Therapy, Therapy, Therapy

Therapy

No, it’s not what you’re thinking. Although some days I think I need it! I’m talking about therapy. On top of all of the doctors appointments that the boys go to they also have therapy. Physical therapy, occupational therapy, and speech therapy.

We are so thankful for all of the boys therapists and all they do for Luke and Jake. The physical therapist comes to our house once a week and “workout” with the boys. Physical therapy is just like what it sounds like. The boys stretch and practice climbing up the stairs, standing, and walking. Our physical therapist, Christi, has become a sounding board and friend to me. Since I see her once a week I have become close to her and she has become a sounding board for me. I bounce my worries and concerns to her and without a doubt she always calms me down.

Also, once a week we go to occupational therapy. Occupational therapy is at a private business and the boys absolutely love to go. Occupational therapy consists of playing because at this point the boys job is to play. On the entire drive to occupational therapy the boys squeal with joy every time I ask if they want to go play with Lisa. At occupational therapy there are swings, ball pits, and slides so it is totally obvious why they love to go see Lisa.

The boys just started speech therapy as a preemptive strike. Thankfully, at this point the boys are right where they need to be in their language development. I swear they learn a new word everyday. Once a month the speech therapist comes over and checks in with the boys to make sure they are still on track.

Just this last week we started going to gymnastics with our physical therapist which the boys absolutely love. They had a blast! And, it was a workout for me which was a plus!

I am so thankful for the early intervention program that allows the boys to receive weekly therapy and services.

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March of Dimes: I walk for Luke and Jake

The March of Dimes is gearing up to put on their annual walk and I was excited to get involved and help out. Here is the letter sent out to our family and friends. If it is on your heart to give to a great organization this is the place to do it! Also, a huge thank you for the support and donations to all of you who have donated and who have committed to walking with us on May 3rd!

Hi all,

As you all know Luke and Jake decided to arrive a little bit before schedule, and by a little bit, I mean a lot before schedule. Their due date was August 17 and they were born by emergency c-section May 25 at just 28 weeks gestation.

After a grueling 68 days in two different neonatal intensive care units, in two different states, 3 eye surgeries and 2 brain surgeries they finally came home on August 1, 2012. Adam and I are luckier than most to have them here today.

The March of Dimes is committed to helping moms have full term pregnancies and researching the problems that threaten the health of babies. As you can imagine, the march of Dimes is a cause that’s very close to my heart.

Please help me earn money for this great cause! You can donate by clicking the link below and if you are going to be in Reno May 3rd we would love to have you join our team and walk with us at the sparks marina. Details below.

If you are going to walk with us please let me know as soon as possible as I would like to have shirts made.

Lastly, I would like to thank each and everyone of you for the tremendous outpouring of love and support during which was undoubtably rock bottom. The prayers, texts, calls, visits, meals, and encouragement are what got us through.

Donate and sign up to walk with our team here

Thanks,

Christine Kiefer

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Party Time

In an effort to get caught up to real time I am skipping a couple of months and diving into the boys first birthday party. (I am really behind, their second birthday is only a couple months away)

The boys turning one was more of a milestone for Adam and I than the boys in my opinion. After being told by multiple doctors, multiple times, that one or both or my boys wasn’t going to make it, their first birthday was like a sigh of relief for me. The boys made it, I made it (even though there were days that I didn’t think I would), and I felt like I was finally figuring this mommy thing out!

We invited all of our friends and family, the people who had relentlessly prayed for our family to come out and celebrate our super heroes. Because Luke and Jake are my heroes the party was super hero themed. Since they are so dang cute I will let the pictures do the talking. Special thanks to my sister for making all of the amazing decorations!

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It’s Not Fair. Guest Post

Having sick babies can either unite or destroy a marriage. Going through this situation on my own would have been unbearable but, in my darkest hours I had my best friend to stand by my side. The rest of this post is written by my hubs who hands down is the hardest working, best man I know.

Even though my boys have progressed miraculously well- I don’t mean to be dramatic and I used that word very deliberately. Just last month we had a doctor tell us that Luke was a miracle. Not sure that it’s a term they teach in medical school, but when you’ve had doctors tell you to turn off the machine and now to see a happy 20 month old who goes where he wants and smiles so big every time he sees me that I sometimes make up excuses to leave my office just to see him, it’s hard to find another word. But to my point, even though they are doing amazing things, I can’t deny that some things- a lot of things- are harder for them than they should have to be. In moments of weakness or on days when I see my boys struggle to do things that my friends’ kids do with ease, the old thought that “it’s not fair” creeps in.

Fair is something I’ve wrestled with a lot since my family has been put through what we’ve been through. Is is fair that my pregnant wife spent a month and a half on bed rest, yelled at people smoking across the parking lot and wouldn’t even eat a turkey sandwich because she read some article somewhere that it was bad for the babies, and still had our boys 12 weeks early? Is it fair that we maxed out every credit card we have and relied on the generosity of family and friends to keep our heads above water (just barely) when things were at their financial worst as medical bills piled up? Was it fair that the first 68 days as a family were spent in the hospital- two different hospitals in two different states for a while? We went to church. We payed our taxes. We went to college. We got married before we got pregnant. We did everything “right,” while I watch shows on tv about unwed teenage mothers living off government assistance who drank or smoked while pregnant, or aren’t even quite sure who the father is… But then I have to stop. Who said life was fair? Nobody.

The was no guarantee and there is so little in this world that we can control. In fact, the only thing we can control is the way that we react to what the world sends your way.

When Luke and Christine were in Oakland, I stayed behind in Reno with Jake. I stayed with Jake for a few reasons, not the least of which is that he needed Daddy to come see him everyday so he knew without a shadow of a doubt that he was loved. Also, I had to work, more medical bills were arriving every day, and our savings had depleted quickly. In all honesty, what that little baby didn’t know and probably never will, was that dad needed him far more than he needed me. I’ve never told anyone this story.

When Christine couldn’t work because she was placed on bed rest, we still needed money and what I was making wasn’t cutting it. I called in a few favors and got a job bar tending. Obviously, I still needed my “real” job, so the only shift that worked was from midnight to 8 AM. I tended bar 3 or 4 nights a week. I went to work at my day job at 8 AM, left there at 5 and drove straight to the hospital and stayed there with Jake to feed him and hold him until about 11 when I left to go to the bar. I worked at the bar 3 nights in a row, so on bar tending nights I didn’t sleep for at least 72 hours in a row. I worked, went to the hospital and went to the bar – oh, and drank so much Red Bull that I have no doubt my liver has permanent damage. I have a master degree and I was pouring beer to drunks at 3 AM who ordered me around while I hoped that they give me a decent tip- or at least didn’t skip out on their tab when I went to the kitchen to grab someone else’s food. I had never been so humbled. Between the jobs, the bills, and especially my boys in the hospital, it was the lowest time of my life. I was closer to my breaking point than anyone probably knows. The fact that I didn’t fall asleep at the wheel still baffles me. I’m not proud of this, but I’d find myself in the hospital parking lot with no recollection of how I got there. I sat parked in that parking garage one night trying to find the courage to keep things together before I went in to see my 3 pound baby boy, but I was on the verge of a complete breakdown. I was angry, heartbroken, tired, but mostly I was defeated. I am not an emotional guy, but as I sat there with tears streaming down my face, I cursed God and I told him that I couldn’t go any further- not one more step. If this was a game, I wasn’t playing anymore. I allowed myself a moment, I wiped my face and I went to see Jake where that tiny smile helped me hold things together one more day.

People like to say that God only gives what you can handle. That’s bullshit- he’ll give you a lot more than that. So is life fair? No, it’s not. But it’s not all bad either. On that night when I went to hold Jake I fell asleep holding him after whispering the lyrics to “Sweet Child O’ Mine” in his ear. The nurse put a blanket over the both of us and let me sleep for a few hours. They woke me when it was time for my bar tending shift to start. I didn’t know it at the time, but I had hit rock bottom. They say the good part about rock bottom is that there is only one place to go. The problem with it is that, like trying to time the stock market, it’s hard to see the bottom when you’re there. Within the week, we received word that Luke was coming back to Reno and we’d be reunited as a family. We got word that our new house was going to close and without a day to spare. I also received a job offer that would change my professional life forever. It was a huge raise and I could work from home. Within a year at that company I would be promoted and we could actually afford to have Christine stay home with the boys. And most importantly, the good news started flowing for the boys. They were gaining weight and eating from a bottle. They’d be home soon and my days as a bartender were numbered.

I was a little harsh when I said it was bullshit that God only gives what you can handle. That’s true- but the catch is that you’ll get far more than you think you can handle. On my darkest day, there was no light- none that I could see anyway, but it was there. There was the glimmer in the eyes of my two boys who through their fight, inspired me to never give up, because they sure as hell weren’t going to. They make me proud every day and I am humbled by their strength. So again, is life fair? Unfortunately, the answer still has to be no, but never give up and never give in. It’s hard to see it when you’re in the moment, but those dark times make days spent in the light feel just a little warmer. You’ll find beauty that you never noticed. You’ll cherish the little things. You’ll discover empathy. You’ll find your true friends and you’ll find strength in them and family, but you also have to find it on your own. I just followed the lead of the two strongest people I’ll ever know.

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Comparison if the Thief of Joy

Yesterday I mentioned comparing my boys to each other. After thinking about it, that was one of the very few situations where comparing them was helpful.

My boy Teddy Roosevelt said it best,

“Comparison is the thief of joy.”

Plain and simple. When I check Facebook and Instagram and compare my boys progress with my friend’s babies progress my joy is taken. When I go to a play date and compare my guys who aren’t yet walking with their same chronological aged peers who are walking, my joy is taken. When I compare L to J or J to L my joy is taken. When I compare my life to Princess Kate’s my joy is out the window (I’m only half kidding).

One lesson that having twin micro-premies is to find the joy in everything. And when you think about it, it’s not that hard to so. I am joyful that my prayers were answered. I am joyful that even though my boys may not be doing exactly what they should be doing for their age, they are progressing every day. That tiny little milestone that someone’s else’s kid meets may come and go but in our house is cause for joyous celebration.

It can be so easy to fall into that comparison trap. Instead of comparing I simply remember that I was told on multiple occasions that my boys wouldn’t live and seeing their smiling faces brings me more joy than I ever thought imaginable.

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Four Eyes

Since we were well aware that Jake would be near-sighted because of his ROP it came to no surprise to us that Jake would need glasses.

Lucky for us, since the boys are twins we always have someone to compare them against ( as I’m writing that I am reminded that comparing them against each other is not always a good thing and has caused me a lot of stress. But, in this case it was helpful!)

I could look at Luke from across the room and smile and he would smile back. When I would do the same with Jake he wouldn’t acknowledge or reciprocate the smile back to me. We knew it was time to consider glasses.

The doctor agreed that it was time for Jake to start sporting some specs. As it turns out, a baby in classes is pretty darn cute!

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I get stopped and asked all the time about Jake’s glasses. Here are the FAQ’s

Q: Awww how cute!
A: I know!

Just kidding, and yes, I realize that wasn’t a question.

Q: How did you know he needed glasses?
A: Side effect of ROP laser surgery.

Q: Does he leave them on?
A: Yep, except when his brother pulls them off.

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A little blurry but you get the picture.

And lastly,
Q: How did they know what prescription he needed?
A: I’m not exactly sure but the doctor shines a light in his eye and something about how the light reflects off of his eye. Thank goodness for modern medicine.

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O2

Wearing oxygen isn’t just for little old ladies in Vegas playing penny slots and chain smoking cigarettes. Sometimes, it’s for babies, sweet little babies with under developed lungs.

One thing that I did not want was for the boys to go home on oxygen. But, since I don’t always get what I want both boys came home on oxygen.

Having two little dudes attached to two very large oxygen tanks was a tangled mess. A good portion of each day was spent untwisting and unknotting tubes. On top of that was the constant battle of keeping the oxygen in their noses. L & J’s favorite thing to do was pull their tubes out of their noses which in the early days sent me into hysteria.

On the rare occasion we left the house (usually for doctor appointment) we would have to disconnect from the big oxygen tanks and hook up to portable tanks. The portable tanks weren’t all that portable since they were about the size of a fire extinguisher and weighed as much as the babies did. So, if you are tangled up in oxygen tubes my suggestion to you is to allow plenty of time to get places and recruit a friend, you’ll be thankful for the extra hands!

Just remember soon those o2 tanks will be a thing of the past! And just because they are cute, here are some before and after oxygen pics.

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