Thursday, 7 February 2013

A Solo Act

Solo is a bit misleading when I'm talking about my life with Hope.  I am in no way doing this alone.  I have the Lord of course, and an army of prayer warriors!  On top of that, I have volunteers cuddling with Hope in the evenings when I head out to rejuvenate and I have wonderful people that have made meals to keep me well fed.  I am not doing this alone and I feel extremely blessed.

Today was a fairly low key day with Hope.  She was very happy and I believe I got 5 smiles throughout the day!  It is so nice to see her smiling again, it has been a long wait.  I hope she continues to improve and is smiling more regularly for me.  She was not up a great deal in weight, but looked fluid overloaded to me.  The doctors are discussing starting her diuretics once again and I think this is a good idea.  Her X-ray didn't look too bad, but is still showing some fluid on the lungs.  Her chest tube is getting closer to falling out of position and may need to be removed tomorrow.  I've been told that for 3 days, so I believe God is holding that little tube in there!  Hope's drainage was down again today and appears to be improving, for that we are thankful!

They have finally heard from Boston!!  Sadly they just said that Hope is so complex and they want more of the experts to weigh in.  They want the liver specialists involved in the discussion as well.  This is good news as it gives us a well thought out opinion, but bad news as we must continue to wait!  They suggested it would take them a few more days, that means a week when you hear a doctor say that.  I have learned that 15 minutes is really an hour and tomorrow means 3 days from now.  We still have no word from Toronto.

During rounds the Cardiologist asked what I wanted to do.  I told him that we were ready to get back to Calgary and would rather go back and have to return, instead of waiting in Edmonton.  They agreed that this was a fair decision, especially since we don't know how long it will take to get a response from both centres.  They have made some changes to Hope's medications and want to wait and see how she responds.  If she does well and her drainage continues to be low, they will look at transferring her this weekend.  That means next week in doctor talk though!  I'm going to expect Tuesday and be satisfied with Wednesday.  This puts us back in that awkward position of trying to decide what to do with Shawn and Sadie moving here.  We have decided that if things look promising for us to head home while they're here on the weekend, they'll return to Calgary on Sunday night.  I will be disappointed if I don't get back to them and they have to return the following weekend.

I feel like I did fairly well on my "own" with Hope today.  I certainly missed my mom and her company, but enjoyed the day with Hope.  I have started something terrible with her, I crawl into the crib to help her fall asleep at nap time.  It works wonderfully, but is going to haunt me when I get home with her one day.  I am not crawling in the crib at home, and won't have the luxury of napping with her when Sadie is there too.  I guess I feel sorry for Hope and feel like she should have whatever she wants to be happy.  One day I'll have to stop that mentality, but for now I think it works!


  1. From one mom to another... Don't worry about "bad habits"... Just enjoy those precious cuddles ;)

  2. continue too nap with hope body too body contact is so important. You both need these times together. Praying for your family.

  3. Do whatever works to keep Hope happy and comfy. Worry about weaning her from any bad habits once she is home and fully in your care. Prayers and hopes that this may happen soon. Sending always from Ontario.

  4. Hey just thought I'd write another note. I am praying for you to get back to Calgary (where my friend and ex-fience lives) and that Hope will get whatever she needs from you and the Dr.'s. Waiting is so hard but you seem to be good at it although like anyone you get frustrated! That seems normal to me. Will be thinking of and praying for you, your family and of course Hope.

    Naomi-in Ontario

  5. Your an incredible woman. Been following your blog for a few months. It's crazy how much I've grown to care and pray for your family and I don't even know you. Thank you for sharing your journey. I wish i could be more like you in your thankfulness through hard times. Praying and thinking if you and your little girl.
    P.s. Cuddle that girl like crazy!

  6. Don't worry about creating a bad habit. I would do the something with my kids if they were in Hope's situation.

  7. If it were me I would be cuddling her to sleep as well. She physically needs the touch and so do you. When you are home with her, Sadie can join in for the cuddle time and go play once her sister is sleeping. You are a good mom. Do not appologise. God bless you.


  8. Don't feel bad. I have cuddled every one of my four babies to sleep for naps, and then usually got up after they fell asleep. That closeness is so comforting for little ones, and relaxing for us as moms too! There is not much better than a nap with a baby! Relish it, and if you have to keep doing it when you get home, oh well! Plug in a movie for Sadie and lay down with the both of them. <3