Sunday, August 17, 2014

An anniversary to remember...

On Thursday August 14, Jon and I celebrated 10 years of marriage!  Jon and I have been very fortunate over our 10 years of marriage to have been able to hold on to our love through some tough times.  We've had a lot of joy, some loss, financially good years and financially tight years, 2 cats, 1 dog, one bouncing 7 lb 10 ounce beautiful baby girl, a miscarriage, and then our 8 lb 5 ounce fighting superbaby.  It's been a wild ride, and we're far from perfect but we're holding on for another 10 years now.

We had a great day celebrating the anniversary, but ended the night at the Janeway emergency with Jake.  Flash forward to today, Sunday, and we are still at the Janeway with Jake.  Jake was admitted with a viral lung infection (most likely, we are still waiting for the swab results), he was having laboured breathing and drops in his oxygen saturations.  Tonight is night #4 here, but Jake seems to have turned a corner with this bug, he's been off the oxygen for most of the day and  is holding steading at 79-80  percent saturations for the most part.  If he can stay off the oxygen over night, we will be discharged in the morning.  And I want to go home! The staff here have been wonderful, especially our day nurse Sarah - she was a God send for Jake and for us.  Jake likes her so much that he blows kisses and waves when she leaves his room.  As long as she is not holding the nose suction thingie, he is happy to see her!

Here's Jake on Day 1 of his treatment...He was feeling  really sick at this point.



It's tough having an IV in your foot when you are a toddler who just learned how to walk!



After day 2, Jake started to feel and act more like himself...even getting into mischief by squeezing his IV bag, and twisting the oxygen dial on the wall through the bars of his crib!



It's funny the things you miss when you can't go home.  Every day we've spent in this isolation room I have longed to be able to mop the floor - seriously.  It's near the top of my list of things to do when I get home tomorrow :)  Also on that list is to cook a yummy homemade meal, kiss my Doggie on the nose, have a bubble bath and shave my legs,  and spend all my free time on the floor with Jake.  Big Sister spent this week in Twillingate with her grandparents, and she is having a great time.  I'm thankful that she was happy and well cared for while we were here with Jake - if she had been at home she would have felt left out with us spending all this time at the hospital.  Georgia is getting a huge squeeze when she gets home on Tuesday.  I just want my little family in my cozy house all healthy and together - is that too much to ask? :)

This morning Jake had perked up enough to start acting like himself again, and I got this gem of a video of him bopping to Bobs and Lolo on the tv in his hospital room.  This will definitely make you smile...Take the time to click on this one!

https://www.facebook.com/photo.php?v=10154485308020611&l=545343752418445390

This is Jake's second hospital admission for a respiratory infection this year.  The last one was in March and lasted 2 nights.  This one has been double the time so far.  And his echo was once again postponed.  We are now nearing the 2 month mark with no echo - the longest Jake has gone without an echo in his entire life.  The general rule for sedated echos after a respiratory infection is minimum 17 days, so we're waiting for a new appointment now.  When this echo finally happens I will be one happy and relieved Momma.

Jacob is developing a true fear of some things that he sees frequently, such as strangers in gowns/face mask, and he can detect a bloodwork technician as soon as they walk into the room.  He just knows.  And he cries, and looks to me for protection from the hurt, and my heart breaks into pieces all over again.  It's so hard.  I worry at those moments what Jake's future will look like, and I have read stories of children with complex illnesses who have developed post traumautic stress disorder in reaction to their time spent receiving treatment, and then I have a new worry.  It's a vicious cycle.

Today is Sunday, and I wanted to be able to go to church - but since I couldn't my Mom brought church to me through her cell phone :) Jake was napping when the service started, so I got to listen to part of the service through the speakerphone during those peaceful moments.  Thanks Mom.  I didn't feel alone at all during that time!

Jon and I are mentally preparing to head back to SickKids once again.  We're still waiting for the date, but we know it will likely be in the next month or so.  With that in mind, my family is taking part in the Ronald Mcdonald House's Red Shoe Crew - Walk for Families in September.  We are raising money for the local RMH in St. John's, even though we have never stayed there - we feel a connection because of the 3 months we lived at RMH Toronto in 2013.  With another stay at RMH approaching, we've set a fundraising goal of $500, and we're half way there! If you would like to make a donation to Team Jake - we have set up a Canada Helps page that sends the donation directly to RMH St. John's.  Here's the link to our fundraising page - every donation helps, and donations of over $10 get a tax reciept.  https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=38565

Please consider making a donation to help us reach our goal!

God is faithful, and He's good.  He's been Jake's strong foundation and protector since the moment of his conception, and this experience has been no different.  My Mom reminded me today of the song that I spent hours and hours singing to Jake during his two stays at SickKids - on days when I didn't know if he would make it through, at at moments when I feared for his life.  It has been months since I thought about this song, and I was thankful for the reminder.


Lord send your angels to watch over Jacob,
I'm so afraid of the night.
Lord send your angels to watch over Jacob,
wrap him in your loving arms.

That's my prayer for the night.  For angels to watch over my children, both Jake and Georgia.  For my fear of the unknown to be at rest.  For Jacob and Georgia to know that God loves them.  For Jake to have strength enough to keep his oxygen level steady overnight, so we can all go home tomorrow.  Lord, send your angels.

Tuesday, August 12, 2014

Answers to prayer...

Today has been an amazing day.  Today has been an answer to prayer, in multiple ways.  Today we tried something different, and while we weren't completely successful, it was far from a failure.  Today we did this...


Guess what's missing from this picture?

That old stinkin' NG, that's what!

Because his last two scheduled echos have been cancelled, and the prime suspect for his congestion/cough has become his NG tube possibly blocking his sinuses, and because Jake rubs at the tube a lot trying to get it out of his nose, and because Jake has developed his eating and drinking skills further in the last month we wanted to give it a trial run with no NG and see what would happen...

Here's what's happened:

He has eaten:  half a slice of french toast, 2 slices of watermelon, 2 mini banana muffins, 12 goldfish crackers, 2 tablespoons of yogurt, a 4 ounce fruit pouch, 1/4 cup of fried rice, and 6 crackers.

He has drank orally: 76 ML TOTAL so far today.  Our goal was 60 ml, and by suppertime he was actively asking for his liquids.  On his tray at supper he had 3 sippy cups - water, chocolate milk and chocolate pediasure.  To put in in the perspective of the big picture, Jake takes 900 ml daily through 4 NG feeds so there is a long way to go yet.  However, I don't think this achievement should be minimized - he drank, all by himself, 2.5 ounces today.  So proud of him, and so thankful to God and our prayer team for helping this happen.  THANK YOU for the prayers and good thoughts.  You rock.

The downside: He has had no wet diapers and no bowel movements, so we know he is headed towards dehydration now.

The NG will be put back in right before he goes to bed, and we'll do a full feed slowly while he sleeps so he can start to regain normal hydration again.

But we got an answer to prayer - he drank more than 1 ounce on his own in one day.  He can do it.  You go superbaby!

I couldn't have done this for the first time without the emotional and moral and "jumping up and down and keeping the baby happy" support of my Mom.  Love you Mom.  Let's do it again next month? :)

Jake is not ready to be feeding tube free yet, but today has proven to me that he can eat and drink more than we think he can.  I believe his refusal to drink is behavioural.  It's a learned behaviour resulting from having his tummy magically fill with milk at set intervals during the day, thanks to the hated NG tube.  But I'm feeling resolved now, and armed with the knowledge that he can drink more - Jake and I are in this together, and we're going to start increasing those oral feeds more and more.  We are.  Yes!

Look at the excellent drinking form he has here, something for Jake's I Run 4 buddy Laura to be excited over!




This morning, around 10 am I received two more answers to prayer.  I can hardly contain my excitement about both of them, but they each come with their own anxiety as well.  First and foremost...I am so unbelieveably happy and excited to say that this morning Jake was given his last Enox needle (for the forseeable future at least!).  His last needle.  Done.  Finished.  See...


The chalkboard on his bedroom wall where we record his Enox dosages looks like this...and we don't have to check off PM today, or any other day for that matter. When I heard this my first thought was no...we can't do that...it's not safe.   But SickKids has now determined that the risk of him getting a bleed from being on a blood thinner is much higher than the risk of his left pulmonary artery forming a blood clot.  They are both risks, but in a complex child like Jake the risks are weighed and the less risky road is followed.  The path for Jake has now shifted, and he is going to transition to a low dose aspirin later in the week.  Oh my Lord, I am so thankful for this answer to prayer.  No more gritting my teeth and listening to my baby cry while tears stream over his beautiful cheeks because we have poked his arm or leg with a mean needle.  It's done.  I am so thankful.  Check out the bruises he is currently sporting on one arm from this torture...


Now these are going to heal.  Thank you Lord for that.  But at the same time, please protect Jake from blood clots - help us to see the signs early if one begins to occur.

And then, another answer to prayer...this has been a blessed day.

The cardiac surgeon at SickKids has agreed to move Jake's pacemaker, and put in a G Tube.  We're soon going to be losing the NG for good.  The g tube will provide a less torturous way for us to keep Jake nourished until he figures out this drinking thing.  It's major abdominal surgery, anaesthetic and comes with it's own set of risks and possible complications, but given the new complications we are having with the NG it seems like the best and safest route for Jake in the meantime.  So now we await our appointment, but we will be likely travelling to Toronto for this procedure sometime in September.  I'm happy and excited about this too, but also concerned about the surgery and the recovery period, and more upheaval for Georgia.  Please keep big sister Georgia in your prayers in these coming days, as she will be adjusting to kindergarten and then likely having us leave for an unknown period of time in the same month.

So wow.  What a day.  I can hardly wrap my head around it all.  But I'm proud of Jake's accomplishments and I'm thankful to God for His goodness and grace.  Like the Psalmist said in chapter 107, "give thanks to the Lord for He is good, His steadfast love endures forever."

I'm going now in search of a calm cup of tea and a moment to process the day...I'll leave you with my boy and his beloved blankie...




Tuesday, August 5, 2014

#lauraruns4me

Yesterday Jake turned 16 months old...that's a cause for celebration right there in itself!

We have been trying really hard to include Georgia in most things to help avoid the sibling jealousy that pops up now and then, so, Georgia is  68 months old - partay! :)

We had a wonderful week out of town with visits to two places that are near and dear to Jon and my hearts - Seal Cove Fortune Bay for me, and Twillingate for Jon.  And all my worries and anxiety over taking Jake away from the Janeway were all for nothing of course - nothing bad happened at all.  In fact, Jake's oxygen saturations were higher than normal for the whole week, showing up in the low 90s most days! Georgia loves being outside, so she had a ball on this trip - it's so simple to keep her happy when all you have to do is walk out the door and your next to the ocean.  Oh, and having 2 sets of grandparents who will do anything to keep Georgia and Jake happy also makes it easy to relax while away from home.  I also took a break from recording everything that Jake ate or drank, which was a nice bit of mental relaxation and a release from the "he's not eating/drinking enough" pressures of each day.  Here are a few of my favourite pictures from the week:


Starting with a sweet moment that melted my heart when we were out in the boat fishing for cod in Twillingate...Georgia said "Momma, it looks like God is peeking at me" and pointed to the clouds.  Oh my, I was instant mush.  What a good girl, I am so thankful for her.










Oh the blessings.  While on holidays I read an article written by another heart Mom that spoke volumes to my mental state since having Jake.  The article is here:

http://accidentalpurpose.com/the-only-question-that-matters/

And in it the Mom talks about her greatest fear, namely losing her child to his CHD battle.  The one question that any doctor or surgeon can never answer for us is "What can I do so that I don't lose him?" and then she talks about "the ache".  I know this ache - it's always there, even in the most delightful and carefree moments.  The writer says,


"The ache in our hearts for what we fear the most never goes away. No 

matter how well our children are doing.


No matter how they sail through surgeries.

No matter how normal our lives become.

The ache in our hearts for what we fear never. goes. away."



I always feel relief when I hear another parent describe my own feelings, it's a needed reminder that I am not alone on this journey.  And then I push the ache to the back of my mind, and move on.  So...movin' on....

When we got back from holidays I heard about this program called "I Run 4" through another Heart Mom.

http://www.whoirun4.com/

  This program connects runners and athletes with children who have serious health issues, and when I checked the website it said they were in need of Buddy's for runner's who are on a wait list to get a Buddy.  So, I signed Jake up! And that very same day we were connected to a runner named Laura M.  I shared some of Jake's history with her, and we have started a daily conversation and are getting to know each other better.  I literally cried when I read that Laura already has a medal to send to Jake from a race she completed in April.  Amazing.  Even more amazing, Laura has found a race called the Diva Dash that can be run for Georgia so that she doesn't get left out.  And get this, when the date of the Diva Dash didn't work out with her vacation schedule, she found a friend to run it for her on Georgia's behalf.  Georgia will be beside herself when she gets that feather boa in the mail :)  So, if we are Facebook or Twitter friends, you will see a lot of the hashtag #lauraruns4me in my posts and pics...This will be one way Jake can encourage Laura on her runs and other endeavors, and Laura will be spreading CHD awareness for Jake through her own posts and runs.  It's a win-win situation for sure, and I'm really excited about it! If you are reading this Laura, we got your back!

In heart related news, it's echo week for Jake so say a prayer for him and for the words "no change" to come from our cardiologist on Friday morning.  Our buddy baby Owen has been born - He's gone through 2 surgeries in less than 2 weeks of life, so please remember him in your prayers as well.  It's a rough, roller coaster ride to recovery and being able to go home with his family for the first time.

We had a victory in the liquid feeding department yesterday - Jake drank 30 ml exactly from his straw sippy cup.  AN OUNCE! Every morning when I fill his cup with liquid, I think to myself, if only he could drink an ounce today.  And finally, after months of waiting...it happened.  Today so far he has drank 9 ml, we are aiming for another 21 to make the ounce marker once again.  I'm so excited by it, but I also know that it happening once does not guarantee it becoming a regular occurrence, but I can hope and dream can't I?