tag:blogger.com,1999:blog-88623102745547173282024-03-12T20:17:46.077-07:00Our Heart WarriorCal LouisAnonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8862310274554717328.post-2258854790296863452013-10-23T13:18:00.000-07:002014-01-08T06:50:47.793-08:00Cal's Journey<div style="text-align: center;">
Well, it's officially been a year since Cal's diagnosis. I do not know if I'm emotionally ready to tell his story, but I don't think I'll really ever be, and according to my dear friend, Cara, I don't have to be. So here it is. I'm hoping that this story not only helps me but helps others, raises awareness, and gives Cal a clear explanation of his scar and the extraordinary journey he was on...</div>
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My pregnancy was very similar to Cal's older brother, Liam. The only real difference was Cal's size. Cal was estimated to weigh around 7 to 8 pounds at birth. Two pounds less then his brother. Everything always checked out well with Cal right from the beginning, even on his birth day. 7 lbs 7 oz, 21 inches, February 16, 2012 gave way to a perfect baby boy. We couldn't be anymore in LOVE.</div>
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As we were leaving the hospital, the local pediatrician mentioned she wanted us to make an appointment in two to three days for a weight check. I asked my husband, Brad, to take Cal to the appointment as I was recovering at home. Brad came home a very proud Dad. His weight was on the rise. Brad mentioned that the doctor noticed he was a little jaundice and told him to keep an eye on it. In the next few days, Cal seemed to get more yellow and slowly I started noticing other symptoms, unsure if they were related to jaundice. I felt as the hours passed I became more and more obsessed with EVERY. LITTLE. THING: <i>His skin does look really yellow. Oh, but in this light it doesn't. I wonder what it looks like in another room? By the window? Gosh, he's sleeping a lot. Is that normal? Does he have rapid breathing? His heart seems to be beating really fast, I think? Maybe that's normal. Where are my books? Maybe I should call the pediatrician. Wait, was his lip just blue? Lets go into a different light. The whites of his eyes are definitely yellow. And his heart IS beating really fast! I need to start timing it. Ok, he just woke up. Good. Relax. Take a deep breath, Mommy. Ugh, why isn't he eating? He just fell back to sleep. I think something is wrong. Am I overreacting? Where is the computer! BREATHE! </i>And so, the call was made. I started explaining everything I noticed in the last 24-48 hours to the pediatrician as he took out his stethoscope and placed it on Cal's heart. "He has a murmur?" he asked in a shocking, puzzled kind of way.<i> "</i>Not that I'm aware of" I said. He shook his head confirming there was indeed a heart murmur present. He then tested his oxygen level. After a few moments of silence and a concerned look on his face he placed Cal in my arms "I can't send you home. You need to head to the emergency room immediately. I'll be right back." <i>WHAT! Can this really be happening? What is going on?! </i></div>
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Tests after tests were taken. Everything was coming back normal and we were sent home after six hours to what the doctor thought was an innocent murmur. I phoned my brother, an ER doctor, to tell him the news. He suggested we get an echocardiogram done, an ultrasound of the heart, just to be sure. I then called the pediatrician, who was very surprised we were released, he also stated we need to get an echocardiogram done and was disappointed this wasn't done at the time.</div>
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Back to UH Rainbow Babies and Children's Hospital. A day that will never be forgotten. The day our world got turned upside down. Where the words "This is what a normal heart looks like; this is what <i>your</i> child's heart looks like" rings in my head repeatedly to this day. Where the term <i>heart failure </i>got introduced as I sat in a chair with my husband's hand clutched to my thigh. Everything the cardiologist was explaining that day was a blur. All I could do was stare at him in disbelief, wanting to ask him if my baby was going to live, but too afraid to hear the answer. </div>
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Cal's diagnosis: two Congenital Heart Defects. A small atrial septal defect (ASD) and a large ventricular septal defect (VSD), a hole between the pumping chambers of the heart. Treatment: Open Heart Surgery. A patch will be placed over the ASD and VSD to repair the holes.</div>
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We needed to get Cal to 13 lbs before we could undergo surgery for optimal results. At this point it was mentioned that during our battle to the proper weight, he will enter heart failure at 4-6 weeks of age. He will use every ounce of energy to eat. He will begin to suck, get tired, then fall asleep; awake very hungry, begin to eat, and then fall asleep exhausted again. Once he loses his sucking ability, due to weakness, we will insert a feeding tube through his nose. He will have weekly weight checks and biweekly echocardiograms, EKGs, and doctor appointments. We were not to be outside of a 20 mile radius of an emergency room or cardiologist. Our Little Peanut, 20 days old, about to embark on a journey that was unknown to many, including myself. All we could do was wait, let time take its course and pray that God has a plan for us.</div>
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Weeks and months passed. There were ups and downs along the way but Cal was beating all the odds and gaining an ounce a day without the use of supplements or a feeding tube. He surprised us all, especially the doctors. Although he was in mild stages of heart failure and needed medicine twice a day to regulate his breathing and to remove the extra fluid from his lungs, it was thought, at one point, he may not even need surgery. There was a small amount of tissue beginning to cover the VSD. That ounce of hope was all we needed to keep our spirits up. Cal continued to fight. He was determined. That's his style: he never gives up. </div>
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As tests continued, news started coming in unfavorable. Our cardiologist, Dr. Manish Bansal, noticed that his aortic valve was beginning to leak (regurgitation). An appointment following gave way to more discouraging news. The tissue that was beginning to cover the hole has caused more problems then good. His aortic valve has now prolapsed due to the amount of pressure the hole is putting on the valve. The leakage has moved from trivial to moderate. A conference has been called among a board of doctors to discuss Cal's case and to determine which direction we go from here. It is unanimous. Since Cal has reached the appropriate weight, the doctors and surgeon conclude surgery is a must and needs to take place within three weeks before the prolapse gets worse and the valve becomes permanently damaged. They will be closing the VSD to take the pressure the hole is causing off the valve. They will close the ASD as well. Everything we were trying to avoid for so long is now inevitable. Part of me was relieved. Part of me was as scared as one can be.</div>
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In the days leading up to surgery I began preparing myself. I viewed pictures of other patients in similar situations so I knew what to expect when seeing Cal for the first time post operation. I researched, read blogs, enlisted in prayer groups, signed up with the American Heart Association, met the surgeon, asked questions, and reviewed the guidelines for what to expect during and after surgery. As much prepping as I did, we could never be fully ready. </div>
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August 8, 2012: on our way to UH Rainbow Babies, again. A drive that was too familiar for liking. Although, this time, I didn't know when we would return home as a Family. Once we arrived, we were escorted to pre-op where we were able to dress Cal in his gown and give him our best wishes before the anesthesiologist came in. I held him in my arms one last time. I didn't want to let him go. For 5 1/2 months I cared for Cal, I was the only one I trusted, and even though I knew my job was done, I had to hold on just a little longer. After a short period, Brad put his hand on my shoulder letting me know they were ready for him. The time has come for me to hand him over. To leave it to God's hands and the surgeon's to make his heart complete. To let FAITH take over.</div>
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Surgery was to take 6 hours.<i> 6 hours.</i> 6 hours to stare at the clock and wonder. 6 hours to pace. 6 hours of making small talk when your mind is else where. 6 hours of listening to the waiting room's door open and close (unsure if I wanted it to be the nurse practitioner). 6 hours to pray. 6 hours to think about every complication that could possibly happen. 6 hours of waiting for news that will change your life forever.</div>
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At 11:00 a.m. we received an update. The surgeon, Dr. Peter Kouretas, is 75% done. Cal's heart is off the cardiopulmonary bypass (heart and lung) machine and beating on its own. </div>
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Thank you Spirits. </div>
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Thank you God!</div>
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Two more hours passed until the repair was complete. Brad and I were finally able to meet with the surgeon, my forever hero, he delivered nothing short of good news. Cal's heart was on the bypass machine for less then an hour, which is unheard of. Therefore, his body did not go through significant trauma. Since patching the ASD and VSD, the prolapse self-corrected and the aortic valve regurgitation moved from moderate back down to trivial. Best outcome possible. My own heart skipped a few beats in that moment. Even though I knew we weren't in the clear yet, since complications could still arise, I could feel myself breathing just a little bit easier. As the nurses were finishing up with Cal and transferring him to the PICU, we delivered the good news to our family and friends.</div>
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When it was time for us to be with our Precious One, one of the doctors walked us to him. When I first laid eyes on Cal an overwhelming amount of pride filled me. She stated "Doesn't he look amazing!?" And he did. He <i>really</i> did. The bravest man I ever met.<br />
I couldn't be ANY prouder. </div>
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<span style="font-size: x-small;">(Surgeon)</span></div>
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Cal was in the PICU for three days. During that time minor complications took place. It took quite a while for his breathing to stabilize and his oxygen level to reach 100%. Also, it was thought he had fluid forming around his right lung. We were preparing for another surgery to have a third chest tube put in to drain the fluid but it turned out to be a collapsed lung. He lost more blood than what was expected and had to have multiple blood transfusions. There was blood in his urine, as well. However, all things considered he was doing remarkable. The surgeon trusted that he was able to recover completely on his own without any lines to help. So, slowly, they began to remove the tubes and wires. Everyday he got stronger and we were discharged within four days. <br />
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As we were packing up our things to come home, I began asking the doctors questions (quite common for me). I am not sure if I had a worried tone in my voice but one of the doctors came up and knelt down beside me as I was sitting with Cal. He gently placed his hand on Cal's heart and said "Your child. He fine. He okay. He normal." That was the first time we have ever heard those words. It sure felt good!</div>
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Recovery time at home was 6 weeks.</div>
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Cal fought a battle for over 5 months. Every day was a challenge.</div>
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And now, he is struggle free.</div>
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Our Heart Warrior TRIUMPHED </div>
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<span style="font-size: x-small;">(Dr. Bansal)</span></div>
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Post Surgery: Check-ups have moved to once a year. Cal's aortic valve continues to leak slightly, along with his mitral and tricuspid valves, which will be the case throughout his life. It has recently been brought to our attention that he has had aorta dilation since he was 2 to 3 months of age. It currently is of no concern but will be monitored, with a possibility of not being able to play any contact sports. Because of his surgery, his chest caves outward but will flatten as he gets older. They were unable to patch all of the VSD due to being hard to see since there was no blood pumping through the heart at the time of repair. Cal's heart murmur is still present and it is hoped that when he is 3 or 4 years old his own tissue will cover the remainder of the hole and patch. His only restriction is not being able to enlist in the military.</div>
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What I once thought as the most devastating news, news that brought countless tears along the way, has now become my greatest treasure in life.</div>
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I am honored to be a <i>Heart Mom</i>.</div>
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<span style="font-family: Verdana, sans-serif;">"You were given this life because you were strong enough to live it."</span></div>
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<span style="font-size: x-small;"> -<span style="font-family: Verdana, sans-serif;">unknown</span></span></div>
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Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com4tag:blogger.com,1999:blog-8862310274554717328.post-45808856108010023322013-10-05T06:39:00.000-07:002014-02-10T10:55:10.459-08:00Mended Little Hearts<div align="center">
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October 5, 2013<br />
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We had a fall picnic to honor our heart kiddos. We also came together to share stories, form a bond and just have fun</div>
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February 8, 2014</div>
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Since February 7th kicks off CHD awareness week, we all eagerly wanted to have another gathering. So, we opened up our home and welcomed our new heart family for pizza and special times. It was, indeed, a memorable night.</div>
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Liam made heart crayons the night before to share with his new friends</div>
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Joy Jars were donated to all the kids by a little girl with Cancer to remind them to keep fighting and to never give up. </div>
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<span style="font-size: x-small;">(I can't get enough of this photo and all the kids. Just AMAZING!)</span> </div>
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Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com0tag:blogger.com,1999:blog-8862310274554717328.post-6187848925675030242013-09-10T13:07:00.000-07:002013-09-28T19:02:41.636-07:002013 Heart Walks<div style="text-align: center;">
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<span style="font-size: large;"><strong>Northern Ohio Congenital Heart Walk</strong></span><br />
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September 7<br />
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The much anticipated UH Rainbows and Cleveland Clinic heart walk has come and gone. Too quickly. I sort of wished I could have put the day on pause. But then again I'm reminded that we should never look back and keep pushing ahead. And, I have a pretty good suspicion that this will be our best year yet. With that being said I am truly thankful for the memories made and the people who made the day as special as ever for our Heart Warrior. Not to mention those that donated to help others, such as Cal. </div>
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We raised 2,250.00!</div>
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<span style="font-size: x-small;">(Our Cleveland Cardiologist)</span></div>
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<span style="font-size: x-small;">(My Brother and 2nd opinion Doctor)</span></div>
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<span style="font-size: x-small;">(Cal fell asleep just before the walk began. Daddy took the honors of carrying him)</span></div>
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<span style="font-size: x-small;">(Surgeon)</span><br />
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Let The Walk Begin!</div>
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<span style="font-size: x-small;">(The walk wouldn't be complete without some football along the way)</span></div>
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<span style="font-size: x-small;">(There was nothing better then watching Brad carry Cal. He soaked up every second too. </span></div>
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<span style="font-size: x-small;">And why wouldn't he?!) </span></div>
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After the mile walk, refreshments and entertainment began. Cal decided to wake up and grace us with his presence. He was a little confused why we weren't walking. He was READY!</div>
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<span style="font-size: x-small;">(Our Heart Hero)</span></div>
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Today was a very special day for Brad and I. As we continue to struggle with Cal's CHD, we are reminded how precious life is. Not a day goes by that we don't focus our attention on what is most important in life. Too <em>not sweat the small stuff</em>. </div>
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One glance at Cal (and Liam) and all is right with the world.</div>
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Thank you to all who made this day possible.<br />
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<span style="font-size: large;"><strong>Appleton (Fox Cities) Heart Walk</strong></span><br />
<strong><span style="font-size: small;"></span></strong><br />
September 14<br />
<strong><span style="font-size: large;"></span></strong><br />
We had a hard time deciding if we wanted to attend the local walk (put on by the American Heart Association) after just coming back from Ohio, sicknesses and all. At the last minute, we registered, and joined the Mended Little Hearts team. There is something to say for being among other heart families and their warriors. I felt honored and seeing Cal with his heart buddies made every minute worth it. </div>
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<span style="font-size: x-small;">(Don't they look thrilled?!)</span></div>
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<span style="font-size: x-small;">(Superheroes)</span></div>
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<span style="font-size: x-small;">(Heart Moms and our Survivors)</span></div>
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<span style="font-size: x-small;">"It's not about your scars...</span></div>
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<span style="font-size: x-small;">It's about your Heart."</span></div>
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<span style="font-size: x-small;"> -unknown</span></div>
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Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com0tag:blogger.com,1999:blog-8862310274554717328.post-63285705814093373622013-07-28T08:31:00.000-07:002013-09-28T19:26:09.641-07:001 Year Heartiversary<div align="center">
<span style="font-family: inherit;"></span><br />
<span style="font-family: inherit;">A Day to Celebrate</span><br />
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<span style="font-size: x-small;">(Our Gift to You)</span><br />
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<span style="font-family: inherit;">Happy Heartiversary Cal!</span><br />
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In it. Together.</div>
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<span style="font-family: Verdana, sans-serif;">"God gives his hardest battles to his strongest warriors."</span><br />
<span style="font-family: Verdana;"> <span style="font-size: x-small;">-unknown</span></span><br />
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Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com3tag:blogger.com,1999:blog-8862310274554717328.post-22432039254549154462013-06-17T12:51:00.000-07:002013-08-02T06:39:41.166-07:00Full CircleIn the weeks leading up to Cal's heart surgery, I viewed pictures of other babies, dealing with a similar situation, to help me cope with what was before us. On occasion I would find a picture of that same baby two years later: playing, energetic, healthy, full of life, with not a care in the world. I would always pause at those pictures and stare, mostly wonder. It gave me hope. More importantly, it gave me reassurance. And now, 10 months later, I view another child. Filled with joy, laughter, and happiness...<br />
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<span style="font-size: x-small;">(16 months)</span></div>
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<span style="font-family: Verdana, sans-serif;">"I've seen miracles happen. Silent prayers get answered.</span></div>
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<span style="font-family: Verdana, sans-serif;">Broken hearts become brand new. That's what faith can do."</span></div>
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<span style="font-family: Verdana;"> <span style="font-size: x-small;"> -unknown</span></span></div>
Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com0tag:blogger.com,1999:blog-8862310274554717328.post-78507650458553214742013-03-06T12:33:00.000-08:002013-08-02T06:39:23.867-07:006 Months Post Surgery<div style="text-align: center;">
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Doing Fabulous!</div>
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<span style="font-family: Verdana, sans-serif;">"Be strong when you are weak, brave when you are scared, and HUMBLE WHEN YOU ARE VICTORIOUS."</span></div>
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<span style="font-family: Verdana, sans-serif;"> <span style="font-size: x-small;">-unknown</span></span></div>
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Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com1tag:blogger.com,1999:blog-8862310274554717328.post-71727358290795470092013-03-03T14:11:00.000-08:002013-07-28T12:51:07.113-07:003 Months Post Surgery<div class="separator" style="clear: both; text-align: center;">
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Full of Life</div>
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<span style="font-family: Verdana, sans-serif;">From every wound there is a scar, and every scar tells a story. </span></div>
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<span style="font-family: Verdana, sans-serif;">A story that says "I Survived."</span></div>
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<span style="font-size: x-small;">-<span style="font-family: Verdana, sans-serif;">Craig Scott</span></span></div>
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Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com0tag:blogger.com,1999:blog-8862310274554717328.post-4477722461126267732013-02-28T13:17:00.001-08:002013-08-02T06:40:44.672-07:00Timeline<div align="center">
<span style="font-size: large;">2012</span></div>
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<strong>February 16th</strong></div>
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My precious baby arrived at 5:49p.m. at Akron General Hospital, Akron Ohio. 7lbs 7oz. 21 inches. So calm. So quiet. Sweet as a button. Cal Louis Smith was perfect in every way. All LOVE. Left hospital (2/18) with jaundice level at 6 and weight measured at 7lbs 1oz. Recovery in and out of hospital was speedy.</div>
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<strong>February 21st</strong><br />
Brad took Cal to Kids in the Sun, Strongsville Ohio, for a weight check. 7lbs 4oz. Started to gain weight :) Doctor mentioned he was slightly jaundice - at a level of 14 or so. Told to keep an eye on it.<br />
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<strong>February 25th</strong><br />
Really started to notice yellowing of the eyes and would sleep 23 hours a day, everyday. Something seems unusual.<br />
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<strong>February 26th</strong><br />
Cal looks yellow, sleeps all day and night. I feel he has rapid breathing 100% of the time. Sometimes I catch a glimpse of blue around his lips. His urine seemed a different color??<br />
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<strong>February 27th</strong><br />
Made an appointment with pediatrician today. Took Cal in. Dr. Golonka was very concerned. Suggested heading to the emergency room at Rainbow Babies and Children Hospital in Cleveland for:<br />
<ul>
<li>low blood pressure</li>
<li>low oxygen level</li>
<li>blue around lips and fingers</li>
<li>jaundice</li>
<li>heart murmur </li>
<li>fatigue</li>
<li>rapid breathing</li>
<li>increased heart rate</li>
<li>poor eating within last 24 hours</li>
</ul>
ER room - things checked out okay. Oxygen level was 97 out of 100. Blood pressure was normal. x-ray of the heart was slightly enlarged, jaundice level was high but not high enough to admit under a light. The ER doctor believes it is due to breastfeeding. Was told to continue nursing and it will get better. Breathing was at 63 times a minute (normal average is 30-40). Never admitted and was sent home after he had a normal feeding. Took samples of his eyes (a little oozy) which came back normal along with the blood work taken.<br />
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<strong>March 2nd</strong><br />
Two week check-up. Cal weighed 8lbs. An echocardiogram was set up back at Rainbow Babies to see why Cal has a heart murmur and what is causing it. Doctor mentioned most murmurs go away after a year or so. Cal was looking a lot better. Still sleeping a lot though<br />
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<strong>March 7th</strong><br />
Echocardiogram at 3:00p.m. Met Dr. Manish Bansal. It was found that Cal has two heart defects. VSD and ASD. VSD is very large with a possibility of open heart surgery to close the hole. ASD is of little to no concern. Dr. Bansal explained to us the possible side affects of a VSD. Very scary and sad. However, we know Cal's heart was made of gold. He is such a lover! We mentioned that Cal continues to have rapid breathing (non-stop, about 70 times a minute) but otherwise is doing good. He reviewed with us what will happen in the next few weeks. Goal is to get Cal to 13lbs, as of now he is 8lbs 6oz.<br />
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<strong>March 19th</strong><br />
Went to Akron Children's for a second opinion with Dr. Bockoven. He found the ASD and VSD as well but mentioned tissue on one side of the hole of the VSD that may make the hole smaller. We decided to stick with Dr. Bansal since we felt he could give Cal the best care possible. Cal continues to brighten up my world. The love I have for him is undeniable. He melts my heart in so many ways. Such a sweetheart.<br />
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<strong>March 20th</strong><br />
Second appointment with Dr. Bansal at Rainbow Babies to do an electrocardiogram. Test came back normal. The doctor is very happy Cal is thriving and gaining weight, 9.7 lbs. He was put on Lasix to help slow down his breathing and to get rid of the extra fluid in his lungs. Cal has entered mild stages of heart failure. We mentioned to Bansal about the tissue and asked for his thoughts. He said it was a 10/90 chance the tissue would make the hole smaller. :(<br />
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<strong>March 28th</strong><br />
Weight check with pediatrician. Dr. Golonka is very happy with weight. The goal is to gain an ounce a day.<br />
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<strong>April 3rd</strong><br />
Echocardiogram with Bansal. The tissue has not grown at all on the one side. His aortic valve is slightly leaking. Cal is not in full heart failure so we continue to monitor him at home.<br />
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<strong>April 6th</strong><br />
Emailed Bansal. Cal hasn't been alert for more then 10 minutes in a 24-36 hour period. To sleepy to eat. Bansal decided to double his dose and start giving Lasix twice a day.<br />
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<strong>April 10th</strong><br />
Cal has started to coo and smile when he sees Mommy, Daddy, and especially Liam. His smile lights up the room. He is constantly talking and babbling. He has so much to say! He is such a happy baby, without a care in the world. I don't think I could admire him any more than i do. He is such an inspiration. Love him with all my heart.<br />
<em></em><br />
<strong>April 20th</strong><br />
Weight check and two month shots. Weighs 11lbs 4oz. At this rate he will reach the ideal weight in two weeks.<br />
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<strong>May 8th</strong><br />
Echocardiogram. His breathing rate has decreased due to the medicine. The double dose of Lasix is proven to be the right amount. Prayers are also starting to be answered in regards to the VSD. The tissue has grown on one side of the hole to make it slightly smaller. The aortic valve regurgitation (leak) is staying the same, still trivial. The doctor is very encouraged by his weight (12.4 lbs), size of the hole, and that Cal continues to fight. He has moved his chances of not having surgery to 30/70. 30% chance of walking away from it all. I'll take it, even if the other number is higher! (noticed aorta dilation for the first time. Wasn't mentioned to us until later on)<br />
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This whole journey is very humbling. Cal is one of the bravest, strongest people I know. You would never know how hard his body is working by looking at him. He flirts with everyone with his cute little grin and playfulness. I'm honored every day I get to spend with him. He is such a joy to be around.<br />
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<strong>June 19th</strong><br />
Echocardiogram. The hole, VSD, continues to get smaller by the tissue. However the aortic valve has moved from trivial to moderate with the leakage. Dr. Bansal is going to meet with a team of doctors to discuss Cal's case to see what the others think. Cal is still gaining an ounce a day against all odds!<br />
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<strong>June 28th</strong><br />
Phone call from Bansal. The board of doctors all agree to hold off surgery at this time but we need to keep an eye on the valve.<br />
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<strong>July 17th</strong><br />
Echocardiogram. ASD and VSD are looking good. The regurgitation is still at moderate. More bad news arise, The aortic valve has prolapsed. Bansal is 50/50 about surgery and decides to call another meeting with the doctors to discuss what is now taking place. We should be receiving a phone call the next day as to where we go from here. Things don't seem to be looking good for our family. Even though we don't want Cal to go through such a dramatic surgery, we do want what is best for him. We want him to live his best life possible, for him to be heart healthy. With that thought alone it seems as though surgery is the only solution.<br />
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<strong>July 18th</strong><br />
The phone call from the doctor has arrived. It is unanimous. All doctors agree on surgery. They do not want the valve to prolapse anymore and the only way to stop it is to take the pressure off the valve by closing the VSD. They believe surgery will fix the prolapse and regurgitation or at least minimize it. So, the surgeon will patch the ASD and VSD. The valve is to be left alone. If, by a small chance, the aortic valve prolapse and regurgitation stays the same then we will be entering valve replacements at a later date.<br />
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<strong>July 19th</strong><br />
We met the surgeon today. He seems very confident the surgery will fix the prolapse and bring the leak from moderate back down to trivial. Blood work and an x-ray were taken to prep for surgery. Surgery Date: August 8, 2012. My first impression of the surgeon was positive. He presents himself very well and seems extremely knowledgeable. As soon as he walked in the door I felt good about leaving my trust in him in regards to my son. After 5 1/2 months of caring for Cal it will be very hard for me to sit back and let someone else take control. Thankfully he will also be in the hands of God and faith will take over, as well. With that being said I am ready for all that lies ahead. I'm ready for my child to be struggle free. As much as I trust God and the surgeon, I also have trust in Cal. He will fight through. My Hero. We are prepped, prepared and Ready!<br />
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<strong>August 7th</strong><br />
Cal woke up with a bloody nose. He has also been slightly congested. I called the nurse practitioner and emailed Bansal to make them aware. Surgery is still a go. They do not seem to be too concerned.<br />
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<strong>August 8th</strong><br />
Day of surgery. Michelle Legan arrived at 6:00a.m. to take care of Liam. We were to be at the hospital by 7:00a.m. Luckily, we were able to be with him for the first hour. Once we were asked to leave we joined our family in the waiting room. The nurse practitioner updated us hourly. At 11:00a.m. we received the news that the heart was off the machine and beating on its own. At 1:00p.m. we met with the surgeon. He stated everything went great. Cal was on the bypass machine for less than one hour which is unheard of. Therefore, his body didn't go through significant trauma due to the short amount of time it took. Prolapse is gone. The leak is now trivial. Once we were able to see Cal, tears filled up with pride and joy. The ongoing battle was over for him. He looked stunning. He was taking very short breaths. Pain meds were given once he started taking deeper breaths, which took quit a while. Brad and I spent the night with our Heart Warrior. Blood work and x-rays were done throughout the night. Machines beeped repeatedly. Nurses were unbelievable. They were doing anything and everything for our little one.<br />
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<strong>August 9th</strong><br />
Morning rounds by the staff took place. An x-ray that was taken a few hours earlier showed possible fluid around his right lung. One doctor suggested putting another tube in to drain the fluid. The surgeon overruled him and said no to which he wanted to wait and see if it drains on its own. They are going to reposition Cal so the fluid has a chance to drain to a tube that is all ready there. There is still a possibility of surgery in the morning. He has lost 3 units of blood. There is blood in his urine. They took blood and urine samples. Cal sleeps most of the day. He is a little out of it due to the pain meds. He looks like an Angel. So peaceful and stress free.<br />
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<strong>August 10th</strong><br />
Another x-ray taken in the middle of the night showed great improvement with the lung. It is now thought to be a collapsed lung instead of fluid. Cal's breathing is much better - solid and effortlessly. Since his lung is doing better there is talk of going home soon, possibly tomorrow. The surgeon said he is doing remarkably well. He wants to get the catheter out as well as the rest of the tubes as soon as possible. Cal is such a fighter and a healer. They want him to do everything on his own. They have complete faith in him. So amazing! Another echocardiogram at 3:00p.m. All tubes are out by 4:00p.m. Cal continues to do fantastic. We are going to be released from PICU and sent to another area for one more night. Blood in urine is now assumed it was because of irritation of the catheter. We found out today that they "gently separated" his ribs. There are pins holding them back together. Another x-ray in the morning is scheduled for his lungs. Nurses started offering him breast milk. <br />
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<strong>August 11th</strong><br />
<strong> </strong>Woke up to all smiles by Cal. He's back and better then ever! Great way to start the day. Surgeon came in and said the last x-ray showed very little cloudiness around the lung. They are excited to announce that he will be released today to come home, where he belongs. We are going to use the Lasix medicine for a week to try to get rid of the little fluid that is present and return Monday for another x-ray. We are also to give pain meds as needed. <br />
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Home, Here We Come!!</div>
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<strong>August 14th</strong></div>
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<strong> </strong>Took our last and final x-ray. It showed that the lungs are completely clear. Dr. Auslender, one of the main doctors that was with us throughout Cal's time in the PICU, checked him over and cleaned his scar by removing the glue that was left over. He was one of mine and Brad's favorite doctors, along with the surgeon and nurse Lucy. The entire staff was outstanding. They all became part of our family this last week and will never be forgotten.<br />
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<strong>August 31st</strong><br />
6 month check-up with pediatrician. Wasn't able to get his shots at this time due to surgery. </div>
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<strong>September 26th</strong></div>
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<strong> </strong>Electrocardiogram, echocardiogram, and full exam took place. The two leaks, aortic valve regurgitation and the leak from the left over hole in the VSD are the same. Still very minor. No other news and everything is looking great.</div>
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<strong>February 15th</strong></div>
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<strong> </strong>Electrocardiogram, echocardiogram, and full exam. The leaks are trivial. Dr. Bansal mentioned he still has aorta dilation, which he had since he was 2 to 3 months. It is hoped that it doesn't enlarge anymore. If it does, there is a possibility of not being able to play any contact sports in the future. If it doesn't, things will remain normal.</div>
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<span style="font-family: Verdana, sans-serif;">"I wept. You fought.</span></div>
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<span style="font-family: Verdana, sans-serif;">I wondered. You proved.</span></div>
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<span style="font-family: Verdana, sans-serif;">I prayed. You overcame."</span></div>
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<span style="font-family: Verdana, sans-serif; font-size: x-small;">-Baby Katie - Flatline to Sunshine</span></div>
<span style="font-size: x-small;"></span><br />Anonymoushttp://www.blogger.com/profile/06790894495849644525noreply@blogger.com0