Tuesday, January 27, 2009

Amnio result are IN

I prepared myself for the absoluted worse, and hoped for the absolute best. There was some chance she would have down syndrome, so they checked for that. Ellie does NOT have down syndrome. There was a 25% chance she would have cystic fibrosis, by inheriting the CF mutation gene from both Simon and myself. You don't have to be real smart just past high school biology to know that there is a 50% chance she's just a carrier, and another 25% that she doesn't have either CF gene.

The amnio showed that her dealt odds are the first 25% where she inherited both CF mutation genes. So, she does have cystic fibrosis. (Inhale/exhale). I prepared myself for this news. But, no matter how much you prepare yourself, the news still takes a you back and it still has to sink in. Now my baby is considered a "special care baby" at my high risk doctor. Her and I will continue to be monitored throughout the remainder of the pregnancy. We will speak to somebody else in the office about next steps as far as understand things better. She will set us up to meet with the CF specialist here in the area. We will meet with him prior to the birth and he will follow up with care after the birth.

I'm glad we are already in the process of moving. I didn't feel comfortable bringing home a baby with CF into this apartment. I will be parting with my dog. Ellie will have enough problems with breathing as it is, I don't want to throw a dog in to make it harder on her. Since our house we are in the process of getting, is brand new, nobody has lived there, so we know there hasn't been pets in the house to get dander and stuff in the carpet. Getting rid of the carpet is on one the list of things we will do sooner than later. When we can do it, we will.

Since Simon's CF mutation isn't the classic one, we don't know how classic her CF will be. It could be classic with all the problems, or it could be just severe sinus/allergy problems, breathing problems, and a lot of upper respiratory problems. We probably wont be for sure about the severity of her case until after she's born.

I'm not sure if I'm just ready for to fight this war or if it hasn't completely sunk in yet. Probably a little of both. Nobody wants to hear that their baby has a problem. But, the news could have been a lot worse. I think I'm prepared to handle the cards dealt to us with this. She is still our baby and our love for her isn't any less. I'm just praying that as there are more advances in the medical field that the mid 30's life span will increase. I think I love my baby girl more now than before.

This starts our process with CF. I guess after the birth you will get to follow a family through blogging, as we go through the battles of cystic fibrosis. I'll probably do a lot of getting my thoughts and feeling out about this.


Elana Kahn said...

OMG sweetie, I am so sorry. I will pray that your little girl has a less severe case. I'm in shock, so I really don't know what to say. Instead, I'll just give you a bone-crushing hug. *HUUUUG* You'll get through this...with all of our help. :-)

Morgan said...

I'm sorry for your bad news hun, I know this is the LAST thing you want to hear but I know it happened for a reason. I really believe God made it this way for a reason, and he never gives you more than you can handle so I know you guys will do just fine. Put it all in his hands and everything will be fine...just pray for strength and guidance!

Christina said...

I'm so sorry Sherry. I hope that her CF isn't severe and that she can live a normal, healthy as possible life.

To A T said...

(((HUGS))) Sherry! I know this is going to be a hard, emotional road for you, but you are such a strong woman! I know you are going to be such a great mommy to little Ellie!

You 3 are in my prayers!

~*JaYmE*~ said...

Oh Sherry I'm so sorry. I'm really shocked... I guess you just never think that could happen to you. I wish there was something else I could say. I'm here if you need me. We all are. ((((((((HUGS)))))))

Katey said...

I noticed that you follow my wanted to check yours out! Sorry about your little one having CF...but everything will be ok...promise! CF is a blessing from God. I know that's hard to see now, but you will one day! If you ever need anything or have any questions...ask away! I'll be praying for you guys!

65-roses said...

I hope beyond anything that she has a very mild version of CF. Please bear in mind I know someone with CF who is in his 50's. The age expectancy will undoubtably increase. Think about how far its come in the last 10 years. Xxx

Cindy said...

Hi Sherry,
I saw you are following my blog, so I wanted to introduce myself. My daughter Reilly has CF, and she is 5. She was not diagnosed until 19 months, but has been relatively healthy.

I know that it is terrifying to find that your precious little baby has a life threatening disease, but there have been so many advances in medicine. Fifty years ago, kids didn't go to kindergarten, and now the average life expectancy is 37. Remember that over half of the people with CF are living PAST this age. Please do not hesitate to contact me with any questions you have. And don't believe everything that you read online. Your baby could have a mild case, but like you said, you will not know until she is born. This is not the death sentence that it was many years ago.

Hang in there, and I will keep you in my prayers. (((hugs!!)))

ewilliams_83 said...

Sherry I don't know if you remember me from WebMD but I was on there with you briefly (I was antimuse13). Firstly, congrats on becoming pregnant- that's wonderful news! Secondly, I'm sorry to hear that your LO has CF. No matter how much you try to prepare for it you never can but like Morgan said, this happened for a reason & God would never give you more than you could handle.

Lil' Chris' Mom said...

I'm so glad you found my blog, so that I could get to know you better and hopefully help walk you through this. I have a 20 month old son with CF. We knew it was a possibilitly before he was born, but didn't find out until he was 2 weeks old from the newborn screening.
Listen to me when I say you are are lucky that you have a jump start on things. Many parents don't find out until their kid is 2 or 3. Knowing this early is the best thing. The healthier they are when they are young, the better they will be later on in life.
If you looked at my son, you wouldn't think he has CF. He hasn't had any major nebs or anything. He has only gotten 2 colds in the last 20 months! He just gets a cough every now and then, but every kid gets coughs and has to take antibiotics is the way I look at it.
So, don't worry. We have a whole loving CF blogger community here and we will help you in any way possible:)

Julie said...

Hi Sherry-

I'm sorry about the news. I also found out through amnio that my son Seamus has CF. He's three now and doing great. I'm so glad we found out before he was born because we got a jump start and started treating him the day he was born.

I know how hard it is to hear the news about your little baby, but it really is a blessing to know and not have to go through all the misdiagnoses that lots of families have to deal with.

There is a large Cf blogging community that can be a big help and comfort to you. If you have any questions about dealing with prenatal things or what to expect when Ellie is born, feel free to email me.

Take care.

Oma & Opa said...

I am new to your blog via my daughter-in-law's acure4lilchris. Know that even when things seem so uncontrollable, God is still much in controll and loves you all very much. I will be praying for you, your husband and your precious daughter. My grandson was diagnosed at 2 weeks of age and he is doing fantastic, praise God!
Matthew 19:26 "Jesus looked at them and said, "With man this is impossible but with God all things are possible."
Isaiah 41:10 & 13 "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." "For I am the Lord, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."
Betty Ann

Carrie said...

Hi Sherry,
I found your blog through Lil' Chris Moms blog. I know how scary this all is. I was horrified when I first heard that my precious baby could possibly have cf. I am so sorry that your baby has cf. But as the others have said it is good that you find out now and can start being proactive in her care as soon as she is born. My son had a rough first few years but is doing wonderfully now. Anyway you can read our story if you want to...just click on the link at the top of my blog that says "Sawyer's Story". If you have any questions or just need support there are so many wonderful bloggers that will be more than happy to help you...including me!

Alicia said...

Hi Sherry,

Learned about you from Lil Chris's Mom. I have a 3 yr old little girl with CF. I'm sorry to hear that Ellie tested positive for CF. But please know that the blogging CF community is a supportive and loving one. We will be here for you!

Misty Dawn said...

My thoughts are with you and your DH as you learn to cope with your LO having CF. Its great to see that you've met some people that have LO's with CF that can help you. Their posts were really encouraging.


littlesteps said...

I'm so sorry Sherry. I don't know what else to say other then I'll be praying for you and your little girl.


The Smithson Family said...

Hello! I found your blog through lilchris's mom. My daughter was born with meconium ileus; a bowel obstruction. We were unaware of our ties to CF (we already had 2 healthy boys) and the news absolutely blew us away. There were times I had wished we knew before she was born and other times when I think I would have been stressed the entire time. If I were to have another child (I am not planning on it because 3 children are enough), I would want to know. It is a lot to take in all at once, and it isn't easy, but I have found comfort in blogging and meeting people through their blogs. Hopefully this will also help you.
My husband also has a CF mutation that is not common. So far, our daughter has only had digestive issues (no lung, breathing, etc.)
Good luck with the remainder of your pregnancy and I will continue to follow your story. Check out Lainey's story at :)

Deb said...

a baby girl!! how exciting! she will be here and your life will be even more blessed than it is now! i have my own little baby who is 15 years old. he has two copies of "the classic" cf mutation (delta f 508), increasing his odds for a more severe case... i am happy to report that he is on the varsity swim team at school, just got back from a ski trip to canada (he loves those double black diamonds) and is living life to its fullest.

ellie is so lucky to have such loving parents AND a jump start on her health! early intervention definitely helped my son, i truly believe. and i am sure everyone has told you... the advances in the medicine are incredible. even in the past 5 years.

good luck to you, and if you need anything, let me know!

Anonymous said...

Hugs & prayers