25 1/2 week update

Today was not an easy day at CHOP.  I'll start with the good news.  Both kids are growing.  In fact B is catching up to A and they are both head down.  A weighs 1 pound 14 oz (up 6 oz) and B is 1 pound 12 oz (up 8 oz).   In general blood flow is still OK.  The cords get more tangled by the week.  Now the problem- every once in awhile one kid pulls on the cord and the blood flow stops and reverses.  It happens intermittently and flow is restored.  I get scared because it is not like it is going to get better in the coming weeks.   They would like to see me next week to check on them again.

We met with a NICU doctor to explain what to expect at different levels of prematurity.  Based upon different expected outcomes with have decided with stick with the plan to not even think about delivery before 28 weeks.  At that point the baby with normal anatomy has an excellent chance of survival.  The baby with one lung does not have a chance of survival before that point.   Of course the ultimate goal would be to have them be delivered at 34-35 weeks as the two do not show signs of distress.  Even if we make it to that point, the  baby with the pulmonary defect with most likely have to remain in the hospital for quite awhile.  One of the possibilities is the baby may be sent home with a tracheotomy, breathing tube placed in the neck directly into the trachea.  Many of these babies have this placed for up to two years of their life.  If this is the case we may have to arrange for around the clock monitoring for the babies.  In other words someone must have eyes on the baby at all time not just sleep in the same room.  At this point it is all speculation.  We cannot be sure of more likely outcome until they are born.  I'm not scared of the risk of scoliosis, asthma, reflux or even the tracheotomy.  I worry about having lack of oxygen leading to brain injury.  After working at Kuser for even a short time- thinking my child could live a life of some of those I see is heartbreaking.

We toured the NICU and some other parts of the hospital. We saw another couple that had one twin in the NICU and the healthier twin in the stroller.   Looks like most of my day is free to do whatever I want.  They really will only be monitoring me once a day.  There is laundry facility which is nice.  I'm sure I will watch every Disney movie in the library.  Hopefully the time won't pass too slowly.  I know not many can visit, but calls and emails will brighten my day.