Just want someone to understand

lulubugsmama · May 2013

Maybe this is more of a vent, or crying out for extra support even. Whichever it may be, I hope I am not alone.

When DD was born we found out that her newborn screening for Cystic Fibrosis came back abnormal. We have been through 2 sweat tests and have come back elevated, but not a positive. A month ago my husband and I elected to do blood work instead of another sweat test. We got the results on Friday. DD has one mutated CF gene and one adnormal gene. She will have another sweat test done when she is a year old to determine if she does in fact have CF. Right now, the doctor is referring to whatever she has as a "Cystic Fibrosis Related Disorder".

As much research as I try to do on this, I am still lost and confused. I feel like the blood work was supposed to give us answers and it only left me more in the dark. Everyone is trying to be supportive, and in their own way they are, but I don't need sympathy...I just need friends and support. My husband is dealing with this in his own way, which makes it hard to support each other (he keeps it all in). I find myself crying often and other times ready to tackle whatever is thrown at us.

I know things could be much worse. I just want answers and I want to understand what is going on with my baby girl. Has anyone else been through this or know someone who has?

danieliza1127 · May 2013

There is a poster on the Parenting board who has a child (a daughter I think) with CF and she has a blog. I can't remember her name though! You should crosspost (XP) there and ask.

I'm really sorry you're dealing with this. It sounds like what you're going through is probably totally normal - at times just wanting to cry and be sad and other times being strong and doing what needs to be done.

Mrs.RockyM · May 2013

I really don't know much about CF, but we experienced something kind of similiar (but not really) when I was pregnant with DD2, and I wanted to let you know that I'm thinking about you guys and sending you virtual hugs.

As for you and DH dealing with things differently, I've found these and other boards to be a huge help, especially when you may not be ready to discuss things in the real world.

Kimberskirby · May 2013

My sister in law went through this with her daughter. A whole year of being afraid and worried. Her story sounds identical to yours. My niece is now 4 and perfectly fine. This is true in the majority of these cases she later found out. However, her first year of life was full of anxiety and worry over this. I hope it's the same outcome for your LO. I'm sure my sister in laws advice would be to try and concentrate on other things, and not let this define your child's first year. Difficult, I know! Hugs!

Cdienst · May 2013

I can tell you this for sure.. Take one day at a time. Right now you love your precious baby girl, she loves you right back. I have not heard of the related disorder before (am Im a nurse). I can only wish/pray/hope that you will soon learn that your girl is healthy or something can be done to make it so. Although you may not find much online or in boards about this disorder, do know that you are not alone. As a parent you will worry your head off about everything when it comes to your babies. Whether its cancer, a disease or disorder, or a stranger.. your mind will never rest. Just know that you have her, and you love each other always. I recommend you to speak with your doctor about your concerns and press for more answers. Best to your family.

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