Tuesday, June 30, 2009

Grayson's Update for 6/8/09

We had our latest visit to see our Doctor yesterday.
Grayson still looks okay on the ultrasound. He shows no signs of heart failure, and moves around a good bit. He is up to 4 lbs and 4 oz.

The situation we are in now is with me, not him. I have had a few small contractions, nothing regular though. But also my cervix has started thinning as shown by the ultrasound. That puts me not being able to do much anymore. Hopefully I have not dilated.

I will still be going to work, but only because I am not on my feet all the time anymore. My new job is at a desk, so its alot better on me. Plus it is at the hospital where we will deliver, so there is no better place to be.

It does make us very nervous and scared that I may not make it to my induction time at 38 weeks. I just want Grayson to have the best chance he can have....and that means trying to hold him in a while longer.
I want to have him keep growing and get a little bigger and stronger.

So this is where we are, basically not knowing when Grayson will be ready to make his entry. Its all up to him, God and my cervix.
Please pray that I can hold im in for a few more weeks, and that he will get stronger.
Please continue to pray that we can bring him home. Even for a little while. and that he will be comfortable.

Thank you to all of you for your thoughts and prayers. We still need them evern more now than ever. We do know that Grayson has a Guadian Angel all his own. A little redheaded one named Kinsey, and I know she is with us all now.

God bless...

Grayson's Update on 6/2/09

Just wanted to send out an update on our Dr's appt this morning...
easier to tell everybody at once this way.

Grayson is now 3lbs and 4 oz. His heart still has a VSD/ASD (two small holes in his heart), but the function looks good and there are no signs of heart failure at this time. He is measuring a little small, about 2 weeks behind... but we knew that he would be smaller than normal.
He is moving around alot, and doing okay otherwise. Of course nothing has changed with his Trisomy 18 diagnosis... unfortunately. But we were glad to be able to see him on the ultrasound moving around with a strong heartbeat.

I had a few problems with some dizziness and just feeling a little funny over the last day or two, but that has all gone away. Dr. Wendel said just probably some issues with getting up too fast and my blood pressure dropping a bit. It was also up just a little the other day, but is now normal and I am feeling okay.
I am having to slow down on doing things (which is hard for me), and just try to take it easy.
I will be taking care of myself to give Grayson the best chance he has to be with us for awhile.
Of course there are no guarantees still on what will happen. Will he survive to term? Will he survive delivery? Will he be able to come home with us?
These are all questions that nag at me every second of every day...and the hardest thing is just not knowing the answers.
Taylor and I still are praying to just be able to have him with us for awhile and bring him home. We don't want to have to come home without our baby this time... even if we only have him for a short time at home. It would still be better that way. And of course the most important thing is that Grayson is comfortable.

We also spoke to a Neonatologist this morning, he will be at the delivery if at all possible. If not, one of his partners will be there. We wanted them involved just so that we can all be on the same page for what is best for Grayson. We don't want to put him through anything that he doesn't need to go through. We all agreed to do what is best for Grayson, no matter how hard it will be for us. He is the most important thing right now. This means there will be no ventilators or drastic measures done. There is no reason to put him through anything like that... I have seen too much of that over the years, and won't have anything happen to my son that isn't what should happen.

If things go as we hope they will, I will likely be induced around July 7th. Thats saying I do not go into labor before that time. We ask for prayers that I am able to keep him in until that time... It will be a much more controlled situation if I don't just go into labor. Also all of my Dr's will be able to be there with us.

Please just keep us in your prayers...we need them now more than ever.
and most of all, Pray for Grayson.

Saturday, June 20, 2009

A Long Pause....

It's been a really long time since I have posted anything here. It's not because Kinsey hasn't been on my mind, let me assure that.
Taylor and I found out some news not long after we got home from the Ole Miss Football trip for my birthday. We found out that I was pregnant.
On my birthday I took a pregnancy test, and it was confirmed. We were both excited, sad, nervous, happy and scared to death at the same time.

All had gone well with the pregnancy until March. Everything seemed normal, and the baby looked good. We were still nervous and just praying everything would be okay with the birth of another child. I firmly believe that Kinsey didn't make it due to distress in labor...which SHOULD have been detected. There is no good reason she is not with us here today.
On March 5th we had a Level II ultrasound done. We knew something wasn't right by just the way the tech acted when we asked her questions. After she was done, our Dr. walked in. We have been through so much losing Kinsey...and we just wanted to have a normal healthy baby, however thats not what we were told.
The baby had 3 "markers". Choroid Plexus cysts on the brain, a Ventricle Septal Defect (hole in the heart), and femurs that measured a little short. The three of these together were a sign that there could be something wrong. We were given the option of an Amniocentesis, I wanted to think about it for awhile.
There was a good chance that the baby would have Down Syndrome, or another Trisomy disorder. Trisomy 18 or 13. Both of which are terminal.
To say we were devastated is an understatement. I decided later that day that I could not wait. We had to know as soon as possible if there was something wrong with our baby. I had the amnio done that afternoon.
We also found out something else that day.
We were not going to find out the sex this time of the baby, but once we knew there may be something wrong...we wanted to know.

It's a boy.

On Monday the 9th we were driving home from somewhere, when I got a call.
I knew that it was the results, and I knew they weren't good by the tone of the lady's voice.
Our baby was positive for Trisomy 18.

We were given all choices when we went back to see my MD. Choices like ending the pregnancy, or carrying to term. We felt we had no option. We carry him to term. I could never have lived with myself had I dont anything else. I do however find this to be a very personal decision when you know you are carrying a child who is terminal... It's just not an option I could have handled any other way. Taylor felt the same way.
One hour with our son would give us memories of a lifetime.
What we had to pray for now was that he just be comfortable, and that we could maybe get to have him for a little while.

This is the copy of a letter Taylor wrote when we found out about our baby boy... who by the way we have named Grayson Thomas. I named him the day we found out the results of the tests. He is named after his big sister Kinsey Grace. Appropriate I believe.

I am attaching the email now from Taylor:

Wanted you to know...
This is an extremely difficult email to type. I wish I could call all of our family and friends to tell everyone what is going on in our life right now, but I just can't. Many of you don't know that Kristi is pregnant because we wanted to wait to be sure everything was fine with our child before we told everyone. We we're hoping to be able to tell everyone that we are expecting a healthy child, but that is not the news we received.
Last week during our 20 week ultrasound we got some disturbing news. Our second child was noted to have a few "markers" that potentially indicated Down Syndrome. Kristi and I knew during the ultrasound that something was wrong when we asked if everything was normal; the ultrasound tech was a little distant and told us the Dr would have to talk with us about that. Of course we were concerned, worried, mad, and everything else all tied into one. When Dr. Wendel walked in, he talked to us about pregnancies that are not normal and gave us a few scenarios that pertain to our situation.
We know that our baby boy has a heart defect, cysts on his brain, and he is not developing like a normal child. Kristi and I decided to have an amniocentesis to confirm or exclude problems with our baby. Waiting on those results was extremely difficult for both of us. Unfortunately we got news yesterday that shocked us both. Our boy has a chromosome disorder called Trisomy 18. It is a rare genetic condition that can best be describe as a "fluke". The outcome for these children is extremely poor if they make it to term.
Dr Wendel and the genetic counselors told us that Kristi has about a 40-50% chance of having a miscarriage. If he is born at term his time with us will be short. Depending on the extent of his heart defect and the potential lung issues we may have as little as a few hours or potentially a couple of months.
We were given options of terminating the birth because of the severity of his condition. It's not an easy decision to make, but we made up our minds. We decided that an hour with our baby boy is something that we can cherish and remember for a lifetime. God willing he will be born and not suffer, but we don't know at this point. Our worry is that he could live his short time on earth in pain, but we will do everything within our power to make sure that doesn't happen.
I wish I could call everyone and tell you we are OK and that everything will be fine, but I can't do that right now. After Kinsey died, Dr Wendel told us that his goal is to get us home with a healthy baby. Unfortunately that is not going to happen. The waiting game is the hardest part. We don't know when the inevitable will happen, but we do know what the end result is. There is some solace in knowing this time I guess. Burying our second child is not going to be easy and the days between now and then are going to be filled with sorrow. All I can ask from all of you is to please pray for our son and for us as well.

Kristi and Taylor