Tuesday, July 30, 2013

A mended heart is a special heart.

Since my last post a few significant things have happened...one of the best being that Jake has now weighed in at 12.5 lbs at his last dietician appointment, and weighed 12 lbs 12 oz this morning when I put him on our scale. Woo hoo - my little baby is finally getting some chub wub on his bones :)

To update from my last post regarding the Gastro doctor's advice that I stop expressing my breastmilk to give to Jake, I chose to follow my instinct and ignore that advice.  I gave myself a two week limit to see if the blood in Jake's stool would clear up, and if there were any other symptoms of a allergy.  It's incredible how things work out sometimes because since that day I saw that GI - over 2 weeks ago, there has been no blood in Jake's diaper.  NONE! And I have slowly been reintroducing dairy into my diet - I even had a piece of cheese last week -and there has been no change in Jake.  I see the GI on Thursday this week, so I'm very curious about what her take on this will be. There have been no significant improvements in the feeding department, but Jake is now taking some milk from a cup.  I know that sounds strange - I'm feeding my infant from a cup - but it's about 5-10 ml per feed, and the goal is not let Jake forget how to swallow.  Without daily practice the OT has told me he may forget how to swallow.  Now my new hopes for his feeding lie in him having more stamina after his Glenn surgery in September, and in the assurance I have been given that heart babies generally do better with solids than with fluids.  Jake had a developmental assessment session with the OT last week and while I knew that my baby was behind "normal" 3 month old development, it was still hard to hear the OT say that he was behind in terms of his neck and shoulder strength.  In the other departments Jake is fairly on par with the norm for this age, so I am thankful for that.  We have increase Jake's tummy time and other neck/shoulder exercises based on the OT's suggestions and I am already seeing some improvement.  Poor Jake hates his tummy time though, there is certainly nothing wrong with his lungs!

Last week I had another 10 years taken off my life, I'm sure, because when I checked his oxygen levels in the morning the monitor was telling me that Jake's heart rate was in the 60s.  With a pacemaker set at 120, this shouldn't have been possible.  We rushed off to the Janeway cardiology department, calling on the way, and once again we received exceptional care.  When Dr. T checked Jacob's heartrate and confirmed that it was in the 60s, I wanted to throw up.  My first thought was that the pacemaker was malfunctioning, and Jake was going to be airlifted to TO for a surgery.   It turned out that Jake had outgrown his pacemaker settings, and they just needed to be adjusted.  Thank God this adjustment is possible with a machine and a donut shaped apparatus placed over the part of his belly where the pacer lies -  nothing invasive.  We were out of the Janeway less than an hour later, with everything once again as it should be.

We received the official notice of Jake's heart cath at Sick Kids in the mail last week.  We are heading back to Toronto in early September, and if the heart cath shows that Jake's heart is ready, he will be booked for his Glenn sometime in the week following the cath.  I can't bear the thought of bringing Jake back to Sick Kids or back to the OR.  Our stay at Sick Kids in April-May was excruciating, and somehow I feel like this one will be worse.  I think it will be harder because I finally feel like Jake is mine -for the first 56 days of his life I often felt like he belonged to the doctors and nurses who were caring for him 24/7, and my input was minuscule.  Since coming home we have learned  how to care for Jake and meet all his needs, his smiling face lights up my whole world,  and he is finally mine.  I'll have to relinquish some of that control when we bring him back, and I don't know how I will manage that.  I am praying that we are able to get back into Ronald Mcdonald House with him, because that will make life much smoother for us as we wait for his Glenn and then during his recovery.  It will give us a clean, safe place to be a family while we wait and while Jake heals.  If you are still praying for us, please add this specific request to your list.   

We have scheduled a dedication ceremony for Jake at our church in  3 weeks.  Jacob was dedicated by his grandfather at Sick Kids hospital two days before his first open heart surgery, and that is a beautiful memory that I will forever treasure.  Our family would like to have a celebration with those who love Jacob and have been supporting us since the very beginning, so we're going to have a more official ceremony where  he can wear a dedication outfit, and we can be joined by our family and friends in celebrating Jacob as the true gift from God that he is.  Jon and I are working on a special addition to this ceremony, which I can share on this blog after August the 18th.

I can't believe it will be August in just a couple of days.  We have been home in NL for almost 2 months, and that has flown by.  As it gets closer to September I am getting more anxious, but I have to trust God and believe that He will bring Jake through this next hurdle.  I'm trying to contain my anxiety, and find myself feeling very down on some days - simply overwhelmed by the enormity of all this is going on in my life, and my children's lives.  Having my family living in the same city has helped a great deal in this respect - I can depend on my Mom and Dad, or my Sister to help bring me up when I get muddled down in life - they can always point out the bright side of things, and help me to see the good that lies behind the cloud of darkness that sometimes keeps me from being as happy as I should be.    Thank you for that.  Life is good.  My sweet boy is having a nap in his swing right now.  In two weeks Jon and I celebrate 9 years of marriage, and we have a whole lot to be celebrating this year!

Sending a shout out to Your Vinyl Destination for the t-shirts she made for our family.  Here's Jake modelling his:


"A mended heart is a special heart" is the message on the front.  On the back it says "Thank you SickKids!"

Sunday, July 21, 2013

Heart Mom


April 4, 2013


I'll never be the same.
They told me that my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart was breaking...
As, I'd loved him for so long.
I will not give up on this child...despite your best "advice".
I will give my child a chance...No matter what the price.
And I will learn all that I need...to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...I will not curse our fate.
The feeding pump beeps, at 3:00 a.m.
It serves as my reminder...
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings...
and I run to my sleeping child's bed...
I watch him then, for quite awhile...
Bend down and kiss his head
Then I cry for the parents whose lives have been broken,
And I look to God wondering why?
Oh Lord, I just can't know your ways...
No matter how I try.
And yet, I trust You to hold his life,
And guide us through each day
My mind says savor each moment he's here...
But my heart whispers,
"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good night's sleep...to learning every med...
From wondering will he be alright?
To watching him reach out his hands.
With every smile, my heart just melts.. despite life's harsh demands
For all who see that faded line...I look to them and smile...
You see, my child is loved so much...
I would face any trial.
That same scar I trace with my finger...
It's the door to his beautiful heart
I never guessed how much I'd love him...
Just as YOU loved him right from the start
A heart mom is always a heart mom...
Now wise beyond her years
And for those who have angels in heaven...
Our hearts share in all of your tears.
Everyday I will strive to remember...
You chose me for him and no other
And I will embrace that beautiful day...
When I became a "heart mother".

~Stephanie Husted

Monday, July 15, 2013

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!


Wednesday, July 10, 2013

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.