Many of our families have experienced lengthy stays in the NICU after their superhero were born. Here is one mom’s account and experience there. We love our special needs families and we love our community!
It is NICU awareness month and it has been on my mind a lot the past few nights. It’s extremely overwhelming feelings even four years later.
It was the absolute horror of having my baby taken from my arms to go to the NICU, thinking he would be back soon.
It was having to go 12 hours without seeing him because of my blood transfusions.
It was getting phone calls about intubations.
It was being at the hospital before rounds and not leaving until I knew his night nurse.
It was the frantic feeling of coming in the next day and having no idea what new medicine he would be on, where his IV would be, what his ventilator settings would be, what he would look like with the swelling.
It was the horrid feeling of not knowing if he would make it through the night.
It was the devastating feeling of leaving every day without my baby in my arms.
It was pumping in an empty nursery every night so I could provide Easton with some kind of nutrition.
It was barely being able to touch him for the first 12 days while he was on the ventilator.
It was watching him breathe over the machine and look around, a feeling that we were both helpless.
But, we also celebrated every little milestone. We had nurses turn into lifelong friends. I think the hardest part for us, was Easton enduring all of that and us thinking the worst was over, only for him to be dealt a horrible diagnosis. The only positive I can find out of that is that we were already a strong family and it gave us some medical background to carry with us to the future.
If I could give anyone one piece of advice it would be to always ask questions, be involved in your child’s care however you can and talk/sing to them even on the ventilator, they can hear you.
Easton’s mom (Hunter Syndrome)