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...

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!