tag:blogger.com,1999:blog-90073086469398243652024-03-13T03:25:19.392-05:00Big Brady & Lil' NateCarole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.comBlogger347125tag:blogger.com,1999:blog-9007308646939824365.post-89803660792092268942017-08-08T12:59:00.000-05:002017-08-08T12:59:38.775-05:00You can thank Karen's Mom!Tap tap tap....Is this thing on?<br />
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I feel a little bit foreign even being on this site. It took me a couple of minutes just to get logged in, forgetting so much of how I used to do this!<br />
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Why am I here?<br />
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Good question! I cannot believe the passage of time since the last time I wrote. But in the last year, more frequently than I ever imagined, people have asked me about the blog and why I wasn't updating anymore. I've felt the nudging to get back to it, but just didn't have what it took to get back on here.<br />
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But then Karen's mom happened.😄<br />
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A sweet message passed along to me, through my sister, gave me that encouragement to do it!<br />
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I know there are so many people who have invested much care and concern, love and prayers to our family. We could not have navigated these years without each one of you.<br />
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Where have I been?<br />
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Although we have not had major surgeries or illnesses, the last number of years has felt more intense than before. I'll share more as it feels right, I'm sure. But to try to summarize, here are some of developments in our family:<br />
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<li>Nate has been diagnosed with a lung disease. He has areas of bronchiectasis in one lung. This was discovered after years of different kinds of testing, and finally confirmed through lung CT and bronchoscopy. This means new daily 'at home' therapy with 7% saline nebulizer treatment and breathing/lung physiotherapy. </li>
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<li>Nate's heart function has been good!! 💗 His left sided ventricle (right ventricle) is still somewhat enlarged. He has had some very brief arrhythmias, but we've never been able to capture them. His mechanical heart valve is doing its job and the Warfarin (blood thinner) has been keeping him safe, even though those levels can fluctuate quite a bit and require frequent testing. </li>
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<li>Brady is now 11 and entering Grade 7, Nate is 9 and entering Grade 4. With Nate's growing awareness of some of the things that make him special and unique, comes some tough realizations that he has begun vocalizing. This has been difficult. To see him so unhappy and upset and saying he wished God didn't give him his special heart is hard. It isn't fair to him, that he has to do these hard things and Brady doesn't have to. Brady continues to be protective and keeps Nate safe wherever he is. Brady also will duke it out and have very typical brotherly interactions with him!! Nate gives it back just as well!! </li>
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<li>As for me, dealing with the emotions and day to day life of our Braveheart is consuming and mentally demanding. I stepped back from my position at work, and now work only a couple of hours a week on my own time. This has been a good move for me. Mornings were too unpredictable with health issues and therapy time, and this change has given me the flexibility I needed. We try to keep our life pretty simple and not filled with too many extra activities. </li>
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So, here I go again! This is just our story. With mess ups and fails along the way. Hopefully some fun laughs and victories, too!<br />
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Here's a snap from our summer holiday! Enjoying the incredible Niagara Falls!<br />
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<br />Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com3tag:blogger.com,1999:blog-9007308646939824365.post-56945841464679548422014-04-21T23:36:00.001-05:002014-04-21T23:36:11.941-05:00An Anniversary...of sorts<div class="separator" style="clear: both; text-align: center;">
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Well, too much time has passed (again), but today felt like a good day to update! Someone very dear mentioned to me that every time she checked the blog and saw the "Adios" post come up again and again, she wondered if maybe that was the end of my blogging. :)<br />
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So, to be honest - (and this blog is all about that!) - this is where we've been at lately.<br />
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This time around, it was my heart that was being checked. Throughout December, January and into February I was feeling unwell. I was having frequent chest pain, irregular heart beats, strange headaches, sudden onsets of extreme fatigue and just a general feeling of unwell.<br />
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After going through the medical tests of blood work, EKG, and a 24hr Holter monitoring (just like Nate ;) ), the doctor summed it up as 'stress'. For me, that was actually a relief to hear! I wasn't feeling any more stressed than I have in the past, but for some reason, it just got to the point of the stress manifesting itself through physical symptoms. I haven't changed anything in my life since then either, but I have been feeling 97% better for the last two months, and I thank God for the healing He has brought me.<br />
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Anyway, that explains my absence here (I hope!). And leads me to reflect on the past year - especially today - when we think about where we were exactly one year ago today. Don and I were in sitting outside the doors of the CICU at the Stollery in Edmonton, while Nate was in the middle of surgery. What a flood of emotions that return. This year of recovery has felt long and hard, but to see where we've come from and where we are now fills me with thankfulness! And to spend the Easter weekend with family, celebrating the gift of life, forgiveness and love of our Lord, completes this fullness.<br />
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So here is a quick look back at the last few months!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinWq7zVe31sRefnTrvdqUqum-vNRdZs66G4Iaf1z45Nx4hZSYtUEQQFDoFdfO9cHuq_eN2uWlv47_XICb21rVjAhyphenhyphen7Wn6J9r-1ZOqEfsES9uICGSyLFnUmydSjW_kUpLiD7ODE9hEW0uMW/s1600/IMG_2069.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEinWq7zVe31sRefnTrvdqUqum-vNRdZs66G4Iaf1z45Nx4hZSYtUEQQFDoFdfO9cHuq_eN2uWlv47_XICb21rVjAhyphenhyphen7Wn6J9r-1ZOqEfsES9uICGSyLFnUmydSjW_kUpLiD7ODE9hEW0uMW/s1600/IMG_2069.jpg" height="298" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It was a very LONG and very COLD winter.....</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9JsRDdTWW8rk8MZtrdTJAPAd-CpOJUHx2qWHK2ZP6fX5BO_8Qvf0PdKLcd1L2rRYVsrj-IsPZX_0Vp28hIFGcLb-Nx4Ee5K0-kMi80jAR76_ThjBnZ6OWPOZSftL1r8KmS1fOlZoACxWM/s1600/IMG_2071.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg9JsRDdTWW8rk8MZtrdTJAPAd-CpOJUHx2qWHK2ZP6fX5BO_8Qvf0PdKLcd1L2rRYVsrj-IsPZX_0Vp28hIFGcLb-Nx4Ee5K0-kMi80jAR76_ThjBnZ6OWPOZSftL1r8KmS1fOlZoACxWM/s1600/IMG_2071.jpg" height="400" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">But there was also beauty in it!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnC1aK679lg7znCkKxLZaQE5KANLUTYFFnhModt-_1DRRP-lpqCJEy40Yb125XlqKeM-lDaYP_DS2h-i88ao2S7Z4F2fiEjM4s94slwGsf4JcxwCSd6MKpoBeG7909LwfQWhdu5ehNmG0e/s1600/IMG_2147.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnC1aK679lg7znCkKxLZaQE5KANLUTYFFnhModt-_1DRRP-lpqCJEy40Yb125XlqKeM-lDaYP_DS2h-i88ao2S7Z4F2fiEjM4s94slwGsf4JcxwCSd6MKpoBeG7909LwfQWhdu5ehNmG0e/s1600/IMG_2147.jpg" height="298" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Winter holiday = A night away and a lot of pool time!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXx04CAhgYWvjxbeW2QJF3lZ1VvZgqJctNDvk854WHVaVMvCqBgGJxQPnOqSixN9XitdEFjDw6A_hZDs9nWwHn-avO929X5lB3QG0shz9DNqsG1n_nUlWCJ6O0Arp7VMB-f_-2AVyvqBXQ/s1600/IMG_2347.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXx04CAhgYWvjxbeW2QJF3lZ1VvZgqJctNDvk854WHVaVMvCqBgGJxQPnOqSixN9XitdEFjDw6A_hZDs9nWwHn-avO929X5lB3QG0shz9DNqsG1n_nUlWCJ6O0Arp7VMB-f_-2AVyvqBXQ/s1600/IMG_2347.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Awana car races...</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDfHgEqvvIVCuZOFfMTSQUY44UGS5CsgDozCE5oLObu65Xk5PPZFSd8of6TKK0K56p_3ccVZVC7TdRXr9Y0AOXuN0Y5GYx5d5ES00SpF5Fekkpp0xoTnLzwA52OKlwBIhyphenhyphenwmLHgwEzyqGj/s1600/IMG_2348.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhDfHgEqvvIVCuZOFfMTSQUY44UGS5CsgDozCE5oLObu65Xk5PPZFSd8of6TKK0K56p_3ccVZVC7TdRXr9Y0AOXuN0Y5GYx5d5ES00SpF5Fekkpp0xoTnLzwA52OKlwBIhyphenhyphenwmLHgwEzyqGj/s1600/IMG_2348.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">...with Grandpa</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTu60aoAUvsq9Hlcu3XL57fnxfy5kh4g53uKAomN_oTY6xoNln8H4qrsU7hE3zEnCcyrk5Z9OUAcZ-SvrsAIPZSTOAfu_l3xp6NY1SfqybfBpJuAZnNzNse7biKEoq0iANPRDbG5tHiynf/s1600/IMG_2405.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhTu60aoAUvsq9Hlcu3XL57fnxfy5kh4g53uKAomN_oTY6xoNln8H4qrsU7hE3zEnCcyrk5Z9OUAcZ-SvrsAIPZSTOAfu_l3xp6NY1SfqybfBpJuAZnNzNse7biKEoq0iANPRDbG5tHiynf/s1600/IMG_2405.jpg" height="400" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">School project to create The Burj (also Sports dress up day!)</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMWDtHKtEdAXqQJq17da4SLgJQEg1URpkQGVirgt7zCfqO98Y8cfYAKIXc5cUDFMuySv9n1Cr8V9k5qHzylOvbSEKl9exbYcAJvi3D4iXiVtR3ToKxy-6U638SPqJuOXTSdhpm2YKxa1LU/s1600/_DSC9987.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMWDtHKtEdAXqQJq17da4SLgJQEg1URpkQGVirgt7zCfqO98Y8cfYAKIXc5cUDFMuySv9n1Cr8V9k5qHzylOvbSEKl9exbYcAJvi3D4iXiVtR3ToKxy-6U638SPqJuOXTSdhpm2YKxa1LU/s1600/_DSC9987.jpg" height="265" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My cuties<br /></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5l3wo1bSGeLCpLoNXCvJL5D9w2VN1MAHkqsnl1vnn8FP0ZotfCerZG1rO07nLuiN63YY2KS5SGn9Lma3-wxvuMkJrBW82haToIiyeamGgumY50mKG-b7yForFPf2BZJQh6z8TxgCwonLS/s1600/IMG_2428.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5l3wo1bSGeLCpLoNXCvJL5D9w2VN1MAHkqsnl1vnn8FP0ZotfCerZG1rO07nLuiN63YY2KS5SGn9Lma3-wxvuMkJrBW82haToIiyeamGgumY50mKG-b7yForFPf2BZJQh6z8TxgCwonLS/s1600/IMG_2428.jpg" height="300" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lego hockey - why not!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF5yJHV_CwihVYL1-P_IDsP7XRgvOGkKsM22lMt6LFWir2pkInYJ5EHTNrZzXS8KXqThSi08MhM34Px0TbYpWS_jjtA5IJ7u0iX3233KM8JfzwF6GOq3pCBn8_KHeQig5RDxjb8qdFqZWO/s1600/_DSC9942.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhF5yJHV_CwihVYL1-P_IDsP7XRgvOGkKsM22lMt6LFWir2pkInYJ5EHTNrZzXS8KXqThSi08MhM34Px0TbYpWS_jjtA5IJ7u0iX3233KM8JfzwF6GOq3pCBn8_KHeQig5RDxjb8qdFqZWO/s1600/_DSC9942.jpg" height="265" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="font-size: 13px; padding-top: 4px; text-align: center;">On the last shinny morning, the parents joined the kids. Watching the moms and dads 'try' to stretch along with the kids before the game was priceless!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGpdAvCiT90g2sXIYRB5bzPsrn95Kqjjr8loEW8pl5_kYQs9MOcxPxi6Y47c_92sbZku1rRLTtWHflutSvJsjBk4ytYw_wqrINEkwLqVZXQrqZJXLGl_sdLw_mou09X-2gO_atHuSPO30R/s1600/_DSC0011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGpdAvCiT90g2sXIYRB5bzPsrn95Kqjjr8loEW8pl5_kYQs9MOcxPxi6Y47c_92sbZku1rRLTtWHflutSvJsjBk4ytYw_wqrINEkwLqVZXQrqZJXLGl_sdLw_mou09X-2gO_atHuSPO30R/s1600/_DSC0011.jpg" height="265" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Easter Sunday</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHLFVYsUl4HR6KS0lk8p8KShHyTJoPQVUmw9nyx6jDGV6AyD3uMF9xRJg1lA-QRIDpcmcJ8nM5aZmro6Zxg7SBAm6mDeViOTj85yPZ5JUm7vOvE3pb6jRrOPn8WF3nnD3r-0MQrHNBNK7D/s1600/IMG_2263.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgHLFVYsUl4HR6KS0lk8p8KShHyTJoPQVUmw9nyx6jDGV6AyD3uMF9xRJg1lA-QRIDpcmcJ8nM5aZmro6Zxg7SBAm6mDeViOTj85yPZ5JUm7vOvE3pb6jRrOPn8WF3nnD3r-0MQrHNBNK7D/s1600/IMG_2263.jpg" height="295" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">And today....boys will be boys! (And the snow is gone!!)</td></tr>
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And here are a couple of throw back pics from exactly one year ago to show where our family was at. A quick pre-surgery family photo, and Brady being loved and taken care of by Grandma and Grandpa during that time.<br />
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2tag:blogger.com,1999:blog-9007308646939824365.post-86749761492100862722013-12-31T23:50:00.000-06:002014-01-01T16:04:05.723-06:002013, I'm ready to say adios!<div class="separator" style="clear: both; text-align: center;">
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I don't really know where to begin.... It's a bit ridiculous that it's been 6 months since I last let you in on a family update.<br />
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There are many reasons, but when it comes down to it, it's simply been easier to not talk about it. To sum it up, 2013 has been the most difficult year for us. And while it feels "appropriate" to talk about our struggles during acute times (ie. a surgery or illness), when those struggles continue on and on, in the absence of any notable circumstance....well, it just feels like it's getting a little old. So, to keep on blogging about hard life didn't hold any appeal to me. And I'm a person who would often rather grin and bear it and put on a happy face, than to broadcast downer after downer.<br />
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The reality of this year became very clear to me just a couple of weeks ago. I was looking through all of my photos from 2013, in hopes of putting together a Christmas card. As I looked at these photos, month by month, I couldn't help but bawl. Especially when it came to pictures of Nate, and seeing his eyes in each of those pictures. Our Braveheart has endured so much.<br />
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Since that update way back in summer, the road to recovery (again), was very long and very hard. It took many weeks to get him back to eating properly, and even longer to get his blood levels and warfarin meds balanced. His very strong will, which has giving him lots of good fighting power, has also given his mom a lot of heartache, as he struggles to assert and create a sense of control in situations. And while we were still working on all of this recovery, it was time for him to start kindergarten.<br />
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By the grace of God, the skills of his most amazing KG teacher, and unending prayers, after a few weeks, he had transitioned into the wonderful world of kindergarten at JR Walkof School. Those first weeks brought such despair to my heart, seeing him struggle, emotionally and mentally, fighting (literally) against what was supposed to be a positive and exciting time.<br />
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And then the unexpected issues of dealing with Brady's silly and distracting behavior at school came as a bit of a shock. Brady has always been the 'easy' one. Things have always come easily to him. He has coped and compensated with the crazy life that we have. He's being flying under the radar, not giving us anything to worry about. I always was so thankful that God was so gracious to give us a child that just seemed so 'easy'. Loving to go to school everyday. The most kind and comforting little/big guy when he sees anyone struggling. Protective like crazy over his brother - watching out for him in all the situations. While still fulfilling his brother role as a good pest!! So suddenly having to deal with school situations kinda heaped onto an already full load. <br />
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So, I haven't really felt like blogging. Even though I did feel the nudge that it was something I was called to do. One Sunday, our pastor was talking about being "Sent". What I extracted from the sermon and applied to my life was this (to summarize very humbly in my own words; what his words said very eloquently, clearly and passionately): What good is my life....my story, my journey, my God moments, my struggles, if I keep them hidden away in 'draft form', saved and sitting in my outbox. How does God get the glory through what He's doing, showing us and blessing us, if we just keep it all hidden away. I've been SENT. I can't keep my 'letter' saved but not sent. I am God's letter of love, his message, to be shared with anyone and everyone, to show how my story connects with HIS story. And because you're a child of the King, you are his story, you have a mission. He chose you!! He chose you to be in this place at this time. You are a missionary. You are sent.<br />
<blockquote class="tr_bq">
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;">I Corinthians 3:2-3</span><br />
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span"><span class="text 2Cor-3-2" id="en-NIV-28844"><sup class="versenum" style="font-weight: bold; line-height: normal; vertical-align: top;"> </sup></span></span>You yourselves are our letter, written on our hearts, known and read by everyone.<span class="Apple-style-span"><sup class="crossreference" style="font-weight: bold; line-height: normal; vertical-align: top;" value="(<a href="#cen-NIV-28844C" title="See cross-reference C">C</a>)"></sup></span><span class="Apple-style-span"> </span><span class="Apple-style-span"><b> </b></span><span class="Apple-style-span"><span class="text 2Cor-3-3" id="en-NIV-28845">You show that you are a letter from Christ, the result of our ministry, written not with ink but with the Spirit of the living God,<span class="Apple-style-span"><sup class="crossreference" style="font-weight: bold; line-height: normal; vertical-align: top;" value="(<a href="#cen-NIV-28845D" title="See cross-reference D">D</a>)"></sup></span> not on tablets of stone<span class="Apple-style-span"><sup class="crossreference" style="font-weight: bold; line-height: normal; vertical-align: top;" value="(<a href="#cen-NIV-28845E" title="See cross-reference E">E</a>)"></sup></span> but on tablets of human hearts.</span></span></span></blockquote>
(It is an awesome message - you can <a href="http://inspireequipemerge.com/sermonsmedia/sermons" target="_blank">listen or watch it here</a>, it's called I Am Sent)<br />
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Not only did it hit me in a powerful and literal way....but figuratively too. God has chosen me for this story, and the one way I am able to share my story - our family's story - is through this blog. It's one way that God's story can be sent out!<br />
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So now, as this year draws to an end, it's time to reflect on how God has been beside us every step of the way, showing His love to us in so many ways. And to be thankful for new grace. And a new year.</div>
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Some of the awesome/blessing/thankfulness moments of 2013:<br />
<ul>
<li>While Nate's GT Racing snow accident was definitely not a praise item, so thankful this happened before his surgery and being put on blood thinners.</li>
</ul>
<ul>
<li>Our Home. The most awesome blessing that I'm reminded of daily. Having the school in our backyard (literally) is amazing. And the heating vent that is situated at the base of the sink cabinet which warms my toes so nicely while washing dishes!</li>
</ul>
<ul>
<li>My family and friends - for their absolute love and commitment. For praying for us. For letting me be real.</li>
</ul>
<ul>
<li>Nate's brand new 'heart part'. So thankful his valve is working so well, and helping his heart not have to work quite as hard.</li>
</ul>
<ul>
<li>Lego.</li>
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<ul>
<li>Employers who understand our need to take time off work so often.</li>
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<ul>
<li>The Wish Foundation, who told Nate he would be getting a wish granted.</li>
</ul>
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<ul>
<li>Love gifts received from those who care so much for our family.</li>
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<ul>
<li>Heart moms and dads and families who walk the same road as us and support us through it.</li>
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<ul>
<li>The best week of the year - camping in July - where healing really began.</li>
</ul>
<ul>
<li>The Love of Learning - by my Brady, who was called 'a talking encylopedia' by his teacher last year. He knows more than me on a lot of topics.</li>
</ul>
<ul>
<li>Teachers: who love and care for our kids, who teach and train them when they are at school</li>
<li>Sheepskin... to snuggle under on a cold day- what can I say, it just keeps me warm. (You'll understand if you are living through Manitoba's deep freeze of -35C right now. To my warmer America friends, that's -31F!! oh ya!!)</li>
</ul>
<span class="Apple-style-span" style="font-family: Times, 'Times New Roman', serif;"><span class="Apple-style-span" style="font-size: 16px;">James 1:17 Every good and perfect gift is from above,</span><span class="Apple-style-span" style="font-size: 16px;"><sup class="crossreference" style="font-size: 0.65em; font-weight: bold; line-height: normal; vertical-align: top;" value="(<a href="#cen-NIV-30284A" title="See cross-reference A">A</a>)"></sup></span><span class="Apple-style-span" style="font-size: 16px;"> </span><span class="Apple-style-span" style="font-size: 16px;">coming down from the Father of the heavenly lights,</span><span class="Apple-style-span" style="font-size: 16px;"><sup class="crossreference" style="font-size: 0.65em; font-weight: bold; line-height: normal; vertical-align: top;" value="(<a href="#cen-NIV-30284B" title="See cross-reference B">B</a>)"></sup></span><span class="Apple-style-span" style="font-size: 16px;"> </span><span class="Apple-style-span" style="font-size: 16px;">who does not change</span><span class="Apple-style-span" style="font-size: 16px;"><sup class="crossreference" style="font-size: 0.65em; font-weight: bold; line-height: normal; vertical-align: top;" value="(<a href="#cen-NIV-30284C" title="See cross-reference C">C</a>)"></sup></span><span class="Apple-style-span" style="font-size: 16px;"> </span><span class="Apple-style-span" style="font-size: 16px;">like shifting shadows.</span></span><br />
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<span class="Apple-style-span" style="font-size: large;">BRING ON 2014!!!</span><br />
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And since pictures make everything better, here's a little year in review and some of the fun and happy moments!<br />
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<tr><td class="tr-caption" style="text-align: center;">January - to Edmonton for his cardiac MRI</td></tr>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQIhYoqKvA3wtCrKTKk044fVt4d4t6CAJyf-KuIFqOhIcoCi2OHx7Lmy7pvJmV4XCJD3-We302VM8VjDBCYoeKiiDVQgrLByLVQQdrYWZsl4su2pjBiOrDfiPwSWamrg6gBf1Kdsb3rI4o/s1600/IMG_0043.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQIhYoqKvA3wtCrKTKk044fVt4d4t6CAJyf-KuIFqOhIcoCi2OHx7Lmy7pvJmV4XCJD3-We302VM8VjDBCYoeKiiDVQgrLByLVQQdrYWZsl4su2pjBiOrDfiPwSWamrg6gBf1Kdsb3rI4o/s400/IMG_0043.jpg" width="300" /></a><br />
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<tr><td class="tr-caption" style="text-align: center;">One of their favorite things!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Starting some renos</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikPXHjL4vW6SbwOu9wtkVXheQrxNZmRmFo_PL-VgW7tXNIackUYL3sUy6KfBZ6VOtIhW71DxSn6af15pOm1m9PFivu_fhtn3YQ58Iik8S9mTus9sFcsLtCUpUlrf7NWh1lSAZ_eOFTh71L/s1600/IMG_1237.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikPXHjL4vW6SbwOu9wtkVXheQrxNZmRmFo_PL-VgW7tXNIackUYL3sUy6KfBZ6VOtIhW71DxSn6af15pOm1m9PFivu_fhtn3YQ58Iik8S9mTus9sFcsLtCUpUlrf7NWh1lSAZ_eOFTh71L/s320/IMG_1237.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You can't find a better seat??? Seriously?</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Lost 4 teeth....Canadian hockey player?? Swollen, but amazingly no other injuries.<br />
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<tr><td class="tr-caption" style="text-align: center;">Bi-ventricular pacing wires, PA band removal, tricuspid valve replacement and VSD closure. April 2013</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Chillin'</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Make-a-Wish event at the hospital...ironic!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMrrnVdp59vtQu-8tvkr9T017HOTu8CNbBOthyphenhyphen5_dogiIz832mMv6m3i7nlmWJdh96NN1C8FkgRCJ5DqH-r4rUVuvAi-PprD1vr1OQfc6-tc74k3q2Xv0p7GmuHVv6cE_76jLbs8hSRoyf/s1600/IMG_1351.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhMrrnVdp59vtQu-8tvkr9T017HOTu8CNbBOthyphenhyphen5_dogiIz832mMv6m3i7nlmWJdh96NN1C8FkgRCJ5DqH-r4rUVuvAi-PprD1vr1OQfc6-tc74k3q2Xv0p7GmuHVv6cE_76jLbs8hSRoyf/s320/IMG_1351.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Saying Hi to Spiderman.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The day after returning home from the hospital was his birthday!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Nate is always ready for a jeep ride.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Our Slugger!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjmCWoZwkWAj7mt-wtsseMxAyeKetZLMwI3rFHQ8UAJdYhgN6vOMPB_ewf7bvItEKcxKvnOXSxrP1MrB9mhA0GePi5COJWgjrOGtl5aCF6G0kwUcv3CWCQvpmQQJQZ8eh3fIgCTadmHTxI/s1600/_DSC9311.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjmCWoZwkWAj7mt-wtsseMxAyeKetZLMwI3rFHQ8UAJdYhgN6vOMPB_ewf7bvItEKcxKvnOXSxrP1MrB9mhA0GePi5COJWgjrOGtl5aCF6G0kwUcv3CWCQvpmQQJQZ8eh3fIgCTadmHTxI/s400/_DSC9311.jpg" width="264" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Too soon post-op to play, but came to cheer!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">The best week of our year!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Our little fish!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu01uKsBIWSJHsL17ag9OwW0ZkBU6P71Y-tNgfk_oyFKrTAcqAWi_3rOpJVUxZx2YMttBUW37Kv3rzMOLeER1d8iWKfpQ4RW3s1w6JOLcLK8duNrL-r3GAHEEOKt-ffGIGJUE37212O_X_/s1600/IMG_1792.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu01uKsBIWSJHsL17ag9OwW0ZkBU6P71Y-tNgfk_oyFKrTAcqAWi_3rOpJVUxZx2YMttBUW37Kv3rzMOLeER1d8iWKfpQ4RW3s1w6JOLcLK8duNrL-r3GAHEEOKt-ffGIGJUE37212O_X_/s400/IMG_1792.jpg" width="300" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Closest thing to a family picture!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0lv4k3a2SC8BogBZPofjVSUr7duzKRJNd9lsH6vMJgFOFtKKD4q082UTTGrYiH6O4nAL5NPmSKiXN3UqGGSqLj0Pm9tGvcJc6y0N6SJtzpXLiXXBMO7VUsplehR09MM5iVnmHUn5GKJZN/s1600/IMG_1856.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh0lv4k3a2SC8BogBZPofjVSUr7duzKRJNd9lsH6vMJgFOFtKKD4q082UTTGrYiH6O4nAL5NPmSKiXN3UqGGSqLj0Pm9tGvcJc6y0N6SJtzpXLiXXBMO7VUsplehR09MM5iVnmHUn5GKJZN/s400/IMG_1856.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The best part of Brady's summer was THE FARM!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First day of Grade 3</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">First try at Kindergarten ;)</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Loves kitties!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Incredible 5 days at a work conference in Banff.</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Rivals!!! Had an awesome night!!!</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Everything was Minecraft for his 8th b-day....and we <br />
don't even have the game!!</td></tr>
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-89127278135255509922013-07-29T22:27:00.000-05:002013-07-29T22:27:19.605-05:00Highs & LowsJust about 4 weeks into our summer holidays...and it's been a mix of awesome highs and some pretty nasty lows.<br />
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I've got to start with the fun stuff, since that's how our summer holiday started! We spent our first week of holidays down at Potato Lake, near Park Rapids MN. There's a reason we keep going back. We have such a great time! If I said everything I could about camping down there, this would start to sound like a tourism blog! I just can't say enough about the place! So I'll keep it brief, since some of you have been asking about where we went (with photos from this year and the last few years).<br />
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First, the <a href="http://www.vagabondvillage.com/" target="_blank">campground</a> is amazing. It's a family owned/run campground, right on Potato Lake, with facilities that include a great pool, immaculate buildings, play structure, ice cream shop.... oh - and there's wifi!!!<br />
There is just so much to do in this area - so I'll mention a few...<br />
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The lake - boating in general is great fun, but a boat ride out to the sand bar is always a must-do activity. You just 'dock' your boat in the sand, and get out into the water that's about a foot deep, and play water games or just park your lawn chair in the water and relax. We rented a pontoon boat this time, and enjoyed our time at the sand bar as well as just cruising around the lake, dreaming about life at one of the amazing lake front homes.<br />
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The biking - Minnesota has converted old railway lines to beautiful, asphalt paved bike paths. The Heartland trail is a 49 mile path that connects Park Rapids to little towns along the way, through wooded areas and farm land. It's so much fun, the scenery is amazing, and not having to worry about traffic when biking with kids is great! The stretch that we biked took us to a tiny little town (not sure if it's really a town - more like an abandoned town, turned restaurant and touristy strip - called Dorset). A stop at the old fashioned ice cream parlor or supper at the Mexican restaurant is a must!!<br />
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The food - Really, camping is all about the food!! And not always cooked at the campsite either! A favorite destination is the nearby Logging Camp for a breakfast fit for the lumberjacks! The site has some old logging machinery and buildings to check out, but breakfast is the main draw! It's an all you can eat, eggs/ham/hashbrowns/pancakes type meal, served family style at large dining hall tables.<br />
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The Fourth - We've always been there over the 4th of July. This in itself is quite the experience - But when in America....do as the Americans!! It's pretty awesome! The campground owners (siblings, 3 sisters and a brother) organize a Bike Parade for all the camping kids. The kids all get a bag of decorations for their bikes, and after putting all the finishing touches on, they parade through the whole campground, to the cheers and applause of all the campers watching. <br />
We've enjoyed the afternoon 4th of July parade in Park Rapids, too. A little different from our local parades here!! And we head back to Park Rapids at dusk for the fireworks - a fun day in our week of camping!<br />
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The pool - This is where we spent a lot of our time! It was also a hi-light for Nate. I finally saw the joy in him, as he spent hours paddling around the pool with his life jacket on. It was just the break from routine that he needed. He loved it!<br />
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New things to explore - This year was the first time we went to a local amusement-type park. It had the typical bumper boats, mini golf, batting cages, laser tag, etc. Next year, we'll probably plan to spend more time there, as there was a lot for the kids to do.<br />
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The downtown - Park Rapids has your typical old fashioned, downtown strip filled with shops. From candy stores, clothing, trinkets, restaurants, home decor, and everything in between. <br />
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The Mississippi - For the cool factor of being able to say you walked across the Mississippi, a stop at the headwaters of the Mississippi River is a must. A fun learning expedition to boot!<br />
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The camping - And then there's just the sitting back, enjoying snacks around the campfire, games and stories that extend into the late nights. The slow moving life....where meals are prepared the slow way, and enjoyed in the great outdoors. Even washing dishes outside is more enjoyable!<br />
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So yes, this summer has had some pretty great highs....and it almost seems I shouldn't speak of the lows....but this is life - our life - and what's life, if you can't share it with others?!<br />
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After coming home from holidays, and spending another great week at home, the sickies struck me and Nate. I'll call it the flu... the fever and cough flu. I got through it and was feeling totally good after 4-5 days. Nate, on the other hand, was a different story. <br />
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He came down with the fever on Sunday and the next 8 days were pretty horrible. He was lethargic, coughing like crazy, and not eating more than a nibble per meal. A day or two like this would be acceptable for a child with the flu....but with Nate, and other children with chronic conditions, it's another story. By Wednesday, we had to do something, and the heart clinic agreed. I checked his INR (blood thinner level) on Thursday and it was way out of whack. That's one of the issues with being on blood thinners: it's effectiveness is directly connected to your diet, and the food consumed. Since Nate was on day 5 of not eating, it had caused his levels to get very high. We saw a local doctor, who after seeing his chest x-ray (which didn't look too bad yet), decided that in a case like this, you err on the side of caution and get some antibiotics in. It took another 4 days of not eating, the lethargy continuing, and the blood being unstable (doing daily finger pokes to check levels, and adjusting his Coumadin dose daily) before he seemed to turn the corner. It was the next week Monday, and he finally woke up with a small amount of energy, was a bit more chatty, and actually requested some food. All I could do was thank Jesus! What a long and exhausting (emotionally and physically) week.<br />
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So after coming off that "low", this last week has brought us back on the road to regaining some stability in his blood, and, back to square one, it seems, in regards to his attitude and behaviour. It's been a difficult parenting week. In fact, after a difficult day today, Don just joined me in the living room and said if we were drinkers, he can't imagine the amount of alcohol we'd probably be consuming!! Instead, we're going to eat some strawberry pie and watch a couple of episodes of 24 (yup, just getting into that show...about 10 years behind!!).<br />
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So that's been our July. The camping trip really did amazing things for Nate. The complete change in routine and environment seemed to bring the old Nate back to us. He has never been so happy as he was in the pool. For hours each day, our little fish found happiness and joy in the simple things! Maybe we need to get out for another week of camping now.... see if it works again!<br />
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<br />Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com0tag:blogger.com,1999:blog-9007308646939824365.post-15745596286645162892013-06-11T22:52:00.001-05:002013-06-11T22:52:28.725-05:006 Weeks...Well, we've made it to the 6 week mark!<br />
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It's been pretty quiet here on the blog. No excuse; just the reality....we've been in the trenches.<br />
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And now that we're starting to see a glimmer of life post surgery....life that is becoming a bit more 'normal' and a bit more tolerable....I can now admit how tough it's really been.<br />
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It's been all around tough.<br />
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Appetite tough...<br />
Going out in public tough...<br />
Medicine tough...<br />
Mentally exhausting tough...<br />
Blood test tough...<br />
5 yr old needing control tough...<br />
Marriage tough...<br />
Simple things tough...<br />
Overwhelming tough...<br />
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I think you get the idea :)<br />
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But how can I complain, when Nate is here....with us! He is doing well!! I am so thankful for the incredible progress I see, as recently as the last week.<br />
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Taking his meds is now routine - dare I say easy? A far cry from having two adults and 4 arms holding him down while shooting in the nasty stuff to the back of his mouth. We've got a routine down pat, that includes his favourite chips and his beverage. So what if he's eating chips after breakfast!! I'm also not having to be a chemist - crushing and mixing and 'hiding' his Coumadin everyday. He's chewing those pills (again, with Doritos - but I'm not complaining!!) and that has been such a relief!<br />
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His finger pokes are still never fun, and I do like to make sure my windows are closed before doing the poke (it can still get a little noisy :) ), but the frequency has decreased, which makes it much easier.<br />
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His appetite is still sketchy. We have not had a normal breakfast or night snack in 6 weeks (normal being cereal, toast, etc.), but really - so what if he's having pasta for breakfast....it's all carbs anyway! Cooking meals has been frustrating, as I do try to cater to his tastes, often to have him take one bite and promptly tell me he's full. Or demand an entirely different meal. You will understand my willingness to cook according to his needs, when you've been in a situation where zero food is going in....you'd do just about anything to get him to eat.<br />
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His energy level has improved! Now that the majority of the healing has taken place, it's time to see how he will tolerate activity and endurance. At this point, Don and I both agree that his energy level has improved from pre-op. Even in just the last week, I've been so impressed with his desire to be active and the progress he is showing. He still knows when he's tired, and self regulates his activity. But we've come a long way, from even a few weeks ago, when I was doing a LOT of carrying him around!<br />
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Through it all, Brady has been the most awesome Big Brother. He is so keenly aware of Nate and his activities, and is always the first to ask Nate if he's okay. In the first few weeks post-op, when the boys were playing in the yard, Brady came to me and said he thought Nate's heart was ticking a bit too fast. Another time, when Brady wanted to go play ball at the school yard behind our house, he got out a lawn chair and brought it to the field for Nate to sit on and watch....it was a sweet moment. Brady has taken these difficult weeks in stride....never complaining when Nate would get all the attention, or exceptions to many rules. When Nate would be having one of his (very common) fits of rage, Brady would often come and whisper some advice in my ear....it was usually an idea to calm Nate, to give Nate something that would make him happy. And often he and I would just exchange a little look with each other, smile, and nod knowingly. As yucky as those moments were, Brady could understand that Nate was just dealing with some tough stuff and responding in the only way that he could at the time. <br />
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And we've been surrounded by so many that love us all so much. It's hard, for the ones that love Nate so much, to see him dealing with such anger or fear. I know they all would do anything to make things easier for us in those times. It's maybe even harder to be the one who wants so badly to carry the burden, to ease the hurt, than to be the one in the trenches. We have been carried through by each prayer, each kind word. We are so thankful to each one of you! Thank you for loving us - and for loving Nate - especially when he didn't return the love.<br />
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We had another cardiology appointment today. And today, Nate behaved like a charming, sweet and kind little guy. Do you know what a relief that is, to be able to take that component of stress out of the equation? So thankful. As far as the appointment, no news is good news in this case. We're going to change up some of his meds and see how things go in the next two weeks. <br />
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One thing that I've learned of myself, as a heart mom, is that I find great satisfaction in the technical details. I don't like the 'layman's terms' in regards to Nate and his health. Give me details and use the real words. I suppose in the very beginning, the simpler terms were better, but now... bring it on. Side note: I had to inwardly chuckle during a particular rounds while in the PICU in Edmonton. The doc was taking his residents through quite late one night. After one of the residents presented Nate, the doc went on to do quite a intense grilling, questioning them, as to Nate's particular heart complexities, L-TGA in general, reasonings behind treatment, and implications of different parameters. Oh my - I just had to hold my breath as this conversation went on at the bedside. Truly, I was rooting for them to answer the questions correctly, the silence while waiting for any of them to answer was painful!! I just wanted to whisper under my breath and give them the answers they needed. Anyway, I like details, and I know some of my heart mama's might be interested as well, in some of the details, so here are a few:<br />
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<ul>
<li>Nate was on bypass for 123 minutes, an aortic clamp time of 72 minutes.</li>
<li>A 25mm On-X mechanical valve replaced the severely regurgitant left AV valve (Ebsteinoid like)</li>
<li>A Medtronic dual chamber epicardial pacemaker was implanted, with leads capped and were tucked away behind left rectus sheath (no generator implanted yet).</li>
<li>The VSD that was closed was the diameter of our surgeon's pinky....how's that for detail?!? Lol, it's the best info I got!!</li>
</ul>
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<br />Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-86275630001547727852013-06-08T18:19:00.001-05:002013-06-08T19:26:46.706-05:00My Big Ol' BroSince you only turn 40 once in your life, I thought this would be the best time to share this little gem with my big brother - who turns 40 today!<br />
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My sister came across this note recently. It was written by me, to my brother Kerry. She found it tucked away in one of the Encyclopedias that we had at home growing up. Judging by the content and my reference to 'Johnny' (my brother's boss - AKA Johnny Buhler - for a short time after Grade 12, before Kerry moved on to big things!!) this note would have been written somewhere around 1991.<br />
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I had a good laugh over it! Although everything in it remains true.<br />
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<span class="Apple-style-span" style="font-size: large;">Happy Birthday Kerry!!!</span></div>
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In case you can't read it, here it is:<br />
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<blockquote class="tr_bq">
Kerry, </blockquote>
<blockquote class="tr_bq">
Just a little note to say 'Hi'! Hope you are having a great day (don't give Johnny too much trouble!). Just wanted to say that I really love you and appreciate all that you do for me, even though I don't show it all the time.<br />
I'm praying for you and remember that Jesus really loves ya and is looking out for you! </blockquote>
<blockquote class="tr_bq">
Love,<br />
Carole </blockquote>
<blockquote class="tr_bq">
P.S. I made these cookies specially for you! Enjoy them and eat the whole batch if you want! I'm on a "diet"!</blockquote>
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Love you, Kerry!!<br />
<br />
<br />Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-3241574088119626692013-05-12T14:23:00.003-05:002013-05-12T14:23:53.537-05:00Fierce LoveMother's Day - 2013<br />
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Mother's Day is celebrated in two different ways. The one way that I'm most used to celebrating is how I've spent the last 35 years doing: honouring MY mom! That will never change. I love my mom and am so grateful for each way she shows her love to me, her child. She loves each one of her children so dearly, that much is clear! So whether it is shown through her words, prayers and encouragement, or her desire that we zip up our jacket and for sure that we cover our ears when it's cold out...it's all done in love. And we love her so dearly!<br />
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Then, the newer type of celebrating Mother's Day began 7 years ago, when I first became a mom.<br />
My thoughts and feelings about Mother's Day this year are a little bit different than other years. There are several reasons....mostly stemming from the intense time of 'mothering' I am in right now.<br />
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If there is one thing that has been going through my mind the last few days, it is this:<br />
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Being a mom hurts.<br />
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Now before you jump to conclusions or opinions, hear me out.<br />
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This love, the love that a mom inherently acquires the moment she becomes a mom, and the love that continues to grow exponentially through each 'mothering moment'.....this love becomes fierce.<br />
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Fierce love.<br />
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And anytime you allow yourself to love so fully, you open up and expose your own heart to the hurt that can come along with it.<br />
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In my moments, I have been hurting for the pain Nate has been in. For every confusing moment, every out-of-his-control moment, every physically painful moment.<br />
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This fierce mothering love desires.... yes, longs to take any pain and hurt from your child. And when we can't - it hurts.<br />
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And when you become one of the only people your child reveals their inner turmoil and anger to....that's when this fierce love needs to be the strongest. In many ways, I'm so thankful that Nate is able to express his 5 year old emotions to me, in his own way....even if it isn't positive. He needs his voice to be heard in all of this. And for now, he needs to feel safe, protected and loved.<br />
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And in the moments where he can forget about all the yuckiness of the last while; when he shows the little parts of Nate that we know - the laughter, the twinkling eyes, the silly and goofy little boy who hums The Imperial March while building Lego....in those moments, this momma's heart breathes a sweet breath, and thanks Jesus for the gift of being able to love. <br />
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To love. Fiercely.<br />
<br />Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-40293318672684790742013-05-08T00:25:00.000-05:002013-05-08T00:25:00.569-05:00Sweet surprises.Isn't it just like our God to send us little surprises to brighten our day! We've been talking about Kingdom Moments in church recently - and we've had a few of them!!<br />
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Just one example: After a bit of a rough morning (after Don had left for work) getting Nate's meds in and doing his finger poke, and getting him happy - or at least compliant enough - to head to Brady's school at 10:30 for their Spring Concert, Don called me after lunch and gave me a little patch of God light for the day. <br />
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An envelope, addressed to us, was sent to Don's work. In it was a card with beautiful words that touched us both. Someone that we don't even know, but is a friend of <i>our</i> friend (that's you, Shawna!) had heard about Nate and was following along on our journey through this blog. <br />
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In the card were also instructions to use the gift they sent to go out for a meal, and treat Brady and Nate to special treat. When I told Nate about this person, whom we didn't even know, but knew all about him and his operation.....and wanted to do something special for our family - and that HE could pick the restaurant for supper, you should have seen his little face. His eyes got big and looked at me excitedly, and yet he was trying SO hard not let his mouth turn into a smile. He didn't succeed - and soon that cute little smile broke through his lips. I told him that he could tell Brady about the special surprise and he did that with pride and excitement. He picked his favourite Winkler restaurant - Twisters!<br />
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So, to the dear one, who made my boys day today, I thank you!!!<br />
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Tomorrow we head back to Winnipeg to the heart clinic. It seems like we were just there, but it's been a week already. He still had some fluid around his heart last week, and hopefully the echo will show that it's been resolved. They'll also do blood work after the echo, and get our INR machine calibrated to the lab's INR results (please pray they get enough blood this time). His INR numbers have been a bouncing around a bit. From too low at 1.9 late last week, to too high at 5.0 on Sunday. The sweet spot is 2.5-3.5. But I suppose this is to be expected at the start, especially with the sporadic diet he had at the beginning, which has been increasing (changing the absorption of the warfarin) to getting a method of having him ingest the whole dose (my kitchen counter is turning into a drug lab as I crush and mix pills and try to hide them in different drinks, etc.!)<br />
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Thanks again for your love and kindness - for your prayers, emails, meals and hugs!!<br />
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Love you all!<br />
<br />
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com0tag:blogger.com,1999:blog-9007308646939824365.post-14219695086484337352013-05-02T22:26:00.001-05:002013-05-02T23:23:02.270-05:00Life at home....It's hard to summarize and explain how life is back home. If you've ever been in a situation, even remotely close to this, you'll know what I mean. Yes, there is a huge relief to be home. To be together as a family, surrounded by our family and friends, in the place we are most comfortable...home. And yet, I'll be honest, flying home that day, my mind and heart were in conflict. It's a little scary being away from our doctors and specialists, for one. But probably, a bigger issue I was battling was what life was going to look like for us now. Like I said before, this wasn't a fix-it-and-forget-it type of surgery. To be sure, we did this to preserve and prolong the function of Nate's heart, and we will see the benefits of a less stressed (left sided) right ventricle, but there are many more and many new cautions that are a part of our life now. <br />
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This immediate time after surgery likely would put anyone on edge....watching for any unusual or unexpected signs and symptoms. So when Nate started throwing up in the middle of the night yesterday, you can bet I was alarmed. Thankfully no fever accompanied this episode, and the nausea did not continue, so today was a 'movie and games on the sofa' kind of day.<br />
<br />
We're still battling with two of his oral meds. I would love to say everything is just wonderful and Nate is completely cooperative, but since you're reading this, you probably want to know the real deal. It takes both Don and I to do these tough ones. It is done as calmly as a mother soothing her child and with gentle and encouraging words, but it takes both of us to restrain him. It's horrible to do, especially for this momma's heart. And the hardest and most frustrating part is the spitting. We've done a couple in which he didn't spit any out and there feels like such victory with those. However, it is entirely defeating when it does happen. Especially with the Coumadin (blood thinner). While we are still getting his INR levels up and stable, his dosage changes based on the finger prick test. So you can imagine the pressure we face: when he doesn't take the whole dose - resulting in lower INR levels - which results in increasing his Coumadin dose - which really isn't accurate to what he may/may not need. <br />
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There have been wonderful glimpses of sunshine in our days though, too. Hearing him laugh, seeing a smile, especially when he is trying very hard not to! Even hearing the boys fight over their lego....it's a good and normal sound. Then there are the ways that we are being blessed by friends and family, as they show the love of Jesus to us. <br />
<br />
The local church that some dear friends and family go to, surprised Nate with a special gift. Their Sunday School kids had been collecting money to make build-a-bears, and then donate them to a hospital for the kids there. Since the church had been praying for Nate, they chose to present a specially made (by a special friend) Jets bear to Nate. Even though Nate tried to be very stoic as he opened it, there was no denying that little smile that peeked through. Thank you to Bethel Church for their prayers and love!! And that's what it's all about, isn't it. Showing the love of Jesus to others. Being his hands and feet. Being the encourager, the listener, offering a hug. Being surrounded by people like this has added strength to our own. To my own dear family and friends and church family thank you for being part of Nate's story and our family's journey!!<br />
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-47164600329290230262013-04-30T23:15:00.001-05:002013-04-30T23:16:27.594-05:00Happy Birthday Braveheart. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqo79lhbFHPC0XCARksZNmkt2wQlaeTQKGujaYIpGI_rW5d2kXpzFxfbAKn4d34FtGuXk8oUu-gwhfYpUqmu2QDHCVeV2bqBZtPDxMO4Tgj-bcZKyuFN6ZPKIZOGxjwlTgJLB2biNN8Sk/s640/blogger-image--1803997345.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqo79lhbFHPC0XCARksZNmkt2wQlaeTQKGujaYIpGI_rW5d2kXpzFxfbAKn4d34FtGuXk8oUu-gwhfYpUqmu2QDHCVeV2bqBZtPDxMO4Tgj-bcZKyuFN6ZPKIZOGxjwlTgJLB2biNN8Sk/s640/blogger-image--1803997345.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidtUfO7FD1msekhDJdDdiW5PCQrU21RWNeEnqVagkTD4VMfteJwAxNotRDCctJqHf9PO09Eyl3Bi6CmhD20U5tZT4qG3_qQtDuEiMyQs_sRbKLRD2YWyUXK-GWUu87YvALx4AKhbGKZK4/s640/blogger-image--898398413.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidtUfO7FD1msekhDJdDdiW5PCQrU21RWNeEnqVagkTD4VMfteJwAxNotRDCctJqHf9PO09Eyl3Bi6CmhD20U5tZT4qG3_qQtDuEiMyQs_sRbKLRD2YWyUXK-GWUu87YvALx4AKhbGKZK4/s640/blogger-image--898398413.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwDOt0M1sYGAyD51mRN3VtoxNSRjF0kjhWsi8dxG5erN9eFn0S0sT6e1aFWCF8o1uIUED8whmuPuHaMX4Ks_GRWy1bH5PDrMpKIB8TcybBMfHqCUpEHPKJD_mYHlS2BjDsUKRrph3UYs/s640/blogger-image--949889801.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjXwDOt0M1sYGAyD51mRN3VtoxNSRjF0kjhWsi8dxG5erN9eFn0S0sT6e1aFWCF8o1uIUED8whmuPuHaMX4Ks_GRWy1bH5PDrMpKIB8TcybBMfHqCUpEHPKJD_mYHlS2BjDsUKRrph3UYs/s640/blogger-image--949889801.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAVUS6OFbg_IjSltiSMRe3AECwGRJg4qHQkGCJG-tETj0Lnus09H7hi3vAdIvH8-_SEyChaT5KEVis2z_H8SD8vr_YduA2LsJvJdE66kiVQQ2-x6BvA0uiRGc43MWPgblWJ60-FX6QSkc/s640/blogger-image-390928293.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAVUS6OFbg_IjSltiSMRe3AECwGRJg4qHQkGCJG-tETj0Lnus09H7hi3vAdIvH8-_SEyChaT5KEVis2z_H8SD8vr_YduA2LsJvJdE66kiVQQ2-x6BvA0uiRGc43MWPgblWJ60-FX6QSkc/s640/blogger-image-390928293.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYOx_ovI1ODnTerIK_2qJBo7SRIgYNvIOHO5cYEhrbPnPpOlcz4nexB47pBg1HRJkR1rnRPxwPLNTqaFOFcq3q1tCkGRYyNxQ8pFxj3TdTUMH72wBwaQphXIlOrK4FdyFyqV5t7Fnakts/s640/blogger-image-1123045969.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgYOx_ovI1ODnTerIK_2qJBo7SRIgYNvIOHO5cYEhrbPnPpOlcz4nexB47pBg1HRJkR1rnRPxwPLNTqaFOFcq3q1tCkGRYyNxQ8pFxj3TdTUMH72wBwaQphXIlOrK4FdyFyqV5t7Fnakts/s640/blogger-image-1123045969.jpg" /></a></div>Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com0tag:blogger.com,1999:blog-9007308646939824365.post-78296967773021784962013-04-30T00:07:00.001-05:002013-04-30T00:07:17.449-05:00Home.Home, oh sweet home!<br />
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More to come, but for now, so thankful. For a safe flight home, a great ride back to Winkler with a dear sister and brother in law. A kitchen full of food and baking- thanks mom and dear sister. And awaiting the early morning rising of dear Brady and anticipating hugs and the exciting reunion of brothers. They're sleeping in their room together, and don't even know it yet. <br />
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What a journey, what a road ahead. To God be the glory!<br />
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com5tag:blogger.com,1999:blog-9007308646939824365.post-33195180562022988942013-04-29T16:21:00.001-05:002013-04-29T16:21:23.733-05:00Day 8 - packing upIt's day 8 of Nate's recovery and day 12 of our time here in Edmonton.....and it's time to say goodbye. The thoughts and feelings swirling around are overwhelming, maybe a 2 hr flight will help as I process things:)<br />
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Please pray for safety as we travel and especially for Nate. I'm nervous. Just about potential nosebleeds in the air, how he'll be with everything, and the fact that I do need to give him meds in the airport. He was complaining of pain in his chest an hour ago, so he's got some Tylenol in him now. Anyway, more later...<br />
Brady: mommy, daddy and Nate are on our way to hyperspace back home to you!!! We all can't wait to see you!!!<br />
Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2tag:blogger.com,1999:blog-9007308646939824365.post-81601007552041251242013-04-29T10:45:00.001-05:002013-04-29T10:46:44.521-05:00Day 8 - Snowy morning in EdmontonINR levels are up this morning, very good news. Still waiting on an echo and the thrombosis team to figure out what the plan is. 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The hope is that tomorrow morning's INR level will have increased enough to discontinue the enox injections, and continue on with Coumadin only as the anticoagulant. Nate would be VERY pleased to not have those needles twice a day any longer ( although I know there are some pretty cool kids who do these injections and they should get gold medals!!). Anyway, if thrombosis is good with his numbers, his blood work is good and the morning echo shows good function, no fluid, etc.......we could be flying home tomorrow, skipping the whole transfer to Winnipeg and just discharging directly to home. They figured that since there was no way we'd be transferring today, the best idea would be to see this through to the end here. I feel good about this idea. We will still need to be tweaking all of his meds once we get home, but a drive in to Winnipeg sounds a lot better than staying here. And the sooner we get home, the sooner we can get meds that Nate will take without issues. <br />
Not being hooked up for his vitals at home will feel a little unnerving. There is comfort in taking a peek to check his o2 sats, heart rate and rhythms...but I know a pretty amazing Physician who has been in control since the very beginning. So to worry (although normal!) is not what I need to do. Giving up that fear and worry is something that we all need to do! <br />
Nate is calling me over so it's time to snuggle with my little man. And as Brady said today, we hope to 'hyperspace back home' tomorrow ! <br />
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2tag:blogger.com,1999:blog-9007308646939824365.post-57592813912978483112013-04-28T13:33:00.001-05:002013-04-28T13:33:46.555-05:00Day 7 - morning updateWe won't be going anywhere today. Nate's blood pressure was a little low throughout the night. He's pretty dry from extra diuretics that he's on. In the morning, he said he his head hurt. A little while later, (while I was giving him his Enox injection) his nose started to bleed. After that was under control and done, we started with his morning meds. As per usual, this continues to be a high stress thing for him, with a lot of fighting it. Of course, his nose started to bleed again. It took over half an hour to get his 3 medicines in. We gave him a little time to relax and snuggle, but then it was time to do the finger poke to check his INR. It would have been great if that could have been accomplished in one poke, but for a coupe different reasons (not enough of a blood drop, etc), I had to repeat this on four total fingers. Horrible mom. But we got it, and he settled down. The good news is his INR is finally starting to increase ( for those who are into it, it's up from 1.1 yesterday, to 1.6 today). We're looking for numbers between 2.5 -3.5. We'll do full blood work again today at noon (with the same nurse that was able to draw blood from him yesterday). <br />
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So, given today's events so far, we're not stable enough to go. And Winnipeg doesn't want us until we are stable, too. Mixed feelings of course. I could almost imagine giving Brady a hug this evening. But I'll settle for another FaceTime. Nate, too, is DONE with everything here. He's so tired of it all and just doesn't want anything here anymore. He has a list of a few things which are okay (blood pressure, temperature, listening, breathing exercises, lol!) but pretty much everything else is hard. The meds continue to be so hard, and he just doesn't understand why Dean's (the old name of our pharmacy back home - the pharmacist's first name, and what we call his medicine....all we say is: its time for Deans! and he comes running) can't be here. He laments continually. When I told them there is only one Dean, he says he wants there to be two Dean's. So that's a compliment in the highest form for Winkler Pharmacy. Thank you for always reducing Nate's meds down to 1 ml doses, and for the nice, tasty flavour. <br />
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Will update more as we find out more. We have felt God's hand so near to us in all these times. We have to do hard things, but like Nates Sunday School lesson said a while back, "God Helps Us Do Hard Things". May you feel blessed today. Enjoy your Sunday and time with family and friends today!Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com0tag:blogger.com,1999:blog-9007308646939824365.post-21839804101697500482013-04-27T16:43:00.001-05:002013-04-27T16:43:46.735-05:00Day 6 - making plansWell, things are a little uncertain right now. After rounds, one of the cardiologists came it to talk. Nate's INR levels are not coming up yet. They feel he could be 4-5 days away from regulating, and achieving sufficient blood protection with the Coumadin. That being said, they really need us out of the hospital. It's full and there are more coming - so they need the space. They are considering transferring us to Children's Hospital in Winnipeg, and stay there until we are ready for discharge. They won't send us without our consent, but are feeling like this would be a good option, as long as there are no other issues that come up, or are seen after reading his echo, etc. At this point, they don't know whether he would require a medical transport, or if we'd be able to fly commercially. <br />
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That's where things are at right now. If we were to transport, it would be tomorrow. As of right now, it looks like Children's will have a bed available tomorrow afternoon. Please pray that the right decision will be made and it would be safe for Nate, no matter what the decision. Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-83075924437286284642013-04-27T01:36:00.001-05:002013-04-27T01:36:09.708-05:00Day 5 - End of dayToday was a day that had a bunch of really good moments. Moments that were answers to prayers and some fun moments that weren't even expected.<br />
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As you saw from an earlier post, breakfast was eaten by the boy at The Stollery, in unit 4C2, Room: Chomper, Bed 2.<br />
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If that doesn't deserve a hallelujah, I'm not sure what does!! I was so thankful in those moments where one scoop of Corn Flakes turned into two, and then three.....all the way till six!!! And if that wasn't enough, a few minutes later, feeling like I was on a roll (okay, I knew I had nothing to do with it!) I asked if he wanted one of the Timbits we had been taunting him with all day yesterday. Well, I don't know if taunting is the right word. But what would you call it, if you took you child for walks around the hospital several times, and in the stroller's little snack holder in front of them, you place Fuzzy Peaches, Timbits, Pringles and Gummy Bears?!? Sure, we got a few looks from people as we walked by, most were probably aghast that these parents would feed their sick child all this junk in a hospital. Anyway, you get the idea! So after a day of no interest in any of that I offered him a Timbit, and guess what! He ate half of one!<br />
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Well, I guess those morsels were enough to fill him right up, as he didn't eat lunch. But later in the afternoon, when he saw some Hickory Sticks (his dad's favorite) in a vending machine, we got some and he snacked on a few.<br />
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Okay, that's a lot of details about food. But I'm just so glad that there is some desire to eat, under his own parameters. For now that's fine.<br />
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Other activities of the day were a bit of a surprise to us. The Alberta chapter of the Children's Wish Foundation had an event for the kids at The Stollery. Here are a couple of pictures from that event. Even though this accounted for less than 15 minutes of our day, we took a lot of pictures, because it was likely the most unexpected and appreciated display of love for the kids who have to do hard things.<br />
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It started with a lightsaber. Well at least for the boys. And if you know my Nate, you'll know that if you offer him a lightsaber, you have a friend for life! From there, the kids had a choice of two Build-a Bear dogs, and their choice of an outfit for their dog. When Nate saw the army outfit he knew what to pick. The name he picked is General Grievous, lol!<br />
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From there, we met Spider Man (Tinkerbell and Cinderalla were available too). We went on to decorate a 'wish box' and that's when Nate decided he was about done. We did frost one cupcake before we left. There were many other activities going on. They had nail art for the girls, a dress up photo booth, facepainting and massages for the parents. I was just so impressed by the love they showed for the kids, and how special they made our little heros feel. What a fantastic organization honoring the little fighters we love so much!<br />
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Okay - minor interruption. I just spent about an hour with the rest of this update...there was some really good stuff in there!! But in transferring from my ipad to macbook.....POOF! It's all gone. Sad? Yes!</div>
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But knowing I'll be getting up in 4 hours, I really can't finish it now. So here is the summary:</div>
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Medically:</div>
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Introducing back ibuprofen and a PRN for morphine for 24hrs. Want to give Nate the best chance to have no pain to give him the ability to heal, get mobile, and effectively cough and clear his lungs. His O2 sats were still dropping during the night yesterday into the 80's, so got him back on oxygen for the night. Expecting it to be better tonight.</div>
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INR (blood clotting) levels are not increasing yet. I gave him my first finger poke to check levels, and later this evening gave him my first injection of a blood thinner drug that is done twice per day, until his levels regulate and we can continue on the oral medication only. He still cried and pleaded just the same, but after calming down, grabbed my finger and held on as we sat together for a quiet snuggle.</div>
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He still loves me.</div>
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He will have his regular blood work done tomorrow. Please pray!</div>
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Meds: Had a tough day of his continued resistance and spitting out the medicine. Found a trick online, that worked better at the 9pm doses. A freezie to get the mouth super cold, and then placing a finger between his cheek and teeth, and dispensing the medicine in the area at the back.</div>
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Activity: He is walking a little farther, with someone helping to stabilize him. He tires out quickly, but today was an improvement from yesterday.</div>
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We had a wonderful surprise visitor today. We met a beautiful 'heart family' when we were in Edmonton in January for the MRI, and was so glad to be able to reconnect today! We missed you M!</div>
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Nate is beginning to emerge from the post-surgery darkness, and as he does, I can see that his little mind is confused at times with what happened, and why things are continuing to happen to him. And the life long changes that will now be a part of his world are something that I pray he will accept as he grows up with it. I wish we were leaving the hospital with a "fixed it and forget about it" scenario, but we're not. It makes me think that the transition to back home will have it's challenges, as it's not just going back home as it was before. It's a new lifestyle and changes in routine and some kinda uncomfortable things that will need to be adjusted to, and eventually be a part of the everyday.</div>
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Okay, I'm still really bummed about my lost words....seriously! But time to put that aside, and get some sleep! Thanks for being pumped about Nate's walking video! I've got one more little audio clip that I want to share. You'll have to turn your volume way up on your computer for it to work. Something kinda cool and unique about Nate's new mechanical valve, is that you can actually hear it working! These is a fainy 'tick tick' sound every times it opens and closes. I just used the iphone 'memo' recording function to get this, so there are some ambient hospital sounds in the background. But thought you might enjoy!</div>
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-27927006292727790232013-04-26T18:44:00.004-05:002013-04-26T18:44:42.277-05:00Day 5 - Afternoon walk<iframe width="560" height="315" src="http://www.youtube.com/embed/0L-JPMaPMls" frameborder="0" allowfullscreen></iframe>Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com1tag:blogger.com,1999:blog-9007308646939824365.post-63143863090890287862013-04-26T09:02:00.001-05:002013-04-26T09:12:18.316-05:00Day 5 - breakfast....yes, it's update worthy!When the breakfast tray came today, I showed Nate the box of cornflakes. He nodded. I got it ready, and went on to eat at least 6-7 spoonfuls. Now that's enough to make my day! <br />
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I'm thanking God for this. Thank you for praying for us, and the eating part. One step at a time. And this is one very good step!!<br />
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Next step, 8am medicines!<br />
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Thank you Mr. Cornelius Rooster, lol!!<br />
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I started the day with optimism and hope, but after a short time, it became apparent that we still had a very stubborn and unagreeable little boy. During the night, he'd had some high heart rates in the 160's, so they increased his oxygen, thinking it was due to his low hemoglobin. He still refused any food, but did drink, and thanks to his IV that was running all night, was definitely on the positive side of wet. During rounds, I heard the cardiologist say that he needs to get mobilized and he needs to eat. Umm....yes, I'd love that too. They want to get us out of here by late this weekend, or early next week. <br />
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Another issue that he's having is his refusal of oral medicines. Most all of his meds have now changed from IV to oral. So, his latest trick is to spit it out as we're shooting it in his mouth. Bad behavior is one thing, but bad behavior that interferes with the drugs that his body needs and determines his wellness is quite another. These meds are coming every couple of hours, the way that they are staggered, and there are usually 2-3 at a time, so it's quite a battle.<br />
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Mid morning, before getting his blood transfusion was blood work time. Now, he's already got the reputation of being super hard to get anything on. They called up the best people they know, and even they tried and failed. At this point there are about 5-6 nurses and techs surrounding the bed, plus Don and I, and Nate is really struggling. Crying a lot, asking 'Mommy, can't you do it?", "Why does everything they do hurt?", etc. The final approach was to go off of a vein in his foot. They did get some, but not as much as the wanted. And in that process of being pinned down, and waiting for the very slow blood to come in, all of Nate's exertion caused one of his chest tubes wounds to spring a leak and bleed through all the dressings (and remember, he's now on blood thinners). <br />
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Yikes! By the time that was all cleaned up, it was time for his blood transfusion. During that time, we started on our Warfarin/Coumadin and testing education. Definitely a lot to take in and process. Especially after being kind of 'done' from the morning. After being infused, Nate perked up and was ready to get out of the room again. He took his first steps....very slow and shaky, and only with me totally supporting him, but he walked several feet. As the day and evening went on, we practiced his walking a few more times. The longest stretch was about 10 feet, which felt like a real improvement. He also ate 2 Fuzzy Peaches. Victory!!!<br />
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At supper he had one bite of a hamburger, and at bedtime, half a dish of applesauce. Very small steps, but grateful to at least have small steps. <br />
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After 9pm, the cardiologist on the floor asked Nate to go for another chest x-ray. Both lungs are slightly collapsed in the lower lobes, which can often happen after surgery, and usually will improve with getting up and mobile. However, after listening tonight, (and she just loved listening to his heart...loved the sound of his valve!!) she wanted to rule out the possibility of pneumothorax. So we did the x-ray shortly after, and it showed the issues she'd expected (pleural effusion and the collapsed areas), but not pneumothorax. Thanking God that we didn't have to add that to our plate.<br />
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After today, I thought about how, as Nate's mom, I would do anything to take this constant suffering away from him. And I would, in a heart beat. But I also know that if I did that, and had to put up with everything that he has had to this week, well, I'm not sure I'd be the most gracious or mild mannered person either. Actually, I know I wouldn't. I'd be a down right sour puss.<br />
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Anyway, progress today, sometimes only baby steps, but they are steps. And then a dose of sweet, happy reality when we FaceTimed with my parents and Brady. Glad for the two brothers to be able to see each other.<br />
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Thank you to each one of you for each prayer, email of encouragement and support!!! So thankful we're not in this alone. Tomorrow is another busy day with blood work, getting educated on more blood thinner information, and learning not only how to test Nate's INR levels at home (with a prick to the finger - dear Nate, you just have no idea what's coming yet), but also be taught how to administer the injection form of Coumadin, in case we ever need to switch over to that format instead of the oral meds. Plus, Discharge will come to pay us a visit, since they don't know when we'll be going home, but in case it's on the weekend, they need to get things lined up tomorrow.<br />
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That's all for now!<br />
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<br />Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com0tag:blogger.com,1999:blog-9007308646939824365.post-25166386977717035542013-04-24T19:48:00.001-05:002013-04-24T20:29:38.045-05:00Day 3Nate had his fair share of tasks before 9am today. Surgical rounds were at 6:30am. We got the go ahead to remove the two remaining chest tubes and remove the temporary pacing wires, that were placed during surgery. That wasn't fun, but happy to have them gone. We had to lay low for 4hrs after those procedures. Chest X-ray was done after lunch and bloodwork (through his IV which normally isn't allowed to be done on this ward - but they did for Nate due to the 'issues '. An echo was also done this afternoon. <br />
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Nate was a boy with very few words today. He refused to eat, but did drink as much as we could get into him, which wasn't a lot. As a result, he had a period of increased heart rate and respirations while sleeping, even though he had a morphine dose and was relaxed and sleeping. It is still a bit higher than they'd like. There could be several issues going on, but will treat it as dehydration for now. Also, his last blood work showed low hemoglobin, so he will get blood tomorrow, as it was too late to do it on the ward today. The rest of his bloodwork was very good. <br />
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We also started his oral bloodthinners today in addition to the injections. This oral med is what will continue when we get home. Thankful it won't be the injections. He'll already be getting frequent pokes by me at home to check his INR level or blood clotting factor. They need this med to be in his system and determine the right dose for several days before we can come home. And really, a person should be on a regular food diet before starting. <br />
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So, prayer requests for today is that his appetite will return quickly. Like 'now' quick! He needs food inside today. That new meds and old meds would stabilize to the right balance. For a good night. for a safe transfusion tomorrow. For his strength to continue to return and pain to diminish. For his happy self to return and to verbalize himself. For his heart to recover and be strong. That he would be able to play and enjoy some " being a kid time " here at the play area. Those are just a few on my mind right now. <br />
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Nate wasn't too photogenic today, so no pics now. But expecting a new and improved Nate tomorrow!!Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2tag:blogger.com,1999:blog-9007308646939824365.post-71342144524787539542013-04-23T23:56:00.001-05:002013-04-23T23:56:08.917-05:00End of day 2It was a day of changes on a lot of ways. After lunch we moved up to the cardiac ward. Before that could happen, several lines had to be removed and certain drugs weaned off. We also started the anticoagulant regime that will become the new normal for supporting the mechanical valve in Nate's heart. I'm not sure what the at home drug will be, but here at the hospital, it comes on the form of an injection. Poor, sweet Nate. More ouches. <br />
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He had a tough day with so many of the physical things happening to him were a bit painful and hard. From removing dressings and lines, to now having to take many meds orally instead of through his line (and they sure don't make them the way our amazing pharmacy back home does...if they did it sure wouldn't be an issue., but these just taste bad,) and then there was the attempted blood draw (again because his arterial line had to come out). Two techs BOTH tried ( and by tried, I mean dug around) on BOTH arms to get a vein, but could not. That was a lot of owies for Nate and was hard to see. He is struggling with pain from his chest tube, as is to be very expected. I'm praying that it can come out tomorrow. So far he has an aversion to most every food, but at least is drinking. Since the continuous morphine was stopped in ICU, the Tylenol and Advil aren't cutting the pain, as he's had two doses of morphine since coming up here this afternoon. <br />
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So, a tough day, but a day that you have to get through to get to the healing that is coming. And we are assured of that. It's just the hardest thing, though, to see your little boy suffer in these ways. And I just long for my Nate to come back to the silly, goofy and spontaneous hugging little boy that I know. <br />
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It's crazy though. It's only been two days. All things considered, he is making good progress. And I'm thankful for the many, many answers to prayer already. Here's one that I bet you didn't know about: for our 'previous extended experience' at The Stollery when Nate was 2, I realized how important it was to have a room with a view. Once our miserably long stay in the ICU and ICE units were done and we got to the cardiac ward, our room had a view to the outside. There were construction zones, a train transit system and busy roads to look at. It was amazing what that will do for a young boy who loves those things. So, it was definitely a prayer of mine that we'd have a room that didn't just look into the hospitals atrium, but one would give us all the fun city life and action. Well, we got it. And as soon as Nate can actually get out of bed, I'm sure he'll be enjoying the view, too!!<br />
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Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2tag:blogger.com,1999:blog-9007308646939824365.post-39254250331287275762013-04-23T11:15:00.001-05:002013-04-23T11:30:45.385-05:00Day 2Just got kicked out of the icu because of a procedure they are doing, so I've got a minute. I stayed with Nate last night and he did pretty good. His fever slowly came down and it is normal now. Keeping up with Advil and Tylenol to control it. This morning we have been weaning off other drugs and will get rid of a few lines yet. They would like to move him up to the cardiac ward after lunch. Nate is growing restless, but happier since 5am since he could begin some slow apple juice and had a freezie recently. They want to do an echo before leaving icu also. Chest X-ray this am looked good!<br />
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Pictures from this morning are of our day nurse, Andrew; and our night nurse Jeck. Awesome guys to have around! And then a pic of the loooong awaited freezie. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-qj_GanPoOqwVMC4A7ydlhw34HGzJR9Va_6nhrHcxfwIPWCgggmVg4ODrwGJtZIyqPbfRxC18lM7vuHAfc_HvTIqdNodDyBwz1Hsyz76vuLzLF1DxWXuasq7TFWRYldM3GXVmCZZ-nUo/s640/blogger-image-1317176421.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi-qj_GanPoOqwVMC4A7ydlhw34HGzJR9Va_6nhrHcxfwIPWCgggmVg4ODrwGJtZIyqPbfRxC18lM7vuHAfc_HvTIqdNodDyBwz1Hsyz76vuLzLF1DxWXuasq7TFWRYldM3GXVmCZZ-nUo/s640/blogger-image-1317176421.jpg" /></a></div> <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGyWtof2m2RoFd9EOpZUCBKrZaQGigk5e3D4Cv9bY8rC8UUPu2BnUJ6KIAlKuvtmh1six3LWtRAUlD1CaM-jRtfrsmkPMr5XoEAziy6UhdkAqW67g1oiGRXcHZJ8WaZ80gczrOAdO8elA/s640/blogger-image--172559702.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGyWtof2m2RoFd9EOpZUCBKrZaQGigk5e3D4Cv9bY8rC8UUPu2BnUJ6KIAlKuvtmh1six3LWtRAUlD1CaM-jRtfrsmkPMr5XoEAziy6UhdkAqW67g1oiGRXcHZJ8WaZ80gczrOAdO8elA/s640/blogger-image--172559702.jpg" /></a></div>Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com0tag:blogger.com,1999:blog-9007308646939824365.post-39096654716987287772013-04-22T22:41:00.001-05:002013-04-22T22:41:24.361-05:00End (almost) of Day 1There are a lot of things that are going really well!! In fact, you only have to think about all the things that could go wrong and you realize how many things are going well!<br />
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Right now, Nate is still on a cocktail is drugs, but is pretty stable. One concern is the fever that he is running. It went up to 40.1, but now, after dosing Tylenol and Advil it is coming down. It is unusual for it to climb that high so soon post surgery. They are running cultures to look into this. Another issue is that he is showing a slight arrhythmia. Still waiting to see if it will sort itself out. He is wired to a temporary pacer if needed. He was extubated at 6:30 and had been trying to mouth the words ' I am thirsty' with the tube still in. In the last hour he has been able to suck on a sponge, and after rounds that just happened he can start on some ice chips. They will try to lower his epinephrine overnight. <br />
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I am going to hang out here for tonight. Hopeful about great improvements in the next day. So many answers to prayer today. So overwhelmed by all of your support and your prayers. Thank you all so much. And thank you Jesus for the great things. He is doing here. <br />
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One pic taken about an hour ago. <br />
<br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAMJV4xU1k37fG44NUiWa-SNPMapv_bxX26c4Qkq4oup-1EL3eafV6zOtUB3XkWsx6iEO2R-1Wc4FcG5jNUkY9p5QUoWHPzpm9Tx2ugvgN7khDWi4ZWulYJwVbF4VKvsVA1CtLRxzn35Q/s640/blogger-image--141616979.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjAMJV4xU1k37fG44NUiWa-SNPMapv_bxX26c4Qkq4oup-1EL3eafV6zOtUB3XkWsx6iEO2R-1Wc4FcG5jNUkY9p5QUoWHPzpm9Tx2ugvgN7khDWi4ZWulYJwVbF4VKvsVA1CtLRxzn35Q/s640/blogger-image--141616979.jpg" /></a></div>Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2tag:blogger.com,1999:blog-9007308646939824365.post-42760413260188753572013-04-22T16:53:00.001-05:002013-04-22T16:53:31.553-05:00In ICUIn ICU now. Keeping him intubated and sedated. Has a fever. <br/><br/><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQZLr2CqbxfGoAGhabwhgtNTaBFhPZiudcqZfW2K08Kd8YBmFUEompeTEB3xplRO2qABGpp_jKWdO7WCAZzx9W5Zx4xtVMh5Xe2x9USjTsuwm1GxZ9OQ-h-Adrc9WkpKpnH7htHs7LLqI/s640/blogger-image--2100268588.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQZLr2CqbxfGoAGhabwhgtNTaBFhPZiudcqZfW2K08Kd8YBmFUEompeTEB3xplRO2qABGpp_jKWdO7WCAZzx9W5Zx4xtVMh5Xe2x9USjTsuwm1GxZ9OQ-h-Adrc9WkpKpnH7htHs7LLqI/s640/blogger-image--2100268588.jpg" /></a></div>Carole Hieberthttp://www.blogger.com/profile/13068991767990336530noreply@blogger.com2