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This Blog was created to help us tell the story of our daughter Bayta and her batles with a rare birth defect called Omphalocele. She is now home but has an even rarer diagnosis of Pentology of Cantrell. It is our desire that this blog, the good the bad and the ugly parts, can be used by other families to help guide them through the scariest experiences of their lives!
The Family
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Omphalocele Web Pages
Blog Archive
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2009
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October
(191)
- Down 25 grams
- Bayta in ballet shoes! (day 13)
- Tired but gaining! (day 13)
- Look what my brothers made me!
- Look ma no lines!
- Exhaustion sets in
- My first outfit (day 12)
- Lost weight :( (day 12)
- Our doctors are total professionals
- Harrison dressed as anakin skywalker
- CPR trained
- 1st feed done (day 11)
- Going going gone
- Good burp!
- She fed for a minute and passed out
- Where we left her
- How I know Bayta is a lady
- This is page one of baytas meds
- Can you believe?
- Drain tube out
- Battle of the doctors
- Update on surgery
- Passed out on mamas milk
- Surgery may sign off today! (day 11)
- Tired
- Other parents on the ward
- We got a prediction on departure date
- Boring day (day 10)
- Getting old (day 10)
- Sad news
- The plan (day 10)
- Last night
- On a big girl bed
- Amanda not feeling well
- James
- She likes it she likes it!
- Next step... eating milk (day 9)
- Back to eating like a pig
- Met with Genetic Doctor (Day 9)
- Surgery bows to Bayta
- Are you sitting down?
- Surgeons vs. Neonatal
- Good morning so far (day 9)
- She did it again! (Day 8)
- Bayta battles another tube and wins! (DAY 8)
- Pray for poop x2
- Saw this truck made me think of a friend
- Bayta says
- Surgeons report (day 8)
- Great news (day 8)
- Bayta falls asleep
- Back in mommas arms if only for a moment
- Look who is wide awake...
- Marcy and mike wells came to visit today
- Do we have pentology of cantrell?
- Dr wArner stopped by
- 5th floor nicu
- From the garage I walk to security
- Wait it gets better
- A day in the life (day 7)
- Sorry Bout yesterday
- More good news
- Look ma no vent (day 7)
- This girl is amazing!
- Goodnight Bayta!
- Pray for no vent tomorrow
- Where is my cuddle therapist?
- Bayta wakes!
- Boys momma and daddy miss you
- Tammy can u teach Allena to email me again
- Mom studies monitors at bedside
- Baytas battles(day 6)
- As bad as it is
- Can't remember of I sent this yet
- Amanda leavin the hospital yesterday
- She opened her eyes for two seconds this am
- Great card from Tammy that captured yesterdays mood
- Update
- What keeps me going
- Allena I am in nicu
- Back at bedside (day 6)
- Frustrated (day 6)
- Met the surgeons
- En route
- Oh, hello 2 am
- One last blog tonight
- Home at rmh (day 5)
- Is bayta stable?
- Where is the patch
- Was there dAmage to organs?
- Did they fix it?
- Ask quetions I will answer via blog
- A good day gone bad(day 5)
- 10 minutes till she is back in nicu
- Just in
- Please hug the boys for us.
- Still waiting
- Nothing yet
- What we now have to worry about
- She is in surgery now
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October
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Welcome friends and family
Thank you for viewing our blog. We wanted to thank everyone for all their prayers and kind words... but we were getting overwhelmed... so we started this blog. If we don't answer your questions then send us a line and we will try to update the page regularly. Bayta is now at home. She has a small scar and a slightly imperfect belly button to show from her ordeal. Her father has more gray hairs than he would like to admit. If you have a child with an Omphalocele, gastroschisis, or Pentology of Cantrell call us and we will be happy to talk to what we have been through. If you have a question about Bayta, us, Children's Hospital in St. Louis, Ronald McDonald House, our Doctors, our Nurses, or the defects listed above email me Lawyer4rent@gmail.com.
Hey you guys! Just hang in there....she knows she wants to and she'll figure it out. She's had a hard week...be patient and it will work out. Skin to skin is great....on mommy's chest where it's nice and warm and cozy, if they'll let you do that. You don't have to force her....gentle encouragement is all she needs and a little time. I hope you're not sore Amanda. You know you can call, anytime!
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