Austin

Lately I have been finding myself thinking about Jacob's future...there is more than a little worry that accompanies any thoughts that go past today's timeline.  Only God knows what is going to be...and my worrying will not change that - but worrying is a Mother's territory, even with  a child with no health issues.  I have worried over Georgia since she was born, and now I worry over Jacob as well each day.  I am doing my best to trust in God, that my babies will be safe and get to grow up and lead happy lives.

 Last night I received an email from a perfect stranger who lives in the US.  I am feeling so thankful for the message that came through this email.  You know who you are - thank you for taking the time to write me that note! Somewhere out there is a 16 year old boy named Austin who also has DILV.  Austin has had the three stage Fontan procedure that Jacob has started, and is now a high school student.  Guess what Austin does? He plays football! He runs track and field! He plays recreational basketball! Austin's mom tells me that he wants to go hiking in the Grand Canyon in the near future - how amazing is that? When I read the email from Austin's mom it gave me such excitement and hope for Jacob's future.  This morning when I re-read the email it brought me to tears and caused me to pray over my baby boy - that God would grant him the opportunity to grow into a healthy 16 year old who has lived such a full life, and still has the rest of his future to embrace.  I don't know Austin, but I am thankful for him and for his Mom's willingness to share the success story of her own superhero.

Looking at Jacob now I see an adorable baby wearing only a diaper because it's the hottest day we have seen here in 17 years...I see his feeding tube, and wish he would drink...I see his scar that is healing beautifully and know that in a couple of months it will be reopened and I'll be able to watch his little heart beating inside of his chest once again...I see his reddish hair that comes from my Mother's side of the family...I see his gorgeous blue eyes and long, long eyelashes....I see his smile and how it lights up his whole face - Jacob smiles just as much with his eyes as he does with his lips...I see the long fingers that love to play with his own hair....I see toes that I love to kiss, and that tickle him when I touch...I see his skinny legs and arms, and wish for plump baby rolls someday soon...but most of all, I see a miracle.  I see MY miracle.  And I am so thankful and overflowing with love for him and his spirited sister.  At each visit to the cardiologist's office here I see a poster for a support group for parents of children with heart defects living in NL.  On the bottom of this poster is a quote that has become a regularly used part of my life - "most people never get to meet their hero.  I gave birth to mine."  Truer words have never been spoken.  And right now when I look at Jacob, it's not hard to imagine him as an energetic sixteen year old who loves life, is proud of all that he has overcome, is not afraid to show his scars to the world, and who is healthy enough to regularly play sports and want to hike in the Grand Canyon.  Thank you to Austin and his Mom for helping me envision that for my son's future.

This is Jake just about 10 minutes ago, laughing as I kiss his belly...Baby Jake, I hope you can find this much joy in life every single day of your life.  Love you, sweet boy!

Blessings

I don't claim to have the right answers to my big questions, or to have an understanding of how the world works, but there are some things that I know to be true.  Here are a few of the biggest truths in my life:

• Life is hard.  Or as Glennon Melton would say, life is "brutiful" - brutal and beautiful.
• The biggest devastation of your life can become the most wonderful part of your life - from a diagnosis that the majority of pregnant mothers choose to terminate, to the handsome baby who has whole heartedly completed our family.
• Having a sick child is the scariest experience of life - every word from health professionals is over analysed, every number on a monitor, echo cardiogram or blood test is a constant worry, germs have become public enemy number one, and in the background of every happy moment is the worry of what may happen in the next moment.
• Even though we have declared war on germs, my four year old will make sure she touches the dirtiest surfaces existing wherever we go - touch with her hands, lips, tongue...such places as the shopping cart handle at WalMart or the fish tank at the Janeway...ew!
• There is not enough hand sanitizer in the world to satisfy me.
• Jacob is my child.  He does not belong to the health care system, the doctors or the nurses.  Thank you to Doctor T. for reminding me of this fact, and giving me back some control over Jacob's life.

• It's ok to accept help - in fact, it's sometimes the best thing you can do for yourself.  Thank you go those who have offered help, or just went ahead and helped anyway.  Especially my Mom, Dad and Sister - you have all gone way beyond the call of duty for me and Jacob.  I love you.
• Knowing other Moms who have been through this, and being able to share with them and learn from them is an irreplaceable gift.  Last night I was able to get out for a couple of hours and get a lovely pedicure with another heart Mom who has become a real friend - Daina :)
• God is good.  I'll never understand why Jacob's heart was designed the way it is, but I know without a doubt that without my faith I would not be able to do this.  No way, no how.  His strength is perfect, when my strength is gone.  He'll carry me when I can't carry on.  Raised in his power, the weak become strong.  I'm living proof of that!

Jacob now weighs in at 11 lbs 6 oz.  Two days ago that was 11 lbs 8 oz, but hopefully it won't go down any more.  We are still struggling to figure out whether or not Jacob has an allergy to cows milk protein - I am not convinced at all, but the GI is convinced.  GI wants me to stop giving Jake my expressed breastmilk - but I was able to get them to agree to give us another 2 weeks before we do anything that drastic.  It's been 5 days of blood free stool for Jake - I am seriously hoping that he has turned a corner with this issue.  Please, God! In terms of feeding, things have gone downhill.  Jake is no longer breastfeeding, and no longer bottle feeding - he is flat out refusing to do either of those things.  But at the same time, he can spend an hour sucking loudly on his pacifier - so I have hope that he will start drinking again.   It has been said to me twice now that after his next surgery he will have more strength and endurance and may be able to drink more on his own.  So, once again I am receiving a lesson in patience.  Jacob's poor little legs have become lumpy and hard at his enox injection sites, so we are now giving him the injections in his arms.  Precious boy - he's so brave, but the arm injections seem to hurt him more than in the legs.  It makes this Momma sad :(

  SuperBaby is happy!

Today Jake recieved his first round of immunizations.  Poor little tyke - those needles are big! Jacob was very upset about each injection, but when snuggled close to my chest he calmed right down.  I've been checking for any change in terms of a temperature or oxygen levels, but all seems to be okay.  Knock on wood and send up a prayer that it stays that way.  Overall Jacob's oxygen levels are dropping slowly - this is normal because as he grows a greater strain is place on the shunt that was created for him during his first surgery.  This is a temporary shunt, and not able to sustain his blood flow needs as he gets bigger - we are praying for it to be strong enough to sustain him until at least September so we can get some weight on his little bones before they place him back on the operating table at SickKids.  Now...this Momma is exhausted.  Time for a bath and a couple of hours of sound sleep before Jake's next feeding.  Please keep the prayers coming - Jake is doing well but he is not out of the woods yet.  

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.

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!

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.  

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 :)

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)

3 He heals the brokenhearted
    and binds up their wounds.