Monday, October 30, 2006

The miracle of life...

Thank you so much for visiting our site! Jordan & I are now 22 weeks pregnant w/our first child - a son! We're so very excited that God would bless us with a child! We did not plan to become parents so soon, but have once again learned that God's timing is absolutely perfect! We couldn't imagine any other route at this point...How exciting! While this is a wonderful time, there is much need for prayer.

We've known for about a month that he has a heart defect, but could not determine at the first two ultrasounds what it was due to the baby's position, contractions, etc. Thankfully, UNC Chapel Hill Hospital is nearby & we were able to get answers two weeks ago. Our little boy has an irreversible heart condition called HLHS (Hypoplastic Left Heart Syndrome). This syndrome is comprised of several heart defects, most notably a severely underdeveloped left ventricle & aorta. Right now, he's fine while in the womb since the whole heart is working together to distribute healthy blood to the entire body & the placenta is providing the oxygen needed to his blood. However, distribution of oxygenated blood to the body is entirely dependent on the left ventricle & aorta after birth, & thus presents a huge problem as his heart will not be able to do this on its own with this condition. Survival after birth is dependent on one or both of two options. This first is a process of 3 open heart surgeries, the first occurring during the first week of his life & the last at two years to fully reconstruct the structure & flow of the heart. The other option is a full heart transplant in order to survive once he's born. Both options are equally viable & risky. Simply put, he cannot survive w/the heart he currently has. There is no specific known cause for this condition, simply something that can develop in some babies. Thankfully we were able to find out about this now, so that plans & surgeries can be put into place once he's here. Otherwise, he would not last one week after birth if left untreated. The form of HLHS which he has is an extreme case, with other defects such as a missing mitral valve & endocardial fibroelastosis, which means the left ventricle is completely made up of scar tissue at this point, preventing it from both developing & functioning. We learned last week that these added complication prevents him from being a candidate for an in utero procedure at Boston Children's Hospital, but at least we know we've tried all we can in that arena. To learn more on this condition, visit www.mayoclinic.com & search "HLHS".

Hard news to take, but this is God's baby & His ways are higher than ours! We're praying for healing & that all will be amazed at what God does, whether that is the supernatural healing of his heart or the success of these surgeries. No matter what, we know God is in control & He will provide everything we need to walk through this.

So please keep our family in your prayers. It is difficult at times, finding the balance between healthy grieving over the situation & making the plans that now seem necessary once he's here, and maintaining faith & trust in God...because there is NOTHING He can't do! What a roller coaster :) We appreciate your prayers for wisdom during this time as we go through more tests to learn more of what's going on with the baby & to make plans for once he's here in light of his medical situation. God has provided some of the very best medical facilities & options available just a few cities away from us - what a blessing! He is in control & our eyes are on Him.

That's the scoop on our little boy. Keep checking this site for updates on his status as we learn more about his condition & make plans for the necessary surgeries once he's here. God is in control!!

Diagram of a Normal Heart


Diagram of a Heart with HLHS

10 comments:

nora said...

Patience and Jordan, your bravery amongst these trials is amazing. My family went through similar trials, involving my younger sister. But medicine has come so far since that time, and you have God on your side.
your in my prayers.
nora

Anonymous said...

I AM BELIEVING THAT OUR MIRACLE MAKING CREATOR WILL CREATE A NEW HEART INTO YOUR LITTLE MIRACLE AND HE WILL BE A LIVING AND BREATHING TESTIMONY TO THE GLORY OF GOD!!! HALLELUJAH I LOVE YOU! Cindy

Mike and Judy H. said...

Jordan and Patience: You are mature beyond your years. Your faith "shines" through the words on your page. As you both continue to trust in God's plan, He promises to prepare your hearts and minds for the emotional decisions you will be making in the days ahead. We send our love. We promise to pray for you both, your son and your sweet family. God's Love is amazingly, sufficiently perfect; full of hope, purpose, and peace.
Love, Mike and Judy H.
Proverbs 3: 5-6.

Bryant said...

Patience & Jordan, Your courage and faith is such a blessing to me. You are helping me to grow stronger by your strength and trusing in the Lord during these times. Thanks you so much for being great examples for us all to learn from. I will pray for you continually.

Love & Prayers, Bryant

Paty said...

Dear Patience and Jordan,

I am Paty Moody. I 'm so happy to see your strong faith.
The Lord is good and His mercy endures forever.

The Lord will take care of everything, no doubt about it.
All of you will be in my prayers.
This Psalm helped me when my mom went thru cancer. She is well now!!
PRAISE HIS HOLY NAME!
When people asked me, how are you?. I said, Hoping and waiting for the mercy of the Lord!
God bless you.

Paty

Psalm 33
18Behold, the eye of the LORD is upon them that fear him, upon them that hope in his mercy;

19To deliver their soul from death, and to keep them alive in famine.

20Our soul waiteth for the LORD: he is our help and our shield.

21For our heart shall rejoice in him, because we have trusted in his holy name.

22Let thy mercy, O LORD, be upon us, according as we hope in thee.

Stephanie said...

I will be praying for baby leino :]. I love you guys, and Im know that god will make sure things go the right way.

love,
stephanie.

Rachel Pick said...

I will be praying for you guys and Baby Leino. The theme of what God has been teaching me is all about His POWER.

Eph. 6:10- Be strong in the Lord and in the POWER of His might.

2 Cor. 12:9- And He has said to me, "My grace is sufficient for you, for POWER is perfected in weakness " Most gladly, therefore, I will rather boast about my weaknesses, so that the POWER of Christ may dwell in me.

The faith that you guys have is evident and encouraging in this post! Take care!

Anonymous said...

We are praying for all of you .GODS will be done.

Anonymous said...

I heard about your baby on a website where a friend of yours asked for prayers for him. One of my Godchildren was born 5 year ago with HLHS. She has had the first two corrective surgeries and is waiting for the third. Like your little boy, she has a unique anatomy, and it is astounding the doctors.

Why am I telling you about her? Hope. I remember going to the hospital 5 years ago and hearing grave prognosises about what her life would probably be like if she survived. They were wrong! My Goddaughter is smart and funny. She plays alongside her older brothers with few physical limitations. And she has the fighting spirit of a tiger! She never gives up in any test of wills with her parents. That spirit is what God gave her to get her through her troubles.

So please keep your hope alive and look forward to many years of watching your little one grow and turn into a charming little guy with the spirit of a tiger!

Pam in Wisconsin

Roger said...
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