My big girl

Jake's big sister Georgia is one amazing little girl.  Georgia's life has been turned upside down repeatedly over the last 7 months, and we have been constantly amazed with how well she has handled it.  That's not to say there haven't been bumps in the road, but for a four year old I think Georgia has proved to be a real trooper.  Since we returned from SickKids this time, a lot of my worry and anxiety has been focused on Georgia.  There was a short period of time when Georgia vented her frustration by writing on anything and everything she could when she would find a pen/crayon/permanent marker around the house, but thankfully this phase seems to have ended.  The other obvious difference was that our independent girl became a little clingy, and needy - to the point where if Jon or I were not in the room with her she would sometimes cry and say that she thought we had left her.  But it's been about a week since the last time that happened, so I'm hoping that ship has sailed as well.  Today Jon and I booked Georgia's birthday party at the place she requested, despite it costing more than we would usually spend - we talked about it and decided that after the year she has had it won't hurt to treat her for her 5th birthday.  This is also the last year I have my sweetheart to myself, as she will start Kindergarten in 2014.  My smart, funny, beautiful little girl is growing up fast.  It's an enormous weight off my shoulders that Georgia does not blame or resent Jake at all for any of the changes in her life.  She loves her baby brother unconditionally, and his face lights up when she walks into the room.

Today Jake had his 4 month immunizations.  He's 7 months old now, but behind the immunization schedule because of his surgeries.  Jake really got upset with me and the nurse during his appointment today, it was unusual for him but the nurse said that one of the vaccines causes a stinging sensation so that was likely the culprit.  When Jake had his 2 month immunization (at 4 months old), he was on the 4th percentile for size.  Today Jake outdid himself and landed at the 37th percentile - I was so relieved by that.

Feeding boot camp officially starts for Jake on Friday.  This should be interesting.  Jake is now eating cereal and a veggie each day.  He loves carrots and sweet potatoes, next on my list to try is parsnip so hopefully I can make that by the weekend.  We saw our cardiologist on Tuesday, and now we have a 3 week period until our next visit for a sedated echo.  3 weeks! That will be the longest period in his life that Jake has gone without seeing Cardiology.  Woo hoo :)

I know that many prayer warriors read this blog, and today I want to ask for prayer for another heart baby named Sara.  I have mentioned Sara on the blog before and to make a long story short, Sara had to be rushed to SickKids for open heart surgery much earlier than expected because of complications.  Sara's surgery went well, but in Cardiac Critical Care she has taken a turn for the worse and desperately needs our prayers.  I spoke to Sara's mom Danielle today, and she sounds totally devastated but through her words you can also hear strength.  A heart Mom is a very special kind of mother.  Please pray that the Lord will hold Sara in the palm of his hand, keep her safe and heal her tiny body.  Pray also for strength and comfort for Danielle and Dave as they deal with the day to day reality of having a sick child.

Trick or Treat!

Happy Halloween from Jake and Georgia :)


Jake is posing as SickKids Cardiac Surgeon of course!

Georgia is Sully from Monsters U!

Our good friends Daina, Gary and Isaiah dropped in too.  Isaiah is another very special kid with half a heart!

It's a beautiful life.

Those who follow me on Facebook will have noticed a passionate post in the last week about people who like to touch my baby.  It seems like people are drawn to Jake - those who know his story, and strangers as well.  To say that it drives me nuts is putting it mildly.  I know everyone is well intentioned, and most likely do not realize the possible implications of touching a heart baby without washing their hands, but knowing the possible complications it makes me wild when someone reaches for Jake.  And now, he has his first cold.  Today was day 3 of the cold, and the worst one yet for him.  My poor baby sounds awful, but he's still managing to be his happy self 90% of the time.  Jake was examined by his cardiologist today, and she was really happy with how he was handling the cold - he wasn't in distress and his oxygen saturation was 88.  Also, he's now hit 16 pounds - way to go big guy! Jake also had a echo today, although he couldn't be sedated because of his cold and he spent a good part of the echo trying to show the technician how to do her job by pushing the probe around himself.  The echo shows that nothing has changed in terms of his left pulmonary artery, so all is well in our world today.  Jake had bloodwork done to check his enox levels, but I got a call this afternoon saying that the lab couldn't get a result from the bloodwork so it has to be redone on Monday.  Poor baby Jake.  He gets too many needle pokes.

In between appointments today I stopped in to visit the ladies at the Maternal Fetal Assessment Unit, they were such a huge part of this journey through Jake's diagnosis and my pregnancy.  It was such a familiar feeling to walk down that hallway like I did 3 times a week during the last part of my pregnancy.  Jake must have had a thousand pictures taken in the MFAU room while he was still in my tummy.  It was really nice to see their smiling faces, and to hear their positive comments about Jake's development.  

This afternoon I was driving home and rounded a corner and saw this...

The first thing I thought was how beautiful the rainbow was.  The second thing I thought of was the significance of a rainbow in the bible - it's the sign of God's promise.  Literally taken, it's the sign of God's promise never to flood the whole earth again.  To me today, it was a profound reminder of God's presence in my life - and of the precious gifts he has given me in the form of my two children.  I pulled the car over to the side of the road, took this picture and then drove the rest of the way home feeling light and full of hope for my family's future.  I don't know what tomorrow brings for Jake or Georgia, but no one else knows what tomorrow will bring either.  So for today, I'm trusting and believing.  God is good, and He has proven himself over and over in my life and my miracle boy's life.

Halloween is right around the corner and Jake has the perfect costume.  I can't reveal it yet though - check back on Halloween to see what my two little monsters are wearing :)

One highlight of our visit with the cardiologist today was being told that I could take Jake to a program at my Mom's church that I have been wanting to  join - Grow With Me.  Before Jake's Glenn surgery this would have been impossible because of exposure to germs and possible infections.  Now Jake is still living in a bubble, but the bubble can get a little bit larger because his heart is stronger.  Tooth number 2 is almost through, it's so close that I wouldn't be surprised if it was through by tomorrow morning, especially given the way his gums are bothering him tonight.  On the eating front, Jake is going to be starting in on meats this week.  We have worked our way through the types of cereal, and next on the menu is meat.  After that will be veggies and finally fruit.  It's so exciting, but also nerve wracking because I want so much for him to eat.  To eat enough to get that feeding tube out.  It's not an impossibility, but it will be an enormous challenge for Jake and for me.  Please focus prayer on Jake's oral feeding - I want to avoid the need for another surgery in the form of a G Tube for his stomach.  

 

I'll leave you with this beauty shot of my little pumpkin and his little pumpkin.  It's a beautiful life.

Boring Blessings.

I have sat down to write a new post three or four times since we got back home to Newfoundland, and each time the words just haven't come.  I've been mulling over why this could be, since I usually have an over abundance of words available :) My reflective thoughts have led me to the conclusion that my 'norm' has been so stressful and eventful for the last 10 months that now that life has calmed down, my mind feels that there is nothing to report.  In other words, life is boring right now.  Wonderful, thrillingly, exceedingly boring.  Jake's medication schedule is down to only 8 med times a day, we see cardiology every 2 weeks, OT every 2 weeks and dietician once a week - this is a very scaled down version of the crazy life that we led before Jake's Glenn.  We are now spending much more time at home than at the hospital - yay!

The highlight of this week has been the appearance of Jacob's first tooth, which you can see poking through in the picture below:

The other highlight was meeting baby Sara, another precious heart baby who needs your prayers as she prepares to go through the Glenn procedure herself.  Please keep Sara and her parents in your prayers.

I have a birthday coming up this weekend, and I feel like this past year has really aged me.  Grey hairs and undereye circles are physical evidence of this.  The more telling evidence for me though, is the way I feel inside.  I feel like my heart has taken a real beating.  It's been turned upside down and inside out repeatedly by Jake's life experiences.  And he's only 6 months old! A wise Mom I met at SickKids has told me several times when we talk about the uncertainty of our heart child's future - "expect the best and prepare for the worst".  That's a really great summary of my life.  I expect the absolute best possibly outcome for Jake, but throughout it all I am always mentally preparing  myself for the worst.  Does that make me a cup half empty type of person? I don't think so.  I think it makes me phenomenally great at seizing the day and squeezing every last drop of joy out of each moment...without being naive enough to think that our family's struggles are over.  But for right now my struggle is getting up when the alarm clock goes off at 2:30 am so that I can feed my baby.  When my body complains about having to do this every night for the last six months I remind myself that there are heart parents who have lost their little warrior and would so love the opportunity to have to do a night feed once again.  As I enjoy my final day of being 30 tomorrow, I'm drawing on this promise once again:

Isaiah 40:31
King James Version (KJV)

31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.

Perspective

In the time since my last post I've been doing some thinking.  Through the thoughts, experiences and conversations with those around me over the course of this trip, I've come to the conclusion that life is all about perspective.  My life is, anyways.  Life has not turned out the way that I wanted it, or had pictured it.  But looking at it with all the perspective that Jacob has given me in his short life I know that it is a better, harder, much  more fulfilled version of the life that I had anticipated.  I'm not going to spend the rest of my life feeling blue because my "plans" are unfulfilled - my life would be so empty without Jacob and Georgia in it! And they are both perfect in their own way.

When I was pregnant and Jacob developed Complete Heart Block in utero, our cardiologist held my hand and told me that Jake might not make it to the next checkup.  And he was born at full term, a bouncing 8 lbs 5 oz and with a loud cry.  Yes, he was blue and needed immediate intervention, but he was alive!  At 5 and 6 days old, Jacob had 2 open heart surgeries - the first of which had a 20% likelihood of death during the procedure.  Then after 56 days at SickKids we got to take Jacob home and spend a wonderful summer with him and our families.  Jacob has now had 3 open heart surgeries, 1 pacemaker implantation surgery, 1 heart cath and more tests/scans and bloodwork than I could keep track of.  Jacob is beautiful, strong and so HAPPY.  The way he views life is inspirational.

Today marks 2 weeks post-Glenn operation for Jacob.  Tomorrow he will be 6 months old.  2 days after that we will be home in Newfoundland.  Sunday is also my Father's birthday, so that's a nice birthday present right there huh, Dad?   There is so much to celebrate!

Jacob's Glenn operation was successful, and in the words of the surgeon "uneventful" and we are so thankful for that.  The repair to his Left Pulmonary Artery was not as successful, unfortunately.  After more tests: a CT scan, x-rays and bloodwork we have been cleared to bring Jacob home but with the knowledge that he may need to return to SickKids for intervention in as little as a month.  Or it could be six months.  Or a year.  Or until his final stage Norwood procedure.  There is no way of knowing.  The doctor's here are fairly comfortable with Jacob coming home, but insist that he be watched very closely when we are home.

So we are bringing our Superbaby home again, I am excited to get back into the routine of our crazy life.  Jacob is coming home with a heart that is much stronger and more stable than it was when we came to Toronto.  His little heart is working half as hard as it was before his Glenn procedure.  This complication with his LPA means that we are coming home with the knowledge that we need to be ready to go again at moment's notice.  That is all the more reason to live a Carpe Diem lifestyle with each day we are given.  I believe that our God has this all under control.

Jacob's improved heart function has already made noticeable improvements in his life.  My ever-vomiting child has only vomited twice since his Glenn procedure,and has been having typical baby spitups instead of full out projectile vomits, and this is because of the improved circulation in his body.  Jacob has also had no blood in his stool since before the Glenn, even though trace amounts of dairy are in the food that I consume daily.  I'm wondering if this is also related to the Glenn, but that's a conversation to have with the cardiologist and dietitian when we get home.

While we were here Jacob's cardiologist, the surgeon and several others on his medical team have commented on his size.  They think he's big! It blows my mind a little, because he looks small to me...but on the day of his post-op checkup at SickKids I took this picture of him with one of our favourite members of Jake's team - the Single Ventricle Nurse Practitioner, Jenny.  In this picture he looks big.  My little six month old...maybe I should reward him with some icing after he eats his cereal tomorrow? :)

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.