Saturday, June 24, 2017

Faith's Summer So Far

Despite the fact summer officially began only a few days ago, for us, it feels like it actually began in May. Since we've begun to have such wonderful weather, Faith has been wanting to get out and about, which has been fun for the whole family. In early May, the three of us ventured to the river where the boats, dandelions, and motorcylists were all out in full force.

Enjoying the great outdoors!
The banks of the Missouri River - one of Faith's favorite places!
Besides going to the river, the library, and elsewhere, Faith has also enjoyed spending some quality family time at her Grandma and Grandpa's. On Mother's Day we enjoyed our first official barbecue of the year. Faith enjoyed getting to know my sister's dog, Snickerdoodle, aka Snickers, a little better. He is such a good dog and quiet too, which is why Faith likes him!

Happy Mother's Day to me!
My sister Dawn and I along with our mom!
Faith's new favorite dog is Snickers!
Toward the end of the month we made our way to our first ever visit at Gillette Children's Hospital in St. Paul, MN. Here we saw a doctor who told us (much to our relief) that since Faith is not in pain, there is no need to do surgery on her left hip at this time.

We were scheduled to go back at the end of this month for one of their specialty clinics where a team of pediatric specialists will be able to evaluate the amount of spasticity she is having and find some ways to decrease her tone. Since the referral process has been slower than we anticipated, however, we needed to reschedule for mid-August.
Faith cruising around in Minnesota!

Scenic view in Rogers, MN where we stayed
Sometimes I feel like my whole life revolves around making phone calls and getting paperwork in order, not just for her but me as well! Earlier this month, I saw my cardiologist who comes to Bismarck every three months from the Mayo Clinic. I am still retaining a bit of fluid so he tried to put me on a second diuretic, along with the one I'm already on.

During the 8 days I took it however, I came down with three migraine headaches and didn't feel well in general. I'm so glad I have a doctor who quickly answers my e-mails because after sending him a message regarding the new medication, he told me to stop taking it for a week to see how I feel. I'm hoping the medication was the culprit and I can discontinue taking it -- the fewer meds the better!

Of course June also means celebrating Father's Day and so we had an early celebration at Grandma and Grandpa's to honor my dad, my husband, and my sister who pulls double duty as a single mom. Two of my nephews, who are also dads, were there as well, and we got to meet to the newest addition to our family -- little GracieLynn. On the actual Father's Day, the three of us had a perfect day at home relaxing, watching movies, playing video games, and calling our dads.

Faith with her dad and grandpa
My dad and I
Faith with grandma and her two baby cousins - Marla and GracieLynn
Faith and I have also been getting back to another of her favorite summer activities -- spending time on the patio. No matter how windy or cool the weather is, she is still determined to sit down there. She has fun laughing at me when the wind causes something to blow away and I have to go chasing after it. We also have fun watching the birds, and every once in a while, we spot a bunny and a gopher or two.
One of the cooler days on the patio - and that's not a bug on her face, it's chocolate! She enjoys her snacks!
Unfortunately, it has been hot and windy and in early June, we nearly hit 100 degrees, which it usually doesn't do until July or August. The entire state is having drought conditions and in much need of rain. There was one day however where we did get a nice shower of rain and with it, a double rainbow! Faith had been asking when we were going to see a rainbow in the sky so she was very excited. I took this picture, but there were other photos on Facebook that showed it was a full double rainbow, which always gives me a renewed sense of hope that God will fulfill His every promise. 
Double rainbow - double blessing!
Our family has gone through some challenges, some related to my health, some related to raising a 13-year old girl and all of the hormone-related things that go along with it, and others regarding some personal things that have affected us. Through it all, I continue to cling to His faithfulness and this promise in God's Word: Understand, therefore, that the Lord your God is indeed God. He is the faithful God who keeps his covenant for a thousand generations and lavishes His unfailing love on those who love Him and obey His commands. Deuteronomy 7:9

Saturday, April 8, 2017

An Unexpected Hospital Stay at the Mayo Clinic

At the end of March, I found myself heading east on I-94 with my parents, leaving my husband and daughter behind. An hour into our trip, my husband called because Faith wanted to talk to me. In near tears, she asked if I was going to be home soon. Oh my breaking heart. The last time I had been away from her for more than a day was probably about 9 years ago.

The reason for my departure had started back in January when I began fasting along with our church. In my journal on that first day, I had written that I wanted God to reveal any internal problems or heart issues I needed to deal with. I was speaking of spiritual issues, but in His goodness, He also revealed some physical problems that needed taken care of.

During the fast I became extremely fatigued and didn't feel well at all. I began having chills and my husband encouraged me to start eating solid foods. I began eating soup, oatmeal, and other easy-to-digest foods, but none of it made me feel any better. Eventually, I lost my appetite altogether. One of the strangest symptoms, however, was that instead of losing weight, I looked like I was gaining. My abdomen had become enlarged and by the end of January, it felt hard as a rock.

I saw my doctor at the beginning of February. She did labs and x-rays and had also ordered at CT scan, which showed the fluid buildup was being caused by my liver. As soon as I heard the news, I wondered if it could possibly be related to my heart. I knew that patients born with a single-functioning ventricle who had the Fontan surgery were at risk for liver problems.

Speaking at Java JOY
I had to wait until March 1 to see a cardiologist from the Mayo Clinic who specializes in adults with congenital heart defects and who comes to Bismarck. He was convinced my liver issue was indeed cardiac related and wanted me to go to Rochester for more tests. I had to wait until the end of the month before my appointment was approved by insurance. 

In between that time I said a lot of prayers, had a lot of people praying, and by the grace of God, was even able to fulfill an obligation to speak at Java JOY. I spoke on Psalm 103 where it talks about the benefits of being a believer, including the healing of our diseases. Despite my symptoms and how I felt, I was still determined to stand on the truth of God's word.

Finally, on March 29, my parents and I set out for Rochester. It was 3:30 in the afternoon by the time we left Bismarck and we ended up staying in St. Cloud, MN. The next morning we made it to Rochester and ended up eating lunch at the Canadian Honker Restaurant, where we had eaten together 18 years prior. While Dad rested at the hotel right across the street, Mom and I made our way over to St. Mary's Hospital.

Mom and I shortly after arriving in Rochester
To make a really long blog post a bit shorter, my doctor decided to admit me to the hospital so that he could do some further tests and get the fluid removed. I went back to the waiting room where my Mom was waiting and began crying when I told her the news. 

I hadn't expected to get admitted, and all I could think about was my husband and daughter and how they were going to handle me being away for longer than anticipated. Because of my emotional state, I couldn't even talk to Rob over the phone, so Mom told him the news. He was actually quite relieved because all he wanted for me was to get well.

After getting settled into my room, I found out they were also going to be replacing my pacemaker. So the next morning, after that procedure, I had a CT scan, and then in the afternoon 3 doctors came into my room to discuss a paracentesis. 

Mom and Dad had been in the room and after they were finished discussing the procedure, Mom asked, "and where will you be doing this procedure?" When we realized they were going to do it right there in my room, they bolted out of there pretty quickly! 

I was a little freaked out about the big needle going right into my abdomen, but was even more freaked out when they brought 4 one liter bottles into my room. I honestly didn’t think they were going to fill all those bottles. But they ended up needing 7 of them! They removed a total of 6.3 liters and I ended up weighing 15 pounds less than when I was admitted.

The next morning (which was Saturday) I had my heart catheterization. All of my pressures looked great, which was good news, but they still weren't 100% sure where the fluid buildup had come from. I was discharged that afternoon (April 2) and since my parents felt more comfortable keeping me close by after having 3 major procedures, we stayed over in Rochester and made it home late the next afternoon.

In going through all of this, I learned that liver problems are pretty much a guarantee for anyone having gone through the Fontan. I feel blessed that I have gone for so long (33 years after my first Fontan and 18 years after the revision), and not have any issues at all with my liver. I have learned this isn't the case for many Fontan recipients, and that some of them have liver problems right away, even as children.

I also know that no matter what the medical world says, I can still look to God my Healer. He can heal my liver and He can heal my heart - I have believed that for many years and will continue to believe it. That being said, there are times I need help from the medical community and am beyond grateful for my cardiologist, Dr. Cetta and the many other doctors and nurses that cared for me at the Mayo Clinic. I must say that for the most part while going through this medical ordeal, I had a lot of peace. Everything went so smoothly, and I knew God was working things out on my behalf.

Dad, Me, and Mom, before leaving Rochester
So thankful for these two!
I am also very thankful for the many people who were praying for me during this time, and also to my parents. They had just gotten back from driving to Lincoln, NE and two days later they were on the road again taking me to Rochester. 

In my book, Having Faith, I acknowledged them with these words, "My parents did everything they could during my childhood to ensure I not only survived but thrived. Over the years, they have put on thousands of miles, said hundreds of prayers, and hugged away many tears." These words continue to be so full of truth, and I seriously don't know what I would do without them. 

Rob and Faith did great while I was away. Faith cried a lot the first night I was gone, but after that she and Rob felt total peace. Whenever I called and asked how she was doing she would say, "We're doing great!" It ended up being a great bonding experience for both of them. God certainly worked ALL things together for good! (Romans 8:28) 

Tuesday, March 7, 2017

Birthday Fun!

FUN FACT: Did you know that on any given day of the year, 17.7 million people around the world are celebrating a birthday?

In my immediate family, my birthday in early February use to kick off the birthday season which would last through May. That's seven birthdays we celebrated in just a four-month time span! By the time we got to my mom's birthday, she was so tired of eating cake that she often opted not to have one. Now that we have a larger family with in-laws, nieces, nephews, and significant others, there are many more birthdays to celebrate, all throughout the year.

For those of us who live here in Bismarck, we have a great time getting together (usually at Mom and Dad's) to celebrate. It's kind of funny because after we get done celebrating a birthday, Faith will ask, "Who's birthday is next, Mom?"

Unfortunately, this year on my birthday, I wasn't feeling the best but it was still fun to get together with family. One of the reasons I still wanted to go ahead with the party was because Faith had been looking so forward to it.

I'll be the first to admit, I don't do a beard very well!
The three of us celebrating my special day!
My sister Dawn and I
When my parents first moved here, Faith wasn't too gung-ho about going to their place for any type of celebration or holiday. Over the past couple of years, however, she has gotten to thoroughly enjoy our family get-togethers. I think it's because pretty much the same people show up every time so she's getting to know everyone better.

Faith helping her cousin, Justine celebrate her birthday
Faith LOVES it when baby Marla comes to the party!
Despite the fact her dad didn't want to have a party, she wanted to have a surprise party for him anyway. Well, Faith's version of a surprise party is different than most people's. On his birthday, Rob was out running errands so Faith wanted to decorate the apartment for him. We hung up red and blue streamers along with some balloons. Then she wanted us to "hide" and yell surprise when Rob came through the door.

When I saw him in the parking lot, I covered her up with a blanket (she was laying on the couch) and I hid behind the loveseat. I found out later it wasn't the best hiding spot because Rob looked up and saw me through the window, which is right behind the loveseat!

When Rob got to the door, Faith was giggling and laughing (she would never be able to hide from someone for real). Then, when he opened the door we both yelled, "SURPRISE!" And that was her idea of a surprise party, which was perfectly fine with Rob! The surprise we did manage to pull off was a "sushi cake." Faith's favorite part of a birthday party is blowing out the candles and since Rob didn't want a cake, I had to find something to put birthday candles in. It turned out quite well!

Rob's sushi cake!
The inside of the birthday card Faith made (with help from Janie)
The next birthday on the calendar was Grandpa's. He wasn't having a party but Faith still wanted to go to Grandma's. She told Faith that Grandpa would probably like to see her on his birthday, which of course turned into him having a party (although a very small one but complete with homemade pizza, burgers, chicken, cupcakes, and ice cream!)

Faith and Grandpa
I LOVE this photo of me, my daughter, and my dad!
Thanks Dad and Mom for hosting such fun birthday parties!

So even though Faith only has one birthday a year, celebrating other people's special day has become just as fun!

Wednesday, January 4, 2017

Holidays, Snow, and Saying Hello to 2017

It's hard to believe but the holidays have come and gone and once again we're saying hello to another new year. Honestly, I'm NOT going to miss 2016! I know I'm not alone when I say the previous year was quite a challenging one. I'm hopeful that this year will be much better!

During Thanksgiving, we had a family get together at my mom and dad's. My sister and her family were able to come up from Nebraska for the festivities. Neither of my brothers were able to make it, but for good reason, as they were both able to return work on the oil rigs. 

Faith celebrating Thanksgiving with her cousins
Me, Tesa, Dawn - sisters!
 Thanksgiving is a great reminder that even in the midst of tough times, there is always something to be thankful for. I continue to give thanks my parents and most of my family lives nearby and that I have enjoyed being in good health. I am also thankful we were finally able to hire respite care, and that we found the perfect person to work with Faith!

Shortly after Thanksgiving, both Rob and Faith took turns having really bad colds. It didn’t help that winter had arrived in full force. It's crazy that on Thanksgiving Day, both my nephews were outside in short-sleeved shirts, and the Monday after, we had our first major snowstorm of the season. 

My nephews, Donnie and Preston on Thanksgiving
A few days after Thanksgiving
The following week, we got hit again, but this time it was with a 3-day blizzard that shut down the entire city. Faith had been scheduled for a doctor's appointment but we couldn't go because the clinic she needed to go to had closed. Even if the clinic had been open, however, we would not have been able to get out of our parking lot.

The worst part of Faith being sick was that she had a really bad cough that was keeping her from getting any rest. We were going to try to get out of our parking lot to get her some medicine, but we heard it was best not to venture out. Thankfully, some friends of ours were able to get out in their 4-wheel drive pickup and get some cough medicine for her!

On Thursday, even though the temperatures were well below zero, we managed to get Faith to her chiropractor appointment, and then a walk-in clinic. Because her throat was so red and sore, they tested her for strep, which turned out negative. 

Faith is getting ready to face the frozen tundra.
The weather continued to be a major challenge all through December with a Christmas blizzard thwarting holiday plans for many people. We got another 12.5 inches of snow, making it the 4th snowiest winter on record in Bismarck. While we didn't have much planned, it did prevent us from going to my mom and dad's on Christmas Day. Instead, Mom had a small gathering on Christmas Eve where we ate our traditional meal of homemade pizza. It was a small but fun gathering and I even learned how to play a new board game - Apples to Apples, which my dad won! 

Part of our small Christmas Eve gathering.
My mom and dad on Christmas Eve.
On Christmas Day, Rob made it to church by himself. For a while it looked like the blizzard that had been forecast for days wasn't going to hit after all. It may have arrived later than expected, but it hit a lot harder than people thought it would. At one point while sitting on our couch, I looked out our patio door and couldn't even see past our balcony. The city once again shut down.

Because the snow was so incredibly heavy, even the snow plows were getting stuck. All that could be used to clear the streets were front loaders. My dad told me Bismarck had 350 miles of streets - that's a lot of plowing that needs to get done! Many people were stuck in their homes for 4 or 5 days because their street had not yet been cleared. According to my in-laws, our Christmas blizzard even made the news in Toronto! Earlier this week, Bismarck received another 8.5 inches, putting us over 50 inches, making it the snowiest winter on record. 

Besides all the challenges of the past year, and the harsh winter weather, my husband lost two of his uncles, and a family friend from the church in which I grew up, passed away quite unexpectedly. She was only 47.

Lots of snow!
I'm not sure what my dad would do this winter without his Bobcat!
Faith has the right idea - snuggling under her new blanket!
Despite the difficulties that 2016 held, we can still remember that God is on the throne. With Him, there is always a way - even when it looks impossible. I pray the year 2017 brings much hope and restoration, and that we all find something to rejoice in each and every day.