The Truth About Preemies

The story of a preemie does not end when they go home from the hospital. 

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. 

Changes

It's been three months since my last post. Since then, we've had lots of changes.

We are very busy chasing, that's right, chasing Alexander around the house. He is a very speedy crawler and just started taking steps. He will also pull himself along furniture and windows. Now he will take two to three steps, sometimes even more. We have struggled with continued weight gain but hope his new high fat diet will help!

We have called in even more miracles and Alexander stayed healthy through the holidays. I caught what I think was the flu, which turned into sinus infection and bronchitis. It was tough because I had to wear a mask at all times when I was home and tried to avoid taking care of Alexander as much as I could. We also avoided a lot of sick family over the holidays. My parents were unable to come to our home due to illness and we had to stay home from most of the Christmas celebrations to keep our distance from those who were sick. It was hard but we were just thankful to be home. We continue to be in isolation until June 1. That will be the awesome day when we are able to take Alexander into public places and treat him like an average baby - despite us knowing that he will never be average! 

It's so much fun to see Andrew and Alexander play together. I never thought I would have to say, "We don't body slam our brother!" or "We don't head butt our brother." but these phrases seem to be common place at our home. And I'm saying it to both boys! They are going to be a feisty bunch!

Andrew is hilarious as always, with the funniest comments ever. He seems to be non-stop and while he often is pushing the envelope, he's a blast. Andrew and I recently traveled to my friend Susie's home near Chicago to visit. Her Lucas is 1 month younger than Andrew - despite the fact that they were due the same day! Lucas is soon to be a big brother as well! We had so much fun!

There have been some BIG changes with my career. Right before Christmas I decided it was time to finally pursue one of my dreams that would give me more time with my family - becoming a Realtor. I officially resigned from my position as Director of Marketing & Public Relations for Ruhl&Ruhl Realtors and finished on Friday. I've taken all of my classes and passed my test! Just waiting on my background check to come through and I'll be official! I start work with Pete tomorrow at Ruhl&Ruhl Realtors - just a day before Alexander's "one year" adjusted birthday. We are teaming up and will be able to help each other as we move forward into this exciting journey. I'm very excited and can't wait to get started!

And, still more... Pete and I are chairing the March of Dimes March for Babies in the Quad Cities. We are so happy to be giving back to an organization so close to our hearts. The walk is April 25 on the Rock Island Arsenal. To join us to walk or donate, please visit www.marchforbabies.org/alexstopulos. We would love to have you all there to help us support this great cause!

With all this change in our lives, I've renewed my commitment to keep this blog updated, so expect to check back often!