Preemie Stats

I have wanted to write a book about our first two months in the NICU with Madison, but every time I start writing about her birth, I start crying. Thinking about how small and fragile she was breaks my heart, but seeing her now almost ten years old and healthy has warmed my spirit enough to actually get a little serious about writing. Truth is, I believe that Allison will be the only one that reads the book, but I want to write it anyway. If it does get out there for others to read, then hopefully it helps or encourages others. As I started looking into some information about Madison's birth, I found her measurements and other information at and around birth. So, here they are:

Weight: 0.628 kg (1 lb 6 oz)

Length: 30.5 cm (12.2 inches)

Number of Diagnoses by discharge: 28

Number of Surgeries: 1 (laser eye surgery to correct ROP)

Number of Chest Tubes: 2 (both in left lung at the same time)

Oxygen Assistance through 1st birthday

Respiratory Distress Syndrome

Chronic Lung Disease

Failure to Thrive

Synagis given as RSV immunoprophylaxis

Blood Transfusions (NINE TIMES)

8-9 rounds of antibiotics or antivirals (some overlap with others hard to keep straight)

Most of this happened by three months of age. Once again, I find it hard to write, but I'm hoping by writing this on the blog I will find the strength to express our experiences while in the NICU at Swedish Hospital.

A New Car?

GREEN ONE!

Well, green-ish. So Emma has taken notice of all those VW commercials and insists on playing Slug Bug (without the slugging) every time we climb into the car. So we play and have lots of fun, but when I wrecked the VW Passat Wagon, Emma said immediately, "So, let's get a Bug car." I laughed and thought never in a million years will we ever buy a Bug car.

I later told Allison what Emma said to me about the Bug car, and Emma piped up what a good idea she had about getting a Bug car. Allison looked at Emma. Then, Allison looked at me. She then said, "That is a great idea Emma! Do you realize how cute we will all be driving down the road in a Bug?" I'm thinking that I'm fighting a loosing battle, but we were picking up Madison from school soon, and she will take my side. When we picked her up and she got in the van, Emma blurted out, "Madison, we're getting a Bug car!"

To make everybody happy, I made the comment, which I thought would win the battle for me, "We will go test drive a Bug car to see if Daddy even fits in one." For those of you that don't know me, I'm a 6'3" 300 pound man with big, broad shoulders. I tried to fit in a VW Jetta once, but I was way too big. I thought that the Bug car would be similar in size, so I thought we would never talk about a Bug car again. We made our way to a local dealership to find a Bug car on the lot, so we ask to test drive it. I started laughing at the thought of possibly getting stuck in the car (it's happened before) as I sit down. I'm sure Allison was laughing at the look on my face as I looked all around trying to figure out where all that room was coming from. I was shocked! It has as much or more room than my recently deceased VW Passat. So...

I lost the battle. So for a week or so we have search all over the internet, talked with the professionals about the differences Bug cars can have, and we test drove many different Bug cars all over the county. The picture above is a Green(ish) 2001 VW New Bettle 2.0 Liter engine with automatic transmission and leather, heated seats. It is getting one final inspection at the shop to make sure everything is in order, and then we will pick it up Tuesday or Wednesday when it will be officially part of our family.

Gregg

Waiting for an Invitation from Creigton University

If you count today, there is only TEN days left until the final interview at Creighton University's School of Pharmacy. Last year, I was interviewed and placed NUMBER ONE in the alternate pool, and I was told to pack my bags and be prepared to leave last minute for Omaha, NE. You can read some of my older post about our adventure driving to and from Omaha, including getting pulled over by a police office and driving through a dozen snow storms in May. It was a good crazy time, but I didn't get into Creighton last year.

I called the school today, and I was informed that a round of denial letters were mailed out last Monday and again yesterday, but I was not one of the people mailed one of those letters. "When are the invitations being sent to the applicants," I asked. "There is only ten days left before the final interview date." I was informed that all decisions are being made this week and will hopefully be sent out later today, tomorrow, but no later than Friday.

I wanted to yell at the lady giving me this information, and I'm sure my boss is right there with me. Giving two weeks notice that you will miss a week of work to go interview is pushing it, but now I will have to give my boss a week notice

or less.

Creighton's School of Pharmacy is an amazing program, but I am having some difficulty with possibly such a late notice about an interview. I was recently reading Sasha's Blog, and I was reminded about the perfection of God's timing. I don't know what His timing is for my family and me or where we will live (Denver is a possibility), but I need to have faith in His plan. For example, you never know how important three months is until your baby is born three months early, spends almost six months in the NICU, almost died dozens of times, but you know God's timing is perfect. All that stress, all that money (much of it still owed), and all those miles and hours driving 100 miles from our house to the hospital all happened because God's timing is perfect. Because his timing is perfect, we met amazing nurses (one of whom now lives in our town and whom we see from time to time - plus, she was our favorite by far), doctors, and staff, we met some amazing parents, a brand new procedure was performed on Madison that saved her life and many babies after her due to its success (including a baby boy that shared the NICU room with his twin sister and Madison and after looking at how healthy Madison was after the procedure, his parents said, "Of course you can do the procedure," not knowing how close their son was to dying or how dangerous the procedure is to perform), and our faith grew and became rock solid. Over the past ten years, our faith has helped us through so many difficult times, including another baby born premature that spent 3 months in the NICU, my declining and recovering health, and now my schooling situation. Going to school last year would have been great, but we know not what God has planned for us or where we will be in the near and distant future. That faith that was strengthened so many years ago is helping us during these unknown times.

I need to say at least one more thing in this post; the unknown that we are experiencing about which school will I attend or in which city will we live is nothing compared to the unknown the people in Japan are experiencing right now. My thoughts and prayers reach out to them as their unknowns are about survival. My unknown is wondering where I will be living next year but knowing that I will be in a house with my family that is in a city that has no damage. The people in northern Japan don't know if their spouse or child or parent is alive, can they survive another night in the rubble as snow falls on them again, or will there be enough food to feed their family today, tomorrow, or next week. I ask that as your thoughts and prayers are extended to my family and me, please don't forget about the people in Japan. Their needs are far greater than mine, and I hope that you would spend more time in prayer for them.

I would like to think everybody for their prayers and support as this 10 years journey is in its final four years. I will be in the graduating class of 2015 from either Regis University or Creighton University.

Gregg

The Mysterious Phone Call

When I was getting my hair cut at Great Clips about two weeks ago, something funny happened. For those of you that know me well, I tend to preface my stories with a little background, and I will not only do that here, I will do it twice. First, I find many things in life funny, and I therefore laugh easily. Second, I am reminded of an Adam Sandler audio skit where he plays an old man answering a prank phone call from some young boy played by an actor named Steve Koren. When Sandler answers the phone, the boys say something prank-ish and hang up. The next five minutes or so is Sandler talking to a dead line with lines like, "Hullo." "Who is this?!" "For God's sake. Answer me!"

So, with those two things said, here is my story from Great Clips:

When I am seated at my chair, an elderly gentleman walks in, checks in, and sits down. About two minutes later, the Great Clips' phone rings. That's right, the store phone rings. The lady cutting my hair starts to walk to the front of the store to answer the phone. After the first ring, the old man grabs his cell phone, puts it to his ear, and says, "Hullo. Who's this? Hullo! Answer me! Who's this?!" The phone rings again, "Damn phone! How do I answer this thing?!" He puts the phone to his ear again as the lady cutting my hair starts walking slower. "Hullo. Hullo! I can't hear a damn thing! Speak up! For God's sake. Answer me!" The phone rings again. "How the HELL does this thing work?! Hullo! I can't hear you! Speak up! Hullo!"

"Thank you for calling Great Clips, how may I help you," says the lady who is cutting my hair.

"Ain't that damn embarrassing," says the old man. "It was the store's phone the whole time." He then picked up his magazine and started reading like nothing happened. The lady walked back to my chair quietly laughing and said, "I just couldn't help myself."

Total Loss

Tuesday morning was a little different than our usual morning, even before the above picture happened. Our babysitter was generous enough to take Emma Monday overnight, and she brought her back Tuesday morning. So we got completely ready even before Emma got home, and as many of you know, Emma is loud and bouncy. So our morning was much quieter than normal, but once she was home, Madison, Emma, and I left for school.

On the way to school, I practice Madison's spelling words with her, and when she finishes spelling all the words from her list, we all get to listen to music. So as we head north on a road near our house, I ask Madison for her spelling list, and she informs me that she received one from her teacher but she doesn't have it anymore. Just to give you a little background on this road we are traveling, it is straight for most of the trip with a few driveways along the way. After about a quarter mile on this road is when I asked Madison for her spelling list, when she doesn't have it, I turn to look at her and ask her why. She then yelled, "DAD!"

I turned just in time to slam on my brakes to reduce the impact my car made on the stopped car. The truck in front of the car I hit was turning left onto a seldom used gravel driveway. In fact, after years of driving this road, I have never seen a car turn into or out of this driveway. I have never, ever seen a parked car or truck in this driveway that doesn't even have a house belonging to it. No excuse but come on!

The girls cried, especially Emma. When we all calmed down, we all ended up to be fine. The girls are sore, and my neck and back are killing me and giving me a nasty headache. When I talked with my insurance company's appraiser, he said that the structural damage is bad enough that the car is a, "Total loss." He didn't even spend any time looking at the engine, but I guess there is no point at that time. The car had 170,000 miles on it and took us across the country, but I'm going to miss it. It has driven me to endless classes, but it won't drive me to pharmacy school. I have driven tens of thousands of miles to and from work but never as a pharmacist. The car treated me very well, and we will all miss it. Now that it's gone and Emma's tears have dried, she is trying to convince me to buy a yellow Bug. Now it looks like I'm outnumbered as Allison and Madison have joined Emma's side, but the biggest problem getting a Bug, I don't fit inside.

When we emptied my VW of all its contents, I ended up with this small box of stuff, and the first aide kit took up most of the space. Thank goodness nobody was really hurt from the accident, and I am especially thankful for the great police officer that wrote me a ticket for not paying attention while driving (seriously, he was great with the kids and the whole situation), the fire fighters, and the EMTs. Everybody was fabulous with the girls and really calmed everybody down.

Born Too Soon

I wrote this poem when Madison was in the NICU (Neonatal Intensive Care Unit) at Swedish Hospital sometime when she was about ten weeks old. For those of you that don't know, Madison was born around 27 weeks gestation at 1 lb 6 oz. Her lungs just starting to flutter and not yet able to breathe on her own, and nurses and doctors were doing everything they can to save her life just minutes after she is born. This poem is about the day Madison was born, and I followed Madison to the NICU from the delivery room after Allison had an emergency Caesarian. I hope you enjoy the poem about my first hour or so with Madison.

Born Too Soon

Little Miracle born too soon, so small on the table

Three nurses working on you

They stuff a tube down your throat

Don't worry Honey, it's to help you breathe

So fragile, I can't pick you up

To hold you or kiss you

Your skin is transparent

I can see all your insides

You're not expected to make it

No worries, I've been talking with the Man upstairs

You look up to me

Weighed down with tubes and wires

Your gaze warms me with the love you give

You're just happy to be out

Sharing a special private moment with your Daddy

Even though the hospital is bustling about

That bond we share will never be broken

Because the love we share is eternal

And because of God's mercy and your hard work

We'll share our lifetime together

Gregg

CANCER SUCKS!!!

Many of us have been affected by cancer in one way or another, and many of us affected have lost loved ones to this horrible disease. In a six to seven month period a few years ago, we lost half a dozen friends and family members to cancer, including Allison's birth dad. I still have people that approach me in the pharmacy that recognize me as Allison's husband and stop to talk with me about Tony and how he positively impacted their lives. His three girls and seven grandchildren will carry on his legacy and will share their memories of him, but what happens when the person that get cancer is a child. In the year 2010, approximately 10,700 children under the age of 15 in the United States were diagnosed with cancer, and about 1,340 of those children will die within 5 years. That's better than 80% survival rate, but it is still not good enough. Those numbers are far better than in the 1970's where 50% of children with cancer died within 5 years. Why is there such a big difference in survival rate over the last 40 years? Determined individuals have worked hard to raise money, raise awareness, and make medical advancements.

The Rally Foundation is a 501(c)(3) non-profit organization that empowers volunteers across America to raise awareness and funds for childhood cancer research with hopes to quickly find better treatments with fewer long-term and possibly permanent side effects and, ultimately, a cure. The most amazing aspect to the Rally Foundation is that 93 cents of every dollar these volunteers raise goes toward research.

There is a regional chapter called Rally NW which is a team of athletes that train and participate in local races to raise money for childhood cancer research at the Seattle Children's Hospital. Team members train for and participate in the Tacoma City Half Marathon/Marathon and the Seattle Rock N' Roll Half Marathon/Marathon. There are also team members participating in the Sprint Triatholon in Ocean Shores, WA. Rally NW was started by Kathi Clarke and her brother after their neice Kelsie passed away, and they are doing an amazing job carrying on her legacy.

One of the most important aspects of Rally NW are the Rally Kids. Each team member trains and participates in local events in honor of a child that is either currently in treatment for cancer, in remission, or has passed away. These children and their families inspire the Rally NW team members to work hard, never give up, and count their blessings.

My friend, Molly Sjoboen, is in her second year as a Rally NW team member and is participating in the Seattle Rock N' Roll Half Marathon later this year. She says that being a Rally NW team member and raising money for childhood cancer research has been an incredible experience, meeting new people, and challenging herself while helping children and their families. Molly, like all team members, is training and participating in honor her Rally Kid named Rhema. On January 23, 2009, Rhema, then 12 years old, was diagnosed with a rare and aggresive cancer called desmoplastic, a small round cell tumor. Rhema underwent treatment consisting of 6 rounds of chemo and surgery, then 2 more surgeries and 5-6 weeks of intensive radiation. Rhema then went into remission. Spring 2010, however, she had a relapse which included more treatment. Recently, Rhema and her family found out the devastating news that her cancer has spread and there is little doctors can do for her now. She is currently at home and is enjoying time with her family and making memories that will forever be in their hearts no matter what the future holds for this sweet, young girl.

Another fundraising event that Molly and her Rally NW team members are having is the 3rd Annual Olympia Pub Crawl in Downtown Olympia, WA. They have already received an incredible amount of support from the Olympia's downtown businesses and are looking forward to a very successful event!

3rd Annual Olympia Pub Crawl details:

What: A tour of bars and restaurants

When: May 7, 2011, from 4:00pm to 12:00am

Where: Downtown Olympia

Who: You! (Event Coordinators: Molly Sjoboen & Adrienne German)

Attire: Official T-Shirts $20 & Hooded Sweatshirts: $30

Donations Due By: April 10, 2011

By purchasing an official Pub Crawl T-Shirt or Sweatshirt, you have purchased your ticket to the Pub Crawl, and the money raised will all be donated to the Rally Foundation.

If you would like to participate in this event or just donate and receive a T-Shirt or Sweatshirt, you are able to donate online at:

Molly's Rally NW Donation Page

You can send the size of T-Shirt or Sweatshirt you desire by emailing Molly at mollyd1974@hotmail.com or through the Pub Crawl Facebook page: Pub Crawl Facebook Page

When Your Story Is Motivating

Today I was working in another pharmacy branch of our chain, and a lady walked in with her two boys (one of whom was very sick). I recognized her immediately, but it took me a few minutes to figure out how I know her. When she returned about 20 minutes later, I said, "I know you." She told me that she worked in the library at our local community college.

We talked for a few more minutes about how I was taking my prerequisites for pharmacy school, how I am finally starting pharmacy school this August, and how I last went to the community college about a year and a half ago. She then looked confused and said, "But you seem so much more familiar to me like you were at school last quarter." I then explained how I was the guy that brought my daughters with me to the library and reserved one of the study rooms 2-3 times per week and on Saturdays.

Her face then lit up. "We talk about you all the time!" she exclaimed. "When possible returning students come and visit us at the college," she explained, "and they tell me that they are concerned about returning to school because they have small kids at home, I tell them your story. I inspire these people based on your success at school and how you brought your girls to the library with you. And now, I can tell them that you are entering a pharmacy program this August." I was blown away. I always felt that bringing the girls to the library with me helped me stay focused on why I was going back to school, and whenever I needed a break, we would draw on the white board or play tic-tac-toe. I never imagined that my story would inspire people. My story of returning to school is only half complete, so I am anxious to see what the story second half will tell.

The Day I Died

I was reminded today about a poem that I wrote about Madison when she was in the NICU at Swedish Hospital about 9&1/2 years ago, so I thought that I would post it. It's a little long and emotional, but it's a good reminder for me about how fragile she was and how far she has come.

The Day I Died

The day I died,

Started like any other,

My Mommy and Daddy were here to visit me

They're very nice, they're here all the time

I'm only two pounds, if that

My lungs don't work right, I can't eat

I have a tube down my throat

But, I still have my binky

I still have my Mommy and Daddy

I was very excited

My Mommy and Daddy were going to be there

They were going to see me be weighed in

I'm only two pounds, but it takes five people to move me

Two nurses, a respiratory therapist, and others I don't remember now

I see my Mommy and Daddy

They look so proud

My people pick me up to move me, on the count of three

They're going to put me on the scale

My Mommy and Daddy are going to see how big I've gotten

They're going to be so proud

Then, the looks on their faces scares me

Bells and sirens go off

I've never heard these noises before

They're not my normal alarms

My Mommy and Daddy get pushed out of the way

As more of my people come rushing in

I can't see my Mommy and Daddy

My people are in the way

Then I see them, with tears in their eyes

They look scared

My people are all around me, what can I do

My people are playing with the tube in my throat

As things go gray

I hear my people talking about me

They're saying that I'm blue, then white

Then... I fall asleep

When I wake, my people are pushing on my chest

It hurts real bad

They're talking about my oxygen levels, blood pressure and stuff

They stop pushing on my chest

I see someone behind the front line, with paddles in her hands

She is one of my people, and she says she's ready

One of my people, one of my doctors

She says that she's not needed now, but stay close by

Those paddles scare me

What do they do

I'm only two pounds

Please be gentle

As I look around at my people

There are more than my fingers and toes

They're all looking at me, touching me

My doctor then finishes playing with my tube

It really hurts to swallow

I can't find my binky

Some of my people are starting to leave

One by one

They don't look as scared any more

But, I still have my five people

Around me, helping me

"Can you get my Mommy and Daddy?"

They were scared

They were pushed out into the hall

I just wanted them to be proud of me

I'm getting so big

I'm two pounds now, at least, maybe more

I want them to hold me

I want to be hugged

But they can't, I'm only two pounds

My lungs are too fragile

I can't breath on my own

My Mommy and Daddy are coming back in

They don't look so scared

I still see that they're crying

But, it's different, some how

They reach through my wires and tubes and under my plastic blanket

They rub my head, I know

They love me unconditionally

They will always be there for me

And right now, they're hugging me with their hearts

And on that fateful night

The day that I died

Something changed inside me

I do not know what

It may be the love my Mommy and Daddy showed

It might have helped to see my people work so hard

Or the people praying 'round the world

I know that I still have a long journey and many battle ahead

But I know that I need to change this title to:

The Day I Started Fighting Back

Gregg

Skipping through the Orange Grove...

When I was visiting my mom in Arizona, we went on many adventures, but one of the greatest things that we did was pick oranges, tangerines, and grapefruits. My mom lives in a retirement community just outside of Phoenix, and she has many nice neighbors that always say hi when you see them walking past. In my mom's backyard, she has two orange trees, one tangerine tree, and one grapefruit tree, and every morning, it was my job to go out back and pick a couple grapefruits for my breakfast and a bunch of oranges for our fresh squeezed juice.

Now when I go to the store and see oranges on sale for $2.50/lb I can't believe my eyes! I picked a couple of pounds of oranges every morning, and the morning I left, I picked over fifty pounds of oranges so my mom could squeeze and freeze fresh orange juice. It took me about 30 minutes or so to pick that many oranges, so why does it cost so much money to buy them? At $2.50/lb, I picked about $125 worth of oranges in about 30 minutes, and I'm not very skilled at picking either. Do you think we picked all the oranges from the trees? Not even close! I picked less than 10% of the oranges on one tree. I love oranges and will continue to buy them (somewhat reluctantly) at the store, but I will always remember those two oranges trees, the tangerine tree, and the grapefruit tree that sat quietly in the my mom's backyard, providing shade, and a free and tasty breakfast.

Gregg