Sunday, September 7, 2008

Lucia Grace Webster - Day 10






Hello to all of our friends & family! We hope you all will enjoy our updates to this blog! Time has just been flying lately & it's hard to believe it's already been ten days since Lucia Grace's big entrance into our crazy world! She's doing very well & both Randy & I are adjusting fairly well to the challenges (sleep deprevation?) of parenting. We've been having a lot of fun - today we went for a walk in a park near our house... planned for a picnic... but I left Randy's meal at the checkout counter at Safeway & didn't realize it until we were at the park! Needless to say, I left Randy & Lucia at the park while I drove back to Safeway & picked up his lunch! Sometimes I feel like I'm operating on half a brain, but we're getting through it!


I do have an update for those of you who haven't already heard. There was a bit of bad news that we received last week though... We had found out when I was about 14 weeks pregnant that we're both carriers of the Cystic Fibrosis (CF) trait... we opted against the amniocentesis or chorionic villus sampling that could have told us if Lucia had it & instead chose to wait until she was born to have her tested - her chances with parents in our situation were 75% she'd be okay & 25% she'd have the disease... well, let's just say we're not taking her to Vegas anytime soon - not the best of luck... She has a bad gene (mutation) from each of us, we found out about her diagnosis last Wednesday when she was 6 days old. That same day they got her in to the CF Clinic at Mary Bridge & we received a ton of information from Dr. Ricker - the pulmonologist in charge of the clinic & his staff. It was oddly reassuring to receive all of the info - even though it was still shocking since we'd just found out about 2 hrs prior. It used to be that the life expectancy was so short for CF patients, but Dr. Ricker feels that with all of the medical advancements in recent years with CF, there is a good chance that a baby born now will not have a shortened life at all. We do not know much about her specific genetic situation - apparently there are 40 some variations that they check for in the DNA screen, 5 of those are considered most common & she's does not have one of those 5. The good part is that we do not automatically know that she has a severe case, it could be that she has a much lesser form of the disease. But, we've already initiated treatment with 3 meds - pancreatic enzymes (little granules that I put on her tongue before each breastfeeding), ADEK vitamins (bottle feed them with breastmilk once or twice a day), and 1/8 tsp salt once a day... she HATES the salt... we'll have to ask the doctor how necessary it really is right now or if he has a better way to get & keep it down... that's the only tough one. I guess you could say that Lucia Grace is part of a whole new generation of CF kids - she was the earliest diagnosis they've ever had at Mary Bridge, due to the fact that Randy & I were tested while I was pregnant, so we immediately had Lucy tested. It is a really good thing that we're able to begin treatment early, the hope is that we prevent complications from arising & really stay on top of things. We couldn't be happier with the care we received at Mary Bridge, Dr. Ricker actually prayed with us at the end of the appointment which sent us both into tears but meant more than we could ever explain. I'd be lying to say it isn't hard, we both have times of keeping our composure & other times of being pretty emotional. But, every time we look at her sweet little face, we're reminded how incredibly blessed we are - and she's just such a happy & content baby, she seems to be handling things just great! Our biggest request of friends & family is for us all to have a positive outlook on the whole situation. We just know our little girl is going to lead one amazing life! Her Grandma Susan Amondson was very happy to learn that cardiovascular health is very important to people with CF & I think she'll be taking it upon herself to make sure Lucia Grace has the best fitness routine of anyone!


So, this is the first of hopefully many postings... Feel free to leave your comments & shoot me an email with any tips! I'm new to this! Randy & I greatly appreciate the love, support & prayers we've been receiving from so many of you - thank you from the bottom of our hearts!

12 comments:

Unknown said...

Thank you for writing the blog I am sorry to hear about Lucia, but blessed to know that she has wonderful parents.. I will keep you in my prayers, sending you lots of love and energy, love leah

tamC said...

Christy, I had already heard about the CF from Teresa. My first thought was that, of all the people I know...you and Randy have SO much positive support in your lives, it's amazing! Lucia is so blessed to have you all! And YOU are so blessed to have her. Love you all.

tamC said...

Christy, I had already heard about the CF from Teresa. My first thought was that, of all the people I know...you and Randy have SO much positive support in your lives, it's amazing! Lucia is so blessed to have you all! And YOU are so blessed to have her. Love you all.

karmeno said...

I am so proud of you and Randy- you look so comfortable and I can't wait to hear all of your parenting stories...and to meet Lucia!

jmayer said...

Christy,
You never seize to amaze me. Lucia is so lucky and blessed to have you and Randy as parents. She is beautiful!!!
Jodie

tiffany jeanne said...

Hi Christy! Lucy is gorgeous! Congratulations! Hang on to these early moments...they go by sooo fast (take lots and lots and lots of pictures!). Feel free to keep up with my family on my blog, too!

Take care!
Tiffany Newgard (from work)

Margaret said...

Well, you've just added a beautiful girl to our Webster tree! Congratulations. Norm always said that my "4th trimester" was the worst. An easy pregnancy followed by a few months of exhaustion and emotional ups and downs! So the only tip I have for you is to "Hang in there and cherish those precious baby moments"! Love you 3! Aunt Margaret

Kelsey Williams said...

Hey Christie - You are amazing and one of the strongest people I know! Little Lucia is one of the luckiest people I know; you and Randy are going to be great parents (two words - MOMS UNDERGROUND). Lucia is a true miracle that will bless each and everyday! Sidney, Mia, and I can't wait to meet the new and improved Webster Family (does this mean that you won't be taking Christmas Pictures with your pets???) As far as parenting advice - I have none, I am still trying to figure it out! I do foresee some mommy daughter trips in the future!!! I love you guys!

katy said...

Oh Christy she is just beautiful! It was so good to see you today! I am already looking forward to the next time we can get all our babes in one room. You are one fabulous mama and little Lucia is the luckiest gal around! Love, Katy

Anonymous said...

When I came home from seeing Lucia, all I could say is "I have never seen a prettier baby!" It is so true! I just love her!! She is so lucky to have you two as her Mommy and Daddy. I am so proud of you both. I can't wait for Brady and Lucia to have as many great memories as Christy and I did growing up! Just as long as they don't splash on the top of the water in the pool! ;) I love you all! -Jaymie

ManDarin said...

hugs to you all. If ever you have a need we will be there for you.
your friends

Jocelyn said...

Christy,

Lucy is so beautiful! CONGRATULATIONS on the arrival of your precious daughter. The CF thing is a heartbreaker, it sounds like you and Randy are doing all the right things. The most powerful medicine is the power of prayer, and I am in prayer for your family. I can't wait for our kiddos to meet and grow up together!

Your friend and equally sleep deprived ;)
Jocelyn