good stuff!<br /><br /><br />Two Weeks before Rykers surgery we started taping his face to prep the skin. It kind of gave us a seek peek at what the final results might be. He really didn't like it, and it was a major pain, but we did what we were told, and hopefully it paid off.<br />The morning of the surgery we had planned to be the first ones in surgery. Meaning that we would need to stop feeding Ryker at 3AM, get up at 4AM, leave by 5AM, check in by 6AM, and be in surgery by 7AM. Well, the best laid plans... This is what actually happened. I was a nut job the whole day before, so when I got a call informing me that Ryker had been bumped to the second surgery meaning the ear/nose and thought Doctor that was supposed to put Rykers ear tubes in at the same time as his other surgery would no longer be able to, due to the time shift, I was an even bigger mess. Then first thing in the morning we got another call. We were bumped again. They predicted his surgery time would now be 3 PM. 8 hours later then planed, which is a really big deal when your 3months old and STARVING! We finally got the call and we headed for the hospital.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTomfTSlE9of9CBq7D9ARybnFPV1pc7LA2bN8NgKRQOKCthO4mPRin7yUWySfht14Zpv_EH5Fs3aHhcSXflcbWZY6FON5jkPlU7y9LA1T_SyOmfnoQbNrWpoPma9MURYIi8XQQPggtIo4u/s1600/Jan+11+040+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560318923065026210" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 289px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTomfTSlE9of9CBq7D9ARybnFPV1pc7LA2bN8NgKRQOKCthO4mPRin7yUWySfht14Zpv_EH5Fs3aHhcSXflcbWZY6FON5jkPlU7y9LA1T_SyOmfnoQbNrWpoPma9MURYIi8XQQPggtIo4u/s400/Jan+11+040+edd+surg.jpg" border="0" /></a> We got all checked in and Ryker was prepped. He had this darling onesie on from my Grandma. It had police cars and ambulances and hospitals. Perfect attire for the event! We changed him into the tiniest hospital gown I have ever seen, and we were ready!<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRQ-icXo_ciatWvKAzqZKEBNDmLNGgL2-8jeHIGeYGUR4bcwc8AalOOrlMsSzuMU9MpfiEaG2tdln8auIRhFRKmW-b0ZUH-Stf_tJBUeWmGPKuPd8AR-qp4-sUMJHTRRS-Tz75FpxZdmqw/s1600/Jan+11+042+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560318917033073330" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 322px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgRQ-icXo_ciatWvKAzqZKEBNDmLNGgL2-8jeHIGeYGUR4bcwc8AalOOrlMsSzuMU9MpfiEaG2tdln8auIRhFRKmW-b0ZUH-Stf_tJBUeWmGPKuPd8AR-qp4-sUMJHTRRS-Tz75FpxZdmqw/s400/Jan+11+042+edd+surg.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYvSD2JiCHqpiBGPnZ0dOizd06-wIb_Cc7riSpQw4_gW7rR1kASOzQdwbpcd51p1UCbu5vjpZSehIRLJbkKupmKuyuNSg75RXcmTBTJISsi7Mj0knlZWCsDbCFXgw2Ylt7tkLwwwEFTsdG/s1600/Jan+11+045+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560318446436183058" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 302px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhYvSD2JiCHqpiBGPnZ0dOizd06-wIb_Cc7riSpQw4_gW7rR1kASOzQdwbpcd51p1UCbu5vjpZSehIRLJbkKupmKuyuNSg75RXcmTBTJISsi7Mj0knlZWCsDbCFXgw2Ylt7tkLwwwEFTsdG/s400/Jan+11+045+edd+surg.jpg" border="0" /></a><br /><div><img id="BLOGGER_PHOTO_ID_5560318438181943202" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 310px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQoj31eump5EkGsyeJCXyE7r1TQOHAPmskGzKkxMUdIjAT5SIoYbjVEPGo4EiAfXU4S3tvJsw5-ZCIjwgpO0DhdS05_H7uRsC8cakSi92tqOpM0PUDyS_yVjGonqF3czH-frdKkujEI6qF/s400/Jan+11+061+edd+surg.jpg" border="0" />I was a wreak. I hadn't really slept. I got up super early, and I was about to surrender my little man. It was so extremely bitter sweet. Not the best Kodak moment of my life. This was the last I saw Ryker until a torturous 2 hours later.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDZjruaQpzcPLv9OaZXicwLc9ttjpp2o3yh1YUiH-xyG2ZntYC5mwpXhNLEaUcZ9c1NKuM152BjO78zBseqfu1Tv36_qQIcO2bguQ0eq-L97aMg1xG4z1l_uOvVvQGeBYkKgedDEY6gVPK/s1600/Jan+11+068+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560318432537542274" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 329px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDZjruaQpzcPLv9OaZXicwLc9ttjpp2o3yh1YUiH-xyG2ZntYC5mwpXhNLEaUcZ9c1NKuM152BjO78zBseqfu1Tv36_qQIcO2bguQ0eq-L97aMg1xG4z1l_uOvVvQGeBYkKgedDEY6gVPK/s400/Jan+11+068+edd+surg.jpg" border="0" /></a> Finally!!! He was done and back safe in my arms. The Surgery went perfect! The nurse wanted me to put him in his bed to move him to his recovery room. I refused. She didn't like me so much after that. Too bad.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRGGtDE_rds7Fw9BCjaYWGpK9tGO3_mvOZA1J_SDDBdzQMTgKMTZOXe6stapGXf0B9AIdxaSTn3KZbQuL3jxNFvFWxKSxRlgwY0u5efYt5iISSXE0zVKZYGh2f4Mdh2pdCRDekFpJOMInC/s1600/Jan+11+069+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560317909447848226" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 322px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRGGtDE_rds7Fw9BCjaYWGpK9tGO3_mvOZA1J_SDDBdzQMTgKMTZOXe6stapGXf0B9AIdxaSTn3KZbQuL3jxNFvFWxKSxRlgwY0u5efYt5iISSXE0zVKZYGh2f4Mdh2pdCRDekFpJOMInC/s400/Jan+11+069+edd+surg.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoNBVoJtz5Fyh5qSd3-IOkMFdbxI8AgRCET-LAD3lHvsvshCsFa8J7M70ZfLkVt51sW85jUdRw0CwnzsKeIz3f7GyypSWmwSBwKlIUGrCIy18WL7gAXZw1EnEs31-4CItsIPM7O147Uqrl/s1600/Jan+11+071+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560317901761209426" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 292px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoNBVoJtz5Fyh5qSd3-IOkMFdbxI8AgRCET-LAD3lHvsvshCsFa8J7M70ZfLkVt51sW85jUdRw0CwnzsKeIz3f7GyypSWmwSBwKlIUGrCIy18WL7gAXZw1EnEs31-4CItsIPM7O147Uqrl/s400/Jan+11+071+edd+surg.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCG403r3DQNBlER2G_YzNo4xjtWrQxTDFgxWp8pulIVDJAbtKED0m6D5ijlzEgNflJXx3RWWRF5DsrCQFXSKpOVTdsHuHsS4j-pB7zN13qUyx4Jwq5XtNRffQDlbqr5j87sZHXv2tp3-S/s1600/Jan+11+074+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560317423362527138" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 384px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEipCG403r3DQNBlER2G_YzNo4xjtWrQxTDFgxWp8pulIVDJAbtKED0m6D5ijlzEgNflJXx3RWWRF5DsrCQFXSKpOVTdsHuHsS4j-pB7zN13qUyx4Jwq5XtNRffQDlbqr5j87sZHXv2tp3-S/s400/Jan+11+074+edd+surg.jpg" border="0" /></a>Ryker did as good as you can expect anyone to do after being hit by a Mac truck. Me and Allan on the other hand, did as good as any parent watching there child be hit by a Mac truck, would do<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhArpLy9hHMf29s8ITs6xzzsqy2c-ttPXj2QqU94sPAVuIhZ7cHy5dwVRQTkzaN4wl8Owmw2jeMelNh6Ya0Xp1X8iq4fVi_DNcr8pqKmoYuD-dNaZzXQ1WyqCTbCXvjVT-lqzQJWFaeES41/s1600/Jan+11+075+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560317416851560978" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhArpLy9hHMf29s8ITs6xzzsqy2c-ttPXj2QqU94sPAVuIhZ7cHy5dwVRQTkzaN4wl8Owmw2jeMelNh6Ya0Xp1X8iq4fVi_DNcr8pqKmoYuD-dNaZzXQ1WyqCTbCXvjVT-lqzQJWFaeES41/s400/Jan+11+075+edd+surg.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVY4R5_FzXfNzfomhnxOEqIlSztcOdySC4uo1VvrzHdeIAjnZw-xByTWN5XhPMOuuVleNkCs0fIxBCO-1L5ukW6BK1UfLim5dP1PMtqNClrH7c7S_k4qSG4H19pRPxr7Q_aCBbNYXKhciD/s1600/Jan+11+076+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560316574645476690" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVY4R5_FzXfNzfomhnxOEqIlSztcOdySC4uo1VvrzHdeIAjnZw-xByTWN5XhPMOuuVleNkCs0fIxBCO-1L5ukW6BK1UfLim5dP1PMtqNClrH7c7S_k4qSG4H19pRPxr7Q_aCBbNYXKhciD/s400/Jan+11+076+edd+surg.jpg" border="0" /></a> Ta Da! The results.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDfVQkXc9zde13Mz2-kLfKBK8TSbfDywFW5N3_xezfMK3qDOUF3s_whJxxPgHKXLuBqFAiASo5gs0iS3BjlH_wIO0Asm2r-O8bWRfepqgr87uA_jTG808MHPmQZLL2KN4OpviALxIN9QwV/s1600/Jan+11+077+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560316564642016322" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 369px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDfVQkXc9zde13Mz2-kLfKBK8TSbfDywFW5N3_xezfMK3qDOUF3s_whJxxPgHKXLuBqFAiASo5gs0iS3BjlH_wIO0Asm2r-O8bWRfepqgr87uA_jTG808MHPmQZLL2KN4OpviALxIN9QwV/s400/Jan+11+077+edd+surg.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWRWF_lg_bNdzcZNMeX4QET1eesLKJ373-SHANFFAhrvAn-f_mgUIn3ZpL56K-CQkOEYTsTVunnhkyETm4ZfCj9vOH0UeC8vHw4kDSKxv0n_wKgYT9V58NvWaoaIeNISAqZD8up3aO6p3E/s1600/Jan+11+078+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560316093916574066" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 316px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWRWF_lg_bNdzcZNMeX4QET1eesLKJ373-SHANFFAhrvAn-f_mgUIn3ZpL56K-CQkOEYTsTVunnhkyETm4ZfCj9vOH0UeC8vHw4kDSKxv0n_wKgYT9V58NvWaoaIeNISAqZD8up3aO6p3E/s400/Jan+11+078+edd+surg.jpg" border="0" /></a>Okay, so let me explain the following photograph. At this point Ryker had been cyring in a painfully horse voice A LOT, I had already broken down 3 times, had to leave the room when they were working on him twice, and I had just found out that the IV in Rykers foot missed the vein. So all the fluid as well as all his pain medication was being pushed into his arm tissue, and not in his vein. For THREE hours. Because of this he was beyond miserable, and we had no clue until we unwrapped him and found his arm disturbingly swollen. I freak out. I mean, FREAKED OUT. Another potential nurse friendship destroyed. My two sisters were there, including my nurse sister who assured me it would be okay, and unfortunately it happens all the time. If it weren't for them, I may now have a charge of assault on my record. So this picture was taken after I lost it, bawled my eyes out, left the room and came back after I got a hold of myself. It had been a VERY long day. So, weirdly, I kind of like this picture. It shows me at a time of extreme anger, worry, exhaustion, frustration, and the utmost real emotion of a mother with protection and love for my precious child. I would do anything for him. It was an unbelievably emotionally painful day. And this is what I looked like that day.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzBuMvAxH0w5wJlGYkHnTPQNsU5ThjKG7E8Tj_BHA8AZmcI_1JkaAJbWMV9EnArwPdAgHv1340acT8H7kxfZ4echxtdjkujYKj2rTZHMYpDeguFIdfr1yRbURTePW3Dn_L5nKwg04TBcZB/s1600/Jan+11+080+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560316089197818914" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 310px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgzBuMvAxH0w5wJlGYkHnTPQNsU5ThjKG7E8Tj_BHA8AZmcI_1JkaAJbWMV9EnArwPdAgHv1340acT8H7kxfZ4echxtdjkujYKj2rTZHMYpDeguFIdfr1yRbURTePW3Dn_L5nKwg04TBcZB/s400/Jan+11+080+edd+surg.jpg" border="0" /></a> Then my sister reminded me about all the good parts of the day. Ryker had his face completely fixed. How awesome is that!? What an amazing blessing. I am so incredibly grateful that this is our challenge. I wouldn't trade it. Its ours. And yes its hard, but we can do hard things.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp-IgTENeOeNDcZgd7apEp0BZWg0oUCIr3tvwxP5XYMgSA_rxqjkA2r8J0QDYQdJzhpmx2cbA7ahQZdVtjVXuldN9oKANXDRoDWlHa67Rr230CXnK06pYNqb7DpLQZ_lRgiTAEziT0cPpt/s1600/Jan+11+082+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560314896749093682" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 334px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjp-IgTENeOeNDcZgd7apEp0BZWg0oUCIr3tvwxP5XYMgSA_rxqjkA2r8J0QDYQdJzhpmx2cbA7ahQZdVtjVXuldN9oKANXDRoDWlHa67Rr230CXnK06pYNqb7DpLQZ_lRgiTAEziT0cPpt/s400/Jan+11+082+edd+surg.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMNtHdRdT-L8kE-u1LAC7JLOjv4ugCXII8VDzJgueA2e9sqcotVSRgjLP2rPykC0uYu6BPnxsuGMZZzko-RbqGx6h-szim2YwTLK9A3G26Q9dD3Bs0Y7Go8p35FpBqKmN62c2pTsz4cQOl/s1600/Jan+11+087+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560314890887579154" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMNtHdRdT-L8kE-u1LAC7JLOjv4ugCXII8VDzJgueA2e9sqcotVSRgjLP2rPykC0uYu6BPnxsuGMZZzko-RbqGx6h-szim2YwTLK9A3G26Q9dD3Bs0Y7Go8p35FpBqKmN62c2pTsz4cQOl/s400/Jan+11+087+edd+surg.jpg" border="0" /></a>Ryker really did amazing. Once we got him on tract with the pain meds and removed the IV, he actually slept a bit. We got to leave first thing in the morning and since we have been home, he has been a champ. I can really believe that he will bounce back from this crazy fast. He's kind of eating, but good enough for now. And after three nights, he is almost back to sleeping through the night. Told you he was a rockstar! I think a few more days and we will be back to our normal. I am really amazed how well he is doing! The metal bow will stay on for about 2-3 weeks to protect his healing face. The little yellow thing on the side of his nose comes off in a few days, and the clear gadget in his nose stays a month or so. It helps with the shape. So, we made it through and we are actually doing well. We're not through the woods yet, and who knows if with kids, you ever really are, but we got one down, and that's pretty dang good. Thanks everyone for your support. That was really all we needed to make it, lots and lots of support. Thank you for you love, prayers, and cheers from the sidelines. It has meant everything to us. </div><div></div><div>Day Two</div><div></div><div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIrfaOHaNCOVP4Fm-ALqTvdXm6uCjmc-sghssKVt0MCW3L74g-LKmNAGmI9qDxlduuBR2S2NtRoV5urj8uVltKbS7ZnX38JEAzfiUdJ6z5XSMZmlssOlGPfheKHahIkXDunNG-aE625xJ5/s1600/Jan+11+106+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560313115804862114" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 326px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgIrfaOHaNCOVP4Fm-ALqTvdXm6uCjmc-sghssKVt0MCW3L74g-LKmNAGmI9qDxlduuBR2S2NtRoV5urj8uVltKbS7ZnX38JEAzfiUdJ6z5XSMZmlssOlGPfheKHahIkXDunNG-aE625xJ5/s400/Jan+11+106+edd+surg.jpg" border="0" /></a>Day Three<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrhqSC_O2OizmISehQFD3x4uv9kxYWt10ki4oVa8ZZWemf0Ett5bP6HeEPTjw6BYpjK7ML1jEA5l4ZOP31V2CzrY4LoAnunqmEuKM1T51L6iBM12hxJcrhXFmnqfp6Q_h9YfpKJPz2HkjV/s1600/Jan+11+111+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560313107773044162" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 310px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrhqSC_O2OizmISehQFD3x4uv9kxYWt10ki4oVa8ZZWemf0Ett5bP6HeEPTjw6BYpjK7ML1jEA5l4ZOP31V2CzrY4LoAnunqmEuKM1T51L6iBM12hxJcrhXFmnqfp6Q_h9YfpKJPz2HkjV/s400/Jan+11+111+edd+surg.jpg" border="0" /></a></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div></div><br />Okay, so you get the general idea, right?<br />Well, here is some of that nitty gritty I was talking about.<br />These 24 hours are awful.<br />They just are. Plan on it. Amp yourself up, because this is a big step.<br />But when you make it through it means you will have one less surgery to go through.<br /><br />Okay, a few more gems.<br /><br />Don't stay overnight by yourself. Even if you have family/friends stay until late and come early in the morning. Even if there are NO beds for you, let alone another person.<br />DO NOT STAY ALONE.<br />You will need the most support, mentally and physically at 3AM and you will really want someone there. Trust me. I didn't, and oh how I wish I had.<br /><br />3AM was also the same time I ran down the hallway to find a bathroom where I promptly threw up. Who know why, stress, exhaustion, bad pizza? I<br />I'll never know, but this brings me to my next gem.<br />Depending on the time or year and pitucular hospital you stay at, you may have to share a room. Yup, I said share. They DO still do that. And if in fact you do end up sharing, Like I did, you may not get the side with the bathroom. So be prepared. It's incredibly awkward, uncomfortable, and disruptive. But you'll survive. Chances are this will not happen, but just a heads up.<br />As stated in the above, the dumb ass nurse who missed my sons vein, causing it to swell like a sausage is sadly one of many. Check to make sure the IV is actually IN the vein about every hour and save you and your baby much pain. I didn't even know to check, but wish I had. Be your little ones advocate. I will say, I have NEVER made a nurse friend during any of Rykers surgeries. Not on purpose, but I am not there to make friends, I am there to make sure my child is getting the absolute best, at all times.<br /><br />The Hardware.<br />By looking at the "after" pictures you may notice a few additions to Rykers face. The two important ones are the Logans bow and the nose stent.<br />The Logans bow is the metal half circle taped to his face. Again, some Docs use 'um, some don't. They in no way hold the skin together. All they do is create a barrier to protect the face and mouth. With this on it acts as a bumper. Anything that would get close to the mouth hits the Logans bow first. Or if the baby was to roll his face to the floor or your shoulder, it again protects the mouth from contact. At least, in theroy.<br />In reality, I think its stupid. And so do a lot of Doctors. Ours said that we were to keep it on until it fell off, about 3 weeks later.<br />It came off the first day we go home and we nevered bothered to reattach it. For Ryker, It didnt really protect anything. In, fact it just gave him something to grab on to and mess with.<br /><br />The nose stint actually IS extremely important. This is the clear nose tube wisker looking thing. These act as a brace to shape the nose as it heals. It is imperative to keep them in for the best functioning results, as well as appearance. The first set is held in with a stitch. A week later they take the stitch out. From then on you tape down the "wiskers" to hold it in. Again, this is where cut up bandaids will save you life. You will have to take the stent in and out often to clean it, and the Bandaid tape is the very best for that precious skin. These stay in for up to 3 months. Ryker got to the point where he would not keep them in during the day, but even then I would put the stents in at night. These stints can really make a difference in the overall appearance and shape of the nose. As he grew we went up in stint size a few times, and no matter the size it is awful to shove it up their nose over and over. Ryker HATED it, but once it was in he forgot all about it. So, I got really good at getting it in quick. I would put a little Auqaphore on the stint to help it slide in a bit better, distract him, and have the cut up bandaids ready to go. I got pretty good at it. Maybe I can do it for a talent show one day....<br />Anyway, this was another item we could cross off our surgery "to do" list and I was thrilled when it was over.<br />Looking at Ryker now, I am AMAZED. His lips are PREFECT! And I don't mean Motherly love perfect, I mean PERFECT. His nose looks amazing as well! Our surgeon is clearly talented. And I know I did everything on my end to give him the best results possible. That alone is pretty satisfying.<br /><br />Ryker today. His scar is so unnoticeable that only when the light reflects off of it in a certain way can you even see it. Isn't he Darling!?<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdnUsulRctTLvQnbpebifvspEfO-UloZE0e0BKpq1GKJUgHI28iptjarVnC2kQADYTNRrVjt1Gzbfz4I6muruWAC-02rwlXGSSbbEtZ-ORiU5_xboZmrO8Vza3kAzuk8Kvg_ryxaeB-Ool/s1600/IMG_2676edd.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 299px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdnUsulRctTLvQnbpebifvspEfO-UloZE0e0BKpq1GKJUgHI28iptjarVnC2kQADYTNRrVjt1Gzbfz4I6muruWAC-02rwlXGSSbbEtZ-ORiU5_xboZmrO8Vza3kAzuk8Kvg_ryxaeB-Ool/s400/IMG_2676edd.jpg" alt="" id="BLOGGER_PHOTO_ID_5695873771416436818" border="0" /></a>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-3404196291752427253.post-59129040475469372412012-01-09T19:37:00.000-08:002012-01-09T20:26:28.376-08:00Taping and Ear tubesIf your lucky like me you just might get to "Tape" you babys face for a month before the lip repair. All Doctors are different so you just may dodge a bullet. If not, I have a few tips that I would have KILLED for! Enjoy!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivjovkjANYkkO2Dfe57rTYFRmoJ5o9Vxe9sF7MfeeVO9iFgTraqiMp6l62TnPP-qpC_mmmVuho3AptThfxmaflVTN0t6ZiVMPU1DxrqsOr7a1S_dLMNVIzI2UWl4Pbn2sckPZon-SdDhgH/s1600/Jan+11+024+edd+surg.jpg"><img id="BLOGGER_PHOTO_ID_5560318930722264418" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 339px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEivjovkjANYkkO2Dfe57rTYFRmoJ5o9Vxe9sF7MfeeVO9iFgTraqiMp6l62TnPP-qpC_mmmVuho3AptThfxmaflVTN0t6ZiVMPU1DxrqsOr7a1S_dLMNVIzI2UWl4Pbn2sckPZon-SdDhgH/s400/Jan+11+024+edd+surg.jpg" border="0" /></a><br /><br />A month before Rykers lip repair the Surgeon sent us home with some medical tape and the instructions to tape Rykers lip together and keep it taped together ALL...THE...TIME.<br />Let me tell ya, this whole taping thing was a NIGHTMARE!!!<br />Seriously, AWFUL!!!<br />The taping is thought to stretch the skin and prepare it to be attached with the best possible results. Fine, but just a few minor problems.<br />first, babies in general, especially babies with cleft lips, tend to drool, have runny noses, sweat, and so on. All kinds of things wet. Well, wet skin and adhesive do not mix!<br />Rykers tape would come off about every hour.<br />So get stronger tape, you might say.<br />We did.<br />In fact, we went through 6 different kinds of medical tape before we found one strong enough to hold.<br />Great! Problem solved!<br /><br />Not quite!<br /><br />THAT tape was so strong that it simply would not come off for cleanings or readjusting, and when it did come off, after much pulling, it would leave a rash. Nothing worked good enough to hold for longer then an hour, and still come off relatively easy when needed. We tried EVERYTHING! Both Ryker AND I spent day after day crying our eyes out. It hurt him, it hurt me hurting him....It was Awful.<br /><br />Then a light bulb went on.<br />What is the best non-irritating, fast holding, water resistant "tape" for skin?<br /><br />Bandaids<br /><br />We took your standard Bandaid, (oversize ones work great too) cut out the gauze piece, and cut the sticky part down the center long way. We rigged the lesser adhesive tape by reinforcing it with the Bandaid tape. "t" style. It worked like a charm! Stayed super well, and came off decently when it needed to. Yeah!!!<br />This Bandaid "Tape" came in handy later too. For AFTER the lip repair.<br /><br />So if lip taping is in your future, stock up on good old fashion Bandaids!<br /><br />Moving on to Ear tubes.<br />If your little one has a cleft palate, it is EXTREMELY likely that he/she will need ear tubes. Really, NO BIG DEAL.<br />A lot of kids get them, cleft or no cleft. It is a "no big deal" add on. I strongly recommend setting it up so that the when they do the lip repair surgery, they also put the tubes in at the same time. Most Doctors will work with each others scedual to get this accomplished.<br />Ryker had been getting so many ear infections, we were THRILLED to finally get them in.<br />At some point he will most likely grow out of them, but they are a major blessing in the meantime.<br />Want more detailed Ear Tube info? Go <a style="color: rgb(255, 0, 0);" href="http://www.entnet.org/HealthInformation/Ear-Tubes.cfm">here</a>.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3404196291752427253.post-52069324202174118482012-01-09T19:25:00.000-08:002012-01-09T19:34:55.490-08:00SmileThese are some of my very FAVORITE pictures of Ryker. My heart simply melts when I look at them. This is the last post I did on my family blog before Rykers lip repair. I don't think I will ever be able to look at these cherished pictures without tearing up. And I'm not exactly sure why. It was such a loss and a triumph when he had that surgery. Such conflicting emotions for me, but one sure thing these pictures captured. A smile.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVcgcUuP4pfl5x6wu0AW9ozkmcTQPpqQTEyCd4ncTHkrB7UMRBFHzU5bciIvBwxsxdCvxtxD6zsuJ4HzJbWztVeL-Odgt_dA1A9cok2OhAG1jzFm4FNoMWiGxOD9EAwCe46xrKfRc7IZzK/s1600/Jan+11+060+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560043993595596018" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 308px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVcgcUuP4pfl5x6wu0AW9ozkmcTQPpqQTEyCd4ncTHkrB7UMRBFHzU5bciIvBwxsxdCvxtxD6zsuJ4HzJbWztVeL-Odgt_dA1A9cok2OhAG1jzFm4FNoMWiGxOD9EAwCe46xrKfRc7IZzK/s400/Jan+11+060+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjejgyUNuI_voDLioc8VjDm9kPKoZ2s7POxOYudFInN1_yMQZ7qk-Z7HJ55-NJwlNVL7U2RYUctWt35659Ej8zPypHMwbyIvyYI7taxYyRYMmUyw_SQLPMzWv7IqTmnD-em4xnrZRaXoaox/s1600/IMG_1086+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560043285171874754" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 342px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjejgyUNuI_voDLioc8VjDm9kPKoZ2s7POxOYudFInN1_yMQZ7qk-Z7HJ55-NJwlNVL7U2RYUctWt35659Ej8zPypHMwbyIvyYI7taxYyRYMmUyw_SQLPMzWv7IqTmnD-em4xnrZRaXoaox/s400/IMG_1086+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDsp845sSln5B1bluytDbG8gsamVtNj3riIidJVZPNfqqwQn-Nf_i0wwTHb9CwTxsAFFQD8bOdLVmbT3t3QGblfY61JbFFqxNmIXT0LWuBx1XyIgbIucNlcV-ERk9r21Y0t_GYvSvjKAbc/s1600/Jan+11+009+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560043280683592850" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 326px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjDsp845sSln5B1bluytDbG8gsamVtNj3riIidJVZPNfqqwQn-Nf_i0wwTHb9CwTxsAFFQD8bOdLVmbT3t3QGblfY61JbFFqxNmIXT0LWuBx1XyIgbIucNlcV-ERk9r21Y0t_GYvSvjKAbc/s400/Jan+11+009+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZqfyk3XNT0lAKRrTJqt6G0z08yzldCdxS8Y_ON41Sj2tI_SLDNMhqk4pRhz5kWBaafYFgOthziPMu2W2fKiEKu7mQqUkB-pYw0yXUscmiD0jPyXMJzDto0P5C4cTRDt4FaQWc_Ah3wUtB/s1600/Jan+11+059+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560042928787702306" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 307px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZqfyk3XNT0lAKRrTJqt6G0z08yzldCdxS8Y_ON41Sj2tI_SLDNMhqk4pRhz5kWBaafYFgOthziPMu2W2fKiEKu7mQqUkB-pYw0yXUscmiD0jPyXMJzDto0P5C4cTRDt4FaQWc_Ah3wUtB/s400/Jan+11+059+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgouXGsQch1CFK_L-n5zXn2d_wA2czClM5Xfjh81nZ-Hzy0Fjdaj-V4kwpCdWRllVbV8PsQLdt0oTk2wmVMK9SCwg5WpIux9PmqiaxeMgNp2kfNNPCOYd7XVKsCXYlvd0PPANm6hBvNFAL2/s1600/IMG_1086+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560041723785318834" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 342px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgouXGsQch1CFK_L-n5zXn2d_wA2czClM5Xfjh81nZ-Hzy0Fjdaj-V4kwpCdWRllVbV8PsQLdt0oTk2wmVMK9SCwg5WpIux9PmqiaxeMgNp2kfNNPCOYd7XVKsCXYlvd0PPANm6hBvNFAL2/s400/IMG_1086+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcy6SXRwIBqmBWoWds8BJGA5CeBiMBfdqb5mf_uAELjzvp1d4Ee5nbFudh1heb58c12mDsjJzd6WPSqrGUZF_Z_CObGHcLC6sX9Ctxvn9ajqAViwCVy-c4KFXrafQNfuLtSdaAh3rxIsDR/s1600/IMG_1049+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560041717901459394" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 317px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcy6SXRwIBqmBWoWds8BJGA5CeBiMBfdqb5mf_uAELjzvp1d4Ee5nbFudh1heb58c12mDsjJzd6WPSqrGUZF_Z_CObGHcLC6sX9Ctxvn9ajqAViwCVy-c4KFXrafQNfuLtSdaAh3rxIsDR/s400/IMG_1049+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirBaTAr5zx8jsEjgdccZmVpbcLQtBGTDH1wqtmc6vq58-b07MnKHstYHaaHyUMp3Px8p5wULwzwYlYYKQDfmCe5mh5JSodyV4MvwG0sNEddsJpPNeLpeW4RhjuVfIxGllujoqSkDbYfVUm/s1600/IMG_1008+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560041713461829746" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 352px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEirBaTAr5zx8jsEjgdccZmVpbcLQtBGTDH1wqtmc6vq58-b07MnKHstYHaaHyUMp3Px8p5wULwzwYlYYKQDfmCe5mh5JSodyV4MvwG0sNEddsJpPNeLpeW4RhjuVfIxGllujoqSkDbYfVUm/s400/IMG_1008+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjhcBErLFxWLRecjGy24IMbxf1FP92Mi2oyLaS85VVpEaYHI5zjd9JfObn9PwiPM8EhqHKxcWEkw0PsujgkDu7c9fin04Ta_yhKjBqCJ59i14XFxr5pburrBb-NYpuN05gyaEVk8qC7GjZ/s1600/IMG_0943+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560041170092428466" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 308px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjhcBErLFxWLRecjGy24IMbxf1FP92Mi2oyLaS85VVpEaYHI5zjd9JfObn9PwiPM8EhqHKxcWEkw0PsujgkDu7c9fin04Ta_yhKjBqCJ59i14XFxr5pburrBb-NYpuN05gyaEVk8qC7GjZ/s400/IMG_0943+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZHSWyOaZqB2C8iWzzGMNhLFJiOe42zan-dyhIGbv1fPNaDMk_VRH_10uRhNRkY72UE6ZZLgrqu4bYL0cLhsdoyuo_Ya9O5dcFnN54GyONVon5Z061dKmsxgHIvDhfb1nKjDZSI59RVwgg/s1600/IMG_0930+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560041168020162178" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 366px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhZHSWyOaZqB2C8iWzzGMNhLFJiOe42zan-dyhIGbv1fPNaDMk_VRH_10uRhNRkY72UE6ZZLgrqu4bYL0cLhsdoyuo_Ya9O5dcFnN54GyONVon5Z061dKmsxgHIvDhfb1nKjDZSI59RVwgg/s400/IMG_0930+edd+smile.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3fdRlHkmowxjo2QAsIdV6Mmdk2xu-WZlQnkreSR3I8VXFGaTSywkfdkbsvfbQwrNt66RmHnixyWv5wNN2ls18WrgnvZki0Lcg4NZS2JTeIiQe-M2VpGiRYdTl5th_zrCE3H1ca6zMQ8pZ/s1600/Jan+11+057+edd+smile.jpg"><img id="BLOGGER_PHOTO_ID_5560041163786558866" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 342px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3fdRlHkmowxjo2QAsIdV6Mmdk2xu-WZlQnkreSR3I8VXFGaTSywkfdkbsvfbQwrNt66RmHnixyWv5wNN2ls18WrgnvZki0Lcg4NZS2JTeIiQe-M2VpGiRYdTl5th_zrCE3H1ca6zMQ8pZ/s400/Jan+11+057+edd+smile.jpg" border="0" /></a></div></div></div></div></div></div></div></div></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3404196291752427253.post-90567244502330733452011-10-06T12:35:00.000-07:002012-01-09T19:21:27.856-08:00HoneyCuffs and Miracle blankets<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizY1RySFXR5L7Rv2oyzVV2J4g8VsJFhVQUxqplD7LLHGrotHN5T0bN4Wwq4sRSlGc0VVMMxqwp4Sufl9qAlp-svl6sBv_uVne7tBVmbYadytYFeI7ncyD9qb9W0UmFCyXb7mijiQp-Mip7/s1600/Snuggle+WRaps+new+2+picture.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 348px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizY1RySFXR5L7Rv2oyzVV2J4g8VsJFhVQUxqplD7LLHGrotHN5T0bN4Wwq4sRSlGc0VVMMxqwp4Sufl9qAlp-svl6sBv_uVne7tBVmbYadytYFeI7ncyD9qb9W0UmFCyXb7mijiQp-Mip7/s400/Snuggle+WRaps+new+2+picture.png" alt="" id="BLOGGER_PHOTO_ID_5695835486192333890" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbiprckjbIjDywaesGX8rBQWJbp1ytcAI3HT-ovbbfrD2Wes9Ey3rrUGoT74xRIhVeOiieBJRJmmYnIlLWYuGHGGxlhJykPIidodPD0Ih2DCUALQ_aqBXfi-NjKq4t1mYkYrV-nDNfPhv/s1600/Snuggle+Wraps+new+picturer.png"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 325px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvbiprckjbIjDywaesGX8rBQWJbp1ytcAI3HT-ovbbfrD2Wes9Ey3rrUGoT74xRIhVeOiieBJRJmmYnIlLWYuGHGGxlhJykPIidodPD0Ih2DCUALQ_aqBXfi-NjKq4t1mYkYrV-nDNfPhv/s400/Snuggle+Wraps+new+picturer.png" alt="" id="BLOGGER_PHOTO_ID_5695835489218939570" border="0" /></a><br />One challenge that we came across quickly and often, was keeping Rykers arms away from his face. There was 4 or 5 times that we were instructed by the doctor to restrain Rykers arms for his own safety. Even for weeks at a time.<br />The first time we ran into this particular problem, was after our first surgery. At the hospital we were given glorified toilet paper rolls (see above) and told to keep them on Ryker at all times for the next 4 weeks. I listened polity and nodded obediently, all while thinking in my head that these people were deranged. Anyone who has ever had a child, knows someone who has a child, or has seen a child on TV would understand that keeping a baby's arms restrained would be utterly awful, and a bit unrealistic.<br />Obviously there are extremely important reasons for the restraints. Babys have the tenancy to flail their arms about early on, and later are super prone to putting EVERYTHING in their mouths. Both actions being SUPER dangerous to a freshly healing mouth wound. The little muffins can cause some unintentional, but SERIOUS damage and pain to themselves in the blink of an eye. And after later surgeries, they may even intentionally pull, poke or play with something. Trust me. The last think you need is another "procedure" because your baby's hands got loose and caused some damage.<br />That being said, there is also what is realistic for you and your family. For us, the first thing we did after we got home from our first surgery was throw away the Velcro toilet paper tubes.<br /><br />We were blessed to come across two very helpful products. The first being a simply marvelous product for Mamas and babies in general!<br />It is only the BEST SWADDLING BLANKET EVER!<br />It's called the Miracle Blanket. Check it out <a style="color: rgb(255, 0, 0);" href="http://www.miracleblanket.com/index.htm">here</a>.<br />They are awesome for like 96 reasons. One of them being that I could put Ryker in this baby and KNOW he was not going to wiggle out and get his hands free. Plus, he LOVED it! Win, Win! When he slept in it, he always slept better as a whole, and I was relieved to know he was comfy!<br />Watch how it works <a style="color: rgb(255, 0, 0);" href="http://www.miracleblanket.com/instructions.htm">here</a>.<br /><br />The second sanity saving product is the Honeycuff. Seen<a href="http://www.honeycuffs.com/"> <span style="color: rgb(255, 0, 0);">here</span></a>.<br />Watch how it works <a style="color: rgb(255, 0, 0);" href="http://www.youtube.com/watch?v=FQg9XnM4rXc">here</a>.<br /><br />BEST THING EVER!!!<br /><br />With this, he could actually move around a bunch without getting in the danger zone. The darling inventor of the Honeycuff is a cleft baby Mommy. She knew there had to be a better way for arm and hand restraints for little ones, so she made her own better way. And I love her for that. She is a local Utah girl and insisted on driving 40 min to hand deliver my Honeycuff, so I wouldn't have to wait for shipping. She will always have a gold star in my book.<br /><br />With these two fabulous items we sailed through the whole arm restraint thing, as well as you can sail through something like that I guess. But these truly made life a bit easier for us, and I highly recommend them both!<br /><br />Honestly, I wasn't a freak about keeping some sort of contraption on Ryker at all times after his surgeries. I would let him be "free" a great deal. But at the same time, I would WATCH him and use my rather good common sense to judge when it was okay. I never utilized any kind of arm restraint for the full "recommended " amount of time. I knew my baby and I knew when both he and I were ready to put them back in the box. In fact, the surgery he had for his soft palate repair was right after he learned to crawl. The Doctor told me the standard, "arm restraints for 4 weeks," routine. I listened polity and nodded obediently, and ultimately did NOT ONE day with the restraints. Instead, I was extremely attentive, and took full control of what went in his mouth. Food only. That is what worked for us.<br /><br />For another perspective on arm restraints, read below.<br /><br />Are arm restraints worth it? Read <a style="color: rgb(255, 0, 0);" href="http://kidswithcleftsutah.blogspot.com/2011/01/study-are-arm-restraints-worth-it.html">this</a>.Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3404196291752427253.post-8698116416395599692011-08-02T13:07:00.000-07:002011-09-20T12:54:59.030-07:00They say...Surgery oneSurgery One.<br />This is a post I posted on my private family blog about a week after Rykers first surgery. As I write this post, Ryker is 11 months old. This memory seems so long ago. Bitter sweet I guess. Okay, so just read it and then I'll recap.<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8RKMlbRUb5AXoaaDvlfmzibfLrX8xFZnGvZlTe3QGJ1z1GF1Rqco3QPC1aMXIw2XpglldInZ1xhFQwRPy63UHgS-Ats4PtmfPzL1EI9pp2JoE5KQ0dpk4bsJE3vTEleyH8xHWtDBWcJYZ/s1600/oct+nov+003.jpg"><img id="BLOGGER_PHOTO_ID_5539545704927067090" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8RKMlbRUb5AXoaaDvlfmzibfLrX8xFZnGvZlTe3QGJ1z1GF1Rqco3QPC1aMXIw2XpglldInZ1xhFQwRPy63UHgS-Ats4PtmfPzL1EI9pp2JoE5KQ0dpk4bsJE3vTEleyH8xHWtDBWcJYZ/s400/oct+nov+003.jpg" border="0" /></a> <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Ryker</span> had his first surgery about a week and a half ago. On one hand it is super exciting to start the process that will help our little man become more of a stud then he already is, both in physical appearance as well as function. On the other hand, it pretty much sucks IMMENSELY. This first procedure is to put a retainer like prosthesis in his mouth to help guide his <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">palate</span> where to grow, plus make it WAY easier to eat. Good stuff, right? Well, what they don't tell you is that the palate is semi-permanently held in with brackets and pins attached to his mouth and gum line. Ouch...and he has to relearn how to eat, which means he just won't for a while, and when he does it will probably hurt. Super. Also a small chain like thing is attached from one side of his gum line to the other to start bringing the overall gum line, lip, and palate to where it is supposed to be. Every two weeks they tighten it. They say it doesn't hurt. They say. They say a lot of things that make me want to punch them in the face. Anyway, my life is beyond nuts right now, but I know it will get better. And just when I can't deal anymore, I get tossed a bone. A good night of sleep (anything over 4 hours) a dinner from a neighbor, or a Great Grandma coming to save the day. So really, we are doing okay. And okay is okay for now. <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Ryker</span> really is a trooper, its me that's a mess, and this was supposed to be the "no big deal" surgery.....They say.....;)<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYrJHwLsnuSlsm9Q_QhCClRYs1jEoK2iZPW9Qm_f3JVNPZl8kcF6SGM7QJ1u04aHXYc43MU-8Os5BibMlneNX6DjyLSk5-6QpbJCzhG8V5hbNn7JNOMrGVbcX0LJB_6CGfeulQqlYC7AsL/s1600/oct+nov+001.jpg"><img id="BLOGGER_PHOTO_ID_5539545698395869394" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYrJHwLsnuSlsm9Q_QhCClRYs1jEoK2iZPW9Qm_f3JVNPZl8kcF6SGM7QJ1u04aHXYc43MU-8Os5BibMlneNX6DjyLSk5-6QpbJCzhG8V5hbNn7JNOMrGVbcX0LJB_6CGfeulQqlYC7AsL/s400/oct+nov+001.jpg" border="0" /></a> Dr. <span class="blsp-spelling-error" id="SPELLING_ERROR_3">Morales</span>, the surgeon. I have a love-hate relationship with this man.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRBIW471l_8oDHHC-f8zm_dpiloddh7B5PiLoK50Ak8YV_1KFO5lTC1A9W-EdqQvuuy4LVnFLMqDq1S-o1wnexaYXvHbZWxI0X1s-Eh7MUQMF0DnzQ9SoQfZtrMJKoroc_mYZ_i39XN9qZ/s1600/oct+nov+002.jpg"><img id="BLOGGER_PHOTO_ID_5539545694616872578" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhRBIW471l_8oDHHC-f8zm_dpiloddh7B5PiLoK50Ak8YV_1KFO5lTC1A9W-EdqQvuuy4LVnFLMqDq1S-o1wnexaYXvHbZWxI0X1s-Eh7MUQMF0DnzQ9SoQfZtrMJKoroc_mYZ_i39XN9qZ/s400/oct+nov+002.jpg" border="0" /></a>Now this man, I got nothing but love for. Allan has been absolutely amazing. I would break into a million little pieces without him.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMSCoT1N-6ACK0hjPW80lcC_fCGX6EbcOzgK4Q0F7O7lVf0kfHTs_J_f0frdETbLUrX1JTGFfSqX-93pGj2OEdt7qCUFW-yeJHoUMKjdo7RN59uqpkR2zw3fLy0EOnuhQGKDtbZqKJ7PfN/s1600/oct+nov+004.jpg"><img id="BLOGGER_PHOTO_ID_5539545263596553490" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMSCoT1N-6ACK0hjPW80lcC_fCGX6EbcOzgK4Q0F7O7lVf0kfHTs_J_f0frdETbLUrX1JTGFfSqX-93pGj2OEdt7qCUFW-yeJHoUMKjdo7RN59uqpkR2zw3fLy0EOnuhQGKDtbZqKJ7PfN/s400/oct+nov+004.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcmTzW9MOaDsqv3iBaQ35DmyqcI4CEkYRF5ykLpD_sPYg2zVIAu_14zb_j2Ii3wccZ04xtLN5qpgXrDhyJ23zDHCSCdzQYdZIRUTqVvk_0Q2gqERCbNsTmNXTziaX5g0GVc6zsY-7tGiPD/s1600/oct+nov+007.jpg"><img id="BLOGGER_PHOTO_ID_5539545256851894354" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcmTzW9MOaDsqv3iBaQ35DmyqcI4CEkYRF5ykLpD_sPYg2zVIAu_14zb_j2Ii3wccZ04xtLN5qpgXrDhyJ23zDHCSCdzQYdZIRUTqVvk_0Q2gqERCbNsTmNXTziaX5g0GVc6zsY-7tGiPD/s400/oct+nov+007.jpg" border="0" /></a>You can't see much but swollen lips and the chain.<br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvy3Om33XIojtUIajxsL45kP-zGl4xBlbQ7KTjqgtWdZtlPVScIO0lTIEOBVp0u3ep9vODRj9TdGGWqYyzRTNCni2NcBskGRpJ5f6vghXewQIynLRF1VvGAxu7PuEMTItF0vSFqYZOwjaD/s1600/oct+nov+008.jpg"><img id="BLOGGER_PHOTO_ID_5539545249664735890" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 267px; CURSOR: hand; HEIGHT: 400px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvy3Om33XIojtUIajxsL45kP-zGl4xBlbQ7KTjqgtWdZtlPVScIO0lTIEOBVp0u3ep9vODRj9TdGGWqYyzRTNCni2NcBskGRpJ5f6vghXewQIynLRF1VvGAxu7PuEMTItF0vSFqYZOwjaD/s400/oct+nov+008.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1tBGQK5QmKfx_obfBQgfVwQGreDTR64X-oyDIYI3VgxuJLXVkk7It5a_CH2GXBHKcIhbsTr0txmRjgeZx5Cml6nbNm9k5B9xRyM2zKSVknUlnSTifYPAC0Wp8ubZajyJCWu8N8ULyMdsz/s1600/oct+nov+009.jpg"><img id="BLOGGER_PHOTO_ID_5539544651451276306" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1tBGQK5QmKfx_obfBQgfVwQGreDTR64X-oyDIYI3VgxuJLXVkk7It5a_CH2GXBHKcIhbsTr0txmRjgeZx5Cml6nbNm9k5B9xRyM2zKSVknUlnSTifYPAC0Wp8ubZajyJCWu8N8ULyMdsz/s400/oct+nov+009.jpg" border="0" /></a>This is a week after his surgery. the little ball thing is to help shape his nose. And though you may not see it, the gap is starting to close, ever so slightly. Okay, baby boy, hold on tight, here we go....<br /><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_1_KG68YHpLA-Y5YC-ds4XrRffGVS16Rct941Kfx08mNhdCW0FLpV0vMyHKQ3wQvstuDdUZjmXhcaRY3ec6e0bLarnj8_wgZ_NY-qxSfml5FBeWuqWCFLcPM9oLhh6aotFWFw7J8cln2A/s1600/oct+nov+013.jpg"><img id="BLOGGER_PHOTO_ID_5539544639854136674" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_1_KG68YHpLA-Y5YC-ds4XrRffGVS16Rct941Kfx08mNhdCW0FLpV0vMyHKQ3wQvstuDdUZjmXhcaRY3ec6e0bLarnj8_wgZ_NY-qxSfml5FBeWuqWCFLcPM9oLhh6aotFWFw7J8cln2A/s400/oct+nov+013.jpg" border="0" /></a><br /><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2G1-SWQ4Py8VyPPx9YO-2YmtWrwHLwYNu42RiiNBAUGOpab11Oz7lbRMhT_dqqkwONrCjyQlsXZpB762KSBjmbxfiCYCpYhyVze-U56dF_MsBQGr_jlJzc8KMa1AJeyf265hmwSovxwbs/s1600/oct+nov+011.jpg"><img id="BLOGGER_PHOTO_ID_5539544632476962850" style="DISPLAY: block; MARGIN: 0px auto 10px; WIDTH: 400px; CURSOR: hand; HEIGHT: 267px; TEXT-ALIGN: center" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2G1-SWQ4Py8VyPPx9YO-2YmtWrwHLwYNu42RiiNBAUGOpab11Oz7lbRMhT_dqqkwONrCjyQlsXZpB762KSBjmbxfiCYCpYhyVze-U56dF_MsBQGr_jlJzc8KMa1AJeyf265hmwSovxwbs/s400/oct+nov+011.jpg" border="0" /></a></div></div></div></div></div></div></div></div><br /><br />Okay, welcome back to the present. So here are a few things I want to say about my experience. The good nitty-gritty stuff that I know you are all dying for. Hopefully it will be useful for you. There are a few things I wish I would have been a bit better prepared for, one of them being that the day of your surgery will constantly be changing.<br /><br />The day before the big event. You will be told a time that you can no longer feed your darling child in preparation for his surgery. Empty stomachs = no puke. No puke = a breathing baby. We want breathing babies.<br />You will be told a time to check in at the hospital, and a surgery time. You will plan for what you have been told and act accordingly.<br />The fun part. And this goes for all the surgeries.<br />You will get at lease one call "bumping" you" to a later surgery time for any and all kinds of reasons. But no, no, you can not feed your baby in the meantime. You may get a few of these calls. You may have even made it to the hospital only to find that you will have another 3 hour wait. With your STARVING child to keep entertained. If you are a lucky one who gets to have a surgery day run as planned, I am thrilled for you. Cherish that you get to miss out on all this extra grief. And say a little prayer for the rest of us to not pull our faces off with stress and frustration.<br />One little last tip on that, please, please, please, follow the directions you are given about what and when to feed your baby post surgery. Even though it is likely things will change. I had a friend and fellow Step by Step follower get "bumped" almost 5 hours for her little mans first surgery all because another family didn't follow directions with feeding, and fed their baby long after they weren't supposed to. Don't be "that" person who makes others suffer because you didn't follow directions.<br /><br />As for the surgery. They will tell you it is really just a "procedure," not a surgery. Nope, in my book anytime you get put under for adding, taking out or adjusting body parts, that qualifies as a surgery. And all you Mamas, the first one is rough. It's almost impossible to hand over your child at the double doors of the surgery room to someone you have never met before (the sleep doc) without at least tearing up. Knowing it will be super hard on all of you, but for your child's own good, doesn't really soften the blow. But this one is only about 30 minutes. You can make it! Bring an episode of "The Office" to keep you busy in the waiting room.<br />When they are done, your little stud/princess will have a slightly swollen face with some brand new hardware. The "chain" is almost more like a flat plastic figure 8 band. This is what they will tighten about every two weeks to start everything moving to where it should be. Some have better results then others. But it will definitely point you in the right direction.<br />Also, at this surgery they will install a retainer-like part on the roof of the mouth. (for cleft palate only) This may have a little ball pushing out the nose for shape.<br />A side note about the prosthetic palate.<br />A few days before your first surgery you will meet with a pediatric dentist to get a mold of your babys mouth. This is who will make the actual prosthesis. (Again, only for cleft palate) This is the <span style="font-weight: bold;">very first surgical step</span> you will take on you cleft journey. Really, it is no big deal. They have a wad of fancy foam they shove in his mouth for about ten seconds. That's it. But you know what? It was surprisingly, embarrassingly hard for me. They had me hold Ryker on my lap. The doctor explained that I would have to pin him down and hold his head still for 10 seconds while he shoved the foam in his mouth and it set. He informed me that it wouldn't hurt, but Ryker sure wouldn't like it. The doctor shoved it in his mouth and I think I made it through 3 seconds of Rykers strangled, muffled cries, all while pinning his flailing body down before I burst into tears. I surprised my husband. I surprised the doctor, and most of all I surprised myself. It really did take me a few minutes to calm down. It rocked me a bit. This was so minor, I was confused about why I lost it the way I did. After we left I thought about it.<br />For me I had known about Ryker's cleft from midway through my pregnancy. I had a lot of time to absorb the situation and prepare for everything it was going to mean for our family. But that first appointment was when it became extremely, painfully real for me. Wow, I am tearing up right now just thinking about it. I knew that we had actually taken the first step on our journey to getting Ryker's cleft fixed, and this was just one of many not so pleasant experiences to come.<br />So my advice?<br />Make your husband, or partner, or ANYBODY else hold your baby for this one. Look away, plug your ears and count to ten. Then it will be over. And you can be the one who rescues your muffin from the mean 'ol' dentist. Just kidding! ;)Do what you feel is best.<br /><br />Okay, back to the surgery part. So the hardest part about the surgery for us was that Ryker's whole mouth was not only hurting, but it had completely changed, meaning that he would have to relearn how to eat. This is where the on purpose, broken nipples came in handy. We could at least squirt milk into his mouth, but it was great to have a complete palate. He started to eat much better pretty quickly. On Ryker, the chain didn't bring the gum line together too well, partly because his cleft was pretty wide, and partly because he kept pushing his tongue through the gap. But it did help a little, and after Ryker got used to the new palate in his mouth, it was great for all of us!<br />Okay, last tip. Because of the chain, and how easy it would be for an infant to accidentally rip it out, they send you home from the hospital with arm restraints and strict instruction to keep your baby in them at all times until his next surgery in 4-6 weeks. Yikes!<br />Well, what they give you is glorified tolite paper tubes......with ducks on them. That brings me to my next post. Honey cuffs, a brilliant alternative.Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-3404196291752427253.post-19135498621603384842011-06-12T20:32:00.000-07:002011-09-20T12:47:58.301-07:00Feeding<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7KOx3ujLxlTduQ4JuerVOMgNOKpHl5vA8WJVGofPYY37puAesd-OvjWp7ThPR3tg_XCRTsnSQvPMO4MO_72vog9K9R28BTKpiFWYiQAQQ_DmYwQ2RwkLSF7fnNX1iapCtfGtLhOdJUO6L/s1600/bottlesandfeeders-275.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 275px; height: 250px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7KOx3ujLxlTduQ4JuerVOMgNOKpHl5vA8WJVGofPYY37puAesd-OvjWp7ThPR3tg_XCRTsnSQvPMO4MO_72vog9K9R28BTKpiFWYiQAQQ_DmYwQ2RwkLSF7fnNX1iapCtfGtLhOdJUO6L/s400/bottlesandfeeders-275.jpg" alt="" id="BLOGGER_PHOTO_ID_5641133015852946386" border="0" /></a><br /><br /><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:donotoptimizeforbrowser/> </w:WordDocument> </xml><![endif]-->One of the first concerns with babies with clefts is feeding. In the hospital, they STRONGLY encouraged me to try nursing. It was super frustrating, but I do think it was important to hold him to me those first few days and let him try. We were both getting a different kind of nourishment. In the end, the only milk he could get was the mike I would squeeze into his mouth myself.<span style="mso-spacerun: yes"> </span>A bit graphic, but a fact nonetheless.<span style="mso-spacerun: yes"> </span> <p class="MsoNormal">At this point I had wrapped my mind around not being able to nurse, and I was okay with it. I still got choked up the first time he tried unsuccessfully, but I had accepted it and was ready for plan B. I was planning on pumping for a while, because then, at lease I could give him that. </p> <p class="MsoNormal">I wish I could tell you exactly how it will be if you are joining me on this crazy ride, but I can’t. I can only tell you what worked for us. And when I say “worked,” keep in mind that as I write this Ryker is 8 months old, and wearing 12-18 month clothing. Clearly feeding is NOT an issue for us!;) It just was a matter of finding what worked. For Ryker, it was the <a style="color: rgb(255, 0, 0);" href="http://www.healthcare.philips.com/main/products/mother_and_child_care/post_natal_care/nicu/feeding_and_safety/bottlesandfeeders/index.wpd">Pigeon Nipple</a><span style="color: rgb(255, 0, 0);">.</span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">Oh Pigeon nipple makers, how I want to kiss you! You should have your own holiday, truly. Again, go ahead and Google it, I’ll wait.<br /></p><p class="MsoNormal">Check out this <a href="http://youtu.be/--Iuzt-j0wA"><span style="color: rgb(255, 0, 0);">video...</span><br /></a></p>Back so soon? Okay, because babies with a cleft lip can almost never form complete suction, a “normal” bottle and nipple set up won’t do. It’s like sucking through a straw with a hole in it for our little troopers. Also, if you have a baby with a cleft pallet as well, there is the challenge of not having the full palate to aid in reverse pressure, meaning the roof of the mouth being something to push against, and nipple positioning, meaning that the palate is the cradle for the nipple. <p class="MsoNormal">The key way the Pigeon nipple works is by simply adding a one-way valve (about the size of a dime) inside the base of the nipple. Once milk is in that nipple chamber, any amount of pressure forces the milk out the nipple tip hole, and in the baby’s mouth, instead of back into the bottle. Genius! </p> <p class="MsoNormal">The Pigeon nipple also aids with cleft palates by having one side of the nipple made out of a sturdier material, and the other side made more pliable. The sturdy side is placed against the palate, or void where it holds its shape instead of collapsing. The softer side rests on the tongue and has the feel of a standard nipple. Get it? Told you, pure genius!</p> <p class="MsoNormal">This is what worked for us. We still use them. But I do have a few tips. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">First, right away Ryker started getting this canker-looking sore on the side of his palate where his cleft started. (the roof of his mouth). The doc said that it was from constant pressure from the nipple rubbing, and the fact that he had to work so hard to eat. (check for this on your little tyke). He told me there was nothing to do until the surgery where he would get his prosthetic palate. I didn’t like that answer. Ryker would cry every time he ate because it hurt so much. And sometimes he just wouldn’t eat. This KILLED me. And I REFUSED to let it continue. My solution was simple. I would make it easier to eat. How, you might ask?</p> <p class="MsoNormal">Let me tell you!</p> <p class="MsoNormal">On the Pigeon nipple, like many others, there is a “Y” slit. This is where the milk comes out. I got a super sharp knife and slit the existing “Y” to create a slightly larger “Y.” This made milk come out faster and easier. I did this trick, and within a week Rykers sore was gone! He could eat at a much more realistic speed, without so much friction on the top of his mouth. Worked for us!</p> <p class="MsoNormal">Another tip is, that for the first few weeks and months after Ryker was born, it seemed easier to just squeeze milk into his mouth until he got the hang of eating. The best bottle for this is the football shaped one made by <b><span style="font-family:Helvetica;color:black;"><a style="color: rgb(255, 0, 0);" href="http://pediatricmedicalsolutions.com/Mead%20Johnson.html">Mead Johnson</a>.</span></b> (see below) I would pair this bottle with the Pigeon nipple and we had magic!<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSPngOppg4GVdCLKrLD5ZF18yNUfRSyrH0ufzh-H-BaUjhVTwRs4kTnlg8bdnMm94owII7zev8Uvb3yTYm5r3USUGWBRK-JwCedHok2fnVfhwUQ1b9WilRE3qO3nzBnIr6fVFcOYBVDrNf/s1600/pr_bottles_and_nursers.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 256px; height: 298px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgSPngOppg4GVdCLKrLD5ZF18yNUfRSyrH0ufzh-H-BaUjhVTwRs4kTnlg8bdnMm94owII7zev8Uvb3yTYm5r3USUGWBRK-JwCedHok2fnVfhwUQ1b9WilRE3qO3nzBnIr6fVFcOYBVDrNf/s400/pr_bottles_and_nursers.jpg" alt="" id="BLOGGER_PHOTO_ID_5641133016839643570" border="0" /></a><br /></p> <p class="MsoNormal">Last one. Don’t buy your Pigeon nipples and bottles online. RIP OFF! Children’s hospitals have them in the pharmacy for WAY cheaper. And I strongly recommend getting as many as you possibly can the first few days after you have your baby, while your still in the hospital. They will give you a few free, but just keep asking for more, from everybody you see. And then hide those puppies and ask for more! Save yourself some cash. Trust me, you’ll need it. Utah peeps, Check out PCH! They have Pigeon nipples for under $5! Score!<span style=""><br /></span></p><p class="MsoNormal"><br /><span style=""></span></p><p class="MsoNormal"><span style="mso-spacerun: yes">Overall, feeding was so stinking frustrating. I hate to say it, but it was. I would be crying as much as Ryker was. Really. And just when we thought we got a grasp on things. Something would change. But we did find our niche. And we got through it, and now I have a boy that's to big for his britches....literally, he's a TANK! So I hope these tips help, and good luck!<br /></span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3404196291752427253.post-59814549407900564992011-04-05T14:25:00.000-07:002011-09-20T12:42:44.063-07:00Birth Day<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHUpZTGznuvJbyGxblzxkiS-mTVvqYcjyiNTjPUVwEssIyTZ4eG8sS-alhulh6TZgflFKll_YRzpOCvV32CGf8YL_x8Jp9Oi7tzzjXKudrNR-mAYF4fOCWWoEm7tIaeKuXHJQUhg5f61En/s1600/Ryker+birth+034+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 290px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHUpZTGznuvJbyGxblzxkiS-mTVvqYcjyiNTjPUVwEssIyTZ4eG8sS-alhulh6TZgflFKll_YRzpOCvV32CGf8YL_x8Jp9Oi7tzzjXKudrNR-mAYF4fOCWWoEm7tIaeKuXHJQUhg5f61En/s400/Ryker+birth+034+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592223436685732162" border="0" /></a>September 15, 2010, just before noon, Ryker Knox was born. He was 7lb, 9oz and 21 inches long. The delivery was perfect. Smooth, with no surprises. I felt as ready as I ever would be to meet our little boy and finally see what we would be up against. I was so completely excited and thrilled, and though I hate to admit it, scared. Not of the delivery, not of the pain, but scared of how severe the cleft was actually going to be, and how I would feel once I actually saw it.<br /><br />I had set myself up for the worst case scenario. Meaning a wide cleft through the lip, palate, and gum line. I looked at millions of cleft photos in weird attempt to desensitize myself, which, I actually recommend. I was preparing for the worst, and hoping for the best. That way, I thought I would be pleasantly surprised when it wasn't as severe as I had planned for.<br /><br /><br />Well, It was EXACTLY what I had planned for. Ryker had a relatively wide cleft....all the way through. Lip, gum line, and full palate.<br /><br />I am so grateful I did what I needed to do to prepare myself, and really, it made a HUGE difference for the better in how I felt. But I still couldn't escape the fact that my heart was broken when it was confirmed that it was indeed, exactly what I had expected.<br /><br />I desperately wanted Ryker's Birth Day to be a celebration, not a day for mourning. But in truth, it was a day for both. I knew what the full cleft would mean to my precious little baby and my family. It meant more procedures and surgeries over a longer span of time, more heartache for Ryker's discomfort and pain, and more struggle for my family as a whole. But it was what it was, and we were a team from day one. And a strong team at that! It wasn't what I had hoped for, but we were ready.<br />These feelings lingered the entire time I was in the hospital but quickly were overshadowed by my absolute, unconditional love for this perfect addition to my life. He really was darling, EXTRA wide smile and all. We were so excited for our little man to finally be here! We were so grateful for him and couldn't wait to be his advocate.<br /><br />I was not thrilled by the situation, but emotionally, I was at a point of absolute assurance that I could handle it. WE, could handle it. And we could handle ALL of it. Whatever IT was.<br /><br />I knew Ryker would be a rockstar. And he has been.<br /><br />Okay, so here are the nitty gritties. I think emotionally preparing yourself, as best you can, for the unexpected emotions, and situations you might face, is an absolute must. For me, I did this by learning about the worst case scenario, and then preparing myself for that, by expecting just that. For me, that worked well. We had a plan of attack all set up, and somehow that was extremely calming to feel like I had some control in an uncontrollable situation.<br /><br />This is our muffin Ryker Knox, and this is what a full unilateral cleft looks like.<br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvegLhvfCKZKwXCrmn6mOm1nDwq4-xrNusdGSO_gK31LagPlyeK9UNKaRdubd12tCc7FR6LuWrlUvdcPS8INRyfQhSau5LFVGcQGu2TLWrjOOS30DxM_e90TgZwQXc45den8k6XxFjb9cM/s1600/Ryker+birth+075+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 309px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhvegLhvfCKZKwXCrmn6mOm1nDwq4-xrNusdGSO_gK31LagPlyeK9UNKaRdubd12tCc7FR6LuWrlUvdcPS8INRyfQhSau5LFVGcQGu2TLWrjOOS30DxM_e90TgZwQXc45den8k6XxFjb9cM/s400/Ryker+birth+075+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592223429014550114" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz4uAwD34XTo5g6B4LI3AbjTeqw76ryvtCFdNex15KThsWFMiCPl4GMQU9fkgoLtLr01nUfuwzULo1oF3Frg0Prhx26-TDzrzgv-FceqQE_WfNhPVUzGIa3JZ1wtNsfSwMP6Svdywg-D4Y/s1600/Ryker+birth+057.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 267px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgz4uAwD34XTo5g6B4LI3AbjTeqw76ryvtCFdNex15KThsWFMiCPl4GMQU9fkgoLtLr01nUfuwzULo1oF3Frg0Prhx26-TDzrzgv-FceqQE_WfNhPVUzGIa3JZ1wtNsfSwMP6Svdywg-D4Y/s400/Ryker+birth+057.jpg" alt="" id="BLOGGER_PHOTO_ID_5592222877528659026" border="0" /></a>I asked the surgeon where Ryker's fell in severity. He said it was about a 6-7 with 10 being the worst. Bilateral are typically the absolute most severe. A bilateral cleft is where a cleft is on both sides. Almost always they can tell in the ultrasound if it is bilateral or unilateral as well as what side it is on.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVuZN1dOGZu5yx6Fakzk9fv3OlqojFanAuRxvWoCa-hKuxVY848E9d0R7VbxoQ02LOv3s5ZcRFtqcIZ6aJCZHZqPmGuYcXTYETdWO39zDDhRlqSM3ioMFUIlWt2AfVlpjQ-3KcFPch2XAy/s1600/cleft.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><br /></a><br />Fun Fact- Guess who had a cleft? Tom Brokaw! Yep! Crazy right? And that man is like 100 years old! Think of all the amazing new technology and procedures we have since he got his repaired! King Tut also had a cleft palate. Weird.<br /><br />Anyway, more pictures...<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikndN34twvvX3xUe3YyUsNdANgcf_TCh8T2ucG90WB9Uu0-KVOiq_gKZcjVGX41_Zu6L5X9t5S8dSqy9ZdVITyZFsAFGG5wneh6c2E3cFAuL-7ST809kK_2e2Q7bFhi42_pjy2eVmVxgGz/s1600/Ryker+birth+056.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 267px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikndN34twvvX3xUe3YyUsNdANgcf_TCh8T2ucG90WB9Uu0-KVOiq_gKZcjVGX41_Zu6L5X9t5S8dSqy9ZdVITyZFsAFGG5wneh6c2E3cFAuL-7ST809kK_2e2Q7bFhi42_pjy2eVmVxgGz/s400/Ryker+birth+056.jpg" alt="" id="BLOGGER_PHOTO_ID_5592222876863828338" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvFEWzteLDoscwjs-U0J8zQpM_fWAhkHhn4l3GVKW9-lK8_dn-MkwwvxYXQU5vYRGGx_BeyI5LqEd5dGXj4aC12lPrwtt4pb68q0oCO6dyMHDwnOJ57j44qxYHzaurDYlINoeDyNvD5HP1/s1600/Ryker+birth+043+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 301px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvFEWzteLDoscwjs-U0J8zQpM_fWAhkHhn4l3GVKW9-lK8_dn-MkwwvxYXQU5vYRGGx_BeyI5LqEd5dGXj4aC12lPrwtt4pb68q0oCO6dyMHDwnOJ57j44qxYHzaurDYlINoeDyNvD5HP1/s400/Ryker+birth+043+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592222305791900322" border="0" /></a>So pink and perfect. I was in love.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw24fvXeFNEoxoRYxSI3T-GfXL8-PXdW5VeZ5QGk51pDnNAI-22atOteaoOmezlmB5-GjS6hvRb6lPyVH4We7_TNB1OzxFa6qbwznNjQGe_UkUyy829w0fVfJx7vEQHEJyBlo2_hEkcQA1/s1600/455+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 310px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiw24fvXeFNEoxoRYxSI3T-GfXL8-PXdW5VeZ5QGk51pDnNAI-22atOteaoOmezlmB5-GjS6hvRb6lPyVH4We7_TNB1OzxFa6qbwznNjQGe_UkUyy829w0fVfJx7vEQHEJyBlo2_hEkcQA1/s400/455+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592221525422044098" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_32Y0Tctjqp-fB_C8zWeO14h-P-qdQZ4V4FQE0DVg3CXkfMPx9CSMjcRMLMUTCqmCnF-JC2n95DIApyudlxulLxQShEKlnkWPB4Sbgt1VIT778K7gVwhCPg7-HhOUFcrWCDNW3Na1NR5E/s1600/Ryker+birth+105+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 304px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_32Y0Tctjqp-fB_C8zWeO14h-P-qdQZ4V4FQE0DVg3CXkfMPx9CSMjcRMLMUTCqmCnF-JC2n95DIApyudlxulLxQShEKlnkWPB4Sbgt1VIT778K7gVwhCPg7-HhOUFcrWCDNW3Na1NR5E/s400/Ryker+birth+105+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592221514823070242" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMvHRLax1WW_ZKfdPsorPQwUWFGH4V360JvmW54d53KDMoWxnznXXY3dTmW_ypOlrVJziPxTuFJj4X0midXHwCUYj9Eol1j7g_b1_S8TvqPeOX8DG2SGRNKegWiH1jNdGos7VYrUVOTMur/s1600/Ryker+birth+108+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 344px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMvHRLax1WW_ZKfdPsorPQwUWFGH4V360JvmW54d53KDMoWxnznXXY3dTmW_ypOlrVJziPxTuFJj4X0midXHwCUYj9Eol1j7g_b1_S8TvqPeOX8DG2SGRNKegWiH1jNdGos7VYrUVOTMur/s400/Ryker+birth+108+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592221014780410930" border="0" /></a><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiSWWvZ2ss30sQq0as_FP3vOTWd5ry87FEJ9CYfbyFkWm3-AIOZF2demZA5RFTU7DqxXGGadkJgsc5ogy3956UUCV0n9awG9dCzQdjHd3v9C8B2lp_vhaD64Yg3zmpKn9L8-xdq8IaWJgI/s1600/Ryker+birth+112+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 321px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiiSWWvZ2ss30sQq0as_FP3vOTWd5ry87FEJ9CYfbyFkWm3-AIOZF2demZA5RFTU7DqxXGGadkJgsc5ogy3956UUCV0n9awG9dCzQdjHd3v9C8B2lp_vhaD64Yg3zmpKn9L8-xdq8IaWJgI/s400/Ryker+birth+112+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5592221011344597986" border="0" /></a>Me. One proud, excited, scared, nervously thrilled, ready for an adventure, mama. Hold on tight, here we go!<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8-WyFQHiBt2wjrtxfJrbydeayr8aPhDGGUOypybTlX5OtUwVqbC4y6xz64fTuX6qrz_RqXjhklUyZ-kzmrPDwfnrb1Q3PJBOuGKVjXg6gkQ2QuVy_0Z9zr3zZ-J6KcgV8EMRM5lIcGqG3/s1600/blur.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 303px; height: 400px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8-WyFQHiBt2wjrtxfJrbydeayr8aPhDGGUOypybTlX5OtUwVqbC4y6xz64fTuX6qrz_RqXjhklUyZ-kzmrPDwfnrb1Q3PJBOuGKVjXg6gkQ2QuVy_0Z9zr3zZ-J6KcgV8EMRM5lIcGqG3/s400/blur.jpg" alt="" id="BLOGGER_PHOTO_ID_5592220211645967554" border="0" /></a><br /><br /><br /><br /><br /><br />Okay. So I couldn't help it! I had to give you a sneak peek of our little stud at 7 months old. Don't you just want to squish him!<br /><br /><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6oiZePCwucCnDSc4ZvGGB1_mxr6tKc8RG_3keEoALEYay2LKSfet4bxCMXCLfkpQhPrfNxzxRYEIHQdOTQPa2QxLLcti5I4mUxrfU3eb1znnNHdDHVNDaHT_jkCFKVgNUJOZiemMMbQKS/s1600/Cali+trip+2011+029+edd.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 400px; height: 290px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6oiZePCwucCnDSc4ZvGGB1_mxr6tKc8RG_3keEoALEYay2LKSfet4bxCMXCLfkpQhPrfNxzxRYEIHQdOTQPa2QxLLcti5I4mUxrfU3eb1znnNHdDHVNDaHT_jkCFKVgNUJOZiemMMbQKS/s400/Cali+trip+2011+029+edd.jpg" alt="" id="BLOGGER_PHOTO_ID_5607146767109260818" border="0" /></a>Unknownnoreply@blogger.com5tag:blogger.com,1999:blog-3404196291752427253.post-13246907132826770472011-02-18T10:22:00.000-08:002011-09-20T12:22:15.064-07:00Finding a Doctor<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:donotoptimizeforbrowser/> </w:WordDocument> </xml><![endif]-->For us here in Utah, where we must have poisoned water or something, clefts are a rather common occurrence. In fact, it is the most commonly diagnosed defect in babies, and that applies nationwide. Over all, clefts are just really common. But you would never know it thanks to everything we have available to correct them so early in life. <p class="MsoNormal">Okay, I have to stop here. I hate using words like “defect” or “correct” because it makes parents of children affected by a cleft, myself included, get a bit defensive. It’s hard to try and explain how my own emotions are so completely contradicting.<span style=""> </span></p> <p class="MsoNormal">The fact of the matter is that my child did not develop completely correctly. That’s the cold, hard, truth.<span style=""> </span>But somehow I look at him, before surgery, and though I desperately want to “fix” it both for appearance as well as functionality. I find myself feeling like my child is perfect just the way he came to us, with his heart-melting, EXTRA big smile, I absolutely love and adore him just the way he came.<span style=""> </span>It’s a strange emotional battle with myself. On one hand we have these babies that, in a sense ARE perfect. They are ours, and they are absolutely perfect to us.<span style=""> </span>They are just the way they should be…kind of. Maybe it’s just me, but it's such tricky emotion how I feel about this. I can barely explain how I feel to myself.<span style=""> </span></p> <p class="MsoNormal"> I guess the only way to sum it up is this. You will cry with such conflicted emotion the day your child has the surgery for the lip and nose repair.<span style=""> </span>You will be astonished and relieved that he looks “normal,” and yet you will miss the perfect face you fell in love with.</p> <p class="MsoNormal"><span style=""> </span>I did, and I bet you do too.</p> <p class="MsoNormal"> So, please excuse my use of words such as “normal,” “correct”, or “defect”. They are indeed, absolutely accurate, and I know it. Yet somehow they don’t completely fit. If you are a mother or a father of a child with a cleft, I imagine you relate. I hope you do, because it’s comforting to feel like were all drinking the same purple punch.</p> <p class="MsoNormal"> Sooooooooo, back to finding a Doctor.</p> <p class="MsoNormal"> Though I imagine that it is pretty much a similar process in most locations in the US, the way it works for us cleft parents in Utah is this;</p> <p class="MsoNormal"> You are informed of the situation.</p> <p class="MsoNormal">You are put in contact with a grief counselor.</p> <p class="MsoNormal">Your grief counselor and/or the ultra sound tech will inform your personal OB, and the local children’s hospital of your families “situation.”</p> <p class="MsoNormal">Your OB might call you to see if you’re “okay.”</p> <p class="MsoNormal">Someone on the “cleft team” at the local children’s hospital will contact you and set up an appointment to meet.</p> <p class="MsoNormal">At this appointment they will go over all the information you already learned online from your hours of research. You will smile politely and act like this is all new to you, and if you're lucky, some of it might be. </p> <p class="MsoNormal">They will give you a list of local doctors who specialize in cleft repair from which to choose. </p> <p class="MsoNormal">Ahhhhhhh….the list. </p> <p class="MsoNormal">They will try to answer your questions. </p> <p class="MsoNormal">You will be frustrated that no one really can. </p> <p class="MsoNormal">No one can tell you how feeding will work. No one can tell you how many surgeries it will take. No one can tell you how severe the cleft will be. They will tell you all the things that may or may not happen.</p> <p class="MsoNormal">You will be frustrated that you will just have to wait and see, and do a lot of trial and error.</p> <p class="MsoNormal">The not having all the answers will drive you crazy if you let it. So you won’t. (refer to last post:)</p> <p class="MsoNormal">You will then begin one of your first proactive activities. Yippee!</p> <p class="MsoNormal">You will go home and you will research the list of doctors.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">I read reviews of doctors from patients. I looked at websites and photos of their work. I checked to see how many cleft repairs they have done, and continue to do. Were they involved in any programs like Operation Smile, or Smile Train? That mattered to me. (Google these if you don’t know what they are.) Did they take my insurance? I researched each doctor's particular methods and timing for surgeries and recovery. Trust me, they all have a different ways of doing things. I even had a chance to talk to some of the nurses who work at the children’s hospital, and get their personal favs, and reasons for their preferences.<span style=""> </span></p> <p class="MsoNormal">I narrowed it down to two doctors. I made appointments.</p> <p class="MsoNormal">You have to meet the person who you and your family will be working with closely for the next decade or longer. You really do. You need to make sure that this doctor is the right choice for you, and your family. Meet at least a few doctors. You will know the surgeon that’s best for your little monkey. </p> <p class="MsoNormal">I not only met a few potential Doctors, I fully interviewed them. Really. I even had a list of questions with me that I wanted to ask. I started it weeks before the first meeting and kept adding to it each time I would think of something I thought of something important.<span style=""> </span>Then at my appointment I whipped out my list and went to town. </p> <p class="MsoNormal">Meeting with Doctors will cost you most of the time. Find out when you set the appointment. Normally its the cost of a co-pay. So narrow your choices down to 2-3 then go in with your own list of questions. It’s soooo worth the money. </p> <p class="MsoNormal">Ultimately, we went with <a href="http://www.louismoralesmd.com/">Dr. Louis Morales.</a> This is him, holding Ryker at our first Surgery at Primary Children’s hospital.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_-xgQPNoCe4iwLrFxQ1ua9LPaJP9AUwf7qrQin2i0vFVDXD-Bn0fjhqGzosvNGinRldNLhzEA8eGvP1PnjAgkL5SIhhTpN2yi2aBso5uz8cJlvk7HluIW0oJge5ecLLE4QwqQqjz2Rz19/s1600/oct+nov+001+blog.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 341px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_-xgQPNoCe4iwLrFxQ1ua9LPaJP9AUwf7qrQin2i0vFVDXD-Bn0fjhqGzosvNGinRldNLhzEA8eGvP1PnjAgkL5SIhhTpN2yi2aBso5uz8cJlvk7HluIW0oJge5ecLLE4QwqQqjz2Rz19/s400/oct+nov+001+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5575099141198196114" border="0" /></a><br /></p> <p class="MsoNormal">When we went in to meet with him for the first time, we waited in the lobby at the children’s hospital. Like I have said before, that waiting room is an incredibly humbling place. The waiting room serves about twenty doctors, so you have children affected in every way waiting to be seen or treated. We looked around and I suddenly felt guilty for the pity party I had been holding off and on in my head about our family’s situation. I realized how good we actually had it. I offered a prayer of pure gratitude right then and there. I was so grateful that my trials were my own. </p> <p class="MsoNormal"> There was a little boy running around in front of his Mom and his Grandma about ten feet in front of us.<span style=""> </span>He was darling. About two years old, he was a little stud. I watched him play for about 15 minutes and I couldn’t help wondering why he was at the hospital. He was an active, healthy kid. I didn’t see any siblings, so he must be here for himself.<span style=""> </span>When I asked my husband why he thought this little dude would be here, only then did we both see the tiny, barely noticeable scar on his lip. We had been watching him for twenty minutes and never even noticed! He once had a cleft. Then his mother called out to him “Ryker, stay over here.” </p> <p class="MsoNormal"> Yep, the little boys name was Ryker. </p> <p class="MsoNormal"> The same name we had just decided on for our own son a few days before. Creepy, right?! I almost lost it. Here was this little boy who was so happy, healthy, and so absolutely perfect. It gave me such hope for us, and our child’s future. I know in my heart that this was a small tender mercy from God. A tiny glimpse of what it could be for us. I beamed for a week from that little encounter. And when we finally went in to meet Doctor Morales, I was on my own personal high. </p> <p class="MsoNormal"> The following are some of the questions I asked the doctors we interviewed. I had done a lot of research at this point so I had very specific questions.</p> <p class="MsoNormal">Do you take our insurance?</p> <p class="MsoNormal"> How do you bill?</p> <p class="MsoNormal"> What is your timeline for lip and palate repair surgeries and how flexible are those timeframes?</p> <p class="MsoNormal"> What are your specific methods of lip and nose repair?</p> <p class="MsoNormal"> What are your specific methods of palate repair?</p> <p class="MsoNormal"> Do you use any unique methods for surgery you find beneficial?</p> <p class="MsoNormal"> What are your recommended procedures for recovery? </p> <p class="MsoNormal"> Do you use No No’s, a Logan's Bow, binkies, etc. If so how long do you use/wear these? </p> <p class="MsoNormal"> How long will we be in the hospital with each surgery? </p> <p class="MsoNormal"> Do you do any special scar treatment?</p> <p class="MsoNormal"> Do you recommend ear tubes, and why?<span style=""> </span>Will you allow another doctor too put them in at the same time as another surgery?</p> <p class="MsoNormal"> How often/how many do you perform these surgeries (per year)?</p> <p class="MsoNormal"> Do you offer any kind of service to Opp Smile or Smile Train, or the like?</p> <p class="MsoNormal"> Is there anything special to set you apart from other doctors?</p> <p class="MsoNormal"> Do you have pictures of before and afters?</p> <p class="MsoNormal"> I’m sure there are plenty other really good questions to ask, decide for yourself what you want to know. As important as getting your questions answered is, just feeling out your doctor is a major part of your decision. How do you like his bedside manner? Does he take the time to explain things to you? Do you see him being a good team member in your child’s cleft adventure? Bluntly, do you like him? Overall, how does your parent radar react? </p> <span style=";font-family:";font-size:12pt;">Once we decided on our Doctor, it was such a relief. It felt so good to have taken one of the first, most important steps. Now we had a direction and confidence in the process because we had confidence in our doctor. One step down, 1,653,987 to go! Just kidding, but sometimes it does feels like that, and that’s okay, I guess.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3404196291752427253.post-75570311197183387842011-02-15T14:50:00.000-08:002011-09-20T10:49:25.278-07:00Research<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjve2xEg1SJpShMT6l28pNh836V1glc18n8q_Y_xUU-RY1Dq9qD4A5vD-0V6Ph4dfnqTYQBk5qLJ6on5PwFV26xuwjv9QRD5dYrAvQH4UbiHycMgNwAc88oq6n9kmY8C8LyyVaHgO5sm0Aj/s1600/imagesrsf.jpg" onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 205px; height: 246px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjve2xEg1SJpShMT6l28pNh836V1glc18n8q_Y_xUU-RY1Dq9qD4A5vD-0V6Ph4dfnqTYQBk5qLJ6on5PwFV26xuwjv9QRD5dYrAvQH4UbiHycMgNwAc88oq6n9kmY8C8LyyVaHgO5sm0Aj/s400/imagesrsf.jpg" alt="" id="BLOGGER_PHOTO_ID_5641129884041888930" border="0" /></a><br /><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:donotoptimizeforbrowser/> </w:WordDocument> </xml><![endif]--> <p class="MsoNormal"><br /></p> <p class="MsoNormal"></p><p class="MsoNormal">Okay, time to get educated. Like I said before, one of the first things I did was to research as much as I could about cleft lips and palates, until I felt like I had a firm grasp on the topic. And good golly miss Molly, how the internet can be a double-edged sword. I found all the “in your face, no sugar coating it” type of stuff. Which was good and bad. I found pictures that would break your heart, and photos of repairs that would blow your mind. It was scary to learn about the most extreme cases not knowing if Ryker would be one of them. All the surgeries, procedures, and problems he MIGHT have. So I decided to follow some sound advice. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">Prepare for the worst, and hope for the best.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Under promise, over deliver.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">And, my personal favorite, Expect everything unexpected. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">Meaning, just be prepared to go with it, whatever “it” may be. That was our only choice and I cannot tell you how much peace embracing this idea has brought us. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">EVERY SINGLE ONE is different. Each child, each cleft, each Doctor treating each child, and every situation. All different. And just when you think you have a plan, and you have it all under control, it will change. But really, is that so different from parenthood in general, in life in general? </p> <p class="MsoNormal"> </p> <p class="MsoNormal">Do your research, absolutely do. But don’t go nuts! And remember to take everything with a grain of salt. No matter how much research you do, you still will serve yourself and your child best by just being flexible. As much as I wanted a perfect step by step plan in the treatment of my child, I have discovered that my sanity survives by only focusing on what’s directly in front of me. </p> <p class="MsoNormal">Sometimes, I can focus on months at a time; sometimes all I can see is tomorrow.</p> <p class="MsoNormal">If you don’t do this, you will feel like you are playing a game where the rules are ALWAYS changing, because, trust me, they are.</p> <span style=";font-family:";font-size:12pt;">Really, instead of “Step by Step Cleft”, I should call this blog “One Step at a Time, Cleft!” Because that’s really is the best way to do it!<br /><br /></span>So go out there and get educated, kids! The word "cleft" in Google should do the trick!<br /><span style=";font-family:";font-size:12pt;"><br /><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3404196291752427253.post-88518537225205982052011-01-18T19:38:00.000-08:002011-09-20T10:47:25.331-07:00Being "Okay" With It<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:donotoptimizeforbrowser/> </w:WordDocument> </xml><![endif]--> <p class="MsoNormal">I love being Prego. Really, I do. I don’t get sick. I don’t throw up. I don’t get too uncomfortable.</p> <p class="MsoNormal">Me and pregnancy, we’re buds. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">Okay, all of you who pregnancy is your mortal enemy, take a moment to hate my guts so we can move on. If it makes you feel any better, I may have been dealt the “great with pregnancy” card, but I was apparently absent when the<span style=""> </span>“nice butt”, and “tolerance for others” cards got handed out. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">Anyway, I was sad to discover that after I found out about the baby’s cleft, a little bit of my enjoyment about being pregnant seemed to vanish. And in its place, a flavor of bitter-sweetness soon took over. </p> <p class="MsoNormal">Though physically I was still having a rock star pregnancy, emotionally I was in mourning. Every time I would get excited about the baby, the sweet. I would quickly remind myself of what we were going to have to go through with him, the bitter.</p> <p class="MsoNormal"><span style=""> </span>I was mourning to loss of the option to nurse. I was mourning the loss of a husband only excited about his littlie buddy, not worried about him. I was mourning the loss of the idea I had in my head of what it was supposed to be like. How would this affect my child in this already sucky world? I was mourning the idea of a “perfect” birth day, because now it was slightly spiked with the reality of the situation. I would actually, finally see how bad Rykers cleft was. Was it just the lip? One-two surgeries. Was it the palate too? 4-5 surgeries. I was so concerned about what this would mean for Ryker. And, oh my gosh, how scared I was at how I would react at seeing my little man for the first time. How my husband would react. How we would both feel. </p> <p class="MsoNormal">I knew how I <b>wanted</b> to be, I knew how I <b>wanted</b> to feel. And I was dead set on “being okay” with the situation. And after a bit of time and a dose of reality, I really am.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">The day I found out I was a wreck. God and I were NOT on speaking terms. I was mad. I was sad. I was scared. </p> <p class="MsoNormal">I cried. I wallowed. I had a rather good pity party.</p> <p class="MsoNormal">These were real emotions. And you know what? They were justified. But by day two things started to shift. I started to accept my newly changed reality. </p> <p class="MsoNormal">I got active. This was the situation, and I wanted a plan of attack. So where do we all go for information overload? Why, the Internet of corse!</p> <p class="MsoNormal">I started researching anything and everything I could about clefts. I wanted to know it all. And yes, some of it was scary, but If we were going to deal with this I was going to be grossly over prepared. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">So at this point I’m sure it won’t shock you to find out I’m a bit of a control freak.</p> <p class="MsoNormal">HOA president, own my own business, alphabetize my kids toys, yup, you know the type. So let me tell ya, this little unplanned event was just what the doctor ordered. Really! I couldn’t control it. In fact this whole cleft ride is all “play it by ear.” And its good for me…I guess.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Anyway, about a week after we found out about Ryker, my husband and I went away to Mexico for a week, just the two of us. We had had this trip planned long in advance, but the timing turned out to be a blessing. We were able to get away and clear our heads. It was on this trip that God and I made up, and I made my peace with our new adventure. It was also on this trip that I recognized the immense blessings I had surrounding me on a daily basis. I felt the breath returning to my lungs.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">A month later we sat in the waiting room at Primary’s Childrens Hospital. We were there to interview a surgeon who does cleft repairs. There is nothing more humbling then sitting in a waiting room at a children’s hospital. We sat with families who were there for all kinds or reasons. It was there, in that waiting room, that I realized I had a child with a <b>temporary, correctable situation</b>. How lucky was I? This was not the case with so many of these families. That was the day that I made the complete shift in my perspective. </p> <p class="MsoNormal"> </p> <span style=";font-family:";font-size:12pt;">I realized that yes, having a child with a cleft really sucks. It does. And yes, it’s going to be really hard on me, on my family, and on my child. But I can handle it. We can handle it. You can handle it. And I plan to do it with a little grace and a lot of flair. </span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-3404196291752427253.post-82573131038124631652011-01-17T14:35:00.000-08:002011-09-20T10:44:42.487-07:00Honey, I’m Home…<!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:donotoptimizeforbrowser/> </w:WordDocument> </xml><![endif]--> <p class="MsoNormal"> I walked in the door of our home with eyes red and swollen, from bawling the whole drive home from the Doctors office. I’m kind of surprised I made it home alive, considering I couldn’t really see through the flowing tears. You may have thought I would have called my husband, Allan, and told him as soon as I found out about the baby. But I didn’t. </p> <p class="MsoNormal">I couldn’t.<span style=""> </span></p> <p class="MsoNormal">In some weird way I felt like I was protecting him, even if it was only for a small time. </p> <p class="MsoNormal">If he didn’t know, it wouldn’t hurt him. </p> <p class="MsoNormal">Funny how the knowledge of something can cause actual physical pain. </p> <p class="MsoNormal">Plus, I was scared to tell him. Would he be mad? At me? Or would he just be sad and worried and disappointed? Would he think I had done, or not done something to protect our precious cargo? Would he think it was my fault?</p> <p class="MsoNormal">Was it?</p> <p class="MsoNormal">I couldn’t answer his questions, because I couldn’t even answer my own.</p> <p class="MsoNormal">On the way home I thought about how I would tell him. I would cry my eyes out, pull myself back together, and calmly inform him in the small change of plans.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Yeah right! …That is soooo not what happened.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">I was a major wreak when I got home. I sat in the car for a long time, trying to calm down, but I just couldn’t.</p> <p class="MsoNormal">Finally I walked in the house. Allan heard me come in, and met me at the door. When he saw the mess that once was his wife, he grabbed me and held on. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">“Is something wrong with the baby?”</p> <p class="MsoNormal"> </p> <p class="MsoNormal">He got his answer when, for a good five minutes, I clung to him and sobbed. </p> <p class="MsoNormal">It felt really good to get it all out. So when my tear ducts were empty, I told him. </p> <p class="MsoNormal">It was SO hard to tell him.</p> <p class="MsoNormal">He had mountains of questions, just like me. He was shocked and upset and concerned. But he didn’t break. And I really need him not to break that day. </p> <p class="MsoNormal">He was strong for both of us. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">Allan is a very even keeled kind of guy. We balance each other out. He is the perfect yin to my yang. Not super emotional, rarely yells or freaks out, and almost never will have a meltdown. He wears his heart on his sleeve, and calls it like he sees it. He’s calm, funny and very chill.<span style=""> </span>He takes his cards, and does the best he can with them. He is the perfect person to handle any kind of situation, because he is adaptable. I couldn’t imagine going through this challenge without him. We really do make a great team, but even so, this little adventure still sucked for him as much as it did for me. And as much as I saw on the outside, I wasn’t in his head. Many of you have husbands/wives or significant others going through this right along with you. How are they doing? Ever wonder what they are really thinking and feeling? Well, stop wondering. </p> <p class="MsoNormal">Ask.</p> <p class="MsoNormal">You are a team in battle for the good of your child! Cheesy, I know, but true. Talk openly about it and be each other cheerleaders and shoulders to cry on. Trust me, you'll need both.<br /></p> <span style=";font-family:";font-size:12pt;"><br /></span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-3404196291752427253.post-85779593501676245742011-01-14T13:27:00.000-08:002011-09-20T12:35:14.448-07:00“I think this baby has a cleft lip…,”<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih9YW3k7_4N30Ki-UZ78-iHxUzi8u8rsN0v0Vqvfjuy3ZDSPY4HX3fqq2AZ8fMrEYb1HXWz01r8XrL5t5gtc4-rfSievwT4j2ToBW_NbtRWv8cUhBe0_lUrUq6ity-BQJW0ah7moYEKUmU/s1600/rabbit+1003_edited-1+blog.jpg"><img style="display: block; margin: 0px auto 10px; text-align: center; cursor: pointer; width: 400px; height: 258px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEih9YW3k7_4N30Ki-UZ78-iHxUzi8u8rsN0v0Vqvfjuy3ZDSPY4HX3fqq2AZ8fMrEYb1HXWz01r8XrL5t5gtc4-rfSievwT4j2ToBW_NbtRWv8cUhBe0_lUrUq6ity-BQJW0ah7moYEKUmU/s400/rabbit+1003_edited-1+blog.jpg" alt="" id="BLOGGER_PHOTO_ID_5562157777471231890" border="0" /></a><!--[if gte mso 9]><xml> <w:worddocument> <w:view>Normal</w:View> <w:zoom>0</w:Zoom> <w:donotoptimizeforbrowser/> </w:WordDocument> </xml><![endif]--> <p class="MsoNormal"><span style="font-family:georgia;">“I think this baby has a cleft lip…,”</span> said the doctor in a very calm, nonchalant tone. I was at my 20 week ultrasound, all by myself, and I suddenly felt like I couldn’t breath. Sound familiar?</p> <p class="MsoNormal"> </p> <p class="MsoNormal">Let me back up a bit. </p> <p class="MsoNormal">My husband and daughter had come with me a week prior to my FIRST 20 week ultrasound. Everything looked good, but they couldn’t see the baby’s face. They could see the profile, the top, and the view from underneath. But they couldn’t get a straight on shot.<span style=""> </span>Baby boy just wouldn’t cooperate. Because they had seen everything else they needed to see, and what they did see looked perfect, they almost didn’t have me come back. But when they decided to do a follow-up ultrasound, I didn’t complain. I was thrilled at a chance to see my baby again. It never crossed my mind that there might be a problem. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">A week later, I went back in for my follow-up, minus one husband and one 2-year-old daughter . There was, after all, no reason for them to come with me. </p> <p class="MsoNormal">The nurse did her thing. We got the view we needed and she casually said the doctor would be right in. The doctor did his thing, and then very casually dropped a bomb on me. (Refer to the above) The first thing I said, in a very weak voice was “Are you kidding?” He responded with a casual, "No", and tried to point it out to me in the blur of back and white on the screen.<span style=""> </span></p> <p class="MsoNormal"> </p> <p class="MsoNormal">I did pretty well… for the first few minutes anyway.<span style=""> </span>I was very calm. I immediately bombarded the doctor with questions. As far as I was concerned cleft lips were 3<sup>rd</sup> world country problems. Did he not realize we were in AMERICA? I mean really, my only knowledge about clefts came from the operation smile infomercials. It definitely didn't happen here, and it absolutely did not happen to MY baby.</p> <p class="MsoNormal"><span style=""> </span>He proceeded to tell me that, in fact, he sees a cleft about 2-3 times a month and that it’s the most common birth defect. Okay, that explains the casual attitude, but didn’t he realize that this was MY baby he was talking about? MY child? And then I asked the question that every Mother who has shared a similar experience desperately wants the answer to be “no”. </p> <p class="MsoNormal">“Are you sure?”</p> <p class="MsoNormal">And like all the responses to all those Mothers in mirrored experiences,<span style=""> </span>“Yes, I’m sure,” hit me like a ton of bricks.</p> <p class="MsoNormal">That’s when I lost it.</p> <p class="MsoNormal"> </p> <p class="MsoNormal">The doctor left, explaining that the grief counselor would be right in. There I was, in a dark room, all alone, sobbing so hard I simply couldn't catch my breath. </p> <p class="MsoNormal"> </p> <p class="MsoNormal">For those of you reading this, I may have just hit a nerve. This account may be all too real for a few you. And it’s in part because of those few of you, that I started this blog. </p> <p class="MsoNormal">Also, I wanted to have someway to document our personal journey with Ryker, our son. I wanted something for him to look back at and read, so he could never question how much we love him. We have, and will do anything for him.<br /></p><p class="MsoNormal">It is my deepest desire that this blog will be a useful tool in your personal journey. I warn you, I am not a doctor, and I’m not a specialist. I’m just a Mom who thinks that just maybe, I can offer some insight, information, tips and camaraderie to those of you just starting your unique path. </p> <p class="MsoNormal">There is something that binds us when we feel the same pain. We like to know that there are others out there have the same battle scars that we have.<span style=""> </span>It gives us strength to know that we are not alone in our struggles. And to you, you are not alone. You are among some of the strongest women out there. It was some of these women, sharing this same journey who gave me strength when I needed it.<br /></p><p class="MsoNormal">You will get through this. HOW you get through this is up to you. </p>I promise you one thing, you are so much stronger then you think you are, only someone like you could handle this.<p class="MsoNormal">I don’t know if what I have to say will actually help anyone. I’m completely a spaz, I talk way to much, and most of that is out of my ass, but even if this blog ends up being just for Ryker. I know my time journaling will be well spent.<br /></p> <p class="MsoNormal"> </p> <p class="MsoNormal"> </p>Unknownnoreply@blogger.com11