We had a follow-up echocardiogram yesterday at Brenners. It went as well as can be expected.
The doctor saw a couple of tiny holes between the chambers of the heart. Typically in a Trisomy 18 baby they expect to see a very large hole. He did not seem to concerned with these tiny holes and said that holes that size typically don't pose a problem for babies until they are a little older.
If Rebecca did not have Trisomy 18, the typical path to repairing these holes would be to do surgery when she was a couple of months old. However, because she has Trisomy 18 these holes will most likely not be addressed.
He said that last week's ultrasound findings of the small stomach and problems with the esophagus, would be the more pressing issues immediately after the delivery.
Dan and I really need to start thinking about what level of care we want for her after delivery.
Are we going to press for surgery to repair the esophagus? Are we going to have feeding tubes put directly into her stomach? Are we going to press for another echo of the heart to see if there are any other problems? Are we going to just request that she be kept comfortable and enjoy any amount of time we get with her?
These are all things that have been weighing on my mind. I think we will be in a little better position to make some of these decision after another ultrasound on the 30th. And at that point, we can begin the process of consulting with surgeons to get their opinions and to further figure out our options. The more information we can get from these ultrasounds, the better prepared we will all be at her delivery.
However, all of this seems a little futile to me. Because her diagnosis is "lethal" (such a lovely term to be used when discussing your unborn child) the doctors are less willing to do any type of surgery because it would not extend her life. So even though they are presenting us with some possible options, I am not sure they would actually do any type of surgery (except inserting the feeding tube).
So where does this leave me?
Still loving my sweet little Rebecca. Still treasuring every single kick and punch (and man, does she like to kick and punch!). Still enjoying her sweet movements every time I get to see them on an ultrasound machine.
And still praying to God for healing for her.
I know healing on this earth might not be in His plan for her, but I continue to pray for a miracle.