tag:blogger.com,1999:blog-23928118453045990052024-03-12T21:25:43.883-07:00Living Whole Heartedly with Only Half a HeartThis blog follows my family's journey with our baby boy's diagnosis with Double Inlet Left Ventricle and Complete Heart Block. Jacob was born on April 4, 2013.Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.comBlogger143125tag:blogger.com,1999:blog-2392811845304599005.post-76582547185008478102017-01-10T19:52:00.004-08:002017-01-10T19:52:44.458-08:00Happy 8th Birthday Georgia!!!<div class="" data-block="true" data-editor="7p8k8" data-offset-key="7ep1r-0-0" style="background-color: white; color: #1d2129; font-family: Helvetica, Arial, sans-serif; font-size: 14px; white-space: pre-wrap;">
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<span data-offset-key="7ep1r-0-0">8 years ago today at 1:15 am a beautiful princess came into our lives. Georgia Ada Grace, you are a shining light in our lives. Jake misses you so much. At supper today he stood up and said..."where did my sister go?". She's coming, Jake...Just 3 more days. When we talked to Georgia on the phone tonight she said when she see's Jake she's going to pick him up in her arms and spin him around. LOVE. Miss you, my baby girl. See you very soon.</span></div>
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<span data-offset-key="7ep1r-0-0">Pre-Cath Day was today. It involved a ECG scan, x-rays and bloodwork for Jake, followed by an indepth conversation with the nurse and the doctor about the cath itself, the risks involved and the recovery period. In a nutshell, Jake is having a pre-Fontan diagnostic cardiac cath and will possibly be having his narrowed left pulmonary artery dilated or stented as well as any collateral arteries coiled. </span></div>
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<span data-offset-key="7ep1r-0-0">Here is Jake at the ECG Scan, he wanted his own copy to take with him when it was done :)</span></div>
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<span data-offset-key="5v7b1-0-0">What does all that mean??? It means that this cath procedure will see Jake intubated with access through both his groin and his neck (The neck is necessary this time because the resistance of the lungs can't be measured by going through the groin). In the Fontan procedure, the route of blood to the lungs is changed so that it's no longer being pumped in but is a drip flowing through with no pressure behind it. Because of that, Jake's pulmonary arteries need to be clear and wide otherwise the Fontan would not be a good match for his physiology. It also means that the cath will be performed, then the head doctor will come to see us and make a report and if possible head back in to enlarge his left pulmonary artery and possibly his right as well. The heart is an amazing vessel, and in a case like Jake's where so many interventions have happened and the blood flow is not taking a normal route, the heart will grow it's own collateral routes to where it believes the blood should be flowing - these over time reduce the effectiveness of the repairs being done by the Norwood, Glenn and now Fontan, so these need to be coiled perodically in the cath lab. </span></div>
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<span data-offset-key="b7umh-0-0">One point of concern is that despite his eating being above normal, Jake has lost two pounds since early December. He is now down to 29.5 lbs, while the optimal weight for the Fontan is 33 lbs. </span></div>
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<span data-offset-key="b7umh-0-0">Here he is on the scale!</span></div>
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<span data-offset-key="afo34-0-0">Tomorrow Jake heads into the Cath lab at 12 pm, for a procedure that will take 3-4 hours. After that he will spend 4-6 hours in the recovery room. At that point Jake will either be released to RMH or will spend the night at SickKids being supervised. </span></div>
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<span data-offset-key="5dpva-0-0">Prayer Warriors --- we need you tomorrow. Signing off on the list of potential risks was an incredibly hard thing to do. I want to grab my boy and run for the hills. Or pull out my own heart and give it to him. I wouldn't hesitate if it would save his life and keep him from having to go through all this. But here we are. There's no away around this valley - we have to go through it. With each surgery Jake has had, there has come a point where my faith is not sufficient - I'm feeling that point fast approaching. Please uphold Jake for me.</span></div>
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<span data-offset-key="5dpva-0-0"><b>His strength is perfect, when my strength is gone.</b></span></div>
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<span data-offset-key="5dpva-0-0"><b>He'll carry me when I can't carry on.</b></span></div>
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<span data-offset-key="5dpva-0-0"><b>Raised in His power, the weak become strong.</b></span></div>
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<span data-offset-key="5dpva-0-0"><b>His strength is perfect.</b></span></div>
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<span data-offset-key="5dpva-0-0">Perfect for me. Perfect for Jake. Perfect for Jon. Perfect for Georgia. Perfect for all our loved ones and friends. </span></div>
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<span data-offset-key="5dpva-0-0">One moment at a time...Here we go. </span></div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com1tag:blogger.com,1999:blog-2392811845304599005.post-74442861714870907672017-01-08T18:58:00.000-08:002017-01-08T18:58:05.900-08:00While we wait...Two and a half days at Ronald Mcdonald House have given me lots of time to think. There is a huge community rallying around us - our prayer warriors are world-wide, our church family is a constant source of encouragement and love, my Mom and Dad have stepped up once again to care for Georgia and when I need to talk - my friends have got my back. Thank you all for that. One day at a time has been my philosophy for a long time, and a wise friend of mine told me recently that when things get too hard for one <i>day</i> at a time, then I need to take it one <i>moment</i> at a time. I've thought of that every day since. Waiting is hard, with Jake still in partial isolation, and being in RMH means that he is around more people now so the hand washing is constant, the sanitizing is constant and the worry never goes away. Jake's surgery is one week from tomorrow - that's 7 more days to keep him well. I'm using all the tricks in my repertoire - Norwex and YL Essential Oils especially. <br />
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Let's talk about food. You will all know the struggle with Jake to eat normally has been real from day 1. Because of the severity of his heart defect, at birth he was too weak to breastfeed or bottle feed normally, which led to his dependence on his NG tube for the first 22 months of life. How I hated that NG tube, with it's constantly being pulled out, and making the skin on his face bleed, and having to pin him down literally so Jon or I could replace it, by the time we got rid of the NG tube Jake would hide away from us when he know what was coming. It was horrible. If you missed that part of our adventures with Jake, here's a pic of what the NG was for him...<br />
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At 22 months Jake got his G Tube finally, and while it has it's cons it is a hundred percent better than the NG. Jake has been through mountains and valley's with his oral eating progress and I am always hesitant to say things are improving because he usually proves me wrong but this time it's been a couple of months of steady progress with eating. Jake seems to be finally feeling hunger, and enjoying some foods for the first time in his life. Let's break down what Jake ate today, to give you an idea of where he is...Keep in mind that he also gets 1400 mls/day of formula through his tube. <br />
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Breakfast: half a slice of bacon, 1/4 of a cake pop :)<br />
Snack: half a slice of bacon, a few bites of raw carrot<br />
Snack: 9 or 10 Salt and Vinegar Chips<br />
Supper: a few bites of roast beef, several bites of cheese, a little of a bread roll<br />
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And now he's sleeping and having his final tube feed of the day. <br />
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That's not a whole lot of food for the average 3 and a half year old but for Jake it's HUGE....<br />
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He got his second piece of bacon today from the Home for Dinner volunteers - he walked up and asked one of them for bacon :) Check it out...<br />
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After Jake's recovery from the Fontan is complete, I am hoping to switch our focus to his eating skills and wean him off of that tube. Ideally, I'd love to see it out by the time he starts Kindergarten. It seems insurmountable at times, but Jake has proven that nothing is impossible. Speaking of impossible, Jake has a new T-Shirt that says SickKids VS the impossible. I can't think of anything more perfect for him to wear. <br />
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Ronald Mcdonald House TO is a great place. It's so calming and cozy, with nothing but support through the employees, volunteers, programs and other families. On Saturday Georgia will be arriving with Mom and Dad, and then it will really be complete. I can't wait to see Dad in the kitchen making my favourite breakfast of Egg in a Hole, and Georgia running down the halls with her brother, and my Mom with her cup of tea and smiling face. Bluebelle will be moving on to arrangement #2 that day with Carolyn and Aaron - thanks so much, guys. Here are a few of our RMH experiences so far...<br />
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Right now as I write this...This is Jake snoozin' on the couch in our room....<br />
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Late night hockey with Momma and Dadda in the Jays Care room downstairs...<br />
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Playing with his dinkies all along the windowsills of level 4....What a smile!</div>
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This is a big week for Jake, with three likely full days of appointments - Tuesday, Wednesday and Thursday. Jake now shows fear and anxiety with hospital appointments and procedures, so please keep him in your prayers on these days. Pray for his comfort, strength and that he won't be afraid and will know how loved he is. "We have this hope as an anchor for the soul, firm and secure." - Hebrews 6:19.<br />
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<br />Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-3781042351126996442017-01-01T18:25:00.001-08:002017-01-01T18:25:40.161-08:00God Bless Heart Warrior JacobThis post has been hard to write, mainly because I find our life is such a paradox of ups and downs --- I don't want to write out the downs and have people pity us or view us as depressing or needy. At the same time, I also want to share our story with those who care about Jake and want to pray for him and help us in any way possible. So I've been starting and stopping typing with different takes and thoughts several times over the last week but am determined that now on New Years Day 2017 I will finally finish it. You can expect a lot of new postings over the next 6-8 weeks as well, as we travel through Jake's Fontan surgery path starting in five days when we board the plane for Toronto and SickKids and hopefully Ronald McDonald House as well. Five days... But before I launch into all I have to say, check out the amazing Christmas we have had at home! Jake got his much requested green bicycle!!!<div>
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Here's where we are after Jake's last echo appointment. His heart is doing okay, but he's had a super persistent cough for months, and this is apparently due to Jake's heart being more enlarged than usual --- he's always had some enlargement but now it appears to be affecting his lung function and is just one more reason that he needs this Fontan to take some pressure off of his heart and lungs. Jake is booked for Surgery on January 16, but has three days of appointments leading up to the surgery - Pre-Catheterization, Catheterization, and then Pre-Op Day. </div>
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So, the Fontan...what is that??? Here's a simplified breakdown of what's happening in this third stage of Jake's repair The Fontan procedure is used in pediatric patients who possess only a single functional ventricle, in Jake's case the cause is an abnormality of the pumping ability of the heart (hypoplastic right heart syndrome). The single ventricle is doing nearly twice the expected amount of work because it has to pump blood for the body and lungs. After Fontan completion, blood must flow through the lungs without being pumped by the heart. Therefore, children with high pulmonary vascular resistance may not tolerate a Fontan procedure. Often, cardiac catheterization is performed to check the resistance before proceeding with the surgery. Jake's last open heart surgery was the bi-directional Glenn, which involves redirecting oxygen-poor blood from the top of the body to the lungs. That is, the pulmonary arteries are disconnected from their existing blood supply (the shunt created during his Norwood procedure at 5 days old). The superior vena cava (SVC), which carries blood returning from the upper body, is disconnected from the heart and instead redirected into the pulmonary arteries. The inferior vena cava (IVC), which carries blood returning from the lower body, continues to connect to the heart. The Fontan Completion then involves redirecting the blood from the IVC to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia and leaves the single ventricle responsible only for supplying blood to the body. (Source: https://en.wikipedia.org/wiki/Fontan_procedure)</div>
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Here's an image I found helpful, although Jake has HRHS, he also has transposition so what appears to be the left ventricle is actually the right.</div>
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Jon and I are terrified, to say the least, but we are not doing this alone. We have a huge network of prayer warriors behind us, and the support of our family and friends. Jake knows he is loved, and we've been spending a lot of time with Georgia in preparation for leaving - not wanting her to feel left out especially as we will be away for her birthday on January 10th. We had a big party with all her friends last week, and I"m thankful that worked out for her before we go. And yet, this morning I was cuddling Jake and Georgia walks up and asks me why we love Jake more than her. Instant heartbreak. Over the next five days I'm determined to do as much one on one time with my girl as I can - I don't want her feeling like she is less important in any way, shape or form.</div>
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I am so sad to be leaving my BlueBelle behind and that I'll miss a month or so of my baby niece Alice's life...It's not fair at all. We've just come home from our Sunday norm - dinner and family time and Mom and Dad's house. The last one for a few weeks, but I'm already looking forward to the next one.</div>
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Tomorrow we start to pack. We don't need much with us as Ronald McDonald House has great laundry facilities, and we can buy a lot of Jake's tube and med supplies at the Speciality Food Shop in Sick Kids so we just need enough to get us through the first week or so. Mom and Dad and Georgia will be joining us the weekend before the surgery - that will be a happy reunion for sure. For more frequent updates be sure to join Jake's group on Facebook - <a href="https://www.facebook.com/groups/490608951118381/" target="_blank">Bless Jake's Heart</a>, and I'll do the more detailed posting on here as needed. </div>
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I was driving along a couple of days ago, thinking about Jake and all he has faced and has yet to face and the words of Jeremiah just flew into my head. They've been repeating a lot since, so I put them on one of my favourite pictures of Jake that was taken just a month or so ago. God bless Heart Warrior Jacob.</div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-71123798578687353642016-09-16T10:50:00.000-07:002016-09-16T10:50:52.889-07:00One Day at a Time.As most of you will know, about two months ago Jake's case was discussed at Sick Kids and he was accepted for his Fontan surgery. We have spent two months constantly checking the mailbox and our phones for a date for the Heart Cath that would start off this journey for Jake. Then, it was communicated to us that Jake's Fontan is considered an elective procedure because he is "well" compared the huge critical caseload in from of the cardiac surgeons. The average time for a elective cardiac procedure is now 10-12 months at Sick Kids. BUT... We got even better news today --- because Jake was supposed to have this Fontan procedure months ago, he's not at the bottom of that list. The delay in surgery was due to Jake's small size and he is finally *thisclose* to the weight goal of 33 lbs (about one pound away!). So, we have been told that Jake's wait is more like six months - but we are already two months into that...so that becomes four months...We are anticipating surgery early in 2017. <br />
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This is a mixed bottle of emotions though. On the one hand, I don't want Jake's heart stopped and his little body opened up anytime soon. On the other hand, his decline has been significant over the summer. You will notice the next time you are near him, a nearly constant blueness to his face/fingers/toes. He breathes hard and fast from small bouts of physical activity. And his oxygen saturations are keeping lower than normal. My fear is that before this surgery is scheduled, Jake will be sick --- sick enough to affect the success rate of the Fontan. I'm leaving this in the hands of the Great Physician though. He has not failed Jake yet. <br />
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So there we are...while it's not a specific date, it's a narrowed time frame and I'm thankful for that. <br />
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And I got the biggest smile on my face when Jake's cardiac Surgeon, who has done all of Jake's open hearts to date, responded to my emailing him the latest picture of Jake with this line....<br />
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"Wow! He looks great!"<br />
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Such a simple sentence, but for me...coming from the head of cardiac surgery at Sick Kids Hospital....this is a huge affirmation that Jake is ok. So, we are taking this as a blessing, because otherwise we will lose our minds worrying about the timing. I'm vowing to trust. One day at a time.<br />
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<br />Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-11611301227524638592016-07-23T19:09:00.002-07:002016-07-23T19:09:23.632-07:00My Old FriendI want to share with you our memories of the day our sweet almost 10 year old Rough Collie crossed the Rainbow Bridge. There was never enough time, but this final day was all about Lukey.<br />
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I'm at a loss for how to begin this post. Let's start with Lukey's Top 10, counting down Letterman style. Some of these he couldn't enjoy for the last few years of his life, but I'm including them anyway!</div>
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10. Fetch, Lukey style - It's been at least five years since Lukey has played fetch BUT....this was his favourite game as a puppy. My boy was stubborn and liked to do things his way so our version of the game was this: human throws the object, then puppy runs and grabs it. Human says come here puppy...puppy runs away and a game of catch Lukey ensues....oh wonderful memories!</div>
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9. Benefuls - Cue the head tilt with this word! Lukey loved Benefuls with a passion. </div>
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8. The park - again cue the head tilt! Any park, Lukey didn't care!</div>
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7. Expressive sounds - Collies are known for their unique expressions and Lukey was no exception. Barking, moaning, groaning, crying...he did it all. He particularly hated it when people danced in his house!</div>
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6. Visiting his Nanna, Poppa and London the beagle - all the love and all the food is how Lukey would likely describe his time with them, and his sleepovers with them. Thank you for all the joy. </div>
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5. Other dogs - were most frequently the cause of his cries and moans, my dramatic big boy. His cousins London and Gilbert will miss his calming presence I know.</div>
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4. Walks - cue the head tilt once again! Any walk, any length, any speed, anywhere. LOVE. </div>
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3. Cheese - Cue the biggest head tilt! All we had to do was touch the wrapper in the fridge and Lukey would appear. Cheese was his big love, in every form possible - even as pill camouflage in his last days!</div>
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2. Butt Rubs - Any visitor to our house would be quickly offered Lukey's hindquarters, and pushed against until they complied. I am sure we spent many hours in total rubbing those huge butt cheeks :)</div>
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1. Being close to his humans. Especially me. Lukey was my shadow, and a large shadow in a small house. I wish I could trip over him again. Here we are in his final hours. We sat here all afternoon, right up until the vet pulled into our driveway.</div>
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On July 4th 2016 I lost my forever friend, but I like to think that his final day was a good one. Here's how it went...<br />
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Lukey got a homestyle breakfast served to him by the kids. Bacon, egg and toast and he ate the whole works with us sitting beside him. <br />
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Then we all got ready for the day ahead, and took our mopey selves outside to where Lukey loved to sit in our yard and watch all the comings and goings. We were expecting some special visitors, and just wanted to focus completely on Lukey and sharing our love with him. First, we did a small brushing, and then a sugar cookie cologne for good measure :)<br />
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Then the loving began. There is something so pure about the love of a dog, I know it has been written about and sung about but there is genuinely nothing more loyal , steady hearted, or loving than a dog like Lukey. <br />
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Then lunch! A picnic!</div>
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And more loving...</div>
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Earlier in the day we asked Lukey if he wanted to go for a walk, but he was too uncomfortable to stand up. As the day progressed, we asked again and this time he got up and we went less than halfway up our street before he was ready to turn around. He got his final leg of the walk from Jake. Oh, my heart. I hope you are running through the fields of heaven now Lukey, leaping and free from pain. I hope you are with Nugget and Loppy too. </div>
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Then two of Lukey's favourite people came to visit. And to hug and kiss. The kids went with Nanna and Poppa while Jon and I hung out on the lawn and waiting for the compassionate care vet. </div>
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Then the vet came. And we said goodbye in the most peaceful way imaginable, in our backyard and cuddled with Lukey on the grass. I hope you are happy my sweet boy. There will never be another like you.<br />
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Today I said goodbye to my old friend<br />I pray some day we get to meet again<br />Under one more clear, blue sky<br />Up there where the eagles fly</div>
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And we'll go walking in the sunshine<br />With a big smile on our face<br />Race the river to the ocean<br />Go splashing in the waves<br />And I'll wrap my arms around you<br />We'll be together once again<br />And I'll tell you how much I've missed you<br />My old friend</div>
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Yeah, I know you're up there looking down<br />On that rainbow bridge we talked about<br />There's a place for me and you<br />Somewhere up there behind the moon</div>
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- Johnny Reid </div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-42972003551493035782016-07-20T18:54:00.002-07:002016-07-20T18:54:44.922-07:00To Toronto we will go!About two weeks ago Jake was given the go ahead to have a referral made to Sick Kids for his Fontan open heart surgery. This meant two things had happened --- he had almost reached his goal weight of 15kg (weighed in at 14 kg on that day!), and he was showing symptoms of decline in his energy levels, oxygen levels, increased blueness, sleeping more, and so on. So, it's time...time to wait for a heart cath date, after which we'll get the surgery date. Cue the stress...<br />
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But, thanks to some pretty amazing people....we are not cueing the financial stress. There is no better gift to give the parent of child with a chronic illness than peace of mind and the ability to focus entirely on the needs of their child without being stressed about how they are paying for the flights, the place to stay, any supplies needed for the child's care, and so on... On that note.... I have a few THANK YOU'S to say...<br />
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Members of our church organized a Family Movie Night Fundraiser for Jake. They showed the movie The Incredibles in honour of our Superbaby. Dominion Stavanger Drive donated the food/drinks/candy thanks to John. Michelle and Elizabeth pulled this amazing night together so fast --- it was a lovely wednesday night out for those who came, and a night of amazement for myself and Jon as we watched a church full of people pour out their love for Jake and support for us. There are so many people to thank, from the silent auction donors, to those who baked goodies, those who volunteered their time to help out, and so on. A shout out to the CBS Corps who raised $1000 for Jake. Incredible. So much love. Some day we hope to be able to give back in the way we have been blessed. Here are some highlights from the night!<br />
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Check out the crowd for the movie!<br /><br />
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Jake approved of the movie selection!</div>
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Half the Heart, Twice the Fight!</div>
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Georgia and some friends :) </div>
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Popcorn and Candy anyone???</div>
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The Silent Auction is going on....</div>
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These two ladies have the kindest hearts - thank you Elizabeth and Michelle!!!</div>
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My unborn niece was there too! Love you little Sis!</div>
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Our three hooligans - all on Team Jake!</div>
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Team Jake! We love you bud.</div>
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I'll do another post next week with some of the goings on in our lives, including the loss of our sweetest dog Lukey as well as a description of the upcoming surgery and why Jake needs it!<br />
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Ending today with the most thankful heart. So filled. Thank you all.Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-39666218582307271982016-04-18T18:00:00.002-07:002016-04-18T18:00:43.298-07:00I won't cry, Momma.We had to change Jake's G Tube today because the current one had gotten brittle and couldn't be closed anymore. It's never an easy thing to do, but today was hard. It was completely different from any of the other times that we have put in a feeding tube, whether NG in his nose or G in his belly. Why was that? Jake's awareness of what was happening. Jake completely broke my heart, and Jon's, in the lead up to putting it in. As we did the prep work Jake noticed what was happening and said "No, don't do it", and shortly after followed with "it's going to hurt" and genuine fear on his face. I told him that we loved him so very much and would do it as quickly as we could, and explained why we had to do it so he could understand a little more. Then...he looked me in the eye and said "I won't cry, Momma." He was trying to make me feel better, and to protect me from the unpleasantness --- what an incredible thought process for his three year old mind. <br />
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When Jake had his NG tube, which needed to be replaced frequently because he used to pull it out, or vomit it out, I always placed the tube while Jon held his arms and legs because he would fight it. I realized today as I watched my husband trying to insert the G tube into Jake's little belly, that I have never placed the G tube. I am completely comfortable with the tube, but have never tried to put it in myself because I can't bear to be the cause of his pain. Today was a rough insertion as Jake was flailing around a lot and sometimes its hard to get the tube into that tiny little hole. My husband is an amazing father - he got that tube in despite it all - I looked at his hands shaking after it was finished, and knew that there are no words to describe that kind of love - to keep going even when it hurts. I am a lucky woman, and thanking God for Jon today. Jake did cry, and so much that he went to sleep almost immediately after the ordeal, but the thought that he had to say that to me today as if he knew what I needed to hear --- I can't wrap my mind around it. My Super Baby. Today has dredged up all my fears about the upcoming Fontan --- Jake can so clearly tell us how he feels now, and what he needs or doesn't like. It's going to be very hard to watch and listen to. And I won't lie, I'm scared. Taking a deep breath now, trying to unwind and let it go for now. One foot in front of the other, one day at a time. <br />
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In lighter news...Jake wants a tractor :)<br />
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<br />Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-64523136200420387822016-04-04T17:50:00.001-07:002016-04-04T17:50:37.776-07:00Happy 3rd Birthday Jake!This morning I woke up, turned over and saw a beautiful sight - my now three year old miracle baby and his father sleeping next to me. As tired as I was, knowing I could have another hour of sleep before getting up for the day, I decided instead to stare...and wonder...and pray over my son. <br />
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Jacob is now three years old. The baby that I feared would never live to see birth, yet alone one birthday. He is my miracle. When I was pregnant with him I would spend time praying for him to be have a miracle and be healed. Shortly after Jake's birth, I knew what I know today --- Jake already had his miracle, he was alive and well. Most of you reading will already know Jake's birth story, and about his first two months of life at Sick Kids hospital in Toronto. It's a hard memory to relive so I'll keep it to a minimum today. Still, it's part of Jake's story so we'll talk about it today.<br />
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Happy Birthday Jake. 8 lbs 5 oz, you came into this world by C- Section to a room full of pediatric specialists who were prepared for any scenario...<br />
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You've come a long way baby.........<br />
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My 3 year old Super Baby...let me tell you about him...<br />
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1. What does Mommy always say to you? "ummmmmmm...."<br />
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2. What makes you happy? "Uhhhhhhhhhhhhhhhhh....."<br />
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3. What makes you sad?<br />
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4. How old are you? "Three"<br />
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5. How old is Mommy? "One"<br />
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6. How old is Daddy? "Three"<br />
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7. What is your favourite thing to do? "Play Batman!"<br />
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8. Who is your best friend? "Sissey. Dadda, I'm your friend"<br />
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9. What do you want to be when you grow up? Drops a toy on the floor..."get that Dadda!"<br />
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10. What is your favourite animal? "dinosaur"<br />
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11. What is your favourite TV show? "pwah padrol" (ie: Paw Patrol)<br />
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And then he got bored and walked off :) <br />
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It's been a long time since my last blog post, but there is something lovely about life being so calm that you actually feel there is nothing to report. It's nice. The number one question people are asking these days is when is Jake's next open heart surgery? And that's a toughie. We don't have an answer for that question, and let me tell you why. Jake is on the small side for his age, and the long term risks from the Fontan surgery are much greater when the child is too small. So, essentially he's 1.3 kg away from the goal of 15 kg, or 2.8 pounds away from the goal weight of 33 pounds. Looking back over his charts, it shows that it took him 9 months to gain his last 1.4 kgs of weight, BUT, he was vomiting much more then so we are hoping it won't take nearly that long this time. <br />
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The downside is that while we wait, Jake is gradually slowing down as he outgrows his current Glenn circulation. I've been assured that this is perfectly normal in kids with any form of single ventricle defect but it's still incredibly hard to watch. Jake has periods of being very blue, and gets tired and needs to rest much more often than other kids his age. For this reason, he often spends a significant part of his time at his activities lying on the floor and resting. It's hard on my heart to watch, but rushing the surgery is not a safe option either. So, why is Jake getting blue and tired so often? Let me try to explain it to you...The Glenn circulation that Jake currently has means that he gets more richly oxygenated blood to his head and upper body, but his lower half and legs are still recieving the blue (no oxygen) blood. So, as he gets more active and more blood needs to go in the legs it then comes back up to his heart through the vein that is not connected yet and that causes the blueness and the tiredness. So that's where we are. We are waiting, feeding as much as we can and praying for him to remain stable while he gets this much needed weight on. It's a frustrating place to be, but Jake is happy and oblivious to all that is going on in his little body so that is all that really matters right now.<br />
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For his third birthday Jake recieved a fire truck toddler bed :) Here he is having his first nap in it today!<br />
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And putting his three pennies into the collection box at Sunday School with Sister's help!<br />
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And tonight, blowing out the candles on the cake that he decorated with Georgia....<br />
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Life is good. God is good. As I look out over the next year for Jake and all the unknowns it makes all of the difference to know that it's in God's hands, not twisting in the wind. Psalm 147:3 "The Lord heals the broken in heart and binds up their wounds."Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-12632990057666397382015-11-14T17:03:00.002-08:002015-11-14T17:03:25.794-08:00Do you believe?<div>
Tonight Jon and I had the priviledge of volunteering at Ronald Mcdonald House and serving families who were living there, just as we have lived there during our journey with Jake. It was a great experience. Heartfelt and wonderful, and truly felt like giving back just a little of what we have been given. I'm also so thankful for the NL Heart Support Group, and the life long friends I have made through it --- often, they are the only ones who can truly understand how I feel about my son's congenital heart defect and it's impact on his life. </div>
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I have a HUGE Thank You to say as well. In October our local children's hospital, the Janeway, did it's annual Pyjama-rama Fundraiser and we created a team with the goal of raising $500 in dedicated funds for the cardiology department where Jake has spent so much time and had exceptional care. Through the donations, Team Jake donated $525 to the Janeway Cardiology department --- THANK YOU! With 1 in 100 children being born with a CHD this is a very busy part of the hospital.</div>
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My sweet kids are the light of my life. Georgia blessed me in ways she will never comprehend the day she came home from school upset because her classmates said that God was not real. My outspoken six year old told them that God was very much real, and alive in her heart. In the rush-rush-rush of daily life, I often feel that my messages don't get heard, but this most important message of all was heard. And I know not only from me - from her sunday school teachers Kathryn and Josh - and from her wonderful Nanna and Poppa. I am so thankful. </div>
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Jake is once again making the health professionals in his life draw a blank in terms of explaining his progress. His dietician just simply shrugs and says "I have no idea", and his cardiologist wonders if it could be that he's not absorbing some nutrients properly but really has no idea either. Jake's diet has been 50/50 with two types of formula for the last year or so - one is high calorie and one is normal calorie. We recently ran into a supply issue with the high calorie formula and went over two weeks without it. When Jake was weighed in after those two weeks he had gained A POUND. A POUND!</div>
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So the decision was made to continue on without the high calorie formula because he was vomiting less, eating a tiny bit more orally, and gaining weight. So here we are, about five weeks after stopping the high calorie food and Jake weighed in at 27 lbs 8 oz last week. Whoo! So great! </div>
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I had a long chat with Jake's cardiologist last week, and she told me about evidence that is based on 40 years of data, that shows that for children with the Fontan circulation - delaying the surgery until the after the age of 3 has the best short and long term outcomes. So, we've officially been delayed once again - now we are expecting the Fontan procedure at SickKids in May or June of 2016. Remember the tiredness that I worried over in my last post? That's most likely directly related to the growth spurt that he has been going through. It's normal for single ventricle kids to slow down and have tiredness increase prior to the Fontan procedure, but for most kids who are on a normal growth curve this happens gradually. In Jake's case, he has done a year's worth of growing in six months, and this is a big adaptation for his little heart. Jake's iron and folate levels are also being checked because it's frequently a deficiency in children with single ventricle heart defects. Jake's iron is normal, and we are waiting for the Folate report to come back. </div>
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In the meantime, my boy is growing, happy and sweet. His blankies are his most beloved posession, as you can see in the picture below which is from this morning --- Jake is lying down to rest with about 10 blankies on him :)</div>
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We also built a snowman this week. Seriously, we did.</div>
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There are months where I feel like life is upside down. It's topsy-turvy and ridiculous, and makes absolutely no sense at all. This has been one of those months. Some days I just feel like shouting --- life is hard. <div>
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life is cruel.</div>
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life is senseless. </div>
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life is beautiful regardless. </div>
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The whole world around me seems to have gone crazy --- most recently with the terrorist attacks in Paris, but with a thousand other events taking place daily in my own town and country. There are days when I see why people ask - what kind of God would allow this? What kind of love is this? And with my own life as testimony, I don't have an answer for any of them. I just believe. Last night I watched a movie titled "Do You Believe", and was blown away by it's message. I copied down the part that resounded the most with me and wanted to share it with you. Here it is.<div>
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Do You Believe?<o:p></o:p></div>
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I’m not sure any of us ever gets to see the whole picture. the God’s eye view, so to speak.</div>
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Tt’s like we’re little children, sitting on the floor, gazing
up at the backside of a tapestry that’s being woven.<o:p></o:p></div>
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To our eyes it sometimes looks ugly, the colours are a jumble and none of it makes much sense.</div>
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But one day, we’ll no longer be sitting on the floor.<o:p></o:p></div>
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We’ll come around to the other side,<o:p></o:p></div>
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And the genius of God’s handiwork will become clear.<o:p></o:p></div>
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At the center of it all, we’ll see the cross.<o:p></o:p></div>
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But in that immense tapestry, we’ll also see the single
unique thread, <o:p></o:p></div>
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The only one of it’s kind and colour, that our own life has
added to the piece,<o:p></o:p></div>
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The one thread without which the whole thing, would somehow
be incomplete.<o:p></o:p></div>
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Personally, I can’t wait to see His masterpiece. <o:p></o:p></div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-71512325162717158382015-10-09T13:05:00.000-07:002015-10-09T13:05:31.372-07:00Some days you gotta dance...Yes, I am titling today's blog after a Dixie Chicks song. It's stuck in my head today - particularly the line "live it up when you get the chance, when the world's not making no sense and your feeling just a little to tense".... And now, if you know the song, it's probably stuck in your head too. Sorry about that!<div>
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I have created a Facebook Group called <a href="https://www.facebook.com/groups/490608951118381/?fref=ts">Bless Jake's Heart</a> in an attempt to keep those who pray for Jake updated on a more regular basis, as the normality of our lives these days doesn't give me a whole lot to write about --- and I thank God for that every single day!!!! Please feel free to join it, and keep up with Jake's busy life these days. We have a lovely Fall routine in place, that involves a freedom Jake has never had before. Jake is in swimming lessons, a weekly playgroup, and KinderMusik, and every dry day we are at the playground across the road where Jake can easily spend an hour sitting in the swing, he loves it so much. </div>
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Those of you who have been following Jake for awhile know that he is due for his third stage repair, the Fontan Procedure, right about now. Jake's cardiologist and SickKids have both expressed the opinion that it would be better for Jake to be bigger before this procedure takes place. The open heart surgery has been delayed, likely until March or April, to allow time Jake to grow. That is only if his heart function remains the same, and we keep getting those great "no change" reports at his Echos. So we're entering Flu season and hoping for the best. One day at a time, and knowing God is bigger than they bogeyman, as the Veggie Tales would say.</div>
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In the weight department we have good news to report! Jake weighed in at a whopping 26 lbs 8 oz at his last weigh in!!! Whoo!!! We danced that day too. Now we're aiming for 27 lbs...hopefully this month. The intense feeding schedule we have him on seems to be effective in putting on those calories. Of course his eating/drinking has dwindled down to almost nothing because he no longer feels hunger but he is still snacking enough to retain his eating skills, which is really all we need at this point. Jake does feel thirst though, because of the concentrated formula he is on, and will also drink a little each day.</div>
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Georgia is on my mind today. It's tough being the healthy sibling sometimes. Our life is in a lovely level of calm right now, but I know in a few months it won't be. Please keep Georgia in your prayers too. </div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-26029909243974646942015-09-03T19:22:00.001-07:002015-09-03T19:22:14.294-07:00It's a brutiful life. Life is brutiful. I've said it before, but I truly believe it - it's a brutal and beautiful life. I started my day today with the image of a 2 year old Syrian boy named Aylan who drowned and washed ashore in Turkey when his family attempted to escape persecution and become Canadians. I can't even deal with the pain that my heart feels over the suffering. It's instant focus and clarification in my own life. My prayers are with that boy, but I know that he is now free from pain and suffering and with his Heavenly Father. It's hard to transition away from that thought, but the world keeps on spinning even when you feel like the pain should stop it in it's tracks.<br />
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There is still beauty in the world, but it hardly seems right that both moments can coexist. Look at the beauty from my day today, thanks again to the very patient and talented Vanessa Pretty.</div>
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At Jake's last weigh in, he was back up to the 15th percentile with a whopping 25 lbs 11 oz on his tiny frame. For the first time, I am noticing a real solid weight in my arms when I hold Jake even for a short period of time. I know that his pattern is a roller coaster of ups and downs with his weights, but for today I'm embracing my 25 lb 11 oz Jake and the little bit of chub that seems to be developing - most noticeably that his pacemaker is not so prominently stuck out from his little belly! I love it, and I thank God for it. It's a hard road of reflux and tube feeds but we are running through it together. In terms of reflux though,, the new med Sulcrate did not help Jake's reflux so we have discontinued that and restarted the Domperidone to see if that will help at all. A side effect of domperidone (TMI warning!) is soft stool though, so we'll see if that interferes with his weight gain. For now, Jake has graduated to weigh ins every second week - so much freedom! </div>
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Jake's genetic testing came back NEGATIVE for the Loveless hearing loss gene - and I couldn't be more thankful. Both of my kids had a 50% chance of carrying (and thus being affected by) this gene - and neither is a carrier. I know most people look at me and say that I manage just fine with the hearing loss, but I would still never wish it on any one. Jake often tells me things that happen before I hear them - like tonight when I was putting him to sleep upstairs Jon came home and Jake popped up and said "Dadda home!" before I heard a sound. My little darlings.</div>
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A HUGE thank you is due to everyone who donated blood during the 2 day blood drive in Jake's honour. Our goal was 100 donors, or roughly 300 pints of blood. 106 PEOPLE DONATED! You all rock, and I thank you so much for honouring my Heart Warrior with your own gift of life. Next year's goal - 120 donors!</div>
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A proud sister representin'</div>
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No matter how busy you are...</div>
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Poppa donated too!!!</div>
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Jake driving the blood mobile :)</div>
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In our world there always seems to be a cause for concern. Lately we've been finding the costs of feeding tubes/and their acessories very oppressive. I find myself daily searching Medical Supply Exchange sites on Facebook, and with the help of a great friend (That's you Dominique!) I've managed to save literally hundreds of dollars on Jake's day to day supplies - but the cost still adds up. More than that though, we have discovered that Jake's oxygen saturations are almost always lower on his left hand side. Significantly lower. For example, tonight's resting oxygen saturation is 67-70 on the left side, and 88-89 on the right side. We are tracking this, and our cardiologist is aware, and we're going to explore this at our cardiology visit next week. Jake's safe oxygen sat range is above 75, but preferably above 80, so I'm worried that this low sat on one side of his body is going to affect him in some detrimental way. There is always something. <br />
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Here are some highlights from our family life since the last update.<br />
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St. John's hit 30 degrees celcius for only the 12th time in the last 30 years...so we went to the beach!!!</div>
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Look at the determined face on this Heart Warrior....</div>
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Jake's G tube malfunctioned but he's still smiling after Momma and Dadda replaced it at home!!!</div>
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Our beloved dog is having major health issues, but we're keeping him comfortable and enjoying each day with our Lukey boy.</div>
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One benefit of having a big sister - being dressed up like a doll! Check out Jake's shoes - they belong to an Ariel doll!</div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-65574818427837504312015-08-11T17:26:00.003-07:002015-08-11T17:26:53.121-07:00Cover this child with Your love.A few days ago we arrived home after Jake's first ever family vacation. We packed up our car and drove to Cavendish, PEI for seven days of bliss. Overall we drove about 3000 kilometers there and back - and that doesn't include the distance covered by the Ferry boats! The kids were not fans of the car and driving, but we got around it with the use of a dvd player, many naps, and overnight boat crossings. For me, the whole experience was wonderful. I always use the word normal like it is an oxymoron - but it is for us in many respects. This was normality at it's finest. The highlight of every day was sitting and playing poolside - we spent most of our time here. We ate lots of fresh seafood, went to the beach, a different restaurant most nights for supper, Sandspit, Shining Waters, Ripley's Believe It or Not Museum, The Haunted Mansion in Kensington, Jurassic Bart's Dinosaur Museum, the Red Dirt Shirt shop, lots of Cows Ice Cream (Rated number one ice cream spot world wide!)...I can't even name it all right now. But mostly it was fun. Lots of fun. Since Jake was involved it was sometimes pukey fun - no pun intended, but we replaced his feeds as well as we could and carried on. I'll let these pictures tell the story...<br />
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3 days before we left for PEI Jake had a hard weigh in at the dietician. A couple weeks ago we had celebrated because Jake hit the 25 lb mark - 25 lbs and 1 ounce! He hit the 15th percentile!!! Oh man, that was wonderful. Then Jake got a cold and started vomiting more...and weighed in almost a pound less 3 days before our vacation, and stooped back down to the 3rd percentile. Oh :( I didn't post it on here because I wanted nothing to get our moods down for vacation. We changed his feeding plan again - he is now getting 1300 ml of high calorie fluid in his G Tube each day, broken up into 5 feeds - the first at 6 am and the last at 11 pm. So...if Jon and I look zombie like - this is why! Jake is going to be weighed in again this Thursday...I'm almost sick to my stomach thinking about it. But I think he may have gained, even though the vomiting has not stopped. It's a almost daily hassle for him and Dr. P his G Tube doctor prescribed him a new med today that we will try to see if it will help with the vomiting. It's a new one that Jake has never had before - the other 3 reflux meds we have tried have not really worked for him. Any prayers for weight gain would be so much appreciated. <br />
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If you are able to give blood, check this out...<br />
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It's a 2 day event and our goal is 100 donors. You don't have to be local to us to donate in Jake's honour. Here's what you do if you live away - <span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">To register go to </span><a forcediv="true" forceinline="true" href="http://l.facebook.com/l.php?u=http%3A%2F%2Fwww.blood.ca%2Fjoinpartnersforlife&h=bAQG1g_QXAQEopi0ubaUhCEa5o_pGyQkm559E1Hcvdzg-gA&enc=AZM0zDhou5WJbsD9TgRs2TqN2OkI6v8iy1aN1cvhgzJy5HDVONGj-CBxgHHlqc3KlFih8QiicYYFgezG16G2wilGrsPYEGDnWPUlW0xp4jQUHIUj7336uNs2qiJ-B0AOm6U7YxWRczA94Nk5ydGo6TElakiLFxcRG77A1DW0NRosww&s=1" original_target="http://www.blood.ca/joinpartnersforlife&h=baqg1g_qxaqeopi0ubauhcea5o_pgyqkm559e1hcvdzg-ga&enc=azm0zdhou5wjbsd9tgrs2tqn2oki6v8iy1an1cvhgzjy5hdvongj-cbxghhlqc3klfih8qiicyyfgezg16g2wilgrspyegdnwpulw0xp4jquhiuj7336uns2qij-b0aom6u7yxwrcza94nk5ydgo6telakilfxcrg77a1dw0nrosww&s=1" rel="nofollow" saprocessedanchor="true" style="background-color: white; color: #3b5998; cursor: pointer; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px; text-decoration: none;" target="_blank">www.blood.ca/joinpartnersforlife</a><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;"> and use NLHE541250. If people don't have their donor card # tell them to select that they are a new donor. People can donate across Canada and still be counted!!!! Given that the average donation is 3 pints of blood, if 100 people donate that will be 300 pints to save the lives of other Canadians. We can do this guys! Join the FB group and let us know if you donate, and also please share the event with all your friends! </span><span style="color: #141823; font-family: helvetica, arial, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;"><a href="https://www.facebook.com/events/460072620837670/">2nd Annual Blood Donor Clinic In Honour of Jake</a> .</span></span><br />
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<span style="color: #141823; font-family: helvetica, arial, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;">We are also waiting on the results from genetic testing for Jake. Some of you will know that hereditary hearing loss runs in my family - Georgia was tested as a baby and does not carry the gene. Now we are waiting to hear if Jake is a carrier, if he is he will experience some degree of hearing loss. There was further examination of Jake's DNA also done, but this test result will take much longer - they are basically looking to see if there are any abnormalities that would point to a reason for the development of his heart condition. I'm fully not expecting that test to show anything - as is the doctor. The hearing loss has been a source of some anxiety for me lately though, although I cope well with my profound-severe loss I don't want that for my son. Please pray that this test comes back negative. </span></span><br />
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<span style="color: #141823; font-family: helvetica, arial, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;">Father, I pray that you will cover this child with Your love. Psalm 33:22</span></span><br />
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<span style="color: #141823; font-family: helvetica, arial, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;"><br /></span></span>Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-66673466401340802015-07-27T18:26:00.001-07:002015-07-27T18:40:21.464-07:00We will see you again.<div class="separator" style="clear: both; text-align: center;">
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Earlier this year I heard about the Dream Fund's event Wings for an Angel, and I loved the idea so much that I decided we needed to honour some of the angels who have touched our lives. Wings for an Angel is a province-wide butterfly release that gives you the oppourtunity to honour someone - alive or deceased. In our case we honoured 5 individuals - 3 heart warriors, the baby that I lost in 2012, and Mark Jackman. <br />
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In our journey with Jake's congenital heart defect we have met so many families who have been touched by this monster. CHD is the number one killer of children before their first year of age - did you know that? More children die from CHD's each year than from all types of childhood cancer combined. So I thought with this butterfly release, and the honouring of 3 of the babies we met who have passed away because of CHD related illness that this would an opportunity to have those children remembered - because I know that their families want their names said, and their stories told. These paragraphs and pictures will not do justice to their beautiful lives, but it will touch on their strength and courage and absolute beauty. The world needs to know these stories - CHD needs more research and funding. Please whisper a prayer for these families, and remember these beautiful faces with them - their bodies are now whole and there is no more pain for them, but their absence leaves a hole in the hearts of their families. <br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">Ava Samatha Grace or “Birdy” as her family like to call her - was born December 4, 2012. She was born with a severe congenital heart defect called hypo-plastic left heart, where only the right side of her heart was viable and working. She had open heart surgery at 2 days old, but by the time she was 6 months old her heart was failing and it was clear she was going to need a heart transplant. She was put on the transplant list, but two months later, on August 15, 2013, Ava flew home to heaven where God welcomed her with open arms and gave her a new heart, and a new body that would never perish or fade. Ava is sadly missed, but she was such a gift and blessing from God that now all we can do is be thankful for the time that we had with her, and for what she taught us. Her family knows that they will never forget her.</span><br />
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<span style="color: #222222; font-family: arial, sans-serif;"><span style="background-color: white; font-size: 12.8000001907349px;"><b><br /></b></span></span><span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif;"><span style="font-size: 14px; line-height: 19.3199996948242px;">Gideon, which means Mighty Warrior, was born with a congenital heart defect February 25, 2014 and lost his battle May 7, 2015 after 11 surgeries (four of which were open heart) and spending his entire life in hospital. Gideon received many blood transfusions over the course of his life and with a whole bunch of help his mom would like to give back. Each day blood donations help save lives. Please consider donating in honour of Gideon and help save a life. To donate, make an appointment with Canadian Blood Services and give them the number INHO368016 before you make your donation then it will count towards Gideon's Mother's goal of 409 units of donated blood by the end of 2015. Join his page </span><a href="https://www.facebook.com/mightywarriorblooddrive?fref=ts" style="font-size: 14px; line-height: 19.3199996948242px;" target="_blank">The Mighty Warrior Blood Drive</a><span style="font-size: 14px; line-height: 19.3199996948242px;"> on Facebook to show your support!</span></span><br />
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<span style="background-color: white; color: #141823; font-family: helvetica, arial, sans-serif; font-size: 14px; line-height: 19.3199996948242px;">Gabriel was born with Hypoplastic Left Heart Syndrome which means the left side of his heart did not develop... along with this complication the heart tried to compensate building extra routes to transport blood from the other side of the heart. Although it tried to complete itself... it in fact made more complications by forcing too much blood to one area of the heart. Gabriel was 11 months old when he lost the fight and went to heaven. </span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;"><b>Matthew 18:1-4.</b></span><br />
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<span style="background-color: white; font-family: Corbel, Verdana, sans-serif;"><b>At that time the disciples came to Jesus, saying, “Who is the greatest in the kingdom of heaven?” And calling to him a child, he put him in the midst of them and said, “Truly, I say to you, unless you turn and become like children, you will never enter the kingdom of heaven. Whoever humbles himself like this child is the greatest in the kingdom of heaven.</b></span><br />
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<span style="font-family: Corbel, Verdana, sans-serif;"><span style="background-color: white;">Rest in peace little ones, inside the fold of God's loving arms. </span></span><br />
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<span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 12.8000001907349px;">Ava, Gideon, Gabriel, Baby Anstey and Mark. We will see you again.</span>Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-30128809639948526142015-06-23T18:47:00.002-07:002015-06-23T18:55:08.083-07:00Celebrating Big Sis<div class="separator" style="clear: both; text-align: center;">
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See that beauty? She's about to graduate from Kindergarten, and I could not possibly be more proud of her. Georgia, if you ever get to read this blog - you are my sunshine, the light of my world - I love you so much. Please don't ever change for the world - you are awesome the way you are.<br />
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Jake is completely in love with his big sis. He follows her around and asks for "sissy" when she is not there...and so often I see him trying to do the things she does. I'm so glad they have each other.<br />
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In regards to my last post, the nose swab came back positive for human metapneumovirus, but by that time Jake had beaten it. He's so tough and strong - his half a heart does not hold him back! Shortly after that Georgia came down with all the same symptoms, but of course didn't need hospitalization, and it seems like for the moment we are in the clear in our house. I probably shouldn't tempt fate there -- knock on wood.<br />
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Another Heart Mom shared a verse today that I needed to hear -- sometimes this life is completely overwhelming. Sometimes I just forget to wait on the Lord, and spend days, or weeks plowing straight through - until it becomes too much. And eventually it always becomes too much.<br />
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<span style="font-family: Helvetica Neue, Verdana, Helvetica, Arial, sans-serif;"><span style="line-height: 24px;">The thing is - when I pack my diaper bag to leave the house, I need to pack a G Tube replacement kit, a feeding pump, feed bag filled with special formula and syringes for flushing....For some reason I was struck by that this week. It's not "normal" but it is my norm. My diaper bag is HUGE :) Today I feel fine about it, but some days it just strikes me as incredibly unfair -- for Jake. On the outside he's Mr. Perfect but there is so much maintenance that goes on behind the scenes. I find myself praying daily for guidance, strength and acceptance -- especially when the feeding pump keeps kinking up and it takes 2 hours to get 300 ml into Jake, or when the feeding tube won't connect correctly and I find Jake standing in a puddle of stomach contents crying because his socks are wet when I've only left the room for 2 minutes. Does that make me ungrateful, feeling this way sometimes? I hope not. Because I know how blessed I am. I wouldn't trade my reality for anyone else's. I am blessed and my cup is so full.</span></span></div>
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<span style="font-family: Helvetica Neue, Verdana, Helvetica, Arial, sans-serif;"><span style="line-height: 24px;">The last two weigh in's Jake has lost weight, of course...he's weighing in again on Friday but I'm not holding my breath for a gain. Two weeks ago we were faced with the reality that Jake needs to gain - we have to let go of this pressure we have to get him to eat and drink, and just feed him ourselves and let him gain. So that's what we have been doing. Jake is on a set schedule, so at 10 am, 2 pm, 6 pm and 11 pm regardless of where we are or what we are doing, the feeding pump goes on his back. I've been setting up feeds on the side of the TCH, in parking lots, random driveways, etc. I keep thinking that his legs look a little fuller - please let it be reality not wishful thinking.</span></span></div>
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<span style="font-family: Helvetica Neue, Verdana, Helvetica, Arial, sans-serif;"><span style="line-height: 24px;">I need to send a huge shout out to Little Bay Island's Home League group -- When I wrote my post about the costs of maintaining Jake's feeding tube they all chipped in and sent Jake a check. It's so thoughtful, and self-less and amazing. The amount goes right into Jake's account, and will be used when we need to buy supplies once again. Thank you. Seriously. From the bottom of my heart. </span></span></div>
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Thought I'd share a couple of pics from today with you - it was cold outside so we painted this afternoon. I just love that expression of concentration on Jake's face. The little doll.<br />
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After breakfast Jake vomited his feed. Unfortunately that's not an unusual occurrence and he went straight into the tub after. Here is is just after I took him out and asked him to tell me what a monkey says....The cuteness is too much.<br />
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<br />Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-52364610873076003832015-06-06T19:14:00.001-07:002015-06-06T19:14:37.792-07:00When life gives you lemons...go to the Janeway :)June has not been an easy month for Jake so far...and we're only 6 days in. Jake gave us another reminder of how precious our "normal" days are - the days with no hospital involvement. The bug that Jake has been struggling with for a couple of weeks intensified on Thursday/Friday, and led to Jake being taken to Emerge because of low oxygen saturations. Jake always has low oxygen saturation (100 is normal. Jake lies in 80-90 range most days), but when he gets sick they can really dip and then he needs oxygen assistance for a little while. On Thursday night they dipped to 68-72, then when we were ready to bring him to emerge they recovered into 78 range. Friday they dipped again - 66-74 range, so I called cardiology then packed him up and went to Emerge. After 5 hours of trying various things to see if they would help, iv, bloodwork, nose swab, and blow by oxygen....Jake was admitted to the Janeway for observation overnight. <br />
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After some oxygen, and IV antibiotics Jake seemed to rally - and held his own for the rest of the night with no oxygen required. That meant he could go home today! It was his shortest hospitalization to date, and I'm so thankful for that! Thanks so much to Poppa for all his help - it's hard being in two places at once when Georgia can't be in Emerge or the Isolation area with Jake. We couldn't have managed it without you. Jake was so happy when his Poppa came in - with new dinkies for him to play with, of course. He fell asleep in his Poppa's arms soon after being admitted. <br />
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Jake has a follow up on Tuesday to get his blood levels rechecked (both white blood cells and platelets were low), and follow up with the admitting pediatrician. He's on stronger antibiotics here at home, because we still don't know if it's viral or bacterial. <br />
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As you can see...Jake is happy to be home :)<br />
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It's funny the moments that stick in your mind...since we've been home I keep having this flashback. When the nurses were attempting Jake's IV (Jake is an extremely difficult poke), I was trying to comfort him while holding his arm in place. It was too hard to look at his face, so I looked down at the table and noticed that his ear was filled with tears. It was a pool of tears - my heart broke. <br />
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The nurses always say it's harder on the Mom than on the kid, but I don't know. I think in the case of a kid like Jake who is always at the hospital and frequently being poked and prodded - it's harder on them. My prayers lately have been focusing on Jake's mental health and strength - I don't want him to be a child who fears everything, who expects the world to hurt him. That's not right. <br />
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Tonight as I try to calm my mind to go to sleep, I'm rewriting this verse for Jacob. And for Me. And for Georgia and Jon.<br />
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<h1 class="passage-display" style="background-color: white; box-sizing: border-box; font-family: 'Helvetica Neue', Verdana, Helvetica, Arial, sans-serif; font-size: 14px; font-weight: 500; line-height: 1.1; margin: 0px 0px 20px;">
<span class="passage-display-bcv" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline; font-size: 18px; margin: 0px; padding-right: 10px;">Psalm 18:2</span><span class="passage-display-version" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; display: inline;">New International Version (NIV)</span></h1>
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<span class="text Ps-18-2" id="en-NIV-14121" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;"><span class="versenum" style="box-sizing: border-box; display: block; font-family: Arial; font-size: 12px; font-weight: bold; left: -4.4em; line-height: 22px; position: absolute; top: 0px; vertical-align: top;">2 </span>The <span class="small-caps" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-variant: small-caps;">Lord</span> is my rock,<span class="crossreference" data-cr="#cen-NIV-14121A" data-link="(<a href="#cen-NIV-14121A" title="See cross-reference A">A</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> my fortress<span class="crossreference" data-cr="#cen-NIV-14121B" data-link="(<a href="#cen-NIV-14121B" title="See cross-reference B">B</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> and my deliverer;<span class="crossreference" data-cr="#cen-NIV-14121C" data-link="(<a href="#cen-NIV-14121C" title="See cross-reference C">C</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span><br />
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Ps-18-2" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">my God is my rock, in whom I take refuge,<span class="crossreference" data-cr="#cen-NIV-14121D" data-link="(<a href="#cen-NIV-14121D" title="See cross-reference D">D</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span></span></span><br />
<span class="indent-1" style="-webkit-font-smoothing: antialiased; box-sizing: border-box;"><span class="indent-1-breaks" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; font-family: monospace; font-size: 0.42em; line-height: 0;"> </span><span class="text Ps-18-2" style="-webkit-font-smoothing: antialiased; box-sizing: border-box; position: relative;">my shield<span class="footnote" data-fn="#fen-NIV-14121a" data-link="[<a href="#fen-NIV-14121a" title="See footnote a">a</a>]" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;">[<a href="https://www.biblegateway.com/passage/?search=Psalm%2018:2#fen-NIV-14121a" style="-webkit-font-smoothing: antialiased; background: transparent; box-sizing: border-box; color: #b34b2c; cursor: pointer; text-decoration: none; vertical-align: top;" title="See footnote a">a</a>]</span><span class="crossreference" data-cr="#cen-NIV-14121E" data-link="(<a href="#cen-NIV-14121E" title="See cross-reference E">E</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> and the horn<span class="footnote" data-fn="#fen-NIV-14121b" data-link="[<a href="#fen-NIV-14121b" title="See footnote b">b</a>]" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;">[<a href="https://www.biblegateway.com/passage/?search=Psalm%2018:2#fen-NIV-14121b" style="-webkit-font-smoothing: antialiased; background: transparent; box-sizing: border-box; color: #b34b2c; cursor: pointer; text-decoration: none; vertical-align: top;" title="See footnote b">b</a>]</span> of my salvation,<span class="crossreference" data-cr="#cen-NIV-14121F" data-link="(<a href="#cen-NIV-14121F" title="See cross-reference F">F</a>)" style="box-sizing: border-box; font-size: 0.625em; line-height: 22px; position: relative; top: 0px; vertical-align: top;"></span> my stronghold.</span></span></div>
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The Lord is Jacob's Rock, Jacob's Fortress and Jacob's Deliverer;</div>
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my God is Jacob's rock, in whom Jacob takes refuge,</div>
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Jacob's shield, and the horn of his salvation, his stronghold.</div>
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The Janeway telethon is currently underway, and that hospital has played a crucial part in Jake's journey. Cardiology, Dietician, Occupational Therapy, Audiology, Gastrointestional, Perinatal, X Ray and Cat Scan, Emerge....I don't know where Jake would be without them. Especially Dr. T - we are so thankful for you. </div>
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To make a donation to the Janeway, <a href="https://9643.thankyou4caring.org/">click here</a>. </div>
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Check out this year's theme song...Bounce Back...and be warned...I cried...</div>
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/rASBbQCOHT0" width="560"></iframe>Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com1tag:blogger.com,1999:blog-2392811845304599005.post-54627993694525145792015-06-04T13:49:00.000-07:002015-06-04T13:50:55.805-07:00Oh dear...Our excitement over Jake's smaller nutriport feeding tube was short lived...The Nutriport was excellent in that it didn't make Jake's skin sore and it was small and unobtrusive but...it has now malfunctioned twice - the balloon keeps bursting, and then the tube is falls out. When it comes out this is what Jake's belly looks like - and yes, that is milk in his stomach that you are seeing...<br />
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The first Nutriport lasted 2 weeks to the day before falling out, and we were unable to reinsert it at home and then the doctors were unable to reinsert it at the Janeway. Jake was throughly traumatized by all the pain from each attempt - it was unbearable. He cried himself to sleep while still in the examination room, and then would shudder and cry each time I reached towards his belly after that. Jake went 24 hours with a foley catheter in his stoma before the swelling went down enough that Dr. P was able to get it back in. Now, 6 days later - the balloon burst again. This time we were able to get the surgical g tube in place here at home with minimal pain for Jake. Now, we have to buy new tubes to have on hand in chase the balloon inside the surgical tube also breaks. We are not buying another Nutriport though - they run at $185 plus tax and that cannot be maintained at several changes each month. We are considering trying the Mic Key although its very similar to the Nutriport, but for now we're just ordering one of the Mic G tubes (the long surgical one that Jake was first given when he got his G Tube), and waiting to hear whether our insurance company will help with the cost associated with the G Tube. Jon called today to check on that and the company rep told him that she had no idea if G Tubes were covered, but none of the 3 kinds Jon listed out for her were in their system. That doesn't sound promising. Jon was told to compose a letter, outlining the need for the G Tube and accessories, and enclose the prescription. Upon reciept of that letter, the company will then determine if they can help us out with cost. So, a answer is a little far away right now, but it is coming. Jake had a good look at the broken feeding tubes today...<br />
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In the meantime, my priority is keeping Jake happy and pain free - and if he needs the larger tube to make this possible, then he'll keep the larger tube. </div>
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Since my last post Jake has gained a pound! Really, he gained a pound and 5 ounces at one weigh in but a week later had lost the 5 ounces so it was exactly a pound of gain. He hit 23 lbs 0 oz on the button. Tomorrow is weigh in day again, I'm hoping for another gain, no matter how small! </div>
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In even better news, we learned that Jake's pacemaker placement is intra abdominal - meaning that even though it looks like it could come through his skin, it is actually held in place by a pocket of muscle that was hollowed out of his stomach. It was an enormous relief to read these words in an email from Jake's cardiologist. <br />
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Jake has been sick for a couple of weeks, and the cough seemed to worsen this week with the fever reappearing so he is now on antibiotics - but he has not been himself at all. Here he is napping, while having a snack and sleeping off a temperature. Poor little mite.</div>
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Note, that is the Nutriport in the picture above - Jake's current Mic - G feeding tube does not look like that!</div>
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Thank you so much to everyone who rallied around Jake last week he was going through the painful tube change process. It is so appreciated, and such a comfort. If anyone does not believe in the power of prayer, they need to spend a week or two in my life....</div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-5631889533180979592015-05-13T18:04:00.000-07:002015-05-13T18:04:11.293-07:00Normality 2.0In my last post I shared the new normal that my family has found, with Jake being the healthiest he has ever been...then shortly after that my little man had to challenge us once again. Jake has been waking every morning with puffy eyes, and when this swelling started we contacted Jake's cardiologist who wanted him seen for immediately for an echo and a CT scan because the concern was that the swelling could be caused by a compromise of his Superior Vena Cava, which drains to his lungs because of the connection made during the Glenn open heart surgery. If there was a blockage, then the pressure would move back upwards and could show in swelling in the face. We spent 7 hours at the Janeway that day, with Jake fasting for sedation, with an unsedated echo followed by bloodwork, 7 pokes for an IV and then sedation for the CT Scan. That day passed in a haze - I genuinely felt like I could puke at point. Jake had a rough go of it, feeling very upset over all the procedures and his fear of hospital workers came back full force. That day it was raining outside, so Jake wore his rubber boots. And he insisted...demanded...that he be allowed to keep his boots on. He had his boots on for all procedures except the CT scan :) I believe that was his way of keeping a small measure of control over his life, when everything else was spiraling for him. Here he is with his boots, and his cars - waiting on the results of his echo.<br /><div>
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When the cardiologist came to us at the end of the day with the results, she told us that we should be saying prayers of thankfulness - there was nothing wrong with Jake's heart. His heart is holding stable, and the CT showed a great surprise...Jake's severely narrowed left pulmonary artery (which was 4.5 mm in size at the last CT scan) had GROWN. GROWN! This growth was a huge surprise for everyone - but something to be celebrated. I don't have the exact measurement yet, but the estimation was that it had gone from 50% the size of the normal pulmonary artery - to around 75% the size of the normal PA. That is nothing short of miraculous in my mind - Jake has been having monthly echos ever since his Glenn surgery because of this narrowed LPA, and the dangers it presented. Now those dangers are less. Some of you may remember that the team at SickKids attempted to repair this narrowing with a patch last year during his Glenn procedure, but the patch failed. The plan is now to attempt a new fix during his Fontan open heart procedure, likely in the Fall of this year. With this growth I have hope that maybe a fix won't be necessary, or at least won't be as complicated. The final stage of Jake's heart repair is complicated enough with any added issues. Please, if you are someone who regularly prays for Jake - add this to your prayer list - more growth for his LPA. Thank you Lord. You have proved your faithfulness to Jake and our family over and over again. I praise you for that.</div>
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Jake is still waking in the morning with puffy eyes, and we have not figured out why. Allergy meds are not being responded to - so it's unlike to be an allergy but we don't know for sure. Celiac disease was ruled out in the bloodwork. We don't have the results of the thyroid bloodwork yet. But, Jake has been referred back to Gastroenterology to see if they have any answers. So, we wait...</div>
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While we're waiting we have been enjoying more of our normality...and discovered that Jake has a great love for the outdoors. Some days we spend all afternoon outside, even though it is still super cold here - we bundle up and live outside or on the patio for hours at a time. </div>
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We can't get enough of our wonderful life together.</div>
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Today, Jake got rid of the enormous surgical g tube, and now has a Nutriport G Tube. The difference is mainly one of size, and comfort for Jake. It also means we don't need to use tape on his sensitive belly skin. I took a picture before it was placed in Jake.</div>
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See that tiny thing in the middle of the picture? Shaped like the letter T? That's a nutriport, and it's now in Jake's belly. The Doctor took the water out of the balloon that was holding the surgical one in, then removed the old tube. Then he slipped the Nutriport into the hole with a little bit of difficulty since the hole is so small (and Jake had to be restrained by 3 adults to make this happen, he was so upset). The nurse then filled the nutriport's balloon up with water to hold it in place and voila! A new, skin level G tube for Jake. </div>
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Here's a file picture of what the tube looks like when the balloon is filled with water. The flat part is what we see on the outside and the balloon in inside Jake's body.</div>
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We are adjusting to it, and learning how to use the attachments that come with the Nutriport. Next on our list is to find a supplier for this new G Tube because it is not one used at SickKids, where we buy the rest of our supplies. We're waiting for a prescription, then this Momma will set out on a mission to make that happen. These are quite expensive, but we need to have a few on hand in case this one is pulled out. Jake's new higher calorie formula is also significantly more expensive, and since we are not a two income family we have to carefully budget for these expenses. </div>
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We are still struggling with weight gain, in a big way. There has been no weight gain. For every gain Jake has made, the following week there has been a loss. We see the dietitian weekly because of this. There are several concerns here - Jake is so small (roughly 2-3 on percentile chart), for Jake's open heart surgery in the Fall the recommended weight is 35 pounds which means Jake is 14 pounds too small. And today the general surgeon added a new concern to our list. It was something we had never heard of before - in people with very little subcutaneous fat layer (read: people with no fat under their skin), the pacemaker can actually erode the skin. I literally turned to the doctor and said "what?" when he said that. Then he reiterated, and I said "you cannot be serious". Basically what he said is that the pacemaker is protruding so far from Jake's belly now, because he is growing length - wise but not gaining any actual weight while doing so, that it may actually come right through his skin if he doesn't start gaining weight. </div>
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We already started a higher fat diet with Jake, and if the results for this week don't show any improvement when he is weighed on Friday, then another step will need to be taken. It's a struggle because we can always give him more of his high calorie formula, but that means he will no longer feel hunger and will stop eating. And we have fought so hard to get him to a point where he will eat well. </div>
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Whew! There's a big update on all that is new with us right now. We're still taking it one day at a time, and trusting God through it all. Jake is no longer happy to walk into the Janeway though - and today after his new tube was inserted he fell asleep. When we got home I laid him down and then went to hook up his pump to his new G Tube. As soon as I touched the site Jake stirred in his sleep, and said "no!" :( My heart breaks for all the suffering - so much suffering. Here are some pics from today at the hospital - as you can see, Jake is not his smiley self when he is there. Please pray for comfort and strength for my little warrior, and for the bruises that my heart gets every time I have to hold him down for something that is hurting him.</div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-42711251885229471432015-04-21T16:34:00.003-07:002015-04-21T16:34:48.992-07:00Normal.<span style="font-family: inherit;">Today started out with an email from a Heart Mom friend I met at Sick Kids when Jake was first born, saying she had checked my blog and there were no new updates...so she emailed me instead :) I found myself typing my response to her beginning with the line - "<span style="background-color: white; color: #222222;">You know what? For the first time since Jake's birth our life is normal. Really normal. I can take him places, feed him without getting stared at, he's healthy and happy and I'm not constantly afraid."</span></span><br />
<span style="font-family: inherit;"><span style="background-color: white; color: #222222;"><br /></span><span style="color: #222222;"><span style="background-color: white;">And that's the truth. Since getting the G Tube, and coming out of isolation I feel like Jake and our family have turned a corner. I used to be constantly afraid and anxious - living with the What If scenarios running through my head all the time. That's no longer the norm. I still have those moments, or even days, but they are less and less. I have so often had people tell me how strong and brave I am since this journey with Jake began, but truly the strength and braveness did not come overnight - they were a work in progress since that day that I lay crying on the table during the ultrasound while a room full of people passed scary medical terminology back and forth and tried to puzzle out what they were seeing inside my 21 week old unborn baby. My faith has been a work in progress since that day as well - and the foundation has held secure for us - God is good.</span></span></span><br />
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<span style="font-family: inherit;"><span style="color: #222222;"><span style="background-color: white;">Since leaving Sick Kids and coming home at the end of February so much has happened - Jake's 2nd birthday! His second Heartiversary! His first time in the snow or on a slide! His first skinned out knee! Awesome and amazing. </span></span></span><br />
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<span style="background-color: white; color: #222222; font-family: inherit;">We are adjusting well to life with a G Tube instead of a NG. I love seeing Jake's whole face, and he loves his newfound freedom as most feeds are done through his backpack pump while he plays. Here, sister put on a burn net too so Jake wouldn't feel different - she did this all on her own. Heart melted.</span><br />
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<span style="background-color: white; color: #222222; font-family: inherit;">Jake's first time in the snow...we went to Bowring Park!</span><br />
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<span style="background-color: white; color: #222222; font-family: inherit;">Jake turned 2. My mind always drifts back to being told that my baby likely wouldn't survive to be born - and now he is TWO! Here he is with his birthday cake the day before the big party!</span><br />
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<span style="background-color: white; color: #222222; font-family: inherit;">Georgia is also thriving. She is doing really well in Kindergarten, and loves her teacher. Today was the Scholastic book fair and I went with her and we chose books together - it was awesome. Georgia has also started coming to many of Jake's appointments with us, since school is only a half day. The shot below was a day we had two appointments and some time in between - so we went to Boston Pizza for lunch, and Jake was having his nap on the seat next to my legs. Wonderful, lovely moments that I never want to forget.</span><br />
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<span style="background-color: white; color: #222222;"><span style="font-family: inherit;">That is not to say that life is perfect, life is never perfect. But I'm so filled with </span>thankfulness<span style="font-family: inherit;"> every single day. Jake has been having issues with weight gain - he lost over a pound during the period leading up to and after the G Tube surgery, and he has been struggling to gain it back. He's dropped to the 2nd or 3rd percentile on the growth chart, and because of that needs to see the </span>dietitian<span style="font-family: inherit;"> every week, he keeps resisting weight gain and refuses to hit the 22 pound mark. We are in the process of changing his formula a little - hoping an extra hundred calories or so each day will help him gain. But, the good side of this has been Jake's eating - he is constantly eating! Precious jaws. He absolutely loves chocolate, and our </span>Easter<span style="font-family: inherit;"> stash is quickly dwindling because of that! He really needs to gain weight, the optimal weight for his upcoming open heart surgery is 35 pounds. 35 pounds! And he's been 22 pounds or less for the last 10 months. I don't see him gaining 13 pounds in the next six months without a miracle. So please pray, please continue to pray - for weight gain and strength for Jake.</span></span><br />
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If you could also whisper a prayer for two Heart Warriors who are struggling right now at Sick Kids - Gabriel and Gideon, both of whom received a prayer shawl from St. John's Temple on our last trip to Toronto. God knows their stories, and he feels the pain of their parents. Asking for a miracle for both of them. <br />
<span style="background-color: white; color: #222222;"><span style="font-family: inherit;"><br /></span></span>Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-73714796059259886992015-02-22T19:24:00.001-08:002015-02-22T19:24:24.625-08:00G Tube!Wednesday morning we made our way to Sick Kids for Jake to be admitted for his laparascopic Gastrointestinal Tube with Dr. Pierro. Jon and I were sick to our stomachs with anxiety and worry - all Jake's other procedures have been life saving, and there was no choice about him needing them. This procedure was different - it wasn't life saving. I guess you could say it was quality of life saving. The other huge difference was Jake's maturity - Jake has developed an intense fear of nurses and doctors as a result of this surgery. All a nurse needs to do is walk into the room, and Jake immediately starts screaming and saying "no." They don't even need to touch him! I swear he gave his lovely, caring medical team complexes with all the fear he showed towards them. I was very thankful that we were given the option of having a mild sedation done on Jake in the waiting room so that he was calm in our arms before they took him back to the operating room. Jake went into the OR with his beloved blankie and a picture of Georgia, they were beside him on the table for the procedure. I told him before the nurse took him back - "Sister is going to be with you the whole time", and Jake responded with a very serious sounding "okay" :) My sweetheart. Here we are in the waiting room, you can see the anxiety on Jake's face - he knew something big was about to happen.<br />
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The OR waiting room is not a easy place to be. Every person there is so worried and anxious, it's a very gloomy room to be in. Thankfully the procedure took only 1.5 hours and Jake was extubated before he came out of the OR. When we were finally able to see him he held up both hands to me, and then fell back to sleep. A few minutes later he opened his eyes and Jon said "Hi, little guy", and Jake lifted his hand and waved to his Dadda. So sweet. Here he is still in Recovery and very sleepy. I had asked the nurse to make sure he had his blanket when he woke up, I'm so thankful she remembered that.<br />
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After a short time in Recovery Jake was moved to 5B Stepdown, and spent one day there. That's a hard room to be in because there are 5 other beds, and each of them held another child including two infants - Jake couldn't sleep well with all the noise and lights. Add in to the mixture that Jake was NPO (Nothing Passes Orally - he wsn't allowed to eat or drink) for that whole day and half of the next day, and it was a rough couple of days. Day 2 after surgery Jake had tylenol for his pain at 6 am, and that was the last dose he needed. It's really awed me how strong he is, once again. There were two incisions besides the G Tube area, and Jake seems to only feel discomfort or pain if we are cleaning the area/bandaging or it it's impacted in some way. We have noticed that if he drops a toy he'd rather have us pick it up then bend down himself - smart boy. G Tube feeds were slowly started that day, and Jake handled them very well - knock on wood, but since getting the G Tube Jake has not vomited once. Not once! At this point Jake still had his NG tube in, as they didn't want to pull it out until they knew that he would be able to tolerate feeds by G Tube. When feeds started, out came that NG Tube - in fact, I pulled it out myself! That was such a happy moment for us. My sweetheart is amazing. I love him so much - here he is showing some love to his Dino baby...<br />
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Day 3 after surgery Jake was able to work up to his full feed amount of 1000 ml of liquid and his IV got removed. He visited the playroom and the cafeteria with us and then we were discharged around suppertime to go back to Ronald Mcdonald House. This was both awesome and scary at the same time, as Jon and I became responsible for caring for Jake's wound, and the cleaning/bandaging process. It's so scary handling the tube and untaping the bandages - it's not very secure until it heals. It would be easy to pull it out - and it's a long tube so Jake could pull it out also if he got a good grip on it. If that happened, the site would close over in minutes and we'd be back to square one. We have been given the option of getting a Mickey Button placed in six weeks to replace the long tube that is now there. We're seriously considering it, and hoping that that can be done in St. John's.<br />
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I asked Jake yesterday where is your tube, and he reached up and touched his cheek then looked puzzled...today I asked him where is your tube and he lifted up his shirt and showed me :) He gets it now. Some of you are probably wondering what a surgical G Tube looks like, well this is it. This is 4 days post op so the sites are still very fresh. It's not as scary as it looks, but it's a big tube on a little body so it's very prominent in the pictures.<br />
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When doing a feed, this is what it looks like hooded up to his pump...<br />
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Tomorrow morning we are doing the G Tube parent class, a four hour class that will teach us everything we need to know. Baby Owen's Mom Grace is babysitting Jake for us so that we can do this, we are so thankful for that. And then, on Tuesday we get to go home! This was a much shorter stay then we expected and it has been straightforward like we prayed it would be. Once again we have answered prayer, once again we have so much to be thankful for, once again God has proven that He is in control. And now...we can see all of Jake's beautiful face every single day. I can't wait to see what Big Sis Georgia thinks of that...<br />
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<br />Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com1tag:blogger.com,1999:blog-2392811845304599005.post-54706679707577656042015-02-17T10:02:00.000-08:002015-02-17T10:02:23.949-08:00Just getting through the day...<div style="margin-bottom: 0in;">
What does a Mom do on the day before
her child's surgery? The most minor surgery her child has had in his
22 months of life, but still a surgery with it's own unique set of
risks and possible complications. This Mom cleans the room at Ronald
McDonald House, does laundry so every one of Jake's beloved blankies
are clean and ready to be snuggled, washes 3 days worth of med and NG
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prays, worries, takes a hundred pictures of his beautiful
face, has a bad stomach, applies Stress Away oil, can't sit still, wonders what life will be
like without the NG, fidgets, prays, worries...</div>
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Jake's surgical G Tube procedure is
tomorrow at 10:30 Toronto time, so 12:00 in Newfoundland. I'm
dreading this procedure – Jake is older now, he has his own loves,
fears, anxieties and I can't explain what is about to happen to him.
I can't explain the pain he will feel when he wakes up, and I can't
take away his worry when he opens his eyes and Mom is not by his
bedside.
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Being me, I have to Google and read and
understand everything I possibly can. Here is a brief description of
the procedure Jake will have tomorrow. His G Tube is being done
laparoscopically through his belly button instead of the usual PEG
procedure – because of the proximity of his pacemaker to his
stomach. There is a possibility that the surgeon will need to use a
Open procedure where a larger incision is made, if the laparascopic
method fails or is too complicated. I'm praying that is not
necessary, but we won't know until the surgeon is finished.
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<span style="color: black;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="font-size: xx-small;"><b>Laparascopic
Technique</b></span></span></span></h4>
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<span style="color: black;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="font-size: xx-small;">The
laparascopic technique is done by making several small incisions in
the abdomen and inserting a tiny telescope that helps surgeons see
the stomach and surrounding organs. </span></span></span>
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<span style="color: black;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="font-size: xx-small;">In
the laparascopic technique, an incision is made in the umbilicus, or
belly button, and a blunt-tipped needle is passed into the abdominal
cavity. Then carbon dioxide gas is used to expand the abdominal area
during the procedure so the surgeon can have a clear view of the
organs.</span></span></span></div>
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<span style="color: black;"><span style="font-family: Verdana, Arial, Helvetica, sans-serif;"><span style="font-size: xx-small;">Next,
a wire is threaded through the needle and the G-tube is guided along
the wire into the stomach with the help of small instruments inserted
through other small incisions. Stitches and pressure from a tiny
balloon are used to keep the stomach in place against the abdominal
wall. (source:
http://kidshealth.org/parent/emmi_kids/gastrostomy.html?tracking=P_RelatedArticle)</span></span></span></div>
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<br /><br />Please keep Jake in your prayers tomorrow. Remember myself and Jon as well, as we physically cringe at the thought of the scalpel slicing into Jake tomorrow, and neither of us feels prepared for this even though it has been a very long time in coming. My hope and trust is in the Lord. Always. He has Jake in the palm of His mighty hand every moment of every day. <br />
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Jake is enjoying his time at the House, although he gets very bored when I keep him cooped up in our room as much as possible in fear of germs. Here's a couple of shots of him around RMH. Little doll. And the next picture I post on here maybe Jake will have no tape on his face!<br />
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-7426840589629799922015-02-09T12:04:00.001-08:002015-02-09T12:04:20.268-08:00February is Heart MonthJake's NG tube issues have escalated over the past couple of weeks. We have been struggling to keep Jake's fluid intakes to a level that would prevent dehydration because he has been vomiting the majority of his feeds. This landed Jake in the emergency room over a week ago, and resulted in a new feeding plan - instead of feeding Jake 250 ml in four NG feeds a day, we were to feed Jake every hour during the day in much smaller amounts. Jake's goal is 1000 ml, but we have not been able to achive this without vomiting even with the smaller amounts. If we hit 700-750 ml, it's been a good day. The obvious downside is that Jake spends the majority of his day in the high chair, with me or Jon sitting by his side watching for signs of vomiting. <div>
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The loss of calories has meant a weight loss for Jake too. In the last week he has lost 13 ounces, but I weighed him this morning and he seems to be holding steady at just above 21 lbs now. We are now 3 days away from our flight to Toronto and the elusive G Tube. I have been feeling anxious for the last week or so, with a nagging feeling that the surgery was not going to happen. This surgery has already been postponed 3 times, so I know where the anxiety is coming from. It's just anxiety this time though, it has to be. Feeding Jake every hour makes for an exhausting day for both him and me. Jake is tired of being plunked in the high chair and made to stay there while the calories slowly drip in, and I'm tired of only having half hour stretches of time for anything outside of feeding. Jake's body is at it's limit with this NG. The weather is calling for the biggest storm we've had yet this winter on Thursday. But that had better be over before Thursday night. Our flight leaves at 5 AM on Friday, and I'm desperate enough to pilot the thing myself.</div>
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I had a moment a few days ago where I realized something. Jake is 22 months old, lives in Newfoundland, and has never been in the snow. He's never been sliding or made snow angels, or built a snow man. Georgia does all of these things on a regular basis, but between fear of Jake getting sick, how easily he gets cold, and his isolation for surgeries - it has never happened. We even bought a red baby slide last year, but it's still in our basement and has never been used. So I'm making Jake a promise today. After this G Tube, when we get home, he is going out in the snow. The whole family can go out in the snow for the first time ever. Long overdue! That's something for me to look forward to through this next trip and surgery. Jake in the snow. What a beautiful sight that will be!</div>
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February is Congenital Heart Defect Awareness month, and Jake was present in City Hall when the Mayor proclaimed it to be CHD month in St. John's - it was his only non-hospital public outing in a month. See him sitting up like a little man watching the proceedings...if only he understood...</div>
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Afterwards Jake and 3 other Heart Warriors posed for a picture. From Left to Right we have Isaiah, Sara, Carly and Jake. Rock on, Warriors. <br />
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On Friday NL's Minister of Health, Steve Kent, signed a proclamation that made February 7-14th Congenital Heart Defect Awareness Week for the entire province. Jake missed that because he was at the Janeway, but it's so awesome that it happened. It's a hugely important thing, for CHD to be recognized in this way in our province. As part of CHD week I"ve been taking part in some Social Media challenges, and I'll share some of my posts with you now. </div>
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Every 15 minutes a child is born with CHD. That's 1 in 100 babies.</div>
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And finally...</div>
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This is why I will never stop trying to raise awareness. I will never stop sharing Jake's story, and I will never stop fighting for him. I am a Heart Mom, and I can do this. </div>
Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-91300033987244773372015-01-26T13:51:00.000-08:002015-01-26T13:51:19.076-08:00Hi Friends!<br />
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I have entered Jake in the Mended Little Hearts #rockyourscar contest, so if you can please vote for him at <a href="http://bit.ly/1C8CNR7">Rock Your Scar Contest</a>. Yay, go Superbaby!Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-45013861747180634162015-01-15T11:17:00.000-08:002015-01-15T11:17:07.167-08:00The best laid plans...It's the day before we were supposed to travel to Toronto for Jake's G Tube surgery. You read that right - <i>supposed to </i>- as in we are not flying out tomorrow. It's painful for me to even type these words, but there has been another delay. A delay in October, a delay in December and a delay in January. I've processed this now, but we got the news 4 days ago and it's only now I can sit and type out this post. The surgeon had a personal emergency and has cancelled all of his January surgeries. So...our new date is February 18. That's 4 weeks and 5 days from today. :(<br />
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Our flights have been rebooked, at an extra fee and hassle over the oxygen assistance required for Jake. This will be Jake's first time flying with asthma so his cardiologist has requested extra oxygen for him, and Air Canada didn't like that one bit. After jumping through the hoops (both us and the cardiologist), it's been straightened away. We now fly to Toronto at 5 am on the 13th of February. <br />
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In more positive news, Jake gained 4 ounces last week. He had 6 vomit free days in a row, but has now vomited both yesterday and today so we're back to the struggle. He's come very close to slipping back down to the 20 lb mark. We fought so hard to reach 21 lbs and then 22 lbs, it's so hard for me to see those numbers go down. Keep praying friends, Jake needs to start gaining steady weight. Heart wise things are going really well, Jake had another No Change echo report on Tuesday and after the G Tube heals the plan is to start skipping months for echoes. If all is well, Jake will have a echo every second month instead of every single month. How lovely will that be! And his last echo was done unsedated so the plan is to try for unsedated echoes each time now and only use sedation if he is uncooperative. That's a few steps towards simpler visits to cardiology, and I welcome them with open arms! <br />
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Here's Jake at Cardio this week rocking his "My cardiologist is better than your cardiologist" shirt, and then right before his echo showing off his muscles.<br />
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Since Jake is still in isolation we're spending our days inside for the most part, and trying so very hard to stay well and healthy to avoid yet another delay in surgery. It's a hard battle during flu season, but we're fighting it daily. Last week found us at the Janeway emerge in an isolation room to check out a cough and runny nose that Jake was having. During that stay we had a very unpleasant and panic inducing experience with a young doctor using the words "possible heart failure" to describe the look of Jake's chest x-ray. Those are terrible words to fling at heart mom, especially if there is no basis for them. Once cardiology was consulted we were told that there were no signs at all of heart failure, it was likely a shadow remaining from his struggle with RSV and asthma. I aged 10 years, and I think my mom aged 20 years, while we were waiting to hear if Jake was indeed in heart failure. I hope to never again hear those words uttered in a sentence referring to Jake. Never again. <br />
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So, although I'm sorely disappointed that we are not getting a plane tomorrow I will count my blessings today. A relatively healthy family, a new surgery date, no heart failure, and 4 ounce weight gain. Woo!<br />
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com1tag:blogger.com,1999:blog-2392811845304599005.post-49818986076512374282015-01-05T17:05:00.003-08:002015-01-05T17:05:38.746-08:00January Prayer Request2015 is underway, with a return to normal routines today. Georgia went back to school, Jon went back to work and Jake and I stayed home :)<br />
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I mentioned in my last post that Jake had not been gaining weight well, and had hit the 3rd percentile on the growth chart which is the lowest he has ever been. He was in the 4th percentile at 2 months old when we returned from Toronto. Trying to increase Jake's fluid intake to up his calorie count has failed miserably. Jake started to vomit, often projectile vomiting, daily and sometimes multiple times in one day. This was at the lower feed volume, so we have only reached our target of 270 ml a few times successfully. A major downside of this vomiting is that he has also been vomiting up his NG tube. So he loses an entire feed, and the NG tube at the same time. Not only that, but he has been choking on the NG as it is only coming halfway up so part of it is in his mouth and the other part is still in his throat/nose. It's been awful. In the last 2 weeks we have gone through 7 NG tubes. Normally these tubes are changed monthly. It's horrible. This has resulted in a very upset Jake and very guilty feeling parents. This morning when we replaced Jake's tube he got into his ball pit and crouched down low with his blanket and refused to look at us. He knew what was coming, and he fought with all his strength. I have been doing all NG tube inserts and Jon has been the one restraining Jake while he fights. I wanted to switch jobs, but I am not physically strong enough to restrain him - that's how hard my 21 month old is fighting this NG tube. </div>
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Jake has now been started on 2 reflux medications. We're waiting to see if this helps. But...he just vomited another NG tube, this time only 60 ml into his feed. And I just put that tube in at around 8:30 this morning, so it was in for less than 12 hours before being vomited up. What on earth is happening? So once again he gets only half of his daily fluid requirement. I will have to close my eyes when he is weighed before his Synagis shot tomorrow - I don't want to see that number on the scale. I'm feeling so sad right now. My poor sweet boy. Here's a shot I took this morning before he knew I was about to put the NG back in...My unsuspecting little man.<br />
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Jake's G Tube surgery date is 16 days away. I am asking for big prayers for the next couple of weeks. Jake needs to stay healthy so there is no delay in surgery, and he needs to start keeping his feeds down and his NG tube in - this constant putting it in and having it thrown up is not good for his happiness or his health. Weight gain would be a lovely plus also. Oh my. Please pray. <br />
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Jake has been in isolation for a few weeks now, and we'll continue this until his surgery on the 21st, as much as we can. The only place he's gone is to Nanna's house or Auntie's house. Jake is tired of being cooped up, and routinely will try to put on his shoes or coat, or hold up his hands to us and say "I come" when he sees us getting ready to leave. It hurts my heart. I want to give him the world, but I can't let him out of the house right now. Ugh. It's hard on Momma's nerves too, all this isolation. Every day I try to leave the house at least once, even if its just a drive to Tims or a quick run to the grocery store. <br />
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In happier news, Georgia will be 6 years old on Saturday January 10th, and we celebrated this past weekend with a big party that included swimming, a bouncy castle and minnie mouse with all her friends. It was a good day. <br />
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On Sunday past the message was focused on 1 Samuel 16:7 "man looks at the outward appearance but the Lord looks at the heart". I found my mind drifting a little towards the wondering what God sees when he looks at Jacob's heart. On the outward we see a small little guy, tough as nails, often with a blueish tint to his face, covered in many scars and a big yellow tube and white tape on his cheek. What is on the inside? Brokenness? Imperfection? Strength? A miracle? Marks left by the surgeon, and pacemaker wires attached to his heart? All of my love and faith and hope bound up in half of a precious heart?<br />
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I've said this before, and I'll say it again. The world may see my son as an imperfection, but in the eyes of those who love Jake and in his Creator's eyes he is PERFECTION. <br />
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Check this out...Jake likes to fall asleep in my arms like this...<br />
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And this is the appreciation we got on Christmas morning from Super Baby...<br />
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Even in the middle of my fustrations I am blessed. Blessed. Please pray for Jake and his family, January is going to be a rough month for us.</div>
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Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0tag:blogger.com,1999:blog-2392811845304599005.post-72959459861937808692015-01-01T10:10:00.001-08:002015-01-01T15:24:15.901-08:002015<div class="separator" style="clear: both; text-align: center;">
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Happy New Year from our family to yours. We have no idea what 2015 will bring for our family, just vague events like a G Tube surgery, Georgia finishing kindergarten and starting grade 1, a heart catheterization, possibly the third stage of Jake's heart repair...but really no one knows what 2015 will bring for them and their loved ones. So we take on giant step forward today - happy and thankful. Bring it on 2015, we're ready and God is in control!Lisahttp://www.blogger.com/profile/09437605950592461823noreply@blogger.com0