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.