tag:blogger.com,1999:blog-52633642156776173492024-03-19T06:07:58.769-07:00Our HLHS spunky monkey XanderWaters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.comBlogger51125tag:blogger.com,1999:blog-5263364215677617349.post-6754309334638013562012-07-19T17:32:00.001-07:002012-07-19T17:32:38.651-07:00Giving back on Xander's 1 year anniversary of his second open heart
surgery.Today, July 19th marks Xander's one year anniversary of his second heart surgery. So in celebrating this milestone Nick and I gave back by donating blood. What better way to celebrate the gift of life.<br />
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I'd be lying if I said I wasn't at all emotional this week over this, because truth be told it doesn't matter how long it's been it's still hard to think of it all and remembering all of the emotions that were there that day. What can I say he's turned me into a blubbering softy.<br />
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We said goodbye to our OT the other week. Xander is now up to speed and is walking everywhere, heaven help me!<br />
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Remember this, when faced with challenges always remember that god is right there to lean on, never feel you are alone!<br />
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Oh and by the way, for those of you that know my husband know that this man is AFRAID of needles like no other. I have to admit I am super proud of him by swallowing that fear and having that needle stuck in his arm to give blood today for his first time!! Such a trooper!!<br />
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<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrV50-ugtG6ua3Ag7cDd36fGtYKZD9H8dTZo686pwrjD8iz-B9gYy0tMLvAgc_4l6iUkSSAhTZ83PCrn2K22tauI19qNeZE6IsEkqccgDggpseHE_Wbk3vsJDmk-QgZ2vl5nU-DqDbp2hB/s640/blogger-image-550508541.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrV50-ugtG6ua3Ag7cDd36fGtYKZD9H8dTZo686pwrjD8iz-B9gYy0tMLvAgc_4l6iUkSSAhTZ83PCrn2K22tauI19qNeZE6IsEkqccgDggpseHE_Wbk3vsJDmk-QgZ2vl5nU-DqDbp2hB/s640/blogger-image-550508541.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-53330663247316949132012-06-04T13:47:00.000-07:002012-06-04T13:47:11.940-07:0016 months!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3JN-b44DejxHdbqOuq8GxnRBjiKGvGcBF_6ImLGjyL40k4P12rUw2m3J7QCQD_8tb1H-NHBj-ZrYf6OO40lVPFwQYFPwYblP-AShIeU4_GEmaV1-plZiK72J_NsqFVNmY4XjPt75e060P/s1600/Xander.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh3JN-b44DejxHdbqOuq8GxnRBjiKGvGcBF_6ImLGjyL40k4P12rUw2m3J7QCQD_8tb1H-NHBj-ZrYf6OO40lVPFwQYFPwYblP-AShIeU4_GEmaV1-plZiK72J_NsqFVNmY4XjPt75e060P/s320/Xander.jpg" width="320" /></a></div>
O my goodness where to start all all the progress we have made since our last post, so please forgive me if I repeat myself as I really did not go over the last post before writing this one.<br />
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You know how you sometimes come across a breath taking scene or even a moment and you want to capture that moment for a life time just so that you can look back on it and remember that feeling it gave you. I had a moment like this Saturday. Xander turned 16 months old, I watched him crawl around and just play his little heart out all day but it wasn't until he looked at me with his devilish little look he likes to pull right before he does something he knows he shouldn't, right then i seriously had one of those movie playback moments lol. I saw everything that he had gone through, the ups and the downs, the tears and the laughter through out the first 16 months of life and it made me smile to just think of how AMAZINGLY strong my little warrior is and how determined he is to be here with us.<br />
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Its moments like those that really take your breath away, and remind you what you should really be thankful for in life. Its taken along time for me to realize what is and is not important and a lot would say that family is the most important in life and as I would agree on this I don't 100% only because not all family is grand, but I do know that our little family means the WORLD to me and I will never take it for granted again, but what I realize is the most important is LIFE and how we live it, Xander is the biggest teacher on LIFE and what can be accomplished when you have the will.<br />
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Xander is walking around with the couch ( please someone knock him down if you ever actually see him walking with out the couch ;) It's great to see him move around so quickly as he does but momma just is not ready for him to do it on his own. He is 100% feeding himself these days and LOVES everything you give him to eat and yes even crayons ( thanks to his older brother Anthani).<br />
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As the months continue to keep flying past us we are determined to make this summer the best one we have had in a LONG time. We were not able to do much last year since Xander had gone in for his Glenn procedure in July. So it will be lots of fishing, swimming, camping and new family traditions being made for life time of memories.<br />
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O and before I forget Xander has become a very opinionated little booger ( like we did not see that coming right.) He does not like it when you tell him no-no ( like any other kid of course) but the face he pulls with it makes you laugh. When one of his siblings is being reprimanded he has to put his 2 cents in at the end. <br />
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August will be his next cardi visit but I am sure everything will be just fine and I am sure I will worry as always 3 days before but hey I am the mom so I can!<br />
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Enjoy your summer everyone because this Waters Family is going to have a BLAST!<br />
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<br />Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-73080710916060469522012-04-04T21:49:00.001-07:002012-04-04T21:49:17.207-07:0014 months14 months! 14 months of ups and downs, laughter and tears, but 14 months of smiles, trials and experiences I'll never give back!<br />
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Xander amazes us everyday and yes I know I say that so much but really it's the truth. My cousin put it in such away that it really hit me, the words she spoke. " when you look at someone you can just see their meaning, the glow of sadness, happiness, wisdom etc. but when I look at Xander Sharrell, I see meaning. The glow about him just escapes him and takes your breath away, it's truly amazing". <br />
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After she stated this I literally looked at Xander and just stared at him. I watched his every move and finally he looked at me and just smiled and right at that very moment there it was, the glow and meaning that just surrounds his body in everyway. His blue eyes just shimmer at you and you can't help but just smile at him. <br />
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My family is extremely blessed to have him in our lives and be able to experience everything with him. <br />
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We have become such an advocate for him in our own little ways and yes some still don't get why we do the things we do for him or why we get so irritated or "blow things out of proportion" when others really should no better.<br />
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We do these things because we love him and want to help build him to be strong enough to move on. <br />
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We know we can't protect him from everything but we do what we can . <br />
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Some will never truly understand what it's like and will hold judgement and that's ok because they don't fully understand. <br />
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We have been given a gift and that gift is a wonderful, beautiful boy who is our warrior in so many ways!<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZPsaQStcrVTcBSegED2sB8KQ2yrR1mNdeDR_PE8wzlt5tG0fWxaZ4MHyZQi0EP_tFGAwvZS6ZPQQucm5jEM7DppmmJOTx1IyYe3AlGoOAsaPhPLRTDqGVlptJSFOiwPziAgZACfrry4CI/s640/blogger-image--1053975478.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZPsaQStcrVTcBSegED2sB8KQ2yrR1mNdeDR_PE8wzlt5tG0fWxaZ4MHyZQi0EP_tFGAwvZS6ZPQQucm5jEM7DppmmJOTx1IyYe3AlGoOAsaPhPLRTDqGVlptJSFOiwPziAgZACfrry4CI/s640/blogger-image--1053975478.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMnYGKZGjRaRK1lhkD-t7-UhXdc__x7DV_ePbBEVz9BPndsMF7g6AO__MIt3G1DhosUg_2zpuiDLjt-1VJ0SxP2OOnZ1jUYpJ27q4rFliUqgpdGSPx5V_VAZ2czoNj3lhChuT4WBKdvDEr/s640/blogger-image-144994419.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMnYGKZGjRaRK1lhkD-t7-UhXdc__x7DV_ePbBEVz9BPndsMF7g6AO__MIt3G1DhosUg_2zpuiDLjt-1VJ0SxP2OOnZ1jUYpJ27q4rFliUqgpdGSPx5V_VAZ2czoNj3lhChuT4WBKdvDEr/s640/blogger-image-144994419.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkLASCUt_muPRcFZpCdFROw82q9hzNNiz3C5bn6aZMXHc5Rg5WU35JtCrpU5imRoYxvuKeFopWW8VfT6fcByIKUhc3lXY5unUhPE6jF4L5RIUE7ERhkV2h0p7A1pf3euoO800tK0f3O698/s640/blogger-image--1817186156.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkLASCUt_muPRcFZpCdFROw82q9hzNNiz3C5bn6aZMXHc5Rg5WU35JtCrpU5imRoYxvuKeFopWW8VfT6fcByIKUhc3lXY5unUhPE6jF4L5RIUE7ERhkV2h0p7A1pf3euoO800tK0f3O698/s640/blogger-image--1817186156.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggEqEMPNNali-pebvhbhzhN4cME-DekAJwIqCcECFeh9kb2SaY1V0aCd0l1YSMouq0sw70ndaBqvt_gIQrhvOxskChnr5UCCRiCcBR2ylHHaPZ1lAVCRJdRq3UUlTPjt5xANlNcRPF2RGE/s640/blogger-image--350852492.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEggEqEMPNNali-pebvhbhzhN4cME-DekAJwIqCcECFeh9kb2SaY1V0aCd0l1YSMouq0sw70ndaBqvt_gIQrhvOxskChnr5UCCRiCcBR2ylHHaPZ1lAVCRJdRq3UUlTPjt5xANlNcRPF2RGE/s640/blogger-image--350852492.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin4hT8-8Mm0Hkem5DIrF-7Mm0AEDj_oG31K2WsgDTFmowxKj9HvRjRS9-ioI1hPxTNIzAvbgZJk6TvDZpgqbelFT-zn501gfNUbk3KnHGnkEAstllrcMZl3CYRDu_usVIghQsbHmgY5a_Z/s640/blogger-image--727977308.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEin4hT8-8Mm0Hkem5DIrF-7Mm0AEDj_oG31K2WsgDTFmowxKj9HvRjRS9-ioI1hPxTNIzAvbgZJk6TvDZpgqbelFT-zn501gfNUbk3KnHGnkEAstllrcMZl3CYRDu_usVIghQsbHmgY5a_Z/s640/blogger-image--727977308.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-50473235068411559302012-02-28T11:01:00.001-08:002012-02-28T11:01:11.275-08:00Lasix is back!<br />
Over these last few days Xander has been having a few struggles. With cardi taking him off of his lasix and oxygen we started noticing that he was coughing more, throwing up, breathing faster, he was just do uncomfortable that he did not even want to lay down or even sleep. <br />
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Last night came the overwhelming feeling that we would be taking up residency at the big house on the hill . I was NOT about to have that happen so with that overwhelming feeling came the mom instinct loud and clear, I has to give him his lasix, he needed that. Everything that was happening made me know that it was fluid he was retaining.<br />
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3-4 hours later after taking it he was able to calm and relax enough to fall asleep and not cough. <br />
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His pedi brought us in immediately this morning once going over everything and sure enough Xander was retaining fluids and fast. Gaining 1 pound 14 oz in 4 days would be great news if it weren't all fluid. <br />
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His oxygen level due to all of this has gone from 84 to 72. Needless to say Xander will be getting his lasix for a while and next time we aren't going off of it cold turkey but will wean instead! <br />
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Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-49411356273152372572012-02-16T13:06:00.001-08:002012-02-16T13:06:49.729-08:00O how things can change in just 1 year.Can I just say "What was I thinking" 7:30 am cardi appointment meaning 5:30 wake up time and out the door by 6:30 to get there on time. Well I was thinking of all the icky germs that we would be walking into, so being first see sounded awesome to me lol.<br />
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First I have to RAVE about the NEW riverton hospital and the primary's children area they have there, totally amazing, instead of it taking usually 2-3 hours up at the big house on the hill it was only 1 hour (thank you god) AND It truly felt like WE were the only ones there!!! LOVE IT!!<br />
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Xander's 5 month check up went AWESOME. Of course Xander forgot to check his grumpiness at the door but we made it through it. He would be fine and all happy UNTIL someone came at him with a medical equipment ( really can you blame the poor kid lol) but with the attitude he was giving we got what we needed to and that's all that mattered. <br />
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Dr P & Dr Miller are thrilled at how well he is doing, they love that he is actually gaining the weight with out being tube fed. His X-ray showed that all is great and they took him off his lasix med ( YAY 1 less med to have to give each day!) His EKG and ECHO showed that his valve leaks but nothing to even worry about as its such a little amount. <br />
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We were told that Xander can now be off oxygen completely but to still monitor his sats. and give back when needed and we don't go back for another 6 months woohoo!!<br />
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Today was a GREAT clinic day and it's such a major change from 1 year ago this month, it's truly AMAZING to see how far he has come and what he has overcame! Never underestimate what your little ones can do!!<br />
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<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL_E5urNij2mo36W-eKd31ukj7yPDI8OCTu6weUaDwCzcIsNkXN-lvCcHOEZDQ6OwPVgIGHe5g2wDMAOISLXyhO9ouXMFyuhBReDD8s7iDF_TzSJCO-r1Q0Fm1nHdtHQsSrnjX2k1FVv7_/s640/blogger-image-738202058.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhL_E5urNij2mo36W-eKd31ukj7yPDI8OCTu6weUaDwCzcIsNkXN-lvCcHOEZDQ6OwPVgIGHe5g2wDMAOISLXyhO9ouXMFyuhBReDD8s7iDF_TzSJCO-r1Q0Fm1nHdtHQsSrnjX2k1FVv7_/s640/blogger-image-738202058.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_xxhvIfrVuj4Ryl1JE-gGRh9OsGk4wBk12rkyz08PzQnsxyK5gpPtbDBkH1-_e2Mnpttlq0AhQogKeX-rgKJ3QLtB_F7UfYN-0D-A7APhwfYc6f8R7dYNYmeKrFm4t-BVBvmzmhTxVILy/s640/blogger-image-948892978.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_xxhvIfrVuj4Ryl1JE-gGRh9OsGk4wBk12rkyz08PzQnsxyK5gpPtbDBkH1-_e2Mnpttlq0AhQogKeX-rgKJ3QLtB_F7UfYN-0D-A7APhwfYc6f8R7dYNYmeKrFm4t-BVBvmzmhTxVILy/s640/blogger-image-948892978.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi06azZoWToSafEGnA8qEDqANTzh80Oo9GQSL1zM7CRcKst_htDk-XiBTZa9Q2ouga3gVr2Nl2l19ovs60RlNwwp6aXu33F62IxoadedHZOlHYtju6dqaifwwOJlasZMTQKu7bMT9_OsltR/s640/blogger-image-1552898513.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi06azZoWToSafEGnA8qEDqANTzh80Oo9GQSL1zM7CRcKst_htDk-XiBTZa9Q2ouga3gVr2Nl2l19ovs60RlNwwp6aXu33F62IxoadedHZOlHYtju6dqaifwwOJlasZMTQKu7bMT9_OsltR/s640/blogger-image-1552898513.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com1tag:blogger.com,1999:blog-5263364215677617349.post-90062260874470106112012-02-02T23:04:00.001-08:002012-02-02T23:04:13.056-08:00Happy 1st birthday Xander"In a matter of minutes your life can change forever. To never go back to where it once was and quickly thrust down an unknown path. Your life as you once knew it comes to a screeching halt as the rest of the world carries on around you. Hospitals become your new home, clinic visits your new vacation destination, nurses and doctors your new family. Tube feedings, administering medications, pulse oximeters, things that most would find terrifying soon become a way of life for you."<br />
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I couldn't have said the above statement made by another heart mom better myself!<br />
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16 hours after Xander was born that above statement became true 1 year ago today. <br />
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The nurses huddled around my baby, life flight taking him away, arriving at PCMC to find out what's going on, being brought into a consultation room, delicately given the news, hearing the Charlie brown teachers voice after they said heart, crying with my husband uncontrollably, seeing my father in law cry (first time) will forever be imprinted into my memory.<br />
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Your body tends to shut down and you then start walking in a fog, focusing only on that one area of life for a period of time. You gather all of this strength you NEVER knew you had and it stays with you forever. You look at life in a WHOLE different light and continue to as the days go by. We may have not been as prepared as some heart parents were before giving birth, but we definitely became just as strong as they did.<br />
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Xander has touched so many lives and has put so many smiles on so many faces during his 1st year here with us that he will forever be apart of them in some way or another. <br />
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We have witnessed a HUGE miracle and that miracle crawls around all over our home, getting into cabinets, pulling out all the Tupperware, lids to pots and pans, playing in the dogs water, and shutting himself into the bathroom. <br />
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He may have to rest to catch more energy but this now 1 year old will not let it hold him back. He has learned how to eat on his own, feed himself on his own, crawl on his own, & now learning that he can stand on his own. He has blown both of his doctors away on his ability of moving forward.<br />
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He may not be the fat baby Nick and I are so used to having, now weighing in at 15 pounds 1.2oz and 27 inches long as of today, but we already know he does things in his own timing. <br />
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Our first year with him has been a definite up hill battle but I would not change or give back the lessons we have learned, the new family we have become or the heart buddies and families we have met along our journey for anything. <br />
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I am proud to have the title of "Heart Mom" and I am proud that my heart warrior chose us as his family!<br />
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Happy 1st birthday Xander you're truly our hero!<br />
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text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaSeiNOwBmEWFQlE-9D-ycywDp25g-n4l6ZCE0n3Zzg0EruUnIUwwKx5OK6CWf2aXRtzJedTtjpCZEktW0iFUcwcQ8yd9EphtJCjzjtGXxFcs7GGL3zrbgfEpQz-rPLu_Jm3Yi20DG2Khm/s640/blogger-image--1299648728.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaSeiNOwBmEWFQlE-9D-ycywDp25g-n4l6ZCE0n3Zzg0EruUnIUwwKx5OK6CWf2aXRtzJedTtjpCZEktW0iFUcwcQ8yd9EphtJCjzjtGXxFcs7GGL3zrbgfEpQz-rPLu_Jm3Yi20DG2Khm/s640/blogger-image--1299648728.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdilyt6L5PMcJOHTp5MKmA3bWKDzlrs2TKAckmrRmWsH26PED1E93kTlMxMLkXmFrgaET5CiY09o8am5gSR_j_eGG6LGmsoN_9iKEkSiTThyphenhyphenZn3TMuS4lvAR117QtVVoMlRW38aH2zmbFx/s640/blogger-image--2049494027.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdilyt6L5PMcJOHTp5MKmA3bWKDzlrs2TKAckmrRmWsH26PED1E93kTlMxMLkXmFrgaET5CiY09o8am5gSR_j_eGG6LGmsoN_9iKEkSiTThyphenhyphenZn3TMuS4lvAR117QtVVoMlRW38aH2zmbFx/s640/blogger-image--2049494027.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-35885092769240958082012-01-20T20:05:00.000-08:002012-01-20T20:29:50.863-08:00Looking back<span style="font-style: italic;"><span style="font-weight: bold;">We always try to find the answer on why things happen or why did I not see this when things happen to us. I myself have been thinking this to myself for the last year but recently it has been even more so.<br /><br />While gathering pictures of Xander to be put into a project my dear cousin is helping me on I came across the pictures of the day he was born and in those pictures right there i should have followed my gut instinct and spoke up. Xander in these pictures looks so purple and blue and seeing them having to use an oxygen bag on him just to get him to breathe right should have been an even bigger clue there was something not right, but i really just let it slide thinking that maybe this is what a full term baby looks like ( have never had actual full term babies before). Just going over these pictures seriously put me in a funk and the blame game started all over again.<br /><br />As I continued to do this it finally (yet again) hit me that there was no way i could have prevented anything if i had actually said something was wrong, what was about to be was always going to be what it was there is no way i could ever change that. He came to us with half a heart for a reason. He loved god so much that he just could not leave him fully so he left half of his heart with him and came to us as a special blessing.<br /><br />Xander is an amazing child to say the least and with every trial that has come his way he has proven that nothing will hold him back ( he gets that from his daddy i say) his little body can only handle so much but man when that boy is determined to get that toy at the other end of the living room he will force all of the energy with in him to make it to it with out having to stop and rest.<br /><br />We were told that he may not be here long but really do any of us know how long we will be here? The only one that can determine our time length is the one who sent us here.<br /><br /><br /></span></span>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-42269346301971515072012-01-08T18:12:00.001-08:002012-01-08T18:14:43.403-08:00Update in the new year!Well it's 2012, wow how 2011 flew by. I'm sure it's because during the majority of it I was in a walking fog, but 2011 definitely taught me many things about myself especially but also about my family!<br />
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I'm noticing as the weeks get closer to Xander's birthday my emotions are high. Just visiting the OBGYN and seeing all of these beautiful pregnant woman brings you back to where it was that happy period, you know the last few weeks of being pregnant counting down those days til you no longer have to share what little space you now have in your body and knowing your healthy baby will be in your arms soon.<br />
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Now you look at every pregnant woman wondering to yourself, "do they know there could be something wrong even though they have been told everything looks great"? Yep I have those thoughts and it's pretty normal to have them as well. <br />
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On a Xander update: he is crawling and exploring ALL over the house!!! It takes a lot out of him but he will rest in between each crawl until he gets to where he wants or what he's going after! <br />
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He will officially be off tube feeding for a month on the 14th!! I was SOOO excited to send that dang food pump back!! <br />
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Now if only I could get the oxygen stuff to go away, but that will come with time! <br />
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<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0NhrJbgaNoO6PKxp1U89kRhXkc8LNRNVlcITiIdt9RZnLm9r8h-4kUaRfYMZr4pbxHAlSHIu45BBwKoNtktfUzkSFvjLTz4bsA1q45tJrES81Jk4yMWxHdZL0UsVadjOlY0jMzw1qf49a/s640/blogger-image--368331730.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg0NhrJbgaNoO6PKxp1U89kRhXkc8LNRNVlcITiIdt9RZnLm9r8h-4kUaRfYMZr4pbxHAlSHIu45BBwKoNtktfUzkSFvjLTz4bsA1q45tJrES81Jk4yMWxHdZL0UsVadjOlY0jMzw1qf49a/s640/blogger-image--368331730.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyswTazeSU3oD2y_ohv771xxXqukKVvDimWDEzol4r_fZna8SoKLDJFkmbjx_zdTCZeFgR_TkxLLMlxSBl2x-5eLnGF96nav9iEKuQBvnPkSZKjfiBm-jOBKeMwVdxU6riziUvG3HI8YC/s640/blogger-image--2120029096.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiDyswTazeSU3oD2y_ohv771xxXqukKVvDimWDEzol4r_fZna8SoKLDJFkmbjx_zdTCZeFgR_TkxLLMlxSBl2x-5eLnGF96nav9iEKuQBvnPkSZKjfiBm-jOBKeMwVdxU6riziUvG3HI8YC/s640/blogger-image--2120029096.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com2tag:blogger.com,1999:blog-5263364215677617349.post-13642036052214313562011-12-26T14:43:00.001-08:002011-12-26T14:43:23.201-08:00Christmas 2011Christmas has come and gone, but I have to admit that this Christmas was even more special than any of the years before.<br />
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Xander had his first taste of Christmas this year and he had a blast with all the commotion and all the presents, but I think he loved trying to eat the wrapping paper the most.<br />
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Christmas eve Xander got to meet his great grandma and grandpa Larson for the first time and he also got to meet his great great grandma Bly, watching them cuddle him brought tears of joy to my eyes. I'm so happy that they were able to have him near them for that night and to be able to see him as a "normal" baby and not one with tubes all over him or going inside of him as most of us have.<br />
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Xander continues to grow stronger as the days come and go and he continues to amaze us as time goes on. In just 5 more weeks we will be celebrating his 1st birthday what an amazing date to look forward to as of right now! <div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHVIOSZKoHnFs2FoYvQfziN-t8C0Af8NDoLTQdRir_3shQQeygpUZyLw7DIGSIs9iA2mFEp8G0Mvy6reLZakjsreRvQwEDiAFVcwTbo4A5N9F5TIU-bzVH32iy5KuPbT_AADU8Gopb1oTR/s640/blogger-image-954017076.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHVIOSZKoHnFs2FoYvQfziN-t8C0Af8NDoLTQdRir_3shQQeygpUZyLw7DIGSIs9iA2mFEp8G0Mvy6reLZakjsreRvQwEDiAFVcwTbo4A5N9F5TIU-bzVH32iy5KuPbT_AADU8Gopb1oTR/s640/blogger-image-954017076.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSHrs7Ci-HUGOi9WmaLU_Dn__COq5ylObmcvfPtJ1H8Q3iztykxEXl4EtYBwDXf0DqF7BIXT6jPCo35p1HaC9yBKkR8FsddE4P56w7G1ckheA2u1E059XMItbreYGf5R39PmTapVCzF8J_/s640/blogger-image-926584962.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSHrs7Ci-HUGOi9WmaLU_Dn__COq5ylObmcvfPtJ1H8Q3iztykxEXl4EtYBwDXf0DqF7BIXT6jPCo35p1HaC9yBKkR8FsddE4P56w7G1ckheA2u1E059XMItbreYGf5R39PmTapVCzF8J_/s640/blogger-image-926584962.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm49WFpIkmZAMvawB_T4iagyBy3jGArZF7hCWwCfNE_zBo8yH0P1HW-wcTxxxul4hHDkhUat5egm78xBxwNQu-t8S2eA6zYRpO4PO4HxD7M78ci4jLSIvbtbAM1ncq42OiupJ4BIDZZW2S/s640/blogger-image-540184950.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm49WFpIkmZAMvawB_T4iagyBy3jGArZF7hCWwCfNE_zBo8yH0P1HW-wcTxxxul4hHDkhUat5egm78xBxwNQu-t8S2eA6zYRpO4PO4HxD7M78ci4jLSIvbtbAM1ncq42OiupJ4BIDZZW2S/s640/blogger-image-540184950.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguTB9Ri59EJG9g5h0VJfHqDMDC0ML0vhv78TF6Jpynss4ysmJ1jdVFwO7JjeW5KCNnjkhP_F21WidAyhiVst9t-uJzS66PmTSKs49TaXG_KKs171VXPBATfvQylw7-ruzBmpeR8Q3IYmqt/s640/blogger-image--2126312246.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguTB9Ri59EJG9g5h0VJfHqDMDC0ML0vhv78TF6Jpynss4ysmJ1jdVFwO7JjeW5KCNnjkhP_F21WidAyhiVst9t-uJzS66PmTSKs49TaXG_KKs171VXPBATfvQylw7-ruzBmpeR8Q3IYmqt/s640/blogger-image--2126312246.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_LcDHV8df1yGPHJDjF4kUSvOAu-aXPkhk8jphzU6FbLYImfY_KJdR42S8h7dfVPUMvZzrJ8PzY5u_SW9cuLWOEphbVOLM4745eqqOLKCbMVo44D1uspGQmqUcq1Km6DhzU5Xc7HLKbsj/s640/blogger-image-2138323956.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjs_LcDHV8df1yGPHJDjF4kUSvOAu-aXPkhk8jphzU6FbLYImfY_KJdR42S8h7dfVPUMvZzrJ8PzY5u_SW9cuLWOEphbVOLM4745eqqOLKCbMVo44D1uspGQmqUcq1Km6DhzU5Xc7HLKbsj/s640/blogger-image-2138323956.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIr9t0OyPypF8TUT3CooI8SoovtNip5pdo3rl_n8DXn4qtr0b0g_yrdHpAEsSkeSBzUzTnDV6AbXc4tomMHAqOqD-JQaKjk1sySk3W4PLCBWzMieLnqSKlijGAy6vRBzwlhyphenhyphenRvpoAMuXT_/s640/blogger-image--1147747414.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIr9t0OyPypF8TUT3CooI8SoovtNip5pdo3rl_n8DXn4qtr0b0g_yrdHpAEsSkeSBzUzTnDV6AbXc4tomMHAqOqD-JQaKjk1sySk3W4PLCBWzMieLnqSKlijGAy6vRBzwlhyphenhyphenRvpoAMuXT_/s640/blogger-image--1147747414.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlPoH7Iu59eaKi8gZt-sTfCdYpnu3p4B4LVXs7PLVo-Htt8AekWGcRdpmkdHqwhoSgZq2zb4LapaH6u37lwLsptOGRf76jcpEr2D7y9jy_tfi0qlYPwily7D4brlugqd5hiJXlxCCr1oaC/s640/blogger-image--1597435759.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlPoH7Iu59eaKi8gZt-sTfCdYpnu3p4B4LVXs7PLVo-Htt8AekWGcRdpmkdHqwhoSgZq2zb4LapaH6u37lwLsptOGRf76jcpEr2D7y9jy_tfi0qlYPwily7D4brlugqd5hiJXlxCCr1oaC/s640/blogger-image--1597435759.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-40187524720496742532011-12-18T16:35:00.001-08:002011-12-18T16:36:43.140-08:00Getting so big!So just a short update on Xander.<br />
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Tuesday night (12/13) he decided he was not going to keep his NG tube in what so ever it did not matter what we did he was not going to happen. <br />
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Well the next morning ( which so happened to be my birthday) I gave him a bottle and he took it like he had be drinking it forever!! <br />
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He's doing pretty awesome at having a bottle and I'm so happy that I have not had to deal with the dumb NG tube for the last 5 days!!<br />
<br />
Xander has started to do the army crawl but I caught him on all fours this afternoon which made me smile and cry. He's development has come so FAR in the last 2 months that really we were not expecting him to start being mobile until he was 1 so to see him prove them wrong again is WONDERFUL!!<br />
<br />
I want to wish everyone a VERY MERRY CHRISTMAS and remember the true meaning of Christmas!<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKopoqxitRWii8A8nXYzltnix89d6w7QVj-r0L4BssycmwMPxp5Vx3Rd7w8RL6QXUIgSHVTi195ftc8k2bbckMmC7BaTWC1FEFHd25eol3X31wF_yCSScIsYecErfTq-PM8GQ4YKrRYZ_k/s640/blogger-image--1300161896.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKopoqxitRWii8A8nXYzltnix89d6w7QVj-r0L4BssycmwMPxp5Vx3Rd7w8RL6QXUIgSHVTi195ftc8k2bbckMmC7BaTWC1FEFHd25eol3X31wF_yCSScIsYecErfTq-PM8GQ4YKrRYZ_k/s640/blogger-image--1300161896.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9QdlPUKA2BynAF-4A4XYPDCytmiM-8uhu4Pu9WaFwfFxv0lRWas_-saTaqKqndPJMfSpA6A-KgP3rBRkpjXkQZ_ilblzFk1fMsT5lA9s75nPe1M4Ss1A4Hs1Sqx9vTKnNaQi7HHi3Bkj/s640/blogger-image-2086552167.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjH9QdlPUKA2BynAF-4A4XYPDCytmiM-8uhu4Pu9WaFwfFxv0lRWas_-saTaqKqndPJMfSpA6A-KgP3rBRkpjXkQZ_ilblzFk1fMsT5lA9s75nPe1M4Ss1A4Hs1Sqx9vTKnNaQi7HHi3Bkj/s640/blogger-image-2086552167.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLFN7phZce760rvdGC1oZdCMev20unPlgTZLo6y9IU0Caw3fllTARSQBxX4P3Szgg2ok3hR0kI2qhbGwE-bYJzdPsNmxUW8tb5eXINsifZfPS8yxrfs07YDC7VT1VbBdgS2PTrekvzjMdq/s640/blogger-image--89898765.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLFN7phZce760rvdGC1oZdCMev20unPlgTZLo6y9IU0Caw3fllTARSQBxX4P3Szgg2ok3hR0kI2qhbGwE-bYJzdPsNmxUW8tb5eXINsifZfPS8yxrfs07YDC7VT1VbBdgS2PTrekvzjMdq/s640/blogger-image--89898765.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-40656329777327170192011-12-02T08:21:00.000-08:002011-12-02T09:12:36.039-08:0010 months WOW!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz5htObMehXhlNS5OtY0lG3Y9yKdNtkh2Ao-forC_yDBOScoaL8Hm8yE47v8YjSYYiaveisKfJrcdz1h0HCADgmq3hmrrqB47LVeSgDcJDXv9WoYMCEY-Qt1FiDE9SNmboXXTkf2RYzbOC/s1600/298909_2661866666895_1262812714_33335510_2036082425_n.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz5htObMehXhlNS5OtY0lG3Y9yKdNtkh2Ao-forC_yDBOScoaL8Hm8yE47v8YjSYYiaveisKfJrcdz1h0HCADgmq3hmrrqB47LVeSgDcJDXv9WoYMCEY-Qt1FiDE9SNmboXXTkf2RYzbOC/s320/298909_2661866666895_1262812714_33335510_2036082425_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5681579341080822210" border="0" /></a><br /><br /><br /><span style="font-style: italic;">WOW 10 months really?<br /><br />Have you ever just looked at one of your kids in such away that it brings tears to your eyes? I have with all of my kids but today as Xander smiled his HUGE smile he does ever morning i just got teary eyed. I just stood there looking at him and brushing his little hairs away from his eyes and just smiled with tear filled eyes. Once taking him out of of his crib a squeezed him a little bit harder than usually. and kissed him all over mak</span><span style="font-style: italic;">ing him laugh.<br /><br />Xander is 10 months today, it has been 10 months of learning, waiting, crying, and worrying, and 2nd guessing yourself as well, but really its no different than any other mothers normal worry, yea us heart moms may have more meds to give out more doctor appointments to schedule more techniques to try on getting them to gain weight or even more techniques on getting them to be healthy, but really no matter what an</span><span style="font-style: italic;">yone's situation is healthy or non all moms have their worries.</span><br /><span style="font-style: italic;"><br />I was in the store the other day getting baby stuff of course ( gotta get those pounds on him lol) as i was checking out the lady asked me how old my baby was that i was buying for a replied " he will be 10 months in 2 days" at that moment it hit me "oh my gosh Xander has over come the odds that were given to him" and immediately my eyes started to fill AGAIN (for one that hates to show emotions really, Xander definitely has turned me into the biggest WEEPER lol) The poor clerk just looked at me and asked if</span><span style="font-style: italic;"> i was ok, i stated yes just tears of joy, she asked why so i simply told her Xanders story.<br /></span><br /><span style="font-style: italic;">Of course once all was said and done the lady had tears too, but she told me that she was sorry that i had to go through all of this and that he had to as well, i stated I'm not sorry and nether should you, life is about teaching us things and loving things that we never thought was possible and showing us the strenght that is inside of us at all times but only comes out when we truly need it because we tell ourselves we are not strong, life is about treasuring the things that really matter most in life and Xander taught our little family that we can survive ALL.<br /><br />So as well know the holidays are here, thanksgiving for us th</span><span style="font-style: italic;">is year was pretty different for us but not in a bad way. We stayed home due to Xander getting sick the day before and i made my very first thanksgiving dinner all on my own it was A</span><span style="font-style: italic;">WESOME to say the least, but it was very memorable as well. It was just us for a change and in a way very peaceful, of course we missed the family, but it was just nice to sit home and celebrate with just us.<br /><br /><br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLb4IYjZvoPWxZEBbt7V0vKbGHTD3cinaJP4SP5AOuaD9ZsfRaH-11ITn1Xctgy5tx4HP2od97B0Ajt9NIB-b8YvCoTCnqDsJUynQEK2y6nUygodDzNb-4rf7ORFJCGSuaC3oHufY3mCXG/s1600/384101_2736373249513_1262812714_33373875_2107853202_n.jpg"><img style="cursor:pointer; cursor:hand;width: 400px; height: 300px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLb4IYjZvoPWxZEBbt7V0vKbGHTD3cinaJP4SP5AOuaD9ZsfRaH-11ITn1Xctgy5tx4HP2od97B0Ajt9NIB-b8YvCoTCnqDsJUynQEK2y6nUygodDzNb-4rf7ORFJCGSuaC3oHufY3mCXG/s400/384101_2736373249513_1262812714_33373875_2107853202_n.jpg" alt="" id="BLOGGER_PHOTO_ID_5681576347793110914" border="0" /></a><br /><br /><span style="font-style: italic;">Now Christmas is right around the corner and i can not wait to see what this little man does with all of the presents around the tree. He already likes to get under the tree and play with the little ornaments that are close enough for him to </span><span style="font-style: italic;">touch lol.</span><br /><br /><span style="font-style: italic;"><span style="font-style: italic;"><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbcYa4Tl_KOrNUCTpl44N3rYD7_pfqv6QEwxnCa2PUTcq5RWHdGIsXLmCqgYG8glKMiDf3aQwbI03zdrbMLIimYxuq0S4Tid1ZXkh8zVR8qqlivl_gaP5x2PgbdEsHyRyHOEiHjjAKUr1v/s1600/391804_2752685937320_1262812714_33382749_64673421_a.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 180px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbcYa4Tl_KOrNUCTpl44N3rYD7_pfqv6QEwxnCa2PUTcq5RWHdGIsXLmCqgYG8glKMiDf3aQwbI03zdrbMLIimYxuq0S4Tid1ZXkh8zVR8qqlivl_gaP5x2PgbdEsHyRyHOEiHjjAKUr1v/s320/391804_2752685937320_1262812714_33382749_64673421_a.jpg" alt="" id="BLOGGER_PHOTO_ID_5681578111509491922" border="0" /></a></span></span><span style="font-style: italic;">This holiday season is different for me in so many ways. We have living proof that true miracles really do happen and i have 1 very inspirational miracle that i get to hold each day along with 4 others that amaze me more and more as the days come and go!</span><br /><span style="font-style: italic;"><br /></span>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-61970657404045392462011-10-31T09:45:00.001-07:002011-10-31T10:02:17.215-07:00Our adventure!Happy Halloween!! I love this holiday, seeing all the cute little witches, vampires, and ghosts walking around. This is Xanders 1st Halloween, but will be inside tonight helping mommy hand out the candy to all the goblins and staying warm! <br />
<br />
We've had some big adventures these last few days. Last week on Thursday Xanders NG tube was bugging him tremendously, I decided that I was not going to retape the tube down if it started to come up. As the day went on he kept pulling at the tape and was making that tube come out more and more to where it was starting to bug me, so finally I had enough of it and pulled the tube out, knowing that Xander would ether need to start taking that bottle or I would have to put it back in. Ether way I was willing to do whatever I had to.<br />
<br />
Xander took 2oz of his bottle that night before bed and had half of his pear baby food. <br />
<br />
Friday he woke up and wanted nothing to do with the bottle (frustration for me) he would how ever eat baby food so I stuck with that. Aunty Libby came with rice cereal, baby crackers and baby puffs ( she's pretty excited about all of this like nick & I) Xander LOVES the rice cereal. <br />
<br />
Xander that day still wanted nothing to do with the bottle and I knew that he HAD to have is formula in order to get all of the calories he needs and to stay hydrated. <br />
<br />
Friday night he took another 2oz before bed, still not enough of what he needs. Saturday we all packed up and headed to dylans football game. <br />
<br />
Our cute 13 year old neighbor also babysitter snatched Xander up as soon as she arrived. She and Xander have a special connection and he smiles so much when she is around. She took his bottle and wouldn't you know it the little booger ate all 4oz's of his bottle for her!! <br />
<br />
As the day went on Xander would have some bottle but not big amounts. We decided to get him some pedialite just to keep him hydrated. Of course he loves that and ate that without a fuss. Obviously he has a sweet tooth! <br />
<br />
During the night Saturday he finally became so hunger that he ate 8oz's of his formula ( thank you god), but of course the next day all he would want is his baby food. <br />
<br />
I have to admit that it's very frustrating knowing that he HAS to have his formula to help with the HIGH calorie diet he is on but will not always take it, but it's a learning process and I will stick to it until he gets it. <br />
<br />
I think for now Xander will be tubeless during the day and I will place his NG tube in each night just to help make up for calories he lacks through out the day! <div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6xLFTySiYtXLeFLYRp9HcRohFxqCcm_rLrglOrgzVZ64nUzdP57T97ukwZgsTGb6kUUArP4E9Ptzf50bKGkpr8RwriXTODm3_yQ1hk7K_ZlMlq3qhh1uWxLAWlKoUtYN77OJ4CN9YvC97/s640/blogger-image-2093611153.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh6xLFTySiYtXLeFLYRp9HcRohFxqCcm_rLrglOrgzVZ64nUzdP57T97ukwZgsTGb6kUUArP4E9Ptzf50bKGkpr8RwriXTODm3_yQ1hk7K_ZlMlq3qhh1uWxLAWlKoUtYN77OJ4CN9YvC97/s640/blogger-image-2093611153.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimFd81f4nhEmLi8BmWA-S-dXqb7wRoEeeLV701XMPUhA64jtDZu30AChVri-gUGp8NMu7drtJpSBsrvPHEwfQRCKUdp9gMFblAzJCt8o7SgQXi6thz9X5O1RvX4-Wi4CvfrNzJjyngnUZX/s640/blogger-image-1792109292.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEimFd81f4nhEmLi8BmWA-S-dXqb7wRoEeeLV701XMPUhA64jtDZu30AChVri-gUGp8NMu7drtJpSBsrvPHEwfQRCKUdp9gMFblAzJCt8o7SgQXi6thz9X5O1RvX4-Wi4CvfrNzJjyngnUZX/s640/blogger-image-1792109292.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKyQBZzbKaqphtqu2jT6ug5MIQBkMhabBJj9NNo4BziNllMwoPkTS76tZC_swCxGTXMrchIm7aWVETKwHAmG6Cef0wH6Z93OH-4MFHuNpYo1xbfiinukEgukLWlluVX5JOLGNGWXdF4zH4/s640/blogger-image-855484081.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgKyQBZzbKaqphtqu2jT6ug5MIQBkMhabBJj9NNo4BziNllMwoPkTS76tZC_swCxGTXMrchIm7aWVETKwHAmG6Cef0wH6Z93OH-4MFHuNpYo1xbfiinukEgukLWlluVX5JOLGNGWXdF4zH4/s640/blogger-image-855484081.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYzFnYzaYnt9zDgRE4-ZZykP2bti6abcfRf5MmmVdCWwnJPWyMDKh3H-S_OmI1WdEzQj2q5WbkJuunUoHcLSfDxPZjSXZglXqrZubS8pGe9jB9ydfoYAj00chWgP9gkIHUl25hRwOywiwk/s640/blogger-image--1167252064.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYzFnYzaYnt9zDgRE4-ZZykP2bti6abcfRf5MmmVdCWwnJPWyMDKh3H-S_OmI1WdEzQj2q5WbkJuunUoHcLSfDxPZjSXZglXqrZubS8pGe9jB9ydfoYAj00chWgP9gkIHUl25hRwOywiwk/s640/blogger-image--1167252064.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com1tag:blogger.com,1999:blog-5263364215677617349.post-61367495625331565942011-10-17T21:22:00.001-07:002011-10-17T21:43:48.258-07:00O how the year has flown!It's so crazy on how fast 2011 has gone, it really feels like just yesterday it was February and here we are now in October 14 days away from Halloween.<br />
<br />
Sooo not ready for the winter and the sicknesses that we will be avoiding. I wish there was a fast forward button at times and I would only use it during the cold months where it seems everyone is ALWAYS getting sick!<br />
<br />
Well Xander as of October 2nd is now 8 months and is still weighing in at 11 pounds 14 oz. I think he may have a complex on gaining weight lol. He is doing so great after his Glenn and you can really tell the difference in him too!<br />
<br />
We have been working with a therapist that comes in twice a month and helps with his mobility and feeding. Xander has shown no interest in a bottle what so ever so we have passed that and have gone straight to a tippy cup which he loves.. Our goal as of right now is to have his NG tube out by thanksgiving!!!<br />
<br />
He has cut two teeth in the last week making him super cranky and has decided that sleep is not necessary at night ( huh maybe not for him but sure is for me lol) so now we get to experiment with essential oils to help calm him more at night and relax Jim just a bit more ( hmmm can't imagine on why he may be tense lol).<br />
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Holidays are coming up and things will be really different with them and what we are used to but it's all for a good reason. We must make sacrifices when others feel they do not.<br />
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Xander will not need to go back to his cardi doc until he is 1, so in other words PCMC we love you dearly but we better not see you until February!!<br />
<br />
<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBGHlMtzQiO7GqIgN8NvFp5udkPQpHDGNb3HEYrWyZs67jzgmGiAKRsLruhBWeTWHrSNYruAY-LVhrnzFICtC8ebmyIldGfQ4whsTPigbpTyT0MYCkKsAaDuWsiaFm4qg51SWfuLPhaZgl/s640/blogger-image-1990173011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBGHlMtzQiO7GqIgN8NvFp5udkPQpHDGNb3HEYrWyZs67jzgmGiAKRsLruhBWeTWHrSNYruAY-LVhrnzFICtC8ebmyIldGfQ4whsTPigbpTyT0MYCkKsAaDuWsiaFm4qg51SWfuLPhaZgl/s640/blogger-image-1990173011.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJOi-B6mKxCosJWszA-PMLbqqonzL_G8gjINgp10USYd6tTalkeh_u0a0EeRCYv3wvljKXEEq0663pl1GZC-smjyVIZmW-PmQJQpi2YnSord6jy2ceNxPm-1lmKVPYNig7AuXytLLL3UeJ/s640/blogger-image-195583703.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhJOi-B6mKxCosJWszA-PMLbqqonzL_G8gjINgp10USYd6tTalkeh_u0a0EeRCYv3wvljKXEEq0663pl1GZC-smjyVIZmW-PmQJQpi2YnSord6jy2ceNxPm-1lmKVPYNig7AuXytLLL3UeJ/s640/blogger-image-195583703.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEE3QDzKXHPVKJT7iWZy99fXM4PTuh68vLOMxBt6FWb-EydDaFEyuoG8lWMCKkWTOjlyvmC1v7jNjCfRey_NhY2Y7gK45dhsb0B5NRGnj2F6rdsh1Szm4a1SctETVBjsst4ynV174tVy_E/s640/blogger-image--623232384.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjEE3QDzKXHPVKJT7iWZy99fXM4PTuh68vLOMxBt6FWb-EydDaFEyuoG8lWMCKkWTOjlyvmC1v7jNjCfRey_NhY2Y7gK45dhsb0B5NRGnj2F6rdsh1Szm4a1SctETVBjsst4ynV174tVy_E/s640/blogger-image--623232384.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ouTdBX6N57qx4bdQZ4r6ymwi5-Fd1hNtTtkq0cuCsyO3Hj3WNeokaWY6Pab22MzKRahIwh_JYInyQ_2Wpg3VbVDSlZDVKovDC7yFAVxAHvvW0l3MfhsokS5QN_fIEudSVsGAiygE7qL5/s640/blogger-image-623384819.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ouTdBX6N57qx4bdQZ4r6ymwi5-Fd1hNtTtkq0cuCsyO3Hj3WNeokaWY6Pab22MzKRahIwh_JYInyQ_2Wpg3VbVDSlZDVKovDC7yFAVxAHvvW0l3MfhsokS5QN_fIEudSVsGAiygE7qL5/s640/blogger-image-623384819.jpg" /></a></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-22913891983891879222011-09-14T11:53:00.000-07:002011-09-14T11:54:02.388-07:00A SHOT IN THE ARM FOR XANDER!<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMw1d5YH2y-jDchM_SdQh3JlqmqDQA5lq7IW-zTDz4KE0bq1CMW5Ec0odrQQlWxyLahKU8513_r-b5g30fxbNk6wYBvavyYDG-uzkHxMA9-Og4o7dlQYFHC3uwad3bO593DaAYa4FuuIDy/s1600/Xander+144.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiMw1d5YH2y-jDchM_SdQh3JlqmqDQA5lq7IW-zTDz4KE0bq1CMW5Ec0odrQQlWxyLahKU8513_r-b5g30fxbNk6wYBvavyYDG-uzkHxMA9-Og4o7dlQYFHC3uwad3bO593DaAYa4FuuIDy/s320/Xander+144.jpg" width="240" /></a></div>
I stole this from one of our heart buddies blog and its exactly what we want to say and feel! Thank You Mollie for reading my mind!<br />
<br />
Well
the flu season is among us....BOO!!! While some of you might find this
"overboard" or "harsh" to us it is not. To us I would explain it maybe
as harsh reality. For Xander's safety we are advising that if you plan on
being around him AT ALL that you will get your flu shot. There is the
assumption that if you get the flu shot you will get the flu, well guess
what that is false. This is straight off of the CDC's website:
<br />
<br />
The
flu shot: The viruses in the flu shot are killed (inactivated), so you
cannot get the flu from a flu shot. Some minor side effects that could
occur are:<br /><br />•Soreness, redness, or swelling where the shot was given<br />•Fever (low grade)<br />•Aches<br />•Nausea<br />If
these problems occur, they begin soon after the shot and usually last 1
to 2 days. Almost all people who receive influenza vaccine have no
serious problems from it. <br />
<br />
<div align="center">
The flu would be<span style="font-size: 130%;"> <em>life threatening</em></span> to Xander, and it wouldn't be a question of "he might be admitted" to the hospital if he got it, it is a<span style="font-size: 130%;"> <em>guarantee</em></span> that he would be admitted and it would be to the ICU, I don't think<em><span style="font-size: 130%;"><strong> </strong>YOU</span></em> would want to be the cause of that, would you? </div>
<br />
<div align="center">
Because
of the risks if you don't have your flu shot you won't be allowed at
our house this winter that may seem rude but I'd rather seem rude and
avoid the hospital this winter than hold my feelings in and be at the
hospital away from KayLynn, Dylan, Trever, Anthani and Nick for weeks because Xander caught the flu.
Also if we do decide to attend family events such as Thanksgiving,
Christmas Eve, Christmas, or New Years Eve parties outside of our house
and we bring Xander, if you plan on holding him or getting close to him
we<em> will</em> be asking if you got your flu shot and if you didn't
you will just have to wait until the summer to cuddle with him. The more
people who get the flu shot the less people who get the flu, crazy
concept right? So really it isn't only for Xander's protection but for
your own family's also. I know a lot of you have kids and babies in your
homes so do it for them also! So come on all the cool kids are doing it
and get a </div>
<br />
<div align="center">
<strong><em><span style="font-size: 130%;">SHOT IN THE ARM FOR Xander!! ♥</span></em></strong></div>
Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-81204267241200647622011-08-10T16:21:00.000-07:002011-08-10T16:47:47.538-07:00Best anniversary present EVER!!!<span style="font-style: italic;">So I just have to say that today has been the most AMAZING day ever..
<br />
<br />Xander had his post-op visit up at PCMC this morning and it also is mine and Nicks 10 year anniversary! We arrived at PCMC at 10:30am and started the visit out with a chest x-ray. we then headed over to cardiology to check in. Once in the room they had us turn off his oxygen to test how he would do on holding his oxygen up. Unfortunately Xander can only keep his sats in the 78-80 area which really they would like him to be at least 80-85 if not 90 area, so we will be staying on .25 oxygen for a bit longer but hey we have SOOOOOO come accustom to it that really we don't even notice it anymore. His EKG came back wonderfully and his chest x-ray showed no fluid anywhere YAY!!!!! Of course there is always that chance that some could come at a later time but we know the signs to watch for and know what to do if we feel things are going down that route. Needless to say Xander passed his post-op visit with flying colors besides weight gain. We are still sitting at 10 pounds 3.7 oz he has not gained anything since he had left the hospital.
<br />
<br />Next we went to have our swallow test. You know how you just get that feeling in your tummy that you know they are going to or are not going to pass? Well I had that feeling today but that he would pass this time around and Drum roll please..................... he PASSED!!!!! Yep that is right our Mr. X totally passed his swallow test YAY... Now instead of having an NJ tube he now has a NG tube ( instead of going directly into the intestines it is now going in to his stomach FINALLY) I seriously can not think of a better anniversary present than that!!!
<br />
<br />So for the next 24 hours we will be keeping his feeds at 27 calories at 27 ml and hour if after the 24 hours he has been able to tolerate it we will be moving to 27 calories at 54ml every 2 hours. Once at that dose for 48 hours we will then move to 27 calories at 90ml every 3 hours and watch him for another 24 hours to make sure all is good. If we can get to this amount and have no problems we are then able to start giving him food yes FOOD ( I am so excited about this ) by mouth.. HECK YEA!!!!
<br />
<br />I cant even begin to tell you how ecstatic we are right now about this visit and everything, we definitely have such a fighter on our hands and we have been so blessed this far on everything he has gone through and will continue to have to go through but it just shows that no matter what he will fight to no end!!!
<br />
<br />Now that surgery is over and we are all good life will possibly get back to normal in the normal way of what we have become accustom to YAY!!! Xander will be having his next visit on September 19th. Early learning will now be coming in each month possible each week to start working with Xander on his speech, occupational, and physical therapy so that we can get him where he should be at for his age.
<br />
<br />Having a special need child is extremely rewarding and is very challenging at times but is these rewarding milestones that makes all the difference in the world and helps you know that what you are doing is working for your child. But really there is so much more to come and we all say BRING IT!!!
<br /></span>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-22266545920344735542011-07-28T14:08:00.000-07:002011-07-28T14:37:37.458-07:00Home sweet Home!!<em><span id="SPELLING_ERROR_0" class="blsp-spelling-error">Xander</span> made his way back home to us on Tuesday July 26<span id="SPELLING_ERROR_1" class="blsp-spelling-error">th</span>. That Tuesday marked the one week after surgery. I am still amazed at how we were able to bring him home just one week after all of that. Can you even imagine that being you? Think about it really, if that were an adult most of us would probably just <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">Ly</span> there and beg to not be touched, but when it comes to a baby, child, or teenager they seriously show all of us adults up in the recovery department. Just goes to show that these little ones mean <span id="SPELLING_ERROR_3" class="blsp-spelling-corrected">business</span>..</em><br /><em></em><br /><em><span id="SPELLING_ERROR_4" class="blsp-spelling-error">Xander</span> came home on .25 of oxygen and his NJ tube (<span id="SPELLING_ERROR_5" class="blsp-spelling-error">yay</span> for not bringing any other tubing home <span id="SPELLING_ERROR_6" class="blsp-spelling-error">lol</span>). I have to admit that the first 2 nights home were pretty rough. <span id="SPELLING_ERROR_7" class="blsp-spelling-error">Xander</span> has to get used to all of the new blood flow going from head to heart and is still healing from the chest and tubes incisions, so he has been a bot of a pill, but now things have started to level out and he is becoming <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">himself</span> again.</em><br /><em></em><br /><em>We have our post op visit on August 10<span id="SPELLING_ERROR_9" class="blsp-spelling-error">th</span> which also <span id="SPELLING_ERROR_10" class="blsp-spelling-corrected">happens</span> to be nick and <span id="SPELLING_ERROR_11" class="blsp-spelling-error">I's</span> 10 year <span id="SPELLING_ERROR_12" class="blsp-spelling-error">anni</span>. Would want to spend the day any other way to be honest. <span id="SPELLING_ERROR_13" class="blsp-spelling-error">Xander</span> will also be having another swallow test done on that day. We really need to start working hard on this now that we have a 3-5 year gap before the next surgery so that he can at least get away from the tube. We were told that we would not be able to do a G-tube like most kids are able to do, due to some underlining reasons that have happened in the 5 months he has been here. It could cause some serious problems for him.</em><br /><em></em><br /><em>Early intervention will now be coming to our home each month to work with <span id="SPELLING_ERROR_14" class="blsp-spelling-error">Xander</span> and help get him caught up developmentally. I'm thinking it wont take long to be honest but you never know with Mr. X since he has his own hidden agenda <span id="SPELLING_ERROR_15" class="blsp-spelling-error">lol</span>. </em><br /><em></em><br /><em>So <span id="SPELLING_ERROR_16" class="blsp-spelling-corrected">Far</span> now we are <span id="SPELLING_ERROR_17" class="blsp-spelling-corrected">getting</span> ready for the upcoming school year, <span id="SPELLING_ERROR_18" class="blsp-spelling-corrected">football</span> practices and dance run around. It <span id="SPELLING_ERROR_19" class="blsp-spelling-corrected">definitely</span> going to be a great Fall in the Waters house hold.</em><br /><em></em><br /><em></em><br /><em></em><br /><em></em>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-62475577563609766662011-07-25T12:03:00.000-07:002011-07-25T15:03:53.651-07:00over the past few days<div><br /><div><br /><div><em>Well it has been some great days up here at the PCMC.. </em></div><br /><br /><br /><br /><br /><br /><br /><div><em></em></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1DuzrHC_H8BT7OKGZQ7xV6wy2MIgvZ5haLAdwJHp3bo6YvdME17bZONimlyOd1B8socGVbdNaHeuaT0i02XaLj9QhryO5db3IIEyEHI62hCTjoUxbOfcv_Xb55LeCj4ib72gIw7kNdrGp/s1600/251719_2289365834607_1262812714_32923758_2762596_n.jpg"><img style="WIDTH: 150px; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5633406872919481234" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1DuzrHC_H8BT7OKGZQ7xV6wy2MIgvZ5haLAdwJHp3bo6YvdME17bZONimlyOd1B8socGVbdNaHeuaT0i02XaLj9QhryO5db3IIEyEHI62hCTjoUxbOfcv_Xb55LeCj4ib72gIw7kNdrGp/s200/251719_2289365834607_1262812714_32923758_2762596_n.jpg" /></a><br /><br /><br /><br /><br /><br /><br /><div><em>Xander graduated from the CICU on saturday afternoon and went on up to the CSU on the 3rd floor. You have NO IDEA how it felt to see our little one move from the CICU in just 4 days after spending 3.5 weeks in the CICU the first time around..</em></div><br /><br /><br /><br /><br /><div><em></em></div><br /><br /><br /><br /><br /><div><em>It truly amazes me on how strong these babies/kids are. </em></div><br /><br /><br /><br /><br /><div><em></em></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfmyqgktgr7q-7Kkr2nICOvA63mmboL0GixSaWCxiwd3pdTuzlVL1CdunfJa7UEN93c1R8V66JSf2rhBZG9NaRORvtCzosZPEN-M1VlyP5hlW56JWEQ5e3kTry7ZDfWwFnDYxlYI-IL_kN/s1600/228812_2286841171492_1262812714_32919444_7331631_n.jpg"><img style="WIDTH: 150px; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5633410505185856194" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjfmyqgktgr7q-7Kkr2nICOvA63mmboL0GixSaWCxiwd3pdTuzlVL1CdunfJa7UEN93c1R8V66JSf2rhBZG9NaRORvtCzosZPEN-M1VlyP5hlW56JWEQ5e3kTry7ZDfWwFnDYxlYI-IL_kN/s200/228812_2286841171492_1262812714_32919444_7331631_n.jpg" /></a><br /><br /><br /><br /><br /><div><em>Xander is off of all of his meds (besides his normal everyday ones), all chest tubes are gone, his incision looks great and o my word he has more color to him and not just pale and blue..</em></div><br /><br /><br /><div><em></em></div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvxc8cmZlAPomnTjEFN8yn4fioLKjTlLk_oUQ31xcHvAygzJNzWK0ZuhMgGtBSkhripDcxOAKjZ5SV59aiOoDG16DTBG8S9EWopLFsADFVBTh5ySlCcpQ_FYWXCW_-9biSn8orqordSTVf/s1600/Sharrell%2527s+IPhone.jpg"><img style="WIDTH: 150px; HEIGHT: 200px; CURSOR: hand" id="BLOGGER_PHOTO_ID_5633413412482447490" border="0" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjvxc8cmZlAPomnTjEFN8yn4fioLKjTlLk_oUQ31xcHvAygzJNzWK0ZuhMgGtBSkhripDcxOAKjZ5SV59aiOoDG16DTBG8S9EWopLFsADFVBTh5ySlCcpQ_FYWXCW_-9biSn8orqordSTVf/s200/Sharrell%2527s+IPhone.jpg" /></a><br /><br /><br /><div><em>Its been nice getting know more heart buddies and parents, to see how each child has a story that is similar to Xander's to not feel alone but to also help others cope along the way with their new journey. We definitely have found a new family to be apart of.</em></div><br /><div><em></em></div><br /><div><em></em></div><br /><div><em></em></div><br /><br /><br /><div><em></em></div><br /><br /><br /><div><em></em></div><br /><br /><br /><div></div><br /><br /><br /><br /><br /><div><em></em></div><br /><br /><br /><br /><br /><div></div><br /><br /><br /><br /><br /><div><em></em></div><br /><br /><br /><br /><br /><div><em></em></div><br /><br /><br /><br /><br /><div><em></em></div></div></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-43429242059039625912011-07-21T22:04:00.000-07:002011-07-21T22:34:20.289-07:00Glenn<em>You know it never gets easier being a heart mom or dad for that matter, but it does get more inspiring.</em><br /><em></em><br /><em><span id="SPELLING_ERROR_0" class="blsp-spelling-error">Xander</span> went in for his 2<span id="SPELLING_ERROR_1" class="blsp-spelling-error">nd</span> OHS on Tuesday July 19<span id="SPELLING_ERROR_2" class="blsp-spelling-error">th</span>. The procedure that he had done this time around is called the Glenn. In basic terms they took one of the b<span id="SPELLING_ERROR_3" class="blsp-spelling-error">lood</span> <span id="SPELLING_ERROR_4" class="blsp-spelling-corrected">supplies</span> from his head down to his PA which will allow him to get more blood supply though out his body but will give him some major pressure headaches for a few days.</em><br /><em></em><br /><em>He <span id="SPELLING_ERROR_5" class="blsp-spelling-corrected">definitely</span> looks pinker to us but he has been pretty pale for a while so its a great change to see for us..</em><br /><em></em><br /><em>However that afternoon after surgery <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Xander</span> decided he was going to be the booger that he is and not do as the doctors and nurses wanted. They tried ti <span id="SPELLING_ERROR_7" class="blsp-spelling-error">extubate</span> him and with 30 minutes or so he was re-<span id="SPELLING_ERROR_8" class="blsp-spelling-error">intubated</span>.. This is not <span id="SPELLING_ERROR_9" class="blsp-spelling-error">Xanders</span> first rodeo of doing this i promise and the docs know this as well so they backed off and decided to just let <span id="SPELLING_ERROR_10" class="blsp-spelling-error">xander</span> as he always wishes and will let him rest for 48 hours. Yep he has mommies <span id="SPELLING_ERROR_11" class="blsp-spelling-corrected">stubbornness</span> and dads go with the flow.</em><br /><em></em><br /><em>Well our 48 hours were up today and of course <span id="SPELLING_ERROR_12" class="blsp-spelling-error">Xander</span> should much improvement so they decided he was telling them he was ready and sure enough out it came and he help his oxygen, he does need some high flow still but only because his right lung had <span id="SPELLING_ERROR_13" class="blsp-spelling-corrected">collapsed</span> during the first <span id="SPELLING_ERROR_14" class="blsp-spelling-error">extubation</span> but he is quickly coming off of that too and should be on regular oxygen by morning.</em><br /><em></em><br /><em>I must say that this surgery has so far been the easiest on me as mom. I did not have the worries as i did with the first, he is not has sedated as he was with the first. he was moving around with in 48 hours and smiling and cranky ( yep loved to hear him cry). This surgery has seriously helped me see and believe that life with the Glenn is going to be totally different and a lot better.</em><br /><em></em><br /><em>We have got to meet so many heart buddies this time around. We got to meet Nicole & <span id="SPELLING_ERROR_15" class="blsp-spelling-error">Kyler</span> (<span id="SPELLING_ERROR_16" class="blsp-spelling-error">fontan</span>), Abby and Michelle ( heart transplant), Amy and Abby ( <span id="SPELLING_ERROR_17" class="blsp-spelling-error">fontan</span>), Asher ( <span id="SPELLING_ERROR_18" class="blsp-spelling-error">fontan</span>), Have not been able to meet with <span id="SPELLING_ERROR_19" class="blsp-spelling-error">Carman</span> and <span id="SPELLING_ERROR_20" class="blsp-spelling-error">Xander</span> yet but will soon. It is so nice to have others around that are going through what we are and be able to talk to them and know that they know all of the feelings and not have to feel like we are the only ones.</em><br /><em></em><br /><em></em><br /><em></em><br /><em></em><br /><em></em><br /><em></em>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-3200739208764402422011-07-12T19:28:00.000-07:002011-07-12T19:52:46.410-07:00Our heart Cath<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTfGEvXmK95QRbeUjJIJ7xMFReUMcDOzEu0f-D_kG97AR_z6hJFj1U6gKfFPTmys6Qxo9GYXPNTG0V6Fr4gjlEklbx9UUGC2lQiy6sMHjLTzZfJepLqtSZqgb0UzHWOxpKWi3soMLCRFrM/s1600/Xander+265.jpg"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5y-a9yk2kHyRj4tnkEip5nCL1on2KXBZuKcq8U9v45lr0RtByTp9lZfLIsIMmfpl72RSbvK8nZK8YI4zo7CjTNoaqSvGwTsQvtpq4jk0K0lknGyJpclEg4qvE8vVNzJBa559KZb72Kk1L/s1600/Xander+263.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5y-a9yk2kHyRj4tnkEip5nCL1on2KXBZuKcq8U9v45lr0RtByTp9lZfLIsIMmfpl72RSbvK8nZK8YI4zo7CjTNoaqSvGwTsQvtpq4jk0K0lknGyJpclEg4qvE8vVNzJBa559KZb72Kk1L/s200/Xander+263.jpg" alt="" id="BLOGGER_PHOTO_ID_5628663803634298418" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX8xUl8aTsRugss0APZQW5zbpbzyhd3vJQ3YMnazWlDkkYYX5jGw_WNoT7znCJND2o28Te5pYLutyBaD9MoT73a-haa8kOT7ZDT2Ea0ndJhHLXQdOKsgZIOZIkxh1Sgla2vLXNwNHRCPN0/s1600/Xander+261.jpg"><br /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitcr_NT8_0rvFUywPiaX4ZuD0EFG8jiTLSkTgKfP-wlC3guWPZ1wmnPH6w-RXAOCz7RbptI6-vCvFo2WT-H0PMSVk1fawoREZpHiw8D4Cj9Z7AhVHhp7RbWkEkoXFLmMGWafOXgBd9hLeQ/s1600/Xander+262.jpg"><br /></a><span style="font-style: italic;">Well Xander had his heart Cath and sedated Echo done Monday morning. Have to admit that the nerves took over my body the whole weekend and the week before but it all came out alright..<br /><br />Our day started at 5am and they took him back at 7am. We were given a pager and were told that they would page us once everything was done.<br /><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX8xUl8aTsRugss0APZQW5zbpbzyhd3vJQ3YMnazWlDkkYYX5jGw_WNoT7znCJND2o28Te5pYLutyBaD9MoT73a-haa8kOT7ZDT2Ea0ndJhHLXQdOKsgZIOZIkxh1Sgla2vLXNwNHRCPN0/s1600/Xander+261.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiX8xUl8aTsRugss0APZQW5zbpbzyhd3vJQ3YMnazWlDkkYYX5jGw_WNoT7znCJND2o28Te5pYLutyBaD9MoT73a-haa8kOT7ZDT2Ea0ndJhHLXQdOKsgZIOZIkxh1Sgla2vLXNwNHRCPN0/s200/Xander+261.jpg" alt="" id="BLOGGER_PHOTO_ID_5628659251972457330" border="0" /></a><span style="font-style: italic;">As you can see we were a little sleep deprived that day and obviously the starbucks was just not workin for one of us lol.<br /><br /><br />At 11am Xander was done and we were able to see him once more but not before sitting done and talking with the doctor. Xander had a rocky start when they got him sedated. His states dropped into the 40's and heart rate went extremely low as well so they helped him along with that. Once they got him into the 60's they decided they would get started since that was as high as he would go at that moment. They are not able to enter through the left leg due to getting a blood clot from his first cath he had but then found out as they were entering the right that they are no longer able to go through the right anymore which left them having to go through the neck.</span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitcr_NT8_0rvFUywPiaX4ZuD0EFG8jiTLSkTgKfP-wlC3guWPZ1wmnPH6w-RXAOCz7RbptI6-vCvFo2WT-H0PMSVk1fawoREZpHiw8D4Cj9Z7AhVHhp7RbWkEkoXFLmMGWafOXgBd9hLeQ/s1600/Xander+262.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEitcr_NT8_0rvFUywPiaX4ZuD0EFG8jiTLSkTgKfP-wlC3guWPZ1wmnPH6w-RXAOCz7RbptI6-vCvFo2WT-H0PMSVk1fawoREZpHiw8D4Cj9Z7AhVHhp7RbWkEkoXFLmMGWafOXgBd9hLeQ/s200/Xander+262.jpg" alt="" id="BLOGGER_PHOTO_ID_5628658444444588370" border="0" /></a><br /><span style="font-style: italic;"><br /><br />The pressure in his chest is a little high but nothing to concerning. They would like to see him in the 10-12 range for pressure but he is at 15 so really nothing to serious. So since we had a rocky start that decided to keep him over night just to observe him. It took him a few hours to get his stats back up to the 75-85% area, but he got it there.<br /><br />We did have a a little trouble with him coming out of all the anesthetics ( cranky as all heck ), but he calmed down eventually.<br /><br />This morning during rounds his surgeon, doctor Kaza came to visit and i have to admit it is such a relief not having to remind his surgeon of his name or even ours. he knows what city we live in and he actually has a normal no medical conversation with us about how we are doing our kids etc.<br /><br />once rounds were over they got us out of there and off to our home we went. Its been a pretty quiet day today and lots of loving on him we have done.. Now on to the next week with his Glenn on Tuesday so in the meantime we are going to be doing lots of kissing, playing, holding, & tickling with him before it is taken away for a few weeks. Chapter 2 of his life is going to be even greater and even more rewarding.<br /><br /><br /></span><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTfGEvXmK95QRbeUjJIJ7xMFReUMcDOzEu0f-D_kG97AR_z6hJFj1U6gKfFPTmys6Qxo9GYXPNTG0V6Fr4gjlEklbx9UUGC2lQiy6sMHjLTzZfJepLqtSZqgb0UzHWOxpKWi3soMLCRFrM/s1600/Xander+265.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTfGEvXmK95QRbeUjJIJ7xMFReUMcDOzEu0f-D_kG97AR_z6hJFj1U6gKfFPTmys6Qxo9GYXPNTG0V6Fr4gjlEklbx9UUGC2lQiy6sMHjLTzZfJepLqtSZqgb0UzHWOxpKWi3soMLCRFrM/s200/Xander+265.jpg" alt="" id="BLOGGER_PHOTO_ID_5628664015678024866" border="0" /></a><br /><span style="font-style: italic;"><br /><br /><br /></span>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com1tag:blogger.com,1999:blog-5263364215677617349.post-9319214656107459892011-07-01T21:55:00.000-07:002011-07-01T22:17:29.290-07:00The time has come and the date is set!<span style="font-style: italic;">Well the time is here. I got the phone call last week from the cardi team at PCMC to set up the Xanders surgery date. I am not sure if this happens to all but when i looked down at my phone and saw the 801-662 # my heart started pounding and my hands started to shake, I knew that this phone call was for and did not want to answer it, but knew that it was time. I wanted to cry the whole time I was on the phone with the lady but i held it together until after i hung up. A lot of emotions go through you, Happy, nervous, scared, sick to the tummy, and just plain out MAD.</span><br /><br /><span style="font-style: italic;">That night i watched Xander sleep, i watched him breathe, watched him flutter his eyes as he was dreaming and watched the cute little smiles he would get while having these dreams and I kept thinking to myself " Does he really have to go through this again?" and the stupid "What If's." I swear if i could take his place i would in an instant.</span> <span style="font-style: italic;">Handing your baby over to a surgeon is never the easiest but when you know it is a must its even harder. Nothing is a promise but each day is a gift and i will take those gifts everyday!!</span><br /><br /><span style="font-style: italic;">Xander will be having his heart cath & Eco sedation on July 11th.</span> <span style="font-style: italic;">This will be a 3-4 hour procedure but will allow them to see and know what they need to know or do to help for his surgery!<br /><br />On July 19th Nick & I will be handing over Xander to his surgeon Doctor Kaza to mend Xander's heart for the 2nd time. The procedure that he will be doing this time is called the "Glenn". It will allow Xanders heart to have less pressure this time around and "should" be able to keep up with him until he is between 3-5 years of age and then at that point the next surgery will happen.<br /><br />We are blessed to have Doctor Kaza as our surgeon and it helps knowing that he loves these babies to no end.<br /><br />So with all of this coming up we have been told to have some family outings, so we will be spending the 4th with family and watching Xander's facial expressions as the fireworks go off and enjoying the time we have with him home until the big day, but there will be more to come after as well!!<br /></span>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com3tag:blogger.com,1999:blog-5263364215677617349.post-14900337467277768902011-06-25T12:28:00.001-07:002011-06-25T14:16:37.500-07:00Everything is as it should be!<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw_Byt59zQtrOpjkyq__XgmcT0CrctvVFzjUrGYNSjU9VUPqzf8K-axajtAmjBksXafqSypJPRViJ-8vQlYF4vpV1Irpi7N6zVyoxIKX2tEWAQG6hyphenhyphen4q8Ve584lX783UQ3bi0WXMkImUpq/s1600/Xander+239.jpg"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw_Byt59zQtrOpjkyq__XgmcT0CrctvVFzjUrGYNSjU9VUPqzf8K-axajtAmjBksXafqSypJPRViJ-8vQlYF4vpV1Irpi7N6zVyoxIKX2tEWAQG6hyphenhyphen4q8Ve584lX783UQ3bi0WXMkImUpq/s200/Xander+239.jpg" alt="" id="BLOGGER_PHOTO_ID_5622268800981907906" border="0" /></a><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOYYXb4G1Oh6Y47Di5_wGPx_FM3ezRXwW7cYm-KkqP8siKiofoHhRwPXsfY-qGZQwuYNcNJt9NA_5GtD3iseQK5J0UV_5GAotoaU-MDx7mw5RbvVjjv6EfK35-NY__RVnWi6P7aeOJEdqM/s1600/Xander+237.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOYYXb4G1Oh6Y47Di5_wGPx_FM3ezRXwW7cYm-KkqP8siKiofoHhRwPXsfY-qGZQwuYNcNJt9NA_5GtD3iseQK5J0UV_5GAotoaU-MDx7mw5RbvVjjv6EfK35-NY__RVnWi6P7aeOJEdqM/s200/Xander+237.jpg" alt="" id="BLOGGER_PHOTO_ID_5622268577512140082" border="0" /></a><br /><br /><br /><br /><br /><br /><br /><span style="font-style: italic;">So excited to say that as of June 13th Xander hit is 1 month mark of being home YAY!!! I can not even begin to tell you how it fe</span><span style="font-style: italic;">els to have finally had him h</span><span style="font-style: italic;">ome for such a long period of time!!! Xander is doing really well with all that is going on with him, his surgery is still planned for July but we still do not have a date yet. However we were told that we could take Xander out for his first outing, so what better way</span><span style="font-style: italic;"> to celebrate by going to a birthday party for my cousins little man Jace. The kids were so excited to see each other since it has really been over 3 years since they had done anything together</span><span style="font-style: italic;">. </span>It was a great family first outing with Xander i must say!<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5kuXY6BtFdkY3mrXdT7cbx7LrmuLd6mV-8yZdZPdu3o28ZVuEwpeMBu34NYhsKzcODOheR9lKsRs0yYsN1IxJw8v6QzNam8EtyGpfjiUYOw0U3XGZHrThI9V3VMsZujrxvr0D6QLrWuZe/s1600/Xander+223.jpg"><img style="display:block; margin:0px auto 10px; text-align:center;cursor:pointer; cursor:hand;width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5kuXY6BtFdkY3mrXdT7cbx7LrmuLd6mV-8yZdZPdu3o28ZVuEwpeMBu34NYhsKzcODOheR9lKsRs0yYsN1IxJw8v6QzNam8EtyGpfjiUYOw0U3XGZHrThI9V3VMsZujrxvr0D6QLrWuZe/s200/Xander+223.jpg" alt="" id="BLOGGER_PHOTO_ID_5622269043579060354" border="0" /></a><br /><br /><br /><br /><span style="font-style: italic;">As this month of June comes to an end i am starting to get anxious to have the surgery but only to get out of the Norwood stage, it definitely has been a very rocky one for us, i am not ready to see him hooked up to monitors or having tubes co</span><span style="font-style: italic;">ming out of him</span><span style="font-style: italic;"> again, but i know it is what needs to be done & i know that from here thinds w</span><span style="font-style: italic;">ill only start to get better for him!<br /><br /><br /></span>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-38756379016143586692011-06-06T20:57:00.000-07:002011-06-06T20:57:51.088-07:00Our day at PCMC<i>Well today was Xanders cardi appointment and it was a very long one at that, but from what I have heard spending 4.5 hours up at PCMC is a normal day on appointment day. I have to admit that i did not sleep very well last night, i think all worst case scenarios went through my head which really did not help the nerves. </i><br />
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<i>Xander was such a good little man while he was having his ECO done he just laid there watching the girl and looking at the monitor of his heart, he would occasionally smile at the cute tech and she would tell him how handsome he was which made him smile even more ( such a flirt he is) </i><br />
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<i>After his cardi doc reviewed his ECO we sat down and went over our next steps. As of right now his main concerns with Xander is that he is sweating more and that he is now irritable and has noticed that if he is held up right that he is no longer fussy but once laid down he starts to cry instantly ( now of course most babies its because they are spoiled and want to be held all the time which could be his case but his doc stated that its not that way with him this time due to the ECO results) The Eco showed that his heart is starting to ware and with each pump it does it stresses and makes more pressure with in his chest making him uncomfortable. </i><br />
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<i>So to help with with the stress of the heart they have now put him on </i>Enalapril <i>which will help with the stressful pumping of the heart and relax it more which will give us more time to get him back up to the 10 pound mark for surgery. They have also uped his dosage per hour to help with weight gain. </i><br />
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<i>The process for his heart surgery has now been started and will be happening some time in July. He will first need to go in a week prior to surgery to have a heart cath done ( to make sure all presure in areas are well enough to proceed) and then he will have a sedated ECO done. </i><br />
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<i>July is just around the corner and to be honest is scares me knowing i will once again be handing off my baby X to his surgeon and waiting for updates as the surgery goes on and having my heart up in my throat each time they come in or call with an update. I know that he is in the best hands possible but this momma just wants him in her hands. </i> Xander will continue with his journey and will fight what ever comes his way.Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-8466082506089321962011-06-03T22:59:00.000-07:002011-06-03T22:59:17.603-07:00Getting ready<em>I know that it has been a while since I have updated you all so I do apologize. I am happy to say that Xander has been home as of today for 3 weeks. This is the longest amount of time we have had him home since he was born,it has been so nice as well. We have only been up to primary's once and that was only due to his NJ Tube coming out and needing to be placed back in, it was definitely a different feeling going in with him and actually leaving with him that same night..</em><br />
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<em>Xander is now 4 months old as of the 2nd, its a sad period knowing that he is getting older but its also an anxious period as well. With Xander being 4 months now just means that the 2nd surgery is coming but it may be coming sooner that we anticipated.</em><br />
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<em>Xander is back on his oxygen full time. We started at .12 and we are now at .25 oxygen help, He has started to become irritable and at times forgets to breathe which then throws him into a panic let alone mom. His hands are paler and finger nails are a bit bluer. These are all of our signs that we are told to watch for as he grows so that we can advise doctors of the changes. He also has lost weight. He had been gaining pretty well but just this last week he has started to decline, as of today he weighed in at 9 pounds 11 oz. He had been 10 pounds.</em><br />
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<em>I advised his cardi doc of all of the new changes that we are noticing and instead of having our cardi appointment on June 15th he has moved us up to this Monday June 6th. We were advised that he is going in the CHF (congestional heart failure) phase and that if we need to move oxygen up past the .25 we are to come in.</em><br />
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<em>I have tried my hardest to prepare myself for all of this and for his next heart surgery but to actually see that it is right here soon scares the crud out of me. I know that Xander will forever beat what is thrown his way and will forever teach our family about being strong. I will update on Monday when all is said and done.</em>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-91849318140681842162011-05-16T21:12:00.000-07:002011-05-16T21:12:37.180-07:00Home once more<strong><em>Well our little Xander has made it home once more from PCMC. Xander came home on Friday 5/13/2011. Usually you seem to have bad days on Friday the 13th's but i definitely have to say that this one was a very blissful day!</em></strong><br />
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<strong><em>Now that we have cleared the hurtle of the NEC ( necrotizing enterocolitis) we still need to watch for it as it can come back very easily since he has now had problems with it, but i caught it at the beginning of it the 1st time and i will catch it again.</em></strong><br />
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<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong><em>Xander turned 3 months on 5/2/2011 and once more we celebrated it in PCMC but what better place to celebrate life than up there right. Mothers day came and my only wish was to have all of my kids together in the same room that day so off we went to spend it up in Xanders room, its a day i will never forget and will always hold dear to my heart.</em></strong></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong><em>Life is starting to get back to normal now that we have Xander home. </em></strong></div><br />
<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9aK72t1j1B047H3U3lhWSil_D1NEdR-RgqlsC0aN5fkbguYCeg6J2N4TGnKV_V0x99wVRun2uwIhqVVpjeikkxnvj3vRXL_Y5ibKrbc1UoQx13YBAW3Lwcaj0ETBA3zNdBj4y2penOPkv/s1600/230798_2063445146731_1262812714_32650057_5876590_n.jpg" imageanchor="1" style="clear: right; cssfloat: right; float: right; height: 224px; margin-bottom: 1em; margin-left: 1em; width: 329px;"><img border="0" height="224" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh9aK72t1j1B047H3U3lhWSil_D1NEdR-RgqlsC0aN5fkbguYCeg6J2N4TGnKV_V0x99wVRun2uwIhqVVpjeikkxnvj3vRXL_Y5ibKrbc1UoQx13YBAW3Lwcaj0ETBA3zNdBj4y2penOPkv/s320/230798_2063445146731_1262812714_32650057_5876590_n.jpg" width="320" /></a><strong><em>The only new news i have on Xander is when he came home he was sent home to be on his oxygen 24/7 again, with only having it fully gone for 3 weeks. Xander is having some trouble keeping his stats in the 75-85 area and his lasix has now gone up which both of these are starter signs that the 2nd heart surgery is just around the corner. He is starting to sweat a bit more but color is still good and we have not had to up his air rate of .12 any higher.</em></strong></div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><strong><em>We have his first actual Cardi appointment on June 15th and from there we will discuss when to do his surgery, but my gut instinct tells me we will be doing it late June early July area, but until them we will enjoy the days home with him and get him all strong and ready for that day!</em></strong></div>Waters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0tag:blogger.com,1999:blog-5263364215677617349.post-61804973332358914352011-05-03T21:30:00.000-07:002011-05-03T21:30:18.482-07:00Getting closer to coming home again..<div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfG5mjOvUL3XEy67tAAJmVwLE6pC33wzeh3kLZ9u9WK8aN32ZVP_Ijm9tQAS2-QzsHKOzuqHcUUlpSSddo9SGAyzVob20b1PEAnm6hEm5eMet5VpaI_fxUUXnHx-Jr_CSR2qDpsRBZQKdY/s1600/cool+xander.bmp" imageanchor="1" style="clear: right; cssfloat: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="320" j8="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgfG5mjOvUL3XEy67tAAJmVwLE6pC33wzeh3kLZ9u9WK8aN32ZVP_Ijm9tQAS2-QzsHKOzuqHcUUlpSSddo9SGAyzVob20b1PEAnm6hEm5eMet5VpaI_fxUUXnHx-Jr_CSR2qDpsRBZQKdY/s320/cool+xander.bmp" width="272" /></a>It will be 2 weeks this Saturday that Xander has been back in the hospital after only getting out on the 16th of April and was home for a week, But i am happy to report that his NEC has subsided and we are doing great. As of Monday they took him to have a swallow test done and unfortunately he failed on the thin but passed on his thickness, so they replaced his NJ tube after 10 days of not being able to have food while his intestines rested.</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">Now for today our little Xander decided he was going to be a naughty little man and pull that NJ tube right out, so that the speech therapist could not come in and make him eat from a bottle with thick nectar to see if we would be able to just go to a NG tube instead, but nope Xander wanted it his way...</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;">I am so happy that we caught his NEC early and are not going to have to do the surgery. I am ready again to have him home but this time i would like him to stay home since on Monday 5/2/2011 he turned 3 months and that only gives us up to 3 months at the longest before his next heart surgery and I want to be able to hold and play with him as much as i can before all of that. </div><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><br />
</div>But for now i will let him enjoy the spoiling he is getting up there by all the nurses just as long as he agrees that once he gets home he's home for a bit lolWaters Familyhttp://www.blogger.com/profile/06077203870599527381noreply@blogger.com0