Friday, February 19, 2010

anniston's story

I’ve been feeling the Lord leading me to rewrite our story with Anniston in a more condensed version lately. I know that God has brought us through so much and has not called us to keep this story to ourselves since it is intended for His glory.

Just yesterday, I heard of something unbelievably tragic that a precious friend is going through, and it just broke my heart. I can’t quite wrap my head around how something so painful and difficult could happen to someone like her. Our story doesn’t come close to that kind of pain or the pain of many others, but I do pray that someone, even if it’s just one person, will find hope in Anniston’s story so far because through EVERY step our family has taken, He has in return been faithful and merciful. In the hard times, as well as the good times…He has held us.


Our Story

Disclaimer: Condensed is probably not the operative word when describing this post. It’s actually rather LONG (sorry!)… If you already know our story, it's redundant, fyi :).

On January 30, 2009, I woke up excited. It was a special day…the day we would discover whether we had a boy or a girl on the way. Upon sitting down to read my Bible, I felt led to revisit the chapter I had read many times in the months leading up to this day: Psalm 139. I always loved how it spoke of a God who knew us before we were even born and who knows the depths and secrets of our souls. It had on more than one occasion left me with a feeling that I was special in a way that I could not comprehend, and this passage had become even more meaningful to me as I thought about the place that our baby already had in our Father’s eyes.

On that day, though, a verse jumped out at me, and I could not shake it from my mind. It was as if the Lord had blinded me from ever having read that particular scripture even though I knew my eyes must have at least glanced over it on previous occasions. Psalm 139:5 “You hem me in behind and before and lay your hand upon me.” I am serious as I could possibly be when I say that the very first thought I had after reading that verse was that “we would stand.” Someone greater had whispered those words, but they were soon to be forgotten. It was a special day.

Thinking only of how exciting it would be to see our baby moving around and wondering what in the world its name would be if it were a boy, we walked jovially into the doctor’s office, although we did not have a regularly scheduled appointment with her that day, just a sonogram. The ultrasound tech took a good look at our baby, measured her, captured detailed images of all of her organs, and told us that we were in fact having a girl. Stan and I were so excited that we barely noticed the tech excusing herself for a moment. A thought jumped to my mind that it seemed strange that she was leaving, but I quickly dismissed the idea and continued talking in amazement with Stan about the sight we had just seen. Before we knew it, the tech was back, asking us to follow her to our doctor down the longest hallway I have ever walked in my life. I remember grabbing Stan’s hand and telling him that we shouldn’t have to see the doctor unless something was wrong. After waiting quietly in the room we were assigned, our doctor walked in, and she told us not to panic but that something looked strange with our baby’s heart, like maybe she had a hole. An appointment was made for us with a specialist, and from that moment on, we would no longer have a “normal” pregnancy.

When we sat in the car, the verse from earlier that day resonated in my heart. He was there with us from the beginning, before we even had an inkling of what the next few months would hold, and He was helping us to stand. I cried as soon as I could be alone with Stan in the car, and he was so strong. We prayed, dried my tears, and called family, friends, and even posted on this blog to tell our good news that we were having a girl. Knowing that some types of holes close on their own and not wanting to worry anyone over nothing, we decided not to say anything about what the doctor told us since the specialist had not yet confirmed what was seen.

Two weeks later, we travelled out of town to see the specialist, sure that there must have been some mistake. Stan and I even planned to have lunch at one of our favorite places after the appointment and to register that afternoon. Needless to say, our plans did not come to fruition. The specialist, ultrasound tech, and cardiologist each looked at our Anniston that day, and they all came to the conclusion that she had an Interrupted Aortic Arch (the aorta was not connected) in her heart and that this had caused the VSD (hole). They tried to explain it to us, and I remember Stan getting really pale and almost passing out. So, I’m laying there, trying to understand how serious this issue was when the cardiologist tells us that one in 100 children have some form of heart defect and that 4% of that 1% have a condition as advanced as Anniston’s. The cardiologist said that it was very rare and that she only knew of one other child in our area who has had this defect, and he is now 7 years old. Wow. Okay, now it hit me.

That day was horrible and wonderful, all at the same time. Stan and I cried and prayed like we never have, and we began to seek God like never before as well. I had never seen my husband more broken or felt closer to him than I did that night. It was hard to realize the trial we were facing, but it was encouraging to already see the Lord working in such a powerful way in our lives and in the lives of those around us.

From that day forward, Stan and I were strongly convicted that we needed to speak life and health over Anniston (Proverbs 18:21) and that we needed to give her to her Maker, who was and is the only one who could heal her. It was tough. We were constantly trying to keep our faith up without realizing that, yes, we do need to trust completely, but that in the end, it’s all about Him and His glory. A miracle would have nothing to do with anything we did but in everything He has already done. It was difficult going back ultrasound after ultrasound and receiving practically the same diagnosis, but God was holding us and allowing us to stand.

He DID do so many miracles through her during my pregnancy. Physically, the right side of her heart was double the size of the left side in the beginning, but then, miraculously, during one of our last ultrasounds, the specialist saw that her heart was symmetrical! He kept saying that her heart, from a distance, looked just like a textbook heart. Also, when babies are in utero, there are special ducts that carry blood to and from the heart so that the baby's heart is perfectly healthy while inside the womb. The Lord held her. And us.

Anniston made her grand appearance into this world very early in the day on June 2, 2009, a seemingly healthy little girl. On the outside. Late that night, she was flown from Jackson, MS to Philadelphia, PA (The Children's Hospital of Philadelphia- CHOP) to get settled and prepared for her surgery scheduled to take place a few days later. The procedure went amazingly well (glory only to our Lord!), and she recovered like a champ. There were several bumps in the road not limited to, but including an infection in her incision, blood in her stool, and an episode where she struggled to breathe, BUT there were so many “God-moments” along the way that overshadowed every hiccup along the road. From hearing that her surgeon trusted in the Lord to work through Him, to the doctors “just so happening” to be doing their rounds right beside Anniston’s bed as she stopped breathing, God was at work big time, and we were humbled to be on this journey with Him. (I posted every day/other day the month of June if there is a heart mom or dad who would like more details.)

After returning (gladly!) home, our month-long experience in Philadelphia began to fade into a distant memory, but wonderful testimony, as we moved forward with life out of the hospital. Anniston had wonderful check-ups and seemed to be improving every day until we went to see her cardiologist the middle of September. At this check-up, we discovered that her aorta had narrowed significantly in the place where it had been repaired, which would affect her growth according to her doctor. With this type of narrowing, they decided to do a short, outpatient procedure (one night in the hospital; not surgery) called a heart catheterization to open up the aorta.

To make a really long story just a little bit shorter, I will say that Anniston’s heart cath went extremely well with regard to her heart, but about 24 hours later, as she was coming out of her sedation, she began to seize and we were told that she had suffered a major stroke affecting the entire left side of her brain as well as a smaller stroke on the right side due to this procedure (To read more details about this event, you can read this post; If a heart mom is reading this, please know that the chance of this occurring is EXTREMELY rare. You have absolutely nothing to worry about If your child requires a cath. It’s a very simple, common procedure).

Stan and I were numb. We could not believe the news that was hitting our ears, and I was honestly very weak in those moments, BUT GOD IS GOOD!! Trusting Jesus to heal was all we could do, and He once again proved faithful! She was barely moving until we brought her home a week later when she started to support her head again, move her right side (the side that was affected by the large stroke), make noises, smile, etc., much like she had before!

The end of December, we began to notice some movements in Anniston that were repetitive and strange. Soon after, we discovered that she was having some mild seizures due to her strokes. We were told that they were not damaging as long as they were under control, but it was honestly the most difficult time for us. Seeing her like that and feeling helpless was so hard. Giving her to the Lord was very difficult for me to do since it felt like our prayers were just hitting the ceiling. Every time I prayed, it seemed like she was just having more episodes. I know how it is to feel that He doesn't hear you. It was hard, but we just kept getting a word from the Lord that we needed to persevere. Stan has always been so strong, and he didn't seem to struggle as much as I did, but it was amazing to see that in the times when I was down, he was up, and vice versa. I can say today that Anniston has been completely seizure free for exactly one week and one day!

Anniston is the sweetest baby and is happy and progressing so very well. We had a check-up at her cardiologist recently, and her heart looked perfect and whole...better than they could have ever expected. If you only knew the healing that has taken place in our little girl. More than once. We are eternally grateful to our Lord for touching our family with His grace and peace, and we HAVE to give Him praise. Thanks for taking the time to read our wordy story :).

***Update February 9, 2012:

{photo courtesy rachel kabukala}

Anniston is doing wonderful!!! She has now been seizure free for two years!! Her doctor is okay with us weaning her off of her seizure med, but we have decided to wait a little while longer. Due to the weakness on her right side from her stroke, she began taking her first steps at 22 months, and she is walking SO much better now at 32 months. We still have some things to tweak with her mobility (improvements in standing still, walking barefoot, etc.), but she is doing fabulous. We are praying also for improvements with her right arm and speech, but we have been so very blessed with how well she is doing. Her neurologist is always amazed at her progress. Anniston should have had more issues with her immune system, but she has overall been a very healthy girl. Praises!! AND, her heart is still looking PERFECT! We are now visiting the cardiologist ONCE a year! (As good as it gets for a heart baby!) God is good!

Oh, ALSO, Anniston started attending Mother's Day Out two days a week and loves it :). She is growing and learning so much these days.


**I know that there are some people out there in the depths of despair, and if you are reading this, I am so terribly sorry. I have no idea why sometimes our prayers aren’t answered like we thought they would be…maybe because we wouldn’t need God if they were. I don’t know, but I do know that God is not finished with you and that He has an amazing story ahead for you if you will just keep your trust in Him, as difficult as it may be. The enemy would love to steal our joy, but God promises the opposite. He promises to turn our weeping into joy (Psalm 30:5, 11) and to perfect what concerns us (Psalm 138:8). Please keep trusting as He writes the story of His love into your life.**

Tuesday, February 16, 2010

about seven posts in one :)

Anniston is only allowed to be around small groups of people the first year of her life, so on the rare occasion that we go to the grocery store or to church with her, we typically keep her in her carseat to limit the amount of contact she has with others. Some people are okay, but lots, especially in the winter, are best to be avoided. SO, as you can imagine, the bigger she gets, the less motivation I have for hoisting her, along with her seat, around town.

Then, my dear sweet mother comes into town. For nearly an entire week. She and my dad come often for a few days at a time, but since they tend to my grandmother, a week is not always feasible. The poor woman was barely able to visit with her own daughter because I was steadily out running errands, taking time to pamper myself, and just simply wandering around in the world outside of this comfy bubble I've managed to form. It was wonderful.

And yet, somehow, I'm left with this feeling that I wasn't missed :).

Thank you, mom, for your help. It seriously was MUCH needed and continues to be appreciated more than you could possibly know.


Now, about the snow...

I live one hour from the Gulf of Mexico, and this is the second snow I've seen this winter. AND, they've both been over an inch. We were SUPER excited, to say the least!

Pardon the pink Valentine snowwoman with eyes on the top of her head. I've decided she's praising Jesus.

I've been meaning to share these rainboots with you guys. My wonderful, amazing in-laws gave them to me for Christmas, and I LOVE them! You can check them out here. Thank you, Martins! They were perfect for our snow day!


As the weekend approached, I decided to bake Stan's V-Day gift, and come to think of it, I think I bake him cupcakes every year for Valentine's Day. And, I'm pretty sure I always make strawberry ones which just so happen to be my favorite. *Slap on the hand.* Will have to do better next year. Oh well, I wanted to share this with you because I tried Martha Stewart's filigree garnish technique (from this month's issue) to make these chocolate hearts, and they are super simple. All you do is melt bittersweet chocolate, cool slightly, pipe your shape onto parchment paper, freeze for 15 minutes, and apply to whatever baked sweet you're making. So very easy and fun!


Wow, this is getting long...

Then, my dad came Saturday so he could take my mom back home on Sunday. This is commonly how I find him and Anniston...she loves her grandpa.

Thanks, dad, for giving mom up for a week. And mom, thank you again for all of your help!  Not to mention the quality girl time we had :).  I love you both!

More fun to come since Stan's parents are coming into town this weekend! Anniston's one blessed little girl.

Oh! And, I've been meaning to tell you that she's been completely seizure free since last Thursday!! God is so good!! Thank you for praying!!!

Saturday, February 13, 2010

a year and a day ago

Did you know that a Congenital Heart Defect (CHD) is the most common birth defect and the least common screened for?  I knew that this month was Heart Health Awareness Month, but I was just informed that this week has been CHD Awareness Week.  Exactly one year and one day ago (for anyone new to our story), our lives changed forever because we learned that our baby girl, Anniston, had a heart defect called Interrupted Aortic Arch, which was accompanied by a large VSD.  We were blessed to learn of this defect before her birth so that we had time to cope and fervently pray, but there are countless others who do not have the privilege of knowing this life-altering news prior to the birth of their child.  

I regretfully have not shared much about CHD, but I want to do a better job of keeping others informed as well as offering as much hope as I can.  There IS hope!!  Our little girl is doing absolutely wonderful, and I know that our Mighty God loves and has His hand on all of His precious heart babies!  

If you have some time, click the link above to learn more facts about CHD.  It is very eye-opening to see the many improvements that can and should be made concerning CHD, particularly when it comes to CHD research.  

Thanks for taking time to do this!  Much love!

Psalm 145:8  "The Lord is gracious and compassionate, slow to anger and rich in love!"

Tuesday, February 9, 2010

to remember.

This is Anniston's sleep cue.  Whenever I see her hand on her head, I know she is asking for her bed.  There are even times when I am holding her in a standing position on my lap, and she will attach said palm above her ear, bow her head, and buckle her knees.  She's ready for bed, and she makes it known.  Just something I always want to remember :).

Sunday, February 7, 2010

Wednesday, February 3, 2010

eight months!

Anniston is officially eight months old as of yesterday.  Crazy.  I love this little girl.  

She has become the snuggliest (word?) little bug over the last couple of months, and of course, it warms our souls.  She will just plop her chubby cheeks on our chests (alliteration?) and cuddle away.  

To have such a sweet baby, I never thought it possible.  I can lean over her, and she will just run her fingers through my not so lovely locks and look at me with her sparkly, loving eyes.  She doesn't even attempt to pull at my hair.  So sweet.

Her feet are finally growing!  I think we may actually be in 3-6 month shoes soon :).

Her physical therapist says that her sitting balance is coming in very nicely, and we are sooo excited!  She's even sat up on her own for a few seconds at a time this week.  With all that Anniston has been through, this is awesome!!  I'm so proud of her.

Have I already mentioned that I love this little girl?