Post Surgery Update

Nate had his Colon removed on April 22nd. As far as surgeries go, it was a smashing success. Considering how sick Nate has been this past year, his quick recovery has truly been a miracle. His surgery was on a Monday and the surgeon told us he would likely go home the following Friday. Imagine our surprise when he went home Wednesday afternoon! We were told that our surgeon, Shauna Williams, is the best at this type of surgery. Having nothing to compare it to...we feel like she is the best too! She was able to complete the procedure as a laparoscopic surgery (four small incisions instead of one long one). This type of surgery is less invasive and usually ensures a much faster recovery. I don't know how it was physically possible to remove an organ that is approximately 5 feet long and 3 inches in diameter from those small holes, but she did it. It is absolutely amazing to me! It conjured up images of a magician pulling a long string of colored, attached hankies from his jacket! 

 

After his surgery, Dr. Williams told me that his colon was so diseased that it looked like hamburger and that it REALLY needed to come out. It was yet another confirmation to us that removing the colon, while drastic, was the right thing to do. Again, I am so thankful to Heavenly Father for leading us to make this decision, helping us find the right doctors, and providing for such a fast recovery.

 

I WAS disappointed that he wasn't *hilarious* coming out of the fog of anesthesia. I had my camera all ready to record some silly antics. He was just really sleepy and kept saying sorry that he couldn't keep his eyes open.

 

On April 20, the Saturday before the surgery, we decided to have a big ol' party. We called it Bum Voyage and did it open house style so friends and family could come and stop by. We had some samples of the ostomy bags and some diagrams of the actual surgery for them to see. There was a lot of poop talk...but we wanted everyone to be comfortable asking and to not feel odd around us, especially post surgery when he has this gurgling under his shirt from the ostomy bag. The day before the party, it rained, so we were a little worried about the weather, but we were blessed with perfect 65ish degree weather for the event. It was so fun to see family and friends we haven't seen in a while. Preparing for this party was a great way to just take our mind of off the worry and fear that come with preparing for major surgery. 

 

Here are a few pictures of the event (Owen was my photographer for most of these. I think he did a pretty good job!):

Owen and Bailey - they have been friends since they were born, but hadn't seen each other in a few years. It took them a while to warm up...but they were inseparable by the end of the party.

Our "colon" cake! My friend Tammy made this for us. She did a great job - and it was delicious!

My sister Mariah and our cute niece.

Audrey and friends

I don't know what the deal is with the horns. He was doing it all day!

Our friend Carmen and her darling (chunky!) baby Elaine

The infamous swing was also a hit!

Kiddos of our long time friends, the Melanders (they just moved back from Alaska in the last few months. We are so glad to have them back!

 

The party in full swing.

More party goers.

 

Our nephew Taylor.

I can't say enough how truly thankful I am for the love and support we have had through this experience. Our family, friends, and ward family have been so helpful. The windows of heaven have truly been opened for us. We had the missionaries over for dinner last night and they shared this scripture with us from Mosiah 18:8-10:

 8 And it came to pass that he said unto them: Behold, here are the waters of Mormon (for thus were they called) and now, as ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another’s burdens, that they may be light;

 

 9 Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places that ye may be in, even until death, that ye may be redeemed of God, and be numbered with those of the first resurrection, that ye may have eternal life—

 

 10 Now I say unto you, if this be the desire of your hearts, what have you against being baptized in the name of the Lord, as a witness before him that ye have entered into a covenant with him, that ye will serve him and keep his commandments, that he may pour out his Spirit more abundantly upon you?

It reminded me of all of the blessings, love, and support we have received (and continue to receive) during this difficult time in our lives. There are many, many people who truly have been His hands here on earth. They have born our burdens, and the burdens have become light to us. They have mourned with us, they have comforted us, and have truly been witnesses of God at all times, in all things, and in all places. They knew what we needed, and just served us. From meals, to yard work, to homemade cinnamon rolls and bread, to visits, to taking our kids, to bringing me lunch at the hospital, etc. I can't even imagine how we would have handled this experience without this love and support. This is truly what we have needed at this season in our lives. It has made us want to be better people. It has made us want to pass on the feeling of love and support that we have felt.

This surgery is the beginning of the end...but isn't the end yet. Nate will have two more surgeries over the next few months. The next one will be Septemberish and the final one will be in November or December. We look forward to the end of 2013 when we can (hopefully) finally move on from these health issues and see what the future holds for our family.

The Plot Thickens

In my last post, I shared the issues that we have been going through with Nate's illness.

At that point, there really wasn't an end in sight. We were in a "waiting mode" with his health issues. His UC continued to flare and his gastro-doc was attempting to treat that. Meanwhile we had just found out that Nate has a genetic mutation with his blood called Factor V Leiden that makes him susceptible to blood clots (UC and some of his medications are also risk factors for blood clots). At that time we were also waiting for a second scan on his leg to see if a deep vein blood clot they had found had moved. The results of that scan would determine if he would need a "minor" procedure to put a filter in a vein to catch any clots that formed from moving and causing more problems (i.e. death!). Because of his UC, they couldn't just treat him with blood thinners because he was bleeding from his colon and has been severely anemic.

Fast forward a few weeks...

Nate started feeling a tightness in his arm that felt similar to the tightness he noticed when they found the original blood clot in his leg. When we had the second scan that we were waiting for, he asked them about his arm and were able to scan that at the same time. During that scan they found blood clot number two that ended in his armpit - another deep vein clot. They sent us immediately down to the hematologists office. After some discussion, we determined that the bleeding risks from UC were worth treating him with an anti-coagulant right now, but agreed that it wasn't a permanent fix. Basically they told us that UC won't kill him right away, but a blood clot could, so they thought the best option would be surgery. Meanwhile, I feel like I am living with a ticking time bomb that could fall over at any minute with a pulmonary embolism or stroke. The doctor told us to watch for bleeding, shortness of breath, and chest pains. It has become a joke that every time one of us leaves the house I say, "Call me if you feel short of breath." If I can't laugh...I'll just cry.

Where we are today...

Through much research, prayer, and the advice of our slew of doctors...we have decided to have Nate's colon removed. This is scheduled for April 22nd. We met with a surgeon last week and determined that based on his current situation, they are going to do the procedure in 3 stages:

1. Right away: Remove his colon, staple his rectum closed, create an ileostomy (and start using a fun colostomy bag to collect waste)
2. 4-6 months later: Remove the rectum, take down the ileostomy to create a pouch and put it in place of his rectum, create a new ileostomy
3. 2 months after that:  Take down the ileostomy and connect the small intestine to the pouch.

Eventually, (so I've read) he will have a semi-normal digestive cycle - and (hopefully) won't have diarrhea forever. This is a concern because one purpose of the colon is to "dehydrate" your waste before it leaves your body.

Sorry to be so graphic...but colons, rectums, diarrhea are a major our life right now! It would be impossible to talk about this situation without a little bit of poop talk. That's just the way it is!

Anyway...removing his colon right away will actually cure the UC and allow the hematologist to aggressively treat him for his blood clots. Once he is fully healed from the surgery, removal of his colon will hopefully get rid of the pain, fatigue, anemia, and YES, diarrhea that has plagued him for what feels like forever.

The bright side...

Financially speaking, timing of this surgery couldn't be more perfect. We will be able to fit in all three surgeries in 2013 and we have reached our max out of pocket for Nate's insurance plan. This means that all of these extensive surgeries will be 100% covered. I feel like this is an example of the windows of heaven pouring out a blessing that there is not enough room to receive it. We feel so blessed.

The other bright spot is that we now have a treatment plan. No more trying this and trying that for his UC and waiting for it to work. I'm not very good at not knowing what is going on or not knowing what is coming next. Having a plan, as difficult as it may be, will help me sleep at night!

Right this second, I feel like it is going to get worse before it gets better. He is weakened and the medications he has been taking are immune suppressants, so he may be slow to heal. I don't really know what to expect, but I know that Heavenly Father is keenly aware of our situation. I feel so blessed to have the love and support of family, friends, church members, co-workers, etc. All of these people are angels here on Earth that I know will help us through the next few weeks/months - and with all of the subsequent surgeries. This is a huge blessing and comfort during this time.

I love my Nate so much and I hope and pray that this surgery will allow him to get his life back! Thanks to everyone for your support!

A blur...

I haven't blogged in what feels like forever. Crazy enough, it has been almost a year. This year for us has been a blur. If you have a minute (or thirty), please continue reading to find out why...

A few weeks ago, we got a visit from a member of our bishopric and one of the high council to see how we were doing. We shared the story I am about to share with them and were counseled to write it down so that someone can gain strength from it as we have.

Here goes...

About 5 years ago, Nate noticed that on and off he was bleeding when he went to the bathroom. Knowing that wasn't normal, he had some different tests done that led him to getting a colonoscopy. With the results of the colonoscopy, he was diagnosed with Ulcerative Colitis (UC) (Google it...it is some horrible stuff), which is an autoimmune disease that presents with ulcers in the colon and severe diarrhea (among other things). There is no cure and it is likely hereditary. At that time, it seemed to be just a small issue in the left side of his colon and he wasn't experiencing any pain, just occasional issues with gurgling in his digestive system. He was prescribed some drugs and the blood stopped. Over time, he would experience "flare ups" where he would bleed again or have other digestive issues, but he could take prednisone for a week or so and be fine again for months.

Fast forward to March 2012...Nate started having another flare up. This time it was the worst it had ever been...pain, digestive issues, large amounts of blood, fatigue, weakness, vomiting, etc. He was miserable. He took drug after drug with little, if any, relief. He had a colonoscopy in June, where it was discovered that the UC had progressed to the point where he now had severe inflammation in his colon, ulcers throughout, etc. The doctor decided to put him on an aggressive medication, called Remicade, that some people with this condition considered a miracle drug. These are administered through an IV infusion every 8 weeks (side note: this is about $5,000 each time he has an infusion). He has been on this since July 2012, and has not experienced much relief from his symptoms at all, and he has lost about 50 pounds from lack of appetite. Most recently, they have doubled his dosage ($10,000 now!) and increased the frequency. We haven't seen improvement, but are hoping it will come soon.

At this point, he has good days and bad days, but basically for almost a year now he has been sick, exhausted, and generally not able to function and do the things that he normally enjoys. The flare up just has never ended. There have been a lot of holidays, events, and other functions that he just can't make it to because he is just too weak, in too much pain, too sick, etc. In addition, we have lived through multiple fun things like a blood transfusion due to severe anemia, blood clots, severe joint pain, cat scans, etc.

So that's the story. I've got a sick hubby and there are some days we are lucky to hold everything together. Some days, I feel like a single parent. Boo hoo...right?

As bad as things have been this past year, I hope I can put into words the overwhelming sense of gratitude I feel for how much the Lord has blessed us and prepared us to be able to handle this. Here are some of those things:

Nate and I had always hoped for the "perfect Mormon family." In this scenario, I am stay at home mom, we have tons of kids, a minivan, Nate has some amazing job, a huge house with a basement and a large yard etc. We do have the minivan, but everything else is a bust. Through this experience I realized that if we had that "perfect Mormon family" this condition would be devastating to our family. For example, Nate missed a lot of work last year and he used all of his vacation and sick time long before the year was over. As a result, some of his paychecks were microscopic. One of those occurred around Christmas time. Had we not been prompted that I should go back to work a few years ago, this would have been devastating for us. Instead, it was a blip on the radar.

Another item...tons of kids. The reality is that I can't even imagine dealing with several kids, maybe a toddler or a newborn during this time. Our kids are 5 and 7, so they are pretty independent. They are potty trained, they can take a bath or shower without help, they can make a sandwich. Some days, they have had to do all of those things. They also, about 80% of the time, get a long very well. They are best friends. This independence and camaraderie that the share has decreased our level of stress significantly during this time. We have always wanted more kids, but it just wasn't happening. I was sad, but I never felt prompted to look at adoption or fertility treatments. There were times I felt guilty because of that. How could I be a "Mormon Mom" with two kids? How could I be so selfish? During this trial with Nate's illness, I FINALLY came to the realization that this "perfect Mormon family" does not exist. I am totally at peace with our two kids. I do not feel that there is another child waiting to come to our family - and I am okay with that! Heavenly Father knew that this trial was coming and prepared us by NOT blessing us with with a large family.

We always wanted a house on some property with a shop, maybe a go-cart track, etc. If we had some huge yard and toys to take care of, during this illness it would have caused some serious additional stress. Instead, we bought our small house at the peak of the housing boom and are TOTALLY underwater. Yay! Some might say that we are "trapped" here, but through this illness, we are so grateful that we are living in our small home with a manageable yard. The only regret is that it only has one bathroom. Seriously? Who has only one bathroom. The Wall Family...that's who. Blech.

Another huge blessing is that Nate has always wanted to work with the youth at church. He was called as Cubmaster before this all started happening. He loves this calling and loves to go all out with theatrics at the Pack Meetings, which required a lot of energy from him. As his condition worsened, he was concerned that he wouldn't be able to fulfill his calling. He received a priesthood blessing where he was promised that he would be able to fulfill his calling. As a result, prior to each pack meeting, his symptoms subside and he has been able to successfully complete his pack meetings. It takes him a few days to recover, but he somehow has the stamina to make it through something that he physically cannot do at any other time. This has strengthened my testimony of the priesthood immensely.

We have been blessed with a supportive ward and an amazing group of friends that will help us at the drop of a hat. We have had surprise meals, visits, people doing yard work for us, etc. While it is difficult to accept help, it has been so appreciated. We have felt so loved. It is amazing what even a simple hug or smile can do!

Finally, I'd like to add how much this trial has improved our marriage. We both feel that our relationship has been strengthened as we have lived though (and continue to live through) this trial. We depend on each other more, we help each other, and we have laughed through it! When things are hard, I'm so thankful to have an eternal companion by my side that makes me laugh and gives me comfort when I need it.

I know that Heavenly Father is real and He has a plan for each of us. I feel like we are the poster children for that. Nothing in our lives has gone according to OUR plan, but we have been blessed to be able to look back and see His hand in so many things that have led us to this point. I know that if we even just try to keep the commandments, even a little bit, we are blessed far beyond what we could ever imagine. Our lives are a manifestation of that. I can truly say that I am happy and grateful for what this trial has brought into our lives.

Semi-annual Update

So far this year we have stayed pretty busy.

• Owen has been involved in basketball with the YMCA (which he loved!) and just started his soccer season back up. This will be his 4th season with his same coach and he is really enjoying it. He is a great little reader and is really enjoying 1st grade.
• Audrey is taking ballet and is loving it as well...when she feels like paying attention! Her favorite part is the dance recital. She loved wearing her costume, wearing makeup, and basically having all the the attention focused on her. She is such a smarty pants, but the poor girl has to wait one more full year for Kindergarten - dang late birthdays!
• I have stayed busy with this and that. Still working for Icon Credit Union and staying busy! We are so blessed with great help from family and an awesome sitter, so it continues to work well for our family. I have been taking Audrey "treasure hunting" on Saturdays to some area thrift stores. We have been amazed at our discoveries. I now have a semi-large collection of fashionable scarves and I don't think I have even reached $10 yet! We also got a great bike for Audrey for $12, and the list goes on and on. It has been a fun hobby.
• Nate is also loving his hobbies - he is now lucky enough to have turned his hobby into a church calling - he is the Cubmaster. We just had our first Pinewood derby! He built an AMAZING stand for the kids to stick their car on in-between races. Then he created an individual kit for each boy to put together that will hold all their pinewood derby cars (3) they make during their cubscouting years. He is really having fun and I think the boys are enjoying it too!

So that's about it at our house, for now! This past year has not been without bumps in the road, but we feel really blessed and grateful for the gospel, family, friends, health, and happiness!

See you in six months...

My Dad

A lot has happened since my last post. Nearly a year has gone. I don't know where it went. The most significant thing this year is that I lost my Dad on June 1, 2011. He had a heart attack in April 2010 and we were blessed beyond measure to be able to spend another year with him. I had never experienced the loss of a loved one so close. The day that it happened, I felt a sense of peace that I have never felt before or since. I felt enveloped in the arms of Heavenly Father and I knew that he was aware of me and my family. My testimony that families can be together forever was solidified as it became very real.

I always wondered how anyone could possibly speak at the funeral of a parent, yet I felt an overwhelming desire to do it for my Dad. As I read his journal and my Grandma's personal history, words flowed onto the pages of my notebook and I knew exactly what I wanted to say and how to capture and portray who my Dad really is. As I stood before the congregation, I was able to deliever my message. I felt power beyond my own and I didn't cry until the very end. For those who know me, that itself is a miracle! It was an amazing experience I will never forget.

The last few months I have missed seeing him, talking with him, and listening to him. I miss going to their house and seeing him in "his" chair. I miss telling him about my life and watching him light up as he tells me how good I am at everything, how smart my kids are, etc. That's just the way he was, always so positive. I enjoyed sharing accomplishments with him because he was my biggest cheerleader. Many people feel like they can never live up to their parent's expectations - I have never felt that. I have always just felt loved and I am greatful for that.

I especially miss my Dad on Sunday nights and at conference time because he always made biscuits and gravy for all of us. I am just so thankful for the gospel and the memories that I have. I am thankful for the special relationship that I have had with my Dad thorugh the years. I know that I will be with him again one day and that brings me peace and comfort.

For...ev...ur

I haven't posted in For...ev...ur. Life has been so good and crazy and busy. I have been back at Icon Credit Union full-time for almost a year now. I was offered a job as the VP of Finance and we decided to go for it! Right now we have an awesome set-up for babysitting and things are working well. We have definitely settled into a good routine. Our situation may not be best for everyone, but we know it is the best for us at this time.

So what has happened since April when I posted last. I will not bore you with a lot of details, but here are the highlights:

• Owen turned 5, played soccer this summer/fall, and started Kindergarten and LOVES it! He also lost his first tooth this past week.
• Audrey turned 3 and is full of joy and excitement and DRAMA! She was finally potty trained this summer, which has been wonderful. No more diapers!
• Nate and I celebrated our 10 year anniversary by taking a cruise to Alaska. It was a once in a lifetime experience. We have many cherished memories of that trip. We totally missed the kiddos though.
• I'm working full time at Icon and really enjoying the challenge and adventure.
• Nate is still working for Motive Power and enjoying that as well.

To stay more up to date than every 8 months, I do update Facebook and a semi-regular basis. I need to be better at chronicle-ing our lives on this blog if for nothing than just for our posterity!

...an update...

Blogging...hmmm...

I just haven't felt too creative lately. We've been busy. I can't think of any cute one-liners or funny ways to share what we have been doing, so here are some pics:

I'm back at work full time - and loving it right now. I made a commitment to go back until June 30th, with the option of making it permanent. I haven't decided yet what I am going to do, but so far it has been great. I have a great babysitter and Nate has been so supportive and helpful. We will see what the future holds for our family...