December 10, 2012 (Surgical Consult)

As you know we had our surgical appointment for Jackson today. It wasn't surprising, but none the less it was our worst fear becoming a reality. We haven't been able yet to compose to pick up the phone to call anyone, but at least wanted to get an update out that explained a little further.

The plan at this point is this:

January 24th- Echo/ekg and doctors appointment with our EP doctor.

Early February- They will use the data from the January appintment to present at a surgical conference where all doctors (cardio, EP, surgeons, etc) will be present.

Late February- Will get a call for another surgical consult where we will discuss everything that was talked about at the conference and shcedule Jackson's 1st surgery. Should be scheduled for something quite quickly after this consult.

1st surgery- PA band will be placed to condition his left ventricle to be switched with his morphilogical right ventricle. A dual chamber pacemaker will be inserted as well.

We then wait an estimated 6 months to a year for this ventricle to condition before we attempt what seems the impossible.... the dreaded double switch.

2nd surgery- The double switch is actually called one of the most difficult and complex pediatric surgeries. They will go in and actually flip his heart (to try to put it simply).

So, all in all, we could technically be gearing up for 2 major surgeries in 2013. We are somewhere in between completly devastated and relieved that someone actual has a plan since the day Jackson was born. We have lived with the stress of waiting and watching for a year and half and now we will switch gears to the stress of watching him suffer for a season.

To be honest, it is all still sinking in. It is much like the day of his original diagnosis where life seems like an impossible blur. I don't know how to get up and do tomorrow. However, this time we are in the hands of an incredible team. Today, 2 very important things were confirmed.

1) We will remain in Houston this next year. Our lease is up in a little over a month. We are having a really hard time finding something that we can afford that is even close to the hospital. This is an area that we are being streched in faith. We continue to tithe and continue to beleive that the perfect place is out there..... but truly we need to find something like as of yesterday.

2) Dr. Fraser and our team at TCH is the place to be. We won't be pursuing other opinions. We feel completley at peace with his care and his judgment. Something we had prayed that would be clear to us today.... and it was!!!


So tonight I wonder how I will ever look at my son recovering and sufferng. I wonder how I will recover as well from a parents worst nightmare. I know that Chris & I are strong, but this is something no parent should ever have to face. I wonder how to get up tomorrow and the day after that with all of this hung over our heads. It feels paralyzing. It feels like our life has come full circle back to our first appointment. Devastation.

What I can say is this. What I have seen in the last 2 years as it seems to have come full circle, is that we have seen with every turn that God has and will continue to be faithful. Where I have watched my heart ripped to sheds, He has made it abundantly full. When I have felt like our finances couldn't continue the fight, God's provided all our needs. So to him who He is able to do abundantly more than I could ever imagine, I lay all my fears, all the details, and all my deepest pain. I know He can take this trial, this test, and turn it into an incredible testimony. I am believng and clinging to that promise. That through the heart of my most precious that anyone who sees and hears the good work that is being done would taste and see that God is good!

Tonight I am going to be in denial, watch the voice, and toast my husband with a glass of wine. But, you better believe that tomorow I will be back at it..... gloves on and ready to fight!

thanks for the support, prayers, and love. We will all get through this! Keep this little face in your prayers... isn't he worth all of this??? What a sweetheart he is.

September 20, 1012- A year of waiting

A year ago today I stood over my little boy's hosptial crib. His tiny two week old body shaking with hunger as we were told he was not able to eat before his surgery. We tried soothing him in every way possible. I tried to exert a calm front for him but inside I was torn to shreds. It was like my own heart was being ripped from my body as I thought about the life he was enduring. Thinking about watching him being wheeled away into a surgery room while they worked on his heart was an unbearable thought.

Jackson Waiting to go in for surgery, 9/20/2011

His surgery was scheduled for noon. As that time rolled around and went our nerves continued to climb. He was getting more hungry by the minute and I was unravling by the second. I would have given anything to switch places with him. I paced the room listening for anyone that would come near to our room. It wasn't until 3:00 ( 3 hours after our scheduled time) that our surgeon came into our room to talk to us about what was happening. When he told us that they had a change of heart and would not be doing the surgery I thought my knees were going to buckle. He was unsure if it was the right timing and felt that we needed to give Jackson more time to grow and to watch what his heart was going to do. He left the room and I collapsed in a ball crying for what seemed like an eternity. On one hand it was absolutley amazing to have our son spared from a surgery. On the other hand, it meant more waiting, more unanswered questions.

So here we are today. Fast forward one year and we are still waiting. Waiting and watching to see if signs of heart failure begin to show in our precious boy. When people look at him they see a healthy, normal, and happy little boy. What they don't know is that this little boy has a heart that is completley backwards, complete heart block that creates a heart beat of around 48 beats per minute while he sleeps, and even on his best days, has an average heart beat of around 70 beats per minute.

For a whole year we have been waiting every day. Checking him, worrying about every fast breath he takes, watching his little toes for circulation. Hoping for the best and planning for worst. As I look back over the last year I began to really take all of it in. All the emotions, all the experiences, and it lead me to realize how truly blessed we have been. We continue to wait for so many answers for what is to come, but one thing we have never had to wait on is the continued grace and love of the Lord.

Every step of the way He has poured out every ounce of strength we have needed and provided for every need that we have had. He has granted wisdom when we were lost, opened doors that we thought were impossible, and given peace in areas that are defined by uncertainity. What an incredible ride this first year has been! On days where anxiety begins to rise, we have to constantly remind ourselves that living life with purpose is a choice. This is the road we have been given. It is one that gets bumpy (or if I am being really honest, it seems like huge boulders are falling on us at times) but it is a road that is also paved with peace and unbelieveable joy. How can you not just love your life when you wake up to this each day? A happy, stable, surgery free, and now walking little miracle? My heart and my life are full because of what the Lord has faithfully done in our lives! thank you Jesus for the work that you continue to do!

 

What defines you?

Growing up I always wanted a family. From the time I was able to start playing with a baby doll I had one wrapped under my arm and I probably played with them longer than most kids (don’t even ask what age). Fast forward about 20 years and here I am; a mommy. Doing the job I have dreamed about, desired more than anything, and fantasized about my whole life. The thing you never understand until it happens is how much your world drastically changes from the second you have a child. The point in time when reality changes is different for everyone; whether it’s the day you see a positive sign on a test, the moment your newborn is laid on your chest for the first time, or the car ride taking your small package home where it all becomes a reality. No matter when it occurs, somewhere along the way these little ones have a way of taking over everything you thought you knew or held to be important and turning it all upside down.

In so many ways my children have become who I am…. Literally. There are very few times in my life when I am away from them. Ava was our first to come along and she rocked our world. We had never laughed so hard, felt so much love, or strived for so much in our lives. Then came Jaiden and he/she taught us that love that is lost is something you never get over… never. Finally came Jackson and boy he is constantly throwing us for a loop. I find myself so busy taking care of my children and learning for them and through them that they have become a lot of my identity. And recently more so if I had to take on a title it would probably be: Heart Patient Crazy Mommy. Although I say it in good humor, there is a lot of honesty behind that title. In so many ways Jackson and his condition has taken a hold of every area of our lives and reshaped it. It’s taken over our finances, our location, our priorities, and our marriage.

I find that sometimes the best way to help yourself and others is just to be as honest as you can and so to that I would have to say, “Congenital Heart Disease (Congenitally Corrected Transposition of the Great Arteries) has taken over every area of my life.” In so many ways it kind of has to. After all, as a mother I have to do everything I can to give my kids the very best. I heard it said once from a surgeon that heart patients have to have something to fight for, if they don’t, their heart won’t fight to beat in recovery from surgeries. Granted, some hearts stop beating simply because it is time for them to. But, it stuck with me. So, everyday I wake up and I try my very best to give Jackson every reason in the world to want to fight for his life. I feel guilty when I am not holding him, I stress when he is upset, and I worry constantly that I am not giving enough time, energy, and effort to both my kids. (this is probably true of most moms).  Between budgeting, bills, grocery shopping, nursing, hospital appointments, school planning, cooking, etc, it’s overwhelming.

But then the time rolls around every night when the kids go to sleep and there is for the first time a moment to sit and rest. But, wait, “a payment plan needs to be set up for that bill, the car transmission light is blinking( research the fix), ava isn’t signed up for dance class, must sign up to meet other moms in the area, Jackson needs a refill prescription, and on and on. Enter now my husband who is wanting to catch up and spend time together….. ahhhh!!!! To my poor husband, you get the little ounce of what is left of me and on some days the nothing that is left and I am so sorry. I’m trying!

So, tonight I ponder about the life that I have and the life that I strive for. I have all the incredible ingredients, but I am all out of whack on how to make it just right. Life will never slow down and I will always be the mom that pushes myself to go to the ends of the world to do what I can, but there has to be more than just trying to keep my head above water. I want more than surviving, I want to enjoy my life more than I ever have before.

So tonight we bought bikes and tomorrow we are headed out with the bike cart in tow to enjoy this new city of Houston. We moved here for the heart of a little boy but we as a family will not be defined by a medical diagmosis. It’s time to stop pushing so hard that we forget to slow down and just be what we are. A family trying to fight for what’s most important in life. A mission. An opportunity. An open door. A chance at life together. I will never know what his little heart is doing, but today it is beating. So live, breathe, end enjoy the time that we have. Tomorrow will be what it is, but today….. today is m

July 2, 2012 The plan of Obedience

From the second I walked through the door of our home with Jackson for the first time in the back of my head I was already begging to go back to Houston.  Living three and half hours away from our doctors was one of my greatest stresses. After all, they weren’t just doctors to us. They had become an extended family. A family that understood our son’s condition, had seen us in our most desperate times, and were continually working on wrapping their heads around Jackson’s very rare and special heart.

It was October 2011 when we finally got back home to Austin and the same week we settled in was the same week I began talking with the Lord about moving to Houston.  I felt the need heavy on my heart, but I wasn’t sure if it was my own insecurities or something that God had in store for us. I began expressing my desire to Chris and to my family. Of corse the reaction was, “Just give it some time, let’s just see how you feel after things calm down and you get back in the swing of things.” After all, we owned a house in Austin and Chris’ job (our livelihood) was there too. But, after all we had seen the Lord do; I knew that if that was the plan, we would be packing bags in no time. We began to set into action a plan. One that we decided to follow hard after until God shut the doors. The plan was this: 

1)      Phase 1:  Fix the house to sell it. After all, we had bought it as a foreclosure only 3 months before I had temporarily moved to Houston to wait for Jackson to come.  There was work to be done, but we were determined.  We figured even if the plan came to a stop at this first step, the only thing actually done was getting our house in shape…. Not too shabby. So for months, we put our extra money into the house. We painted cabinets, fixed lighting, did yard work, fixed dry rot, etc. We budgeted and planned to do a few projects a month to have it ready to sell by spring. As spring approached we were almost done and sure enough, the desire to move was that much stronger. So, we moved to Phase 2.

2)      Phase 2: Sell the house. We listed our house with the same agent that sold it to us. We love Pat and are so thrilled to have added her to part of our extended family. Pictures were taken, the sign went up, and March 22^nd we made it officially for sale. Our very first showing on that Thursday was nerve wrecking. After it was done, I sat in the kitchen and said, “Lord if this is your plan, just take the house.” We just needed to know that we were doing the right thing. As much as we wanted to move, this step was one of the biggest struggles for us. After all, it wasn’t just selling the house; it was selling our first time home buyer advantage, giving up our stability, and entering us into the unknown. Well, after only 2 showings and 36 hours on the market, we got a phone call. A full price offer! In just 11 months we managed to buy one of the cheapest houses in our neighborhood as a foreclosure, do all the work (but the carpet) ourselves and sell it less than a year later as the most expensive house to sell in the subdivision as of this year.  An amazing $35,000 more than what we bought it for! Hands down, completely the Lord on that one! 

3)      Phase 3: I’ll be honest that we had our doubts that we would make it to Phase 3. This is where we knew we had to decide where to move next. Chris had been off and on been asking to work remotely with his job since we had been going back and forth to Houston so much over the last several months. Every time the answer was, “no.” Now that the house was sold, we had about 30 days to figure out where we were moving. We made the very difficult decision to follow the Lord’s prompting and move to Houston regardless of what Chris was able to do with his job. I would be with the kids in Houston for the weekdays and then Chris would commute down to see us for the weekends. It was far from ideal, but we just knew that God would sustain us through this season of our lives.  So, on June 10^th, 2012 we made the move to our temporary spot in Houston to figure out what needed to happen next. It was so difficult leaving. I was moving with two kids to a new area, without having my husband to help during the week, away from family and church family. I knew it had to be done.  Phase 4 begins and the floods of blessings begin. 

4)      Phase 4- God knocks our sock off. No matter where you are in life and what you are in the middle of there is always blessing in obedience. About 2 weeks after we moved, Chris made one last ditch effort to ask for remote work and on Tuesday June 26^th, 2012 it came back with the first resounding yes. Not only yes, but a full time yes. After months of trying desperately trying to make it work, God took care of it completely. He moved up here with us the next day and has been with us since. How do you thank a manager enough for that one?? So here we are in Houston together as a family and waiting. Lord, what next? Where to? It’s full of unknowns, stress, and yet so full of promise.

After this last year, how can we not trust? How can we not stand expecting the impossible to become possible? It would be such a shame to doubt or question now. Have I not seen and tasted that God is good? That He cares for the details that only I have thought in my head. Tomorrow we go in for our appointment of tests for Jackson. I can’t help but feel that there is something waiting to happen. Lord, my arms are open, my hands held high, and my head turned to the heavens.  All eyes are on you. Into the unknown we go, for you have already paved the way. Together we journey through this standing amazed at what you have done and are yet to do.

And the angels surround him singing, “Holy, holy, holy”

June 14, 2012- Start Writing Again

Many of times I have sat at my computer in the last few months staring at the screen waiting for words to come. I would type a bit, delete it, and then try again. Every time I would hit this wall where the words just wouldn’t come. As time went on I felt more and guiltier that I hadn’t been writing, which caused even more writer’s block. I had promised myself that I would continue to write throughout Jackson’s life not only as a reminder for us but as a book for him to have when he is ready to read it. I never thought it would be so hard to just write, but it turns out it is!

It’s been a year (3 days short of it) since we had our first doctor’s appointment at Texas Childrens Hospital. It was the appointment that forever changed our view on Jackson’s survival and continued care. It was the first time that we found hope in him surviving. As I read back over the blog post from this very day last year I was so encouraged to see that it was titled, “God you are doing it”. I blogged about how God was carrying us through our difficult pregnancy in a way that I could have never imagined. It was no doubt what I needed to be reminded of tonight.

For here I sit on a couch in Houston thinking to myself, “What in the world is this all coming to?” We moved here this last weekend to continue Jackson’s care and we are giving it everything we have…. Literally! We sold our house and moved here with Chris’ job still in the Austin area. He will work there Monday- Friday and then spend the weekends with us. I know, it sounds crazy, but it’s the only thing we know to do right now. It would be nice if there was some sort of manual for this type of thing. Maybe something like, “If you son was born with a completely backwards heart then do this….”

Over the last few weeks I have questioned if we were making the right decision by separating our family for this time. Believe me, signing up to be a single parent for the week in a new city not knowing anyone is enough to keep me in Austin just fine.  On the other hand, I am so afraid of losing my son, that I know I would move around the world at the drop of a hat. The conclusion we have came to is that we have to take things one step at a time.  We need to do everything that we can to fight for his life. That means our lifestyle at times will be uncomfortable or crazy. We will take this step and then see what happens next. We continue to wait to see what care and surgeries he will need next.

I wish there was an easier way to do this. After so much thought and prayer we have realized that the only option for us is the option to do what we know to be right. As parents you have to feel like you are doing everything you can. So, here we are. Embarking on another journey, this time somewhat separated from each other, but committed to coming out of this stronger, more in love, and with a deeper compassion for those around us also struggling.

There it is…. the fear of blogging about our reality has come to an end. God has incredible plans for our family and through the ups and downs we will be faithful to tell of his goodness!

Appointment Update

Thursday was our appointment in Houston at Texas Children’s Hospital. It was a long and difficult day, but we made it thru. Here is a little glimpse of the things that happened.

Jackson ,

Yesterday I took you into your follow up appointment. Oh how I wish you didn’t have to endure a long day of exams, wires being put on and taken off, and countless hours waiting to be seen. As we got ready to go this morning just you and I at the hotel room I often gazed upon your face as I tried to keep it together. As I bathed you I looked at your little body and knew that by this afternoon you would be stuck with wires for the next 24 hours. I put my hands to your chest and I prayed for your heart. “Jesus, you are in control.” 

As we went in for your echocardiogram I entertained you for 35 minutes as they performed an ultrasound of your heart. You didn’t like the cold gel on your chest but you loved when I talked about how handsome you were. You kept your eyes on me almost the entire time almost as if to ask if everything was ok. I wanted to assure you that everything would be, but all I kept seeing was some of your very lowest heart rate numbers flashing on the computer screen. As I softly spoke to you and held your tiny fingers every muscle in my body ached with worry. You didn’t know though, did you? After all, isn’t this my job? To carry the burdens along your bedside no matter the cost. To soothe you and hold you when you are frustrated at your arms being pinned behind you. I was there yesterday and I always will be.  

As we finished I knew that we had a few hours before we would know any results so I pushed you in your stroller down to the food area to get a snack. As I reached for a small bag of trail mix emotions came over me that I could not contain. I wanted to collapse and cry right there in the middle of the masses. I went to the chapel on the 3^rd floor and there I picked you up into my arms and began to sob. You must have felt my pain because you laid your head on my shoulder and snuggled deeply into my neck almost as if you were trying to now console me.  Oh how quickly the roles reversed. Your gentle touch was now comforting me. I sent a message to family letting them know that we needed prayer and floods of texts came back with encouragement and prayers. You are loved little one. 

We went back up for your EKG and results and waited for what seemed forever. They finally called us back and more wires were placed on. You hate the feel of those little blue stickers all over your body, but you did so good today.  I soothed you as I had to take all 12 of those stickers off of you one by one. You were so patient. I was so proud of you. The doctor came in and reassured me that everything was ok. Your heart rate is low which may mean that your accessory pathway is beginning to fail, but your underlying heart rate is still above the criteria for a pacemaker at this point. You continue to have multiple issues paired with your switched ventricles. These issues make it difficult for the doctors to confidently decide what steps to take next. We had to up your medication due to the fact you are growing like a weed. Sixteen pounds already my love! We connected you to your holter (5 lead) with wires. You will have to wear these all the way home and for the next 24 hours. The sight of you with anything taped to your chest makes me sick to my stomach. Oh how I wish I could switch places with you.  

As we left the hospital I felt sheer exhaustion hit. No clear answers, no knowledge of what happens next, no definitive timeline.  I was emotional and drained but I ended the day with you in my arms. Sure you were coming home with wires, but you were coming home with me. So, tonight and everyday after I will continue to enjoy you every little chance I get. I will fight for you, I will be exhausted for you, and I will submit my deepest worries to the One who knows the very depth of every detail of your heart. I will continue to write your story for I know that it is one that needs to be told. Some day you will read this and when you do I want you to know that with every step we take there is something much bigger happening. We may never know what is to be with your very special heart, but for now little one I will follow Jesus into the hospital with you. I will smile at the lost and the needy in the elevators. We are in this together.   

I love you.

When the Hard Gets Harder

This last year more than ever I have found myself constantly (and some days this is no exaggeration) reiterating in my head the concept that "God is good." It is a truth that I have grounded my life on. It's not an idea that has been forced on me, nor is it an unfounded belief that theoretically just sounds good in the religious realm. It is to me the most foundational truth that I can always come back to when my life gets crazy. This last week has presented several trials in which I have had to make the choice to believe this statement. Oh how I wish faith was something that once achieved was something that just stuck. Faith is a choice, one that is a daily or in my case, a minute to minute choice. When life takes a turn, how will I choose to respond? Will I have enough faith to say, "God is good, " or will i find myself questioning His plan for me?

Last week, Chris interviewed for a job that he had a pretty good chance at getting. It was better pay, a better position, and a move up in the corporate world. At the end of the week he found out that he did not get it. As I got off the phone with him after hearing the news I continued on reading a story for Ava as she was getting ready for nap. My eyes filled with tears to the point that I couldn't see the words on the page. As my voice cracked, Ava looked up at me and softly smiled. Why? Why not this job? I found myself thinking, "Our life is already stressful. It is already hard enough with Jackson. Why not this job to help take at least some of the heavy burden off?"

On Thursday of last week I brought Jackson into our Pediatrician for some issues that he was having with spitting up. It turns out that he is just still congested. However, during a normal exam we found that his heart rate was very low. Our doctor called down to Houston to see what to do next and we waited for an answer. I went to get the kids some lunch as I waited to hear what I should do next. I frantically paced the isles of Target as I tried to keep my cool for Ava's sake. I smiled at her, we sang some songs, and we looked at anything princess we could find. As I left the store, I could not even remotely remember where I parked. My brain was just racing with, "What if this is an emergency? What if this is my nightmare coming true?" After 15 minutes of searching the parking lot, we found the car, went back to the doctor’s office, and completed an EKG. Everything appeared to be back to normal and as quickly as we rushed back, we got back in the car and headed home.

So here we are, Tuesday night, the day before we leave for Houston and Chris tested positive for the FLU!!! It came out of nowhere and took him down over night. Fever, chills, aches and pains. Since Jackson has been discharged from the hospital after being born, Chris has not been able to go to a single doctor’s appointment. We were so excited with the new year bringing his new vacation time back that I have been anticipating being able to have him with me during these long weary days of testing. I am so tired and emotionally drained of carrying this part of the burden without him. But, tomorrow I will head back down to endure another full day of appointments on Thursday without him. Soothing Jackson, distracting him as they run scans on his heart, waiting in rooms for any sort of results that they can give me.

 It's been a painful week. A week of wondering why and questioning when will it get easier? With each bump in the road I have had to choose where to direct my thoughts. I have failed so many times. I have allowed my plans to overtake the bigger picture at hand. But, as I have failed, I have fallen to my knees to ask for forgiveness. Lord, grant me the faith that when doors close, I am there to say, "you are good." For I know that even though these trials are difficult and painful that they are all part of a beautiful story that you have written for my family. You are Good even when I don't understand my circumstances. Your love for me is great even when things don't go the way I planned. This I know to be true.