It is funny how calm I am. It has been a very long week, I got to meet my Hospice team, two doctor visits, Halloween costume shopping, a fair and a corn maze, a family reunion dinner, and work!! I don't think I have had time to think a lot about Zooey except for when she kicks me :) She loves chocolate and hates when I am in a bent over position, these two moments are when I feel her the most. The other night I was sitting in the floor with Andy and had my hand on my belly, then my hand moved! She kicked so hard that I finally could see it and not just feel it. Things like this make it so hard to believe that there is something not right about my sweet Zooey.
The specialist we saw was very calming, he didn't focus too much on the bad but just the realistic. He also said that they were going to treat this like any other pregnancy but are going to focus more on me, to keep me safe. That was the same for my OBGYN this morning. He explained a little more about what kind of stress the baby goes through during delivery, and it started to make more sense to why they think she won't make it through delivery. Something that they all have in common, even the Hospice group, is that they haven't ever dealt with a TRISOMY 13 baby. So, we are all up in the air to what Zooey is going to be able to handle and how long she will be with us. The next thing I have to do is to get our pediatrician in on all that is going on, which I am sure she hasn't had to ever deal with this either.
I think that is why I am so calm, I realise I am not going through this alone. It is scarey and new for us all and it doesn't always have to be sad. Zooey has been given to me for a reason and maybe not just for me but for a lot of people to experience this and maybe cherish their time more.
Even my oldest understands how different it will be. We got to spend the day together, just her and I and she is very smart! Tori is always a surprise on what she understands and how she looks at it all. Plus she isn't afraid to talk about it, unlike most adults. Sometimes I can just see what people are thinking, and just wish they would say it and not feel bad for me. I know I am going to suffer a loss but that time is not here yet so I am going to enjoy it as much as I can.
One thing is for certain, Zooey will never be forgotten and she will be an experience for all of us.
Monday, October 29, 2012
Sunday, October 21, 2012
Zooey Noel
This weekend has been very good for me. I have learned how wonderful people can really be. The amount of support I am getting sometimes sets me back because it makes me realize how much more I can give too. There has been tears shed but with that comes understanding. I am being told that I am teaching some people how to be strong and they are learning that there is more to life then what they thought, very humbling as you can imagine. I am not doing this to be strong at something or to make people think I am great, I am doing it because I have to. She is my daughter, and know matter how long she is with me, that part will never change.
I have enjoyed this weekend with my girls, Tori and Mya, and with lots of my girlfriends. It was nice to get away from explaining everything and just act like everything is okay. We got out to the fair and took our time and just enjoyed the food and crafts. Later that night, ate dinner with friends and Andy. I laughed and was even able to talk about her without crying :). One other thing I found out this weekend is that she likes chocolate, or at least her body does, just like her mommy!
And, if you didn't notice the title, we named her. She has now gone from she to Zoe Noel. Her daddy had Zooey
picked for sometime now, and I picked Noel. I wanted something kind of peaceful but different.
Tomorrow starts a new week, I have to meet with the Hospice people in the morning and we go back to my specialist Tuesday morning. I am hoping I still feel like I do now after all that but I guess it just depends on what they can tell me. I will try to keep my head held high and just keep pushing back at all the negativity.
I have enjoyed this weekend with my girls, Tori and Mya, and with lots of my girlfriends. It was nice to get away from explaining everything and just act like everything is okay. We got out to the fair and took our time and just enjoyed the food and crafts. Later that night, ate dinner with friends and Andy. I laughed and was even able to talk about her without crying :). One other thing I found out this weekend is that she likes chocolate, or at least her body does, just like her mommy!
And, if you didn't notice the title, we named her. She has now gone from she to Zoe Noel. Her daddy had Zooey
picked for sometime now, and I picked Noel. I wanted something kind of peaceful but different.
Tomorrow starts a new week, I have to meet with the Hospice people in the morning and we go back to my specialist Tuesday morning. I am hoping I still feel like I do now after all that but I guess it just depends on what they can tell me. I will try to keep my head held high and just keep pushing back at all the negativity.
Wednesday, October 17, 2012
October 17, 2012
Well I got the call from my genetic counselor today. She confirmed that she does have full term Trisomy 13. We already knew what the results would be but we did the amio just to have a definite answer.
On July 4th, when I found out I was pregnant, I would have never guessed this is where I would be. Pediatric Hospice will be the next phone call I get. They will be able to help us with everything, from counseling to the care at home if she makes it that far.
When I had a test run back in August called Materna 21, it is a blood test to have early detection of any issues such as this, I swore I would never abort it if I found out the baby had problems. I had in my mind such things as Downs or Edwards, not what my baby has been born with. It is practically a death sentence.
When we had the ultrasound done last Monday we saw a prefect little girl, her profile is beautiful and she has all her limbs, I just knew that test had to be wrong. But then the doctor came in and gave us ALL the bad news. First he said she had a under developed heart chamber, the one that pumps the blood to the body, then she has enlarged kidneys due to cysts that have formed with the kidneys. The good thing right now is that she is holding fluid still, but don't know for how long. And last, she has what they call Dandy Walker syndrome. She has not and will not form the left side of her cerebellum. All this is what looks like a perfect baby girl. The really bad thing about Trisomy 13 isn't just what she has wrong with her now but that the T13 effects everything even more when she is out of my body's protection. It can effect her breathing and her body's ability to continue functioning.
I have cried everyday since then but I know we were given her for a reason. Don't know quite yet why but I know she is to be special. I think about what I am doing to all mine and Andy's family, Andy included, and sometimes I feel selfish that I am making everyone go through this with me. I just hope everyone understands in the end.
I have read and heard and seen so many stories of other families' journey through this and it is sad but they are all happy that they didn't give them up, even with all the heart break. If I ended it now I would still have the heart break but just with guilt and wonder to added to it. Ending it will not change the sorrow. It started back when I got the test results back and it will always be there, I will just feel better knowing I am trying to give her a chance.
On July 4th, when I found out I was pregnant, I would have never guessed this is where I would be. Pediatric Hospice will be the next phone call I get. They will be able to help us with everything, from counseling to the care at home if she makes it that far.
When I had a test run back in August called Materna 21, it is a blood test to have early detection of any issues such as this, I swore I would never abort it if I found out the baby had problems. I had in my mind such things as Downs or Edwards, not what my baby has been born with. It is practically a death sentence.
When we had the ultrasound done last Monday we saw a prefect little girl, her profile is beautiful and she has all her limbs, I just knew that test had to be wrong. But then the doctor came in and gave us ALL the bad news. First he said she had a under developed heart chamber, the one that pumps the blood to the body, then she has enlarged kidneys due to cysts that have formed with the kidneys. The good thing right now is that she is holding fluid still, but don't know for how long. And last, she has what they call Dandy Walker syndrome. She has not and will not form the left side of her cerebellum. All this is what looks like a perfect baby girl. The really bad thing about Trisomy 13 isn't just what she has wrong with her now but that the T13 effects everything even more when she is out of my body's protection. It can effect her breathing and her body's ability to continue functioning.
I have cried everyday since then but I know we were given her for a reason. Don't know quite yet why but I know she is to be special. I think about what I am doing to all mine and Andy's family, Andy included, and sometimes I feel selfish that I am making everyone go through this with me. I just hope everyone understands in the end.
I have read and heard and seen so many stories of other families' journey through this and it is sad but they are all happy that they didn't give them up, even with all the heart break. If I ended it now I would still have the heart break but just with guilt and wonder to added to it. Ending it will not change the sorrow. It started back when I got the test results back and it will always be there, I will just feel better knowing I am trying to give her a chance.
Tuesday, October 16, 2012
October 16, 2012
I have decided to start blogging. This is very scarey for me and also VERY new! The hope for this blog is for me to voice my feelings and things that happen to me on my new journey.
For those of you who don't know yet, I am pregnant. I am pregnant with a little girl who has Trisomy 13. It is hard for me to find words to describe it but lets say it isn't a great outlook for her. I want to stay hopeful for her but I know what the outcome will probably be. If I am lucky to carry her full term that will mean that I am able to see her pretty face and hold her but I will never know for how long.
This is just the beginning of a very long journey.
For those of you who don't know yet, I am pregnant. I am pregnant with a little girl who has Trisomy 13. It is hard for me to find words to describe it but lets say it isn't a great outlook for her. I want to stay hopeful for her but I know what the outcome will probably be. If I am lucky to carry her full term that will mean that I am able to see her pretty face and hold her but I will never know for how long.
This is just the beginning of a very long journey.
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