We had made it. It was a month of the saddest, most confusing, exhausting, love filled days I could ever had imagined and it was over and we were heading home, just in time for Mothers’ Day. But I wouldn’t have made it through without the support of friends, family, nurses, and doctors. The outside support was outstanding and what got me through day to day, especially those days where I was away from J & E and all I had were the nurses, our amazing Ped. at Children’s, and Skype.
Just recently I’ve been hearing a lot of complaints and regrets about Doctors and nurses in the early days of many CHARGErs being all doom and gloom and worst case scenario. I can honestly say that couldn’t be any further from the truth in our experience. It has made me count my blessings in those early days even more. Everyone was as positive as they could be, whether that was trying to counteract my sadness and doom & gloom or not I’ll never know. But either way, I’m happy they tried to give me hope when I couldn’t see beyond what they were telling me.
Not once did someone tell me my child was going to be blind. Not once did someone say your son is going to be unable to hear your voice and voices of everyone else who loves him. Not once did someone tell me that N wouldn’t walk or talk. Not once did I hear that he would have a poor quality of life. Not once did someone tell me he wouldn’t be anything less than extraordinary. I wish this was true for everyone else’s experiences.
All the Doctors and Specialists kept saying was “we won’t know until he can tell/show us” but follow your instincts. If you think he can hear, he probably can. If you think he can see you, he probably is. If you think he’ll be able to sit/walk, he probably will. He is going to be a special boy surrounded by love and support and that will get him to his maximum potential.
At the time all I could think of was the negativity behind this and the fact that this meant my newest son wasn’t going to be able to do things like I expected. I focussed on the “probably’s” and felt sad. At the time, I couldn’t feel anything but sad. But I had an amazing Paediatrician who came to check on how I was doing and did I have any questions. She kept reassuring me that everything would be ok and even though this was new to me that I knew my son better than any specialist or research paper.
When she called to tell us that his ABR showed absolutely no wave forms, you could hear the concern and empathy in her voice. She was on her day off, home with her children but she tracked down the report and called us any way right at that moment. We were no longer her patient since we were discharged and had a local Paed. take over, but she immediately said she’d set up the tests to figure out why he showed no response. She believed in us that when we said we expected him to have substantial hearing loss but the fact that he had no hearing caught us off guard. We told her how we were convinced he heard my Tim Horton’s bag scrumpling up to go into the garbage before we were discharged, how he would open his eyes whenever E would screech and scream and be a regular almost-2-year-old, and just the night before J was playing his guitar and Noah would kick and kick his little legs & when the music stopped, his feet stopped. We knew in our heart of hearts, there was something there and the test couldn’t have been right. And she believed us and trusted our instinct over the medical reports.
Then there were the nurses. We had so many great nurses. Sure we had a few duds, but the great outweighed the not-so-good. The nurses at Children’s couldn’t have been any better. They were there during my darkest days and made me feel as comfortable as I could on those crappy window beds while my newborn son was undergoing test after test after test.
I will be eternally grateful. (Even more so when I hear of other’s experiences, especially in the early days)
I couldn’t wrote a post about the Nurses and Doctors at Children’s without talking about the amazing NICU nurses I had before being transferred. Of course, there were at least 2 that I could have done without; 1 was too inexperienced and the other was just a negative Nancy but there is always a few so-called bad apples. I’ll never forget the day N was getting suited up to go on his first plane ride to Calgary. I was a wreck but holding myself together. As soon as the team came I became a ball of nerves, I knew what was coming. I was leaving the hospital once again without my baby and this time he was going to be hours away and it would take at least 3 hours for me to get to him. He was going to be all alone in a new place with people he didn’t know. It was finally time to leave and I crumbled. I was a hot mess and the only way I stayed on my feet was thanks to one nurse. She gave me a hug & cried right along with me. I’ll never forget walking out through the NICU doors without Noah and knowing he wasn’t there and not knowing what the issue was. Then, to have the phone ring a month after we were home to hear the all too familiar voice checking up on me and offering to take care of Noah. This nurse found 4 others willing to give us respite and cuddle our little man. I was in awe.
I can’t imagine the route my life would have taken if I didn’t have the nurses and Doctors that I did. I’ll be forever grateful for their optimism and hope filled conversations during my darkest hours. I wish more people shared my experience instead of being given negativity, despair, and cannots.