Small Victories

This picture has such significance to our time in the NICU. Immediately upon looking at it, I feel relieved and think 42 mLs!!! The memories surrounding this picture are bittersweet  because we captured the sheer joy of Ellie meeting her goal feeds and drinking her bottle, but we also captured her utter exhaustion and struggle.

The joy was like nothing we've ever experienced.  We were so proud of her, and so relieved that we finally felt like something was working in our favor.  At this point, our doctors had taken so much blood from Ellie to run all sorts of tests, she had undergone a cranial MRI, abdominal ultrasounds, eye exams, and doctors we not really telling us what they suspected...and that made us extremely nervous.  It turned out, Ellie really stumped them, and they didn't know what might be going on with her...they had lots of balls in the air of possible diagnoses, and they consulted with numerous pediatric specialists.  Spartanburg Regional treated us with the utmost respect and care, and we couldn't be more thankful for the doctors and nurses...many of whom we still keep in touch with!  

So, the day she drank her whole bottle, we celebrated, and were so happy.  We stopped at Krispy Kreme on the way home from the hospital for doughnuts (I later felt so unbelievably guilty for doing that upon receiving the diagnosis of PWS, and so many emotions come racing back anytime I drive by Krispy Kreme).

But, I also look at this picture, and am filled with sadness.  My precious baby girl looks so, so tired and she just drank 42 mLs (just under 2 ounces) of milk.  She used every ounce of energy she had to do it, and it kills me.  We would spend 30 minutes working with her, and I can remember, David and I would both be sweating by the time it was over.  We were nervous and scared, and just wanted our baby home.  There were ups and downs, good days, bad days, good nights, bad nights.  She was exhausted, but she kept working, kept pushing, and ultimately showed us, "Mom, Dad, I got this!" And that wouldn't be the first, or the last time she has done that.  

Feeding, drinking, nursing...it's critical for a babies survival and development.  We have learned more than we ever thought possible about it, and more than we ever wanted to know, honestly.  Ultimately, we are thankful the knowledge we have gained, and the people that were placed in our lives to help us on this journey to help our daughter safely get the nutrition her body needed.  In the midst of trials and tribulation, we must celebrate the small victories, because they will ultimately sustain you when moments become tough again.  

The small victory