- I had a textbook pregnancy while carrying Olivia. I gained a good amount of weight, but the doctors weren't concerned. I declined getting tested for CF because no one on either side of the family had it and Chris and I honestly knew nothing about it. I'm still okay with my decision to not get tested because it would have caused me to be stressed out for the duration of pregnancy since we had no clue what to expect.
- Olivia was born on March 10, 2008 at 5:28 pm via cesarean. I was induced, but never got past 1 cm dilation. She was 9 lbs 3oz and 21 inches long.
- Olivia was moved to the NICU on March 11 for meconium ileus.
- About 3 days in, they told us that she most likely had Hirschsprung's Disease or Cystic Fibrosis (for those who aren't already experts). They felt like it was probably Hirschsprung's and we just hoped and prayed that it wasn't.
- After she passed the meconium her weight was 7lbs 14 oz.
- She was sent home with us on March 23 - Easter Sunday.
- We struggled with feedings and weight for the first 2-3 weeks. I was breastfeeding her and her hunger was never satisfied. She would feed 17 times a day (no joke) sometimes for an hour and a half (so raw!!).
- She had a prolapsed rectum for the first month whenever she would have a bowel movement. It hasn't shown it's ugly "face" in a while.
- She was deemed as "Failure to Thrive" and they did her sweat test on April 9. On April 11, her pediatrician called us with the news that Olivia had CF (delta F508 and 3859 delta C). They immediately put her Pancrecarb and she finally got full!!
- She has monthly Clinic appointments and is currently getting monthly RSV shots.
- She was hospitalized in October for 6 days. She had an upper respiratory infection that wouldn't go away.
- She had her first bronchoscopy on October 28 and then had her first PICC line placed on October 29. She was such a trooper through it all. Her next bronch will be done over the summer.
- She got Salmonella poisoning over Christmas.
- In the past year she has been on the following antibiotics: Cipro (once), Bactrim (three times), Augmentin (once) and Rocephin (via PICC line).
- Her current meds are listed on the sidebar (like always).
- She will be celebrating her First Birthday soon and I'm planning a big hoopla for her!
I hope you all had a great weekend and a great week ahead of you!!
3 comments:
I'm always afraid Seamus will get a prolapse. I'm not sure what to look for. Was it really obvious to see or did you know because she was in lots of pain?
Why are they giving her another bronch? Is that something they just do routinely at your clinic or do they think she has a problem?
It's interesting to see how different all CFers are and how different the CF clinics are.
Is it common for babies with CF to get bronchoscopies? I never had one until post-transplant.
Thanks for sharing all of that. All of you mommies of CFers totally amaze me!! You are my heros.
I enjoyed reading about Olivia's story. She and Lainey had similar starts!
Isn't it amazing how fast they grow up?
DeAnn
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