Tuesday, August 23, 2011

Genetic Counselors and Perinatal Physicians...

Had an appointment this morning with the Genetic Counselor and the Perinatal Physician we saw on Friday.  Although it was a tough appointment, it brought to light some interesting information and some tough choices and decisions.

First we met with the Genetic Councelor, Maggie. She was a total sweetheart and made sure we understood what it is that is going on and  why this is all happening. She sort of let us know how the process works with the chromosomes and biological aspects. She assured us that when the time comes we would be surrounded by drs and nurses who are well trained in this type of situation. She will be the one who we deal with mostly as far as putting things in motion. She says that she believes its not a genetic issue for us, its just one of those times when we got struck by lightening. But there are a lot of tests they will be doing after the baby is born to determine our risks for the future as well as any cause they can find. She finished up by telling us that, there will be 2 days that are going to feel like the worst days of our lives, the first one being the day the told us something was wrong and that it was terminal, that one we've been through. The next one will be the day everything is put into motion and we get to meet our little angel... After that, we have to let the greiving process take place and take it day by day.

We talked to the perinatologist, Dr Ney, after the counselor was finished. She said that as she was looking further and further into the ultrasound results she was seeing more and more things wrong as a result of the kidneys missing. Without water the stomach has also not really formed and same thing with the bladder, without being used and trained to work its not forming properly. It seems the list is getting longer and longer of things that are going wrong.  We talked about the possibility of carrying to full term.  First she said there is a 60-70% chance that the baby could die in utero before birth. In ways I think this would be easier as this would be eliminating our decision to terminate and when. We are considering the option of letting mother nature take its course for a while and see if it will be taken out of our hands. But we would have to give it a time limit if we chose to do this, we wouldn't want to wait months and months to see if mother nature will take over. It would have less effect on Evelyn if we didn't go to full term. Derrick is a bit more concerned for my emotional well being saying that the longer we hold this out the harder its going to be. The only benefit to making a decision to induce, is for the hope of having some pictures before the baby passes on... as well as the opportunity to hold and love the baby for whatever time we can. We are still up in the air on this, I don't intend to make a decision for a little while. It can't be a decision that I just jump to, I have to feel it whole heartedly, I have to feel that it really is the right thing to do.

Dr Ney is going to check with our dr and see if there is any chance of Woodwinds allowing us to deliver there and if Dr Landers could deliver the baby. We aren't sure about Woodwinds policy on this type of situation. Dr Ney was thrilled to hear that we have a Doula who is willing to be there with us during this difficult day in our lives, she was even happier that it was someone we feel close to and not a random stranger we've never met. She suggested an induction as a D & E carries more risks. But she did explain that an induction can take some time to get started, but once it gets started it'll go very quickly. She said that baby could live up to 2 hours after birth because of the oxygen I have provided up to this point if the baby makes it through labor and delivery. We have the option of having a company called "Now I lay me down to sleep" come in and take photos for us. They are a company that volunteers in situations like this, they would then give us a disk with all the photos on it to do with what we wish. If we give this baby some time to develop just a little futher, we might be able to get some pictures to cherish and take with us forever.

My dad has looked into some information for us, taking just one more thing off our plates right now.  He was able to find some funeral/burial cost information and locations. Just one less thing we have to do right now, when we know the time is coming, we will make the necessary calls at that time and have a vague idea of what to expect.

We have decided to cherish, love and give our little one as much life as we can while it is still here with us. So we have decided to give it a name. Now we just have to decide on a name, tough decision number one for us through this process.

I have had some comfort in a thought that was brought to my attention by my mom. She said that my grandpa, who passed a few years back, will be up there waiting with open arms for this little one to join him. He will be there waiting to love and care for this baby until we get there. For whatever reason, this along with my grandpa's photo on my desk, has brought me some peace in dealing with this heartbreaking and lifechanging experience. The thought of him up there, playing with and taking care of our little one has so much power over me, then the thought moves into the other relatives I have up there who are waiting (and probably arguing over who gets to hold it first) like Auntie Pam, Aunt Florence, and all of Derrick's loved ones who have passed too. 

1 comment:

  1. I am so sorry for your pain. Remeber Uncle Chuck is waiting too and he loves babies!
    Thinking of you,