Bad News/Good News back to STL we go...

From Jonny: 

Today we returned to the hospital for our post-surgery check up. It was another crazy day of testing at Cincinnati Children’s Hospital.  It was a very mixed bag, in the sense that a few things were better, a few things were worse, and some items continue to be ‘stable’.  Here’s where we stand in our current situation. 

Both babies are alive and have heartbeats.  Though the donor twin (Baby A-smaller baby) continues to have mild to moderate problems, he is doing well all things considered.  To explain: In twin-to-twin transfusion syndrome (TTTS), there are 5 stages.  Stage II is that the bladder of the donor twin can no longer be visualized on ultrasound (US).  When we had surgery, our staging of TTTS was considered stage IV because the recipient twin (baby B-larger baby) was experiencing significant hydrops (fluid throughout the body including stomach, lungs, and skin) which is the primary sign of heart failure.  Throughout this entire experience, Baby A has continued to have a bladder that can be visualized on US, which means that he is doing ‘abnormally well’ (though still having problems), considering how severely sick his brother is.

The recipient twin (Baby B) continues to have severe hydrops (fluid throughout the body) and severely impaired cardiovascular function.  The good news is that there are no structural abnormalities in the heart, but the function of his heart continues to be very poor.  We had an echocardiogram the day after surgery as well as today, and the pediatric cardiologists told us that the function of the heart was primarily the same or perhaps a bit worse than the day after surgery.  Our surgeon, Dr. Lim, did state that it typically takes 4-8 weeks for hydrops to resolve and cardiac function to improve, and he is still hopeful that this will happen.  However, one conversation that we had with him today that was very hard to hear, was that he re-iterated that one of the purposes of the surgery was to protect the donor twin if the heart function of the recipient twin worsened and he did not survive.

Katrina is still at risk for pre-term labor, and although her cervix is still quite shortened, it has not gotten any worse, and may be a slightly better than it was 5 days ago.  Dr. Lim did note, that since we did not see any significant progress with the length of the cervix in the first few days, the changes hereafter would most likely be small.  Therefore, Katrina will be on strict bedrest and high dose medication throughout the rest of her pregnancy.

They boys are currently weighing 13 oz and 15 oz, with only a 12% discordance in weight, which is an encouraging sign.  The amount of fluid around each boy continues to be stable (prior to the surgery, Baby B had a severe amount of extra fluid surround him in his section of the uterus, that’s why they had to withdraw 2.5 lbs of fluid during the surgery.  This is external fluid is not to be confused with the internal hydrops or swelling in Baby B, which cannot be directly affected or withdrawn).

The surgeon has released us to travel back to St. Louis.  Katrina will continue to be on bed-rest.  We will have weekly ultrasounds.  We will have echocardiograms to measure each boy’s heart function every 2 weeks.  Katrina also may have to go to 2-3 additional visits per week for monitoring and appointments

Please continue to pray for Katrina and the boys.  Pray that Baby B’s heart function improves and the fluid in his body reduces.  Pray that Katrina does not experience pre-term labor, as the boys are only 20 weeks.  And pray for peace and strength for Katrina and myself.

We also set up a link on reputable website that people could donate to if able, to help us out with our growing medical bills.  Here is the link...

http://www.gofundme.com/1nmhq8

Thank you so much for your help and prayers so far on this long and difficult journey.

What specifically to pray for:  

1. Improved health of both babies but baby B in particular. He is referred to by the doctors, nurses, etc. as "a very sick baby" 

2. A safe trip back to St. Louis with no hospital stops! 

3. NO contractions-NO preterm labor! 

4. Peace and strength for both of Katrina & Jonny