Sunday, June 29, 2014

A goodnight kiss

These days we are being tied down to home when it comes to liquid feeding times for Jake - it is possible to feed him with the Nutren Jr. out of the house, but it is a tedious process that takes up a lot of time and usually ends in a frustrated Jake and a frustrated Momma.  Case in point: we wanted to have a fire in Mom and Dad's backyard tonight, and it was feed time for Jake so this was what we needed to rig up (Thanks Uncle Ryan for figuring it out, and Auntie Laura for risking life and limb to get the bag up there) to get the liquid to flow through the NG...

In case you can't tell, the feed bag is attached to two clothes hangers and then to Mom's clothesline...Yeah, we are getting creative these days without a feeding pump.  I finally gave in and bought a bigger NG for Jake - he has been having the same size since his birth (6.5 French for those other Tubies out there), but according to his OT there is no reason he can't go up a size to an 8 French, which may make the Nutren flow better.  The larger tube came in the mail this past week, so next tube change day we'll try it out.  I'm feeling a bit of apprehension about the change though, as it was such a struggle for us to get comfortable with the process of putting the tube in and I'm afraid a bigger tube may be harder to insert.  I don't know, but I don't see any way around it either :(

There is never a dull moment in this house, and Jake has very little fear, so this week he ended up falling face first onto the hardwood and putting his tooth through his top lip...look at the shiner he had...It didn't get him down for long, and it certainly didn't stop him from eating though.  Tough little man.

Remember baby Sara? I saw her today - she's getting so big, and is constantly happy and thriving at home with her parents.  It did my heart good :) And those of you who have been praying for Baby Owen - thank you and keep it up! Owen is exceeding the doctor's expectations and doing much better than expected.  July will most likely be his birth month, and he will need 2 surgeries in his first week of life so keep those prayers flowing for him and his Momma.

I've been fighting off anxiety this past week, needlessly thinking about Jake's next surgery.  I'm hoping it won't be until 2016, but it may be in 2015 depending on Jake's growth and his oxygen saturations.  I'm working on letting go of the worry once again - it seems to resurface every now and then.  Jacob is God's child - I know this and trust this.  But sometimes I wonder if I am strong enough to go through it all again, and some days I think the answer is no.  I often get people telling me how strong I am, and how they could never deal with all we have been through - but I don't feel strong.  I rarely feel strong.  But I have peace most of the time.  Peace and trust in God's plan for Jake's life.  Another source of my anxiety is how Georgia will deal with us needing to make another trip away, and have her life thrown into chaos once again.  But at the end of the day I leave it all with my God.  He's bigger than the boogie-man, as the Veggie Tales say.  I sincerely apologize if I sound like a broken record, but there is never a day that goes by that these worries are not in my mind.  Take heart in this verse from the Psalms:

At my last visit to the grocery store there was  sweet lady who told me that she read my blog and I wanted to say thank you to her for the kind words.  I'm sorry if I seemed distracted while in the lineup, but your words had me smiling as I walked out of the store and drove home.  Thank you for that.

Jake has been coughing a little this past week, but I'm hoping and praying that it won't develop into anything more complex.  We have had clearance from Cardiology to take Jake with us when we go around the Bay next month to visit both Seal Cove and Twillingate.  There are so many people in both places who can't wait to meet him for the first time.  It'll be an adventure for us, as the only place Jake has ever travelled outside of the metro area is to Toronto.  He was born in Toronto, so it might be time to screech Jake in, lol!

I'll leave you tonight with this sweet kiss...

1 comment:

  1. Hi Lisa,

    I've been following your blog since I learned of Jacob's diagnosis. I just wanted you to know I think and pray for him often. You are stronger than you think you are and I don't think you give yourself enough credit sometimes. You're an incredible mom to Georgia and Jake doing whatever you need to do for them even if it means sacrificing something yourself. I'm happy to hear Jake is doing well.

    Take care,
    Michelle Best (your former public health nurse on Georgia)