It’s funny because I was having a conversation yesterday with a friend of mine who is going through some intense stuff too and I realized how the first couple weeks after receiving bad news is very surreal. I remember sitting there and thinking this is all a bad dream. I was waiting to wake up. I even paid attention to certain “normal” goings on in the hospital to find a glitch to prove its a dream to myself. Like, oh that nurse is walking backwards or that doctor had blue eyes before and now they are brown AHA, IT’S A DREAM! Stupid! But I guess thats what helped me handle the difficult situation...
So we continue at the hospital when Piper was admitted to the NICU. For the next three weeks Piper went through test after test to find out why she was so hypotonic. From genetic testing to infections to metabolic testing, we did it all. Nothing came up out of the ordinary. We did an MRI, EEG, ultrasound of her brain and they even gave her a spinal tap to check for meningitis. All normal!
Now this is good but bad news. The doctors checked for the most obvious or common things first. So for example of it was an infection (which is common) we could treat it. The problem was that all her tests were coming back normal and now we would delve into the more uncommon or more severe conditions.
The other issue with Piper was that she could not feed very well. Her suck was weak and uncoordinated which made feeding her almost impossible. I persevered and went to the hospital for 8am every morning and wouldn’t leave until 10pm at night just so I could feed her. The thing was that the nurses would get frustrated feeding her and say she needed to be put on a feeding tube. I refused and said I would stay as long as I can to feed her every three hours and that is just what I did for three weeks. I also pumped every three hours so that she could have as much of my breast milk as possible. I was exhausted! To pump every three hours and then have to sit and feed Piper, which took at least an hour for her to drink an ounce or two was killing me. Combined with the stress of still not knowing what was wrong with Piper and not having any time to recover after the birth...I was not well!
People tried to be supportive and give me kind words of advice but I could’t hear it. I just wanted to be heard. I wanted someone to listen to me complain and cry. If a friend or family member visited I just wanted to talk about something else for a while too. I know people meant well by saying, “I know how you feel” and comparing Pipers health issues to something that happened to them, but I didn’t want to hear it. No one “knew” what I was going through and I didn’t want them to. I wouldn’t wish this on anyone.
So needless to say, because of her decreased weight gain Piper needed to stay in the NICU until she could feed better. I just wanted to take her home and I was determined that I could help her with love and comforting.
Since they could find no reason for Pipers hypotonia and she had stabilized she was finally given permission to come home on November 11. She would continued to be monitored by our pediatrician and continue to be tested.
So that is where we are now. Piper just turned 7 months old and is followed by a neurologist, osteopath, feeding specialist, OT, opthamologist, geneticist and several pediatricians. To this date they cannot find a reason why Piper is hypotonic and this is where I would like to start my journey. The “not knowing” is what I need to write about. My maternity leave is filled with doctors and specialist appointments. Its like night and day from my maternity leave with my son. This is my life and our journey...
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