9.19.2012

Wonderfully Made

I could feel the lump rising in my throat and my own heart pounding as I wrestled to understand the words we had just heard. 

"Mr. and Mrs. Chambers, I don't want to scare you, but I think you're baby has half of a heart."

The world seemed to stop as we took in them in.  Words that, at the moment, foretold a future full of uncertainties...a path that we didn't choose, yet were chosen for.  

In the week to follow the diagnosis was confirmed, our baby did indeed have "half of a heart", resulting from three complex congenital heart defects. (Tricuspid Atresia, Transposition of the Great Vessels and a Ventricular Septal Defect.)  One afternoon after an appointment, we found ourselves in a book store, pouring over a cardiology book from John's Hopkins, trying desperately to understand the unique design God had given our girl.

My 25th week rolled around and I was on a stretcher in an ambulance being transported to a larger hospital because the doctor's believed me to be in preterm labor.  The perinatologist was pretty frank with us...if she was born now, her chances of living were very, very slim.  Praise the Lord, after a week I was able to go home on bedrest and medication.

Our daughter continued to thrive and we witnessed many, many ultrasounds proving just how healthy she was, despite her heart problems.  But the summer was long and I had many dark moments.  My husband worked long hours and there I sat alone, day after day, praying and wondering what the next few months would hold.  
{38 weeks w/ Lydia}
Would a baby girl every come home to this little apartment?  Even if she did, would she live a "normal" life?  Multiple times a day I had to lay my fears at Jesus' feet.

On September 19th, 2003, I gave birth to Lydia Faith, at 9:10 am.  I only saw her for about 5 seconds before she was taken away, but I could tell at once that she was a healthy, strong little girl.  The cardiologists thought that perhaps she could even wait until she was six months old to have her first open heart surgery.

{Four days old}



But within the first few days it became obvious that waiting wasn't an option.  Signs of congestive heart failure were already evident.  At five days old she was moved to a larger hospital where she would undergo her first open heart surgery.  

{holding her every minute I could the day before her first surgery}
At 10 days old, we handed her over to the surgeon. Really it was not to him though, we knew it was to the Great Physician...she was already His anyways. As the day unfolded, it became so incredibly obvious how He was watching over her.  

It was a long, agonizing day.  The phone would ring in our little waiting room and we would all jump to answer, hoping for an update from the OR.  Things were taking longer than planned and we were trying not to worry.  Finally, after almost 8 hours, they said the surgeon was coming down to talk to us.  We heard the famous, "It went as well as could be expected" and were filled in on some details and told that we could come see her in a little while.  

After hearing the good news we all sank to our knees to praise and thank the Lord for what He had done.  It wasn't until later that we realized what had really happened...while we were thanking the Lord, He was seeing Lydia through the most difficult time in her life.  

On her way from the OR to the recovery unit, Lydia "crashed" and we were told later that they almost lost her. But that seemed only the beginning.  During the next 12 hours after surgery she had to have her chest reopened twice and she was having major bleeding problems.  In the words of the nurses (she had two with her constantly), she was "pumping it out faster than they could pump it in."  Twenty-six units of blood were administered in less than 24 hours.  Her kidneys were also not working and she was retaining so much fluid.

I'm not sure anything could have prepared us for the shock of seeing Lydia for the first time after surgery.  She was grey and almost swollen past the point of recognition...her ears had even folded completely in half because her head was so swollen.  Tubes and wires were coming out of everywhere, machines surrounded her, and she looked so tiny and helpless on that big warmer bed.  At that time cameras were not allowed in the unit, but I don't need a picture.  The scene is forever burned in my memory.

"And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." {Phil. 4:7}

That's the only way I can sufficiently describe that time in our life.  Yes we cried.  Yes, we worried.  But the peace of God is something beyond description.  If you've ever had it, than you know what I mean.

But that tiny baby girl, who then was fighting for her life, is nine today.  NINE.

Since that time, The Lord has her through another open heart surgery at 5 months old, and her last open heart at almost 3 years old.  Along with that she's been hospitalized for seizures and had three heart catheterization procedures.  
{Lydia soon after her 3rd open heart surgery.  Believe it or not, she looked awesome!}
To some, it may seem a bumpy road, one they would never choose to go down.  We, however, would never go back.  

"I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well. {Psalm 139:14}



Did you get that? Lydia wasn't an accident...she was wonderfully made. The specialists can call them "defects" all they want, but I know that she is a unique creation, made by the ultimate Interior Designer to bring Himself glory.


I am so blessed to be her mom....she is such a sweetheart.  She loves the Lord, desires to serve Him and looks at life with such a sweet and happy attitude.  Being "different" isn't a big deal to her, it just means God made her special. =)

At nine, she is becoming quite a bookworm, still loves dolls, finds great pleasure in bossing her brothers and adores her baby sister.  She likes fixing hair, digging in the mud, experimenting in the kitchen, and playing cowboys and Indians.  She can be so extremely girly and yet be a total tomboy at the same time.  LOVE it. =D  (You can see the rest of her school pics here.)
While this little trip down memory lane doesn't really do justice to all the ups and downs we've faced over the last nine years, it's so important to stop and reflect on the Lord's blessings.  Lydia really enjoyed reading this yesterday and hearing all that God has done for her. 

Happy Birthday sweet Lydia...we are blessed beyond measure to have had nine years with you!  We love you!!=)

21 comments:

  1. What a wonderful story of a pretty girl! Happy Birthday Lydia!

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  2. She is beautiful!! I cried reading this. Such a little girl going through so much (and mommy and daddy!) So glad she is healthy. Happy Birthday to Lydia! :)

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  3. Laine, that is just precious. I love the verses you put throughout the "story." They are perfect and it's clear that the Lord really impressed them on your heart during that time. Thanks for your testimony of faith and trust in the One Who knows all. Praise God for His healing power!

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  4. You can't help but just praise God for all He has done for her. She is beautiful! Thank you for your constant reminder of how good God is, even in dark times. I can't imagine what your family has been through, and to see you so at peace and so trusting God even in the midst of all that is truly a rebuke. But you've always been that way, so it's no surprise :) Perhaps you can share what you do on a daily basis, as far as spending time with God. It's easy to say "have devotions" or "read your Bible" but I struggle finding exactly what to do!

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  5. Bless you and your lovely little lady! What a story! I am in tears (and at work!) : )

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  6. God is good, all the time! Happy birthday to your sweet daughter. Thanks for sharing your story.

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  7. This brings tears to my eyes. God has His sovereign hand on your family. What a great testimony for Him!

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  8. bless you guys and your lovely little girl! Thank you so much for posting this story I'm 20 weeks right now and I have my appointment this week when they check the heart and kidneys and brain and all that and I'm incredibly nervous but I'm just trying to give it all to the Lord. This post has really helped me, thank you again!

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  9. Thanks for sharing, Laine. God is good all the time and works in mysterious and wonderful ways.
    We were on our knees many times on behalf of our firstborn's physical needs (a girl as well). Her condition was not quite as serious but did require immediate attention to prevent long term damage and eventually corrective surgery at 20 months. Five hours in the CHOP (Children's Hospital of Philidelphia) waiting room while nearly 8 months preggo with #2 was NOT fun.
    So glad that she is doing well. Happy 9 years to Lydia (and to you all!).

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  10. Laine, My family goes to church with your in-laws and my 8 year old, Kelsey, has gotten to know Lydia, and loves her! I had no idea about this story, but thank you for sharing! It was such a blessing! Tell Lydia that Kelsey says, Happy Birthday! And she can't wait until she can see her again!!! Shannon :0)

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  11. My heart wrenched for you when I read this. What a bumpy path you and Lydia had to go down. So glad and thankful how it's turned out and what a witness to God's goodness and healing. Happy Birthday to your special girl!

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  12. Laine,

    Thanks for sharing such a beautiful testimony of how the Lord has met you, your husband and precious daughter in such difficult and trying times. He is faithful. And your daughter is darling-a living testimony!! My youngest one LOVES to hear his story of how the Lord protected him through complications and how so many prayed for him!

    Blessings to you from a sister in Christ and pastor's wife in PA,Liz

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  13. I remember hearing some of this story and being updated while we were still at college. Remember thinking - that could be us - newlyweds, going through something like this, and how would we handle it. I am sure that going through this has made your faith stronger, your marriage stronger, and so much more! Praise the Lord for all He has done for you and Lydia!

    Will she face more surgeries? She is such a pretty girl - takes after her momma!

    so precious that she has this to look back on and maybe even read when she is an adult and faces a difficult time in life.

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  14. What a blessing to read Lydia's story. She is exactly six days older than our youngest son, Timothy. :) She is a beautiful girl and a true picture of God's grace. May the Lord continue to bless her and her family as they give HIM the glory for the gift of each day!

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  15. Laine, Thanks for making me bawl in my soup. Seriously, what a beautiful expression of what our AWESOME, AMAZING GOD has done in the heart and life of a wonderful little girl!

    Lydia, When you were about to have your last open heart surgery, God told me that I needed to befriend your momma, to pray for her, and with her. I didn't know then how much we would grow to LOVE you all & how close we would become. I can't believe it has been 6 years! My mom always told me, "Pretty is as pretty does." That is you! You are such a beautiful girl, because you have allowed God to make you pretty on the inside! I miss you soooooooo much and love you more! Happy HAPPY Birthday!
    Love, Auntie

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  16. Happy Birthday to Lydia! =) Praise the Lord for His healing hand upon her life--she is a miracle! How is her health today? (Btw--she and Cami share the same middle name!) ;)

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  17. Happy Birthday Lydia!! Thanks be to God for choosing her parents as only He could, perfectly. How could anyone doubt God when looking at Lydia?

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  18. Beautiful story.. thank you for sharing it with us. Happy Birthday Lydia! Shes got Old Soul eyes.. beautiful.. filled with Gods Spirit!

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  19. What an amazing story of God's faithfulness -- thank you so much for sharing! And happy birthday to your sweet girl.

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  20. Wow! Such a beautiful story of our Great Physician and His care for His children. Makes me so very grateful that my four children are {as far as we can humanly know, of course} all healthy. I need reminders like this from time to time to realize that something like health is not something to be taken for granted. Thank you for sharing this beautiful story. And, happy birthday to sweet Lydia.

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  21. Hi there! I found your blog through instagram and LOVE it. I'm a homeschooling mom in Georgia.
    Does your daughter have HLHS? We just adopted a son who has HLHS. Your half a heart comment made me wonder if that's what it was. Gabe is about to be 3. He had the first two surgeries before we adopted him so this is new territory for us. I live seeing kids thriving that have had heart problems. Can't wait to follow along with your family.

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