Five requirements
1 omphalocele: check
2 no pericardium: check
3 heart defect: technically yes for two technical reasons vsd very small and her heart is inverse and on the wrong side of her chest
4 diaphramic hernia: this is a given... I have xrays of her stomach in her chest
5 cleft sternum: not present so we avoid the diagnosis
I thought taking a moment to break that down would help... Now the problem is I still don't know what the heck we have !?!
-- Post From My iPhone
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Darick, What you have is a beautiful baby girl named Bayta Sophia who is continuing to beat the odds! She is a fighter with the will to overcome the obstacles she has been forced to deal with at such a young age. Did you and Amanda make the right decisions as far as the prenatal care/delivery/neonatal care? ABSOLUTELY YES!!! She has survived the 1st (almost) week of life, has had amazingly competent surgeons (will have to think about the 1st surgeon though), and for the most part, amazing nursing care (would be happy to talk with you about this one)...Keep positive, focus on her abilities, and keep taking time off (actually helps to lower your stress level when you are together with Amanda because, just as you are her rock, she is yours). I have yet to find a Hemphill without the constitution of an ox (not meant in a bad way, meant as an analogy of strength and determination). Please if you have ANY questions about any part of Bayta's care, please don't hesitate to hound the NICU nurses to get the answer you, Amanda, and Bayta need. They may be employed by the hospital, but essentially they work for Bayta...She is the CEO, you and Amanda are the owners...Bayta's continued triumphs are the mission statement...You expect excellence from ALL your "employees"....And as such, Bayta should receive it...Know that I love you all, have you all in my heart and prayers, and if you need ANYTHING, please do not hesitate to call/text/email me anytime (day or night)...I have this blog site up 24/7 keeping track of Bayta's amazing progress and marveling at the strength, love, and determination of two of the most amazingly wonderful parents ever!
ReplyDeleteThank you for posting this clarification for those of us on the other side of your blog :). I had looked it up on the internet but it didn't make much sense other than Omphalocele was part of it. I am so glad she is doing so much better! Thank you too for including the visual and dialogue of your daily routine to get to Bayta. It is good to see your sense of humor has not dissipated in this trying time. Tell Amanda it is a good thing she is "mooing". Is she freezing it for later use since it is that good colostrum stuff?
ReplyDeleteSo, I was looking on the internet, and found in the literature that some authors have suggested that pentalogy of cantrell has varients which are less severe, sometimes with only four of the five signs - and prognosis is extremely good for babies with mild intracardiac defects. But I agree with Jacquelyn, it doesn't matter - She had two extremely successful surgeries that corrected two things (which were mild as far as PofC is concerned), her heart works just as it should, and she's quite the little fighter. If you want me to research this more, just say - I have access to all the journals, and I'd be happy to send you anything you want. Just e-mail me - nugenta at mail dot nih dot gov.
ReplyDeleteLove,
Allison N.