This Past Year

 Ingrid Faith

 1 month

 2 months

 3 months

 4 months

 5 months

 6 months

 7 months

 8 months

 9 months

 10 months

 11 months

Almost 1 year old

I have recently reflected on this past year since Ingrid is turning one.  This girl has been such a light in my life.  A light I've needed during some very dark moments.  When I found out I was in heart failure 2 months after she was born, of course it runs through everyone's mind, although I know they wouldn't ever say it to me, what if she would've never gotten pregnant to begin with?  Would she not have heart failure?  Of course that ran through my mind, you always go back and question things like that.  That would last a split second until I looked at Ingrid and knew beyond a shadow of a doubt that she is meant for great things and that she is here for a divine reason.

 I shared my story with my MOPS group in March and I went over a timeline of the past 15 years of my life and how I had seen God work in my life. While I was preparing for it, I reflected on events that had taken place, the decisions I made and what came from those decisions.  It is interesting how when we take time to reflect we are able to see God's hand at work.  And yet we still worry and fret over every little thing today, when we know He always has and always will have it under control.  

When we made the decision to have Ingrid I had some major reservations for the 4-5 months leading up to it.  We had 3 months to try because I knew I needed to go to WA to have her and that needed to be during the summer so Lane wouldn't miss school.  One month before we needed to try a calm washed over me and I knew we needed to do it and I had a peace that if it didn't work that I'd be content with just having 2 kids here on earth.  My cardiologist was more than supportive and he sat in the room and talked with me about it well past the time the clinic closed and I walked out while the janitor was vacuuming the waiting room floor.  I was ready.  

Fast forward to November 2013, we had just had Estelle's birthday party here.  Everyone had left and I just told Reese that I was going to test early.  I ran to the store got a test and it came back positive.  I cried.  Reese asked me if I was crying because I was happy or sad.  I said I didn't know, I was scared but I also knew that it was the right thing.  

My pregnancy went well, I scared some doctors around here because I have an ICD and I was pregnant, but they soon figured out that I was healthy and doing well.  No complications and I left at the end of June at 36 weeks for Bellingham.  I saw a cardiologist in Bellingham as a precaution, he said I looked great. I was induced on my due date and a few hours later Ingrid was born.  I had a totally natural birth and I must say I rocked that labor and delivery like I never had before :)  Ingrid was perfect and I knew she completed our family.  And then 2 months later I find out I am in heart failure.

Ingrid has brought so much joy to our family.  She was motivation for me.  I had to get better, I needed to watch her grow.  In the beginning I really didn't know how it would all turn out.  I'm not trying to be dramatic, but I had fear that I wouldn't see my girls graduate or be able to see my grand kids.  I know none of have that guarantee but it was a real fear for me.  But over time my mind calmed down, my cardiologists were confident and God gave me peace that it would all work out according to plan, just as it always does.  I would hold Ingrid a little longer than I needed to after she fell asleep.  I always fed her bottles and cuddled her instead of ever propping them. She is almost one and I still snuggle and feed her.  I held her just a little tighter and God used her to comfort me.  She rolled with everything.  I had to quite nursing over night because of all the medications I had to start and she just started drinking formula like nothing ever changed.  She slept well so that I could sleep well and she's always had the biggest smile that could take all my sadness away.

The past year has held fear, sadness, confusion and it's been hard on our family and marriage, but it has also held greater joy and greater celebrations.  I had to resist bursting into tears and high fiving the doctor at my appointment in March when I found out I was up to 40-45%.  My "over saddened" self also wanted to "over celebrate" my victories.  I recently told someone that I've taken on the Y.O.L.O. (you only live once) attitude... I was being silly, but seriously... I kinda have.  

I am thankful for the growth that has taken place, for the healing, and most of all, I am thankful for my munchkins here on earth and in heaven.  And how God had a plan with bringing Ingrid into our family and as we watch her grow through the years I know that will become more and more evident.

Matters of the Heart: Peace

I went to Anchorage last week for my recheck. I was feeling good, confident, peaceful. They did an echo and I sat through that 1/2 hour test very calmly. I met with my doctor and waited for her to tell me the number. Now I had told myself as long as I am in an upward swing I will be happy. I told myself, if I am in the 30's I will be ecstatic. The doctor came in, she told me that the echo read that it's at 38% and by her estimate it was around 30%. Yes! This is what I hoped for! But she thought the numbers should be higher... Okay. She continued on with my appointment. My physical exam looked good. She told me to get in contact with a heart transplant center. Not because I need one, but because I need to make these connections now, while I am "healthy." I left my appointment with such mixed feelings. I felt my joy was stolen from me. Maybe the doctor had a bad day and didn't "feel" like being quite as encouraging as she had before. Maybe satan saw an opportunity to steal my joy. In the last week I've had anxiety, so much so that my body shakes and my teeth chatter. I am being real right now, honest. Why? Because I have dark days and I need prayer. 

"God favors the darkest places so you can see His light the brightest." Ann Voskamp

I am reading "The Greatest Gift" by Ann Voskamp. It is a devotional book for Advent. It is a powerful book for me right now. So much truth is spoken and God shows up when I read it. 

Some days I have to try hard to seek Gods peace. Other days it comes easily. I know it's there for me if I just seek it.

"When you are brave, you give yourself the gift of facing and touching the torn places. The places where we're torn to pieces can be thin places where we touch the peace of God." Ann Voskamp

I have to allow these torn pieces of me to be touched by Gods peace. Beauty can come from ashes, but I have to allow that to happen.

"Faith is the gift of God. So is the air, but you have to breathe it; so is bread, but you have to eat it; so is water, but you have to drink it." D.L. Moody

This Christmas season my eyes have been opened to what Christmas really is. It has to be found, not bought or decorated. I am trying my best to find joy and peace in Christ this Christmas season.

Matters of the Heart: Choosing Joy

A sweet picture taken by my sister Michele in light of our families "Matters of the Heart"

Life is full of choices.  Not just those everyday choices, like whip or no whip on your mocha.  Heart choices.  Will I choose to love or be angry, be joyful or bitter, will I be brave or hold back on the chance I might get hurt.  Every day we make these choices and sometimes making the right ones is hard.

On September 30th I went into my internal medicine doctor here, our town doesn't have any cardiologists, so this is the closest I can get to that. I had been putting off this appointment.  I wasn't feeling terrible, I had been coughing for a long time.  That's part of living on this island, I feel like I've had a cold all year, germs like to fester here.  But my main symptom was that I was short of breath.  I thought, maybe my cold has really gotten into my lungs and that's all it is, but in the back of my mind I wondered if it was my heart.  And in the back of my mind, I knew.

Even the doctor thought it was probably nothing as I was sitting there telling him my symptoms.  Then he got me on the exam table and looked at my neck.  By looking at your neck a doctor can tell if you are retaining fluid, I was.  He got a little more serious at that point.  He ordered a chest xray, lab work, EKG and an echocardiogram.  And before any of those tests came back, he started prescribing medications.  My xray showed I had some fluid in my lungs, that explained my shortness of breath.  My labs showed an elevated BNP which indicates heart failure. And a few days later my echo showed that my heart function had gone from 45-55% last January, down to 10-15%.  Normal heart function is around 60% or higher.  I was shocked... those numbers are bad.  With those numbers you can be put on a transplant list.

I flew to Anchorage a week later to see my cardiologist as well as a heart failure specialist.  I left Ingrid with Reese and she drank formula for the second time in her short 2 months.  I got there and my doctors were beyond awesome.  They are calling it Peri Partum Cardiomyopathy, even though I already had an existing heart disease (link to my original diagnosis, another link, and for all other heart posts click on the Matters of the Heart tag).  And although 3 different cardiologist that I had consulted before getting pregnant told me that they thought I could handle another pregnancy, I didn't.  Sometime in late pregnancy or post partum, I developed heart failure.  The statistics are, 50% of women make a full recovery, 25% stabilize with good quality of life, and the other 25% continually struggle, possible heart transplant etc.

The thing is that my cardiologists were so incredibly positive.  They had a game plan, this included 6 new medications, as well as blocking prolactin in my body (what you produce while you're breast feeding) which can be hard on your heart.  Between all the medication and need to block prolactin, I had to quite nursing.  They did a physical examination and after my body was able to get rid of the fluid (thanks to some medications), I looked perfectly fine on the outside.  They told me that the heart function number is just one piece of the puzzle and the fact that I look good and feel good means that despite my heart function my body is able to compensate.  This doesn't make the heart failure part go away, but it's a huge blessing that I have a good quality of life.  I am able to do everything I normally do.  I have had to change some things in my diet, but those things have been a good change.  I have even been exercising 4 times a week.  So I am holding onto the way I feel and I am thankful.

I have a recheck of my heart on December 4th.  We are hoping to see ANY type of upward change in my heart function!  Please pray.

Michele's Hazel, standing by 5 hearts, representing the 5 siblings in our family.

So how do I handle this diagnosis, what heart choices do I have to make?  I have a newborn baby, I have a family that needs me, I am only 32 years old.  I have had a lot of people praying for me.  I know that God has placed certain people in my life to encourage, pray and surround me with love.  I know that God has prepared me for this with other life experiences I've had along the way.  I've been going to a bible study and we are studying the women of the bible.  We were studying Mary (Lazarus' sister) in Luke 10.  I have heard the story of Mary and Martha so many times, but this time it resonated with me in a new way.  In the story, Martha is running around making sure everything is prepared just so for Jesus and Mary is sitting at Jesus' feet, soaking in his presence.  When Martha complains to Jesus that she is doing all the work and Mary is just sitting there, this is Jesus' response.

          "Mary has chosen what is better, and it will not be taken away from her." Luke 10:42b

This verse means so many things to me.  Taken literally, I should choose to sit at the feet of Jesus and trust him.  But this verse also speaks to me in other ways, "Choosing what is better."  I have the choice many times a day to choose what is better.  Am I going to choose fear or peace, anger or love, bitterness or joy, busyness or calm, am I going to be present in this moment or always look to the next thing.  If I chose what is better, that cannot be taken away from me.  I will grow from those choices,  I will be blessed by them, others will be blessed by them and I will bring Glory to God through them.

I am trying to chose what is better.  I am giving fear to God and choosing PEACE.  I am giving up bitterness and choosing JOY,  I am letting go of anger and choosing LOVE.  Oh, I haven't always been successful at this.  Yes, I've yelled at my kids, I have nagged my husband, and at times my peace has given way to fear, I am human.  But the point is that this is what I am focusing on and this is my goal.

I have felt an urgency.  Urgency to embrace the present, be a better wife, mother and friend.  An urgency to be intentional in the way I live out my days.  If I choose what is better, than I can do all of those things.  Those moments and memories will not be taken away from me, my family, or my friends.  My mom died when I was 18.  I treasure the wonderful memories I have of her.  No matter if I die tomorrow or 30 years from now,  I want my kids to have wonderful memories of me.  So I WILL CHOOSE JOY!

What is an ICD?

So here are some pictures to help you picture what this thing is that I just had implanted in me. The first picture is me before the surgery, second was taken yesterday. I'm not sure how big the scar will actually be once the steri strips come off. The next ones are to show you how big this thing actually is. So it's not a pacemaker although it has that capability. It has one lead that goes into my right ventricle. It is looking for my heart to go into an arrhythmia (ventricular tachycardia) which it will then pace it out of. It is also looking for my heart to go into ventricular fibrillation, which it will then deliver a shock to get it into a normal rhythm. The fibrillation is what can kill you. So most the time I won't feel it doing anything! The goal is that I forget that it's even there. It was placed under my pectoral muscle so it shouldn't stick out of my chest, it's more of a recovery period but I think it will be better in the long run. I have the scar which sucks, but it's something I can deal with.

When we flew home from the Anchorage, I had to be patted down. I cannot go through the metal detectors because I'll just set them off and I couldn't lift my left arm up yet to go through the body scanner, so I was patted down. Something I'll just learn to expect when I fly. Apparently I need to stay 24 inches away from slot machines, weird. I have to talk on my cell phone on my right side, which is hard to do since I'm left handed. Otherwise I can do everything I once did. The ICD will be monitored every three months by a machine that is plugged into a phone line and it will communicate with a database. They monitor any activity it's had, battery life, etc. I only need to go into the cardiologist once a year. So living on a remote Alaskan island will be okay :) so that's pretty much it. I am glad it's over with and I don't have to look up against a surgery anymore. I am doing good, just need to take it a little easy which isn't always easy for me to do!

Home

We are home! I feel so much better! I have found that I do best just taking Tylenol! Anything more than that and my stomach hurts and I feel cruddy! I also have found that if I stay seated I feel much better. Walking around the airport and getting on the flight etc was tiring.

Lane is outside playing, Reese and Estelle are in the garage working out and Laura's making dinner. I am sitting on the chair, kind of a change of pace for me, I will enjoy it :)

Tonight

I felt pretty good most the day, now the pain is setting in a little more. My head is pounding from the general anesthesia and I feel like I have strep throat from the breathing tube. My muscle doesn't hurt too bad, every once in awhile it spasms and that hurts. So it might be a rough night, hope not. And the plan is to come home tomorrow afternoon. Hope I feel better by then! Keep praying, I'm not out of the woods yet!

After...

I woke up around 11:30, out of surgery and feeling pretty good. I am in my room now just relaxing, enjoying some pain free time. Pretty sure the pain is still to come. They gave me a bunch if local anesthetic before I woke up so the site doesn't hurt too bad now. The ICD is implanted under my muscle so they had to cut my pectoral muscle. That's the worst of the recovery. I came out if surgery a little emotional about the fact that I actually have this in my body and the fact that I wish my mom could have had one. I am blessed that I know what I know, that this technology is available and that I have wonderful medical coverage and care in this great country of ours :). Pray that I have as little pain as possible and there are no complications. Thanks for all your support and prayers!

Day of

Just getting ready to be checked into the hospital etc. Praying for peace for me and Reese, wisdom of the doctors, and the quality of the devices they are putting in me! I will update when I can, I have no idea what to expect as far as pain afterward...

Enjoying Alaska and a surgery date

All the lights were off downstairs the other night and I was about to go up to bed when I saw a mama and baby deer in our backyard.  We have been seeing lots of deer roaming around but I loved that I could quietly open the sliding door and take pictures from my kitchen!

 We were out for dinner the other night and this big guy was perched outside the window of the restaurant.  Eagles are all over the place up here!

 On Sunday a bunch of people were going to hike up Pyramid mountain.  Reese does this on a weekly basis.  He and his coworkers hike up and ski down.  Reese also takes Lane up there, about half way up for him to snowboard down.  So I am not much of an outdoorsy person or in that great of shape for that matter, but for whatever reason I decided to go up with them.  Three of our friends skied and me and two of the girls snow-shoed up.  I began doubting myself a few times, but I needed to get out of my head and just put one foot in front of the other.  I made it to the top and it was beautiful!

 Here is Reese and I at the top with Anton Larson Bay in the distance behind us.  Reese stayed with me the whole time.  I was the last one to the top but for having a "bad ticker" I still thought that was pretty good.

I had my consultation with my new cardiologist/electrophysiologist in Anchorage last week.  I flew up there for just the day on a Coast Guard C130 plane.  It was quite the experience.  They have a medical flight that goes there once a week which is awesome!  I was anxious to get a second opinion about the defibrillator and just have someone else's take on my situation all together.  Turns out this doctor is on the same page as my San Diego doctors.  He was a really great doctor, I could tell that from the beginning.  He was extremely easy to communicate with and explained things very well.  So I have an appointment to get my defibrillator placed on April 22nd.  I feel good about it.  I prayed that God would speak clearly to me one way or the other whether I should get it or not.  I felt like after my appointment with him, I knew that this was the right thing to do.  I have had doubts because I feel like I am healthy, I have never had any arrhythmia's.  The thing is that no one knows when they could start, I may never have one... or the first one I have could kill me.  After my mom died we always said, "If she would have had a defibrillator she would probably still be alive."  I don't want to have anyone say that about me.  I want to do all that I can.  Don't get me wrong, it's not easy for me to be getting this.  The thought of needing to have my "battery changed" every 10 years bothers me just a bit!  The fact that I will have a device implanted in my chest is weird.  But God's timing is perfect.  I found out that I needed this defibrillator on January 16th, and now almost 3 months later, I am ready.  I WAS NOT ready on January 16th or even a couple weeks ago.  I am now.  Its kind of like climbing that mountain on Sunday, I put one foot in front of the other and eventually I got to the top.  I tripped, I fell, my legs burned and I thought about quitting a couple of times.  But I didn't and I put one foot in front of the other and I got to the top.  It was fulfilling and a beautiful sight.  To some people that mountain wouldn't be that big of an accomplishment (like Reese who has been doing it once or twice a week) but to me it meant something bigger that just hiking up the mountain. It was a symbol of something more, I can do this.

We Are Here

 We are finally in Kodiak and settled.  We got here about 2 1/2 weeks ago. The last two months have been crazy.  We went to Washington for Christmas and three days later the movers came to pack our stuff up and they left with it on January 9th.  We stayed in Coronado for 10 days and then headed up to Washington (again) on January 18th.  We drove up (I will share some pictures later), Reese got on the ferry with the cars to head up to Kodiak and a week after he left, the kids and I flew up to Kodiak.  So needless to say, it is nice to be in our own home, with our own stuff and own beds.  I am loving our house, already feels like home!  Here are a few pictures I've gotten since we've been here.

 There are bison here!  So cool, they live in the wild about 45 minutes from here.

 Estelle is her usual dramatic self.  One day she insisted on wearing her bathing suit.  This was her at some point that day.  Bathing suit, fairy wings, Belle high heels... playing with her jewelry and "makeup."  Oh my.

And Lane is enjoying exploring.  The back yard has been fun for him to play in and he's met the neighbor boy and has been playing football with him after school most days.  The adjustment was the hardest on him with starting a new school.  He is into his 3rd week now and I think it's going much better.  His school seems great.  He is in a 2/3 combo classroom which I think is great since he is old for his grade.  

I really haven't even known where to start with the blogging.  It started out that I just didn't have much time for blogging with the move etc.  Then as time went on, I think I kind just didn't want to think about having to type out what is going on with me.  But I have taken some time and gathered my thoughts.  We know now that my heart condition is the same thing my mom had.  It is a hereditary heart condition.  It's not brought on by lifestyle choices like diet, alcoholism, or drug use, high blood pressure, high cholesterol etc, like many heart diseases are.  I am doing well physically.  I feel pretty normal most the time and thankfully I haven't had any arrhythmia's or heart racing episodes.  But two days before we left Coronado to move up here I had a meeting with one of my cardiologists.  That day he told me that based on the knowledge that they have about this disease I have, that I should have a ICD (Implantable Cardioverter Defibrillator) implanted.  This ICD would control any arrhythmia's that I might have.  I was shocked by him telling me this since I had never had an arrhythmia, I knew that I would probably need one in the future, but now?!  But they don't know when these arrhythmia's will start and they want to have it in place before they do.  These arrhythmia's can be deadly like my moms was.  I sat in the doctors office holding a defibrillator in my hand, I was speechless. 

Over the last month, I have been overwhelmed.  I have been angry.  I have been in denial.  For a good couple of weeks I tried not to think about it, I busied myself.  After all, I have a lot to busy myself right now.  We got the entire house painted and unpacked every last thing.  I needed to make a doctor appointment here so I can get a referral to a cardiologist and get the process going for all this, but I didn't want to.  What I wanted was to enjoy my new home, get settled in, have fun decorating.  But today I finally went to the doctor.  Nothing new to report, I am just in the process of getting a referral to a cardiologist in Anchorage.  But I am on the right path.

Through this process God has been working on me to be aware of His presence, lean on Him for peace and trust in the hope I have in Him.  I ran across these words today that I had written in my journal.

"Hope is acting on the conviction that despite what we see with the natural eye, God is working in the spiritual realm to accomplish his perfect will in our lives.  His hope does not disappoint."

I have realized that I need to take time everyday to reflect, to decompress, to listen for what God is saying to me.  After Case died I found myself setting aside time everyday to grieve.  It sounds weird, but I found that I needed to sit down and make myself think about Case, read my bible, write down my thoughts.  I think if I hadn't done that, maybe I wouldn't have really processed everything, really grieved.  You can distract yourself and keep busy in order to not face things head on, but that is not healthy for me.  And I am finding that to be true now too.  I can be in denial and put off what I really need to do, or I can face this head on.  

Matters of the Heart

I had an MRI of my heart last week, and on Tuesday we met with the cardiologist to go over what he found.  I have a very mild case of dilated cardiomyopathy.  The left ventricle of my heart is mildly dilated (the heart muscle is stretched thinner than it should be) and the output is a little low, when it should be between 55-65%, mine is at 49%.  This is very mild and they can't see any obvious things that are causing it.  I also have quite a few irregular heart beats.  And he has put me on a low dose of beta blockers for that.  While everything is very mild and this doesn't change my life too much right now, this is what my mom had.  She in addition to the cardiomyopathy also had a rhythm issue that would cause her heart to beat really fast for a really long time and sometimes cause her to pass out, I do not have this right now.  Also, her heart issues were not properly addressed either, which I think ultimately led to her death.  Mine have been caught early and are being and will be properly addressed and treated.  I know that this is good news, that mine is really mild and I have never passed out or had a racing heart. What I am dealing with right now is my fear that it could get worse, the fear of the unknown and what "might" happen is getting to me. I really need prayer for this.  I just want to embrace life and be thankful that I am healthy right now, but I am so fearful sometimes.  The beta blockers are supposed to make me more tired than usual, yet I still can't sleep at night.  I also have anger, anger that my life just can't be normal for a little while.  I know these are all normal reactions, but I really need prayer about this.  I know that God has a plan for me and that doesn't always mean that things will be easy on this earth.  I need to trust that and carry on.  I have come across some verses that have been very relevant for me.

My friend Kristen sent me this one,

"Whom have I in heaven but you?  And earth has nothing I desire besides you.  My flesh and my heart may fail, but God is the strength of my heart and my portion forever."  Psalm 73: 25-26

And I found these about fear in Jesus Calling yesterday,

"In addition to all this, take up the shield of faith with which you can extinguish all the flaming arrows of the evil one."  Ephesian 6:16

"Surely God is my salvation; I will trust and not be afraid.  The Lord, the Lord, is my strength and my song; he has become my salvation." Isaiah 12:2

Your prayers are very appreciated right now.  I will be back soon and hopefully be in better spirits :)