tag:blogger.com,1999:blog-62177169831653303852023-11-16T05:58:59.531-06:00Blessed Life"Blessed is he who expects nothing, for he shall never be disappointed"Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.comBlogger431125tag:blogger.com,1999:blog-6217716983165330385.post-28106125163276556492017-06-27T22:44:00.001-05:002017-06-27T22:55:57.861-05:00Caysen Year Four: A Letter <div style="font-size: 18px; line-height: 21.600000381469727px;">
<span style="line-height: 21.600000381469727px;">What a year or two it has been! Looking back on just the change from last year’s birthday to this year, we are so </span><span style="line-height: 21.600000381469727px;">so</span><span style="line-height: 21.600000381469727px;"> incredibly blessed. Last year at this time you had been in the hospital for almost two months. You still had a swollen belly, were puffy yet scrawny and malnourished looking, </span><span style="line-height: 21.600000381469727px;">and you</span><span style="line-height: 21.600000381469727px;"> couldn’t make it through the day without albumin – because the dreaded Protein Losing </span><span style="line-height: 21.600000381469727px;">Enteropathy</span><span style="line-height: 21.600000381469727px;"> had crept in and was taking its toll. </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">On Mother’s Day in 2016 you were sick, and we ended up going to the hospital. We didn’t realize that you wouldn’t officially discharge until November, and with a new four chambered heart. </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">To think all you have been through in your four years makes me so incredibly proud of you. Just when I thought you would never eat by mouth, you decided you would. When I wasn’t sure about your motor skills, you proved me wrong. It’s a reoccurring theme, when I’m unsure of your resilience; you prove to me that you have it!</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">This past year brought chest tube after chest tube, poke after poke, 10 different fractures in your little body, bags and bags of TPN or IV Nutrition, a medical flight, 2 different children’s hospitals (with staff at both that we dearly love), and most importantly that beautiful new 4 chambered heart. </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">Last year at this time the future was so uncertain for you. Could you make it home with your native heart? How much longer did you have? What were our options? I find that this year, some of those questions are answered while some never will be. You could not make it at home with your native heart – but it served you well. Our hand was forced when we ran out of interventions and had to list you for transplant. As for the question as to how much longer you have? We don’t know. But if you think about it, no one knows. While you might have even less than the average person – we are still so grateful for each day and plan to live each to the fullest. We couldn’t be more thankful for your organ donor!</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><br></div>
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<span style="line-height: 21.600000381469727px;">Here is what you are up to now:</span></div>
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<span style="line-height: 21.600000381469727px;">You are walking better after over 6 months of consistent PT. In fact, you spent some time this past weekend “racing” your brother on his bike. Your run is the cutest thing </span><span style="line-height: 21.600000381469727px;">ever,</span><span style="line-height: 21.600000381469727px;"> you grin and laugh the entire time. I couldn’t help but notice your lack of blue lips, or the fact that you wanted to keep racing him. You couldn’t have done that before! You still show your weakness when it comes to climbing steps, but we are getting there!</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">You are wearing a size 4T shirt and usually 3T to 4T shorts. Your shoes are a size 6. You weigh in at about 33lbs. You love eating! Some of your favorites include chili, blackberries, chili cheese </span><span style="line-height: 21.600000381469727px;">fritos</span><span style="line-height: 21.600000381469727px;">, orange bell peppers, hot dogs, taco meat. You still have your G Tube that we put meds in, we push water to keep those kidneys happy, and we do some nighttime feeds.</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">Your sleep is still a mess. You don’t like to be alone, that’s for sure! You will often wake us up screaming for mom or dad, or we will wake up to you just climbing into our bed with your Pikachu or your </span><span style="line-height: 21.600000381469727px;">giraffie</span><span style="line-height: 21.600000381469727px;"> and your </span><span style="line-height: 21.600000381469727px;">blankie</span><span style="line-height: 21.600000381469727px;">. Some nights you sleep like a pro, others you won’t. You still nap during the </span><span style="line-height: 21.600000381469727px;">day,</span><span style="line-height: 21.600000381469727px;">usually an hour is good for you to go until about 10 or 11pm that night. You are definitely an early riser, often up by 7 unless you made it to our bed – where you sleep like a log.</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">Your favorite show is Paw Patrol, but you still enjoy your Bubble Guppies as well. You love watching the most random YouTube videos as well. You have an imagination like I haven’t seen before – you can pretend play like no other. </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">You always want to be like your brother or your Daddy. You had to go to the dentist recently where you insisted that you had a loose tooth, like your brother. You are always thinking of him – wanting to get him a toy or a piece of candy anytime that you do. You also enjoy being like your Daddy. You will look for your tools to “fix things” just like Dad. You even use your tools to “fix” me, cutting with your saw and repairing and then giving shots telling me “this won’t hurt”, and listening to my heart – “sounds good!” I think you’ve heard those things a time or two before.</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">Your dimple little smile seems to get all kinds of attention, and your Mohawk suits your personality. You started school this past year and you LOVED it, getting to take you r ‘</span><span style="line-height: 21.600000381469727px;">packpack</span><span style="line-height: 21.600000381469727px;">’ like brother and learning in the classroom setting. The independence suited </span><span style="line-height: 21.600000381469727px;">you,</span><span style="line-height: 21.600000381469727px;"> I’m interested to see how this next year of a full day Pre K goes for you! </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">You are down to handfuls of meds, most important being the </span><span style="line-height: 21.600000381469727px;">anti rejection</span><span style="line-height: 21.600000381469727px;"> meds that you will take every 12 hours, for the rest of your life. If you don’t take those about 12 hours apart your immune system becomes less suppressed and that can be dangerous for your foreign heart. We are still working on your bone density as well, and will continue with infusions.</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">Overall, we are so incredibly blessed to be where we are today. We realize living in a hospital was no way to live, and it especially showed when you quit talking to us for a couple of months while inpatient. This second chance at life is nothing short of a blessing, and we are thankful for your donor, day in and day out. It was by far the most selfless and most precious gift you will ever receive. We pray for the donor family nightly as we know their loss was tremendous, and yet despite their pain they did something so courageous.</span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">We know that transplant starts down the ticking ‘clock’ if you will, but that doesn’t stop us from taking advantage of every moment we’ve got. From pig piling on each other in the living room, playing hide and go seek, jumping through the sprinkler or just watching a movie together – we have learned the importance of time well spent, and we will continue to do so. We will continue to love deeply and always, all while holding the donor family close. </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div>
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<span style="line-height: 21.600000381469727px;">Because every day when we look at you we remember, you are nothing short of a walking miracle. </span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span></div><div style="font-size: 18px; line-height: 21.600000381469727px;"><span style="line-height: 21.600000381469727px;"><br></span><span style="line-height: 21.600000381469727px;">God is good!</span></div>
Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-78210234642493640712015-08-23T21:32:00.002-05:002015-08-24T06:57:11.582-05:00Year Five: A LetterDear Camden,<br /><br />STOP the madness. I cannot believe that my little baby, the one that made me a mom, is now officially 5. FIVE! That's...ALL the fingers on one hand!<br /><br />Camden has been up to a lot this past year. He started school, going to a Pre-K class that he LOVED. He was so disappointed to go to summer school that "wasn't the same". He is still a cuddler/hugger - giving good hugs at the most random times. He loves to be outside, "when the weather is so nice". He is a great helper, he has chores that he completes every week, he likes to help his dad mow the lawn, and he follows directions fairly well for a 5 year old. He likes to help feed the dog, change the trash, do any of the things I'm doing - especially if it comes to cooking. He can crack and egg like a pro!<br /><br />He loves to swim, and this year he finally made the transition to swimming without floaties. He does great, and is a tan little fish. He gets to swim nearly every weekend, and some weeknights too over at grandma and grandpa's house. He still has sandy blonde hair, ridicuously long eye lashes, bright blue eyes and a tan that many girls would be jealous of. He is about 42 inches tall, and he weighs about 38 lbs, which is small compared to other kindergarteners in his class that are almost 6, and he's barely 5!<br /><br />Speaking of growth - as he has continued to get older his toes are still turned in, causing his little hips to get out of alignment. God has blessed us with an amazing man of God and chiropractor who is helping us line his little body up right. We are adding little foot orthotics to his shoes to help his little feet turn out, and he is doing really well with them. We are believing in this miracle - that as he grows God will straighten him up!<br /><br />He loves sleepovers at Grandma and Grandpa's, after church night on the weekends. He loves the sleepovers even more when his two cousins join him. He calls his cousin Kaitlyn who is 4 days older than him "my best girl". On some days, he will even ask if his brother can spend the night out with him because, "I really want him there".<br /><br />He still prefers a morning sippy cup of milk in the morning, and a sippy of chocolate milk after school. He could live off of hot dogs and chili, I swear he might never get tired of that. He is a slow eater, but I hear that will change this year in Kindergarten, when they have about 15 minutes to eat their lunch. That will definitely be and adjustment, as he takes more time than my geriatric patients take to finish a meal. ;)<br /><br />He sleeps well all night, and can still nap without issue. It's notable that during the school year he gets extra cranky by Friday's - because of staying up late and getting up when Mommy and Daddy leave for work, and there's just short "rest time" or "brain break" at school. On weekend though, he can still nap for an hour or two, especially on days when he has swam hard in the morning or been busy with the family.<br /><br />His little relationship with the Lord is a precious one to see. He was helping his Dad mow the lawn not too long ago, and Dad asked him to push the mower that was turned off, to the front of the house. He started to push, quickly had trouble and stopped. He said outloud, "Hang on a second, I need to pray". He then bowed his head, said a silent prayer, and then looked up with a face of determination. Next thing I know, he's digging his toes into the grass as he's pushed forward with all of his little body weight to make that mower move, and by golly, he did it successfully, all while grining with accomplishment. It was one of the sweetest things to see! It wasn't that long ago that he was sick at school, and his teachers called to tell me they had changed his shirt that he got sick on, but were going to see how he did. I called and checked on him but he made it the whole day. When I picked him up he simply said "my tummy was hurting, but I prayed to God to help me feel better and then he made my tummy not hurt!". Faith like a child, so honest and pure.<br /><br />Speaking of praying, we are working on praying about our whining and fit throwing. We are working on reminding him to stop and pray and ask for Jesus to help him calm down and ask respectfully for his wants or needs to be met - all without throwing a fit. He still has his good days and bad days at home, but overall, he's a great kid and is learning daily. He even told me the other day that he knew he could pray about his legs growing to be even lengths and that "God was going to fix it". Amen, little man; you definitely got this! <br /><br />He is working on memorizing his first Bible verse, and pretty much has it down pat. Proverbs 12:22 is the verse. It was given to him at Gymnastics class and we talk about it as often as possible, and we repeat it in the car so he has it down pat.<br /><br />Gymnastics is another new thing for him. He has so much energy, yet he could sit inside and watch his favorite TV show "Paw Patrol" for the entire night if we let him. So, we enrolled him in a gymnastics class for now. I think it's been good at teaching him to listen and follow directs, and in a large group setting. This will hopefully be something he will enjoy doing, and maybe he will want to try other sports and activities as we go on. He definitely loves swimming and has been asking about taking more swimming classes. We will see what develops over the next year for sure! <br /><br />He's a smart little guy, always able to tell me different facts about things, and he is constantly learning. He still has some difficulty with speech, 'chip' and 'ship' tend to sound the same when he pronounces them, as do 'shoes' and chews'. Those darn "ch" sounds! Another thing is "think". It always comes out as "fink". I love it. And he told us that his grandparents recently took a vacation to "Alasaka" which - I didn't even WANT to correct him. <br /><br />And oh, this little boy as a big brother. It is just heart melting. There are times when gets frustrated and pushes his brother, or takes a toy away from him, but you can tell he immediately knows it's wrong. As soon as Caysen starts to cry, he will be hugging him, apologizing to him and trying to get him to be quiet - and hurry! - before Mom and Dad hear! ;) <br /><br />But in all seriousness, he is the BEST big brother. He is incredibly patient, he likes to teach him how to do things and get Caysen to follow his lead. He will pat him ever so gently on the head and talk to him, while Caysen "mm-hmm's" and nods in agreement with whatever he is talking about. He understands what it means to take turns, who goes first, who gets to watch a show and he is sure to make sure Caysen gets what he wants. Often times he will speak up for his brother, as Caysen will point to something and only Camden will see it, so Camden will speak up for him. He knows exactly what Caysen wants and is one of the best at reading Caysen's speech and motions! He is SO good at taking care of his brother! He will give him rides on his toys around the house, makes sure he has his blankie, and will always share a bite of whatever he is eating. Their relationship is really a sweet one to see. I pray that Camden will always be a great protector for his little brother.<br /><br />Camden, I hope you know how proud we are of you as parents. You are smart, kind, honest and inquisitive. You have a tender heart, a beautiful faith, and a loving little soul. We can't wait to see what is in store for you, to continue to watch you grow, and to enjoy time with you while we have it. You are a blessing in more ways than can be counted, and we can't wait to see the ways God will use you in your lifetime. We pray you continue to deepen your faith and share with others, and allow God to mold you into the sweet young boy you are becoming!<br /><br />We love you to the moon and back,<br /><br />Mommy<br /><br /><br /></span><br /><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIOlbSbwg8LsOOc4gbsqPetuXNb6iMqO0leU-3OEkzZix1Wrf165_wTiywq6Iq5e1d24Nrx6bQLaUZrg_5RGP0DNSHB62zpycCJgaMe24MkH9ms318n-97_X6dgasvIhEeQOR8IVRhNtSk/s1600/August+%252715+1.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIOlbSbwg8LsOOc4gbsqPetuXNb6iMqO0leU-3OEkzZix1Wrf165_wTiywq6Iq5e1d24Nrx6bQLaUZrg_5RGP0DNSHB62zpycCJgaMe24MkH9ms318n-97_X6dgasvIhEeQOR8IVRhNtSk/s320/August+%252715+1.jpg" width="320"></a></div><br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEeamHcvtgmoNWsZ9nMpRsgLedbrPL7VSgbbsCNCk2f1b8P5esGwPfCYpIUU-X1XBghBIvOTw2Gem1VjDi7vk2R0TqrHqQVMWQqUt3ecImpYMX5xAkzxK7hMDSmIMMCTg6Nw0bZ-DETfyB/s1600/August+%252715+2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiEeamHcvtgmoNWsZ9nMpRsgLedbrPL7VSgbbsCNCk2f1b8P5esGwPfCYpIUU-X1XBghBIvOTw2Gem1VjDi7vk2R0TqrHqQVMWQqUt3ecImpYMX5xAkzxK7hMDSmIMMCTg6Nw0bZ-DETfyB/s320/August+%252715+2.jpg" width="320"></a></div><br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp70t4tS15WaaC8xGJt1WuAKSnwc6y9PjX4MDV3aqHLiHfBap_MTQhdcKxU98wHV0IwcAcSsHF8ZqK9JvmeWrU4WkyVGhS7y1igx76cgVJPUhuLaezjLgUIWmRSPgMVkpq2b73eq2z7NmV/s1600/August+%252715+3.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhp70t4tS15WaaC8xGJt1WuAKSnwc6y9PjX4MDV3aqHLiHfBap_MTQhdcKxU98wHV0IwcAcSsHF8ZqK9JvmeWrU4WkyVGhS7y1igx76cgVJPUhuLaezjLgUIWmRSPgMVkpq2b73eq2z7NmV/s320/August+%252715+3.jpg" width="320"></a></div><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><br /><br /><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-30214327664319551642015-08-16T22:15:00.003-05:002015-08-16T23:19:05.358-05:00That Trust Thing Again...<div style="font-family: Helvetica; font-size: 12px;"><br />My thoughts have been swirling for the past few days, as it seems to happen after a discharge from the hospital. The whole stay went smoothly, but I was surprised at how much I missed two of my dear friends - one being Andi and the other a doctor friend who moved on to another state to practice medicine. I found myself reflecting back on the aloneness while in the hospital - feeling like those that I knew were in my corner were no longer there to "check in" on me, if you will. And the last time we were inpatient - I had just become close to Andi. At that time I didn't realize I was only going to have a short span of one year with her - but in that one year to be impacted in far greater ways that I could ever imagine. To be educated on so many things, supported in vital ways, and calmed with a level of understanding and expertise that was invaluable in our daily life.<br /><br /><br /><br />Some days the void of her loss doesn't seem so black and dark; or so deep and wide. But other days it's nearly impossible to crawl out of the expanse.<br /><br /><br /><br /><br /><br /><br /><br /><br /><br />“For the LORD God is our sun and our shield. He gives us grace and glory. The LORD will withhold no good thing from those who do what is right. O LORD of Heaven’s Armies, what joy for those who trust in you.”</div><br /><div style="font-family: Helvetica; font-size: 12px;"><br /><span style="direction: ltr; unicode-bidi: bidi-override;">Psalms</span><span style="direction: ltr; unicode-bidi: bidi-override;"> </span><span style="direction: ltr; unicode-bidi: bidi-override;">84:11-12</span><span style="direction: ltr; unicode-bidi: bidi-override;"> </span><span style="direction: ltr; unicode-bidi: bidi-override;">NLT</span></div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />This one verse right here. Been doing a lot of thinking on that trust word. </div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />I pray at the beginning of each year for a word.</div><br /><div style="font-family: Helvetica; font-size: 12px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />A word that God wants me to focus on. One that I can learn to fully live by and focus on. In 2014 my word was trust. We had been through so much in 2013, and Caysen was SO sick, I knew that I was still learning to fully trust and grasp what it meant to do so. Trust was what needed to be focused on. Especially since Caysen's Comprehensive Stage 2 was coming up in March of 2014. I had to learn to fully trust in God's plan; the things I couldn't see. It was an incredibly tough year, but I thought I had picked up the meaning of the word. I felt that I lived it, breathed it and learned to completely trust Him with handing Caysen over for such a HUGE surgery. </div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />So this year, in January, I prayed again for my word. And I just could not shake the word "trust" again. I couldn't figure why I should have the same word, but each time I prayed, multiple times over the course of a couple of weeks, the Lord kept taking me back to that same word. Every. Time. </div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />Looking back, I know now that was God nudging me back to that word for a reason. He knew what was to come this year, that I would shortly lose my best friend Andi, and that it would be the hardest, deepest and most painful loss of a loved one that I had yet to experience. Sure, I've lost friends and family but it was different for those losses as it may have been expected or seemed like it was time. That was not the case with Andi. So sudden, unexpected and unfair to us left behind that it has been so very excruciating. This year likely holds a surgery we didn't expect to be quite so soon. The difficult decision to have a littler and younger kid do the Fontan surgery isn't an easy one, especially when there can be so many complications when they are smaller. God knew the difficulty of what was to come that I couldn't see and He wanted me to TRUST in Him, yet again. Because the tests this year have been bigger. Deeper. Requiring more strength.</div><br /><div style="font-family: Helvetica; font-size: 12px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />And for crying out loud, that trust thing is the hardest to get a hang of. Trusting that Andi had bigger things to fulfill in heaven. Trusting that taking her now - someone so young, smart, full of promise and drive to help others. The most knowledgeable person I have ever met - that taking her now was indeed for the best. Trusting that the timing of Caysen's surgery is perfect for him and his little broken heart. Trusting that he won't get sick and we can do this surgery before fall and before sick season. Trust, trust, trust, in more ways than one. </div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />And just when i think I have it down, I realize that I might have wavered, or doubted. For trust walks hand in hand with faith. The faith that God will carry you through, that His ways are higher than our ways, that his plans for our future are better than we can imagine. Even when that involves heavenly plans for someone that we love dearly.</div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br />When you do finally fully trust in Him, it's like this verse says. He will withhold no good. Oh, what joy it is, to trust. So even though I'm still a work in progress at finding myself fully trusting, when one does succeed and see the blessings poured out hand over foot, or when you feel that comfort and peace knowing God has the future perfectly planned; it's like no other. And a little bit of trust, goes a long way. Once you start to trust Him fully with what you have, it becomes easier to give Him everything. And let me tell you, as difficult as it is - I KNOW, beyond a shadow of a doubt, I couldn't do any of this without Him.<br /><br /><br /><br />God is good, even when I don't understand. God is good, even when I don't see a future - or a way out. God is good, even when I'm hurting, or when Caysen or my family is hurting. God is good. He relentlessly and beautifully cares for us so deeply, that we can't fathom what a joy it is to Him, when we trust him fully. Do you trust Him? You should definitely give it a try. </div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px; min-height: 14px;"><br /><br /></div><br /><div style="font-family: Helvetica; font-size: 12px;"><br /><br /></div><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com1tag:blogger.com,1999:blog-6217716983165330385.post-59194890230914964112015-06-27T21:35:00.003-05:002015-06-27T22:31:59.439-05:00A Letter: Caysen is TWODear Caysen,<br /><br /><br /><br />Well little buddy, you've made it to age two - which is quite the accomplishment considering all you have been through in your two short years. Looking back I never would have guessed we would go through all that we have, that I would have cried so many tears in the past two years, and know all of that and just how much you are THRIVING now.<br /><br /><br /><br />It was two years ago today that my world was grey (literally!) and you entered this world screaming but with 'wet lungs'. Three days from that day, after just being discharged home, we went through more than we could ever guess, due to your half of a heart that was not detected prenatally or even postnatally.<br /><br /><br /><br />Despite the warnings about the cardiogenic shock and the damage to multiple organs and resulting brain bleeds affecting your motor movement, your eating habits, and your overall ability to function; you continue to prove to everyone just what you CAN do. And if you get anything out of this letter or living with half of a heart, that is what I want you to focus on. Exactly what you can do.<br /><br /><br /><br />These days you are still hovering around 21 or 22 lbs. You are getting taller, having gained an inch in the last month or so, measuring in at 32 inches. You wear anything from 12 months to 2T, 2T things swallow you up. Pants and shorts tend to range in the 12-18 month area. Your swimsuit is a 12 month size and we can barely keep it on you! You wear a size 4 diaper, a size 5 shoe, and a grin as big as Texas, with a single dimple in your right cheek that one easily gets lost in.<br /><br /><br /><br />You continue to grow teeth in the most random of patterns, and are currently cutting some eye teeth. You still only have 4 bottom teeth, but have about 8 on top. Your eating habits vary greatly. On days where you have a fever from teeth, you don't eat at all. We end up using your g tube to push veggies and fruits in you. Otherwise you have a fairly good appetite. Some of your favorites are still hummus, salsa, avocado, hot dogs (you bring me the hot dogs from the fridge allll the time!), the soft and crunchy parts from Daddy's cajun trail mix, steak, most fruits, goldfish, and you really love pomegranate. You still get meds and soy formula through your g tube as your intake is still small in regards to what you need to eat to grow. We keep hovering around that 22lb mark!<br /><br /><br /><br />You have the greatest laugh. I can't even describe how bubbly and heartwarming it is to hear your giggle. And when you laugh your dimple comes out and I just want to eat you with a spoon, you are just so adorable! You are almost always smiling (unless you are teething), and you LOVE to be outside. You beg to go out almost non-stop, especially now that it's warm.<br /><br /><br /><br />Finally, you are starting to communicate more! You can say "bye" really well (which sounds like a southern bye-'bah'), mom, dad, brother, bubble (for Bubble Guppies the show - or to blow bubbles), Pearl, all done, more, thank you, bath, night night". Just this past week you started saying "no", and it sounds so cute when you say it (I'm sure that'll change, but for now - your tone is adorable!) I'm sure that I'm missing some, but that's a majority. You sign some words that you don't say, Like "please". Sometimes you will say "more" while signing "please". Even though you don't talk a whole lot, you get your point across. You will walk up to whoever you want to talk to and bang on their leg or arm with your open hand until they respond to you. Once you have their attention, you point. And let me tell you, you are the valedictorian of pointing. You can point at all sorts of things to get your needs met, or to get people to understand you. You answer most questions with "uh huh" in yes fashion, while nodding. It's pretty adorable, because we can ask you all kinds of things and you will mostly respond with a yes, with your slow and deliberate head nod.<br /><br /><br /><br />Your memory amazes me. I can still show you a picture of Andi and you smile and point. I thank God for using you to allow me to meet such a beautiful person and have her in my life. She played a huge role in your life, and even though you won't remember her in the future, I have some priceless pictures of you two that I will always cherish! I will always talk about her to you, and I hope that you will always know what she meant to our family. We were so blessed to have her in our lives while we did.<br /><br /><br /><br />You love the water. Showers, baths, swimming pools, puddles. You can't seem to get enough of the water to tide you over. You love being outside and that coupled with water - the swimming pool may be your best friend!<br /><br /><br /><br />You also really adore your brother. You will talk about him, ask for him, point out things that are his. You know to take his blankie to his room and put it on his bed so he can find it after school. You love to do anything he is doing, eating or trying. He's extra patient with you, and your relationship is quite precious to see.<br /><br /><br /><br />Another major milestone for you was allowing time away from Mommy and tolerating drop off at the church nursery. Now, you walk in proudly, eager to play with their toys. You will pop your paci out of your mouth, give me a little wave and say "bah bah" and you're on your way. You still love your Mommy comforts, but lately you have been more of a Daddy's boy than EVER! You ask for Daddy all the time, you call for him in the night, you want him to hold you, play with you, and you want to go with him EVERYWHERE. When I get home in the afternoons before Daddy, you almost always point out his mower and his blower and remind me that it's "Daddy's", and then ask to mow.<br /><br /><br /><br />Your sleep schedule is still pretty whack. You do what you want to and when you want to! You are sleeping through the nights a little better, but some nights you are up and the only way for you to go back to sleep is to bring you to the center of the bed with Mom and Dad. Don't get too used to that buddy - it's just that Mom and Dad are desperate for sleep! You usually go to bed around 9/930 and are usually up to see us off about 545ish. Luckily your Cici watches you during the day so you can nap as you are tired. On a normal day you will nap about 2 hours at midday - but you're always switching it up on us, sometimes needing two naps.<br /><br /><br /><br />Speaking of your Cici - how thankful are you for her? I can't think of a better way to have things for you. You get to stay home in your germ free environment if needed, and you can nap and eat on demand. It works out great because Physical Therapy and Speech Therapy still visit us at home, and Cici takes care of all of that. She makes you food, vitamixing healthy things to put in your gtube - like beets and kale, she rocks you when you're teething and need extra cuddles, and is there to give you round the clock Motrin and Tylenol when you are teething or sickly. She's been there for you through thick and thin, especially through the really difficult times. We are so thankful she can do this for you!<br /><br /><br /><br />This fall should be an exciting time for you and Cici. Your dad and I talked seriously about putting you into daycare, but at the time you still seem to have so many demands and it's so expensive for part time care in two places. So far we have decided to keep you at home for a bit, and allow you more freedom. This fall you will start a gymnastics class, and you will also go to a daytime Bible Study Fellowship class once a week. You still get interactions with more kids, hopefully learn some more social skills all while still being able to care for you and your special needs. This will allow us to keep you close in case you get sick or aren't feeling well, without anyone having to miss extra work time.<br /><br /><br /><br />We are so excited for what your future holds. Of course, in the near future is another open heart surgery to complete the palliative care, but other than that - seeing what else you can accomplish when something is put in front of you is rewarding to see. When I reflect back on everything, I get flash backs of Chris and I wearily dropping ourselves into bed at night after the long NICU days, interactions with doctors, doing everything we could to be a part of your care and getting well, as well as trying to care for your older brother. I vividly remember the outfit you wore that day to the ER, the staff gave it back to us to take home that night because there was no way you were going to wear it with all those lines. At the time, it was like a gut punch. Were you ever going to wear it - or anything for that matter, again? Your daddy and I took that little newborn sized onesie, and we put it on a baby pillow in between us in bed, along with a prayer blanket that was made for you. Nightly, we would clasp hands and pray over it - praying for you, for your future, and for all that God could do in your life. They were often clinging, desperate and begging prayers, but nevertheless, we prayed over that little white button up onesie with animals on it. Some nights, I would be home so late - I would wake your Daddy up to pray, or sometimes even clasp his sleeping hand and pray while he rested. We did that during your whole NICU stay, praying that you would get to come back home to us, believing in God's faithfulness and never giving up hope.<br /><br /><br /><br />Just the other night, you cried from your crib in your room. Your Daddy went to grab you but before he got up he said "its already 4, can I just bring him here?". I mumbled yes, while he stumbled to get you. In that time I thought back, to the onesie. When it was just your clothing between us for 70 long days and nights, not knowing if you would ever make it home again. And now, you'll cry at home, and we get to put your little 22 lb self between us. Time can change so many things. In two years we went from a tiny and empty onesie to having you really there with us, and we have taken many steps and detours along the way. But hitting each milestone? Is such a beautiful blessing.<br /><br /><br /><br />Caysen, you are living proof of what you CAN do. Of what God CAN do. You have had more near death and terrifying experiences than most people do in a lifetime. And here you are, showing what together you and God CAN do. You can achieve whatever you dream of! You have proven exactly what you can do by walking and now running after your brother. If you want to run a business, you can. If you want to help others (and I hope you always will), you can. If you want to play sports, I'm sure not going to stop you (cardiologist approved, of course!). But I want you to know, that living with half of a heart may come with disappointments. Be prepared for those. There are times where you may not be able to keep up. Where you will have to sit out. But I want you to remember that is momentary. Please focus on the fact that you CAN do whatever you put your mind to. And you have done it! You can walk. You can talk. You can eat. You can. You can. You can! Don't let the can'ts discourage you.<br /><br /><br /><br />And that Caysen, is the truth. God is why you can do anything you put your mind to. You can! God is faithful. God is good. He will see you through. You may not always understand why or how or the path it takes to get there, but He will always see you through! The Lord will fight for you, and he already has. If you learn only one thing in this life, I hope that it is just that - faith and trust in the Lord, and just how far it will take you!<br /><br /><br /><br />We love you so much Caysen, your hiccup laughter, your darling dimple, blond hair and ornery sense of humor. You, my little one, are a perfect example of mercy and grace and God's promises. We love you to the moon and back!<br /><br /><br /><br />As long as I'm living, my baby you'll be,<br /><br /><br /><br />Mommy<br /><br /><br /><br /><br /><br /><br /><br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><br /><br /></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh482d_aAXRJI0fWWo99wgB_1tjzJlSbYxMBAou-sQUTGpS5NmcfQvXTZeV7xW9ZYVo_aJlYC7VtlAxJD71XPs0y2hgGGUeUkbb3xmCowXDgUREvTlJaf7Evr7dFm2mGnxXDgB8J1uBkxrM/s1600/Caysen+2+years+%25283%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh482d_aAXRJI0fWWo99wgB_1tjzJlSbYxMBAou-sQUTGpS5NmcfQvXTZeV7xW9ZYVo_aJlYC7VtlAxJD71XPs0y2hgGGUeUkbb3xmCowXDgUREvTlJaf7Evr7dFm2mGnxXDgB8J1uBkxrM/s320/Caysen+2+years+%25283%2529.jpg" width="320" /></a><br /><br /><br /><br /><br /><br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><br /><br /></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgf4T3QgOLRta1GQuoCxOhfwz-SPmVOzpI6_5VHAKN1_zTkR45OvMIzFX33wA6qCRnE1A3re3xN-HYCwhW1IzbmxW07IypPFNAlGA9zmZUPnJeROKV_mnjtFre3wGZx97kHiicrA_l_N1Xk/s1600/Caysen+2+years+%25284%2529.jpg" imageanchor="1" style="clear: left; 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text-align: center;"><br /><br /></div><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLbcF78SbSsiqDxEzAs1br-G6HfZCyqxdk8-Eij86BOFyXzb4wwI62sYue8RxCFGwCKyf3D683v69pO891j3XU_Y_ku05t0mj2DVsv3F1IuUw3W2ZgDO0m3KxYIXzq_yPLawrb8wQLidIw/s1600/Caysen+2+years+%25285%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiLbcF78SbSsiqDxEzAs1br-G6HfZCyqxdk8-Eij86BOFyXzb4wwI62sYue8RxCFGwCKyf3D683v69pO891j3XU_Y_ku05t0mj2DVsv3F1IuUw3W2ZgDO0m3KxYIXzq_yPLawrb8wQLidIw/s320/Caysen+2+years+%25285%2529.jpg" width="320" /></a><br /><br /><br /><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /></span><br /><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: x-small;"><br /><br />I would have lost heart, unless I had believed that I would see the goodness of the Lord in the land of the living. Wait on the Lord; be of good courage, and He shall strengthen your heart; wait, I say, on the Lord!<br /><br />Psalm 27:13-14 NKJV<br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-55557716395955625052015-05-28T20:58:00.001-05:002015-05-28T22:05:54.970-05:00Nine monthsIt was just yesterday that I was dropping of my big boy for his first day of Pre-K. And here we are, finishing up the year and I have a Kindergartener on my hands.<br /><br />How exactly does it happen?<br /><br />I reflect on just how much he has changed in that span from August to May. In all reality, 9 months is so short - its just the time it takes for someone to have a pregnancy, the time it takes for people to safely lose weight, and its the amount of time it takes to get a copyright. In that time though, big C has had a birthday, a few good holidays and all the seasons in between.<br /><br />When I dropped him off for his first day of Pre-K, he was still three. He was shorter, ornery, and huggable. He liked extra cuddle time, he needed help making every little decision and he was learning about his personal choices and consequences. He adored spending time with my best friend, Andi. She would come and play angry birds with him on the iPad, give him hugs and build marble tracks with him. He loved it.<br /><br />He's so big now, the boy that made me a mom.<br /><br />So opinionated. He moves so quickly, is tall, and is four. He's a great big brother, often sharing with his brother or pointing out the new things his brother has learned. He prays nightly for his friend Andi that he misses, and prays for her family. Every. Single. Night.<br /><br />He is the most tender hearted, compassionate guy when it comes to his loved ones. He loves stairs, thrives on routine, and still is addicted to his morning sippy cup with milk. (Daddy swears the milk doesn't taste the same if you take the sippy away, so I guess it will stay for now).<br /><br />Caysen has changed too. He went from just learning how to walk, to trying to run. He went from no teeth, to 12 teeth. (only 4 on the bottom!) He went from super short and barely growing to gaining inches. He went from barely talking to nodding yes and no, signing more and speaking more clearly. He went from crying at drop off to church nursery, to walking in and waving bye, as he's ready to play with their toys. He went from crying in swimming lessons to begging for more, wanting to jump off the side over and over.<br /><br />I look at how my life has changed. I stopped pumping for Caysen in that time, dealt with another winter, learned how to shoot a gun, took on an intern at work, and Caysen got his first real sick bug, which was super scary for a bit because of course all the signs of sickness are also the signs of heart failure. I learned the importance of a good strong hug. I learned the importance of appreciating others. I learned that I desperately love thieves essential oil to help with any sickies. And, I lost my very best friend, in an incredibly unexpected and painful change to the story that I had pictured in my head. Through her loss, I gained a new best friend. I researched more than you would imagine about health concerns and HLHS. I cried more than I ever thought possible. It's hard to describe the changes that are so small yet they seem like something insurmountable, but really, things are just SO different.<br /><br />When I think back to where I was in August, I NEVER would have pictured this road. The way things have changed. Doing life so differently than I was before, yet still so similiar.<br /><br />God has a plan. He knows what he is doing, and He knows better than I do about what will come and what is to be. I have to trust in Him. Trust in the path he is taking us on. Trust that this road that we are taking, this one that I didn't picture, is indeed the perfect path.<br />God always has different ways of drawing us near, bringing us back to Him. In those moments when we feel alone, those most painful nights, God is closer than we can imagine. He is over everything, walking us through it, by our side. Like it says in Exodus 14:14 - The Lord will fight for you, You need only be still. And in those dark moments, he is fighting to draw you close.<br /><br />2 years ago in May, I started having health problems while pregnant with Caysen, including loss of vision. If you had told me 2 years ago that this is the road we would travel and the path we would take, if you were to tell me all the things that were to happen to us in that time, including heart defects, open heart surgeries and traveling across the country for medical care; I would NEVER in a million years believe you. I wouldn't believe the people that have come into my life. In the same respects I wouldn't believe the ones that have gone WAY too soon, jerked so painfully out of my life that the hurt remains. I wouldn't believe the things we have seen and done, or the things we have put our kids through. It would be hard to fathom what we as a family could survive and endure; and how we could grow our faith like we have.<br /><br />But God is good, and always good. We will shout it from the rooftops, just what he has given us. Best friends that save our child's life. (I mean, how many people can say that?) A child that we can look at and just appreciate how far he has come in a short time, that is nothing short of a miracle. Friends, family, and another day to share His great love, and to love each other. Take it all in, friends. If you learn anything from me, please don't miss that! Time here is short, be thankful for what you have loved, and for what you have loved and lost.<br /><br />It can be so easy to wall off, close up, shut everything inward. But no, we are supposed to share burdens, love unconditionally and speak life into one another.<br /><br />So thankful for the last nine months. For the growth as a family. When I reflect back, I am sure to cherish each step. Because in those 9 months I learned just how quickly life can change, and how short our time is here.<br /><br />So...how are you using your time?<br /><br /><br /><br />First day:<br /><br /><br /><br /><br /><br /><a href='http://photo.blogpressapp.com/show_photo.php?p=15/05/28/126.jpg'><img src='http://photo.blogpressapp.com/photos/15/05/28/s_126.jpg' border='0' width='280' height='186' align='left' style='margin:5px'></a><br /><br /><br /><br /><br /><br /><br /><br /><br /><a href='http://photo.blogpressapp.com/show_photo.php?p=15/05/28/127.jpg'><img src='http://photo.blogpressapp.com/photos/15/05/28/s_127.jpg' border='0' width='280' height='186' align='left' style='margin:5px'></a><br /><br /><br /><br /><br />Last day: <br /><br /><br /><br /><br /><br /><a href='http://photo.blogpressapp.com/show_photo.php?p=15/05/28/128.jpg'><img src='http://photo.blogpressapp.com/photos/15/05/28/s_128.jpg' border='0' width='280' height='186' align='left' style='margin:5px'></a><br /><br /><br /><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-1014521686882832442015-05-05T20:43:00.000-05:002015-05-05T22:15:46.178-05:00Time. And thoughts...May already? Where does the time go? <br /><br />Time.<br /><br />Time passes so quickly. Caysen is two months shy of 2. I can't believe it! I'm 3 months out from losing my best friend. It seems so short, yet like an eternity. Our lives are but a mist, as it says in James 4. Hard to keep that in perspective, but we will be reunited. Must. Focus. On. That. It's still so difficult, getting further away. You know, the distance and space of time. It's all really hard to wrap my brain around and to fully comprehend.<br /><br /><br />Pain.<br /><br />Pain is still so strong at times, and at others leaves a smile on my face. It's weird how it does that. God doesn't protect us from the pain, but he calls us on these paths. And its on these paths that so often its incredibly painful before it's beautiful. It is hard to focus on the beauty in the midst of pain. I know there is beauty in the fact that she is happy, healthy, hearing, whole, loved. Doesn't mean it isn't still painful, though. This translates into many other parts of my life. It is incredibly painful to watch my child undergo procedures or surgeries and to not be able to take his pain. It can be physically painful for me to hold him down while he cries out wanting me to save him. But in the end, I can look at his journey and see how beautiful it has been. How strong and brave he is, the courage that he has. It reminds me what a testimony he has to share with others, and most importantly the new and valuable relationships he has brought to my life.<br /><br />Trust.<br /><br />A smart friend of mine said that "insecurity breeds lies and vulnerability breeds trust". Learn to be vulnerable. Be honest and open. It takes bravery, but it allows you to be restored in a way that only God can do. Trust is the single hardest thing to do, because when you trust, you have to believe in others. You wear your heart on your sleeve and risk being hurt much easier and deeper than others. But by trusting others, you are allowing yourself to see true beauty that you can't see if you are guarded and closed.<br /><br /><br />Loyalty.<br /><br />Having those people in your life that you can count on. That you can call on to understand you or just "get it", are imperative. Knowing that no matter what happens, you have that person/people on your side, it's a true gift. Don't let those people go. The ones that fight for you, when you forget how to fight. They are a true treasure, with the God given ability to pick you up when no one else can.<br /><br />And the greatest of these is Love.<br /><br />Love and appreciation for those that have impacted my life is ever present. I am better able to recognize what is important in my life, my list of priorities has definitely changed. Don't take a single second for granted! Love is never wrong, and is always worth it, even if it causes pain or heartbreak. I love to love. This includes people, friends and family, as unconditionally and strongly as I am able. Why? Becuase that is how God loves us. "His love is fierce, it is strong, it is furious". God's love for us is so deep, that we can KNOW that he never starts something without having a plan. We may not see the end, or understand it when we get to it, but He has his reasonings. Maybe its because he's saving us from a future we can't understand, or torment we don't deserve. God can help us to heal, He loves us. In His arms we can know the true meaning of love. I've learned the beauty of loving others as Christ loved us. It's one of the best things we can do, and despite the pain, the vulnerability, and the sacrifices, it's truly one of the most honest and rewarding things to do.<br /><br />Just some quick thoughts on this Cinco de Mayo.<br /><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-79381994951154826662015-03-31T20:18:00.000-05:002015-04-01T06:13:40.341-05:00On Grief<br />Grief.<br /><br />It's a tidal wave of emotions, a pool you can't seem to swim out of. You seem to have forgotten your life vest, and you do your best to just float.<br /><br />Some days are good. You accept things, you realize why things are that way and the hurt is minimal. But other days...it hits you like a ton of bricks. It's so incredibly difficult and no matter what you do, you can't seem to get out of your funk. You question why repeatedly, and you just can't seem to understand. The hurt cuts so deep that you would do anything to get away from the pain. <br /><br />I was watching Grey's Anatomy a few weeks ago they said a line about one of the characters who was undergoing a surgery and not expected to live. <br /><br /><span style="color: black; font-family: Georgia, 'Times New Roman', Arial; font-size: 14px; font-weight: bold; line-height: 18px;">"She's in my head, but I'm not ready for my head to be the only place where she exists."</span><span style="color: black; font-family: Georgia, 'Times New Roman', Arial; font-size: 14px; line-height: 18px;"> </span></div><br /></div><br />yeah, that. Do you think anyone is EVER ready for that? I can make a safe assumption here to say that in most cases, no. People aren't ready for that. I can think of all of the friends, family and co-workers of my dear Andi, and I can tell you in that instance? Beyond a shadow of a doubt, NO. Definitely not.<br /><br />I've done a lot of reading lately, Bible devotionals, books, really anything. A few on the specific topic of grief and healthy grief. One thing that seems to come up repeatedly is that if you don't talk about it and deal with it from the beginning, it manifests in unhealthy ways and will continue to be a bother for years, even messing with your own personal health.<br /><br />I read this particular exerpt in one of my Bible reading plans on YouVersion. It's called Deep Grief and is by Lysa TerKeurst:<br /><br />Deep Grief<br /><br />I stood at the side of a casket too small to accept. Pink roses were draped everywhere. And I watched my mom as she lay across the casket. Within that casket laid part of her heart, so quiet and so still. Her little girl was gone.<br /><br />It was the type of loss that cuts a heart so viciously it forever defines you. A loss called "deep grief'.<br /><br />I remember standing paralyzed at the funeral. Just days before we were doing everyday things; suddently it all stopped. People were everywhere. Soft chatter filled in the gaps of our stunned silence. Eventually people went back to their own lives, and we carried on with ours, bound in deep grief.<br /><br />I desperately longed for God to fix things. To take away my bloodshot eyes. To take away my anger toward him. To take away my guilt for being the one that lived. I felt I didn't deserve to be happy, ever. <br /><br />This is the reality of deep grief. Even when you love God and believe in his promises, healing takes time.<br /><br />It takes wading through an ocean of tears.<br /><br />It takes discovering one day that the sun still shines and it's okay to smile.<br /><br />It takes prayer, and a decison to stop asking for answers and to start asking for perspective.<br /><br />Then one day you take off the blanket of deep grief. You fold it neatly and tuck it away. You no longer hate or resist it. For underneath it, wondrous things have happened. Things that can only come about when Divine hope intersects with a broken world. <br /><br />And finally you can see years stretching before you once again. You look up, blow a kiss, wipe a tear and find it's still possible to dance.<br /><br /><br />I just love how she worded this. It is so honest and true. Those are all of the initial feelings that one might feel, and it is just so hard to accept. She goes on to the part where she talks about taking off the blanket of deep grief. The first thing I noticed is that she didn't mention a time frame. Because, there is no time frame. It takes as long as it takes. You may wear that blanket for a LONG time. It may take a while before you feel comfortable without it. You get to a love/hate relationship with that blanket. It's almost like a security blanket, but at the same time it's not healthy. Because what grown adult takes their blanket with them everywhere? But that doesn't mean that it's a bad thing. In that moment, at that time, you do what you need to do to cope. To grieve. She gives hope, saying that eventually one day you will be able to step away from it. You won't have such a love/hate relationship with grief. The part where she mentioned that you will "see years stretching before you once again"? That part is SO comforting to read. When you lose a loved one, and especially unexpectedly, it seems like you can barely see until tomorrow. The thought of looking ahead is an impossible task. There is just no way to even think of seeing years ahead. It is just unfathomable.<br /><br />It's good to know that one day it will be.<br /><br />Even in the Bible, Jesus wept over the death of his dear friend, Lazarus.<br /><br />It says in John 11:33-36; (we pick up where Jesus is speaking to Mary - who was the sister of Lazarus)<br /><br />When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. "Where have you laid him?" he asked. "Come and see, Lord," they replied. <u>Jesus wept</u>. Then the Jews said, "See how he loved him!"<br /><br />How beautiful is this scripture? Jesus wept right along with them. Jesus was not above the painful and crushing emotion. Jesus wept. And so can we. It's perfectly normal. God wants to hear your heart, and by letting it all out he can slowly begin the process of helping you heal. God weeps along side us as we grieve our loved ones. He feels our hurt and knows our pain. And when we start to heal, he can give us hope and comfort. We may begin to realize what a beautiful place our loved ones have reached. To have all the things the Lord can bless them with in heaven, and to be perfectly healed and well, and rejoicing in His greatness.<br /><br />But for now, it's okay to cry. Its okay to hurt, to be mad and sad. To be homesick to join those loved ones in heaven. Because they are experiencing one of the most beautiful things that anyone has ever been given, and to join them one day in heaven will be a glorious meeting. Our time will come, but for now we must carry on their legacy here on earth. And what an honor it is, to have the chance to do that!<br /><br /><br /><br /><br /><br /><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-44227892730126493002015-03-24T22:24:00.001-05:002015-03-25T22:14:34.441-05:00What you need to know about.... PTSD.PTSD.<br /><br /><div><br /><br /></div><br /><div><br />Post Traumatic Stress Disorder. </div><br /><div><br /><br /></div><br /><div><br />Most people don't know what that is, or the different levels of severity. I'm here to say that just about everyone out there has likely had some sort of experience with a traumatic event in their life. PTSD is all about those traumatic events and how we cope. Keep in mind, it can also be a reaction to a traumatic life stressor, and everyones stressors and how they handle them are different.<br /><br /><br /><br />After my experience with Caysen, the last few weeks of pregnancy, the first few -- oh 10 months of his life -- I would say that I have a touch of PTSD. I always considered myself the opposite of a helicopter parent. I was laid back with Camden, letting him eat dirt based off the philosophy, "God made dirt, dirt don't hurt". I let him cry it out, a little bump on his head never hurt anyone, and once when he split his forehead open a little bit - I just super glued it together instead of rushing to ER.<br /><br /><br /><br />Then Caysen came along, changed up my whole parenting style. Suddenly, I became a germ sanitizing freak, carrying a cart cover and hand sanitizer everywhere. I hover, and when he sniffles and I tend to worry about hospital stays, needing oxygen and watching for prolonged blue spells. Why? Because in the past when he tanked, it would happen so fast. And having watched your child fight for his life on more than one occasion, it tends to mark you.<br /><br /><br /><br />Most of you all know that I work in the health field, specifically mental health. In all of my years of experience if I have learned anything, its that no one is spared from this area. Mental health is an interesting thing, really leaving no one untouched. PTSD from events can effect you and shape your future.<br /><br /><br /><br />Life events can leave you scarred and scared. Scared to break down walls, to unnumb yourself, to share your feelings. They can leave you feeling isolated and alone, leaving you clammed up and in bed, not wanting to face the world.<br /><br /><br /><br />People need to know that there is no shame in getting help when you need it. About talking about your stressors. Talking to friends, to counselors. There is nothing wrong with admitting that you can't do it alone. In fact, there is more strength in admitting you can't do it alone. That is admirable, admitting you need support and taking things in stride with your head up, determined to not let it win.<br /><br /><br /><br />And most importantly, I hope people use this time to know that their one true helper and healer - is God. He's always on your side, he will never leave or forsake you. I read in a book about a golfer - and how they look to make shots. Do they focus on the trees they are trying to shoot through, or do they focus on the gap and what's beyond it? The gap. That. That's what we have to remember. Keep your eyes on him. Keep your eyes on the gap and what is beyond.<br /><br /><br /><br />I have seen PTSD come in so many ways, shapes and forms. I have seen it attack loved ones in the form of sick family members or illnesses, to physical attacks, to a variety of emotional situations.<br /><br /><br /><br />It can rear it's ugly head at any second. Caysen quits tolerating his feeds for two days and naturally I want to start getting jittery and analyze every waking move, take notes on every missed or vomited feed and try to figure what the root of the cause is. I tend to pray for fevers and diarrhea so I can chalk it up to a virus - and not something like poor heart function/heart failure. My life is so drastically different with child number 2, I never expected to pray for a virus to ease my mind.<br /><br /><br /><br />This is just my own personal experience. But in my world, I have witnessed many different people battle PTSD and each battle is unique. Just remember, that you never know what someone is fighting. Be compassionate, live kindly. Encourage others. And when someone wants to open up to you to talk? Listen. Share. Encourage them to seek help however they may need. And remind them of their Heavenly Father who loves them so deeply, and so intensely and is the comforter to us all.<br /><br /><br /><br />And finally - the why. Why does PTSD exist? I have no answers for you except that we live in a broken, broken world. And that is why our hope lies in Him.<br /><br /><br /><br />Jesus replied, "You do not realize now what I am doing, but later you will understand." - John 13:7<br /><br /><br /><br />The thought of my suffering and homelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss. Yes I still dare to hope when I remember this: The faithful love of the Lord never ends! His mercies never cease. Great is his faithfulness; his mercies begin afresh each morning. -Lamentations 3:19-23<br /><br /><br /><br />Blessed are you who hunger now, for you will be satisfied. Blessed are you who weep now, for you will laugh. -Luke 6:21<br /><br /><br /></div><br /><br /><br /><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com1tag:blogger.com,1999:blog-6217716983165330385.post-53145553123265200832015-03-05T21:41:00.000-06:002015-03-08T16:33:26.145-05:00Time Heals All Wounds...or Not.<div>
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Yesterday was tough. A month has passed, and Andi just seems so incredibly far. I don't want to be further away. The further away from that day we go, it almost seems to make it worse.</div>
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The saying goes, "Time heals all wounds".<br />
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That saying makes me wrinkle my nose in frustration. </div>
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Why, you might ask? Simply because, the wounds remain. Eventually, like you would have with a real life wound, it will scab over and be covered with scar tissue but visible scarring remains. On top of that, you also have the emotional pain associated with the injury.</div>
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No matter how you are hurt, scars remain. Those scars remind us that the past is, indeed, incredibly real. </div>
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Unfortunately, as time goes on from such a great loss, the pain remains fresh for those close. The wounds they bear seem to be cut that much deeper, wider and the injury is just so intensely and consistently present. To those that weren't as close, they seem to carry on without as much pain or hurt. It's as if their scars heal so much quicker, and those of us trying to slowly heal get left behind and forgotten about. We seem to sit behind stuck in a dimly lit hospital room attached to a wound vac because our non-healing and stubborn wound has left us hospital bound, unable to free ourselves from cords to get out to the fresh air and everyday routine. (sorry for the hospital reference there..)</div>
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The hard part about losing a loved one? The scars aren't visible to just a passer by. To co workers, to strangers, or even on a day by day basis. You can't know the injury by looking, there is no attached wound vac, no zipper scar, no visible chest tube scarring. When others look at me, they don't know the scars on my heart and soul, the pain of my loss, or that I have only acknowledged that loss no less than a hundred times already in the span of six hours upon waking for my day.</div>
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Sure, time will help to heal the wound of loss, but there will always be reminders. </div>
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But at the same time, I almost don't want to heal. I want those reminders. I want them repeatedly, so that the legacy of my beautiful friend lives on. I don't want it to heal completely and be like our friendship never happened, our support of each other, our disagreements, and our amazing triumphs over difficulties and trials. I want to be marked, forever. People need to know what I knew about her as a person. They need to know how she changed lives. They need to know about her compassion for others, how genuine her love was for her patients and families, and the way she served others. They need to know how she saved lives. </div>
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In the same way, I want to be sure that I live my life so it is known that I have been marked by Christ. I want reminders of his goodness, his grace, how he has walked me through the hard times and how I can prove it by my scars. People need to know Him. I need to share with others His goodness, His encompassing love that surrounds me and gives me peace when I feel like there is just no hope. They need to know how He changes lives, how He cares for us. In the same way that Andi helped saved Caysen's life, others need to know He saves lives. They need to know that we get to see her again, because of Him. That she is safe and healthy and with those who went before her - because of Him. They need to know by His grace, we are saved through faith. They need to know that He saved her.</div>
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Wounds suck. Especially the slow healing ones. As time goes on, it seems as if others have forgotten, but I have not. I'm still deeply changed by the loss of Andi, and always will be.</div>
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Thankfully, God has given me new interactions to try to help me with healing. Friends and family of Andi's that are with me as we walk through this healing process. I will always speak of Andi and share about what she did for us. I will always try to live my life in the way she did, serving others and being so incredibly selfless. (I remember when she told me that she couldn't drive through a McDonalds without donating EVERY TIME to Ronald McDonald House because she knew how many people were served by those - including some of her very dear friends.) She spent more time thinking about others than herself. She always went the extra step, whether she had the time or energy for it, she did it anyway because she cared. She was dedicated to helping those in need - and the more I think about it, that is very Christ-like in itself. </div>
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I want to be sure I live that way. Caring for others, devoted to them, and most importantly sharing the love of Christ. Andi is happy and healed and well in heaven, and we can all have that too! We all have that to look forward to. We have that because of God's deep love for us. All we have to do is accept it.</div>
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It's a place that is so beautifully perfect, we don't need time to heal wounds. We will already be healed. Perfectly. </div>
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There will be no scars. </div>
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"He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away. He who has seated on the throne said, 'I am making everything new!' Then he said, 'Write this down, for these things are trustworthy and true'". - Revelation 21: 4-5</div>
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<span style="background-color: white; color: #181818; font-family: Georgia, 'Times New Roman', serif; font-size: 14px; line-height: 18px;">“Listen to God with a broken heart. He is not only the doctor who mends it, but also the father who wipes away the tears.” </span></div>
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<br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com1tag:blogger.com,1999:blog-6217716983165330385.post-32219927819908915502015-02-25T21:51:00.000-06:002015-02-26T08:16:51.730-06:00On WritingWell hello there, it's been a while hasn't it?<br /><br /><br /><br />Life has been so extremely busy, that I lost the chance and time to write. I didn't write Caysen an 18 month letter (mom fail), and I haven't been using my outlet of writing for myself, for my kids, for anyone to remember our journey.<br /><br /><br /><br />Sometimes you just have to be in the mood to write. Sometimes, there just isn't enough time in the world, to sit down and say what you want to say. The words you want to write that you feel inside just don't fall out onto the keyboard the way you like or hear in your head.<br /><br /><br /><br />I have written lots of letters, summaries, stories for both boys, our families struggles, all on this little old blog. Usually they are fairly easy to write, to tell and to express.<br /><br /><br /><br />But a few weeks ago, I was given the beautiful opportunity to write for my friend. The chance to speak at her funeral was one that I knew I wanted to do, no question. The hard part? The hard part is the writing. How does one, with a heart so incredibly full of love and words and adjectives, summarize the best friend they've had into a short little speech that explains what her life meant to you and your family? How is that even remotely possible?<br /><br /><br /><br />It wasn't an easy thing to do. I started over many different times. Deciding what to say that could adequately explain what she meant. I think I did a good job, yes. But I think with more time to heal, more time to deal with emotions, I could come up with a novel.<br /><br /><br /><br />As I sit here while I type this, my sweet little half of a heart youngest son, Caysen, sits in my lap. He lets me play with his extremely cold, blue hand and I kiss his hair, he looks at me with his yogurt stained face, watching the tears slide down my cheek, and he tries to understand what that means. He doesn't understand tears, and searches my face for what I'm feeling. And what I'm feeling is that I still can't believe the journey that our family has been on.<br /><br /><br /><br />The very journey that Andi played a HUGE role in, and that I will forever be grateful.<br /><br /><br /><br />The hardest part to accept - is that she is no longer here. I can accept and know that she is safe, healthy, not in pain, hearing without hearing aids, and will be waiting for us in Heaven when we get there. I feel that she was saved from something worse, more than we could ever think or know because we aren't God himself, and only he truly knows. I know that God took her because that was the best option for her.<br /><br /><br /><br />But, the hard part is that she IS NOT HERE. She isn't here to watch my boys grow. To see Caysen get big, after all she did for him. To know the role she played. She is not here to talk me down from the proverbial medical ledge with a corny joke or funny story; when I'm stressed out from germs and lab results and upcoming heart caths and open heart surgeries. She isn't here to continue doctoring, to finish what she started. To finish what she had such an amazing drive and determination to complete - despite having every POSSIBLE and potential thing she could have to make things more difficult. (hello - have you ever met a deaf doctor - that was still a total bad ass? Have you ever met someone living across the country from her husband and still one of the bubbliest and funnest people you have ever met?). Yeah, didn't think so. Because despite the odds stacked against her, it made her more determined, more confident that she was doing what she was supposed to be doing.<br /><br /><br /><br />That is such an admirable thing. To know, without a doubt, despite the troubles and hardships, that God has put kids and medicine on your heart to do, despite every road block. I pray when God speaks to me that I will always be so obedient.<br /><br /><br /><br />A wise friend told me, which knocked the wind out of me -- but she said that she would never, ever consider bringing Andi back and taking her out of the grasp of our Lord and Savior. She said she couldn't be that selfish. The more I think about it? So true. When we are in His presence, it will be such a powerful thing, so awe inspiring, that we won't even be able to stand upright. We will fall to our knees as His greatness renders us speechless. How could I take her away from that? What a great and beautiful thing, that she is up there happy, healed, whole, with all of the loved ones who went before her, patients she cared for, and her grandmother that she spoke so highly of.<br /><br /><br /><br />I think about her often. I think about her husband and family. I know that if I am hurting, they are hurting a thousand times over. I pray they find peace in the Lord, their Savior. I pray they know, they see, His glory and his goodness. I pray that they turn to Him, as there is nothing, NOTHING, Andi would want more, than to spend an eternity in heaven with her family and loved ones.<br /><br /><br /><br />It doesn't take away from how hard it hurts. Tonight, at bedtime, Camden and I were saying his prayers. He prayed for Andi and her family, and said "Please help them to not be sad and to not miss Andi while she is in heaven". Then he turned to me and asked me "Mom, were you Andi's friend?" I answered yes, and he did something he never had before - He prayed "Please help Andi to not miss Mom too much, and for Mom to not miss Andi". He was hugging me in the same way Andi would hug me, standing high enough so I could hear his heart. I always took comfort in hearing her heart beat, strong and powerful. I would always pray that Caysen's would sound as strong as hers. But at the same time, it was all so bittersweet. I realized I don't get to listen to her heart anymore. Physically or emotionally. I miss physically hearing her heart. I miss knowing what's on her heart. I miss that simple comfort.<br /><br /><br /><br />But because of her, I have THREE hearts in my family to listen to. To savor. To love on with my heart. Like I have said before, she made our family whole.<br /><br /><br /><br />We both said, and I even have it in her handwriting, that God knew what He was doing when that pharmacy messed things up. Him bringing us together was a gift in more ways than we could ever count. Thank you, God. For your goodness you bring to our lives and allowing this angel into ours.<br /><br /><br /><br />"You, dear children, are from God and have overcome them, because the one who is in you is greater than the one who is in the world". 1 John 4:4<br /><br /><span style="font-family: Helvetica; font-size: 12px;"><br /></span><br /><br /><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com1tag:blogger.com,1999:blog-6217716983165330385.post-91457901832704356112014-11-08T22:58:00.001-06:002014-11-11T05:18:21.040-06:00A year ago...<br />Sunday Nov 10th 2013 we waited to take Caysen back to the hospital while chris finished up stringing his Christmas lights. It was a warm day. I held him in my arms in the warmth of the sun, thanking God for the beautiful day, while directing Chris what lights to straighten from the ground. Camden was with grandparents. Caysen was sick and we knew we would have to go back to the hospital, we were just delaying the inevitable and trying to finish up. We had only been home a week from our last hospital stay. He was still so little then, around 12 lbs, with so much hair. He laid across my arms so perfect, and the neighbors came home and smiled at me from across their lawn, glancing at him. He was of course hooked up to his mickey extension and vent tube through his g tube, but it wasn't obvious. I could only smile back at them and think "ha! If they only knew what they can't see". It is true, you never know what someone else is going through, what they may be dealing with. The complete oblivion they saw when they looked at me? I mean, everything looked perfectly peaceful and storybook. <br />At the time he was sleeping in my arms soaking up the sun and breathing my scent. But I knew where we were going within the hour. And I didn't even know just how bad things would get. At the time, he was rejecting pedialyte, crying non stop, not sleeping cause of his gut pain, and we were taking turns sleeping on the floor with him. We waited too long to get to the ER, cause that's when they had to put a line in during his cath two days later because they poked him 50x for IV access and weren't successful. <br /><br /><br />And now today. Hanging the same Christmas lights, on yet another warm sunny day almost exactly a year later. But this year he walks and almost scrapes his face when he falls repeatedly on the driveway. I look at my toothless sixteen month old, and think where we were when he was just 4 months.<br /><br />Crazy. It is so nice to be able to look back and recognize that path. That the suffering is what was actually beautiful. The suffering is where we see God the most. And looking back on the suffering I see the blessings poured out, and see just how close God is. God is good!<br /><br /><br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/11/08/699.jpg'><img src='http://photo.blogpressapp.com/photos/14/11/08/s_699.jpg' border='0' width='157' height='280' style='margin:5px'></a></center><br /><br /><br /><br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/11/08/700.jpg'><img src='http://photo.blogpressapp.com/photos/14/11/08/s_700.jpg' border='0' width='1600' height='1600' style='margin:5px'></a></center><br /><br /><br /><br /><br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=14/11/08/701.jpg'><img src='http://photo.blogpressapp.com/photos/14/11/08/s_701.jpg' border='0' width='1600' height='1600' style='margin:5px'></a></center><br /><br /><br /><br /><p class='blogpress_location'>Location:<a href='http://maps.google.com/maps?q=W%20Quincy%20St,Broken%20Arrow,United%20States%4036.038203%2C-95.804853&z=10'>W Quincy St,Broken Arrow,United States</a></p>Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com1tag:blogger.com,1999:blog-6217716983165330385.post-55917507789864531922014-08-14T21:31:00.002-05:002014-08-14T22:35:59.377-05:00Dear Pump: A Letter<span style="background-color: white; color: #222222; font-family: arial; font-size: x-small;"><div class="separator" style="clear: both;"><br></div>Dear Faithful Medela Pump,</span><br>
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This milk bar is officially closing. <div>
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It's bittersweet, really.</div>
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Unless there is some large change of plans in our family planning, we are likely at our child stopping point. I was always open to three, but Caysen has been quite the doozy. I won't say that I wouldn't ever want others, but at this point I'm just relishing in Caysen and all that he is. I am slightly mourning the fact that my breastfeeding journeys were never what I had determined they were going to be.</div>
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As you may know, my breastfeeding journey with Camden wasn't quite what I had prepared for. He nursed, but wasn't so great at it. His latch was weak, and he was the SLOWEST eater (and still is to this very day), which wasn't kosher for pumping or returning back to work after 11 weeks. Once I did return to work, drinking from the tap eventually ended, and it was a relationship with the pump and I, and I managed to exclusively pump until he was 13 months old. I didn't mind it, doing what is best for my child is of utmost importance, and it was something I wanted to do.</div>
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With Caysen, I was even more determined before his birth. I made sure my milk came in as soon as I could get it to, supplementing, pumping in the hospital - despite the fact that my newborn spent the first 12 hours in the newborn nursery. I had read up on breastfeeding, gotten ideas and advice. I made sure to meet with lactation consultants in the hospital after he was born, getting all the assistance I needed from holds, to how he was latching. He was showing more progress than his brother, but I still used a SNS to help encourage him. I was armed and ready and excited for the journey.</div>
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Things came crashing down on day three, and I did good to even remember to pump that day and thereafter. I kept going at the prompting and encouragement of some NICU nurses and family members. They made sure I was drinking my water, friends brought me lactation cookies, and I trudged along. </div>
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I kept having horrible thoughts cross my mind, "if he dies and I'm still pumping milk, will I be able to handle that?", "why pump if he can't even be fed?". I wasn't sure what I was doing, I just knew that I had nothing else to do while sitting in that NICU room the first few weeks and crying. Might as well make the best of it, right?</div>
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As my hormones leveled and I became clearer headed, I began to have a sense of determination. There lay my baby, covered in wires and tubes and unable to be held, but there is ONE thing I can control, and it's what he eats, when he gets to eat. And I can give him what I feel is best. I timed things like clockwork, pumping every three hours, setting an alarm to wake up at home because I didn't have a baby to wake me. I was going to do this, and it was going to be what he needed.</div>
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Come January, at 6 months old and after lots of extremely bloody stools, multiple inpatient hospitalizations and one GI scope, we had the diagnosis of milk protein allergy. This meant formula. All that hard work, and they wanted me to do formula? </div>
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Nope. I allowed it for two weeks while I went dairy and soy free to accommodate him. I didn't make it that far, throw out that much stored dairy filled breast milk to just stop now. I remained diary and soy free for 4 months, and have been dairy free for almost nine. It is one of the single most hardest diets I have ever done, having to read ALL the labels, not eat at certain restaurants while the rest of the family chows down. It has taken more self control that I ever realized possible, but you know what? </div>
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I wasn't going to quit. I wasn't going to stop, not because of some dietary restriction. I was determined to give him what was best, he already had so much difficulty with GI and digestion issues, I wasn't going to change my mind. I was one determined Mommy. Every three hours, hooking myself up to that darned pump, forgoing sleep for the last almost 14 months to do what I felt was the best for him. He's a little fighter and deserved as much help as I could give him. </div>
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It's come to a time where he can tolerate soy formula, and after almost 14 months, it's time to put the pump down. Caysen is growing beautifully, and his diet is consisting more of foods and not just milk. </div>
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Throughout this terrifying and scary journey I would hear things like, "how do you do it?" and "You are so strong". The truth is, I'm not that strong. You just do what you do, when you feel like there is no other choice. I took it day by day, hour by hour. I had no control in most anything, but that. THAT was something I could control, and once I decided to, you couldn't stop me. It was a first big step in continuing to move forward. I could pump for him. I could wake up each day with my baby in a hospital. I could make it another day, another week, another month. It was the first step in the journey to realizing what I CAN do.</div>
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I hate you Medela pump. And yet, I love you Medela pump. So much of my time and family is tangled up in the tubing of that pump, but it's what made feeding my son's possible. You got me through NICU and PICU stays, two open heart surgeries, and countless nights alone without a baby at home. In those moments that I would wake up in the middle of the night to pump, I would use it to pray for my baby still in the hospital, in the care of nurses, before calling for a middle of the night update if I could possibly stay awake. You got me through physical and emotional pain, and to no longer have regularly scheduled meetings is, like I said, bittersweet. </div>
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Thank you pump, for allowing me to do what I felt convicted in my heart was best for my boys and family. Thank you for allowing me to still feed my babies breastmilk. Thank you for always being there, accountable, steady. Thank you for starting me on the journey of realizing what decisions I can control, and helping me through the difficult times. Without you, this journey would have been completely different.</div>
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Signed, </div>
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One determined pumping Mom</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnt-BwaGMHcRR0ZyDvCLvZwnTYEe5CGMrtxWtkUeDe77EoO9Kr20KDfiYY1yuOZeXn0UBNb7OzTfAqmAlbFFcaJrEvjE8sGHDWcKqRGCm0VDii-kdX1Jj5-JPgm2rC_BrSixUQZnq6vkKc/s640/blogger-image--549825478.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhnt-BwaGMHcRR0ZyDvCLvZwnTYEe5CGMrtxWtkUeDe77EoO9Kr20KDfiYY1yuOZeXn0UBNb7OzTfAqmAlbFFcaJrEvjE8sGHDWcKqRGCm0VDii-kdX1Jj5-JPgm2rC_BrSixUQZnq6vkKc/s640/blogger-image--549825478.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxRPCljTIF19Uo71WXvqTy_UGrZx1c8wJf8iOUDT88Vts-oT2fOHExhW49xpGNMmqFnhLsy_35qP6LTPiYd6QEgZUe94jYQ2HeGsLV0f41RvTaRTAU4y373BdRFNik0OT_rIh6jRZ5jxI9/s640/blogger-image-1693702738.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxRPCljTIF19Uo71WXvqTy_UGrZx1c8wJf8iOUDT88Vts-oT2fOHExhW49xpGNMmqFnhLsy_35qP6LTPiYd6QEgZUe94jYQ2HeGsLV0f41RvTaRTAU4y373BdRFNik0OT_rIh6jRZ5jxI9/s640/blogger-image-1693702738.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsPNlQOHkVO4IYJXcizqEY7rbuy4ND5s9HleZwwYd4tB0df3RoTbV2RKxgLQUnz9bwGnL_Cl27sDvAOrddX8wfylqD-wW7HqBJTUqi-aAPYgUTq09YzwOrxI16D9Ly09spBUR-40ZsVPnH/s640/blogger-image-1428047038.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgsPNlQOHkVO4IYJXcizqEY7rbuy4ND5s9HleZwwYd4tB0df3RoTbV2RKxgLQUnz9bwGnL_Cl27sDvAOrddX8wfylqD-wW7HqBJTUqi-aAPYgUTq09YzwOrxI16D9Ly09spBUR-40ZsVPnH/s640/blogger-image-1428047038.jpg"></a></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBs3DVmYsHfpzwlN4DZC7hyphenhyphenpS7CHQj9U8K2bsT6ObSzeFUz6AMQehZl8XPqCJbUhOgptus3BOWkIpyB5faUalyYAGfvGBn2XPV6cvRQhwfKEzxNGLnR5DGrl4GZoletnfno0YNry-mnU3T/s640/blogger-image-226563317.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBs3DVmYsHfpzwlN4DZC7hyphenhyphenpS7CHQj9U8K2bsT6ObSzeFUz6AMQehZl8XPqCJbUhOgptus3BOWkIpyB5faUalyYAGfvGBn2XPV6cvRQhwfKEzxNGLnR5DGrl4GZoletnfno0YNry-mnU3T/s640/blogger-image-226563317.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOhgYsrpLP0x8QENdCMtPOIuYi0j2QtLm5D5pcdvNhk8B3hHUGiUUBAz_iruPo7JPgmLNbsLxt0d9jI2jnMzxCOnnEe1AHHzGe7p9L_Anma3_CqftOABgSKbat3ynfF2Jty4yTrySvRmKl/s640/blogger-image--801792920.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiOhgYsrpLP0x8QENdCMtPOIuYi0j2QtLm5D5pcdvNhk8B3hHUGiUUBAz_iruPo7JPgmLNbsLxt0d9jI2jnMzxCOnnEe1AHHzGe7p9L_Anma3_CqftOABgSKbat3ynfF2Jty4yTrySvRmKl/s640/blogger-image--801792920.jpg"></a></div><br></div><br></div><br></div><br></div><br></div>
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Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com2tag:blogger.com,1999:blog-6217716983165330385.post-83534944707345075762014-06-26T00:25:00.000-05:002015-08-18T09:17:23.471-05:00Caysen 1 Year: A Letter<div style="color: #222222; font-family: arial; font-size: small;"><br />My sweet little Caysen,</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />This time a year ago, I sure thought I had been through the ringer. I thought your arrival would "solve" my personal health issues and we could move on to our normal, happy life as a family of four. You see, I spent Memorial Day weekend last year, dealing with a terrible headache. A migraine like I've never had. This particular headache didn't go away after multiple sleeps. It lasted for a week. And when it went away, it started taking my vision with it.</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />After a whirlwind of appointments while 36/37 weeks pregnant with you, seeing Neurologists, Optho-Neurologists, getting an MRI, a spinal tap at 37 weeks with subsequent spinal headaches (that are of the devil) to accompany it, we finally decided that it was time to take you out to prevent further vision loss, as no one could say if I would regain it. </div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />During one of those appointments while dealing with spinal headaches at 37 weeks pregnant with a broken down car in a city two hours away, not able to sit up without vomiting and trying to stay cool in the summer heat; my mom, your CiCi, glanced at me and said words that foreshadowed MORE than we ever could have predicted about the coming weeks. She said "I don't know what it is about this baby, but he is special. God has a divine purpose for this baby!"<br /><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />We had an excellent hospital experience for your birth. We had one of the best L&D Nurses, she took the best care of us and later she even came and brought us snacks while you were in the NICU. You were born with wet lungs, crying loudly, and spent the first 12 hours in the newborn nursery. No one told me much of anything, and I trusted their judgment and didn't ask many questions. They kept saying that the issues you had were normal and you would be fine. I'm not a worrier by nature, so I was just so thrilled when 12 hours later I finally got to see you, hold you, and see your dimple that everyone was telling me about. </div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />After 24 hours you were finally released to my room in the hospital. Before we knew it, it was time to go home. Ironically, we were offered an extra night stay in the hospital. But, being a second time mom, I was confident in the decision that we would be okay at home, so we headed out that Saturday afternoon. Little did we know the ride we were about to be in for...</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />We spent that first evening at home, attempting to sleep, recuperate, and get you to eat. It wasn't long before you had labored breathing early that Sunday. We then started a whole new journey, one we weren't prepared for: a diagnosis that got missed time and time again during pregnancy and at the hospital after delivery. </div><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />I'll never forget being visited by the doctor in the waiting room that day. It took a long time for them to come visit us and give us updates after first arriving on the floor in the NICU. We would later find out its because they were pulling out all the stops to save your little life. When the doctor finally did visit, she kept repeating slowly with a shake of her head, "he's a sick, sick little boy", her face grim, she kept looking to the floor and at her clenched fists in between bouts of eye contact. You could tell by the way she drew in her breath before speaking, and the shake of her head when using the word "sick", that it was not good news. Her body language told us that you could tell she wasn't sure how things were going to pan out, and in those moments I've never had my heart sink so deeply in my chest or feel so very torn to pieces. That feeling in my gut, those tears that came that day, I will never forget how it felt. I will never forget seeing others reactions to it, especially your Daddy's quavering voice and heartbreaking sobs as we have to call family and explain what's happening. Never again do I want to relive that, but it seems like it was just yesterday, it's still so fresh in my mind. </div><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />We were finally allowed back to see you in the NICU, where we were explained more of what happened to you, and that it was indeed a heart defect that caused the issue. The cardiologist sat us down and talked us through it - telling us what it meant, even showing us pictures and diagrams to explain. She was careful to remind us that your biggest issue wasn't just your heart, but if you would survive the next few weeks after being so near death. We were finally able to stand over you that evening and stare at you - but you remained untouchable for a couple days, because with each touch your vitals would fall and you were deemed "hands off". How hard that was for me is difficult to explain, but just when you want to comfort your child the most, we could not do so. But what we could do was pray, and that we did - joining hands over your little incubator bed, med pumps whirring putting 14 different life saving meds into you, all while in our tiny NICU room with countless friends and family that would visit us and we would pray over you, claiming power in Jesus's blood, speaking healing words, keeping the faith the best we knew how.<br /><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />You my little one, have been through SO SO much in a short 365 days. You have seen roughly 4.2 months in the hospital - that totals out to 127 days of your first year. This includes a 3 month NICU stay, a month PICU stay, countless stays for gut issues/dehydration and not tolerating your feeds. You've been in cardiogenic shock, reportedly having seizures due to blood on the brain, more jaundiced than most babies while stooling white with liver issues, which landed us in OKC with a liver specialist and a near surgery to help with your liver issues. You've vomited feeds repeatedly earning you a G Tube with fundoplication, you've stooled blood countless times due to an undiagnosed milk protein allergy for the first six months of life. Two open heart surgeries are on that list, as well as almost every scan and test under the sun, ranging from a simple x-ray to sweat test for Cystic Fibrosis, HIDA scan, upper and lower scopes, Ultrasounds, MRIs, and gobs of echoes. You have been under anesthesia roughly 7 times, you have had 4 heart caths, a G tube and liver biopsy, a 13 day hospital stay out of state for your last open heart surgery and in one stay alone you got over 50 sticks in an attempt to get any sort of access to your veins. You have had central lines, multiple arterial lines, PICC lines, and had more cords and wires coming from you in those 127 days than I ever thought was possible coming from such a small body. You have a team of specialists and doctors that you see/have seen, ranging from cardiology, hepatology, opthalmologist, pediatrician, pediatric surgeon (for g tube needs), GI, nutritionist (shout out to cousin Emily!), and you just got discharged from the neurologist with a closed file!<br /><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />We have been surrounded by amazing family, friends and prayer warriors getting us through this past year. They sprang into action, bringing meals, praying without ceasing, offering childcare, donating time, money, love. Visiting us in the hospital, offering continual encouragement through the journey, reminding us how great it will be to look back at what we survived. You have brought new friends and people into our lives, fellow heart moms and families, AMAZING nursing staff and doctors, people that we couldn't imagine how we would have made it through without them and their support. In fact, they are what make the journey bearable.<br /><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />You currently have no teeth, a ton more hair than your brother EVER had (you have had three haircuts already!!), and more chins that I know what to do with. You have a G Tube and are primarily fed through that, since you just haven't shown interest in wanting to eat orally. Your smile is captivating, with a breathtaking little dimple that I can't ever seem to crawl out of. You speak one word to date, "da-da" and your Dad is quite pleased! You nap when you please, but usually not for long enough periods. We are working on getting a schedule but for so long we have been used to you dictating the rules that we don't know what to do! You are addicted to your pacifier and NEED it to sleep. You adore your brother and he is so sweet and gentle with you. You love to watch him, and are constantly observing his actions.</div><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />You are on five medications these days: Lasix, Enalapril, Periactin, Prevacid, and Aspirin. We are currently weaning the Lasix so that's exciting! You wear a size three diaper but due to your big belly I'm likely going to move you up soon if you keep gaining weight like crazy. You wear mostly 12 month clothes, we've been noticing the 9 month stuff is getting pretty tight. You weigh 18lbs and 4oz and your height is 27 and 3/4 inches.<br /><br /><br /><br />You sit beautifully. You aren't able to put yourself into sit, but you can fall out. You lean foward to your knees to reach and act like you want to crawl, and as of three days before your birthday? YOU CAN CRAWL! You have to really want it - and so far you only crawl for two things. A TV remote or a cell phone. You will lay on your belly now, we are working on getting you to tolerate that. You don't roll all that well but you can do it. You aren't a fan of weight bearing, but we are still practicing. Same with oral feeds and speech therapy. You don't quite understand how to eat or drink because you didn't for so long. You are definitely delayed in these modalities, but progressing. You'll get there!</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />As your mom, I don't know that I won't be able to set foot in a hospital without cringing and thinking of all the difficult times we have had. The familiar smells infiltrate my senses and I can identify each room we have ever been in, and what that hospital stay was for, or what news we might have received. I will always have little things that will remind us of our journey together, this emotional roller coaster that has given me more stomach drops, the constant painful wishing I could take your place, numerous tears, but at the same time so. much. joy! I want to take your place daily, and I realize this is such a good lesson. How God must have felt wanting to take His son's place on that cross! </div><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />We are ever so grateful for the path we have been on, leading to new and beautiful friendships, a new appreciation for all that we have been given and most importantly renewed faith and respect for our amazing God and all of his blessings. Without Him, we would not have been able to turn you over so easily into the hands of others for care, or been able to withstand the negative news we were constantly given in those first weeks, or just to survive this year. Our lives were shaken and rocked in a way they never have been, and we will never be the same. You may be living with half a heart, but together we are whole.</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />I have learned to not take a single thing for granted. To recognize how each day is a gift. I have hopes and dreams and aspirations for you, but the most important thing I pray for is for God to use you, use your story, and for you to grow to know and love him. He has taken us further, higher, and deeper into His love and promises than we ever have been shown before, and we will always shout from the rooftops that the glory is to God. In the past year, TWO different times we were told you likely needed a transplant. Once for your liver, another for your heart. And BOTH times, God carried us through when we placed our hope in Him. You, little one, are a true work of God. </div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />Looking at you on the outside, sometimes I forget your half a heart, that you will always be different. But what a blessing to look at you now, and be able to do that. I really can't find the words to describe just HOW difficult this past year was. The almost losing you, the constant gagging, vomiting, psychomotor delays, hospital stays, blue lips, pooping blood, all the negative things. But now when I look at you, I see such beauty. All of God's promises wrapped up in a little 18 lb body. I pray that I will always remember His work in your life with every glance at you.</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />You are truly a miracle, saved multiple times by God's grace. You are stronger than I ever will be, still smiling and happy and I am so humbled and honored to call you mine, and to be your mother. I pray that I will guide you properly as you grow, that you will love with all of your 2 chambered heart - which is fuller and bigger than my whole, 4 chambered heart. Thank you for bringing our family together, teaching us about life along the way. You are simply amazing.</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />I'll love you forever; as long as I'm living my baby you'll be,</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br />Mommy</div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrztDVANLderHeRmiO6h2lN1iUo7zPnt9c6CsQox3Y6GEl0_Yr0cK8Ef8wXlkdHpLrbvvVe86s6PCLUmzT4F_CK2CZL_rS2q867WT32QJFK3cy9kdk6Mu4ztVMLQzMkNLjFqu475qdtWeA/s1600/1+year+1+(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrztDVANLderHeRmiO6h2lN1iUo7zPnt9c6CsQox3Y6GEl0_Yr0cK8Ef8wXlkdHpLrbvvVe86s6PCLUmzT4F_CK2CZL_rS2q867WT32QJFK3cy9kdk6Mu4ztVMLQzMkNLjFqu475qdtWeA/s1600/1+year+1+(1).jpg" height="213" width="320"></a></div><br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg-I0SqBNqmDH6413V62r4p7BbKpoXHBup0IQeXWlAoa8KDnC_5WCtdjYHsvvT7STcl7eQYKxBmwMx8k3gDKUci4l6mNBFlaKvBGzDCvVjvu6lli1Hh5Xt9m-KuXjwPJ8jmQz7DOmVdXyb/s1600/1+year+6.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg-I0SqBNqmDH6413V62r4p7BbKpoXHBup0IQeXWlAoa8KDnC_5WCtdjYHsvvT7STcl7eQYKxBmwMx8k3gDKUci4l6mNBFlaKvBGzDCvVjvu6lli1Hh5Xt9m-KuXjwPJ8jmQz7DOmVdXyb/s1600/1+year+6.jpg" height="213" width="320"></a></div><br /><br /><br /><div class="separator" style="clear: both; text-align: center;"><br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmqQLAuxSGtOa-jUmqYvNWoltixTDECKbKnGf14-UJc5OBVcjVXlBoh9AFxsUfq33urgMDeZOEm_n1Wq1WZ2x1o_5CLl_VNia08LO2gi_qKI_eKLSv9OhIw23OSGQOD0ydfe_7_Yw0uFWK/s1600/1+year+7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmqQLAuxSGtOa-jUmqYvNWoltixTDECKbKnGf14-UJc5OBVcjVXlBoh9AFxsUfq33urgMDeZOEm_n1Wq1WZ2x1o_5CLl_VNia08LO2gi_qKI_eKLSv9OhIw23OSGQOD0ydfe_7_Yw0uFWK/s1600/1+year+7.jpg" height="213" width="320"></a></div><br /><div style="color: #222222; font-family: arial; font-size: small;"><br /><br /></div><br /><div><br /><br /></div><br /><br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com2tag:blogger.com,1999:blog-6217716983165330385.post-5212423883539053302014-06-04T07:27:00.001-05:002014-06-04T07:27:54.903-05:00Exhaustion and Grace<div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">Oh goodness, how nice it is to be past Interstage and to be semi-functioning like a normal baby. It's so nice to not have to worry about the germs of winter, the dehydration of not tolerating feeds due to an unhealthy heart. It's been a trying year, and no one can know the journey until they've walked it.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I think the most frustrating part is that he still is delayed. Still behind in areas that continue to cause lack of sleep. He still doesn't turn or sleep well and isn't so good at self soothing. He wakes us up more times in a night than I can count. But, he's so much healthier now that this shouldn't be taken as a complaint, overall I know that I am more blessed than I could even begin to put into words.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">When I look back on all that we have been through the past year, I am amazed at how far we have been taken and how much we have survived. By the grace of God we did it, and with Him we made it through.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">I have been pushed to the limits, mentally, physically, emotionally. Sleep deprivation is scary and tough, and it is still a struggle.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">People look at little C now and think it is all fine and dandy. He looks good, so things should be easy, right? Well for the most part, it is. But, I still need that little bit of grace. That leeway. It is still hard to not get sleep, to make doctors appointments, to realize that each and every PTO hour of a total of almost 12 weeks in the past year has not been spent on vacation or at home snuggling a new baby but around the whirring and beeping of feeding pumps, ventilators, monitors with nurses talking, that time has been spent at a hospital or visiting a doctor. That's NOT vacation.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">And I know without a doubt it's not the way anyone else would choose to take their vacation. In short, I'm tapped out at times. I'm tired, I'm exhausted, and doing my best to not burn out. It just seems that people forget how hard the past year has been, how hard I have worked to juggle all things Caysen and doctors appointments, hospitals, family, a left out big brother, a husband and a fulltime job. It has literally been, without a doubt, the HARDEST thing I have ever had to do.</span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">So even though things are going well now? I'm still asking for that little bit of grace. I'm still trying to catch my breath from the marathon of the past year. Is that too much to ask? I think it's not.</span></div>Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com2tag:blogger.com,1999:blog-6217716983165330385.post-15825347990013855682014-05-27T21:31:00.000-05:002014-05-27T23:04:31.037-05:0011 Months: A Letter<div style="color: #222222; font-family: arial; font-size: small;">
Caysen,<br>
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We are so so so so blessed to be writing about your 11 months of life. You are getting ever closer to that one year mark and after the year we've had, I just can't believe it!<br>
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You are growing so big these days. You are 18lbs as of your last weight. You are on the chart finally for weight at 10th percentile, but apparently you are stil lagging on height as you are still only at 1st percentile. You wear a size 3 diaper, your clothes range anywhere from 6-12 months depending on the brand, we just started putting you in 12 month clothes and it fits in the shirts just fine, the pants are still a little large.<br>
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We are working on changing up your feeds.You were on a continuous feed until a few weeks ago. We dropped your over night continuous feed and have switched your feeds to bolus, but and recently just switched up your feeds to be four hours apart and bigger feeds. It's slow going but needs to happen. You like not being hooked up to your pump all day long and having more free time! (or maybe that's just mommy!)<br>
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In the past month you have decided to surprise us and drink a little by mouth, but usually only water and only when you want to. It isn't any certain time or thing that makes you want to drink it seems, and there's nothing that really seems to motivate you. We are praying you will conitnue to want to eat by mouth, that you will enjoy it and just decide one day that you are ready to eat food. Right now, you just play in food, make a big mess, and hold it. You like to chew on harder foods like apple slices and chips, but don't prefer to eat much of anything.<br>
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You are getting stronger, and we are noticing some progress! When sitting you will rock foward and bear some weight through your arms. Occasionally you will fall to your stomach, and you don't hate it anymore. You will lay there, and sometmes you will ROLL OVER! I am so excited to annouce that you are now 11 months old and can roll over from tummy to back if you so choose! yay! We have tried to practice bearing weight through your feet and well, you just aren't a fan. We will keep trying!<br>
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Sleep. Oh is sleep ever elusive. You don't always sleep well at night. You wake up if you need turned (since you just learned how to roll, maybe that will change!) You wake up if you lose your paci, and more often than not you were waking up with gas issues and lately you were waking up because either your nap was too awesome or your stomach was really hurting (had a few days off issues of purple blood coming from your stomach). Switching to bolus feeds instead of the long feed and you actually seem to sleep harder. It has been really nice! Hopefully you will continue to improve in this respect!<br>
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We love that you are developing your personality and talking to us more, smiling and laughing and interacting. Your favorite games are Peek A Boo and Pat A Cake, making your dimple show without a doubt. You LOVE to watch your brother, you enjoy doing anything that invovles getting out of the house. Car rides usually allow you to sleep, you enjoy coming to church and watching praise and worship with your ear plugs and serving with us - you are an excellent door greeter! You're quite the adorable little guy and tend to create a traffic jam at the doors when we serve!<br>
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We are just trucking along to your one year mark - happily watching you grow and progress now that you are s/p interstage. It's a thing of beauty, to look at you and realize just how far - you really have come! God has really outdone himself when he gave us you! Planning your 1st birthday gives me nothing more than chills thinking about the journey we have taken. This time a year ago I was having headaches and vision problems, slowly losing my eyesight while anticipating your arrival. Together we have gone through SO MUCH, and I couldn't be prouder of you!<br>
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Love you to the moon and back,</div>
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Mommy<br>
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Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-61666972405470784612014-04-27T22:16:00.000-05:002014-04-27T22:30:40.192-05:0010 Months: A Letter<div style="color: #222222; font-family: arial; font-size: small;">
Dear Caysen,<br />
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What a month we have had! We spent the first four days of this month finishing up our inpatient hospitalization in Ohio. We discharged on the last day of the month of March and welcomed April in happily with nice warm naps and sleep in our own beds. It was fantastic!<br />
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Since we have returned from surgery we are in awe at you and how much better you seem to be feeling. You are digesting you foods at a rate of 135ml an hour. You sleep better, still not perfect but better, for sure. When you wake up now it's for turning or because you lost your paci. At least it's not to wake up to vomit because there was too much gas in your belly! We have followed up with your many an specialists as it has kept us on our toes - thats for sure! In other news our cardiologist is thrilled with your progress. We are working on getting your healthy and bigger and getting you used to your new blood flow. Many of our specialist visits won't be for a few more months, we are finally starting to space things out.<br />
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You weigh in at 16 pounds, 9 ounces and are 27ish inches tall. You are wearing size three diaper, it seems as if we just skipped right on through the size twos. You are wearing 6-9 month clothes, you still have a fairly small waist. You are still getting 5 bolus feeds a day of 140mL, but at the 5 o'clock feed we let you play with food and work on feeding before starting your feed. You are doing better at putting new foods in your mouth and trying them, hopefully soon we will have you snacking away!<br />
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You are developing well, we are continuing with our Soonercare and are getting stronger! We are putting you through your paces daily. Diaper changes we work on rolling. We practice sitting ourself up using our hands and reaching. We are working on tummy time over the boppy or with rolls and trying to show you that you can get yourself out of that predicament. We work on putting you on your hands and knees to get stronger, and even bearing weight through your feet and trying to get used to standing. We work on talking/babbling and even wanting to play in food or bring it to your face. Little by little we see improvements every day! We can't wait until you are eating better by mouth, it's so hard to be patient because it is such slow process so far. Praying for improvement in this area!<br />
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Our big development this month was failing a hearing test that was given by Soonercare. They come out to the house to follow up on hearing and reassess, and they tried for two different months to get accurate testing on your left ear. There was fluid on your left ear for quite some time. Finally the fluid was gone, but your test showed that you failed 3 out of 4 frequencies. We have our appointment tomorrow to be further evaluated.<br />
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This month you had your first Easter! Your first official family gathering. We have taken you on lots of walks, gotten you outside and in some fresh air. You are loving your new found freedom, and I can only hope that we can continue to give you more freedom and yet keep you well!<br />
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You have developed a severe attachment to me, and Daddy as well. If I turn my back on you and move around in the SAME room as you, you begin to cry. Leaving the room? Out of the question. I know this is a normal thing, but I can't help but think it's made a bit more severe after all you have been through!<br />
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We are so busy and so blessed by you. I had a surreal moment earlier at my in laws house. I was the only one inside, everyone else was on the back porch, sitting in the porch gliders and playing and I happened to glance out through the blinds and the sight took my breath away. I couldn't help but remember back to last summer when I was sitting in those same gliders after taking my once weekly hospital break to spend time with your big brother. You were still in the hospital after your first open heart surgery, still with lots of complications. I remember wondering if you were going to make it to enjoy a summer with us, and what it would be like. So when I saw that sight tonight, I had to stop and thank God and count my blessings. How lucky I am to be your mother, and for you to be here with us each day! God has really walked us through and I love the little reminders like that of just how far we have come!</div>
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Love you to the moon and back!</div>
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Mommy</div>
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Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com2tag:blogger.com,1999:blog-6217716983165330385.post-91390081483001976542014-03-27T21:39:00.001-05:002014-03-27T21:39:06.971-05:00Nine Months: A LetterDear Caysen,<br />
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Here we are, sitting in a hospital room in Columbus, Ohio approximately 9 days out from your second open heart surgery. Who would have thought that this is where our path would lead? Never in a million years would I guess we would have travelled this far, or ever had to step so far outside of our comfort zone.<br />
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This past month has been CHALLENGING. It started off with your brother getting RSV riiiiight before your surgery. If you were to have any virus they would have pushed surgery out, and you were a very sick kid yourself. You weren't tolerating any of your feeds, the amount of air regurgitation and vomiting you were doing on a daily basis was depressing. You had blood coming out of your G-Tube feeds and you were just miserable even on a slooooooow continuous feed. I'm unsure how we managed to keep you from losing weight, it was super tough. We sent your brother away for a week and I sanitized All! The! Things! to be sure that you wouldn't get sick. I held my breath and prayed you would stay well, and before we knew it, we found ourselves in the car on the way to Ohio.<br />
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You have been busy this month, you weigh about 14lbs and 13 oz, you are wearing size 2 or 3 diapers depending on if you are planning on dropping poop grenades. You wear size 6-9 month clothes but still have a smaller waist.<br />
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Since surgery we have changed our day feeds back to bolus. You are taking 140 mLs, 5 times a day and are working on increasing it. You are doing well with this, less air than before but still having some occasional issues. The main issue right now seems to be your stool. What is that stuff about?<br />
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A good few days before surgery you FINALLY started sitting up on your own. You still would topple over but you preferred to be upright. So adorable, I love that you like to be up and part of the crowd. Since surgery you have done even better and are pretty stable, I think sitting up on their mattresses in the cribs that are extra cushy really helps with that.<br />
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This month also brought about your first haircut. (Okay, maybe like your 2nd or 3rd haircut). You had a horrible combover going on and you needed your surgery mohawk. I must say, it really suits you well. You are super adorable and fierce, all at the same time.<br />
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Oh, Caysen, I can't thank you enough for all that you teach me on a daily basis about patience, trust and everything in between. This journey we are on has taken us so many places, meeting all kinds of amazing people caring for you, and learning everyones' story. You, Caysen, have an incredible story yourself, but as you grow older you will learn that you are not the only person out there. Everyone has a story, has a history or a hurt, something that they too have overcome. I hope that one day we will get to return the favor to some of these people as we have had so much good shared with us.m Whether it be through encouragement, meals, prayers, or compassionate care, we will pay it forward without a doubt.<br />
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This month was one of the most challenging for me emotionally. Handing you back over for surgery wasn't an easy thing, and I could only think of how God must have felt handing over his Son to die on the cross. You see, I wasn't handing you over to die, but to live. But that thought of giving you over and putting all my trust and faith in the Lord and letting it out of my hands, was so hard. As a Mom you want to control everything, and handing you over left things to be exactly the opposite. Such a good lesson to learn.<br />
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In the surgery waiting room that day, we made friends with a local couple who had a six year old having her first open heart, but she had a few other procedures as a baby. The family asked me, how I was holding up. Why wasn't I crying? I gave them my reasons, and explained God was going to take care of you. As they asked more questions about your condition and what that might mean for your future they said, "Aren't you sad? Isn't that hard for you knowing how his future may be tough?" And my answer is, yes and no. Of course it hurts, sweet boy, to think of all of your future challenges (But! look how far you've come!) At the same time, we are focused on TODAY. And the now, and each and every moment. If we get sad about what time we might not have in the future, I'll forget to enjoy this second. So? We won't worry. I can truly say Caysen, that going through something as difficult as that, was made better when leaning on Him. I hope that when your future does get tough, we can remember this lesson!<br />
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Just remember little C, God knows what is best for us, and has seen us through it all!<br />
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Love you to the moon and back,<br />
Mommy<br />
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<br />Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-57883717574608371532014-02-27T18:52:00.000-06:002014-02-28T07:39:24.903-06:008 Months: A Letter<br>
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Dear Caysen,</div>
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Oh goodness, what a month it has been. We are so thankful for another beautiful month with you, and this month marks you turning EIGHT months old! </div>
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You have kept us busy this past month, with continued appointments, feeding issues, and of course, being a happy little night owl (read: minimal sleep for Mommy!)</div>
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This month you weigh in right at 14 pounds and 8 ounces. We just upped you to size two diapers, and you are wearing six month and six to nine month clothes. Your height is around 25 inches and your kissable cheeks make you look like you are a chunky monkey.</div>
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Your hair is still long on top, despite another trim to keep it from falling in your eyes and face. Its looking blonder to me, but time will tell. Your eyes are still a darker blue, I've always thought they were closer to navy. </div>
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This month you have had lots of issues with your feeds. We put you completely on formula while I cut soy and dairy, and after a good 3.5 weeks we transitioned you back to breast milk. You have TONS of air in there - it's just insane. If we don't burp you before, during and after the feed, you vomit past your fundo, crying the entire time. You've had flecks of dried dark blood come back out in your feeds as well. As the month has progressed the flecks have turned into chunks, and they have gotten redder. As a result, we have started Zantac and Prevacid, and are hoping for things to smooth out in that area. In other news, just being on the breast milk you aren't gaining much, really hardly at all. But we want to get your tummy troubles sorted before making more changes. </div>
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You are smiling all! the! time! when you feel well, almost giggling. You adore watching big sister Pearl and you think your four legged friend is fascinating. You love to talk and scream and chatter right about 8pm, also your big brother's bedtime. It's simply adorable and I'm just glad you are around to chatter - so squeal away little brother! </div>
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We have had appointment after appointment this month, the best news being a clear EEG so we are weaning our seizure medicine. Yay! As soon as you get home from these appointments your germophobe Mom completely strips you down, everyone changes clothes, and you get a bath immediately. We have to keep you well, because as of your eight month birthday there is only 19 days until your next open heart surgery! We are trying to keep you away from your big brother who has RSV as of four days before this letter. We are no strangers to doing things the difficult way - this shall be no different. ;)</div>
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That was another major development this month, deciding on a surgeon. I have always been more than comfortable with doing the next surgeries here, as I have complete faith in the doctors here and their skill sets. I have always prayed along this journey for our steps to be led and guided in the right direction. Somehow, by turn of events, surgery was not possible in town, and after having your chart sent to two different hospitals for opinions, we picked the one that we felt we were being pointed towards. </div>
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You are getting stronger and better at tummy time. You can roll but stop as soon as you reach your sides, never completing the roll because why would you want to be on your tummy anyway? You still hate tummy time after all. You are getting stronger at sitting, but still need work with your lower back strength. </div>
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Caysen, one of my favorite times with you, is letting you sit on my lap to play, watching you grin, and kissing under those ears of yours. I absolutely love to hold you and calm you, and to feel you relax and gaze up at me is the sweetest. You are into grabbing and pulling my hair, and have started using your tiny little hands to touch my face. You are simply amazing, and looking down at you and seeing pink cheeks is nothing short of a miracle. </div>
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As frustrating as it can be, I love watching your routine before bed. Soon enough, I'll be missing having a tiny baby that would rather grin at me than sleep, so I try to soak it up. Once you get tired, you whine when held and want to be laid down. You fall asleep best laying on your right side, with your paci, in your rock in play. After a few minutes I can move you to your crib. You seem to have gotten used to this routine for some reason, and settle the best. I am not sure what will happen when you outgrow your rock and play, but I guess we will worry about that when we get there.</div>
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Oh Caysen, we are both damaged goods, and PTSD is no joke. I can't lay you on your back with strangers around without you bursting into tears afraid you're going to be poked. I can't move out of earshot from you during a feed, for fear you will cough, vomit and aspirate and you need to stay well. One bad feed with blood and air and we start to prepare ourselves for the worst, are you still allergic to the milk? Is something else wrong? It's never ending. We are both so fragile. But nothing compares to seeing you kick your feet and flap those hands around with the biggest dimpled smile when I approach. It makes it all melt away. You are such a little gift, and we are so blessed by you!</div>
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You are looking so big these days, and to think back on our journey so far - it makes each and every grin in our direction That. Much. Sweeter!</div>
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Love you to the moon and back,</div>
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Mommy</div>
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Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-9767823851691980452014-01-27T21:53:00.001-06:002014-01-27T21:54:52.940-06:007 Months: A Letter<span style="background-color: white; color: #222222; font-family: arial; font-size: x-small;">Happy 7 months Little C! </span><br />
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I can't believe it has been another month already, time flies so fast these days! We are getting ever closer to needing your next surgery, which makes Mommy a little antsy. Ah, who are we kidding, a LOT antsy! There are so many things to do, and there is so much unknown. Your Mommy is a planner if you hadn't noticed, so theres a lot to do! We had it narrowed down to two hospitals, Saint Louis Children's and Nationwide Children's Hospital. After lots of praying and discussion we decided on the surgeon at Nationwide. He seems to have the most experience with your type of defect and first open heart, so we feel the most comfortable with that surgeon.</div>
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This past month has been so busy. We ended 2013 with the loss of a very dear family member, your Great Grandpa Allen. While he only met you in the NICU, I am so glad that he did get to meet you. It was a bittersweet end of 2013 and beginning of 2014, saying goodbye to someone we dearly loved.</div>
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We were ecstatic to start 2014 with you AT HOME. But unfortunately that was short lived. Before we knew it - you weren't tolerating feeds, you had SO MUCH AIR in your belly that we couldn't get anything in. After sleeping with you on the floor in your room next to us (well - Daddy did), and getting NO sleep, we made the call to your cardiologist to check heart function. Our last hospital stay it was said that not tolerating feeds was heart related, so we went to go check that out, ASAP, as we were slightly worried (read: panicked) that something was going terribly wrong. You were given the all clear from the heart standpoint, but we couldn't stay home with you not tolerating your feeds. </div>
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Before we knew it we were back at the hospital in the same predicament we always are, with you being a super hard stick, no one able to get a line. We spent a few rough nights of them forcing pedialyte and you crying all night. Finally you got gut rest, got a line, they scoped, and found that you had a very "rashy" gut. After biopsies the results were consistent with a protein allergy. They started you on the most basic of all formulas and sent us home after a week with a sample can of formula and the flu. Yes, you read that right. We picked up some germs while we were there, and you tested positive for flu. Now that we have been two weeks on that formula we are just hoping your gut will heal up and tolerate feeds. You still seem to have ridiculous amounts of air that just breeds in there, so it's all very touch an go.</div>
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This month you are still barely on the growth chart at less than 1 percent all around. You weigh 13 lbs and 10 oz, you are 25 inches long, and your head is 34 cm. You are still wearing size 1 diapers, you are fitting into 6 month onesies, but are starting to get too tall for those. You hair is still amazingly puffy with body, and it still has curl to it most days. Your Daddy is still dying to trim it! You are sleeping so-so on your continuous feeds at night, you definitely have to be vented half way through, and you cry at times when you lose your paci or if you want to be turned. You still aren't taking anything by mouth, but we are trying to encourage you to put things in your mouth. (this is so backwards for germ related reasons!!). You enjoy your paci, you love chewing on things like my knuckles, washcloths in the bathtub, and stuffed animals. We are hoping that once we figure out your belly issues maybe you'll want to eat by mouth again!</div>
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You are doing better at tummy time. Even though we still do it inclined, you are definitely getting stronger. You have started to understand the point of your jumper and you love jumping around and playing with the toys. You have found your feet, and are attempting to take socks off some days. You are getting better and turning side to side on your back, and you are sitting up fairly well with assist. You have really started to notice Pearl, and you love to watch her. You are pretty happy go lucky, unless you are having issues with a feed or if your fur sister gets overly excited with her tail and whacks you with it.</div>
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You are down to 4 different meds right now. It's crazy, and almost weird to draw up only 3 at 8am and 3 at 8pm. It's a vast improvement from up to six each time!</div>
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We still find that we walk on eggshells with you. Every time you don't tolerate a feed, or are overly full of air in your belly, we get nervous. The last thing we want is you to get sick, or for there to be another heart issue. Again. You have made us far more cautious and concerned, and we find our conversations seem to always revolve around you, your feeds, your day, your attitude. Despite all this, you are our total joy. No matter how little sleep we get or how concerned we are, you flash us a little smile and you are forgiven a thousand times over! You can give us one heart melting coo and we are putty in your hands. We didn't sign up for this stress, sleep deprivation, and huge life changing decisions when thinking of you, but I know we would both say we wouldn't have it any other way. Nothing could make us love you any less, that's for sure, and we will always be there to fight for you, to back you up, and to encourage you. We love you!</div>
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As long as I'm living my baby you'll be, </div>
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Mommy</div>
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Dearest Caysen,</div>
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Can you believe we are here discussing your HALF BIRTHDAY? Oh, what a half a year it has been.</div>
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This past month you have spent at home after being discharged from the hospital the day after Thanksgiving. You have had some follow up outpatient appointments but nothing overly exciting and it has been SO NICE. Thank goodness for shiny new stents in your heart! We spent your first Christmas with you AT HOME. Granted, you slept through most of the family Christmas and you stayed away from extended family for germ reasons, but you were HOME! :)</div>
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This month you weigh about 12 and a half pounds, depending on the scale you are weighed on. You have tons of hair centered up top, it is still brownish, but lighter than when you were born. Your eyes are a navy color still - I'm wondering what color they will be! You wear size one diapers, size 6 month clothes for length. You are taking about 3 ounces of fortified breast milk by G Tube only since you decided taking a bottle was for the birds. Your day feeds are three ounces over the course of 2 hours and you get an extra long night feed.</div>
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You sleep from about 1030-730 on your continuous feed, wake up for a short period and then sleep again until almost 11. You are not so good at napping - and tend to want to be held to nap. Of course we are so busy hooking and unhooking you from feeds all day that once you are asleep you rarely stay asleep. 30 minutes is a good nap for you, but it's not uncommon that you would stay awake for 3-4 hour periods then get overly tired (read: fussy).</div>
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You have had weekly visits with Sooner Start and are getting stronger in that area. You are spontaneously reaching better - you just don't seem overly motivated for anything. ;) You still don't roll, and you hate tummy time with a passion. You still don't have the back of the neck muscles to really hold your head up - thats what tummy time will help with. But you haaaaaaaate it. Overall your neck control is improving and we've been working on trunk control. It just seem so hard to make progress in that area when you don't take your feeds well and want to continually gag/wretch during them. You are getting fed ALL the time making therapy time difficult! Not to mention the cord we are attached to when you are getting fed continuously. But - we will get there. Eventually.</div>
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You still seem to have issues with air in your belly - and when you gag because of too much air in there - you will vomit past your fundo. This happens usually daily, if we can't get to your button fast enough. It's furstrating as we can tell it's painful for you, and yet there's nothing we can do. Plenty of times we can have you hooked up to vent - yet you will still vomit past the fundo despite having your Mickey open. Its awful to watch. :(</div>
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On Christmas Eve you decided you wanted to add blood to your poopy diapers. We are no stranger to this - and are changing things up in hopes to be able to troubleshoot and keep you at home instead of in the hospital again for the SAME thing in the past - where all they will do is send it off to be tested and confirm that yes, it is indeed blood. Oh, little c - I am so weary of this. So tired of hospitals, doctors, nurses and the little surprises you throw at us all the time. Is it so much to ask for peaceful time at home ya lil turkey?</div>
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We still have no idea what the future holds. When will your surgery be? Where? How will you handle it? How long will you be in the hospital? But all of these questions are trivial to ask repeatedly, despite that being such a human thing to want to do. I continually find myself remembering to pray for our steps to be directed. I don't know the answer to those questions, no one here does. But, I know that they have already been planned out and we just need peace to go where we are supposed to and to deal with what is handed out. </div>
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The other day I was driving to work, and often times I use that time to get lost in thought and prayer. I was praying for you, for what is to come, as I was driving through some really thick freezing fog. It was blanketing the cars, the grass, and you couldn't see anything until you were right up on it. I passed through one intersection and before I knew it, it was COMPLETELY clear, all around me. It was such a strange thing, to be lost and without clear direction in the fog, to being able to see really far ahead, and clearly - all in a split second. It was so funny that I was praying for you when I realized suddenly the fog was gone. God was winking at me in that moment, reminding me that I may be confused about your bloody stools, about your heart surgeries, but it will all clear up. We will have direction. It's such a beautiful promise. </div>
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Oh Caysen, your six months here on this earth have been intense to say the least. You have spent 100 days inpatient in your short 184 days of life. 54 percent of your days in the hospital! But you know what? 2014 is going to be our year. Our year for growth, promise and healing. We are going to learn that much more this coming year, go through even more ups and downs, but we rest in the comfort knowing we will be taken care of. </div>
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I was rocking you the other night in your room after a particular fussy time - and it brought tears to my eyes. Tears because I know you are going through so much, and yet you can't tell us what hurts. Tears because you are so little, yet so big in so many ways. Because I realize how swiftly these stressful six months have gone, and how my little baby is growing. And I am SO grateful that you are here to grow! So thankful to reach a half birthday with you. I will forever be grateful for each smile you give me - each day, each moment. Love you bub!</div>
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Jesus Loves You Little C, and so does your family!</div>
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Mommy</div>
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Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com2tag:blogger.com,1999:blog-6217716983165330385.post-61790602170807640652013-12-20T22:29:00.000-06:002013-12-20T22:29:00.641-06:00Half A Heart <span style="color: #333333; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 17px;">Another tearjerker of a heart poem/story while we are at it: Author - Unknown.</span></span><br />
<span style="font-size: x-small;"><br style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; line-height: 17px;" /></span><span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus "I don't want to leave, I like it here, and I will miss you". He reassures the scared little angel that everything will be okay, and that he is just going for a visit. He is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work". But the little angel is still a little scared. He asks,"Will I be okay with only half of my heart?" Jesus replies,"Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart". "Enjoy your time with your family, play and laugh everyday." "And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."</span>Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-1386721549112172412013-12-18T06:05:00.000-06:002013-12-18T06:05:00.448-06:00What's it like?<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif;"><span style="font-size: x-small;"><span style="line-height: 17px;">I saw this poem the other day and had to post it as it is so perfectly said! </span></span></span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;"><b>What is it like to have a child with a CHD?</b></span><br />
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<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's Lasix, Aspirin, Enalapril....</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's wondering...Lord what's your will?...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's monitors and oxygen tanks...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's a constant reminder...to always give thanks...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's feeding tubes, calories, needed weight gain...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the drama of eating...and yes it's insane!</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the first time I held him...(I'd waited so long)</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's knowing that I need...to help him grow strong...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's making a hospital...home for awhile...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's seeing my reward...in every smile.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's checking his sats...as the feeding pump's beeping...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's knowing that there... is just no time for sleeping</span><span style="color: #333333; font-family: lucida grande, tahoma, verdana, arial, sans-serif; font-size: x-small;"><span style="line-height: 17px;">…</span></span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's heart caths, x-rays and boo boos to kiss...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's normalcy...I sometimes miss...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's asking...do his nails look blue?</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's cringing inside... at what he's been through.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's dozens of calls to his pediatrician...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">(She knows me by name...I'm a mom on a mission!)</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's winter's homebound...and hand sanitizer...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's knowing this journey...has made me much wiser.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's watching him sleeping...his breathing is steady...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's surgery day...and I'll never be ready.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's handing him over...( I'm still not prepared...)</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's knowing that his heart... must be repaired...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's waiting for news...on that long stressful day...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's ...praying...it's hoping...that he'll be okay.</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the wonderful friends... with whom I've connected...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the bond that we share...it was so unexpected...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's that long faded scar... down my child's small chest...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's touching it gently...and knowing we're blessed...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's watching him chasing...a small butterfly...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the moment I realized...I've stopped asking...why?</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the snowflakes that fall...on a cold winter's day...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">(They remind me of those...who aren't with us today)</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's a brave little boy...who loved Thomas the train...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">Or a special heart bear...or a frog in the rain....</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's the need to remember...we're all in this plight....</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's their lives that remind us... we still need to fight!</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It's in pushing ahead amidst every sorrow...</span><br />
<span style="background-color: white; color: #333333; font-family: 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 13px; line-height: 17px;">It is finding the strength to have hope for tomorrow.</span>Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-73264103246130674842013-12-14T05:52:00.000-06:002013-12-17T22:24:32.559-06:00Caysen's Dedication Letter<span style="color: #222222; font-family: arial; font-size: x-small;">Dear Caysen,</span><br />
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Tonight we are dedicating you at church. A night we weren't sure we would ever have the honor to experience. </div>
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Honestly, your Dad and I debated about whether this timing was wise or not. You are in a very fragile state - not tolerating your feeds well, and with your heart in a "band - aided" state that if you were to get sick, we would likely be back in the hospital after just discharging 16 days earlier. Those germs, those people with all their new germs, make everything so risky. But? We don't know what the future holds or where you will be during the next dedication. </div>
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We decided this was far too important to us. We want to make this statement before our friends and family, we want to commit to raise you in a Godly home, teaching you about Christ and His love for YOU, and most importantly giving you back to Him.</div>
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And you sir, he loves you so very much! He has proven His love for you time and time again in your short five months. From assisting the doctors to save you on your third day of life, to countless surgeries, hospital visits, procedures and interventions. You have been through more than most children this age, and you are still here today by His grace.<br />
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Caysen, your Dad and I had such big plans for you. We had mapped out the way we were going to do things. But God had different plans. Bigger plans. He has great things in store for you. I have learned not to plan ahead much further than tomorrow, as God always has a different plan. But, it's a BETTER plan. These days I don't want much for you, besides for you to remain with us. I don't care what you do in your future, or what you are or are not capable of. Honestly, I want the best but when it comes down to it, I don't care if you grow up to be a successful businessman or a cook flipping burgers at McDonalds. I want you to have joy and to know Him, and all that He is. As long as you have that, I know you will be wealthy in more ways that you ever could need.<br />
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I want you to know on this night that we are dedicating you, how much we have learned from you. (And not just in medical terminology and diagnoses!) You have taught us more in your short time here with us than we have learned in our entire lifetimes. We have grown closer together, we have learned to seek and ask for help, and most importantly how to walk the closest we have ever been with the Lord. We can't thank you enough for strengthening our bond, our committment towards our family and most importantly our faith. We have learned that there are so many highs and lows, that sometimes it's a sickening roller coaster. But you would never appreciate the highs, if it weren't for those stomach dropping lows. Besides, it can be lonely at the top. But when you are low and leaning on Him, you find much more comfort than you realize.<br />
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I was thinking about your name the other day. We really didn't decide until the week before you were born if you were going to be a Corbin or a Caysen. When I go back and look up the meaning of your name, I find a variety of answers. "A variation of Casey", "pure" and "vigilant one". The last two particulary stick out in my mind. You are so young, so pure, so innocent and have been through so much. We have spent countless hours in the hospital, awake at night, praying and keeping vigil over you. The more I look back on it now, your name is just perfect and completely fitting for you.<br />
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I'll close with your life verse. It was hard to choose, as you have SO MANY verses that I use to think of you. The entire passage from Jesus Calling on your day of birth is one of my FAVORITE ever, one of the best reads that I go back and look on every time something comes up and I need encouragement. But I didn't choose those verses as your life verse. I chose the verse given to me by my friend Malissa, one that is fitting as it is the Psalm of your birth DAY and birth YEAR. I have included the verse after - because fittingly verse 14 discusses the heart. 2014 Is going to be a great year!<br />
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I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. (Psalm 27:13, 14 NIV)<br />
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We love you so much Caysen. We are beyond thankful for you and have been so blessed by you in countless ways. You by far are the most difficult, challenging and yet rewarding thing we have ever been given the task of caring for. We love you more than we could ever put into words.<br />
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Love you to the moon and back!</div>
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Mommy and Daddy</div>
Court3neyhttp://www.blogger.com/profile/08369660876783109955noreply@blogger.com0tag:blogger.com,1999:blog-6217716983165330385.post-90302656101552677572013-11-28T09:49:00.002-06:002013-11-28T17:24:35.053-06:00Five Months: A Letter<div style="color: #222222; font-family: arial; font-size: small;">Dear Caysen,</div>
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Oh sweet boy. Daily you keep us on our toes. I start writing these month updates early, so that I can post them on time. As I started writing this one, I couldn't help but question WHERE and WHAT your next steps are going to be.<br>
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This month has been stressful. You spent your first Halloween inpatient but got discharged from the hospital on the 2nd of November, and we happily took you home after being treated for what we thought was NEC. You tolerated your feeds great and you were doing well. You lasted at home for 8 days. The first five were fantastic! You took your feeds by mouth, (Even finishing entire feeds!!), you took a bigger volume and in faster time and you tolerated it great. Then suddenly it went down hill and oh so fast. So fast that we had you back in the ER on a Sunday. What is it with that place and Sundays? I hate the ER, hate it. They didn't do the right thing the first time we were there, and I'd venture to say they didn't this time either, although this time was not near as severe as the first.<br>
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Anyway, in the span of two days, they poked the living daylights out of you trying to start and IV. You were poked in the head, hand, arms, legs, groin. At least 40 times or so. One of the nurses there, referred to it as "the massacre", which it really was the truth! The Child Life Specialist who gives out the Beads of Courage gave us 50 black beads to represent each poke, she wanted to be sure we covered them all. That's insane. Finally you had a heart cath and they got a central line.<br>
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The cath showed your pressures were questionable. The next day you got crankier and more upset. Before we knew it - you were in heart failure and they were intubating to give your heart a rest. Your lactic acid levels that are supposed to be around 1, were almost to 12. You were VERY sick, and it happened so fast.<br>
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I remember holding you outside in the sun in the unseasonably warm weather, that last day that we were home. Your Dad was putting up a string of Christmas lights, we were soaking up the gorgeous weather. I noticed the next door neighbor smiling at me as I held you in my arms, guiding your Dad to hang them straight. I looked down at you, knowing we were taking you in to the ER in just a few minutes, as you had missed your last feed. But he needed to finish up, and I needed that extra long warm cuddle in the sun. It's bittersweet, to remember those moments so vividly, and remember exactly what I was thinking during the moments of uncertainty.<br>
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Your stats vary this month. You are weighing in at 11.5 pounds or so, depending on how much fluid you are retaining. You are 23 inches, your hair is impressively long and people always ask if you were born with that much. The answer is no, but what you haven't grown in weight wise you managed to make that up in hair. You were wearing 3-6 month clothes - although now with all your lines and wires all you wear is your size one diapers. Your eyes are still dark blue. I think your awesome hair has lightened some at the roots, but we shall see. </div>
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We sure had a roller coaster of a month. Going from being told you may need a transplant, to being told we have a few months before our next move (which is likely surgery), its a pretty wild ride. Boy, you like to keep us on our toes!</div>
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My favorite part about you is your dimpled smile. Its been a bit since you have felt well enough to show it, but it's starting to come back! I am so proud of how strong you are. In your five short months you have taught me more than I could have ever bargained for. I've learned about trust, strength and mainly patience. Who knew you were going to be such a good teacher?!?</div>
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This journey gets more interesting as each month passes, with the highest of highs and the lowest of lows. I want off the roller coaster so! bad! But at the same time, if that took me away from you - then I'll stay on for the ride. Someone just find me a barf bag, would ya? ;)</div>
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I am beyond thrilled that our steps continually are directed in the ways we should go. So often things seems questionable or scary but if we pray for clear direction, we are always clearly led. God is good Caysen!</div>
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We are hoping to be able to take you home for a bit. We have big plans to strengthen you, feed you, and most importantly cuddle the snuggles out of you. We can't wait, and despite all the unknown we still have to just rest and know that it will get taken care of when it comes. </div>
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Love you to the moon and back,</div>
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Mommy<br>
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