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copteacher
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 Posted: 04/07/03 - 08:17 Post subject: Questions about Abby amnesty. (long)
Several people have privately asked questions about Abby. Some of the newer people do not know her whole story, so let me do two things here
1) Allow you to ask any questions you want and
2) Tell you all (for those who do not know) a little bit about her.
Abby and her brother JJ were born 6 weeks premature. The doctors had been monitoring Abby for several weeks prior to that because she was not growing well. There was a debate at 28 weeks whether to deliver Abby and JJ because of the growth issues. It was decided by all, that Abby would stay in as long as she could to give her the best chance and JJ even a better chance.
Robin came to a point where she could not feel Abby move that much so she was taken to have an ultra sound and there was no amniotic fluid around Abby. A few hours later they were born.
The first thing I remember hearing was Abby crying, which was so awesome because we were so worried about her. 1 minute later JJ was born. 4 minutes after that were the words that changed my life forever.
| Quote: | | Mr. Oaster, there is something that concerns me about your daughter. |
Abby was born without a rectum, so she could not poop, thus she could not be feed, this needed to be corrected but she needed to stablize first.
She was taken to ICU right away.
The next morning we had a long chat with her doctor who prepared us for the long road we had ahead. She was diagnosed with VATER syndrome a very rare genetic disorder.
At this point it was decided Abby needed to go to CHOP for some surgery and evaluation. The next day Robin held Abby for the first time just before she left for CHOP. JJ was released from the hosptial a week after he was born.
At CHOP Abby saw 45 doctors, had over 20 different tests and was found to have a serious heart problem that would have to be surgically repaired right away before her rectum could be fixed. Again though she was very unstable and would not survive open heart surgery. She was taken to Cardiac ICU where to this day she was the smallest baby they ever had (2 pounds 9 ounces). She was given a lot of medicine to stablize her and the surgery would wait for the weekend. The hardest thing to see was the crash cart next to her with all of the medicine doses drawn up "just in case"
Here is where the greatest miracle happened. By Monday morning she was given an ultra sound in her heart and the problem was resolved by only what the doctors said was a miracle. She was sent back down to Neonatal intensive care because the heart issue was not an issue any longer.
She would spend a total of 200 days in the hosptial before she came home. While there, she had the following major surgeries: Colostomy bag, trachestomy, stomach "g" tube for feeding and numerous other exploratory stuff. She was placed on a ventilator because her trachea would collapse without something holding it open and she was working so hard to breath she could not gain wieght. We spent Thanksgiving and Christmas at CHOP.
Two days after she came home, a nurse overdosed her on a medication and Abby stopped breathing due to fluid in her lungs. Abby was helicoptered back to CHOP, when she was in the helicopter she was not breathing and I would not know for 45 minutes until I got back down there. The docs at CHOP's ER did a great job in fixing her. The doc who helped her there now takes us every time we come to the ER since he fell in love with Abby. If he sees us come in, he just takes us right back. 
She was sent back home after an 8 day admission, home for 2 weeks and back in the hospital for 4 months because the nursing agency could not properly staff the case and care for Abby.
Finally, the day after mothers day Abby came home for good. (Robin did not want anything for mothers day that year, she got it)
That being all said Abby is seen and followed by the following doctors
Cardiology, Pulmonology, Endocrinolgy (blood sugar), Developmental (cognitive and emotional development), Urology (for kidney issues that she has), gastroentronology (for her GI bleeding), orthopedic (she has fused vertabrae in her spine), Sugery, Opthamology, ENT (for ear problem and they monitor and evaluate her trachea), as well as her regular pediatrician for regular baby stuff.
She has physical, speech and occupational therapists, as well as a teacher who all come to the house about twice a week.
She she has come home she has been re admitted to the hospital 15 times. 7 for breathing issues and 8 for GI bleeding (still as yet undetermined why.)
She has spent a TOTAL of 400 days in the hospital.
Sometime next month she will likely be decanulated from her trachestomy and she will no longer need a ventilator.
Her GI bleeding will likely be lifelong unless they find a cause. She has had major GI bleeding for 16 months now (this is completely unrelated as far as we know to any birth issues).
Her prognosis is fair. She will live an undetermined length of time but to what degree of normalcy we do not know. She gets sick very easy and has been on a lot of medication her whole life.
Abby though medically complicated is actually quite easy to take care of. All of her doctors adore her and love her fighting spirit. She has endure much and will endure much more.
I hope this answers a lot of your questions.
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purple hayes
Frightened Inmate #2
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Posted: 04/07/03 - 08:26 Post subject:
I think reading that may have answered most of my questions, but you posted that other day that you'd have to 'work up' to pushing Abby in the stroller. If she's JJs' twin, why does she weigh so much more? Is that just the medical extras?
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copteacher
Adjunct
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Location: Teaching in the Halls of Justice
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Posted: 04/07/03 - 08:34 Post subject:
| purple hayes wrote: | | I think reading that may have answered most of my questions, but you posted that other day that you'd have to 'work up' to pushing Abby in the stroller. If she's JJs' twin, why does she weigh so much more? Is that just the medical extras? |
She is on steriods to help with the GI bleeding and her breathing troubles she has been having. It decreases swelling nice but increases her appetite tremendously.
Abby is actually clincically obsese (over 120% of ideal weight). That is so if and when she gets sick she as a reserve to pull from. When she has gotten real sick she has lost as much as 1/4 of her body weight, with the extra it is a "cushion," so the body can feed off of itself for a little while.
And she is not as mobile (i.e. walking) as JJ and Hannah so she does not burn as many calories also.
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airehead
Oompa Loofah
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Location: Between here and eternity...
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Posted: 04/07/03 - 08:55 Post subject:
You answered most of my questions also.
I think you've shown amazing faith through all of this.
How do her siblings treat her? Are they curious, or is at all just regular business for them?
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copteacher
Adjunct
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Location: Teaching in the Halls of Justice
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Posted: 04/07/03 - 09:08 Post subject:
| airehead wrote: | You answered most of my questions also.
I think you've shown amazing faith through all of this.
How do her siblings treat her? Are they curious, or is at all just regular business for them? |
JJ actually can use properly most of the equipment for Abby. He knows all of the names of the equipment and her medical devices. he is very good with her, albeit they have the occasional fights like all siblings. He does miss Abby when she is in the hospital though. He said once when we were in the car, I want to go see Abby.
Hannah too is indifferent. It is all they know so it is normal for them.
It is neat because all of the kids in the neighborhood, ask questions and really get to see and appreciate someone like Abby. They all look out for her also.
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pokychick
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Posted: 04/07/03 - 10:22 Post subject:
Thanks for posting this, Joe. Abby is a lucky little girl to have parents like
you and Robin.
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Dancer
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Posted: 04/07/03 - 10:48 Post subject:
Thanks Joe-she touches my heart!
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elkid
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Posted: 04/07/03 - 10:55 Post subject:
 Wow. The Oasters are made of strong stuff.
Did the doctors ever determine why she had no amniotic fluid around her or why she has VATER Syndrome? And why did she get VATER but JJ didn't?
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copteacher
Adjunct
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Posted: 04/07/03 - 11:02 Post subject:
Wow. The Oasters are made of strong stuff.
Did the doctors ever determine why she had no amniotic fluid around her or
she stopped peeing. She also had a very small umbilical cord (it was the size of a straw, usually the size of a sausage). Also her placenta had only one working vessel, as opposed to three.
why she has VATER Syndrome?
Good question, I will defer that one to God. It is how God decided to make her and all of the children he makes are special. It is just Abby did not come perfect to us humans .Do not know.
And why did she get VATER but JJ didn't?
Not sure. No one really asked but since they are not identical (not sharing the same placenta) they are really as different as any brother or sister.
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runaroundsue
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Posted: 04/07/03 - 14:11 Post subject:
I think the reply to elkid may have already given me an answer:
where did the poop go intero-uteral or those first days afterbirth? I'm assuming that since she was premie---in the womb was not an issue as she probably did have any.
I'm assuming that they were monitering the amniotic fluid all along and the fluid loss happened quite rapidly.
Is the developmental delay due to low-birth/premie complications, Vaters, or fluid loss, or unknown?
Thanks for being very candid with your friends
My SIL used to be a neonatal nurse and not all parents decide to stick it out when its tough.
sue
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copteacher
Adjunct
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Posted: 04/07/03 - 14:30 Post subject:
where did the poop go intero-uteral or those first days afterbirth? I'm assuming that since she was premie---in the womb was not an issue as she probably did have any.
Her rectum was connected to her vaginia and it came out there
I'm assuming that they were monitering the amniotic fluid all along and the fluid loss happened quite rapidly.
It gives a good indication of nutrition. There was a great discordancy (weight) in growth (48%), they do not like much discordance. They noticed it at about 20 weeks when Abby was 20% smaller. (They were small to begin with)
Is the developmental delay due to low-birth/premie complications, Vaters, or fluid loss, or unknown?
It could be anything, including the overdose, Vater syndrome is not know for mental retardation.
Thanks for being very candid with your friends
My SIL used to be a neonatal nurse and not all parents decide to stick it out when its tough.
Thanks-we had to get in a few docs faces sometimes to get things done, (not the gas-passers thought, they rock  ) and it is not easy. Parents must walk away sometimes and get away from the hospital as well. Just to clear the old noggin.
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kattzoo
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Posted: 04/07/03 - 15:29 Post subject:
Your post brought tears to my eyes. What a sweet, brave, tough little girl! You and your wife are blessed to have her! I think God knew exactly what he was doing when he chose you as her parents.
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camelia bedelia
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Posted: 04/07/03 - 15:55 Post subject:
What happened to the nurse that od'ed her?
Is she eating anything orally yet?
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copteacher
Adjunct
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Posted: 04/07/03 - 16:15 Post subject:
What happened to the nurse that od'ed her?
Nothing, she was fired. I could've pushed a criminal investigation and a law suit but did not want to drag Abby through it and have to relive the experience.
Since Robin is the director for the nursing company now that staffs abby's case the first thing she did was look up the file. Basically the nurse was fired and the PA dept of health was not notified. They should've been. The director at the time let's say was very imcompetent.
Is she eating anything orally yet?
NO she will not chew food. We are having a very rough time with that. She drinks like a champ but no solid food. Soft food yes.
She is frustrating her OT and Speech therapists I am sure you understand CB
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camelia bedelia
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Posted: 04/07/03 - 16:39 Post subject:
| rtpd113 wrote: | NO she will not chew food. We are having a very rough time with that. She drinks like a champ but no solid food. Soft food yes.
She is frustrating her OT and Speech therapists I am sure you understand CB |
Send out to Iowa. We'll get her eating. 
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