Day 3 - Friday, January 10, 2014

Today began very early for all of us with a lot on our minds to what the day would bring.  We left for TCH at 6:45am and our first appointment would be another sonogram at 8am.  After leaving TCH on Wednesday we both had been praying for clarity and strength that whatever the outcome and results, God's will would be clear and not put us in the middle of this - either the results would be favorable (i.e. good urine regeneration and improved urine results) or the opposite.  Neither one of us felt strong enough to make a decision when it comes to quality of life for our son - we just needed a clear path from God!  

After arriving to TCH we finally get back for the sonogram and they start the scan.  Right before they started the genetic counselor we had dealt with on Wednesday came to tell us that his FISH results were back and they were normal.  This was a HUGE relief to us because we knew pending what we were about to find to out this would not be a factor for us in continuing an intervention if necessary.  They measured his bladder to see if he produced enough urine to possibly do another bladder tap, his bladder measured at 5.1cm (it was 5.8cm Wednesday).  They decided that this was sufficient enough and we would go ahead and tap his bladder again to check his urine.  One of the other LUTO specialist doctors performed the procedure this time and they were able to pull 35cc of urine from him.  This was a bit concerning to us because they pulled 60cc on Wednesday, but they assured us this was normal.  

After the procedure we were taken to a conference room to meet with a pediatric urologist.  The pediatric urologist discussed with us about how a surgery would be performed to help clear the obstruction after the baby came to term and possible different ways this would be taken care of.  He would only perform this surgery once the baby was stable and there were ways that we would be dealing with this until the surgery happened.  Again, this was information that would be necessary down the road and we were still collecting information about the condition our little boy.  While the urologist's perspective was important, our minds continued to go back to our son's kidneys.  This organ function is imperative to the growth / term of his lungs and development.

After lunch we head back to wait to meet with the staff.  It is so difficult to concentrate on anything at this point but this article kept coming across my Facebook page and so while we waited I read it.  It really struck me and I think it was a reminder from God to me that He never left us and He is there through all of this.  Here is the article: http://lemmonythings.com/2014/01/05/god-will-give-you-more-than-you-can-handle-i-guarantee-it/

Finally we met back up with the staff to discuss the urine analysis from the bladder tap that was performed earlier that morning.  In the conference room with us was three doctors (the director of OB for the hospital, the main specialist we had been dealing with mostly all week, and the another specialist), two residents, and our clinical coordinator.  Up to this point we had both been anxiously awaiting the news we were about to receive, not truly prepared for it all.  As they all come in and sit I get a sinking feeling that the news we were about to get was not what we wanted to hear.  Our main doctor started off by stating that they urine analysis came back but the results unfortunately were similar to Wednesday therefore no intervention could be done.  Our hearts were shattered.  We were both in complete shock with the information we just received and couldn't believe what we were being told.  Both the urine quality and quantity were inadequate to develop the lungs and sustain life outside of me.  The pain is indescribable - hearing this and feeling him move in me at the same time.  It's tough understanding and processing God's will in all of this.

They proceeded to tell us they were so sorry and that there were options for us to take from here (obviously we are hearing little past the news they just communicated).  The three options that we were given were D&E (dilation and evacuation), preterm labor, or carry till he passes or to term.  These were all options that we had already discussed prior to knowing these results, but we could not process this.  

Please note, it's extremely difficult thanking the staff and doctors of TCH with this news just communicated.  However, they were nothing less than exceptional  and sitting there saying "Thank you" with tears flowing down from both of us is very difficult.  They truly were outstanding in all aspects, including the emotional comfort through the roller coaster of hell. 

More to come on a Mother's and Father's perspective of this journey...