This is a picture from our ultrasound of little Lily Ruth Kongaika. She is a girl. Eryn was the only one who guessed right (okay and you Kelly =) ). We all thought she would be a boy. We had our ultrasound almost two weeks ago and at the ultrasound we found out that our sweet baby has serious complications. She has spina bifida. This is a neural tube defect that happens in about one in one thousand babies in the U.S. There are varying degrees and hers appears pretty severe. The opening in her spine is large. Because of the spina bifida she is also suffering from hydrocephalus or water on the brain. The brain is being pulled down in the back and fluid is pooling there. Another complication from the open spine is that she has clubbed feet. This is due to the lack of nerve activity going to her legs and feet. We were told in the ultrasound that this is considered a high-risk pregnancy and will have to be closely monitored. I will most likely have to have a c-section close to my due-date (Dec. 23rd) and the baby will have to go directly into surgery.We have felt very humbled by all of the news of our baby girl. We want so badly for her to have a chance at life with the fullest possible mental and physical capacities. And at this time we feel completely and deeply dependent on the Lord.
I had felt a certain urgency and spiritual prompting to have this child and before deciding to have her we fasted and prayed together to be sure it was right. After receiving an answer we felt sure it was what the Lord wanted for our family at this time. Considering all of this now we feel sure that the Lord is in charge and that He is going to guide our footsteps through this difficult time.
We feel so grateful to have so many friends and family members supporting us through prayer and fasting. I hope that we can continue to count on all of you for your support through your faith and prayers. We will try to give updates as time goes on.



15 comments:
We have found out that God's detours bring a lot of growth and blessings that we wouldn't have had if we could have followed our own chosen path, even if it was a good path. It's hard not to have control over what happens to your children. Just remember, God loves them more than you do and he knows their needs and in the end they won't lack for anything He has instore for them. We pray for you always and know that God is mindful of you all and your concerns. He will help you shoulder this burden and carry it has far as you need to . Much love, Auntie Laura Lee
Love you guys and thanks for keeping the update on the blog :). Her ultrasound picture is precious. I LOVE the name. Too cute!!! Let us know if you guys need anything.
Love the Kinikini's
What an amazing journey of faith and love you are on. Thank you for being open in sharing this with all of us. We can not wait to meet Lily, she has so much to teach all of us. We love your family and love being able to keep up to date this way.
Love you all,
The Wingets
Our prayers and thoughts are with you and your family. Thank you for your great example of faith. I know Lily will have a great life with the Kongaikas!
Dear, sweet family, I am so humbled to hear your story. I am amazed by your strength and have no doubt that Heavenly Father is with you and will give you all you need to get through this trial. Thank you for sharing your experience and we will have you in our prayers! Love, cousin Ashley :)
There is no doubt in my mind that you (and your family's) limitless capacity to love will carry you all to high places, no matter what the situation. Lily will be so happy to join your family. She will be gorgeous and resilient. I can't wait to meet her! You're all in my thoughts and prayers. If ever you need anything, lmk. Keep us updated! much love to u.
Kongaikas,
We were sad to hear the news of your baby girl, but encouraged by your hope & faith in this situation. Look at all that she has already taught us! She will certainly be a strong & special spirit. We have fasted & prayed in your behalf, and will continue to do so as much as you need it. Please keep us posted. We love you guys & hope for the best.
~Spencer & Martha Bigler
Kongaikas,
We were sad to hear the news of your baby girl, but encouraged by your hope & faith in this situation. Look at all that she has already taught us! She will certainly be a strong & special spirit. We have fasted & prayed in your behalf, and will continue to do so as much as you need it. Please keep us posted. We love you guys & hope for the best.
~Spencer & Martha Bigler
I was just thinking I hadn't visited your blog in awhile and that I should check in and see what you're up to. I started a few posts back and saw the wonderful family pictures of all your siblings and thought of so many great times with the Smith clan and was smiling from ear to ear when I got to this post. I am so impressed by your faith and will add our prayers to yours that this baby girl will fulfill all the good that Heavenly Father has in store for her and for your family as a result of having the faith to bring her to the Earth. Bless you all as you prepare for this event and know that somewhere in the world (Venezuela, to be exact) there is a family praying for yours. All the best, Linsey Crisler
I just ran a blogsearch on spina bifida and your blog is one that came up. I too was born with Spina Bifida (thirty-some-odd years ago)and am completely humbled by God's grace in getting me where I am today; two college degrees and loving life here in Montana (where I am originally from Southern California)!
God is good.
In His Strength,
Tryna
I will keep Lily in my prayers...and you guys too. If anyone can handle this with love, patience and strength, it will be you two!!!! Love, Mibi
I hope things are going good or better guys. We think about pray about you guys all the time. Thank you for taking time out to hang out with us this summer it really meant alot to have you guys around for awhile. Makes us feel at home.
I love the name Lily Ruth!! Very cute.
Ofa lahi atu.
You guys are so special to us. We already admire the amazing family you are, and your faith with this experience gives us even more to look up to. We will be praying for you, and we'd love to help out in anyway possible.
Joel and Meilani - I wish I was there to give you both a HUGE HUG. Our hearts and prayers are with you! Love you guys - Brenda
Meilani! This is Steph Glazier (well, no longer Glazier...) I read your story about your little girl. I have a thousand thoughts and a thousand prayers for you. We need to get in touch! Please tell your Dad I say hello, and know that some pretty powerful prayers are being said on your behalf by many who love you :)
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