Frequently Asked Questions about CF & how it affects our lives...

Often times I get asked different questions about Ayla's CF and how it affects our every day life...and most recently how it will affect our baby due Nov 28th.

Some of the questions I can answer, some I cannot...here are a few I have been asked lately and my best effort at answering them.

Q: Does Ayla have to take pancreatic enzymes forever?
A: Yes, Ayla will have to take these pills every day for the rest of her life, unless a miracle happens.  She takes 3 pills at each meal and takes up to 20 each day!
Q: What does her day look like living with CF?
A: Pretty Normal, the differences are fatty meals for all meals and encouraging high-cal snacking.  She does her Airway Clearance Therapy twice a day for 30 minutes and does an inhaled nebulizer treatment before bed. Unless she is sick then the number of treatments go up.
Q: How will CF affect our unborn child?
A: There is a 25% chance this baby will have CF, a 50% chance this child will be ONLY a carrier (like Larry and myself)
Q: Does any of the routine blood work that my Dr. orders determine if the baby has CF?
A: No, the only way to tell if the baby has CF is to do an Amniocentesis
Q: Am I going to have an Amnio to determine if she has CF?
A: No, I am not going to have this test.  I always thought for sure I would.  But with this pregnancy I have felt differently.  Of course my Dr will be taking extra good care of me and be watchful.  I am going to have her tested when she is born.
Q: Does anyone else have CF in our families?
A: No, as far as we know from testing my mom, sister, Larry and I are carriers.   None of our other family members have been tested.
Q: How did the Dr know Ayla had CF?
A: Bowel Obstructions are a common sign of CF and Ayla had one in utero.  We did not know for sure until she was tested through newborn screening.
Q: What is CF?
A: Click here to read about CF

There are a lot of questions about the future that I can't answer.  We can only do our best to keep Ayla and everyone else in our family healthy and pray for the best.  For now I am just trying to enjoy my pregnancy and the normalcy of it all...

Had To!

My sister Allison (2010) 16 wks

Me 18 weeks!

                                                                 

                                                                 

No we are not pregnant at the same time but I raided her maternity clothes and realized we had both taken this picture around the same time!  Thought it would be funny to compare them~

Isn't my sister GORGEOUS!!???

18 Weeks!

18 Weeks!

This picture Ayla took of me (LOL)

I am trying to be better about posting these pics, I know I will love having them once I am not pregnant anymore!

Changes....hmm....well my nausea has subsided a bit.....I am currently on day 4 with no vomiting spells so that's great!  I have had more energy and more motivation to get out and do things!

Name update: This weekend we may have found THE name for baby girl Tucker....it has meaning, it starts with an A and goes great with Ayla!  I will reveal it soon once we have firmly decided.

Other than that our next check-up in July 8th and I will be 19 weeks and  4 days!  Halfway there!!

I am going to go do Ayla's treatments and get ready for the rest of the day!

Things are so different so far......

Before I graduated from High School I had a name picked out for my baby girl.  Ayla was so easy to name and I never knew until a few years ago the profound meaning it would have in our lives.  

"Oak Tree"

With this pregnancy I really felt like I was having a boy and had a name and everything all picked out.  Even though deep down I really longed for a sister for Ayla...and I am so grateful she has one on the way!  

But.......I have no idea about a name for this girl........every name I hear-I think they are cute but they don't seem fitting for our second child.

There is a name I like and it has meaning to me but it's taken.  My husband also loves it and us agreeing on names is kindoph been tough.  I call him old fashioned and he calls me crazy!  I like boy names for girls and unique names that you don't hear everyday and he looks at me like i'm crazy..hahah...BUT....I don't want to take someone else's name and that's how it feels.  

This child's name has to have meaning though, b/c of the super special meaning Ayla's name has to us.  Just hearing a name off tv isn't going to cut it...And for some reason my personality won't let me plan anything else (room, colors, etc.) until I have figured this out....

So Suggestions please......

It's a.........

Girl!!!

We are very excited and a little surprised about our news!!  We had everyone telling us this was a boy and we thought so ourselves.  But I have to admit that deep down I wanted Ayla to have a sister at some point.  There is something to be said about a "sisters" bond.  

With that I know that my husband Larry like all men really long to have a son.  Although I'm not sure he's willing to risk having a 3rd wedding to pay for, we could always try again...

We are stumped as far as naming this girl....we had the boy all picked out but I can't decide on a girl name...I had a few in mind just in case...

All of her measurements were perfect and these normal appointments are really beginning to grow on me.  We are praying for this little girl's health and believing she will be CF free!

It's so great to call her a "her" instead of Baby all the time....

"Something To Blog About"

The last few months things have been crazy!  I co-chaired our  Great Strides walk and was very busy with the planning of that.  Which we did awesome and more than tripled our total from last year!  And as exciting as all of that is. Something even more exciting has been brewing in our family.......We are going to have another baby!

After a year of trying to get pregnant it happened, and I am now 12 weeks and 2 days (yes I am past 12 weeks!) We have been keeping it hush-hush, basically not posting it on blogger or facebook.  And we all know if it's not on facebook it's not official yet (lol).

With my miss-carriage last year I wanted to wait until the first tri-mester was complete to tell people especially Ayla.

We had our 12 week appointment yesterday and I got to hear the best sound in the world, a strong heartbeat!  I have really felt a lot of peace that things are going to go smoothly this time but I have to admit on the way to the appointment yesterday I was nervous.  When I sat in the exam chair and she placed the doppler on my stomach I just put my head back and prayed.  She found it very quickly and let us listen for a few minutes.  I just took a huge deep breath and made eye contact with my Dr and she knew exactly what I was feeling.  My Dr. and I have been through quite a bit together and I feel fortunate to have her.

Our next appointment is June 13 and we find out the sex!! No I am not one of those people who can just wait to find out and plan a gender neutral nursery....no way!  I have to know so I can have everything the way it should be! And we are very excited!!

Ayla has CF and GI clinic @ Shands June 8 so that appointment will be here before I know it!  I think they should be pleasantly surprised with her.

So we are very excited and now I can finally blog about what I have wanted to for so long!  And you will get to hear all the juicy details of my nausea and vomiting that I have been doing quite a bunch of ( I have even lost weight at my last appt) -no I will spare you details but I have been sick!

So prayers please for this baby and our family.  We are longing for a healthy child and a "normal" pregnancy~

~krista

PS. Ayla was very excited and insists on naming the child Kyliegh, Haley, or Lilly (3 of her girlfriends) lol...

A short update....

So I have been out of the blogging world for a while.  Due to a few different things, but mostly being so busy I haven't had time to think.

This Saturday we finished out Great Strides Walk and it was an awesome success!! I was co-chairing the walk and we more than tripled our total from 2010 with $50,000 raised for all with CF!!

All of you CF parents and CF patients reading this I am so happy to be able to say that Destin, FL Great Strides will positively effect you or your child's lives!  Isn't is so cool how raising money for your child or yourself touches the lives of so many others??!!

I couldn't be more thrilled with the way the day went, it was such a celebration!!

Ayla Update: She is doing great! We go to clinic in June it has been a few months longer due to scheduling issues but she is doing amazing!  No sickness since FEB and eating wonderfully.  Can't wait to see what my big girl weighs!!

Thanks to everyone who helped with GS, I had an amazing team of people!!

Krista~