Tuesday, January 10, 2017

Happy 8th Birthday Georgia!!!

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.

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.

Here is Jake at the ECG Scan, he wanted his own copy to take with him when it was done :)




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.

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.

Here he is on the scale!



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.

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.

His strength is perfect, when my strength is gone.
He'll carry me when I can't carry on.
Raised in His power, the weak become strong.
His strength is perfect.

Perfect for me. Perfect for Jake. Perfect for Jon. Perfect for Georgia. Perfect for all our loved ones and friends.

One moment at a time...Here we go.


Sunday, January 8, 2017

While 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 day at a time, then I need to take it one moment 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.

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...


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.

Breakfast: half a slice of bacon, 1/4 of a cake pop :)
Snack: half a slice of bacon, a few bites of raw carrot
Snack: 9 or 10 Salt and Vinegar Chips
Supper: a few bites of roast beef, several bites of cheese, a little of a bread roll

And now he's sleeping and having his final tube feed of the day.

That's not a whole lot of food for the average 3 and a half year old but for Jake it's HUGE....

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...


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.

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...


Right now as I write this...This is Jake snoozin' on the couch in our room....



Late night hockey with Momma and Dadda in the Jays Care room downstairs...



Playing with his dinkies all along the windowsills of level 4....What a smile!





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.




Sunday, January 1, 2017

God Bless Heart Warrior Jacob

This 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!!!










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.  

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)

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.



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.

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.

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 - Bless Jake's Heart, and I'll do the more detailed posting on here as needed.  

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.