Thursday, November 13, 2014

Hope.

There's really nothing that can hurt your heart like seeing your baby in pain.  It breaks you in two and leaves you feeling an unimaginable amount of helpless.  After 7 appointments to the doctor in two weeks you'd think we would have answers.  
But you have stumped not just your mommy but three pediatricians as well.  We are fairly certain you have a dairy intolerance.  So as of two Sunday's ago,  Nov. 2 I began cutting ALL dairy out of my diet and was directed to pump and freeze my milk while feeding you Nutramigen formula, one of the few formulas without dairy protein in it.  Pumping and bottle feeding feels as close to feeding twins as I ever want to get.  Not nursing you at all was a bit emotional for both of us.  (maybe more me than you).  Which was all fine and dandy because the thought of you being better was so delightful it made it worth it.  We were hopeful.
Nutramigen gave us the slightest improvement in the amount of crying you did during the day but it was not the answer as we continued to see crying associated with gagging and hiccups.  So on Friday Nov. 7 we were told we could reintroduce breast milk and started you back on Zantac for possible reflux issues, and we were hopeful.  Friday night = muy miserable.  Heart breaking and tear filled by us both. 

Then came Saturday.
All of a sudden a new baby appeared.  Out of nowhere you were alert and happy, awake and not crying!?  We naively thought we had turned a corner.  Then Sunday reared it's ugly head our way and bam.....right back to it.   This presented even more of a mystery both to us and our pediatricians as to what might be causing your pain.  This week you began a compounded dose of Prilosec hoping you were just not responding well to the Zantac and needing a different drug.  Again, I let hope creep in....

Each day this week I feel I've watched you get worse.  The screams have been here more than the crying. As for the awake and calm times.....a 10 minute stretch feels like heaven.  You continue to sleep very little during the day 2-3 hrs has been as good as it gets, and we work oh so hard to get there.  You are calmed by the sound of a vaccum, and so we try it often leaving us with the cleanest carpet in town.  :)  
Today our doctors consulted with a GI specialist at UK.  By his recommendation we are to start an elimination diet, taking all the high allergen foods away from your system including wheat, soy, dairy, eggs, fish/shellfish, and nuts.  We are also having appointments set up with an allergist here in town to consult us on further reccomendations.  It's all not enough.  Not a good enough answer.  So for the first time on this journey, I'm not feeling hopeful with our solutions.  
 I plan to take our advice one step further with the Dr. Sears Total Elimination Diet.  For the next two weeks we will eat potatoes, range fed turkey and lamb, pears, pear juice, green/yellow squash, and rice.  I consider myself a bit of a foodie so to say this is going to be hard is an understatement, but Puhhhhleaze nothing can be harder than watching your newborn baby girl in this much pain.
Those fleeting moments with you on our one good day were so refreshing and wonderful and I'm craving the day when we get to see that from you again.  I have spent so much time in prayer the last month I fee like I should be wearing a habit.  Through this journey we have felt lots of love for you as people have reached out to give us advice, listen, and offer support, but most of all prayer.  Though God has not yet healed you into the happy healthy baby I want you to be I know he is here.  I have felt broken, lost, and knocked down many times a day yet have somehow been able to rely on him and hear him say let me be your strength.  So for those prayers that have been said I am so thankful.  I can say without question I would be 7 states of depressed right now if he weren't carrying us through it all.  

We all love you so dearly sweet girl, and are anxiously awaiting the days when we can all laugh, smile, and stare into your eyes as a family.  Happy 7 weeks to you darling, may the next 7 be super bright and cheery and filled with giggles from your growing belly rolls.  Get well soon my angel.  

Love, 
Mommy

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