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!

A Memorable Day

Today was a memorable day for our family.

We had Alexander's follow up, high risk appointment at the University of Iowa. There we learned Alexander is developing perfectly (just as we thought!), even ahead of his adjusted age. I had been concerned about his eating - he eats very little from his bottle but loves food - but he is developing right along his growth curve. He is now on the charts for his weight and head size - in the 10th percentile for his actual age. His height is catching up. We think he's a tall one for our family!

And then it happened. The doctors came in and said he was doing great on his oxygen test. Then they said words I didn't imagine happening so soon - "we think he can try coming off the oxygen." I had to do a double take.

Just before the doctors came in to share that news, we received the message that Pete's aunt, Katie Lynn, had passed. She had been fighting kidney cancer, which had spread to her entire body. She left her husband, her daughter and son, their spouses, and four grandchildren. She made an impact on many lives. We've spent many months praying for her and her family. I believe she helped answer one of our prayers today. 

We are still adjusting to having a cord-free, wireless baby. Pete's smile lit up the room as he pulled the oxygen cords from Alexander's room and rolled them up into our hall closet. We walk around the house with Alex just because we can. 

Tonight, we celebrate a step forward for Alexander as well as a life we will never forget.

The Day That Started It All

One year ago, our lives were changed forever. 

It was the day we realized what true fear was, what it's like to see your child in pain, fighting to survive.

It was the day we were taught true love, how special the bond is with your spouse.

It was the day we learned what true strength was, how to pull it together when all we wanted to do was fall apart. 

It was the day we learned to have peace, to take each moment, each breath, one day at a time and to be thankful for the time we have. 

It was one of the most rewarding, blessed, challenging, happy days of my life.

It was Alexander's birthday.

I've had lots of different emotions remembering the days leading up to and the day of Alexander's birth. It was a very scary time, yet still so hopeful and positive. November 17th is World Prematurity Day and while I laid in my hospital room, KCRG kept playing a story of parents who lost their preemie and another preemie who had grown up healthy after initial support from the University of Iowa. Instead of making me scared that day, it gave me hope. 

When you look at him now, it's hard to remember everything he went through. But I suppose that's the point - to see him as he is now - a happy, little man, who wants to keep up with his older brother and lights up a room with his smile. 

The rollar coster of the past year has changed us. It's made us appreciate one another in ways I can't communicate in writing. It's made us not sweat the small stuff (yes, it's all small stuff) - and when we do sweat it, we look at Alexander for a reminder. It's made me smile when I get to hear complaints from Andrew that Alexander is playing with his toys. It's made us part of the club no parent wants in - the NICU Parent Club. But those Mom's inspired me day after day and continue to do so - especially you Karin and Angel! All of these positive changes wouldn't have happened without Alexander and his surprise birth. 

We are the lucky ones - parents that got to bring a baby home from the NICU. I know many that didn't get to do that. Every night I pray that all mothers get to take their baby home, healthy. This is why our family supports the March of Dimes and is excited to announce that Pete and I are the chairs for the 2015 Quad Cities March for Babies. More to come on that in the future but save the date: http://www.marchofdimes.org/iowa/events/10282_3136363335.html! 

So today, on World Prematurity Day, better known to us as Alexander's birthday, take time to think of those who have lost babies, had babies born unhealthy or had babies born too soon. Pray for all those families and donate to the March of Dimes. Remember our Alexander the Great, who continues to amaze us each and every day and brings such joy to our lives. 

Happy Birthday Alexander!!

The Update

I completely appreciate how friends and even those we don't know still ask how Alexander is doing - even when they are teasing that I haven't updated the blog. The truth is no news is good news. Actually, Alexander is doing so well that we just haven't had time to get it down on paper (or the computer). We have had a few big milestones and so here is my big update!

First off, Alexander is on the move. Literally, he is crawling all over the place. He can get to anything - rather quickly - and is getting into all of Andrew's toys. It's so much fun to watch him play and experience movement for the first time. It's also fun to watch Andrew freak out when Alexander grabs his golf clubs or electric guitar. Brothers are the best!

Secondly, Alex had his eye check up at the U two weeks ago. He had a full eye exam, even with dilation, and we are thrilled to report that his doctors said his eyes appear perfect! He will have another exam after another year and then should be good. His doctor did say that it's common for preemie's to have cross eyes and sight problems but that so far it appears Alexander has dodged that bullet.

We celebrated our first Halloween as a family of four - trick or treating was the best with Andrew. He understood knocking on doors and even said 'trick or treat' as well as 'thank you'. We made it to five houses before he said he wanted to go home 'to eat his candy'.

For those of you that know me well, you know that I LOVE Halloween and this year did not disappoint - first place in our work contest for Studio 54 and just A LOT of fun at the Eisenlauer's annual Halloween party as Mugatu and Zoolander. What fun! 

We were able to go to Ankeny for a night to see my family and play with the cousins. It was too short a visit but very fun. We also had a special visit from my dear friend Amanda and her daughter Kennedy (who also arrived a little early). 

And this week, we had another addition to the Stopulos family - James Patrick Stopulos was born to Joe and Kristin, with big sister Rachel. When we told Andrew the following morning I said that James and Alexander would be best friends and Andrew replied "we will all be best friends." Hurray for cousins!

We are also working hard on potty training - so you see a lot of this at our house. 

More to come later this month as we celebrate Alexander's first birthday and have another follow up at the U. Life couldn't be better!

158 days

Alexander spent 158 days in the Neonatal Intensive Care Unit at the University of Iowa in Iowa City. It was 62.5 miles each way. It took approximately 58 minutes to get there. We made 81 trips. We drove a total of 10,125 miles. We spent over 157 hours in the car. Sometimes statistics really put it in perspective on how far we've come these past 10.5 months. 

As of Monday, we hit another important milestone - Alexander has been home more days than he was in the hospital. This was a date I marked on my calendar. A date I literally counted the days until. To me, this date helps further ourselves from the hell (and peace) that is the NICU. 

Much has happened in these 158 days at home. Most recently Alexander has been on the move. He rolls around the room and will even get up on his knees like he's going to take off - he just hasn't quite figured out the forward motion yet. We are working on sitting up - and our doctors have given us some tips to help him out. 

We had Alexander's high risk follow up appointment at the 'U' today and his doctors are thrilled. They couldn't believe how well he was moving about and how he was grabbing toys. They said he's behaving just like a baby his adjusted age (almost 7 months now!)! He was able to be weaned from his oxygen down to .5 liters again, so we hope the extra time on .75 liters has helped him and it will stick this time. We will be closely monitoring him and hope he's ready! He also loves baby food - especially bananas and sweet potatoes. He eats like a little bird with his mouth wide open and will even cry for more. 

We were very blessed to find a wonderful nanny, Jaclyn, so both boys will be home, helping to reduce our risks for illness. It was a difficult decision as we loved Andrew's daycare and Alexander's nurses, but it's our goal to keep them both as healthy as possible as any sort of cold or illness could be devastating for Alexander. His lungs are very weak and still developing so a cold would go directly to his lungs and could be a potential setback or even land us back in the hospital with respitory failure. We will be very cautious this winter, especially with everything already going around, when we plan to be with family or friends. 

 

Life is busy and fun. We celebrated Mary Fran's 60th birthday with a surprise party at our home. It was great fun and all of Pete's brothers and sisters made it home. Pete and I also went to Vegas (my first time) for work and some one-on-one time. What a great time in sin city!!

While we have surpassed our 158 days at home, this is still just the beginning of Alexander's journey. And we can't wait to see what he does from here!

Getting Old

We talk a lot about dreams at our house. Every night before Andrew goes to bed we ask him what he's going to dream about that night. Most of the time it's race cars, ice cream or tractors, but about a week before my 32nd birthday he said that he wanted to dream about police cars...with sirens. And then he added, "I wanna get old so I can ride in one."

Dreaming about being a rock star. 

First off, I had to laugh, because if he's anything like his parents, he may have that opportunity. And secondly, it really made me think how fast time is going. The other night at dinner I was watching Andrew shove spoonfuls of peas into his mouth. It seems like only yesterday that he was picking up one pea at a time to try to get in his mouth. And only a day before that when WE were shoving spoonfuls of carefully pureed peas into his mouth. Maybe I'm just being sentimental with turning another year older and reflecting on the past year, but time is really speeding up, instead of slowing down. 

In three days, Alexander will be 10 months old (6.5 months adjusted). He's rolling all over the place, trying to crawl, working hard to sit up and starting to eat those carefully pureed foods (just bananas and avocado so far but he's doing great!). He's also had 3 teeth break through in the last couple days - which hasn't been fun for our little guy. We don't go back to the U until the end of the month but we believe he's developing just great. He's got the best attitude and you will rarely not see a smile on his face. 

Since life isn't slowing down, we did have to slow some things down for Alexander. He wasn't eating very well over the past three weeks and after trying everything else, we worked with our doctors and nurses to turn his oxygen back up to .75 liters. I have struggled with this and am working very hard to not see this as a set back. Instead, sometimes in life, we have to take a step back to push forward and this is the case for Alexander. A few days after we turned up the oxygen he started eating much better and has started to gain weight again. 

It may just take Alexander a little bit longer than expected - we just have to remember he is the boss and he sets the rules. It does make me remember to slow down and enjoy each day, instead of trying to rush to the day he's off of oxygen - that could be very far off and I don't want to miss the ride. So we will work to slow life down, take it easy and not rush to get older any time soon!