Monday, August 12, 2013

More Information, Only a Few Answers

Today was a big long appointment day. I hardly know where to start with all of the information flooding my brain.  While we received lots of information it all still falls somewhere into this broad spectrum, because so much is and will remain uncertain until he is born.

We first met with the pediatric surgeon, who will most likely be the one to operate on our baby boy.  He took a look at all of the sonogram pictures and just went to town filling our heads with lots and lots of information.  So much so, that I am not even sure how to get you up to speed on it all.

Worst case scenario is still the same.  That our boy would be still born due to distress of any type while he is still inside.  He also added that although we are seeing small intestine on the sonogram it needs to be working (somehow we hadn't thought of that!) and that hopefully he has enough small intestine to work with.  If for some reason that small intestine is not working, then they would just be keeping him comfortable at that point. A transplant on any part of the intestine is not a viable option right away and/or most likely ever.

He explained how complex the small intestine is and the function of the large intestine as well.  If the small intestine is in full working order you can totally live without a large intestine!  Great news! 

He also explained several options if the small intestine falls somewhere in the middle between not working and fully functioning.  These options include several surgeries over the course of the first year or two.

More praise! We found out that it will most likely not be emergency surgery. The surgeon said he  expects him to be stable when born. That most likely they will be able to give him a couple days (on iv for feeding) before he operates.  They will do x-rays and contrast dye before surgery to get a better idea of what his intestine look like and how they are functioning.

He did say that although there are several steps they go through, this surgery will still very much be a make it up as you go type procedure.  His case is so rare and will be so specific to his body that there is not necessarily a predetermined route to take.

He also said for us to expect at least a month stay in the NICU.  While it is impossible to determine how long and any little change will make that longer (especially if he is delivered prematurely) that was his very best case scenario answer. 

We were very pleased with our visit and how thorough he was with us.  By the end of our appointment he had filled the whole table with drawings to help us better visualize each situation.  It was fun to see him jump into action when he walked into the next patients room where there was actually a child.  It seemed like he was really in his element with kiddos. 

So straight from that appointment we went to meet with a high risk maternal coordinator at the hospital. She took us on a tour of the hospital and they are not joking when they call it Medical City.  It is enormous. We went through labor and delivery and on to the NICU floor.  It was good to see and learn more about the policies and procedures.  Matt and I were both heartbroken to hear that the boys will not be able to visit their brother at all.  The coordinator also explained a few services that are available to us, one of which is a Child Life Counselor.  This counselor can meet with Matt and I and also with the boys to help give us language and tools to help the boys understand what is going on. This was a huge praise for us because our hearts are so heavy thinking about what this is going to mean for them.

So today we are thankful for modern medicine.  We are thankful that all of the dozens of doctors, nurses, specialists and office staff that we have met have been so kind and encouraging.   We are beyond thankful for the prayers, texts, emails, calls, meals, childcare and general outpouring of love on our family.  Sometimes this world can seem so awful and in these days which could easily be overwhelmed by darkness every where we look there is light. It shows up in so many unexpected place like letters from sweet little girls and even right there in a hospital window!

We are still praying that I would be able to carry him full term, that the fluid would not spread and that he will be born with a healthy large and small intestine.  We are praying for my care and for wisdom for the doctors who are guiding this journey. We are praying that no matter where on the spectrum our boy falls that we would rest completely on the strength of the Lord and that his life and our lives would bring Him glory.

The steadfast love of the Lord never ceases;
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
"The Lord is my portion,"
says my soul,
"therefore I will hope in him."
Lamentations 3:22-23  


  1. Hey Callie,

    I hope this isn't too personal, but by any chance do they have a name for what's going on with your little guy? The reason I ask is brother was born with Eagle-Barrett Syndrome and had MANY of the same kinds of newborn symptoms, tests and surgeries that you wrote about. He was basically born without stomach muscles and spent the first three months of his life in the NICU. I guess I just wanted to give you a little bit of hope and a light at the end of the, despite his rough start in life, my brother is happy and healthy with little to no side effects. I truly pray that this baby (and all your family) are able to overcome whatever obstacles pop up in the next year.


  2. What a day for you guys! You all are definitely in our prayers!!

  3. Praying for you, Matt, and the boys Callie! Thanks for keeping us updated on how to specifically pray for you!

  4. Praying right along side you! And I am willing to help in any way possible from childcare to meals to seriously whatever.

  5. Medical City is a miracle in and of itself! You are in the best of hands there, I just know it. Thank you for sharing so much with all of us, friend. I think of and pray for you all every day!

  6. Does he have a name yet? So we can use it when we pray for him? :)

    1. Not yet! We might be close though! I will definitely make it public :)

  7. Your mom has been sharing updates and information with me. I'm so glad she included your blog. You write so beautifully from the heart. Prayers are being said for all your family; I know your faith is strong and God will provide. I love all of you as family.