We Did It!

I’m not going to lie.  The start of the morning was not pretty.  Ours is not a family that wakes up in the 6:00 hour (and it should have been earlier).  Instant crabby times four.  The weather outside was grey, gloomy and less than 30 degrees.  We scrambled to get everything together and on the way to the stadium we realize that we hadn’t brought a coat for Owen.  Traffic was slow as soon as we got near the race and it was getting late, so finally Kellen and I jumped out to get our race packets and Kyle and Owen parked the car.  The wind was blowing like crazy…Kellen’s coat was in the car…so were his gloves.  We got our race packets and about 6 friends we were meeting were texting me their locations.  Each said they were near the gift shop, none of them were with the other.  It seems all 5000 runners were near the gift shop, it was the only warm place to be.  Finally, I found my aunt, uncle and cousin who were going to stay with the boys while we ran.  It was 7:55. The race starts at 8:00.  Kyle calls.  It was noisy. Did I mention there were 5000+ people there and it was freezing?  I thought he said he was at registration.  The 5 of us, go up three flights to registration.  No Kyle and Owen.  I call him again.  Nope, he’s down stairs about 20 feet from where we were standing.  Ughhhh!  We hike back downstairs.  He’s with friends Scott and Joey and their 9-year old twins, Simon and Piper.  Their baby sitter fell through, so Scott was going to stay back with the kids.  It’s 8:05. Kyle and I snarling at each other the whole way, say goodbye to everyone and get to the back of the runners line just as the competitive group starts.  Suddenly Scott comes running out.  Syd and Dana (my aunt and uncle) insisted on watching his kids too.  They took the kids back up to registration where it was warm and clean and they could watch the start of the race.  Scott and Kyle squeezed a little further ahead.  I started all the way in the back next to friend and fellow Amplatz NICU mom, Rebecca and her husband James and their daughter Madilyn.  “I have a lot of aggression to run off”, I explained.  (She knew that without me telling her, my crabby face said it all.)  The people ahead of us started running.  “Oh crap, I’m about to do this.”  I’ve trained once and by trained, I mean we ran to Dairy Queen and back and I walked a good chunk of it.  The morning was so busy I didn’t even have time to get nervous.  I reached the start line and gave Goldy a high-five as I left the anger behind and enjoyed the scenery of the campus I attended for both undergrad and grad school.

I did it.  I slowed to a walk 3 or 4 times, but each time I started running again after about 15-30 seconds.  I was doing this for Owen.  He pushed through much worse, I could push through 3.1 miles.  Kyle did it too.  He never stopped running.  The ending was really cool.  We ran to the back of the Minnesota Gopher Football stadium and entered the field through the tunnel that the players come out of on game day.  From there, we sprinted to the 50 yard line where the finish line stood.  We certainly didn’t set records, but we did decently well considering our (lack of) training.  He ran it in 31 minutes 42 seconds.  I finished in 33 min 9 seconds.

Next was Kellen, Simon, Piper and my cousin Jade’s (10) turn.  They ran the 1/2 mile kids trot.  Kyle joined Kellen and we bundled Owen into his stroller with our coats and blankets and met them at the finish line.  You can see how excited Kellen was at the end of the race.  He ran the whole way.  I thought 1/2 mile seemed pretty long for a 4-year-old, but when he finished Kellen’s first excited words were, “can we do it again?”

 

Kellen at the finish line, if you look behind them you'll see them on the big screen.

Kellen at the finish line, if you look behind them you’ll see them on the big screen.

In all the morning was a cluster (with a capital F), but it all came together well enough and we had a really enjoyable rest of the morning.  I only wished I would have been better organized to have seen some more of my friends who were running it.  Next year we’ll have a better plan.  Yep, we are already planning to do it again (hopefully with nicer weather).

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Note the fresh snow that had to be removed from the field that morning. Brrr!

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Our group of runners.  And some better perspective on that 8 inches of snow that fell the day before the run.

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Owen didn’t get to do the kids run, he was eight days too young.  However, he works his butt of every day.  Here are some pictures from PT on Friday.

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Remember how I mentioned Kellen was ready for more?  After the race, he went to a birthday party where he ran for two straight hours.

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And, we’ll end with some Owen personality.

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I know this is a little blurry, but that laugh is worth the foggy picture

20130414-214805.jpg20130414-221022.jpgIs it me, or does he look like such a big boy?  Maybe because he will be TWO on Sunday.

Staycation?

Kyle took the week off work last week. We didn’t go anywhere, so I guess that qualifies as a staycation, however, it wasn’t very rejuvenating  These are the things that Kyle did on his week off from work.

  • Got several quotes to refinance the house
  • Got several quotes for new car and home insurance
  • Cleaned the interior and exterior of both cars (haz-mat suits were nearly needed)
  • Cleaned the man room (another haz-mat worthy space that I refuse to clean)
  • Cleaned the garage and shiffted summer and winter toys from the attic
  • Cleaned the chimney
  • Put together some furniture
  • Scheduled several appointments
  • Anchored furniture that Owen might have pulled

And on, and on.

I, on the other hand, felt like I got nothing done. In my defense I did spend 24 hours in bed from being sick. I also had some mommy luxuries like a haircut and vision appointment. But with the time off, my house is still messier than I want it and I had almost no time to open my computer. I’m not sure how it is that Kyle was so prolific and and I didn’t seem to accomplish much. Truth be told, I really missed my nap-time quiet. When Owen naps (or pretends to nap, as is often the case) I write and do blog stuff and answer emails and schedule appointments with doctors and therapists. That one to two hours is sacred to me and last week…I had my husband in my space. I’d start a project and then get interrupted and could never pull it all together. I missed phone calls, texts, emails, outings with friends that I still need to go back and grovel my apologies for missing.

I don’t mean to be mean – it was wonderful having him home and to get some family time. Kellen was in heaven having both parents home all week and, in all, we got a lot off the to-do list. The realization for me was how much I depend on periods of uninterrupted quiet time to stay focused. It’s been a year and a half, but I’m still getting to know this stay-at-home person that I am right now. Apparently she really doesn’t like missing the work part of her day.

Goldy’s Run, benefiting University of Minnesota, Amplatz Children’s Hospital is this Saturday. Our training has been pretty much non-existent. I hope it doesn’t kill me. Seriously! After a run this weekend, Owen had some pointers for me.

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Clearly, he wasn’t impressed with my effort.  His look says, “is that all you’ve got?”

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We made it a family affair.20130408-115656.jpg

 

How do you like Kyle’s new shoes? It’s his first pair of athletic shoes in over ten years (he does winter sports that require boots). Even so, he did well yesterday. I think he’ll be able to run the whole course on Saturday. I, on the other hand, will likely need a few walking breaks.

Here we are on the runner’s high after the practice yesterday.  Kellen’s cheeks are red because ran some of the run too.  He’s participating in the Kid’s 1/2 mile Goldy’s Gallup and cannot wait to run on the field and see Goldy.

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I know several readers are doing the run, send me a private message if you’re going and we can set a place to meet.  Dress warm, the weather isn’t predicted to be very friendly.

 

Family Time

We had a really wonderful long weekend together as a family and we had the freedom to truly enjoy the sites and sounds.  Guys, we went to a small museum!  As a family!  We went into a Target store.  As a family!  Kyle, me, Kellen and Owen.  An entire unit.  The entire family.  No oxygen dangling from my shoulder.  Just Owen in his carrier, Kellen holding our hands and the camera.  It was what a family trip is supposed to be and it took us 3 weeks shy of 2 years to get it.  Pretty perfect.

Pictures of really happy faces say more than my words can.
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Easter Art

The content on the blog so far this week has been pretty serious.  Deep down, I think some of that seriousness comes from the fact that we are nearing Owen’s birthday.  Yesterday was the Thursday before Easter.  Owen was born the Thursday before Easter.  These preemie birthdays are EMOTIONAL!  Thanks everyone for all the support as I work through these feelings.  It’s been pretty overwhelming to see that I’m not alone in all of these thoughts.  With three days to go, this week has already had the most page views in ANRC’s history.  Thanks for sharing, everyone!

While my writing has been serious, things in our house have been pretty light and full of art.  Here are some pictures of the boys and their masterpieces this week. Dying Eggs Easter Eggs 2Picture1 Boy PaintingKellen's Masterpiece Owen's Masterpiece Toddler Art 2 Toddler Art

Lots to Fodder but No Time to Fodder

Hi Everyone, I know a lot of people get worried when I don’t post on my regular days, so I’m just doing a quick check in to say, we are here and we are doing well. This week has been incredibly busy. Last night was the first time I pulled out my computer since Monday night and I was so behind on emails that email was as far as I got.

This week we had Kellen’s Kindergarten screen. I had a fabulous overnight (and then a little recovery time the next day) with friends I haven’t seen since high school. Kyle was traveling a good portion of the week. Owen had therapy appointments with PT, Speech and Early Intervention and he had doctor appointments with Pulmonary and Physical Medicine &Rehab (PM&R also known as Physiatrist).

Everything went well, here are a couple highlights.

  • Owen’s is now only on oxygen as needed during the day time and he will continue with it on at night. I don’t want to jinx it, but I think his next letter to nasal cannulas will be a doozie (I don’t think my letter to the oximeter will fit ANRC’s PG rating)! Pulmonary was really, really pleased with Owen’s breathing and endurance for physical activity (she had to chase behind him with the stethoscope to listen to his breathing).

    Owen enjoying life without the cord.

    Owen enjoying life without the cord.

  • Owen was fitted for Ankle Foot Orthosis (AFOs) today. These are braces that will support his ankles and the doctor thinks they will jump start his walking. For now the braces are a test. She’s not predicting where Owen will net out in terms of needing braces or arches as he gets older. “He’s a moving target,” is the phrase she keeps using about him, and she’s right, the kid doesn’t stop moving ;-). In a rare break from movement, here’s a picture of him sitting nicely for his AFO molds.20130322-133840.jpg
  • I mentioned that I got together with friends I haven’t seen since high school. We went to the P!nk concert, which was great. There were 8 of us, so we rented a limo. There were some libations involved. Because of the company, I might have thought I was eighteen again. The bruises on my legs the next day were a great reminder that I may have taken a ride on a mechanical bull. My phone even has some footage of it. It’s kind of embarrassing. I don’t like embarrassing myself…but…I will…for a price. If I get a total of $200 more (starting from $180, so I need to end at $380) in donations to my March of Dimes walk before 12:00 midnight, Monday 3/25, I’ll post the video. I dare you to make me embarrass myself. Click here if you’re interested in supporting our walk.20130322-133933.jpg

 

Alone With Scissors

Can someone explain to me why it is that every kids goes all the way to the scalp when they finally satisfy that urge to cut their own hair?

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And, really, why is it always half of their bangs?20130317-210619.jpg

As if you can’t tell by the look on his face, there was no remorse.

Okay, I laughed a little when I caught him in the act.  And then so did Kyle when he came to inspect after he overheard me say, “Kellen, are you cutting your hair?”  We figure every kid does it once.  However, the more I inspected, I kind of wanted to cry.  I loved his shaggy hair and this was short.  Bald spot short.  All I could picture was a buzz cut.  I know, many kids look great in buzz cuts.  It just doesn’t fit Kellen’s personality.  At all.  Kyle agreed, no buzz cut.

The stylist at Kids Hair looked at me with a little apprehension, when I said I wanted it to blend in, but I didn’t want his head shaved.  “No clippers?  Just a scissor cut.”  she confirmed.  And, she tried a shorter cut and left enough on top and bang on the good side to comb over his bald side.  She did the best she could with what she had to work with, but it still looked like a comb over covering a bald spot.  I thanked her for trying and then gulped and pulled out my back up plan.  “If you can’t blend it in, let’s leave it there and divert everyone’s attention away from the bald spot.”

Kellen was pleased.

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And then, he was ecstatic after she sprayed it green.20130317-210701.jpg

Unfortunately, the lessen Kellen just learned was that if he cuts his hair, he gets a “really cool” haircut (that sort of makes his parents cringe).  But, as Kyle said, “at least he didn’t cut Owen’s hair.”

I know it’s just hair, but nobody better touch these crazy curls!

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Tomorrow I’ll be posting the less emotional account of Owen’s first Gastroenterology appointment that he had last week.  While it did stir up some lingering anger, I am hopeful that we can have Owen gaining weight without the discomfort he’s had in recent months.

Also, I’m posting this on Sunday night because Monday we’ll be busy with Kellen’s Kindergarten screen.  Ahhh!  K-I-N-D-E-R-G-A-R-T-E-N!  I shouldn’t have to be thinking about this so soon!

The Almost Perfect Day

I don’t know about your weekends, but our weekends have turned into chaos.  I’ve been cooped into the house most of the week, so Kyle tries to give me time away.  We both have a list of errands that we are trying to get done.  There is often one or two kids that are trying to weasel their way out of nap time and then there are the typical temper tantrum moments, doing laundry and on and on and it adds up to not quite enough time of enjoying each other’s company.

This Saturday was planned to be that day, instead, we took a moment to slow down.  Kyle got in from a business trip around noon.  I was getting ready to go, but then he laid on the couch for a minute and the errands left my mind.  I laid next to him and then Kellen climbed on top and Owen found his way over too.  We don’t get many family days and so I made the decision to skip errands (yes, Target is often my “mommy time”.  The luxury!)  We spent the whole day at home and just hanging out together.  There was a little laundry done, but no towering piles.  Kellen helped me make dinner.  We had a late, but leisurely dinner and then somehow, I ended up playing a certain Sir Mix A Lot song that the boys, fortunately, didn’t quite understand and we had a family dance party in the dining room.

It was perfect.  It was the type of day when we look back on life, this is how we’ll want to remember it.  Lots of hugs, lots of giggles and time together.

After dinner and the dance-athon, I told Owen it was time to go to bed.  I gathered his oxygen tubing and his feeding supplies and he headed up the stairs.  I didn’t see exactly what happened next, but I am pretty sure he got to the landing and was looking out the window.  He’s starting to get more adventurous with static standing lately and occasionally lets go of what he’s standing against.  What I do know is what I heard; “thump, thump, thump”.  As I was running to the stairs I could see Owen’s feet in the air as he was cartwheeling down the steps.

I was crying before I got to him and was relieved to see he was crying too.  I whisked him to the backroom to assess him (and gather my composure) without Kellen’s worry.  He stopped crying quickly and gave me a look that said, “how did that happen”.  He had no bumps or bruises and started playing peek-a-boo with Kyle and Kellen when they came back to see how he was doing.  He then started crawling around on the floor and acting normal.

My gut reaction was he was fine, but it was 10 stairs.  I called the nurse who had my same reaction.  She felt like it sounded like he was fine, but recommended he be seen by a doctor based on the severity of the fall.

Kellen wasn’t thrilled to hear that Owen had to go the doctor (we didn’t specify that it was the ER), “but there are germies at the doctor’s!”  (He’s well trained on where germies live).

The ER was busy, so we had to wait an hour and half to be seen and then the visit was short and pleasant.  When we went back with the nurse I cautioned that, “he has medical anxiety” and she said, she remembered him well.  They weighed me holding him and then just me, instead of putting him on the evil scale.  We waited for about 30 seconds and, with a smile, in walked a doctor that has known Owen since he was one month old.  He’s an infectious disease specialist that followed Owen until last summer and has also a hospitalist who has been the attending during a couple of hospitalizations.  Saturday night, he was apparently moonlighting in the emergency department.

Based on Owen’s demeanor and how he reacted immediately after the fall the doctor’s concern level was low.  Instead he was awed to see how great Owen was doing.  He asked to see him cruising and said with amazement, “his legs aren’t going to stop him!”  He had never told me he thought Owen would struggle to walk, but, it seems he had some private wonder.  Just think, last June when this doctor last saw Owen he could barely support his own head when being held and now, he’s having accidents because he’s got his mind-set on walking.  We also talked about the fact that Owen’s only had one night in the hospital since last April, but I quickly changed the subject (stay away you evil jinx).  And then we were sent home.

The fall was terrifying, but fortunately Owen escaped injury.  Our day was no longer perfect.  We were reminded that with the reward of new skills, come new risks.  We had reached a place where we were becoming comfortable with Owen going up and down the stairs by himself.  However, as he now is working towards static standing and then walking, our guard has to come up again.  I hate that I didn’t figure that out sooner, I don’t even want to think about how badly he could have gotten hurt.  I have a lot of guilt, but mostly, I’m just thankful that it turned out okay.

 

Arizona Adventure

I crawled and Kellen clamored into bed around 1:15 AM.  We just returned from a jammed packed trip to Arizona where we stayed with Grandma Sue for 3 nights.  Besides seeing family, the trip was also great to give Owen and Kyle and Kellen and me some bonding time.  Often Kyle and Kellen go on the adventures and I stay home with Owen, so this was a nice change of pace for everyone.  I got so many hugs and kisses from Kellen throughout the trip, it was really nice.

Kellen was really excited to see Grandma, Grandpa and Great Grandma; ride in an airplane, which he hasn’t done since two months before Owen was born; see the mountains; and spend some time with Cyrus. We also went to the Phoenix zoo with my step-brother and his family on a perfect 80 degree day, spent lots of time outside and had an impromptu visit from one of my Junior High BFFs who was taking classes a couple of hours from my mom’s house for her job in the army.  It couldn’t have been a better trip – unless of course the whole family could have come.  We all can’t wait until Owen can start traveling with us too.

Here are some pictures of our trip.

watching our plane get loaded

watching our plane get loaded.  His excitement is not faked.

Four Generations

Four Generations

 

After watching the rocket launch into space on TV, we did a lot of water rocket launching in Grandma's backyard.

After watching the rocket launch into space on TV, we did a lot of water rocket launching in Grandma’s backyard.

Kellen liked the cacti trees everywhere.

Kellen liked the cacti everywhere.

My first baby, Cyrus, who is very, very spoiled by Grandpa Slavko.

My first baby, Cyrus, who is very, very spoiled by Grandpa Slavko.

For those of you who haven’t been following since last May, Cyrus was one of our three animals that we had to find new homes for because of Owen’s allergies.  They are all with family or friends of family, which made the transition easier, but we miss our animal friends.  It was sad to leave Cyrus and it sounds like he was pretty sad to see us go too.

picking oranges

picking oranges from Grandma’s tree

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We went to the zoo with cousin, Luke. Here Kellen was watching the Cheetah in the distance.

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What a special treat! The captain invited Kellen to sit in the co-captain seat with his hat and he even let him put his hands on the wheel.

We were tired this morning, here is what we looked like when Kyle left for work.

We were tired this morning, here is what we looked like when Kyle left for work.

Fortunately, Owen let us sleep until 9:00 AM.  Kellen is taking a long nap this afternoon.  Owen decided he did enough favors by letting us sleep in, so no nap today.  That’s okay, I’m getting cuddles.

 

Not Just Preemies

On Sunday, my cousin and her husband were in a snowmobile accident.  He was seriously injured.  He had surgery yesterday and they confirmed that his spinal cord has been severely compressed and doctors are saying that chances of him regaining movement of his legs are low.  He’s in a hospital 5 hours from their home.  They have a 20 month old son.

The CaringBridge update was brief – mostly facts; removing the ventilator today, working towards getting healthy enough to start therapy (hopefully at a closer-to-home facility), reactions of their son seeing his daddy in the hospital.

All of these things felt so familiar.

My heart breaks for my cousin.  Obviously, I don’t know exactly how she feels, but I bet there are a lot of “what ifs”.  I am pretty sure there is guilt, anger, fear of the unknowns, financial concerns, worry about logistics and the emotions of her son.  She’s probably overwhelmed with medical jargon and, even though family is with them, I bet she’s feeling pretty damn lonely right now.

I’m sure I don’t know half of her layers of hurt, but I so wish I could, in some way, make it all go away for her.  I know close enough to what she’s feeling, and it really, really, really (infinite number of reallys) hurts.  I want to protect her.  I want to hug her.  I want to say the perfect things.

That protective instinct towards those behind me is exactly why I blog as honestly as I do.  When I make the decision to share some of the hard stuff, I do it because if that makes one preemie mom feel better…if even for a moment…then it was worth putting out there. Now, I’m starting to realize that it goes further than just preemie families.

I’ve never been naive enough to think that preemie parents were the only people with problems in their lives.  However, I don’t think it was until sitting down to write a note to my cousin on email and CaringBridge that I really thought about how many other people in the world have been through similar situations as we preemie families are facing.  I was flooded with emotions.  It makes me wonder, did I do that loneliness to myself?  Did I just think nobody could really understand when really I wasn’t giving my support system enough credit?

At one point I wrote that sometimes “who” comes to your support during these times may surprise you.  It’s not always the people who are your closest friends and family, but as I look back, I guess it’s not so surprising.  It was friends and acquaintances in the medical field and those who have dealt with long term medical issues in their family.  Maybe they didn’t ever deal with having a preemie, but they knew more about what I was going through than I think I understood.

That realization makes this journey a lot less lonely.

I can’t take away my cousins pain, but I do hope, that I can use my enhanced empathy to, in small ways, make a moment here and there a little less lonely.

Please include Jered, Nicole and their son, Gaige in your thoughts because I know this ANRC community understands a lot of what they are feeling.

Four

I’m not at all surprised that this silly boy.

Turned into this silly boy.

bath robe

 

But I’m not really sure how, so quickly, these two

became these two

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At fourteen months, we cheered as you took your first steps.

Lately, we cheer when you agree to this.

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Kids growing up too fast is a discussion of every mother, and I don’t want to suppose that your growth is any faster. But really, some days, I think this doesn’t seem so funny.

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Happy birthday to the sweetest, silliest and bravest four-year-old I know.