After eight, extremely long months in the Neonatal Intensive Care Unit, Noah came home.
While we were ready to have him home (and end the back and forth drive to the hospital) the thought of caring for a medically fragile baby during cold and flu season instantly sent my body into a panic.
Medically fragile kids come in many shapes and sizes.
Noah’s fragility was easy to spot; he had a tracheostomy tube coming out of his neck and more tubing connected to a ventilator. We rarely took him out of the house, but when we did he was accompanied by even more equipment, a nurse and at least one family member.
His appearance made people nervous, which also kept him safe. I wasn’t fighting off family or the random church lady trying to snuggle him or smother him in kisses.
I wasn’t offended by their fear, the tubing was his life support. It was natural to be nervous about it.
People being nervous was incredibly important for Noah’s survival.
Not only did germs have easy, constant access to his body through the large hole in his neck and the long tubing we used to access his lungs, but his gut was also affected due to his extreme prematurity. His immune system was not firing on all cylinders, which made fighting off common crud very difficult.
Germs were a given. While Noah rarely left his room, the rest of us had to (although I know full weeks went by when I didn’t step foot outside of the house.) We had nurses in the house constantly and Chloe was in the first grade – just imagine those germs!
Hand washing was a MUST for everyone. We even went as far as making Chloe change her clothes when she got home from school.
The small bubble of our world revolved around keeping Noah well and germs out.
Guess what, our efforts worked. Over a few years, Noah got stronger, his airway grew more stable and we adjusted to life with a medically fragile kid.
We added essential oils to our lives, let Chloe relax a bit on changing her clothes all the time and even took Noah out into the world. His gut healed, his immune system strengthened and I learned natural ways to care for him when he does get sick.
I’m not scared all of the time now.
He’s no longer medically fragile…
but if you cough near him I will definitely be throwing you some shade.
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