Well, we went to Nashville today to see Dr. E, which I would like to name now as Dr. Collins. We are very thankful for Dr. Collins, he has been wonderful. We were one hour late, because, well because I am scatterbrained. I actually have had great success in blaming this on being pregnant. I’m still not sure how I will excuse my lack of organization after the pregnancy . . . at any rate, with the Dr.’s permission, he still saw us. This is good, this means our 1 hour drive to Nashville was still fruitful. I have to admit, this trip I wasn’t as nervous as I have been. I attribute that to the sweet smelling aroma all of you are lifting up on our behalf. Prayer works and I have all of you to thank for that.
We first went in to the ultrasound room. We missed Rose Ann this time, she doesn’t work on Wednesdays, but we did have a wonderful technician named Jennifer. She is quiet, but she was very sweet as she shared with us what she was seeing and doing. I often think ultrasound technicians must be very patient. I mean as parents we really think we know it all about our babies don’t we? Today I was quickly (but gently) put in my place when I referred to “sacs (dark spots)” as “holes”. Of course I meant sacs, anyone can see that. And Peter mistakenly called the umbilical cord a spinal cord – twice. But they were sweet even still. We just had a little laugh and moved on. The baby’s condition really hasn’t changed very much, but I can now say that “it” will from now on be referred to as “she”. That’s right – it’s a girl!
One very neat observation made today is that her feet do not appear to be club. In other words, they are not turned in as was thought before. That was pretty exciting to me. I believe this to be a miracle. And I think we should all praise Him for that 🙂
She still has a lot of swelling. Her sweet fingers, toes, legs, stomach, everything is so swollen. This time her upper lip and her nose were very swollen too. All of the swelling is due to the build up of fluids. These fluids the doctor referred to as edema. The swelling around the head and neck area is being referred to as a cystic hygroma. Dr. Collins came in to review the pictures and to have a look for himself. Jennifer thought she saw a problem at the base of the umbilical cord, but he confirmed everything looked fine there. He pointed out to us the amount of fluid around her heart. I did hear Dr. Collins tell Jennifer that he thought it was interesting that the heart wasn’t enlarged along with the other symptoms he was seeing. He didn’t discuss it with us further, so I’m assuming it doesn’t mean anything yet, it’s just something he took note of. This did prompt me to ask him if what he was seeing was compatible with life. He said he still believed that from what he saw sustainable life would be very challenging. We are preparing for that, but I guess I just won’t believe that until it happens, if it does. There are just so many unknowns.
A lot of the questions we had today were about where we should go from here. He feels that we should deliver in Nashville, which we were leaning towards anyways. He also feels we will try our best for a natural vaginal delivery so that I won’t have to go through a major surgery. He doesn’t think I’ll make it all the way to the due date, which is the day after Thanksgiving. (I don’t know why I love having these holiday babies so much!)
We asked if he and his team would work with our families and children being a part of the whole process. He was very sensitive to this and we talked at length about hospice care, which he thoroughly recommends during times like these.
He also brought up again deciding beforehand how far we are willing to go to sustain life. He said hospice could be a great help in walking through some of these decisions. Peter and I have always been pull the plug kind of people, when it comes to ourselves. I just don’t know. We obviously just want to make the best decision for our sweet baby girl. Only time will tell what that may involve. Dr. Collins explained that often times in these cases life is best enjoyed to the fullest extent possible, however brief it maybe, without extreme medical intervention which usually just does not work.
I’ve had the strangest questions come to mind. Will she be able to eat? Dr. Collins says, she might, she might not. There may be too much swelling in her throat. The thought of that makes me cry. Again, he said we’ll have to consider how much intervention we will decide to make in cases like this. I don’t want to decide these things.
Frankly, right now I just want to go to sleep and pretend this is all a dream. I’m so glad my God gives me the freedom to just go to sleep and rest in Him when I need to. I love that about Him. I love the fact that my husband is more than happy to use up every single vacation day to go with me to the doctor in Nashville. Because really, trying to find my way there would probably be hard for me, even though I’ve been 4 times. I tried to pay attention today so that I would know for next time. I love it that when we prayed as a family tonight, all of our kids lifted up our situation before the throne of Grace. I love that. I love the fact that I was starting to feel overwhelmed with sadness tonight and a dear lady from church emailed me with encouraging words.
Actually now that I’m typing all of the things that I love tonight, I’m not feeling quite as sad as before. I still want to go to sleep though, and I think I will. Goodnight dear friends. I love it that you’re praying for me and our family 🙂 Please remember to thank God for Dr. Collins, Jennifer and the rest of his team.