Trust in the Lord with all your heart,
and lean not on your own understanding.
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”):
Her sweet hand and foot.
The spine above appears unchanged in its 90 degree curvature, pulling the legs out to the side and mostly in front of her face.
You can see by the position of her legs, her spine is sharply angled.
“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