And it's still raining...

Last night we got the results from Jake's sedated echo - everything looks good but the left pulmonary artery (LPA) is still narrow and will be a cause for concern in the future.  We went to bed feeling hopefully optimistic about being discharged soon.  This morning at rounds the doctor reiterated what we had heard the night before, and speculated that Jake might need intervention for his LPA before his next open heart procedure, the Fontan.  Then we were told that we were on course for discharge tomorrow.  So excited! Over the moon happy to be taking our boy back to Ronald Mcdonald House to wait for his checkup next week at the cardiac clinic.  I was in Jake's room laughing with Mom while Jon and Georgia walked around the hospital and then Jon came into the room and said he had just been talking to Jake's SickKids cardiologist.  Right away I knew...something was wrong.

The cardiologist had taken another look at Jake's echo pictures and decided that the LPA was too narrow for us to go home without intervention.  To verify this, he wanted Jake to have a MRI - but because of Jake's pacemaker we had to settle for a CT scan.  Jake was given morphine and taken down right away for the scan.  Because of his very small veins Jacob needs a special team to get his IVs in, and this team was unavailable when Jake was down in the CT department, the regular team tried and could not get an IV in so Jake's CT was cancelled for today.  Now we are waiting for the morning for the IV and CT scan, and then finally some answers and a plan of action.  Unfortunately this means that our discharge for tomorrow is on hold, most likely until at least Monday.  It also likely means that Jake's break from daily injections will be short lived - if a stent is put in place in his LPA than he will need the anti-coagulant drug again.  My heart bleeds for the daily pain Jake has experienced with that, and that he may now have to experience again.

The title of my last post was "cautiously optimistic"...well this morning we went from cautiously optimistic to completely optimistic to devastated all in the span of a few hours.  Now I'm feeling like I've been run over by a truck - completely emotionally and physically drained by the day.  My planned post for tonight was a positive one with the highlights of the past two days - Georgia and my Mom arriving, Jake's good report and Jake eating (and enjoying!) cereal for the first time - and instead I find myself struggling to praise God despite the storm.  I need to praise God because for the first time in his entire life my baby boy has pink cheeks - pink! Jake's normal colour since birth has been a pale blueish-grey.  When I first noticed the colour in his cheeks I thought something was wrong...he's flushed, he must be warm, have a temperature, etc.  Then Paula, the nurse practitioner explained the obvious - it's because of Jake's new increased blood flow! Jake's heart is doing half of the work that it had to before his last open heart surgery, and he looks and feels healthier because of it.  I am so thankful for that.  But still...We had come through the storm, and looked up expecting to see a clear blue sky and instead find that the storm is still raging all around us.

I know you are tired of hearing me ask...and indeed, I am tired of having to ask...but please...continue to pray for Jake in the days ahead.

Cautiously Optimistic

Guess who arrives in Toronto tomorrow? My big girl with her sweet smile and my wonderful Mom.  I cannot wait for them to walk through the door to Jake's hospital room.  Since we're in parent care we are allowed visitors and siblings can stay during the day, so I'm sure my boy will be smiling tomorrow when he sees his sister's face!  There is a possibility, dependent on many factors, that Jake will be discharged tomorrow and released to Ronald McDonald House for a week.  After that week he will have a final checkup and if given the all clear we can book our flights home.  I'm very cautiously optimistic because I know how quickly things can change and how many disappointments we had over the first surgery hospital stay.  Before we can go, Jake needs to keep maintaining his oxygen levels (which have been in the high 70s and low 80s with no oxygen assistance!), get a good report from the pacemaker team, have a good Echo, and possibly a chest x-ray.  So...we'll see.  If we are released tomorrow Jake will have been discharged 6 days post-open heart surgery.  How's that for a superbaby!

I've been doing a lot of thinking about the future.  Jake's future in particular.  Our time in Toronto and connections we have made with other Heart families have shown me how fragile life can really be.  In our short time on this journey with Jacob we have made connections with several families who have since lost their Heart warrior.  This week a family we met at RMH is saying goodbye to 9 year old Jordan, who was also a single ventricle patient, and I cannot even begin to fathom what they are experiencing.  Jacob always seemed to have a smile for Jordan, the few times that their paths crossed, and it's hard to wrap my mind around the fact that last week we sat at the table with him but a few days later he was gone.  My heart goes out to his family, and his to little sister who Georgia loved to play with during her last visit to RMH.  I had a great conversation with another Heart mom about this today, and wish I could reach a place of peace for this aspect of our family life.

Today I captured a picture of Jake's smile...these are few and far between right now, so it's precious to behold :)  You can see from the picture that he still slightly swollen from fluid retention, and he has the line in his neck but that line will be coming out tonight - Good Lord willing.

For right now, I am doing my best to be content.  I have so much to be thankful for.  And looking at the picture above warms my heart.  Once Georgia arrives, all will be right in our world again.  God bless both of my babies.

Superbaby SMILED!

Here we are 3 days post-Glenn operation, and it's been such a whirlwind that there has been no time to update.  In a nutshell, Jake's surgery lasted about 6.5 hours and had no complications.  No complications from the medical end, but Jake went 3 entire days without even a hint of smile.  It was pure sadness on his face and in his eyes until my heart felt like it was broken watching him.  Jake was in Cardiac Critical Care (CCU) by early evening on Thursday.  Thursday night went well, he was sleeping soundly and again had no complications.  On Friday Jake was doing well enough to cause the doctors to talk about transferring him out of critical care.  Because his oxygen saturations were still low, it was decided that he should stay in CCU for the night.  On Saturday Jake's oxygen saturations were still dipping low, but he was on a minimal flow of oxygen and otherwise doing so well that he was discharged from critical care and brought to the 4D ward.  We came upstairs anticipating a day or two in the stepdown unit, which is the norm when leaving CCU, and instead Jake was admitted directly into a private/parent care room! This was a really  nice and uplifting surprise.  A few hours after admission Jake's pain had really gotten much worse, and he was very upset, crying and so sad.  This was due to three things: his morphine dose had been cut in half (to help raise his oxygen saturations, and make it easier for him to take big breaths), the fluid on his lungs was making him cough which pulled at his chest incision, and the two drainage tubes were causing the most discomfort.  The first 24 hours on 4D were very rough for all three of us.  Jon and I were heartbroken over how sad and in pain our baby was - and were completely helpless to make it better.  Jake didn't even want to be held at this point.  By Sunday morning Jake was puffy and swollen all over his face, and needed to be restarted on his diuretic.  An x-ray of his lungs showed that they were "cloudy" and he needed to drain the fluid.  His drainage tubes were now having minimal drain so they were removed along with the external pacing wires this afternoon.  The extra morphine given to help with the removal of the tubes helped him get a couple hours of straight sleep finally.  After this nap Jake's nurse came in and we gave him a bath together, being careful to avoid getting his chest incisions wet...and we got a SMILE!  Shortly after the first epic smile, we got several more smiles and he even started kicking his legs a little, and chewing on his fingers as he would have before this ordeal began.  I think my baby boy may have turned a corner and be on the mend.  Superbaby is earning his nickname this past week!

Jake had some visitors today...starting with Daina, Gary and Isaiah who are here for Isaiah's heart cath and also staying at Ronald McDonald House.  That was followed by Krystyne and Keegan, who brought some homemade goodies including dairy free brownies! After that we had some time with Heather and Aliyah, who always puts a smile on our faces.  God is good...and He has provided friends for us even when we are so far from home.

I can't get past the smile that we finally saw on baby Jacob's face tonight.  It's like an enormous cloud has been lifted off my shoulders, and the tears that I have cried and the prayers that I have prayed have been heard and answered.  Thank you to everyone who has prayed for Jake.  There are so many of you, and most of you I don't even know.  I could feel the support through Jake's surgery and into his recovery, the same as if someone had placed a warm blanket over me.

Yesterday in my parent's hometown of Seal Cove, it was Rally Day at the Salvation Army church and the town said prayers for Jacob and released balloons for him.  There were pictures of the event posted to my Facebook wall, and it was such a nice thing to have happen on such a rough day!

Jake's oxygen saturations are still a big issue, but we are hoping that tomorrow might be the beginning of these numbers stabilizing now that his painful drainage tubes are gone.  I don't know what tonight and tomorrow bring, but I am feeling renewed going into the future thanks to more answered prayer and the most beautiful smile in the world.

Tomorrow is surgery day....

As a quick update to my last post, I wanted to share that the news from the team at SickKids was good news! Jacob does not need his Aortic Archway reconstructed.  The narrowing is minimal, and there is no blockage.  Thank God for that!

The Pacemaker team has decided to give Jacob the larger pacemaker during tomorrow's procedure - this pacer has a larger battery, so will have a longer battery life.  New pacing wires will also be attached to his heart so that both ventricles will be paced from now on.

We are getting ready to do some prep for the surgery now.  The last dose of his Enox injection has been given, and we are setting our alarms for the latest time of night that Jake can have any fluids.  Next on the list is to pack a bag for Jake, and to give him the bath with the surgical scrub brush and Chlorhexidine solution for disinfection.  Scrubbing his little chest, and the many scars that already exist, will be especially hard on my heart tonight.

Please pray, friends.

God bless baby Jacob.

Pre-Op Day

Monday was Pre-Op day for Jacob at the Cardiac Clinic in SickKids.  Thankfully most of the preop requirements had been completed last week - Echo, EKG, bloodwork, and Cath so they had most of the information they needed - but it turned out that an unexpected complication had come up with Jacob's Aortic archway.  This archway appears to be either narrowed or blocked, but different tests are showing conflicting results because the Echo shows it as narrow/blocked but the Cath shows it to be fine.  Because of this Jacob was sent for a CT scan yesterday afternoon - a thoroughly torturous experience because it took two teams to get an IV into him for the dye, and Jacob was so upset that he was purple and soaked through with sweat by the end of it.  When the IV was finally in place Jake was exhausted and fell into a sound enough sleep to sleep through the whole scan, in spite of the very loud machine noises and flashing blue/green lights! It was like a space ship taking off in the room, and Jake slept right through it...He didn't even notice that his arms were strapped up, and he was being moved around inside this huge machine.  We will know tomorrow (Wednesday) what the team has decided for Jacob based on this CT scan.

The artery that we have been worrying over, and praying over for awhile now is indeed narrow, and needs to be patched.  The Surgeon, Dr. C. didn't seem to feel this was a big deal - he showed more concern over the possible arch complication.  Then, the icing on the cake was that the team felt that Jacob's pacemaker should be replaced now during the Glenn procedure, and the single pacing wire on his heart should be replaced with two pacing wires so that both ventricles are being paced.  The reasons for this suggestion are based on battery life of the device, and on the changes that the upcoming procedure will make in Jacob's heart.  To make this decision, Jake was fitted with a holter monitor that will take readings of his pacemaker use for a 24 hour period.  It's a medium sized box hanging outside of his clothes, and his chest is literally COVERED in wires, stickers and tape.  Here he is being set up by the pacemaker lady, and not minding it at all.  This boy amazes me at every turn.

 So, Jon and I felt like...our fears were confirmed with the left pulmonary artery needing patching, and then it was double whammy of unexpected news between the Aortic Archway and the Pacemaker.  Tomorrow morning the whole team meets to discuss Jacob's case, and the big decisions will be made and then communicated to us.  Because they are reopening Jake's chest in the same spot the team will have to deal with scar tissue, and from the description we were given this can be a very complex and sometimes dangerous task as the scar tissue from the heart can attach itself to the sternum where the opening is made.  I shiver at the thought of it...Jake is so small! One of the hardest parts of Monday was signing the consent form that listed all possible complications - from death, stroke, kidney/liver disfunction, brain damage, bleeding and so on.  The likelihood of death is very small compared to his last Norwood procedure - it's 2% instead of 20% this time.  But these other possible complications have higher risk, and my mind feels like it will implode when I go there.  So, I'm not going there.  My God is bigger than these risks, and I believe with every fiber of my being that he is holding Jacob's life in the palm of his hand.

Georgia is doing well with my parents, and looking happy in all the pictures we see of her.  She had a breakdown over the phone the last time we talked, and that was incredibly hard on the heart but the plan is for her and Mom to come to visit us after Jake's surgery.  The surgery is schedule for Thursday morning, we have to be at SickKids by 6 AM with Jake on that day, and the surgery will likely be a long one - not because of one big complicated procedure but because of several "small" things being done at the one time.  It's 98% likely that Jake will come out of the OR with his chest already closed and will be extubated very soon after arriving in critical care.  I'm praying that all goes smoothly for my treasured boy, and that we will be home with him in no time at all.

In a really cool turn of events, one of my Heart Mom friends - Daina - is going to be at SickKids with Isaiah for a Heart Cath next week.  Georgia will likely be here at the same time, and that's really cool because she loves Isaiah.  It's so heartwarming every time I lay eyes on that boy - he's so big and strong, and no one would ever know that he has half a heart and has come through so many struggles to get to where he is today.

Over the weekend we had visits from Heather and Aliyah, and a outing to Danish Dreams for dairy free frozen yogurt with Krystyne and Darcie.  Tonight I'm meeting up with my friend from high school/university, Kate.  I'm trying to make the most of these spare moments before the surgery, because there will be no free moments once that surgery takes place.  Oh, and I got to eat NACHOS! Made with dairy and soy free cheese - it does exist!

When I stop to think about the upcoming procedure, I'm so scared, but I'm using all my strength to not dwell on that and to enjoy these days of cuddles and time with my amazing superbaby before this next trial begins.  Please keep Jake in your prayers, especially on Thursday and the days following the procedure.

Post-Cath Update

Jacob's cardiac cath went well, with no complications.  He spent six hours in the recovery ward, and then was discharged to go back to Ronald Mcdonald House with us.  This was a lovely bonus as we had been told to expect him to have an overnight stay.  His oxygen saturations were low for awhile, as low as in the 50s and 60s at some points, but then stabilized at high 70s before his release.  We have five days of wound care to do for his groin area, but other than that he is his happy go lucky self.  I'm thanking God for another safe procedure.  We are still waiting on some answers about his heart, but these won't be given until Monday when the surgical and single ventricle teams meet to discuss.  The final pre-op requirements will be completed Monday morning, and Jake's surgery will be either Tuesday or Friday of next week.  This will be determined at the Monday appointment as well.

Here are Jake and I about half an hour before his Cath...I wish I could give you my whole heart baby boy.  I'd do anything to fix yours!

Cath Day

It"s as though we never left TO in some ways...we have settled back into the familiar routines and ways that we established during our last trip here.  The flight was mostly uneventful, although Jacob used 3 tanks of oxygen and had a significant dip in his saturations during the last half.  He was sleeping in my arms and then his oxygen dipped to 53 and he woke up very upset, seemed frightened and working hard to catch his breath.  Given that we were in the air somewhere above Quebec, this was terrifying.  The episode lasted about half an hour and then his saturations slowly began to climb.  When we landed they had settled back into the low 80s, thankfully.

We are so thankful for Ronald McDonald House...Jake is doing well there and he especially loves the huge fish tank.  He seems more interested in the bubbles at the top than in the fish :)  Yesterday was a long day of pre catheterization assessments: x-ray, bloodwork and echo.  The bloodwork was so rough on his hands that both of his palms and part of the top of his hands are bruised.  It's such a sin.  My little trooper handled the majority of it with a smile and even a laugh at times.  I am continually amazed by Jacob's pleasantness, irregardless of what life throws at him.  This is a big lesson that my boy is trying to teach me!

Right now at this moment Jake is sedated, intubated and in the cath lab.  He"s about 1.5 hours into the procedure, and we are waiting in his room on 4D for the doctor to come find us.  This is a routine procedure but the list of possible complications is long and some are very serious.  I found myself singing the same song to him that I sang in my head during his delivery and countless times over his bed during his recovery from the Norwood...

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 sheltering arms

I know that is  not  how the chorus really goes, but it's been my theme song since the day Jake was born.  We should have some news about his heart and readiness for the Glenn surgery today.  Please continue your prayers for my sweet, happy heart warrior.  I believe that God is in control of Jacob's destiny! Jake has gone into every procedure with Georgia's picture on his bed...today was no exception.  Before his cath I had to disinfect him with this special sponge and dress him in scrubs.  That was a first for me, and so bittersweet as I helped to prepare him for the procedure.  He was asleep in my arms when the nurse came to take him - letting go is getting harder every single time.

God bless baby Jacob.

Deuteronomy 31:8

Our flight to Toronto leaves early tomorrow morning...I am in the middle of finalizing the packing, and trying to make sure that nothing important is left behind.  I realize that I'm going to be in downtown Toronto, and there are stores left right and center that can supply most needs so I'm trying not to go overboard with what goes into the suitcases.  Jacob comes with a suitcase full of medical supplies, and we also need a carry on medical supply case to cover the possibility that the full sized suitcase gets lost or misplaced by the airline.  I just placed an emergency NG (feeding tube) replacement kit into my carry on - I can honestly say that packing has never been this complicated.  I consider myself to be a fairly organized person, but I'm finding organizing this trip to be extremely challenging.

Yesterday we got a phone call that provided an answer to prayer.  God is answering our prayers before we even leave our home province! There is a room available for us at Ronald Mcdonald House as soon as we arrive in Toronto.  That gives us a safe, clean and affordable place to live with Jake while waiting for the surgery and just as importantly,  after he has been admitted we will be only minutes away from Sick Kids and in an environment where everyone around you understands why you need to cry or why you need someone to talk to.

I'm feeling anxious about leaving my little girl, my family,  my dog and my home.  God has already prepared the way for us, I truly believe that to be true.

Deuteronomy 31:8

New International Version (NIV)

8 The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Georgia will be in the best of hands with my Mom and Dad - she even has her very own pink bedroom there! Lukey and my house will be in great hands with my good friend Krista, but Lukey's health has not been great lately so I worry about leaving him.  My family has each other, and constant calls/texts from me and Jon to keep them informed.  I'm going to miss everyone so much.  But I'm praying that this trip is less than a month long.  3 weeks is not an unreasonable expectation if all goes well.  I know that the prayer support for Jacob and our family has never ended - and I have been feeling a renewal lately...Thank you everyone for your prayers and kinds words - I will do my best to keep you all posted through this site while we are in TO.

Jacob is doing well - his oxygen saturations regularly drop into the high 60s/low 70s but also spend time in the high 70s and low 80s.  Tomorrow on the plane he will be hooked up to his oxygen monitor and have a oxygen mask blowing air on his face for the whole flight.  It's possible his oxygen could drop as low as the 50s without the assistance of this oxygen, and that is just too low.  Jacob's sweet cardiologist joked that Momma might need to use the oxygen too when she see's how low the numbers go on the oxygen monitor! We're going to try to time Jake's feed so that he doesn't need one while on the plane - he vomits enough without being fed in a moving vehicle.  Jon and I also have extra shirts packed in our carry on because sometimes the vomit is inevitable.

Yesterday I saw a picture on Facebook that had the caption: My son has HRHS (Hypoplastic Right Heart Syndrome).  His half of a heart makes mine whole.

Jacob's half of a heart makes our family whole.  God bless baby Jacob.

   My two beautiful children - Georgia and Jake.

Jake the Smurf :)

This time next week our family will be putting the final things into our suitcases for our trip to Toronto.  We'll be moving our sweet beautiful girl over to her Nanna and Poppa's house for the forseeable future.  I haven't been able to bring myself to tell Georgia about our leaving yet.  Our last trip feels like it was only yesterday, and I know how hard that was for Georgia.  Georgia and Jake seem to have formed a deep attachment with each other.  Jake smiles the brightest for Georgia, and she loves it when he smiles for her.  Each sound or gesture Jake makes brings Georgia such delight - it's beautiful to watch! And despite all of the extra time that is needed for Jake's care and doctor's appointments, Georgia has not shown any sign of jealousy.  She is one amazing little girl, and I will be missing her like crazy when we leave.

On the brighter side, this trip should not be nearly as long as the first.  Georgia will start preschool, ballet and singing company while we are away, so her life will be full of fun and activity.  And my parent's lives will be extremely full of busyness, chaos and sweetness as Georgia fills up their house with pink dresses, loud squeals and her enormous heart.  I have very real hope that Jacob will come throught this surgery with flying colours, and there will be no additional intervention needed for his pulmonary artery.  We could be home 3 weeks from his surgery if all goes well.  One big difference this time is that Jacob will have his chest closed before he comes out of the operating room. The last surgery his chest was open for 7 days before the real healing could begin.  Jacob is doing well overall.  His oxygen stats are lowering slowly, they seem to be mostly low 70s, occasionally 60s for now, and considering that 100 is the normal oxygen level this is more proof that he needs his bidirectional glenn surgery soon.  My baby boy has blue lips most of the time, and when he is upset he goes from pale to purple in no time at all.  He's my little smurf :)   I weighed him on our home scale today, and he weighed in at 14 lbs 6 oz!!!  My goal all along has been to get him to 15 lbs by the time of his surgery - and I think we might make it.  Go Jakey go - you are an incredible heart warrior and I love you more than life itself.

On Friday afternoon after a long day of appointments for both Jake and myself, I had finally changed into my comfort clothes and started to tackle the untidyness of our house when my doorbell rang.  I opened the door in my pj's with unwashed hair to find someone that we barely know who wanted to wish us well on our upcoming trip, and to give a donation to help cover our costs.  The kindness that surrounds our family is unbelievable.  Thank you.  You know who you are :) It is so needed, and so appreciated.

I realized that I hadn't mentioned Jake's feeding for a couple of posts, and this is because there really is nothing to report.  He's still not bottle feeding or nursing, all feeds are 100% through his feeding tube.  We discovered while Jake was in the bathtub one night, that he likes the "taste" of water.  So, we are now cup feeding Jake water 3-4 times a day so that he doesn't forget how to swallow.  Most of the time he has no problem with it, which gives me some hope for when we introduce solids after this surgery.  My poor boy is also teething...He is normally so happy but now he will have crying spells where he cannot rub his gums enough or get a teether into his mouth fast enough.  Oddly, his favourite thing to chew on seems to be blankets :)

In my life, coffee has become a very dear friend.  Tea has taken the back burner for now, or is my substitute when there is no almond milk around for my coffee.  I was very surprised that Starbucks doesn't carry almond or rice milk, but they told me that if I bring in my own almond  milk they can make any drink with it.  Now I normally have a juice box of almond milk in my diaper bag or purse :) Ah, the life of a diary free Mom.

Heading out to church with my family this morning.  This will likely be my last chance for at  least a month so I plan to enjoy it.  It's a Cast Your Burdens on Jesus kind of day in my world.

1 Peter 5:7

New Living Translation (NLT)

7 Give all your worries and cares to God, for he cares about you.