Wednesday, August 21, 2013

poop talk

Today I went in for a fetal MRI.  For the first time since his original diagnosis, just over a month ago now, we got good news!

The MRI today showed that there was meconium in his rectum.  That means 2 things.
1. He has a rectum! This couldn't be seen on the ultrasound
2. The poop got there somehow! This means that his small bowel is attached to the rectum somehow.  It is not fully showing at this point, but the doctor today diagnosed it as a microcolon. It is not nearly what a colon (also called large intestine or large bowel) should be but it seems there is a connection there.

We are not sure exactly how good of news this is, but we are certain that it is good news.  After all that time and talking through so many possibilities with the surgeon, this one possibility did not come up.  Currently, we have no idea what this means for future surgeries or his over all diagnosis.

The doctor today also believes he has meconium peritonitis.  This is a tear or perforation in his bowel and what would be causing his ascites.  This is one sign of having cystic fibrosis so we will probably be testing for that in the near future.  He does not have any other indicators of cystic fibrosis at this time, so the doctor indicated that is more to rule it out.  Cystic fibrosis is a recessive genetic disorder, so Matt and I would both have to be carriers for him to have it.  They will test me first and if I am a carrier then Matt will be tested.

This also means that he most likely has meconium in the fluid that is in his abdomen.  The doctors were already aware of this possibility, so they will just continue to watch for stress it may cause on his organs.  This can also be harmful once he is out of his current sterile environment, so they will address it when he is born.

There were also several other things that were sort of a mystery about his case, which is what we have grown accustom to. Lot of comments like "usually when we see this ______ also happens, but he is not showing any signs of that".
The other great news is that his brain, lungs, and all other organs still look perfectly on track for his gestational age.

Next up: Another visit with the perinatal specialist and first appointment with our new ob next week.

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  

Tuesday, August 06, 2013

a plan

Friday we had our second appointment with the specialist and were able to ask tons of questions.  Several of the answers were we won't know exactly until he's born, a few more were now directed to the pediatric surgeon we have been referred to and a few of them we even got answers to.

We did find out that our boy is not showing any signs of a chromosomal abnormality at this point.  Our decision was to do the blood test and not a full amnio so we don't have a complete work up, but everything they were able to test for came back negative.  We were so thankful that the waiting period was over and to get that news!

They also did another sonogram, which they will do at every appointment from here on out.  After our next appointment it looks like we will meet with the specialist weekly. The sonogram showed exactly what we had seen previously, severe ascites and no signs of a large intestine.

The plan for now is to continue with the regular observation of him.  They are looking for any signs of distress, like the fluid growing or spreading to other areas (heart/lungs/brain) or any sign of chemical distress to his other organs that the fluid might cause. I will continue regular care with the ob also.  Glucose test is up next! We will be meeting soon with a maternal care coordinator at the hospital who handles high risk cases and the pediatric surgeon.  They should be able to answer a  few more questions for us.

This road ahead is long and very uncertain.  There are many things that we simply won't know until they do or don't happen.  Out goal is to get the information that we can and continuing to trust and have faith with all the unknowns.

We are praying against any signs of distress and that I would be able to carry him until he is full term.  We are praying for peace to continue to wash over our family. And always for a miracle!