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.

Info about my hosptial stay

http://www.chop.edu/flash/the-center-for-fetal-diagnosis-and-treatment-virtual-tour.html

http://www.chop.edu/visitors/visit-contact-a-patient/visit-contact-a-patient.html

24 week update

Today is 24 weeks!  Some of the maternity leave activities include signing the boys up for daycare!  I found a wonderful small school right in East Windsor that seems just perfect.  I have also found a yahoo group called "one lung wonders" and have read some encouraging stories.  One woman has a ten month old that has exactly what little B has.  The heart occupies the entire left side of the chest and only has a right lung.  So far the little girl has been doing well.  She had a surgery at birth to relieve some pressure that the aorta was pressing on her trachea.  She has some minor vertbrae issues and some gastric issues but is crawling around and most of the time mom can't  believe she isn't 100%.  Another encouraging story I read was an 18 year old girl who is capt of her high school cheering squad.  Now that takes some lung power!

Friday was our "transfer of care" visit.  First we had our biweekly ultrasound.  The little guys are growing!  Baby A was 15 oz two weeks ago and was up to one pound 8 oz.  Baby B was 13 oz and was up to one pound 4 oz.  The babies are at a 25% weight difference but I was told it is more important that they are both growing well.  The cords are more tangled but the blood flow is still there.  So they are as good as can be expected.  They are kicking me like crazy.  I feel A more than B but they said that may be due to my anatomy. 

Next we met with the midwife to see where I would be staying when I am admitted in about 4 weeks.  There are two rooms in which moms can stay if they need to be monitored before the babies are born.  There is one room if mom is brought in when baby is born.  One operating room and one room where they bring the little guys for assesment after birth.  The actual NICU is downstairs from the "maternity" area. It was empty and sooooo quiet when we were there.  Labor and delivery is not the norm in this hospital.  The room that I will be staying in is nice.  It is a private room with fold out couch and private bath.  I guess the good news is that I am allowed visitored 24-7.  The bad news is that I am so far away from everyone.  Once the babies are born, Will and I are allowed to see them anytime we want.  The babies may only have 2 orther visitors at time until 8pm.

We will be returning to CHOP Friday September 24.  They say we will see the NICU and meet with some other staff besides our usual ultrasound. 

Around the house, we have cleaned out the babies' room.  The car seats, stroller and twin pack and play have come in.  We have ordered the furniture for the room.  Only one crib for now.  They probably can share for awile.  So we are trying to firm up what we can around the house before I go to the hospital.  Trying to see people before I go in.  Life is going to change in about 10 weeks!!!!  The most memorable Thanksgiving ever :)