Please ask me how I do it…a lot…
There seems to be something about having two babies, the same age, that makes those without twins (and those with) curious about the logistics.
Add a trach, a feeding tube, monitors, wires, tubing, and a loud/heavy piece of medical equipment (suction machine), and curiosity grows twofold.
But, honestly, there is no secret.
I’m not perfect, I’m not special, I’m not unique, I don’t have all of the answers.
I get tired (a lot), I (sometimes) feel overwhelmed, I wonder what a “normal” life would be like (every so often).
There are lots of other moms out there like me, who have more children than I do, who parent children with more medical complexity than I do, who don’t have the nursing care that our family has, and they do it.
We all do it.
Because the reality is, that I am just like any other mom, who tries to do the very best that I can. Who wants for my children the same thing that all parents want.
Given the same situation, you would do the same thing.
So, in my non-uniqueness, I have decided to share the story of our family, because I hope that it finds its way to someone who needs it.
I vividly remember, being in the NICU, Audrianna had failed extubation for the second time (meaning that as soon as they took out her breathing tube she was unable to breathe on her own) and I asked the nurses to tell me about trach care for a child.
I was told not to worry about it, that she had a lot of time, she would get bigger and stronger, and that she would do it (breathe)…and that is true…for most NICU babies….
But somewhere in the back of my mind I knew….I knew that Audrianna wouldn’t do it alone and that she would eventually need to have a trach.
And I was ok with that, because I watched her try on her own (eventually 10 times), I watched her chest rise up and down – so hard, so effort-fully, I watched her turn blue, I watched her heart rate plummet, I knew that Audrianna was fighting as hard as she could….to breathe….to do something that you and I take for granted everyday……..
But I needed information, I searched in internet, trying to find information about trachs for children, because I needed to see what it would like like, how to care for her, something to help me find my way.
But I think that most of all, I needed to find the information from another family, not the (fabulous) doctors or (amazing) nurses, but a real family who had been through it. And it was so hard for me to find….
So, here I am, on the other side, hoping that someone else out there, searching the internet for the same information that I did, will find us.
We are a real life family who has been through it. And are doing better than just getting through it. And wouldn’t change a thing. And until Audrianna can just breathe…we’ll continue to be here…..the real life family who just does it without a second thought 🙂