Mental Gymnastics

I just couldn't write yesterday. I tried, I started and then stopped. We went to our high risk maternal fetal specialist yesterday and they spent a lot of time with us. It is so much fun to see him on the ultrasound machine. He is quite the mover. He was twirling and dancing and then he tired himself out and had to take a nap. Very sweet. They looked at his kidneys and his kidneys look great. The cysts in his brain seem to have resolved on there own. There is no excess fluid on his brain, which is such a relief as many trisomy babies will develop fluid on the brain to the point of the head becoming so big, a normal delivery becomes very difficult. His heart however, sounds great, but is more enlarged which is probably (at least in part) the reason I have this excess fluid. He is not swallowing so he is not recycling much if at all. They also explained to me they are now concerned about something called mirror syndrome - which the mother actually will mirror issues the baby has such as fluid around the heart or in the lungs. I do not have that right now, they are just concerned. The biggest issue is that Michael has really quit growing. He explained to us that trisomy babies grow at the rate of a bell curve and we are now coming down the other side. Basically he has peaked in growth. He has dropped from the 57th percentile 6 weeks ago to the 27th percentile 3 weeks ago and now he is now in the 14th percentile. He is right around 2 pounds. I am concerned now that his heart could stop at anytime and a friend of mine is sending a heart monitor so we can listen to his heart. That may be one of the best Christmas presents ever. We are going to my regular OB on Wednesday to get her take on all of this and possibly schedule the induction. Please pray he can make it through Christmas. I would really like for the girls to not associate the Holidays with this if possible. If not we will find a way to make this positive, I am painfully aware this is out of my control. He is still busy making excess fluid inside of me and the doctors have decided to not drain the fluid for a few reasons. The first is because the fluid will likely just come right back and the second is that if they do not drain it, the extra fluid may cause me to go into labor on my own which they are in favor of right now because that would be easier too. The good news is that he is now head down. He could easily flip around because of the excess fluid and his size, so we are praying he stays head down as that will also be easier on both of us. That is our silver lining. Sometimes you have to look for it, but it is there...

Bill and I sat up last night and went through the birth plan together just to make sure we agree on everything. We are on the same page. What a mentally exhausting thing to plan for. It is not fun and yet it is good to go through it together as we both feel like we know what to expect a little more or at least know what we would like to expect. We still have to choose a mortuary - ugh! Bill even brought home an obituary for me to read. Those things are apparently not going to just happen on there own. I actually chose my doctor mainly because she delivers at this family birth center and I thought it would be such a joyous experience for my family. It is a really beautiful hospital, but not really the experience I was aiming for. If anyone reading this ever is going through something similar and wants a birth plan I will be happy to share it with you. I was given this birth plan by a labor and delivery nurse that went through something similar a few years ago and we changed a few things for us, but it was a great starting point.

I do not know why peoples opinions about how we should or should not handle this upset me, but right now they do. Some people think we should have terminated immediately and some people think we should deliver in the NICU and put him on life support and honestly, I am still not sure we have made all the right decisions. Who really knows if or what the the right decisions are or if there is a right decision that can be made. We still have more decisions to make potentially. When we got the diagnosis, I remember thinking oh please God, please make these decisions for us because it is just so hard. Well I know in my heart that we have made the right decisions but my head sometimes plays silly tricks on me - so I know this is probably normal, but I have to be honest.

I have been talking with another woman that I was put in touch with and she is pregnant with a baby boy that has full trisomy 18 and she is due the week before I am. I am in awe at her strength. It is pure and her little guy appears to have some different issues, his heart is on the opposite side of his chest, he is missing fingers and he has a cystic hygroma . He too is not growing and she is also developing the excess fluid because he is not swallowing, but she has chosen to give him every opportunity that you would give any other child such as surgery and ventilators. It may be a bit of a different journey than ours. I support her and I can appreciate her decisions as well because it is her child, her body and she knows she is doing what she feels is right.

This morning I got up around 5 a.m. to let the dogs out and crawled back in bed and Bill was holding me and my belly was right up against him and Michael was kicking so hard. It was like he was tyring to reach him. Usually he is not up that early, but this morning he was and he wedged his little feet right up into my ribs and it hurt a little, I enjoyed it. Funny when you know that is all you have and it is borrowed time, those moments become so precious. I love him, this is so hard because I love him.

On another note, I know how hard this is on you right now. I know you do not know what to say to me and I know you are afraid to upset me. I know all of these things. It is ok. It is ok to talk about Michael (I love to talk about him) it is ok to not talk about him. I have no expectations right now ~ on purpose. Understand I don't know what to say half of the time. Sadly I am not alone, sadly we are not the first people this has happened to and luckily life will go on and we are blessed and we are aware of how blessed we are.