Yesterday was one of the longest days of our life. We had our appointments down at UCSF starting at 8am and leaving our last one after 4pm. We met with a number of different doctors, specialists, and surgeons. We went down there hoping they would send us away with a confusion of why we were even referred there in the first place. But, it turns out our situation is much more serious than we thought.
It was confirmed through an ultrasound and an echocardiogram that the Twin to Twin Transfusion Syndrome had progressed to a Stage 3, which probably doesn't hold a lot of meaning for most of you. But, basically it's the most serious the syndrome can get while still having good chances of the babies surviving it with laser surgery. Had we waited any longer, it probably would have been too late to do anything.
To give a few more specifics, our donor baby (the one with less fluid) is starting to show signs of stress in her kidneys, and her bladder isn't visible at all (meaning she isn't getting the nourishment she needs). Our recipient baby (the one with more fluid) is having to work over-time to process all the additional fluid, causing additional stress on her heart. She is the one that the doctors are more concerned about right now.
Fortunately there is a laser surgery that is now available to try to correct the problem in the babies' placenta. The surgery has only been in existence for about 20 years and is only performed at a handful of hospitals, UCSF being one of them. The surgery is pretty straight-forward, though with obvious risks involved, just like any surgery. They will go into my abdomen with a small laser instrument about the size of a drinking straw and with the help of an ultrasound they will identify the blood vessels in the shared placenta that are causing the discordance in blood flow between the two babies. Using the laser, they will cut off those blood vessels, leaving the babies with vessels that flow equally between them.
So, we will drive back down to UCSF tonight. They will check me in around 8pm and get me all prepped so that they can perform the surgery first thing Thursday morning. My actual time slot isn't until 1pm, but they are hoping to get to me much earlier than that. The surgery itself will be performed by Dr. Lee and should last an hour or so, after which they will monitor me and the babies really closely in the hospital. Friday morning they will do another ultrasound to see how things are going. Depending on what they learn from that, I'll either be discharged Friday afternoon or Saturday sometime.
While we have our concerns about going through with the surgery, we feel like the risks are much less scary than just sitting back and waiting to see what happens. Plus, the fact that our babies both continue to grow at the same rate, even with the present problem, is a really good sign. My placenta is also in a posterior position, which makes the surgery a little easier to perform. So, yes, we have our fears... BUT, we are also still very hopeful.
And, we are so grateful. We have been overwhelmed with so much love and support. We have felt strength in the midst of this storm that is not coming from our own reserve. We are being blessed with the strength and the courage that we lack, and know that comes as a result of the Savior's atonement. We are grateful to have each other, to have the perspective of the gospel, to have the most incredible family and friends who have stayed by our sides through all that we've faced.
Oh, and for the last few weeks we have been doing lots of talking about names for our little girls. We had initially planned on keeping that information to ourselves until they were born, but have decided now is a good time to share. Besides liking the names, we also found the meanings behind their names to be very fitting.
Baby A (our donor twin) is Elliana. It's a hebrew name, meaning "God has answered." She is one part of a double blessing in answer to years of pleading and prayer to start our family.
Baby B (our recipient twin) is Emmaline. I don't remember the origin, but it means "work." She is our little worker, doing double-time to keep them both alive.
We love our little girls so much! They are already teaching us so much about love, about courage, about the will to survive. They are our little fighters... and we are ready to fight with them. In the meantime, please know how deeply grateful we feel for the prayers being offered for us and our little girls.