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!

Friday, August 12, 2011

August 12, 2011 (Day 85)

"But it is when a crisis arises that we instantly reveal upon whom we rely. If we have been learning to worship God and to place our trust in HIm, the crisis will reveal that we can go to the point of breaking, yet without breaking our confidence in Him."
- taken from My utmost for His Highest by Oswald Chamber (August 12th devotional)

I have watched over the stretch  of the last several months God's faithfulness take over every detail of our lives. I've watched as we pray over concerns, worries, our emotions, our plans, how God has covered every area above and beyond what we could have hoped for. As I was reading my devotion this morning I was reminded to look back over His promises and His provisions. It didn't just start when we found out about Jackson.

I think about when Chris & I were dating and the things that God even began to lay on our hearts back then that prepared us for this very season in our lives. God has gifted us with a friendship within a romance. God purposed in our hearts a deep devotion to Him as well as to each other from the very beginning. We have always worked very hard at maintaining a blanced and loving marriage in which we could just enjoy each other and raise our kids in a home where love overflows. I think back on our history together and I see how God prepared our marriage to brace the storm. I wake up each day with at times unbearable heartbreak and great levels of stress, but in a beautiful love story that unfolds more of God's grace each and every day.

I think back to deciding to be a stay at home mom and the sacrafices that it has taken along the way. I look at how God's hand has carried us through every season and how that decision is allowing me everyday to be where is needed for the care of my son. God gave me a heart of staying at home with my kids as early as I can remember. It's always been such a deep desire of my heart.

I think of the family and the friends that God has brought along the way and how they have been the crucial support and encouragement that has been so precious to us. So many from all over the world have come alongside of us to pray and love on us.

It is in worshipping God and thanking Him for His amazing provision in our lives that has allowed us to face everyday with renewed stregth. We didn't just wake up one day and say, "Ok, we can do this." Over the period of our whole lives God has been getting us ready, preparing our hearts, giving us giftings and desires to make this season of our lives where we can honestly be more confident in who He is than ever before. It is in this trial that we have been constantly reminded that this was no accident, but God's perfect timing and perfect plan. The preparation is amongst the hardest part of the journey, but when the trial hits, oh the joy in being able to say from the deepest part of your heart, "It is well with my soul."

Tuesday, August 9, 2011

August 9th, 2011 (Day 82) Wait, what did you say?

We got settled in to Houston last night and headed to bed early for our appointments today. We kicked off the morning with an ultrasound in which they found everything to be stabalized still with his heart. His heart rate is at 67 beats per minute which has been his norm for the past 3 months. They performed a movement test on him as well to make sure that he is doing well and he passed with flying colors. In just a week and half he has gained another pound leaving him at about 5 lbs 14 ounces today. I laughed nervously as they talked about how good that was. I couldn't be happier that he is growing stronger and bigger everyday, but I will admit that the anxiety is growing a little bit everytime someone tells me he is going to be big... ok God, I still have to push him out!

Then we waited for our next appintment with Dr. Ivey my OB. We talked through how I have been doing and I expressed a little concern over some contractions I had expereinced over the weekend. He suggested we just check to see if anything happened as a result and then the storm blew in. He checked and sure enough those contractions had been very real. I am 2 cm dilated, 80% effaced, and he is positioned low and ready for delivery. He calmly talked over everything with me and ordered me to rest for the next two weeks hoping that we can get him to term (37 weeks). He told me to relax, don't push it, and spend my days resting as much as possible. I wanted to be like, "Rest, what's that?"

I am living in a different city from my husband with a 3 year old and 35 weeks pregnant with a baby that has odds out on his life. Relax? How do I do that? Jackson needs everyday he can get in the womb growing stronger to face whatever is needed after delivery. I kept thinking, "Lord, he can't come now." We left the hospital and I had a few contractions on the way home. So, here I am on the couch trying to rest but thinking of all the things that are going on. My mind racing, trying to hold back the tears.

Jesus, you have every day of Jackson's life in your hands. Before delivery, when he takes his first breath, and when he fights for his life. Make him strong, make him able, and prepare his body for what is needed. I trust you in your plans and I sureender my own ideas of what timing I think is right and wrong. Where science says impossible, I say "You don't know my God." Give us strength Lord to handle whatever is ahead. Your faithfulness is just as true today as it was yesterday. If he comes early may it be even more so a testimony of how great you are!

Monday, August 8, 2011

August 8, 2011 (Day 81) Houston Here we come!

When we found out about Jackson’s heart, we knew we needed a miracle… well, in fact we needed several. From the moment we came home from the doctor’s office we began researching miracle heart stories and facilities that offered that specialized care for our very unique situation. It came down to Philadelphia, Boston, Stanford, or Houston. We spent hundreds of hours researching the different facilities, doctors, statistics, and stories. We thought the most logical thing would be to start with Houston since it is the closest to us and then go from there if needed. Texas Children’s Hospital is ranked #3 in Pediatric Cardiac Care and also the largest free standing hospital in the country. From our very first appointment, we knew we hit pure gold. We prayed that we would not only find a staff of medically gifted doctors, but that they would also fight for Jackson as hard as we were. Prayers Answered! Next in line behind our family, this staff loves Jackson already!

So, it was settled, Houston was the place for us. But then what? How does that all work? When do we move, how do we move, how can we afford to move? All the questions flooded in and one by one they have been answered. Today, August 8th, we are making the move. After 81 days of praying through the details, planning like crazy, and watching God answer prayers, we have made it to this point.

Initially the doctors thought that Jackson’s heart would fail at about 27-29 weeks.  Here I am, bags packed by the door, going on 35 weeks pregnant, and ready to go. I didn’t know that it would be this difficult or emotionally draining, but what I do know is that I would have it no other way. A special heart requires a special love and that is exactly what I want to give my son everyday for the rest of his life. So with a heavy heart I kissed my husband goodbye this morning as he pulled off to work and just purposed in my heart that I am fully committing to fight the fight!

Over the next month I will be at multiple doctors visits each week as they constantly watch Jackson’s heart to see how it is holding up. I have my hospital bag packed so we are ready whenever they say “now”. If he waits like a good boy, we will deliver him on September 7th. Either way, in less than a month, we will finally get to put a face to all the love and prayers. With so much unknown and so many emotions flying around I am finishing the final walk through of the house to make sure I haven’t forgotten anything. It grieves my heart to separate our family during this time, but with each new day I have seen the three of us continually getting stronger. God’s grace has been and will continue to be sufficient for each new day ahead.

The doctors can only diagnosis, but they don’t know my God! So, here we go; another adventure, another chapter as we get closer to meeting our little boy. So as I close the door to my house I think to myself, “See you soon home sweet home. Next time I see you I will be carrying baby Jackson through your doors. What a day that will be!”

Monday, August 1, 2011

August 1, 2011 (Day 74) Beautiful Vulnerability

It’s taken me awhile to get back to blogging with all the business of planning our temporary move down to Houston. When we found out about Jackson we knew the road ahead would be difficult, but we had no idea all the millions of details it takes to fight for his life day in and day out. Our days our filled with doctors visits, long checklists, and preparation for his arrival. I found myself getting so into the practical that I threw myself into project after project. Whether it be sewing, yard work, unpacking the house, etc, I just needed to stay insanely busy with something so that I didn’t have to face the reality that in just a few short days I will take my bags and head to Houston with Ava for an unknown amount of time.

It was yesterday morning (Sunday) that I woke up exhausted from all the projects that I found myself wearily walking downstairs to sit in our office. I just stared out the window and I began to cry. The tears came harder and I lost myself completely into an emotional breakdown. I spent a good while there and then I heard the soft footsteps of Ava coming down the stairs. I tried to quickly rub the tears away, but I was so long gone. She ran into the room with a huge smile on her face and then I saw it. She glanced at my smeared makeup and wet eyes, her smile vanished and she lifted her arms for me to pick her up. She sat completely still in my arms and I started to shake as I cried. She didn’t move, she didn’t say anything. After a bit she looked up at me and gently took her hands and wiped away my tears. It was such a sweet gesture that it made me start crying again.

We have always tried to guard Ava from experiencing too much of our circumstances, but God has gifted her with such a mature intuition, that I know she understands probably far more than we think she does. I spent some time explaining to her some of my sadness and we just sat together for awhile. At first I felt so guilty for allowing her to see me breakdown, but then I realized that there was something so beautiful in that moment of holding her. She experienced all of my vulnerability and my emotions. She saw me in the raw and at my lowest. She saw that crying was okay and needed. That it wasn’t a weakness, but a way to process through times when your heart just aches. She watched as I pulled myself back together and how she brought a smile back to my face. She smiled at me and we began to laugh together.

 To my precious Ava,

I love you. You are without a doubt the most sensitive and compassionate person I have ever had the privilege to share life with and you are only three. You are wise beyond your years and God has gifted you with a gentleness that will bless people the rest of your life. May you always feel comfortable to be vulnerable when your heart aches and may you always seek Jesus when you are lost in the unknown. It’s okay to cry. I pray that through all of this that the vulnerable moments we share together give us a bond that is unbreakable throughout the years. You are my pride and joy, the one that can make me smile faster than any other, and an honor to grow in life with. I am blessed to have been given the role as your mom… I have a front row seat to the amazing things I know that you will do with your life! Thank you for sharing in that moment with me on Sunday. I won’t ever forget your tiny hands wiping my tears away and your sweet gentle smile. You are one of a kind honey!