Resting in God alone

Trust in the Lord with all your heart,
and lean not on your own understanding.
Proverbs 3:5

If I had to pick a verse of scripture as a “life verse” this would be it. I was, am and always will be a worrier. God has taught me life lessons on patience and trust to focus on this verse, trust Him and lean on His ways not my own. It doesn’t say “trust in the Lord when it’s convenient or when I get my way”; it says “Trust in the Lord with ALL your heart”. This lesson is ever present in life.

Usually I am the person who will think of every possible way something could go wrong and what I can do to solve the problem should it arise. I think and stress about the “what ifs”. Thank goodness I married someone less anxiety ridden than me because when I stress, Josh always pulls out this verse:

Matthew 6:25-27“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?

I rest in the fact that God is powerful, consistent and much more intelligent than all of us. He will take care of me and the people I love in life. This may mean that He will bring them to Himself earlier than I would like (in the case of my mom and Cora), but I have to trust that is for His glory alone not my own. We were made in His image and we were adopted into His family. He loves us more than we could ever fathom. This love extends even to those unborn children; they are no less a part of His family and no less valuable.

This ultrasound did not give us drastically different information for our current understanding of Cora’s prognosis. The prognosis remains grim. HOWEVER, she made it to 24 weeks, which is further than most people thought. We have little information about the future, due to the lack of firm diagnosis and research on her findings. In my professional opinion and through research and doctor’s suggestions, I am leaning toward a variant of limb-body-wall complex. There are findings that she has that are not associated with this syndrome  and some findings of limb-body-wall that are not found on her ultrasound. We may never know for sure what she has, but at this point the findings are more indicative of her future prognosis.

The new information include that the heart is almost completely outside of the chest wall due to a disruption in the sternum and there is growth restriction (she is measuring almost 3 weeks behind). Everything from the prior ultrasound appear to be similar. If you are new to the blog, “Be Still and Know” is the anatomy scan blog post link with an ultrasound report; you can also click this link: About Us. There is still adequate amniotic fluid around her, she moves as much as she can even with the shorter umbilical cord and her limbs, brain and face all appear normal (all good news). The growth restriction may compound the already existing difficulties she will face at birth. In addition to most of her abdominal contents outside of the body and the heart partially outside due to massive defects in her chest and abdomen, her spine is severely twisted and she is now small for her age. This will most likely continue throughout the pregnancy and she will only weigh a few pounds at birth. Severely growth restricted babies are already at a disadvantage due to malnutrition inside the womb and pulmonary hypoplasia (underdeveloped lungs).

Recently, I read some articles on limb-body-wall and discovered most babies don’t make it far enough for birth due to IUFD (in-utero fetal demise) or termination of the pregnancy earlier in the first trimester. The only cases I have seen at work were terminations. That being said, the statistics for survival are incredibly low; I’m not sure there has ever been a baby to survive with her findings (at least not from my research). When I say Cora faces low survival rates, she faces almost zero survival rates. That being said, Josh and I have discussed the plan to try what we can to intervene for Cora. There is another ultrasound to check growth in 3 weeks and then a surgical/palliative care consult when I will be around 30 weeks. We are meeting with pediatric surgeons at that time to discuss our plan with them. Our plan is to let them use their judgement when Cora is born for resuscitation and surgery to prolong a sustainable life for her and not to prolong inevitable suffering. Otherwise, the palliative care team will take over and she will be kept comfortable when she passes. We are eternally grateful that decision will not be left up to Josh and I, but to the pediatric surgeons and Cora herself.

At this point I will have a planned C section around 36 weeks sometime mid-August, unless something changes with my health or Cora’s. So far, Cora is amazing. She is moving her arms and legs, waving, yawning and flipping around. Her story is inspiring many and there are probably thousands of people praying for her. It is truly amazing how God can touch people’s hearts even through the unborn.

Please pray for all three of us. Pray for Josh and I specifically not to play the “what if” game with the future. Pray that we face the future with courage only God can give as we may have to prepare ourselves for our firstborn’s birth and the possibility of her death. God has the future laid out and it will be glorious, with or without our pain. Pray that Cora’s body will be healed, but if that is not the plan, pray God will use her story to bring someone closer to Him or His kingdom.

I will now share the cuteness that is Cora (again I have focused mainly on her cute face and limbs and less on her “abnormalities”):

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Her sweet hand and foot.

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The spine above appears unchanged in its 90 degree curvature, pulling the legs out to the side and mostly in front of her face.

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You can see by the position of her legs, her spine is sharply angled.

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Big yawn!!

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In Him,

The Shraders

“God loves us, so He makes us the gift of suffering. Through suffering, we release our hold on the toys of this world, and know our true good lies in another world. We’re like blocks of stone, out of which the sculptor carves the forms of men. The blows of his chisel, which hurt us so much, are what make us perfect. The suffering in this world is not the failure of God’s love for us; it is that love in action. For believe me, this world that seems to us so substantial is no more than the shadowlands. Real life has not begun yet.” -CS Lewis

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9 thoughts on “Resting in God alone

  1. How beautiful is little Cora! I love the yawn and the last picture is absolutely precious. You are an inspiration to me! I wish my faith was as strong as yours when facing such uncertainty.

  2. I’m constantly amazed at her growth and progress when all seemed so dire. The Lord is certainly working in this situation, others’ lives, your hearts, her little precious life.

  3. You and Josh are amazing, as is God’s love for the 3 of you! She is a truly precious gift and you two are caring for her with the love of God. What more could a little girl ask for? You both are exceptional parents! Thanks for including us in your journey. You all are in my thoughts and prayers. God has great plans for you. The bible says so!

  4. Thank you for sharing and allowing us to pray for your family…I can just feel the LOVE that Cora feels in you…and you in the Lord.!

  5. I am praying specifically every day for a miracle. Praying that God with heal Cora while in the womb. In him All things are possible. God has a plan for Cora’s life. He loves her more than we can imagine.

  6. Your faith is so encouraging. Gods grace and peace never cease to amaze me. Thank you for sharing your journey with others. I will be praying for both of you and your precious Cora! I found out about your blog from Krystle Williams, she is my niece. Please add my email to your list. I will continue to pray and I want to keep up with what God is doing and going to do. :)))

  7. I love your pictures of your beautiful little girl, so sweet! I am the mom of “2” Angels of Galloway-Mowat. It is so rare that there is only 40 cases since 1968 and I have 2. I never knew that my son had this, I was just told that he had Micro-Liss and how blessed that God gave me such a wonderful gift a baby boy!! His head measured less that 3 standard deviation so his head was very small. When he was born he had failure to thrive and we took him to UNC-Chapel Hill only to learn he was doing to pass away. It was as if they where talking to someone else. I thought I would never be able to breath again. He was put on hospice at 4 months old and so began his very hard journey of a “special needs baby”. He was such a trooper and he made it to 13 months 3 days and then he gained his wings in my arms at home. The doctors would give us worse case all the time and I looked at them and said “God almighty gave me this baby and God almighty will take him home”!! They never gave me gloom and doom again. Then after we laid him to rest I found out I was pregnant again with our beautiful daughter Katie Grace. There is no testing for Galloway-mowat so we had to do ultrasounds and MRI to see if she had it as well. They told me she was border line and they could not tell. I Knew God had sent her for a reason and I was told I could end my pregnancy and I said no she was my baby girl. I had her via c- section on July 5th 2007 we fell in love with her and she did have a smaller head after she was born, I think I knew in my heart she had it as well and on Oct 28 2007 she gained her wings in my arms at Duke Hospital she was 3 months 3 weeks old. I learned that in every pregnancy I have I have a 1 and 4 chance of passing this bad gene onto any children we had. I knew If I put it in God’s hands he would lead us and guide us. At the age of 43 I had my Rainbow baby on Aug 5th, 2011 he is Healthy and happy at 21 months. I will be forever blessed that God gave me those sweet “special” babies and that I got to be there mom. I am praying for your family and that your sweet baby Cora will do well. I live in Wilson by the way. If you ever need me I would love to be there for you.” With God all things are possible” I live by this everyday, He has shown me grace and peace. God bless you!!
    Dawn R.Smith and Edward married 28 years
    Breanna age 14
    Brendan Aug 22, 2005- Sept 26, 2006 ^j^
    Katie Grace July 5th 2007- Oct 28, 2007 ^j^
    Brayden Aug 5th 2011

  8. My heart is broken for you. I want so badly to say something profound. I am moved by your maturity in Christ and in your faith. I am humbled by your story. Please know there is one more friend out here praying for you all.

  9. Wow. Your strong faith is so inspiring! I thank you for sharing your personal life and Cora’s story. Your testamony and the scriptures you shared are just beautiful and your strong faith is extremely touching. Especially because
    I can relate to you in the sence that I have always been the person that constantly worries and in every situation I will think of all the senerios of how it can go wrong and I always think the worse. Recently i have gotten back in my faith and have been working on strengthening my relationship with God and now I am realizing that worry and anxiety and fear are my worse enemy and planted by the enemy! im realizing i have to rely on god and knowing he is on my side is the very reason that I have no reason in the world to worry. You have truely blessed me by sharing your story and how positive and truly faithful you are. God is obviously working through you and Cora to inspire and bring others closer to him. That is truely amazing. My heart goes out to you, Josh and Cora. God bless.

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