Avery's Journey - Childrens Brain Cancer
Tuesday, August 30, 2011
Wednesday, August 24, 2011
We apologize for the lengthy delay in posts. The Christiansen family has had a lot to deal with these past 2 weeks. We went in last week and I was induced on Monday night. After a long 3 days, Jude Avery Christiansen was still born into this world - a beautiful, and amazing little boy. He passed during the delivery which was probably better for us anyway. He was a big boy -- 1 lb 2.5 oz and 10.5 inches long! We spent time with him and then had to say our goodbyes for now. Avery was not there and she is none the wiser, although we plan to make Jude a part of our lives moving forward.
A friend told me I was lucky we produce such strong kids...Jude hung around for 22 weeks to make sure we knew that he was strong enough to take care of Avery from Heaven. I really hope she is right. I guess if you've learned anything about this family in the last 20 months it's that we fight - full blown, from our head to our toes.
We also said goodbye to our nanny Taylor, who has been a tremendous help to us in the last 8 weeks while Sharon has been out. We wish her the best in all that she does in this big world. Starting Monday we will be shifting tactics once again and Avery will start going to a friends house during the week while we work. We'll be changing up her therapy routine a bit but she really is doing well. Her favorite word is still "no" and she was able to stand alone for almost 30 seconds the other day at PT. Not something we ever see, but they swear it happened. Next week I will return to work, hopefully in a better state of mind and a little less sore than now. Jeremy has been doing his best to keep me comfortable, stable, and calm - all the while wrangling a 2 year old that throws her hand in your face and tells you "no". Overall, I think he's hanging in there.
There have been a lot of tears this last week...uncontrolled and random at times, but my little girl always knows how to wipe my face and give me a kiss to make it better. If she only knew how effective that is for me...
Jenn
A friend told me I was lucky we produce such strong kids...Jude hung around for 22 weeks to make sure we knew that he was strong enough to take care of Avery from Heaven. I really hope she is right. I guess if you've learned anything about this family in the last 20 months it's that we fight - full blown, from our head to our toes.
We also said goodbye to our nanny Taylor, who has been a tremendous help to us in the last 8 weeks while Sharon has been out. We wish her the best in all that she does in this big world. Starting Monday we will be shifting tactics once again and Avery will start going to a friends house during the week while we work. We'll be changing up her therapy routine a bit but she really is doing well. Her favorite word is still "no" and she was able to stand alone for almost 30 seconds the other day at PT. Not something we ever see, but they swear it happened. Next week I will return to work, hopefully in a better state of mind and a little less sore than now. Jeremy has been doing his best to keep me comfortable, stable, and calm - all the while wrangling a 2 year old that throws her hand in your face and tells you "no". Overall, I think he's hanging in there.
There have been a lot of tears this last week...uncontrolled and random at times, but my little girl always knows how to wipe my face and give me a kiss to make it better. If she only knew how effective that is for me...
Jenn
Friday, August 12, 2011
It is with much sadness that we write this entry today. Avery is still doing well and we are looming closer to the next set of ALL CLEAR scans - not to worry....today we are sad for another reason.
We had our 2nd sonogram last Friday and some issues came up on the pictures. We were referred to a Perinatologist for further tests and on Tuesday of this week we went in. They performed a higher level sonogram with a more experienced technician and they were able to confirm that Baby C has a double cleft lip, which most likely means a cleft palate as well. Devastating as it was hear that, we were in for a much worse diagnosis. The Dr came in and indicated that not only did they see the cleft issues, but she was also seeing an enlarged gall bladder, kidneys and issues with the heart. She also noted an additional finger on one of the hands and was unable to tell if the other hand had any concerns. They did an amniocentisis to pull fluid from the uterus and sent it off for chromosome testing. We knew at this point this wasn't a good thing and asked for the truth from the Dr. She told us that with that many obvious issues on the sonogram we were most likely looking at a chromosome syndrome that was not survivable.
Yesterday the amniocentisis confirmed the Dr's suspicions and the baby was diagnosed with Patau's Syndrome. The condition is not survivable. It was also discovered that the baby is actually a Boy.
Another one of those "worst things for a parent to hear/deal with" and believe us we are pros at this now. It doesn't get any easier. I am a day shy of 22 weeks and that in itself provides us ridiculous obstacles. Our options were to wait until the baby passes and then have him removed, as most die prior to birth or within days after. Or we could choose to terminate the pregnancy. Our preference was to terminate as soon as possible to avoid further complications or to grow more attached. However, in the state of KS there are laws that regulate when and how things like this could be done and we have missed the cutoff - medical reason or not. Rather than go out of state for the procedure we have decided to have our Dr induce labor and I will deliver the baby in the next few days. We will go through labor and push like normal, but because he is still so young he will not survive once out of the womb.
This is absolutely devastating for us right now. We are struggling to keep it together each day and we appreciate everyone giving us some space and time to absorb this ugly mess that we are once again finding ourselves in. I am looking hard for the message or the reason or the purpose behind this and am coming up empty handed...It feels as if moving forward just isn't in the cards for this family and we are trying hard to not let that feeling get the best of us. We'll get through it I know, but I am reminded with each kick that he is still there with me and that is a haunting feeling I don't think I will ever forget.
Jenn
We had our 2nd sonogram last Friday and some issues came up on the pictures. We were referred to a Perinatologist for further tests and on Tuesday of this week we went in. They performed a higher level sonogram with a more experienced technician and they were able to confirm that Baby C has a double cleft lip, which most likely means a cleft palate as well. Devastating as it was hear that, we were in for a much worse diagnosis. The Dr came in and indicated that not only did they see the cleft issues, but she was also seeing an enlarged gall bladder, kidneys and issues with the heart. She also noted an additional finger on one of the hands and was unable to tell if the other hand had any concerns. They did an amniocentisis to pull fluid from the uterus and sent it off for chromosome testing. We knew at this point this wasn't a good thing and asked for the truth from the Dr. She told us that with that many obvious issues on the sonogram we were most likely looking at a chromosome syndrome that was not survivable.
Yesterday the amniocentisis confirmed the Dr's suspicions and the baby was diagnosed with Patau's Syndrome. The condition is not survivable. It was also discovered that the baby is actually a Boy.
Another one of those "worst things for a parent to hear/deal with" and believe us we are pros at this now. It doesn't get any easier. I am a day shy of 22 weeks and that in itself provides us ridiculous obstacles. Our options were to wait until the baby passes and then have him removed, as most die prior to birth or within days after. Or we could choose to terminate the pregnancy. Our preference was to terminate as soon as possible to avoid further complications or to grow more attached. However, in the state of KS there are laws that regulate when and how things like this could be done and we have missed the cutoff - medical reason or not. Rather than go out of state for the procedure we have decided to have our Dr induce labor and I will deliver the baby in the next few days. We will go through labor and push like normal, but because he is still so young he will not survive once out of the womb.
This is absolutely devastating for us right now. We are struggling to keep it together each day and we appreciate everyone giving us some space and time to absorb this ugly mess that we are once again finding ourselves in. I am looking hard for the message or the reason or the purpose behind this and am coming up empty handed...It feels as if moving forward just isn't in the cards for this family and we are trying hard to not let that feeling get the best of us. We'll get through it I know, but I am reminded with each kick that he is still there with me and that is a haunting feeling I don't think I will ever forget.
Jenn
Monday, August 8, 2011
It's another Girl for the Christiansen's
It's official...another girl for the Christiansen family! While daddy is nervous about the growing number of females that surround him in the house - he is also very excited for another little girl to wrap him around her finger. I'm excited because all those cute clothes we had that many people never saw while we were on our travels will now get a chance to be seen again! Avery is just plain excited to have a sibling coming her way. We've started reading the "I'm a Big Sister" book and she is anxious to help mommy with the baby like the girl in the book does.
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