The truth is, the hospital stay can be a nightmare, but sometimes once your preemie gets home it can feel like a reoccuring bad dream.
I recognize we were lucky to bring Alexander home. That he's here with us is a miracle in and of itself. We are fortunate he is off oxygen and that his only doctor appointments at this point are follow up high risk appointments. Of course he has breathing treatments twice a day and a couple therapy appointments each month but he's almost golden - now considered almost "average," (although not to us!).
I know we are lucky and blessed, but this is a very lonely path.
Because of Alexander's weak lungs he can get sick very easily. Most babies with BPD (bronchopulmonary dysplasia, sometimes called chronic lung disease) can end up back in the hospital with respiratory failure after catching just a common cold. We have made the decision to obey our doctors orders and keep Alexander on isolation - pretty much putting our family on isolation as well.
What this means is we have never gone to church as a family. We have never attended the weekly brunch at Village Inn as a family. We spent most of Christmas at home, alone. We don't have play dates. We don't go to restaurants. We don't see our friends with children. We don't have people over who have children or who have been sick. We can't run errands with Alexander - no grocery store, Walgreens or Sam's Club. Pretty much someone has to be at home with Alexander at all times - he can only leave the house for doctors appointments and Grandma/Grandpa's homes (when people are healthy).
I'm not sharing this for sympathy, or worse pity. I'm sharing to help educate. To help start a dialog of the effect of a premature birth on an entire family. How scary it is every day to wonder if your baby is going to get sick and end up back in the hospital. How lonely it is to not be able to go do the things you want to do and see the people you want to see with your family. How normally when you bring your baby home for the first time you want every one to come see him, but with a preemie you stand guard blocking people and germs with all the power you have.
I've definitely shed many tears about the things we can't do. I've been upset, I've said, "it's not fair," and I've even been angry. I've come close to calling this a bout of depression. I feel very disconnected - even with working outside the home. I know my relationships have suffered.
But I've decided it is time to be done. I want to be an advocate, instead of playing the victim card. This is the first step - to share my story. An insider perspective, if you will, on what it's like to be a mother of a micro-preemie.
June 1 is our day given by Alexander's doctors - the day that Alexander can be released from isolation. The day that Alexander can be treated "normal" and go into public like a "normal" one year old.
What we've done has worked. Alexander has stayed healthy (minus a runny nose and cough) through the winter - only two more months to go until flu season is complete...for this season. Unfortunately, this won't be the last time to be scared or nervous about illness. This June 1st date will be hard for me because it doesn't erase how we've spent the past six months and the sacrifices we've made.
I guess I just stick with the theme... short-term pain for long-term gain. And know that it was worth it.
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