Once we arrived at the hospital a nurse took Pipers blood and we were told to wait for the results. I look back now and realize I wasn’t worried. There was no panic, no thought of anything bad. I can see now that it was the last moment I really had thinking my daughter was normal.
The nurse came and said Pipers bilirubin levels were bordering the danger zone so they wanted to do light therapy. She was admitted to the hospital into a room that I could stay with her in. It’s called the parent room and has a pull out couch, TV, bathroom, sink on one end and Piper in a bassinet at the other end. We were told she would have to stay the night and I stayed with her while my husband went home to stay with my son. She looked so cute wrapped up in the UV blanket.
Things were normal that night and into the next day. Nurses and doctors would come and go and check her out. Nothing happened until about 10:00pm that second night. A nurse came in to check Piper, nothing unusual, but she left and came back 5 minutes later with a doctor. The doctor was checking a monitor, her heartbeat, her temperature. She then turned to me and told me that Piper was not regulating her temperature and that she had something called hypotonia, low muscle tone. They whisked her out to the NICU in what seemed like 5 seconds. I sat in the room alone, quiet and in disbelief. What was going on? Can somebody tell me what is going on?
The doctor came back in and took me around the corner to the NICU. All I see are premature babies lined up and hooked up to monitors and in the middle of it all is my Piper. A mammoth baby compared to all the rest, but hooked up to the same equipment and in an incubator. She was naked, had an IV and all these things hooked up to her. I turned to the doctor and was angry, I asked “WHAT IS THIS FOR? WHAT IS HAPPENING?” She sat me down to explain that due to her low muscle tone she was not eating very much which has led to jaundice. She was not regulating her own temperature due to the jaundice and she was not breathing properly, so she needed to be brought out to the incubator where it was warm and hooked up to oxygen.
It was then that they told me that the jaundice wasn’t the real issue in Pipers case it was the hypotonia (low muscle tone). Hypotonia is a symptom of so many underlying conditions. They were going to take her blood and start testing for infections, metabolic disorders, brain damage and genetic disorders. My world crashed around me. She started talking about Downs Syndrome, Tay Sachs, Cerebral Palsy and other things that I had never heard of. I don’t think I heard her really. I think I went into a trance. This was all thrown at me and I was there alone. I went back to the room and cried. I now had to call my husband and try to explain what just happened to our daughter and I could hardly breathe, let alone talk.
It was then that the questions started and still exist today, 6 months later. I will explain myself more in my next post but Pipers journey is far from over.
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