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.