Thursday, June 27, 2013

Perfection.


This is one of the beautiful pictures taken by Pretty Pictures last week.  That's some amazing talent there.  Thank you, Vanessa! They are images I will treasure forever.


It seems that my little half heart has more lessons in store for me.  I thought I had grasped the concept of one day at a time during his stay at SickKids, but apparently I now need to relearn that lesson.  Jake is doing well overall and he has started gaining weight with the switch to dairy free.  Yesterday he weighed in at 10 lb 8 1/2 oz at our cardiology clinic visit.  The blood in his stool is still there, and some days there is quite a lot of it, I haven't gotten a clear answer as to why this would be.  The cows milk protein allergy was supposed to be the solution, but he is now having my breastmilk (which is dairy free because of my diet), and Neocate formula for supplementation - this formula has the cows milk protein 100% broken down already.  And the blood is persisting.  Another suggestion was that he might have polyp on his bowel wall, but that has not been followed up on at this point.  This is going to be a topic of discussion for us at our cardiology appointment tomorrow.  In terms of feeding I am beginning to feel that his NG tube is going to be around for awhile.  Jake has been nursing almost exclusively, with one bottle during the night at the feed that Jon does so I can sleep.  The nursing sessions are very short, and usually end with him sleeping or getting frustrated with all of the work.  I'm trying to persevere, but this process is teaching me patience on a new level.  The visit to the cardiology clinic yesterday was unscheduled, but Jake's oxygen saturation levels had dropped down as low as 66 so the cardiologist on call wanted to examine him.  By the time we got to the clinic Jake's levels were again mid-80s, which is his usual range.  The examination went well, with lots of smiles and coos from Jake directed towards his cardiologist - who is an awesome person and doctor and that Jake already seems to love.

I thought I would share this picture of Georgia comforting her little brother after his  morning Enox injection :) Jake loves his big sis and always has a smile ready for her!



Living in the moment, patience, loving unconditionally...these are all lessons that Jake is teaching me over and over again.  Our whole family went back to church Sunday past...and that was so wonderful.  When Major Judy welcomed Jake back it was all I could do not to bawl all over him.  And aptly enough, the focus for the sermon was the new movie Man of Steel - Jake got special mention as the Citadel's own Superman :) After the service we had a family lunch at Boston Pizza, and my comfort level with feeding Jake outside the house is pretty good now.  I was stood by the end of the table rocking him and holding up his NG gravity feed for a good part of the meal - we get some stares but when people notice the tape on his face they seem to be reasonable enough not to make any comments or stare too hard.  That being said, I have had a few adults stare so long and hard that I have physically removed Jake from their sight while doing my best now to make a comment or glare at them.  It's hard though - Jake is perfect in every way to me, but many people do not see his perfection - all they see is the tube going into his nose and the tape on his face.  Here is the perfection that I see, and my entire heart all wrapped up in these two amazing children:


This picture is a pretty accurate indication of our life right now, with this sibling moment in the forefront and in the background a baby scale, hand sanitizer and lysol wipes.  Thank you Lord for these moments, and even for the frustrations that come with them.  Give  me daily strength to be the Mom that these two blessings need.

Monday, June 24, 2013

Baby Ava

My post tonight concerns a sweet little girl who has been on my heart ever since Jake and I left SickKids.  In the room across the hall from us on 4D there was a sweet girl named Ava and her Mom - Lisa.  I can't claim to know them well, but in my conversations with Lisa she was incredibly upbeat and had a wonderful attitude that I admired.  Her strength was obvious, and her love for her children - all 5 of them - was too.  Ava's mom had shared a little of their journey with me, telling me that Ava had Hypoplastic Left Heart Syndrome (HLHS), which was Jake's original diagnosis.  Further examination of Jake's heart showed that he had DILV and Hypoplastic RIGHT Heart Syndrome (HRHS) instead, but both Ava and Jake's conditions require the Norwood, Glenn and Fontan operations.  In Ava's case when she returned to SickKids for her Glenn, her family was told that she was not a candidate for this surgery but instead needed a heart transplant.  The wait list for a heart is usually at least 6 months.  During my days at SickKids I met families who had been waiting for a heart for their child for anywhere from 6-9 months...I cannot imagine the frustration felt by these families as they wait with their children.  To Ava's Mom, if you are reading this, please know that you and Ava and the rest of your family are in my thoughts and prayers.  Forgive me if I got any of the information about Ava wrong.  Jake has an amazing prayer support team from all over the world, and tonight I am asking for each of you who have prayed so long and hard for Jake to please pray for Ava too.  Your faith has been inspirational to me, and is helping  me along my own journey with Jake.  To my followers, if you'd like to follow along, here is the link to 6 and a Half Hearts - Ava's blog: www.sixandahalfhearts.com

I'd like to borrow the verse used by Ava's Mom in her latest blog post to claim for both Ava and Jacob today:

Psalm 31:24

24   Be strong, and let your heart take courage,  all you who wait for the Lord!

Thursday, June 20, 2013

10 lbs!


I had to share this beautiful picture of my boy in his fisherman knit sweater, compliments of a very sweet lady.  At our checkup yesterday with the dietician, OT and cardiology we found out that Jacob has hit the 10 lb mark finally! He weighed in at 10 lbs 2 oz, with a centimetre of growth in head circumference and height in just a week.  One astounding development - to me anyway - is that Jacob is now nursing again, and like a champ too! Jake tires very easily, so he cannot finish a feed himself yet...but that day is coming with a little more growth and strength.  

Monday, June 17, 2013

The sweetest smile...


At Jake's last cardiology appointment he had gained...*drumroll please*...

6  ounces, give or take a 3 ounce feed! It seems that switching to the hypoallergenic formula has made a big difference to his digestion, and is allowing him to keep the food inside long enough to gain some weight.  You go, super baby!

In other news, on Saturday past baby Jake rolled over all by himself for the first time! Daddy wasn't quick enough to get a picture of him rolling, but here was the end result :)


Thursday, June 13, 2013

Our journey continues...

Jake enjoying playtime on his mat!


There is really no place like home.  The days since we left the Janeway have been wonderful, despite being the busiest I have ever been in my entire life.  Jake's schedule of medications, and his feeding schedule combined with his feeding issues, his doctor and specialist appointments, plus all of our normal life responsibilities and keeping Georgia happy make for one very tired (but very happy) Momma and Daddy.  Last Sunday we found blood in Jake's stool, which brought on a very real fear that his NEC was reoccuring, but the cardiologist on call was able to do some testing and reassure us that this was very unlikely to be the case.  I was very impressed with the Janeway's response when I brought Jake in - they did the triage in an isolation room to protect him from any germs in the waiting area, kept him isolated and with his own nurse for our entire stay.  Our waiting room visit was so short I didn't even get to sit down before we were called in.  Thank you to the Janeway for that quick response, and for caring enough to keep Jake safe from everyday germs! To make matters even better on Sunday, Jon had left at 6 am for a business trip to Boston - but thankfully my Mom and Dad had come in to help me out and Georgia was able to say with Mom while Dad went with us to Emerge.  A full assessment, abdominal x ray, and two bloodwork pokes later we were on our way home.

Two days later at his cardiology checkup Jake still had not gained any weight - he has been steady at 9 lbs 8 3/4 oz since we got home, despite round the clock and calorie fortified feeds.  Jake was sent down to see the dietician who listened to our description of Jake's eating habits and his poops (sorry, TMI, I know!) and is now convinced that he has a cow's milk protein allergy.  The formula fortification was switched to Nutrimigen A+, which has the cow's milk protein already broken down, and I was directed to stop eating dairy.  It has been only two full days since we changed his formula and my diet, but it seems like there is less blood in the stool, less frequent and less painful poops as a result.  I personally am missing milk like crazy, and am not fond of the almond milk variety, but maybe it will grow on me? The two things that I have not figured out how to replace with a dairy free version are cheese and chocolate.  If you know me well, cheese and chocolate are two of my absolute favourite things to eat - and to eat in large quantities for that matter! One friend has told me that bulk barn carries soy chocolate that tastes like milk chocolate...it's worth a shot, but I'll believe it when I taste it! And if anyone has a solution to my cheese dilemma, I'd love to hear it!

I am praying that at our checkup tomorrow my skinny little boy has gained something...even an ounce would make me happy at this point! According to the American Heart Association, "Healthy babies usually double their birth weight between four and five months of age. Infants and children with congenital heart disease and congestive heart failure or cyanosis (blueness) tend to gain weight more slowly. An eight-ounce to one-pound gain in a month may be an acceptable weight gain for a baby with a heart defect." (www.heart.org)  8 ounces to one pound in a month! Seriously! At this point in Georgia's life, she was often gaining a pound or half a pound between weekly visits to the breastfeeding clinic.  Jacob's heart surgeon was not kidding when he told me that Jake's development would be regularly testing my patience!

I know how blessed I am to be home with my baby, and he has come so far in his little life.  The feeding issues and weight gain are worrying and frustrating at times, but they are not life threatening.  I'm so thankful to God for having brought us this far. Our journey with Jake's heart is far from over, but I know that our family is not walking this path alone.   Psalm 147 has a beautiful message for Jake's life, and a perfect outlook for the days ahead.

Psalm 147:3

New International Version (NIV)
He heals the brokenhearted
    and binds up their wounds.




Tuesday, June 4, 2013

Home

Our final week at SickKids dragged on and on...knowing that we were able to come home, and were waiting for air ambulance transport made each day feel like 5 days.  After waiting for days for a air ambulance to come, with nothing happening, my amazing Dad got on the phone to the NL Minister of Health and her deputy ministers.  I wasn't here to witness it, but my Mom and sister tell me that Dad was constantly on the phone to someone, or waiting for a call back from someone, or emailing someone until the air ambulance arrived in Toronto to pick us up.  Thanks to Susan Sullivan, our Minister of Health for kick starting the process to get Jake home.  After two false starts - the air ambulance broke down, and a thunder and lightning storm - the air ambulance crew finally arrived at SickKids at 8pm on Tuesday night.  They then announced that we would have to wait until  morning to fly out because the pilot needed to rest...so one more delay and then on Wednesday morning at 5:30 AM I walked out of the hospital and into the real world with Jacob for the first time in his life!  There was another scare when we sat on the tarmac on Toronto Island and thick fog surrounded us, but the fog lifted after half an hour and the tiny air ambulance took off for Fredricton and then St. John's.  Praise God for that! If I had to spend one more hour in our room on 4D I think I would have been certifiably crazy.  Jake and I spent those hours pacing the halls of SickKids and constantly praying for rescue as if we had been shipwrecked on a desert island for the first 56 days of his life.  When we landed in St. John's I cheered, clapped my hands, and cried...all at once.  Jacob slept through all that excitement :)

The moment that the ambulance pulled up to the Janeway and my family was waiting outside for us is indescribable.  All I can say is that everyone cried - everyone except Jake and Georgia.


Jacob with his lovely air ambulance crew - Susann and Ann. Thanks for bringing us home!

Jacob spent less than 24 hours at the Janeway once admitted, and was released after he had another Echo.  That echo showed another complication that needs to be dealt with during Jake's next surgery, and may move the timeline of his surgery to earlier if it affects his Oxygen sats, but we are not going to worry about that right now.  Jake is home for awhile, and every moment is to be celebrated and cherished.  Momma, Daddy and big Sis brought him to his home and showed him his house and his bedroom - it was a sweet moment.  Taking him out of the hospital and into the real world meant that for the first time in his life there was no one there to remind us to give him his meds or to check his oxygen sats...so we have been adjusting to a very busy schedule of feeds every three hours (bottle and NG tube) and what seems like constant medication.  To top it all off, our washer broke when we got home :) So for the moment my house is a little messier and my life is crazy busy but my heart is very full.  Every moment of having Georgia and Jake together is amazing.

My new mortal enemy and fear is GERMS.  We have gone hand sanitizer crazy, and no one gains entry to our house without using it for the next 3-5 years :)  Today was Jake's first Janeway outpatient appointment - cardiology and the pacemaker clinic.  It was so nice to stroll into the hospital with him, and then out of the hospital 1.5 hours later with him to pick big Sis up from daycare.  The NG feeds are interesting when you are outside the house - here's a shot of us mid-feed in the Janeway Cardiology waiting room:



My treasure is now waking up early demanding his  next feed.  Please continue to pray for Jake as his heart is fragile until his second surgery happens.  My big goal is to get rid of the NG and have Jake plump up...he's still  much too skinny and weighed in at only 9 lbs 8 oz today.  Still, God is good, and He brought Jake home.  I am so thankful for that.