Counting Our Blessings

Counting Our Blessings

Thursday, May 18, 2017


So we are all set for Surgery this Friday at 3:00p.m..  The last few days have been hard as the anticipation of this surgery is heavy on our minds.  My surgeon told me that they will have to test the defibrillator once it is implanted.  He also mentioned that there is a chance that it wont work because of interference with my current pacemaker.  They believe this was the issue with the last surgery.  If this were to be the case they will need to surgically remove my current pacemaker and set the pacer/defibrillator combo.  Its hard, tricky, and causes fear for a lot of complicated reasons that are hard to explain.  

Our biggest prayer is that the defibrillator would work, the lead will connect to my heart with no issues and all will go better than we could have asked.  We are also hoping this recovery will go smoother than the last.  It’s been a long 8 weeks and I’m just very ready to be on the other side of things.  Grateful for the last few days to feel somewhat back to my old self.  Below is a song that I have been listening to this week. Hope it blesses one of you.

Monday, May 15, 2017

Disappointing News

Well we were all set for surgery tomorrow and just got a call an hour ago saying that the surgery needed to be cancelled.  St. Joseph Hospital did not have the correct lead wire that my surgeon needed to perform the surgery.  This is a huge disappointment because it takes so much work to coordinate kids schedules, and Jason’s work.  They are looking at Friday of this week.  Please pray for us as we are just trying to hold it all together at this point.  We are tired, and fearful, and ready to get this all behind us. Pray that God would meet us in these moments.  Pray that we would hold strong to his truths.  I pray that we would relish and remember the beautiful ways he is working out his plan through even these hard moments.  Thank you for continuing to shoulder with us.  We appreciate each and everyone of you.

Friday, May 12, 2017

Hard Recovery

So grateful beyond words for all the texts, cards, flowers,gifts, meals, visitors etc. over the last few weeks. This has been a really rough recovery.  We did not expect things to go this way and are nervous heading into the next planned surgery.  Yesterday we were advised by my surgeon to go to the ER to get checked for infection because I was developing flu like symptoms and not getting better. After spending seven hours in the ER they did not find anything. Their best guess is that its most likely a reaction from all of the heavy antibiotics I have been on from my last two surgeries.  I had a rough morning today but by the afternoon I finally started to make a turn for the better. I even got out for a walk and enjoyed the fresh air and the warmth of the sun. Praise God!! We are hoping this continues.  Please would you all pray that I would feel good enough to have this surgery on Tuesday.  They will be implanting a defibrillator.  It’s a much needed surgery and I’m ready to get this all behind me and on the other side of things.  I Cannot even express to you how grateful I’am for an amazing church body who just enters in to the pain of others in the most beautiful of ways.  It’s overwhelming how beautiful it is to be so cared for.  Please forgive us for not responding to texts or messages right away and know that we want to, we care, and we are so thankful.

Thursday, May 4, 2017

Information overload

So I have been told over and over in the medical community how special I'am, how rare my condition is, and how I don't fall into a regular category. My case is unique they say.  Unlike any other they say. Isn't that true of us all though. I mean We all are special because we were created in God's image. Each one of us a true miracle. Our lives have purpose because of our Maker. We were born with a purpose.  Because of the Lord's hand and new advances in medical technology I have gotten to be a wife, a mom, a friend, and share Jesus with so many. 

Twenty years ago my heart journey started. I started passing out. I had several fainting episodes. Thanks to great insurance I was able to have a myriad of tests in a total of two weeks ultimately leading them to discover that I had complete heart block. The only way to keep me alive was to put in a pacemaker. So crazy to look back at all of that and see God's faithfulness over the years. How he has sustained me. They put my first one in at the ripe age of 19.  I would go on to have two lead failures which led to emergency surgeries with new leads placed in my heart and new pacemakers. Making this a total of three. Because I'm fully paced 100 % of the time my battery is only good for 6-7 years. I had my fourth pacemaker surgery 2 1/2 years ago.  Hope your all keeping up😏 it's a lot.  

This last year I have had a ton of pre Ventricular beats and small Ventricular Tachycardia beats.  That small pacemaker in my body records all heart activity. It's unbelievable technology. It amazes me. They have adjusted my pacer with no luck of stopping the episodes. After my 20 min short g- tube surgery my heart was in distress causing my cardiac enzymes to be elevated. They are still not clear why. Like I said I was only under for 20 minutes.  Two weeks later I had a Ventricular Tachycardia episode that caused me to black out for a few seconds. At my Cardiologist appointment they picked up from my pacemaker recording that the V-tach episode lasted for 11 seconds at over 200 beats. Super Scary!! How you all doing? Still with me?  You all are going to be heart pros after this. The doctor grew concerned at this point and had to take everything into account.  My muscular dystrophy, me being completely dependent on my pacemaker etc. After discussing my case with several doctors familiar with my history they landed on the safe approach to put in a subcutaneous Defibrillator. They did not want to take any chances of a longer more dangerous Tachycardia episode occurring.

Well that surgery took place last week and did not go well. I left the hospital with the battle wounds and no defibrillator 😞After they put in a defibrillator they have to test it to see if it will work. They put your heart into V-Tach and the defibrillator should shock the heart. It sadly did not so they had to use the paddles. You know those crazy things you see on TV when they are trying to save a persons life.😳 Yep they used those! They did this a total of four times and the defibrillator never kicked in. It was mis reading my pacemaker. So at this point They made the decision not to keep me under any longer. They had to sew me back up with no defibrillator. The surgery that was suppose to take 2 hours took four and instead of a defibrillator sewn into my body I got fitted with an outside "Life Vest". Think uni bomber. It's a uncomfortable tight vest that is a external defibrillator.  It's there to protect me should an episode occur.  You could say My best friend for the moment. To say I was disappointed about the surgery was an understatement. I was tired, sad, and did not want to hear that more surgery was in my future. At the same time I was alive, my brain was working, there were no other complications, and I could still cry out to the Lord. All things I will never take for granted. 

Yesterday we met with my amazing Doctor who has basically lost many hours of sleep studying my case and talking to all the top doctors in this field. I'm so grateful for this man. He discussed two options with us. One option was to remove all of my leads and start new on the left side with a pacer/defibrillator combo. Super high risk for lots of complicated reasons with many doctors who are very uncomfortable with this option. It may be needed in the future but they all agree to put it off for as long as we can. Option B was to leave my pacer and the leads that are on the right alone and to just put an additional Pacer/defibrillator combo on the left running another lead to the heart. This is the plan we are going with. So I will now have two pacers. The kids think this is funny and cool all at the same time.They are calling their mom a Cyborg. The TSA's are going to have a field day with this I'm sure.  The reward will be that if the pacer on the right should go out or a problem with a lead occur we will have a back up. We will also have a much needed defibrillator keeping my heart from going into potentially deadly v-tach episodes. All very good things.

There are risks with this surgery but they far out weigh the other option. We feel good. We feel relief. We feel thankful for life saving medical equipment.  We feel ready to get it all behind us. It's been a hard last few months. Like always we see God's beautiful hand in it all, he's allowed us to minister to people through it, he's worked through his people beautifully as they have ministered over and over again to us.  It's because of this that we stay strong, it's because of this that are kids are doing amazing through it.  Keep praying and keep trusting. These 20 years are proof that God is so mighty and sovereign and works beautifully in all things.

Monday, April 24, 2017

Trying yet again to surrender it all

Being satisfied in God (or anything) always seems easier when all is going well. But when things you love are being stripped out of your hands, then the test is real. If God remains precious in those moments, then his supreme worth shines more brightly. He is most glorified. -John Piper

For those of you who have been following my blog for sometime know what a big John Piper fan I am.  He has been a huge encouragement to me in some of my darkest moments.  He constantly reminds me that it’s not about me, he reminds me that God is not wasting any of my suffering, and he reminds me that God loves to bless his children.  Oh how I need those truths repeated to me over and over and over again.  Why do I need to hear them again and again?  Because we forget.  We retreat inward and we allow ourselves to focus on our circumstances.  we focus on what they are doing to us instead of focusing on what HE is doing through us.  I once again have to make the choice of letting go of control, and fear, and doubt and surrendering it all to the Lord.  It’s not easy but I know the peace and joy that comes when we are fully able to rest in him.  I need your prayers that I will once again be able to do this.

This Thursday I will once again go in for surgery.  My heart is getting weaker and the doctors feel like the best plan is to put in a subcutaneous Defibrillator.  So that is the plan.  Our biggest prayer is for a successful surgery with no unexpected surprises.  My heart went through some stress after my last surgery and we are praying that the Lord would protect my heart.  Would you all say a prayer for Jason as he watches his wife once again get wheeled away for surgery.  pray that the Lord would meet him in the sweetest ways.  Pray for our kids that they wouldn’t feel anxious but would rest in knowing that the Lord is watching over their mom.  I’m filled up knowing that in the days leading up to surgery when I’m feeling depleted you all are lifting us up. Thank you for that.  You all don’t know what a gift that really is.

Thursday, April 13, 2017

Another bump in the road

Thank you so much for all your encouraging words regarding our videos.  It was fun to get the kids involved and give you guys more insight into my surgery and also how Noah is currently doing. 

 I’m writing to ask for your prayers once again. We were feeling hopeful after my surgery with how well the feedings were going and the increased energy. It was so nice.  We unfortunately have come to another bump in the road and its pretty big.  After my surgery while I was in the recovery room I started having pretty intense chest pains.  The doctors were concerned and ran some tests.  The tests showed that my troponin levels were elevated. A Troponin test measures the levels of troponin proteins in the blood.  These proteins are released when the heart muscle has been damaged, such as occurs with a heart attack.  The more damage to the heart, the greater the amount of troponin in the blood.  A normal level is .10 0r lower and mine was .395. They ran several tests to check for blocked arteries etc. and determined that I most likely had inflammation around the lining of my heart.  I was to follow up with my cardiologist.  On March 30th I had a black out episode that lasted for a few seconds and took me by surprise.  I saw the doctor a few days later and he was able to pull up my pacemaker recording that told him on that day I had a Ventricular Tachycardia episode that lasted 11 seconds with my heart rate in the 200’s.  This could have led to me going into cardiac arrest if it was a longer episode.  Because of these incidents the doctors want to put in a cardiac defibrillator.  This is where things get tricky.  I have a pacemaker and four lead wires in my heart.  My arteries can not fit any more wires on that side.  Lead wires have an average life span of 12-15 years.  I have had mine for 12.  They might have to consider lead extraction surgery but it is high risk. My muscular Dystrophy is high risk just going under anesthesia.  There is a team of 4 doctors all consulting one another on the best approach and we will talk about the best plan this Wednesday. Surgery will most likely take place at the end of the month.  This has felt intense and emotionally depleting.  It didn’t help that a few days ago I had another bad fall either. Yep! Scraped up my elbow, bruised my knees, my ego lol., and have felt the aftermath in my whole body.  I seriously have considered buying and wearing a rubber suit.  Too many hard falls. It stinks. But you gotta get up, dust yourself off, and keep pushing through.  It also feels good to let out a scream, put on some good music, and laugh at the ridiculousness of it all.  

We all have a story. The one God writes for each of us may go down many paths. No matter where you are on the journey, there is a plan and a purpose to what you experience. If you are struggling, take comfort in knowing you are not alone.  It is hard enough to walk through pain and suffering but if you don’t have Christ none of it will make sense.  I urge you to put your faith and trust in christ if you haven’t already.  Only he can give you purpose, only he can help you make sense of it all. The greatest truth that you can ever hear is that Jesus Christ died but rose again, and that you, too, will die but can rise again into newness of life.

Please pray for us friends. Pray for all the doctors involved, Pray I would not have any more episodes and that God would protect my heart. Pray for Jason and our family that we would lean in to God as we walk through another bump in the road. I know God is not surprised by any of this and that is where I draw my comfort.  We will keep pressing on, we will hold fast to his promises, and we will bless his name in the process.  

Tuesday, April 4, 2017

Blog Update With Noah

I had some fun doing an interview with Noah.  Lets just say we are both not as natural or as comfortable as Jonah. There were many edits but we managed to pull it off.  We hope you enjoy the update.  Jonah is begging me to do another video with him so comment below what you would like us to talk about.  We would love to include your questions.  As always thanks for following us on this journey.