Monday, February 23, 2009

Lainey's List

Lainey's List

Life with CF.........

1. Lainey was my third pregnancy in 4 years! I had ALL day sickness for about 4 months and that is when Zofran became my best friend! I gained a lot more weight with her than I did with my other two pregnancies. I had placenta previa and a large bulging blood vessel in my right leg which could be quite painful at times. Other than feeling exhausted (who wouldn't be with a 3 year old boy, 1 year old boy, teaching 21 first graders, and being pregnant), I had an easy 2nd half of my pregnancy. I opted out of all blood tests since my two boys are healthy, plus nothing would have changed my mind about keeping my baby girl! My awesome OBGYN let me see her sweet face on the 3 - D ultrasound machine at each appointment!
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2. Lainey Noelle Smithson was born Tuesday, May 20, 2008 via a scheduled c-section. She weighed 7 lbs. 3 oz. and was 19 1/2 inches long. She was absolutely perfect!
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3. Lainey was great at nursing. She ate and slept....we were loving the nurses waiting on us! The doctors mentioned being concerned that she had not had her first bowel movement...I was excited because I remembered how much I hate the first ones with my two sons! The nurses tried forcing her to drink formula and performed rectal stimulation trying to get her to pass her first stools. She did not seem to be in pain and was not bothered by the attempts from the nurses.
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4. When Lainey was 2 days old, the doctor ordered an x-ray of her bowels. At this point I was still unconcerned because I always had issues using the restroom as a child. She was still acting okay until late afternoon. She began spitting up yellow stomach bile (the nurse told me it was just spit up) and her stomach was distended. It was apparent that she was beginning to feel uncomfortable. The doctor believed that Lainey had a bowel obstruction, possibly atresias (we never saw the blockage in the 3 - D ultrasounds, although her stomach was noticeably larger toward the end of my pregnancy...but my boy's stomachs were large also). They whisked her away to the NICU. She stayed in the NICU in Gainesville for 2 days until the Angel II ambulance transported her to Egleston Children's Hospital.
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5. Lainey had surgery on Sunday, May 25, 2008 on what we believed to be a bowel obstruction, possible Hirschprung's, with the chance of atresias. Although we were nervous, we were sure they would be able to fix her and we would be leaving several days later. The surgery took longer than we anticipated. The doctor informed us that Lainey had meconium ileus and it look like a classic case found in children with Cystic Fibrosis. We were devastated. They had not said anything about Cystic Fibrosis. The meconium was so thick that the doctors were unable to push any through the intestines. They placed a t-tube in her bowels rather than an illestomy, in hopes that it would be enough to drain the meconium.
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6. Lainey was a trooper through her surgery. The evening after her surgery she needed a blood transfusion, but was doing well otherwise. She finally passed her first stool at 9 days old, although it was less than 1/4 tsp! On June 5th (Lainey was 16 days old) I spent the night with her at the hospital. The next morning the doctor came in the room to inform me of her having Cystic Fibrosis; Delta F508 and R560T mutations. I will never forget the feeling of finding out such devastating news after getting such little sleep and not having any family with me at the time.
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7. Lainey was introduced to her enzymes and applesauce for the first time when she was 20 days old. Although having difficulty gaining weight kept her in the hospital longer than we wanted, she was released on June 18th after being in the hospital for 29 days.
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8. Lainey takes one Ultrase MT18 (equivalent to 4 Ultrase) with each meal or snack. She takes 1 ml of Vitamax Vitamins per day, 2 ~ .3 ml of Fer-In-Sol (iron) per day, and 2 ~ Prevacid 15 mg capsules per day for acid reflux. She is also on a 30 calorie Alimentum and Polycose diet (regular formula or breast milk is 20 calories) with 1/4 tsp of salt in each bottle. She drinks approximately 20 oz. of formula per day and eats a bowl of 30 calorie rice cereal with 2 jars of food. We add 1 TBS of vegetable oil per jar of baby food.
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9. Lainey gets 2 ~ 30 minute CPT (chest physiotherapy) sessions per day....and she loves it! :)
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10. Lainey has taken Bactrim 2 times for a green runny nose, but that is the only antibiotic she has taken outside of her hospital stay. She currently receives Synagis shots once a month to help prevent RSV. These shots are given by a home health care nurse who comes to our house...or Gigi's depending on where Lainey is hanging out!
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11. Lainey goes to the Cystic Fibrosis Center at Egleston Children's Hospital in Atlanta once a month and goes for regular checkups at her pediatrician's office here in Gainesville.
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12. Lainey is babbling up a storm, sitting up, scooting, and into EVERYTHING in her reach! She is always smiling, laughing, and overall a very happy 9 month old baby. She has taught a lot of people in our small town A LOT about Cystic Fibrosis and will hopefully continue to spread awareness through her story.
Thanks for keeping up with our sweet Lainey Bug's story!

Here are some pictures of our Lainey Bug from our trip to Target and playing at home!

Our Flower Bug

Bunny Bug!

Happy Bug!



Smiley Bug!

Silly Bug!

Babbling Bug!

Have a good week!

The Smithsons
Sid, DeAnn, Logan, Liam, and Lainey

8 comments:

Aspiemom said...

I'm sure that was quite a shock when she was dx.

Whenever I see pictures of Lainey, I always think of Zoe. Do you know who Zoe is, another young CFer? Anyway, she has big blueberry eyes like Lainey does.

I love her flower petals and bunny ears!

Julie said...

I'm finding it so interesting reading everyone's stories. Thanks for sharing Lainey's. I still can't get over how cute she is!

Phoenix's Mom said...

Thank you for sharing your story. I agree getting the results are a moment in your life you will never forget.
You have a beautiful little girl, that looks very happy!

Aspiemom said...

http://zoeforlife.blogspot.com

They live at the GA/FL border in St. Mary's. If you see Zoe's baby and toddler pictures you really notice her large eyes being like Lainey's.

Zoe's mom, Jada, is on cf.com quite a bit and that's where I got to "know" them.

Christy said...

Oh how beautiful she is!!!

I really can't imagine the devastation you parents feel when hearing that your child has CF. Your bravery is amazing!

Thanks for sharing Lainey's story.

Somer Love said...

Love those eyelashes!

You Cf Moms are so strong!!!

Tooter's Mommy (Courtney) said...

Lainey and Olivia would be great friends!! They have begun very similar (Olivia's obstruction didn't require surgery though).

Our clinic has us add Parkay to all of Olivia's veggies so a fattening, yummy, buttery taste.

I always love all the bows, headbands, etc you adorn her with.

Thank you for sharing!

Zoe Isabella said...

Hello!
Well, thanks to Mrs. Aspiemom....:)
we have met! Your daughters eyes are beautiful! Zoe's G.I. doctor always tells her that he feels like he looking into the Med. sea while looking into her eyes! :)
Is there a Gainsville Georgia, or do you guys travel from Gainsville Fl.??
I'm glad she is doing well.....a rough start. That diagnosis. Hits hard. I remember the feeling oh too well.
Look forward to getting to know you guys!
Take care,
Jada