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...

Just getting through the day...

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 syringes, 

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...

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.

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.

Laparascopic Technique

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.

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.

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)

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.

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!

February is Heart Month

Jake'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.  

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.

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!

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...

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.

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.  

Every 15 minutes a child is born with CHD.  That's 1 in 100 babies.

And finally...

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. 

Hi Friends!

I have entered Jake in the Mended Little Hearts #rockyourscar contest, so if you can please vote for him at Rock Your Scar Contest.  Yay, go Superbaby!

The 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 - supposed to - 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.  :(

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.

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!

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.

   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.

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!

January Prayer Request

2015 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 :)

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.  

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.

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.

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.


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.

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?


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.

Check this out...Jake likes to fall asleep in my arms like this...

And this is the appreciation we got on Christmas morning from Super Baby...

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.

2015

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!