Tuesday 8 January 2013

Second Wind

Sadly, today I did not get any smiles out of Hope.  She did have a couple of good naps and appears to be retching a touch less with the new anti-nausea meds.  She is now getting them around the clock to give her a break from the constant gagging.  The diarrhea does not appear to be slowing down or improving, we've just added a terrible diaper rash to the mix.

It sounds like we'll be sitting down with GI and Cardiology on Wednesday in the late morning.  Please begin to pray about that upcoming meeting.  We really want to see some progress come out of this meeting.  So many things are undecided and nothing seems to be happening with Hope.  We found out that the heart cath is still being talked about.  We thought they had decided not to do it, but apparently it's more of a disagreement among the doctors.  

Today the nutritionist came to speak to me about Hope's feeds.  Hope has been losing weight and continues to weigh in at her July weight.  That's almost 6 months of her life without any weight gain, not very encouraging.  We have tried almost every specialty formula and trick to make her body accept food.  It doesn't appear she's willing to do this.  We are talking about taking some more extreme measures in getting Hope to eat.  Shawn and I are praying about what to do and if we feel comfortable with these ideas.  Please pray that God would give us wisdom as we decide what is ultimately best for Hope, but also what is best for our entire family.  

I'm exhausted.  Usually I have a few bad days and can quickly snap out of it.  For some reason I continue to struggle with feeling tired and yet have trouble sleeping at night.  Please continue to pray for me as I pull myself up each morning to spend the day with Hope.  I really hate not being able to spend my days with Sadie.  I know that Sadie is in good hands, but I desperately long to parent both of our girls.  It feels very strange to be a 'stay at home' mom that has a Nanny.  

Hopefully my second wind will come tomorrow morning and I'll be able to pull myself together this week.  I cherish the moments I get to spend with Hope when she's awake and happy in my arms.  Today she played with my lips and just stared at me, beautiful memories.  As we fail to move forward with Hope and her feeding intolerance seems to get worse, I start to worry that we'll lose her.  We know this is a reality of her condition, but it's not one I'm willing to face until her heart beats for the last time.

8 comments:

  1. I have come across your blog fom a friend who posted the link on facebook. Reading it has become part if my morning routine-every morning when I wake up and eat my breakfast I look up your blog to know how to support you through prayer-all the way from Belfast Northern Ireland. I pray you know God's peace and renewing energy today. God bless you for your honesty asking for prayer for your beautiful family. The praying continues!!
    Laura

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  2. I've been reading your blog for months now, because of a few of my friends who had posted a link on FB, and it has become a part of my morning routine as soon as I get to work too. Just wanted to remind you of all the strangers praying for you and Hope and Sadie and Shawn. We are praying for great improvements for Hope in early 2013!

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  3. We too read your blog through a friend's link on FB. We pray for strength and peace for you and Shawn. Although it's impossible to fully understand, we know that God loves Hope even more than you do, and He has a plan for her, just as He has a plan for you and Shawn and Sadie. We seek His mercy and grace on your behalf and ask that He will bless you with great comfort, wisdom, and renewed stamina.

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  4. I pray for Hope and your family every day. I am so very sorry that your lives have been so hard. I also remember that God has promised not to give us more than we can endure and that he has instructed us to rejoice always. We can do this because we know he is in charge. His promises are wonderful and he will keep them. One day he will set all things right. For now, I will pray that you will feel his presence very close to you and that he will give you what you need each day to be there for Hope and for the rest of your family too.

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  5. All my thoughts to you baby Hope. My little girl is a month older then you and I can't imagine how hard this is for all of you. My wish for you little one is health . You've been working so hard I hope a routine in your medical care that will allow your feeding to be successful, that your little body can grow stronger, that the medical procedures needed can be completed successfully and at long last your momma can take you home. xoxo baby girl

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  6. I too found your blog through a fb friend :) your little angel and the the rest of your family are always on my mind :) I haven't really been much if the "praying" type but can tell you I have prayed every day for your little lady since coming across your blog :) your strength and honesty is sooooo inspiring and that little angel is sooooo lucky to have you as a momma!!!

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  7. I also found your blog through a post on a Facebook site! I look daily for updates and although I don't know you, your family or your precious girl I find myself thinking of you often and wondering how little Hope is. I can't begin to imagine the heartache you must feel. It is, however, amazing to read the replies from dozens of other "strangers" that are following you and praying for little Hope. So many people are on your side!

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  8. Amy-I have been reading your posts as well through Facebook. I have been lifting you and your beautiful family to The Lord. My heart aches for you as I can see this is very difficult. I pray God will give you the strength you need. I pray for sweet little Hope that healing will come quickly and as well for dear Sadie as she just broke her leg. We are your family in Christ and many are praying for you! Hugs my dear sister in Christ. Terri from Lethbridge.

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