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!

Obstacles

One year ago at the Junior League's I AM Strong I shared with then President Erin Leifker and good friend Katie Rathje, among many others, the happy news that I was pregnant. What a year it's been. 

Today, I participated in that same race, with my "dirty girls" at Ruhl&Ruhl Realtors. It was tough, muddy, dirty and fun. It tested my mental and physical abilities but I finished it. After tromping through a creek and using a rope to climb out of the mud I caught a glimpse of what I thought was Pete. To my surprise and delight, there was my miracle baby with Daddy and Brother waiting at the finish line. You couldn't wipe the muddy smile off my face after seeing them. 

By far the hardest obstacle was the monkey bars. I was very close to chickening out and skipping it altogether. Finally after hearing 'you can do it' about a half dozen times, I worked up the courage to try. You make think, monkey bars = no big deal. But these were about 16 bars high in the air, with 4 feet of muddy water underneath and lots of other women watching. I think I was mostly afraid of trying and failing in front of others. I am proud to say I did it. I was on a high the rest of the race. 

It's funny to me that an obstacle like this would be that big of a deal after the year we've had. Sometimes it actually feels like many years since Alexander was born and it's only been nearly nine months. He's doing so well and his still very serious lung disease and treatments that go with it, don't seem so crippling. I think we've just grown accustom to lugging oxygen tanks and doing breathing treatments. Or maybe we just are blinded by his infectious giggle and his smile that brightens a room.

 

Alexander is on a pretty good schedule now and while we still worry (or I still worry) about his eating, he's doing well increasing his average intake and fattening up nicely. He started rolling over from his back to his stomach so we've walked into the room a couple times surprised by his new mobility. He LOVES watching his brother and babbles to him incessantly. He's also started doing toot noises, which just makes us all laugh out loud.

Andrew continues to amuse, especially with his obcession with Uncle Tim Stop and happy go lucky persona. Just today, while waiting in the car for Daddy, Alexander was crying. Andrew says, "My brother wants to hear Still My Baby." (a newer song by his favorite Tim Stop). Thanks for translating Andrew! 

At least we know that no matter the obstacle, monkey bars or those far greater, we will power through it as a family!

Special shout out to my parents and Pete's parents for spending the weekend with Alexander and Andrew so we could head north for the Beason's wedding! We had a blast and enjoyed a weekend away together with friends!

Measuring Up

From the day Alexander was born everything in his life was measured. His 1cc of milk (which is basically a drop) that he was able to take after a couple days after birth. His amount of oxygen and pressure from the ventilator. His medicines. His grams (I had to have a calculator for this one to convert to pounds). His fluids. His diapers - yes they weighed these after each changing to ensure the output was good. Even the day of life he was on.

We continue these measurements. We track how much he eats and when he eats. When he naps. His dose of medicine and breathing treatments. And, a big one, his weight. We are happy to report that we have a boy that's literally measuring up. At his University check up this week he weighed in at a hefty 15 lbs 5 oz. This is in the 50th percentile for his adjusted age of 4.5 months (based off his due date) and not yet on the charts for his actual age of 8 months - but he's very close. 

He's also on track for his adjusted milestones. He's grabbing toys, holding his head up well and started rolling over from tummy to back. 

But more than any of that, Alexander is just simply a joy to be around. He's ticklish and giggles up a storm. He doesn't stop talking and adores watching his brother play. He's eating pretty good and sleeping amazing. We couldn't feel more blessed to have him in our lives. 

At our high risk follow up appointment they were thrilled with his progress. Dr. Klein said yet again that he is just amazed and that you would never know how long he fought for his life. He said once Alexander ditched the lovely cannula no one will ever know he was a preemie - especially due to his size and head shape (doctors and nurses love talking about head shape by the way). We were able to reduce his oxygen to .5 liters so we are getting close. Our hope is to be able to decrease again in two months and then be off around his first birthday!!

We got to see great friends who had a follow up appointment the same day. We happened to meet the Mills family in the NICU but I know it was the beginning of a life long friendship. Karin has been there for me like no other person could during our days in the NICU. I look forward to continue to get Alexander and Frances together!

Andrew continues to keep us on our heels and basically laughing at all times. When I say he is obsessed with Tim Stop and John Mayer, that would be an understatement. He knows the names of all the songs so he can make his requests and full out jams with his fake guitar. He also loves to play every sport but especially golf and tennis. 

We've gotten out of the house a lot more - enjoying time with family and local summer hot spots, like the River Bandits game and 4th of July Parade. We also were especially blessed to be witness to Pete's Aunt Sara's wedding to her long-time partner, Pam. Andrew was the "flower boy" and we look forward to the future when we can explain how special this day really was to us. Plus, Pete's brothers and sisters were all in town, many for the week. 

We also traveled home to Ankeny for a friend's wedding and got to see most of the Eckhardt clan, who got to love on Andrew and Alexander. Surprisingly it was an easy car ride - Alex slept the entire way and Andrew read books, listened to John Mayer and watched videos on my phone. It was great to finally introduce Alexander to most of my family.

 

I think I had really become obsessed with Alexander's measurements. Instead, I lost sight of what I should be focusing on - measuring life by all these moments captured above. If we are measuring, our life is really off the charts!