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!

You'd Never Know

It's been 55 days since Alexander came home from the NICU. Life has changed drastically since my post a month ago. It's been busy and wonderful. Not a day goes by that I don't relish how far we have come and how life, while not what I ever imagined, is perfect.

When we were at the 'U' last month, one of the things Dr. Klein said stuck in my mind. "You'd never know he fought for his life for so many weeks." While I remember those weeks of not knowing what each day was going to bring - when Pete's ring fit around Alexander's ankle, when a breathing tube and ventilator kept Alexander alive, when he was constantly having "spells" and alarms were sounding around the clock, when we thought he may need heart surgery, when a diaper the size of a deck of cards was too big for his tiny frame, when I let myself, for a moment, wonder if he was going to die - having Dr. Klein say these words makes the last 7 months even more real. It's weird that it seems so far away, almost like a dream (or nightmare). I'm brought back so quickly by memories, especially triggered by images and stories of other preemies fighting for their lives.

I still worry every day - but I try to push these worries out as quickly as they pop in my mind. We don't know what the next week, next month, next year, or even next 10 years will bring - for Alexander or anyone. He has already beaten the odds. According to Time Magazine's cover story Saving Preemies, about 55% of all babies born at 24 weeks survive -  only approximately 10 percent of those surviving completely healthy. We just continue to pray and have faith that we will stay strong and give Alexander anything he needs to be happy and healthy in this life.

For now, you'd never know by looking at our fat man that he was a preemie, except for the "cords," as Andrew calls them, going from his nose into one of the oxygen tanks he's always tethered to. He's 13.5 lbs and gaining steadily. We think we have this feeding thing figured out and are thrilled that he's taking a bottle so well - we have really struggled with this and ensuring that he's getting enough calories to grow appropriately.

He turned 7 months yesterday, but we measure everything (growth and development-wise) against his adjusted age (or due date), which puts him at 3.5 months. He's babbling and holding onto toys. He loves to "stand" and play in his exersaucer. He's just a cuddly joy! Plus, our big boy is sleeping through the night!!

Andrew continues to surprise and entertain us. The things that come out that kid's mouth are just hilarious! From telling us at dinner that the food is "tasty" and "awesome" to scolding his brother as he playfully flails his legs "Don't kick mommy Alexander!" - it's just pure enjoyment all of the time. The terrible twos are definitely starting to rear their ugly head - but we'll take the good with the bad - especially with this kid.

Andrew is loving all sports, trains and cars. He recently got his first ride in a fire truck after locking himself in Daddy's running car. He's obsessed with Tim Stop - singing his personal favorites, Maria and London, along with ABCs and Twinkle Twinkle.

Alexander was baptized on May 23rd when both of his godparents, Annie and Tim, were able to be in town. It was a very small ceremony on a Friday morning (to avoid crowds and potential germs) but it was just perfect for our little guy. He did great and barely peeped!

We have been able to get out of the house more often - getting braver with nice weather and being done with cold and flu season. We've done the Country Club a couple times, even going to the pool, as well as on walks and to the Farmer's Market. We love introducing Alexander to family and friends who have prayed for him and thought of us often, especially when they look at him and say, "you'd never know..."

A Miracle in the Flesh

A NICU mom from one of the Facebook groups I'm a member of posted a wonderful story recently. Her mother went to church to pray for their new preemie addition. She began to cry and a nun approached her to inquire why. She shared the news of the preemie's birth and how scared she was. The nun replied with a big congratulations, exclaiming how excited she was for the family. The grandmother was taken aback. The nun said, "Your family is blessed to experience a miracle in the flesh." 

I love when people ask how Alexander is doing. It's not an easy question to ask on their part, but I appreciate it. It's not always an easy question to answer either. I've been overcome with worry about Alexander's future, what struggles and obstacles he will face due to his prematurity, how we are going to handle his feeding struggles and how we are going to resume a somewhat normal family existence. 

Today I was reminded there is an easy answer - "he's amazing, he's our miracle in the flesh."

We had our first follow up with the University of Iowa and our favorite physician, Dr. Klein. Our team couldn't have been happier with Alexander's progress since coming home. "He's just a normal baby," exclaimed Dr. Klein. I think I was literally floating on air. After weeks of stress about feedings and weight gain, we were told to take it easy a bit. They did increase the calories of his recipe (we mix breast milk with formula and protein powder to make it higher calories), and that should help him decide how much he wants to eat and still get the calories he needs to gain appropriate weight. 

They told us to just enjoy having him home and reminded us to not treat our home like the NICU. Basically quit stressing so much. They even said that it was okay to leave the house - as long as we didn't go to places that were crowded or where people would touch him. They recommend getting netting to place over his car seat so that people don't reach in and spread germs. Him getting sick would be a HUGE set back and could place him back into the hospital. 

He seems to be moving along just fine with this development, but we are still in the early phases.

He was also able to be weaned on his oxygen, so now he's down to 3/4 of a liter of oxygen. We will see how he's able to handle this moving forward. Dr. Klein reminded us that he's the boss and will move at his own pace. We go back in July for our next appointment.

After our appointment, we went up to the NICU to say hi to our favorite nurses and staff. Many were there working today, including our favorite, Mary. It was great to see everyone and fun to show off our fat, little guy. We also stopped into parent group and were able to talk to a bunch of parents who had that same scared, hopeless look I had 6 months ago. I like to believe that showing off our little miracle gave them hope that they too would be going home at some point. 

I know it's not the homecoming we all planned or dreamed about, but a miracle rarely is. 

Happy

Just after I had Alexander and was home one afternoon during my recovery, I happened to be watching Ellen (probably when I was supposed to be sleeping). Pharrell performed his new song "Happy". It went like this:

It might seem crazy what I’m about to say

Sunshine she’s here, you can take a break

I’m a hot air balloon that could go to space

With the air, like I don’t care baby by the way

[Chorus:]

Because I’m happy

Clap along if you feel like a room without a roof

Because I’m happy

Clap along if you feel like happiness is the truth

Because I’m happy

Clap along if you know what happiness is to you

Because I’m happy

Clap along if you feel like that’s what you wanna do

It was the perfect time for me to hear a song like that and it became my theme song in my own head for the months to come. 

I can finally say that happiness is here at 1940 Cromwell and it's here to stay. We couldn't be happier to have sleepless nights, hear baby cries or have a winey 2-year old. 

We've survived our first 11 days at home. The breathing treatments, monitors, oxygen, feet of tubing strung throughout our home and our new schedule is all becoming quite normal. Even Andrew told his daycare, "My brother has cords," which we have repeatedly warned him not to pull on or touch. 

His monitor alarms have gone off several times - and no matter what it's like a heart attack, but thankfully they have been minor and he has self corrected. 

Our biggest challenge is trying to get Alexander to eat enough to continue to gain weight and to give Andrew enough attention that he quits morphing into a 14 year old girl (ie crying fits for no apparent reason). Alex is weighing in at 11 lbs 11 oz as of Monday. 

We have a nurse that comes twice a week for an assessment and weight check. She's helping us with his feedings too. We are working on trying to get into more of a routine but it's slow. I'm sure we will get there - one day at a time. 

One hard part is being confined to the house and not being able to have visitors - this is to avoid germs. Alexander is very susceptible to colds and infections so we want to avoid illness at all costs. But it's hard to not be as social as we are used to. Andrew has become OCD about washing his hands and loves using the "special sauce" - otherwise known as sanitizer. 

Alexander is a great baby - smiling and cooing at us. He sleeps and eats and poops and is just a joy to be around. He likes being held and enjoys watching Andew run around like a crazy man. 

Everything we have gone through in the past 6 months helps keep us grounded and reminds us to focus on the small, funny, happy smiles throughout the day. Happy - it really is that simple sometimes.

Most favorite sleeping position in the same cradle his mommy had. 

Brotherly love. 

First walk outside - yes it's still May and still cold!

Passed out on the floor of his room - where I've spent several nights. 

Meeting Nana for the first time. 

 

These two are going to be trouble!!