Better?

Abby's new J-tube might actually be working.  I wish I could feel completely excited about a few good days, but it's been such a long road, I can't help but feel cautious. 

She's far less nauseated.  That is a huge blessing.  It has been horrible to watch her feel so sick for so long.  She's still occasionally nauseous, but not the constant sick she's been.  The J tube has it's own issues for sure.  Her belly distends as the intestines swell with her feedings.  She seems able to handle it without too much discomfort though.  We still have several issues to work out, but better is better. 

We have been able to work up to 12 hours a day (from 9) in the last few days.  We have also been able to raise the rate a little today.  2 of the 4 feedings today ran at 45 instead of 40.  15cc's (1/2 tsp) more doesn't sound like much, but it really is for her. 

Day after day with no progress is the hardest thing to deal with.  Waking up each day, trying to be positive and hopeful when every night I go to sleep battle-weary from long, sick days became almost impossible.  Knowing that there are very few (I haven't heard of any) good outcomes for this problem has weighed on my heart heavily.  So even though it's 3 hours and 15cc's of progress, it's there and I'm thankful. 

When Emily and Abby were babies progress used to be few and far between too.  We would work and work in therapy and at home for any little thing.  A swipe at a toy; a propped up sit; a muttered sound; a taste of a new food; tolerating the feel of a new texture.  I remember so vividly how desperate I would become for any sort of improvement, knowing that each day of the same left them further away from the future I prayed they would have. 

When months would go by, I'd become frantic.  I prayed and prayed for more for them.  Then I would hear a new sound, or watch  a hand reach out to hit a toy.  I laughed, cried, and danced around the room to celebrate their accomplishments.  Relief and gratefulness would pour through me as I realized we weren't done.  We weren't already at the end  of what they could do physically. 

Here I sit again, hoping each day that I'm not at an end with Abby.  Every day that passes is harder and harder to feel like she can get better.  Just when I'm not sure I can endure the loss of another day, she does something different.  Something better. 

I'm thankful for better, for however long the Lord allows.  I really needed something to change, and  something changed. 

I have personally never been through anything like this year before.  Even when the twins were born and diagnosed.  The grief and sorrow of that time was overwhelming, but partnered with little babies that needed me and a desire to help them overcome challenges. 

This time, after more than 13 years of caring for them, it has been so very sad for me .  Today, I nearly cried because I had to wait in line for a name badge.  I've been here a month, they all know me...but it wasn't the name badge.  It was the month.  It was Abby and her swollen belly.  It was me and how desperately I still wish that my girls were alright. 

It was also a better day. 

"These were all commended for their faith, yet none of them received what had been promised, 40 since God had planned something better for us so that only together with us would they be made perfect."   Hebrews 11:39 (niv)