Tuesday, December 13, 2011

December 13, 2011 (Accessory Pathway)

This month payroll is deducting all of our benefits from our paycheck when Chris had to take unpaid leave for Jackson. With basically no paycheck coming in, literally over $3000 in medical bills due, I felt overwhelmed. Then our car broke last week. Then I received a letter that our insurance is reviewing their contractual responsibility for certain coverage for Jackson. I went from overwhelmed to exhausted to endless tears. "When can I rest God? When can I truly take a deep breath?" Then I was reminded of this:

It was September 15, 2011. It is a day I will never forget. It was nearing 5:00 am when Jackson woke up for his early morning feeding. The world was quiet below our high rise room at Texas Children's Hospital. Jackson was 8 days old. It was a Thursday and we were nearing the Friday "decision day" as to whether or not the doctors thought he would need a pacemaker. My heart was burdened beyond what I thought I could bear. I began to pray and everything in me just couldn't find the words to say. I was exhausted, I was beaten down, I was under attack. I woke Chris and said, "I just feel like Jackson's life is under attack and we need to get up now and pray."

We prayed nonstop for the next two hours. Walking around our small hospital room as Jackson's cords hung from his tiny innocent body, I wept as I cried out for a miracle. "Jesus, please heal him. Touch his body and hold his heart." 7:00 am rolled around and our nurse practitioner came in to look at Jackson. Everything seemed "normal" and she said they would be back for their normal rounds. Normal... it's almost a word that seems like a joke for Jackson. His heart is backwards, his average heart rate was in the 80's and it never had gone above 90. Jackson's EKG came at about 12:30 and that's when everything changed. The computer screen came up and his heart rate was in the 120's. The technician was confused and then excited. Holding Jackson's hand I cried. I thought for sure... "This is it, he's finally healed!" I was giddy and overcome by emotions.

It was late in the afternoon that a knock on our door brought the EKG technician into our room again. He said, "The doctor's didn't believe me that this was the right one for this baby." Sure enough, his heart was up, no sign of complete heart block. It turns out that Jackson's AV block (Complete heart block) was still there and is still currently. What they were able to find was that he has an accessory pathway in which he conducts electrical pulses through to get his heart rate up. The doctors said they were confused because he had to have been born with it, but it was unusual for him to never use it until his eighth day of life.

A mystery to them, an answered prayer to us. There is no medical answer to why these things continue to happen in Jackson's life. For 9 months in my uterus and eight days of life he functioned with no accessory pathway and yet on the very morning that I woke up and felt his very life being fought over in the spiritual realm he begins to use this miraculous fiber to keep his heart beating at a pace normal to the average baby. Since then we have ran 3 different holter (24 hour) periods in which they have not seen any periods of complete heart block. His average heart rate continues to be in the 120's.

Though even after that there ups and downs of our hospital stay including a surgery scheduled and canceled, Jackson came home with nothing but a simple medication given to him every 12 hours. On his 8th day of life, a battle was raging, a war was being fought and then as prayers were being raised, God stood glorified. Where science can not answer to these things, I know that the God that I serve can. We have yet to see just how miraculous Jackson's heart is.

So today with a heavy heart on all of the practical items of our fight for Jackson, I am reminded that God is never far. The battle is still being fought and the storm is brewing. Will I choose to stand and fight or will I keep my head buried in my tear soaked hands? The God who has faithfully carried us this far would never drop us now.

"Never give up, at your lowest moment God may be preparing you for the biggest thing you'll ever do." --Chuck Colson From today's Focus on the Family Daily Broadcast

Thursday, December 1, 2011

December 1, 2011

I had always intended on writing after we returned home with Jackson. After all his journey is far from over. I knew that I would love him, but I don’t think I could have prepared myself for the amount of emotions that his little body brings to my life every day. That is exactly the reason that I haven’t found the time to sit down and blog about our journey after finally bringing him home to Austin. I had no idea just how different my life would be with Jackson in it. I spent much of my time before he was born wondering if he would make it and if he did how his life would be. Would he be in pain? Would his body be tired all the time? Would he be in and out of the hospital?

To answer these questions, here is a little glimpse of what I look at each and every day:

Almost every picture I take of Jackson he is smiling. It’s not just a coincidence. He is the happiest and sweetest baby you could ever hope for. He is growing like a weed and much to the surprise of our pediatrician he is in the 95th percentile for both length and weight. When he smiles at me, my heart literally skips a beat. His face lights up when you talk to him about how handsome he is and he absolutely loves his sister given nickname “Superman Baby”.
There are moments of sheer panic for me as I learn to live with a baby that has medical issues. At times I feel on edge as I watch for any signs that could begin to tell us that his heart is not doing well. But, day after day he continues to not only live his life, but to absolutely thrive doing it. What a privilege it has been to watch him grow stronger and to watch as his heart continues to be stable. Though I would not have chosen this life for him, I have been amazed as I get to see miracles happen on his behalf constantly. Prayers being answered, results being normal, and tests showing stabilazaiton. Since so much has happened since our last blog, here are some of the answered prayers:
      1.       Long QT genetic  test (would require him to have a pacemaker immediately) came back normal!!
2.       Chromosome Panel test (any other genetic issues) came back normal. This means that his heart is an isolated issue rather than caused by another genetic disorder.

3.       His heart rate is consistently in the 130 range for beats per minute. While I was pregnant he was always in the 80 beats per minute as well as for the first 7 days of his life. It wasn’t until Day 8 of his life that he began to use an accessory pathway to conduct through.  Since then we have ran 24 hour holter periods on him and they have hardly seen a glimpse of any heart rate lower that 130.

4.       He meets no other standard for a pacemaker at this point. This is the same baby that had a pacemaker surgery scheduled  for September 13th, 2011, and was canceled 3 hours after it was suppose to start.

I could continue on and on about how God has been faithful in our lives. From our smallest of worries to our greatest fears, God has shown himself incredibly powerful! We know that so many people around of us have stood faithfully in prayer for our little boy and for that we are forever grateful. Never in my life would I have imagined my life to be so richly blessed with the deepest of love possible. For the days that I feel at my lowest I now have a perfect physical reminder of just how far God has taken us. It’s not just the body of a little boy, it’s the giggle on his face that tells me that God is not done yet… this is only the beginning of something incredible!

Wednesday, September 28, 2011

September 28, 2011 (Day 21 after birth) You're Home!

Happy 3 weeks baby Jackson!  You’ve gotten so big already and have become quite the charmer. One glance at you and my heart melts into pieces. It was last Friday that the doctors came into our room to tell us that you could come home. After two weeks of your QT length being long, a surgery scheduled & cancelled, and much skepticism as to you leaving with no pacemaker, it came down to waiting for a few more days to see if there was any hope that we could get your QT length at a normal measurement.
After your surgery was cancelled on Tuesday we knew that we had to wait for at least a few more days until we would get another verdict on whether or not your needed to have another surgery set up for the following week. Wednesday rolled around with no new promising statistics. On Thursday we knew that taking an extra long EKG was one of our only shots at revealing where your long QT was at. I stood by your bedside trying to get you to go into a deep sleep so we could see if you would slip back into your complete heart block phase. Your dad stood by the portable computer watching every beat of your heart pass quickly on the screen. We kept looking at each other. Nothing was changing, we weren’t getting the information we needed, and I felt like I was going to break down. “C’mon God, we need this. We really need this.” Then you started to stir in your sleep and it happened. We got you in your heart block. The technician hit the print button and we watched as we got the most data we had ever received from an EKG since you were born. Pages of results for the doctors to critically look at and calculate all in order to decide if you could come home.

Friday rolled around and it was looking promising, but we had no idea what would happen next. Your Dad & I both got CPR certified and then we waited anxiously to hear the decision. It was in the afternoon that our doctor came in with a huge smile on his face. Jackson’s QT length was in the normal measurement that it needed to be in and they were ok with us taking him home. No surgeries, no monitoring, no medication, no cords, just a baby boy.

Since then we have been staying up in Houston waiting for our follow up appointment tomorrow to see how things are going. There is a large chance that Jackson will need a pacemaker at some point this year as well as other surgeries in the future. However, we dodged one surgery already and we truly believe that God is doing amazing things through the incredible life of Jackson. We are committed to taking it one step at a time, one day at a time, and praying continuously for a lifetime of miracles.

For now we anxiously await tomorrow’s results but have to remember to enjoy each day with him. The high intensity of living with a child with medical issues is very scary and stressful, but the moments when you can escape the worries you experience such deep joy. Last Friday when I held him in my arms for the first time with no cords and monitors it was like an out of body experience. It was a moment I had prayed for and it was perfect in every way. I was once again reminded of how faithful God is to give me all those moments that I have truly wanted so deeply in my heart. He knows all the desires of my heart and as we hit each of those moments it’s like God allows for time to just stand still for a few minutes for me so that I can just bask in the complete joy of the milestone. It’s unlike anything I have ever experienced before.

If everything goes ok on Thursday we will be heading back to our home on Friday. It’s been just about two months since I have been home and I anxiously wait to carry that little boy through those doors. Only a few more days and it could be a very real possibility. For now we take one day at a time and at times one minute at a time. I am blessed in every way because each day I wake up to see God’s grace in my life in the physical form of a perfect and special baby boy
 Ava holding Jackson all by herself!

 Holding Jackson for the 1st time with no wires attached!

 Getting ready to head home!

A long time in coming... 2 carseats in the back of our car!

Wednesday, September 21, 2011

September 21, 2011 (Day 14 after birth) Keep Smiling

Yesterday Jackson was scheduled for his pacemaker surgery. We waited anxiously for noon to roll around as that was their best guess for a time slot for him. As a mother it was like a living nightmare waiting for the clock to slowly roll around  to part ways with my son. One o’clock, two o’clock, finally three o’clock rolled around. We hadn’t heard anything and I was hanging on by a thread. A knock on the door and in came our surgeon. He began explaining that we weren’t going to be doing surgery. I had to find a seat on the couch as I listened to him explain his concern with operating on him with the uncertainty of exactly what to do in order to prepare him for future surgeries.

Our surgeon, the incredible Dr. Fraser seemed to think that giving it a few more days may allow us to make a better decision about whether he needs a pacemaker right away and further what was needed to be done during that procedure to prepare him for the possible larger surgeries down the road. I tried my very hardest to hold back the tears as so many emotions flooded my head.  I had mentally prepared for a surgery that wasn’t going to happen, I was being told that we are starting to look at more major surgeries than previously thought, and realizing that we will need to continue to stay at the hospital waiting for further answers. As soon as he left the room the very sound of the door closing brought the rush of tears flowing freely. I broke down and hardly had any time to process as the long string of doctors and staff flooded into our room one after another. I was getting tired, so very tired.

After everyone had left and things quieted down a bit, Chris asked me if I was okay. I found myself sitting on the chair next to him saying (I quote word for word), “I don’t know. I just keep freaking waiting for God to show up.” As soon as the words left my mouth they stung my heart. Really, is that how I felt? If you have ever caught yourself in mid sentence saying something like that you know the sick feeling you get as you wish you could rewind and start over. I share this only to point out that even amongst the faith we have there are moments that my heart collapses into such deep pain that I just can’t wrap my head around what God is doing in our lives.

Last night we received a call that a large donation was made to us by some incredible family. As I sat nursing Jackson I felt like a school child wanting to climb under my desk and hide as I remembered the words I had uttered earlier in the day. The phrase popped into my head, “God’s past faithfulness demands my present trust.” God has been so good to us every step of the way. How can I even think that He hasn’t shown up on our behalf? He has, everyday He has. Even when I haven’t chosen to see that it was Him, even when I haven’t taken the time to thank Him for the things He has done.

Our night Resident came in last night and was talking with us on how we were doing. He felt horrible for us. He ended the conversation saying in his strong accent, “That is what I always like about you. You never stop smiling.” Multiple visits today where doctors have been saying how incredible they think we are that no matter what the news we handle it with such peace and keep smiling. Oh, how sweet to journey through the hard times knowing all the while that you have a God with a perfect plan. I may cry behind closed doors because I am only human, but I keep smiling because my child is in the hands of the ultimate healer and physician.

Read this with Chris this morning and felt like it was a direct word from the Lord for Jackson today:

 “Human plans, no matter how wise or well advised, cannot stand against the Lord. The horses are prepared for battle, but the victory belongs to the Lord.” Proverbs 21:30-31

Saturday, September 17, 2011

September 17, 2011 (Day 10 after birth) Do I have the faith?

The last 10 days have been a whirlwind. Having a baby is already a huge change in itself, but add to it the complications with Jackson’s heart, the extended stay in the hospital, and the waiting game and you can imagine the extreme stress that we have on our plate. We found out yesterday that the doctors have chosen to move forward with the plan to put a pacemaker in Jackson. The surgery schedule is really full next week so at best we will have one towards the end of next week or the beginning of the following week.

During all of this we get to see brief glimpses of Ava when she visits and then having to say goodbye to her is like loosing a piece of our hearts. We haven’t left Jackson’s side. In fact it has been 10 days since I have been outside. I haven’t left his room unless I need to go to the family room to get something out of the fridge. People keep telling us to take care of ourselves, to get some sun, go out for a bit, etc. I keep looking at Chris with tears in my eyes and saying, “I just can’t. I know those would all be good things to do, but I just can’t leave him.” Chris has been the perfect husband to calmly rub my shoulders and just allow me to be where I am most at peace which is always holding Jackson or standing by his bedside.

The doctors come in everyday and it seems like so does everyone else in the hospital. Some days it feels like every 10 minutes someone knocks on our door and needs something from us. Taking Jackson’s vitals, ekgs, more discussions, and more unanswered questions. The doctors have been so encouraging telling us that we are a pleasure to work with, that we are so understanding, so peaceful about the situation, so calm about the unknown. We try so hard to be a good representation on Jackson’s behalf of all the amazing things God has done so far but truth be told we are running out of steam and quickly.

Each day seems longer than the day before, each discussion is harder than the one before, each test proving more uncertainty as to what Jackson’s heart is doing. Chris is officially on unpaid leave which forces us without a paycheck, paying the full portion of our medical benefits without contribution from Dell, and medical bills continue to build as we continue our stay in the hospital. Lord, this seems unbearable, undoable, and impossible.

I was thinking this morning and really questioning where I am at. Do I have the faith to push forward when science presents an answer? Do I have the faith to keep praying for a miracle when I am exhausted in not seeing the results that we want? Do I truly believe that God can perform a miracle even at the last moment?

The answer is yes. Is it easy? No. The constant waiting, the constant disappointments as we wait for God to heal him, and the agony of what waits ahead. At times it feels like a mountain of impossibilities. I have come to the realization and although it is difficult, I know this to be true. God is faithful, God is always on time, and God always has a plan. While I don’t know if God will ever heal Jackson, as a mother I will never give up pleading for his life through constant prayer. For as we move forward we know that each day is another step in the journey closer to seeing God reveal himself more and more through Jackson’s life. As a parent living with a miracle child I have learned even in the first 10 days that the pain is unbearable but the joy is indescribable.

So in faith we push on, continuing the fight, pleading through prayer, and waiting to see more of the goodness of God in our lives. There are no doctors that have the ultimate answer, no physician that can heal like our God, and no surgical team that can change the plans God has for our little boy. We praise Him for providing such amazing staff here that is taking such good care of Jackson and continue to ask for His ultimate healing over Jackson’s tiny heart!

If you are in a difficult position, trust Him. Even when life doesn’t make sense and you don’t see the results you want, trust Him. Choose to live a life of faith, one that stands out in a world where others are searching for an answer. Set apart, steadfast, and full of character. God WILL use you!

September 14, 2011 (Day 7 after birth) Perfect Moment

September 7, 2011, rolled around and we found ourselves getting ready in the morning to head in for our planned c-section at 11:30. I thought I would be more emotional but I found myself unusually calm considering our conditions. Chris and I took time to pray together asking God for specific things that had been laid on our heart. One of the biggest prayers was that we would be able to track Jackson’s heart well enough that they would cancel the c-section and allow me to deliver him. We knew it was a long shot because we really weren’t able to get a good reading when we tried any of the times before, but we knew God was mighty enough to cover this area.
 We showed up at the hospital on time and got hooked up to the machines. We ran almost a perfect tracking of his heart for over 30 minutes and waited desperately for an answer from our doctor on what he thought. It was a little after 11 that they decided to let me go forward with a vaginal delivery. We were transferred to a room, an epidural put in, my water broke, and then we waited. My epidural wasn’t a choice, but they had to get me fully prepped in case we needed to rush in for an emergency c-section if his heart did not tolerate the labor process. We cruised through the labor process with the whole thing taking only 2 hours total from my water breaking to having a baby. My doctor came in at 2:00 to see our progress and said, “Ok, we are ready for a baby.” In that moment it was like someone paused my life. As my doctor walked out of the room to prep the team for Jackson, I began to weep uncontrollably. My husband was awesome at just being there to comfort me and hold my hand.

It was almost as if I felt like I had just walked out of our first appointment where we found out about his heart and then someone just pushed fast forward through all of our most difficult times and pushed play on the moment that we had been waiting for. I felt a mixture of extreme excitement and fear of the unknown at the same time. I just kept thinking about his little heart and if it would be strong enough. All the waiting time and we were finally here, the moment I had been fighting for.

Only four minutes of pushing and he was out. Pain free, peaceful, and incredible. He came out kicking and screaming, a sound I will never forget. I got a small glimpse of him before he was rushed out to be hooked up to all the monitors. Chris followed with him and for a little bit of time I laid there in bed wondering what was happening. Was he ok? What did he look like? Was Chris taking enough pictures for me? And then the moment came. The door opened and I watched as they carried him through the doorway all swaddled up. I didn’t expect to be able to hold him that soon, so I was shocked when he was placed in my arms.  He was perfect. The moment was perfect. It was everything I had dreamed it would be.  I didn’t know if we would ever be able to hold him that way and everything in me just felt complete joy.  I only got a few minutes with him before they took him up to CVICU, but in those moments it was if the world stood still. There have been great moments in my life, but none as great as that! Welcome to the world Jackson Oliver!

Tuesday, September 6, 2011

September 6, 2011 (Day 111) Letter to Jackson

To my little Jackson,
As the days have drawn closer to your expected arrival I have often wondered what my last journal entry would be before I meet you for the first time. As I woke this morning with tears I knew in my heart that the last words of this part of the journey were meant to be that of my heart for you. It’s been quite the journey we have taken as you have grown inside of me. With each new stage along the way many emotions have come, but none greater than a deep, deep love for every tiniest part of you.

I am overwhelmed with emotions as I think about meeting you for the first time tomorrow. There was a period of time I didn’t think I would ever get to see you. I think back to our doctor questioning whether your dad and I wanted to stop with this pregnancy and start over. Without even seeing you, I want you to know that I could have started over for the rest of my life and never even touched on the incredible gift that you are to me.

Someday when you are old enough to read the story of your life I pray that the pages of this book reveal to you a greater love than anything this world has to offer. That with each word you would see the faithfulness of God over your life even as you were being formed. Where doctors diagnosed, God knew better. Where statistics were given, God chose you to overcome. My prayer for you is that as you grow in life that you would also grow in your admiration for who God created you to be. That the scars on your chest, the pacemaker inside of you, or whatever is needed to save your life, would be physical reminders of how much you are loved. That instead of looking at your life with some restrictions that you would look at it with all the promises that God has given you.

Your life has forever changed mine. You have taught me more than anything has been able to before, you have challenged me more than anyone I have known, and you have pushed my heart to grow in ways that I never imagined. As I have watched God use the tiny seven pounds that you are I stand amazed at all the possibilities that your life has to offer as you continue to grow. There are parts of me that fear, but much more so a huge part of me that is so excited to see where God will take you and your “special” heart.

I will always be with you on every step of the journey. I can’t make any promises for what lies ahead, but I know that just as I will hold your hand in the NICU tomorrow, I will hold your hand through anything that comes your way. There is nothing your dad and I won’t do to give you the best life possible. Whatever it takes, wherever we have to go, and no matter the sacrifices, we will continue to fight for you. You have always been and will always be worth fighting for. It is my greatest joy to bring you into the world tomorrow and one of the highest honors of my life to be your mom. I am so proud of you already as you have exceeded expectations, blown statistics out of the park, and pushed past milestones. You are our daily miracle and I thank God everyday for another chance to experience the life that you are growing into.

I look back at my first entry and I think of the extreme pain we felt as we thought we were losing you. I think about today and how we are one day away from the very start of your life with us. What a journey it has been. I have spent many of days crying for you, praying for you, and fighting for the opportunity to one day bring you home. Baby Jackson, keep strong, keep fighting, and keep kicking away. We are just steps away from our dream of opening the door of our home and carrying you through.

Jackson Oliver Elliot, you are loved beyond any words I could write on a page. Get some rest sweet boy, because tomorrow it’s Go Time!

Love you,


Friday, September 2, 2011

September 2, 2011 (Day 107)

When we lost our 2nd baby in a miscarriage I felt trapped under a mountain of emotions that were difficult for me to process. We followed advice from others on practical ways to get through that period of time but even after things like naming our baby, talking through our emotions, and praying through the hardship, I was still left with this heavy weight on my shoulders that I couldn’t shake. Finally one day I realized that the emotions that I was having were directly related to the fact that I had never been able to express as a mother my heart towards that child. That all the love, all the excitement, and all the joy of becoming a parent again were never able to be communicated. I never got to tell our baby that I loved him/her. I never got to hold their precious body or kiss their soft cheeks. I sat down at my computer and I wrote a letter to our little baby Jaiden. It took a long time and after lots of tears I finished the letter and signed it “Love, Mommy.” There was an overwhelming peace that came over me as I was finally able to express my heart as a mom to a child that I truly loved.
In the same way, as we draw near the end of this pregnancy with Jackson I have so many emotions, so many fears, and yet so much excitement as well. I fear what could be, but I anxiously wait to see the awesome things that God is going to do. I think about his little tiny heart and how it has been stable for long after the doctors said it would be. I think about God’s provision on our lives as we have traveled this long road and I can’t help but be reassured that his life will be nothing short of a miracle. Everything and I literally mean everything has been a miracle leading up to this point so why should we doubt now? Has God not covered every single detail with such compassion and excellence? Has He not provided above and beyond what we could have ever imagined?

 When we stood before the test of receiving the news about Jackson’s heart, my first response was, “God, there is only one choice. Only one option and I don’t know how to do it, but I know that you do.” We surrendered Jackson to the only One who truly knew the complexity of his heart, the future of his body, and the plans for his life. Every day I wake up to learn more about the love God has for me, my family, and for the world around me because of one little baby boy. Where I thought things were impossible, where finances wouldn’t stretch, and emotions were unbearable, I watched as God gently sorted through the mess and created a beautiful story which is unfolding as we wait for Jackson to come. His comfort, His peace, His love, and His grace is the only reason that we find ourselves in an apartment by the world’s largest freestanding medical facility with some of the nation’s best medical teams waiting for a small bundle to join the world. They are ready for a baby with a broken and dysfunctional heart, but God we are ready for a miracle. We stand in faith that this next chapter of our lives will be nothing less than a reflection of the incredible God that you are. A God that cannot be described, nor confined to words on a page, but a healer, a provider, and a God that performs miracles just as much today as you have throughout history. God we stand in awe of you and we know that Jackson’s heart is nothing short of an amazing plan that you have complete control over.

Tuesday, August 30, 2011

August 30, 2011 (Day 104) Do not be afraid

Over the last several days Ava has been experiencing some weird symptoms which suggest some possible serious complications. I have been trying to calmly approach these symptoms as they appear trying to not overreact to what could be just a fluke thing. As the days pass, anxiety builds and as each symptom remains I find myself letting go of any calmness that was there before and replacing it with deep concern. I contacted our nursing coordinator for Jackson yesterday evening to schedule an appointment for Ava today to have some blood tests done to show any signs of complications with her liver.

I tossed and turned all night as I lay next to her in bed. I kept just looking at her beautiful face and wondering what to expect from today’s appointment. I found myself paralyzed with fear throughout moments of the night as I thought back to our doctors appointment for Jackson. One day, one hour, one appointment, that was all it took to turn our life upside down. In a small amount of words came a diagnosis that crippled us to our knees. Since then our lives have been drastically different.

I think about going into an appointment today with Ava and the very thought of anything being wrong with her causes my heart to ache. “Lord, I can’t do anymore right now. I can’t do any more anxiety, any more worrying, any more pain.” As we prepare for her appointment today we also prepare for two different appointments for Jackson as well. We go in for a growth & bio physical profile ultrasound as well as meet with our OB to see if anything has changed since being hospitalized last week. With each of his appointments brings a lot of unknowns as we are approaching the very last part of this pregnancy and preparing for how he will be delivered safely. We are still waiting to see if he can handle a delivery or if a c-section is needed to keep his heart strong enough for whatever comes after that.

As a mother I sit here in the early morning light thinking about my precious kids and it brings me to my knees. It’s so easy to at times to let go of the things you feel ok with not controlling and surrender them to the Lord. It’s not easy to surrender the very things that you hold in the highest regard. But, who I am to think that I can take better care of my kids then my loving God? Who am I to think that my love for them is greater than the One that created every tiniest detail of their bodies?

“And the LORD, He is the One who goes before you. He will be with you, He will not leave you nor forsake you; do not fear nor be dismayed.” Deuteronomy 31:8

God, we cry out for healing for our kids. We pray over their bodies that you would take the symptoms, the complications, and the physical pain away from them. We pray that you would guide and direct the hospital, the doctors, and our decisions as parents to bring light to anything that is needed for their health. Lord I pray that with everything in our lives that you use our faith to speak to our kids about the greatness of who you are. That they would watch us trust in you and that they would grow in their faith even as young children. God, we need your comfort today.

Sunday, August 28, 2011

August 28, 2011 (Day 102) So close…

So much has taken place in the last week that we have found ourselves too busy to even sit down and write out the events that have taken place. Late Tuesday evening (August 23rd) I began feeling consistent contractions that led me to call the hospital and rush in to be monitored. I was in the Houston at that time with only Ava and my Dad, so we made the call to Chris to jump in the car. I was admitted into the hospital and there began one of the most stressful and emotional parts of the journey thus far. As I laid there in a small bedroom hooked up to multiple monitors I looked around and thought, “Why God, just simply why?” I spent the next two and half hours waiting for my husband to get there all the time thinking about what was going to happen if he didn’t make it in time. The very sight of him walking around the curtain was probably the best present I have ever received. I spent the next two nights in the hospital under close observation as we received the news that I am now 5 cm dilated but still not in active labor.

We were discharged from the hospital on Thursday where we then went to the Ronald McDonald house. We were able to find an apartment in the medical area that will give us a consistent home away from home rather than living out of a suitcase. We are to stay within a few mile radius of the hospital because when it’s time, it’s going to be quick! We spent the weekend amongst lots of family as Chris’ parents flew in and most of my family had made the drive up from Austin to be with us. I wanted to post some pictures of our time together over the last week.

In between these snapshot moments have been very deeply emotional times. The stress of rushing to the hospital, being on edge as to how he will be delivered safely, and trying to do what’s best for our family have led to many tears along the way. It has been and will continue to be a very difficult and exhausting battle. As I fight against the feelings of inadequacies as a mother, I look at these moments captured by our camera along the way and it gives me hope that one day our life will be somewhat normal again. That there will be days without tears and heartbreak.  I long for the day to see Jackson’s face and hold his sweet little body. Every day is an upward climb and fatigue has set in, but I know that we are mere days away from seeing the next chapter of our lives. 

 My favorite visitor to the hospital!
 Taking time to thank the awesome nurses that kept me pregnant for a bit longer!
 Discharged from the hospital and at the Ronald McDonald House.
 A little family time in between moving locations.
 Learning to ice skate with Daddy.
 Found cute elf pajamas for Jackson at the mall.... love Crazy8 kids clothes!
 Having contractions, but my favorite buddy is reading me a story!
 Rainforest Cafe!
 My sister and I at lunch.

Friday, August 19, 2011

August 19, 2011 (Day 93) Rivers of Living Water

It was about a month ago that while I was reading my devotion for that day that God spoke to me to flip forward to read September 7th’s devotional. At that point it was set as Jackson’s due date. As I flipped through the pages and landed on September 7th, I started to read in amazement one of the biggest promises that God has ever given to me. I read it over and over and sat there in one of the most powerful times I have had with God. I shared this promise with only my husband and my sister Amy and then when I woke up this morning God stirred in my heart to read over it again and to share.

The promise comes from John 4:14-
“The water that I shall give to him will become in him a fountain of water springing up into everlasting life.”

As I began to read the devotional under this verse in My Utmost for His Highest, I was blown away. An astonishing 19 times in a small three paragraph devotional writing were the exact words and phrases that our doctors have been using to describe Jackson’s heart medically. These very words such as flow, vital, obstructing, steady, and defect are words that have been tossed around his medical condition for the last several months each leaving its own stinging effect with it. Each time we hear these words they are associated with odds, charts, and diagrams of his “special” heart.

I sat there in amazement as God led me through these very same words but in the form of a promise for my son. Rather than the words leaving a painful stamp on my heart, the words gave me peace and comfort as God gave me a promise that out of my son “would flow rivers of living water.” That he would not be defined by his heart medically, but by the very way in which he receives blessings and pours them out freely. That his life would not be one that is hindered and lifeless, but that God would use all the unknowns of his life to create a beautiful fountain in which others would see the love of a Savior.

 I have clung to this promise in my good days and my bad, trying hard to fight against the doubt and fear. I have a God that knows me so personally and knows every detail of our situation that He would lead me to a library shelf to pick out a book, to flip to a page that was dated the doctors choice for Jackson’s birth, and fall to my knees in awe of what He is going to do through our little boy. That in the midst of feeling helpless He would declare victory over Jackson’s life and claim him for His own. The love of a Savior, the compassion of my God, the care of my Heavenly Father, never ceases to amaze me. In my hardest days, I hear “and out of him will flow rivers of living water” and I cling to the very promise that Jesus Christ has marked my son’s life with an awesome plan. One that will spring forth life where there is none and shower forth blessings to the nations.

Wednesday, August 17, 2011

August 16, 2011 (Day 90) The Perfect Phone Call

It's only Wednesday, but this week has had its fair share of ups and downs already. Monday started with two different appointments that went horribly wrong. Since my doctor is out of town this week I was set to follow up with a doctor who actually had an emergency as well, so I was placed with another doctor that was not up on all the information. I made it through the appointment and then waited for the next ultrasound. I grabbed a tissue and walked out into the hallway and collapsed into an emotional breakdown. I cried, went in for an ultrasound that was extremely confusing as well, and then I cried some more.

Tuesday brought a better day with a great appointment as always with Dr. Ayers as we did another echocardiogram (heart scan). She is so incredibly smart but so personable that she puts you at ease even when every part of your body is stressed. Jackson's heart is stabalized and is still maintaing its normal slow beat with his heart block. She spent time talking with us about all the different things to expect with his heart and started reassuring me that everyone was on board for giving him the best care possible. I just love the time we spend with her. I find myself oddly looking forward to our appointments with her even though I truly wish Jackson's heart was functioning normal. She has been and always will be an answer to prayer for us!

Wednesday kicked off with Ava heading back to Austin with my mom to spend a few days with Chris. It was hard to say goodbye to her, but I know she will enjoy her time back in her "normal life" for a few days. I was doing pretty good and then came a few very stressful phone calls that set me back emotionally and I just sat and cried. It just seems like even the things I try to plan and control seem to become the unknown and amongst everything going on, it makes me feel so completley helpless.

My phone rang and I almost hesitated to answer it. I picked it up and it was Carmen our nursing coordinator. She spent time talking to me about my appointments this week, what to expect next week, and everything after that. She was understanding, compassionate, informative, and so helpful. She just took time to calm my nerves, answer any questions I had, and reassure me that everyone is very informed on our situation. It was the best part of my day talking with her! I hung up the phone and I felt a rush of confidence come over me and found renewed strength to keep going. It is my prayer that anyone who ever has to travel the road of medical turmoil has a Carmen to walk along with them. Someone who has answers, who is willing to go the extra mile, and who becomes a friend in the process.

So to Carmen, someday if you ever read this, just know that the work you do has a much bigger impact than you know. That your phone calls, your appointment setting, your tours, and your job decription is helping famlies all over the place find a new wind to keep going when all else gets unbearable. That amongst the stress and the unknowns, your voice becomes the calming of the storms. You are wonderfully gifted at what you do and appreciated  more than you will even know! We are so thankful for you!

Sunday, August 14, 2011

August 14, 2011 (Day 87) Hard Goodbyes

Such a fun and restful weekend we had in Houston as Chris was able to make his way down to us. Chris arrived late on Friday night to Ava and I jumping up and down as we greeted him at the apartment. We spent the weekend doing some light shopping, eating out together, and Chris took Ava to the Gulf Coast for a bit on Sunday for some ocean fun. We found ourselves laughing, joking with one another, and enjoying the unified time we had together. All this while dreading his Sunday night departure.
Ava & Chris at the beach 8/14/2011

We finished up our time together eating some great pizza at BJ's where Ava was at her funniest. She had us tearing up with laughter as she creatively came up with new phrases, quoted from movies, and played pretend voices with her stuffed animals at the table. We returned back to the apartment and dug out some stuff for Jackson, one of which being a baby carrier. Chris & Ava being goofy raced around the house with her in it. She sat completley in the wrong position but squealed with delight as Chris galloped around. That joyful sound of laughter was music to my ears as I watched them just being able to enjoy the last of their time together for the week.
Just for laughs.... Ava sitting crazy in an infant carrier! 8/14/2011

Chris laid Ava to bed and with no surprise came out with misty eyes. We sat and talked for a bit, but with 10:00 rolling around we knew it was time to say goodbye. We hugged for a long time and I held it together better than I thought. It wasn't until I watched him wheel his suitcase away from me that the tears began to flood down my cheeks. Another week ahead without seeing him. More doctors appointments without his hand to hold and his smile to reassure me that it is all going to be ok. Oh, Lord I am so glad that we can fight for Jackson, but I just wish we could all do it together. I have realized that I am just no good without my better half. But, we know the sacrafice is worth every bit of the heartache. So with hard goodbyes tonight and in the weeks ahead, we push forward because we know that with every lonesome night we are one step closer to our family of four!