Over the years the beeping and alarms have become a source of distress and anxiety for me. The pulse ox blaring in the middle of the night to inform me that Liam's oxygen levels plummeted because he forgot to breathe in his sleep (he has sleep apnea) or because his lungs are comming down with infection and aren't working as well as they should. The feeding pump with it's constant alarms saying "flow error" yet there being no blockage in the line at all.
The last one has become such a source for my anxiety that it's probably raised my blood pressure and set me further back in my PTSD/depression/anxiety recovery. It had gotten so bad that I would sit there after hooking Liam up to the feeding up at night and nervously wait for the alarms to sound because the questions was "if" they would. It was "when" they would.
At the end of our journey with the Joey pump, and Liam's gtube issues last month, my anxiety had gotten so bad that I would just sit there shaking and crying EVERYTIME the pump alarm went off. If the alarms would go off while I was sleeping, you would have thought bombs were being dropped on my house. It's not a metaphor, this is how it all felt.
It affected my PTSD so horribly that I started having nightmares again about NICU and Liam's birth. I couldn't hardly sleep and started having flash backs again. Going out into public places became an issue again as well. If there were more than 2 people within a 20 foot radius of myself, I just had to escape. I would walk to a different part of the store and if it continued to happen, I would just leave.
I never imagined a beeping sound could hold so much power over someone. Never thought anything would effect me the way the alarms do. And even though it's been 2 weeks since we got Liam's new feeding pump (the infinity) and he had his gtube surgically fixed, I am still dealing with the effect of the beeps.
The slightest beep will wake me up from a dead sleep disoriented and freaked out. I have issues listening to even the beeps of items being scanned at the store. And all I really know is that this is my beeping life thanks to CDH.
The beeps aren't going to go away. They're effect on my won't stop with a snap of the fingers. Even tonight being woke up in the middle of the night by Liam's machines was an extremely stressful event. What they represent is an important part of our lives that we can't just turn them off. So I must endure the mental and sometimes physical pain these beeps cause me because it's for the greater good. That act doesn't make me anything special, it's just means I'm a mom who loves her baby boy more than herself and will always put him ( and her daughter) before she does herself.
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