We will see you again.

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.

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.





AVA

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.




GIDEON

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 The Mighty Warrior Blood Drive on Facebook to show your support!




GABRIEL

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.  



Matthew 18:1-4.

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.



Rest in peace little ones, inside the fold of God's loving arms.  

Ava, Gideon, Gabriel, Baby Anstey and Mark.  We will see you again.

Celebrating Big Sis

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.

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.



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.

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.

Psalm 27:14King James Version (KJV)

14 Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.

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.

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.

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.  

One huge development in the recent weeks...Jake now brushes his teeth.  Any parent of a child who is tube fed will understand -- Jake has never let me brush his teeth, or been willing to brush them himself, and because of the possiblity of developing an oral aversion we were advised not too push him.  But with coaxing, and encouragement from Big Sis, he now does it himself with a touch up from me afterwards.  I'm so proud.

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.

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.

When 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.

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.

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.

As you can see...Jake is happy to be home :)

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.

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.

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.

Psalm 18:2New International Version (NIV)

2 The Lord is my rock, my fortress and my deliverer;
    my God is my rock, in whom I take refuge,
    my shield[a] and the horn[b] of my salvation, my stronghold.

The Lord is Jacob's Rock, Jacob's Fortress and Jacob's Deliverer;

my God is Jacob's rock, in whom Jacob takes refuge,

Jacob's shield, and the horn of his salvation, his stronghold.

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.  

To make a donation to the Janeway, click here.  

Check out this year's theme song...Bounce Back...and be warned...I cried...

Oh 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...

 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...

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.  

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!  

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.

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.

Note, that is the Nutriport in the picture above - Jake's current Mic - G feeding tube does not look like that!

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....

Normality 2.0

In 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.

 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.

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...

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.  

  

We can't get enough of our wonderful life together.

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.

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. 

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.

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.  

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.  

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.  

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.

Normal.

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 - "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."

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.

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.  

Have a look...

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.

  



Jake's first time in the snow...we went to Bowring Park!

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!

Playing outside and his first knee scrape :)

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.

That is not to say that life is perfect, life is never perfect.  But I'm so filled with thankfulness 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 dietitian 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 Easter 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.

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.

G 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.

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.

 



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...

   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.

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.

When doing a feed, this is what it looks like hooded up to his pump...

 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...