The feeding struggle

A range of emotion comes over me as I see this picture.  I feel nervous, sad, and exhausted.  A child with Prader-Willi syndrome does not eat like a typical baby does.  The low muscle tone wreaks havoc on their tiny bodies, and they work so hard for every single milliliter.  If they spend too much time feeding by mouth (our nurses and therapists told us not to go beyond 30 minutes with Ellie) then they will actually start to burn calories, instead of gain them.  Ellie worked so, so hard, and would be absolutely exhausted after eating. Being an only child, and having her as my first child, I was a nervous wreck to do anything...change her diaper, hold her, and feed her.  It took everything in me to feel confident to feed her, and quite frankly I felt like I did a terrible job of it most of the time.  We had to remember to do so many things:  prop her up because of reflux, hold her head and neck, support her cheeks, support her jaw, spin the bottle, tap the bottle, give her breaks, burp her, make sure her sats didn't drop below 90, massage her cheeks, thicken the milk, and crank her arm (when all else failed...David discovered this one).  I just wanted to cry most of the time, but apparently the baby can pick up on your emotions while feeding, so I had to be strong.  It was mentally and physically exhausting.  When we weren't feeding Ellie, I was pumping and then David would clean everything for the next shift.  Totally exhaustion.

I become mad thinking about this cruel disorder, Prader-Willi syndrome.  How could a child struggle so much to eat in the beginning of their life, and then develop a ravenous, insatiable hunger, what many describe as starvation 24/7?  It is heartbreaking, terrible and as parents, we would do anything to trade places with her.

Ellie made progress.  I can still remember...the doctors and nurses set a goal of 42 mLs every feeding (3 hours) for her.  She could barely take 5 mLs when we started, and by the end of 26 days in the NICU, she was taking 42 mLs every feeding.  It was nerve wracking going home and to the pediatrician, because what if she didn't reach her 42 mL goal when we got home?  What if she lost weight?  Would we be back in the hospital and headed for surgery?  Ellie showed me through all this how strong, resilient, and brave she is...it also shows the grace and goodness of God.  David and I fervently prayed throughout this time, and God took care of Ellie in ways too numerous to count.  I prayed He would take away her PWS.  I prayed that the geneticists got the diagnosis wrong.  I prayed for a miracle.  When I stopped trying to pray for God to take away things, and make things "normal," I still prayed for a miracle, and I prayed for God's will to be done in Ellie's life.  His will is clearly evident each day we spend with her.  She is perfect, and exactly who she was intended to be.  She is a miracle.

And what was the feeding struggle, became the feeding triumphs.