Wires & Tubes

Oh, to see Ellie like this makes me sad and grateful.  Sad because she looks so sick. Sad because we didn't get the typical post birth experience.  But, truly grateful that modern medicine is able to help babies grow and become stronger in a Neonatal Intensive Care Unit (NICU).  Grateful because Ellie was exactly where she needed to be in that moment.  She needed all those wires, and that tube.

Those wires monitored her heart, and her oxygen saturation levels, or "sats" as as we came to know them.  Normal blood oxygen levels are considered 95-100 percent.  If the levels are below 90 percent they are considered low and can cause respiratory distress, breathlessness, and increased rate of breathing.  If the levels are below 80 percent, it can compromise organ functions and should be addressed right away.  Continued low levels can lead to respiratory or cardiac arrest, and oxygen will be used to aid an individual.  David and I watched those monitors like hawks, and I would panic anytime they alarmed.  Ellie's "sats" would hover anywhere from 90-100 most of the time.  When we began feeding by mouth, I remember them at 79-82, and that was NOT good.  We would immediately have to stop if that happened because her little body was working too hard, and her organs could have been compromised...  

Thus the need for the "ng" (nasogastric) tube.  This was a tube inserted through her nose, past her throat and into her stomach.  The ng tube gave her nutrition without her body having to work so hard (due to her low muscle tone, this was the challenge).  It is amazing how little I knew about "muscle tone" in infants and people, before Ellie.  It.is.everything.  I will never take feeding a baby for granted anymore, because now I know how hard it is, and what a miracle it is.  Babies with low muscle tone struggle and work harder to do the simplest of things, like drink a bottle or hold their head up.  Many children with PWS must come home with an ng tube or a gtube (they have to have surgery to place this, and it aids them in getting the nutrition they need, while working on feeding by mouth.

David and I vowed that we would do everything possible for Ellie not to have surgery, or come home with an ng tube.  Once we made that vow, our strict, dedicated, methodical way of feeding Ellie began.  I look back and remember how incredibly hard and exhausting that was, but then I could kick myself for thinking that.  Ellie works hard every single day of her life, and always will.  I have two thoughts about our ng tube experience...not wanting to come home with one made us all work harder, and learn to capitalize on Ellie's feedings strengths, but I absolutely, positively think there is nothing wrong with coming home with an ng tube or a g tube.  Both are amazingly strong ways to help your baby, and I will forever be thankful for those wires and tubes.