Friday, November 29, 2013

Labatt Family Heart Centre

There are so many familiar faces in this video.  Cardiac Critical Care and 4D are both featured.  This is Jacob's home away from home.  This is the place that has saved his life.  I am forever thankful for Sick Kids and the Labatt Family Heart Centre.



Disheartened

Sometimes it's so hard to pin down how I am feeling and put it into words.  The last two days I have found myself feeling down, worried and anxious - much more than usual.  I think it was triggered by the scheduling of Jacob's RSV shot for December and all the warnings that came with the call, several appointment changes, a scare with baby Sara at SickKids and reading an article that was written about a single ventricle heart kid we knew who has now passed away.  It's compounded and intensified by the frustration that I sometimes feel when trying to get Jake to eat or drink orally.  Jake likes food, but he likes it in very small amounts - amounts that the dietician says are insufficient for his needs.  Trying to get Jake to eat 1-2 ounces of solid food can take almost an hour of coaxing, distraction and begging - it's hard and tiring when there is no improvement or if he refuses to eat at all it's very disheartening.  

The other side of the battle is that I am so lucky to have Jake, and for him to be doing as well as he is is a gift in itself.  American thanksgiving has gotten me thinking about my blessings once again.  I found an excerpt from a blog (http://www.aholyexperience.com) that talks about thankfulness with this quote as the context:

If anyone would tell you the shortest, surest way to all happiness—
he must tell you to make it a rule to yourself to thank and praise God for everything that happens to you.
For it is certain that whatever seeming calamity happens to you, if you thank and praise God for it, you turn it into a blessing.
Could you therefore work miracles, you could not do more for yourself than by this thankful spirit, for it heals with a word speaking, and turns all that it touches into happiness.
… it be the noblest sacrifice that the greatest Saint can offer unto God.”

This is from an old text, written in 1728, but it spoke to me when I stumbled upon it yesterday.  I have highlighted the parts that really stood out in my interpretation.  I am called to give thanks to God regardless of my circumstances - and in the last two days I have done anything but give thanks.  I have been grumbling and complaining and asking why - being a big whineing baby in my prayers.  But I know in my heart that when I thank God for my life and every aspect of it, what was a burden becomes a real blessing.  Jake's illness is a burden that I cannot carry along on my own shoulders - but when I take it to God and thank him for giving Jake to me and for the strength to care for him each day - I find happiness.  True happiness - not the kind of happiness that comes from taking part in Black Friday consumerism madness - but the kind of happiness that has it's roots deep in the heart.  Sacrifice is a concept that I have often struggled with - I am a person who loves comfort of all kinds, and the very idea of sacrificing something that I have or hold dear makes me want to run for the hills.  Jake has taught me in his almost 8 months of life that I need to sacrifice the "ideal life" and "ultimate plan" that I have been forming in my mind since I was old enough to think about having my own family.  My plan of having 2-3 healthy kids and a relatively easy life has been stolen from me by reality.  But I would never change it  now that I have a new reality - Jake and Georgia and Jon are my reality.  And I won't lie, some days are really hard and filled with self doubt and outright fear of what the future may hold.  But I've sacrificed my plans and accepted what God wants for me instead.  

This time last year we recieved Jake's initial diagnosis - HLHS (which turned out to actually be DILV and HRHS) - and I went through some of the most depressing and sad days of my life.  I questioned everything - and found very few answers.  Fast forward to a year later and here I am sitting in my kitchen typing this blog while Jake sleeps in his Father's arms and Georgia snores in her bedroom.  I no longer take anything for granted...I am thankful for everything.  I have days when I lose my perspective, but when I find it again I know without a doubt that I am blessed and that God is good through it all.  Tonight I find myself seeking that perspective once again.  Maybe a good night's sleep will help to restore it.  Christmas is right around the corner - Jake's 1st Christmas! - and I want to enjoy it to the fullest and experience all the joy that the season has to offer for me and my family.  So here's to finding that perspective, and to being thankful and happy once again.  

Tuesday, November 26, 2013

I am so blessed.

Today was Jake's latest sedated echo...and the report was good.  Jake is fine for the time being, with no further narrowing of his left pulmonary artery and nothing else to cause concern.  In 3 weeks we go back for another sedated echo just days before Christmas.  Leading up to the appointment this morning my stomach was all nervous, butterflies and sleep interruptions.  My fear was that the LPA would be narrowed and we would be told that we had to spend Christmas in Toronto.  But thankfully...it was only irrational fear inside my head.  I am fairly confident that we are spending Christmas at home.

Our biggest battle at the moment is feeding.  Jake is eating solids well - meats, veggies, fruits and cereals.  I've discovered that if I combine anything with carrot he will eat it.  That boy loves him some carrots :) I get a lot of satisfaction from the process of making baby food for him.  I often feel that I am unable to do anything to help Jake because he is so complex...but I can make wholesome, natural food for him to eat.  That's something, at least.  I can't seem to make any progress with Jake's liquid feeding - there has been no progression for months now.  I bought a special bottle for babies with oral feeding issues, and at it's first use today Jake drank a pitiful 4 mls.  I have no idea which way to go with getting him to drink.  We will soon be facing the issue of a permanent feeding tube in his stomach - the G tube.  I want so badly to spare Jake another surgery but I don't have any idea how to prevent it.  One day at a time, one day at a time.  Maybe we'll get a miracle.  On the positive side, and it is a HUGE positive - Jon and I now sleep through the night as Jake will tolerate larger feeds in the day to make up for omitting the middle of the night feed.   The last feed of Jake's day is at midnight, so we are usually in bed by 1 am.  And it's lovely...so very lovely :)

With the cold and flu season also comes RSV season (Respitory Syncytial Virus) - a very common infection of the lungs and breathing passages.  For a baby with a heart like Jake's this very common and easily treated virus could be fatal.  Fatal.  My heart stopped for a beat when our cardiologist told me this.  So beginning in December Jake will be recieving Synagis shots each month, which contain antibodies to help him fight the RSV virus if he gets it.  It's not a vaccination, because there is no vaccination for RSV, but it will help in the event that Jake gets infected.  The five months worth of shots will cost $35,000 just for Jacob.  Seriously, I kid you not.  I am so thankful for our Canadian healthcare system because Jon and I do not have $35,000 to give away!  Only babies who meet strict criteria receive these shots, and heart babies are among them.

We had our Christmas pictures done with Pretty Pictures...look how beautiful my children are.  I am so blessed.  Thank you, Lord!



Baby Sara is still at SickKids, but I just got a message from Danielle saying that she moved from Cardiac Critical Care to 4D today.  Way to go, Superbaby Sara!  Please continue to pray for Sara and her parents.  It's a long, hard road that we know all too well.  Sara now has a blog at www.sarasheartofgold.wordpress.com , please have a visit to her site too!


Tuesday, November 12, 2013

I love you, old man.

Today is my husband's birthday, and I feel like sharing with the world just how amazing he is.  Jon is an incredible father.  He always has time to get down on the floor and play, to cuddle and to love his kids (and his nephew too!).  I am so thankful that my children have this man for their Dad.  Here's Jon with a very young Jake in May at SickKids hospital.  Look how different Jake looked back then!  They say that it takes a strong man to be able to show his emotions, and Jon and I have been able to cry together and laugh together and love our family together.  That's not to pretend that things are all perfect  - they're not! Having a sick child has put a very real strain on our marriage, but underneath it all one thing remains true - I love this man.  Georgia and Jacob are so very lucky.  I am so very lucky.






Georgia loves her "Dadda" - she is a Daddy's girl through and through.  She also has him wrapped around her little finger, but I know that Jon wouldn't have it any other way.  I think the picture below says it all.





Happy birthday Honey.  I know you don't like attention, but you deserve this post.  Thanks for putting up with me through all my highs and lows, my impossibilities and everything that life has thrown at us in our 11 years together.  I love you, old  man.


Friday, November 8, 2013

Sideways rain and imperfection

This has been a day of mixed blessings.  It started with a typical Jacob and Momma morning - diaper changes, Enox injection and meds, a feed and then rushing to get ready and out the door to a very important appointment.  Outside it was high winds and sideways pouring rain...typical St. John's weather.  It was nearly impossible to find a parking spot at the hospital, and then I got drenched in the trek from our car to the door.  The blanket I had placed over Jake's carseat to keep him dry was stolen by the wind and we had to chase it across the wet parking lot.  Then we get into the waiting area to register and are told that this very important appointment was in fact YESTERDAY.  Oh dear.  After calling to reschedule, Jake and I headed back to the car and proceeded to become even more soaked with rain.  Once in our car we had 45 minutes to kill until our next appointment at the other side of town, and I had a mini  mental breakdown and sobbed in the car until I called my Mom who as usual knew just the right words to give me the perspective and calmness that I needed.  I felt like I had failed as a Mom at that moment, and that I had let Jacob down by writing the wrong date in my planner.  Once calm, I headed to the nearest Mcdonalds and proceeded to load up on greasy food, which tasted fantastic but made me feel worse afterwards.  At the next appointment the nurse turned out to be a member of my Mom's congregation, who knew Jacob's story, and had so many words of encouragement for me that it was as if God himself had placed her in my path for that very moment.  I sat in the exam room while we chatted thinking in the back of my mind that I serve an awesome God.  Looking back on the morning now I can see the other small blessings peeking out of the awfulness - finally getting a parking spot relatively close to the hospital, the smile on Jacob's face as he peeked out from under the car seat cover at me, the soothing tone of Mom's voice just when I needed to hear it, and finally the perfect person placed in direct contact with myself and Jake at just the right time.

To someone else the events of the morning might not seem like a big deal, but to me it was huge.  Jacob's appointments are the clock that my life has run by for the last 7 months, and this was the first time I had ever missed one.  Mommy guilt has become a pervasive part of my life - I am always feeling guilty for something.  There is always something that I feel I need to do, or am not doing well enough with regards to my kids.  I want to spend more time with Georgia, I want to do more to help Jake learn to eat, I want to do more enrichment and learning activities with Georgia, I want Jake to have the happiest day possible...there is always something more that I want to do, and frequently don't have the time or energy to make happen.  I have been talking to a couple of other Heart Moms for awhile now, and one message comes through repeatedly from them - I am being too hard on  myself.  Sometimes I know this to be true, and other times I just feel like it's all too much for any one person and I have to do the best I can and be satisfied with that.  I know that God doesn't make mistakes, but there have been moments when I have genuinely wondered what He was thinking when he gave me all this responsibility.  I don't know if I can handle it.  But I have been handling it.  And my kids are both doing well.  Everything is far from perfect, but they are happy and well cared for.  My house will never be as tidy as my Sister's house, but it's a home filled with love and covered in toys.  I have to resign myself to this.  And Laura, please come clean my house :) Just kidding, Sis! Life is imperfectly perfect in my house.

Look at this gem from the first time my boy tried carrots:



So sweet.  Orange poop and all :)

Wednesday, November 6, 2013

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.