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Leanne,
are you able to post your email address so my friend can contact you or is there some way to access it through belly belly
Melinda
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hi all
well we saw the specialist last thursday and he diagnosed a different defect than originally thought - although equally as bad, but more rare. he diagnosed "Truncus Arteriosus" (instead of two arteries (aorta and pulmonary artery) there is only one, so oxygenated and deoxygenated blood mix) and a large VSD (hole in the heart). apparently, TA occurs in 1 birth out of 10,000 so quite rare - lucky us. it will involve a minimum of 3 major open heart surgeries; the first between the age of 2 - 6 weeks, then again at 3-5 years and again at puberty (the later surgeries to replace a valve that does not grow with the child).
we spoke with the specialist again on friday afternoon, to go over it again in more detail and to ask our list of 1000 questions. we went home feeling really negative and horrible and still not knowing what we were going to do. but something weird happened - we had a good night sleept and woke up on saturday morning and we both felt that we wanted to keep the baby and fight. it was strange because we were leaning towards a termination the night before. and once we had made the decision to continue, we both feel almost normal again! and much more positive and happy. there is going to be a huge road ahead of us, especially in the first few weeks after the baby is born. it will be heartbreaking to watch our baby go through these surgeries, but we will just have to hope and pray for the best.
so fingers crossed everyone!! my job over the next few months is to fatten up this little thing inside me, to make it big and strong for when it enters the world in late Feb. so i better go and eat! :)
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leanne, sorry to hear that it's a rare condition but really glad to hear of your decision.
I'm sure bub will grow up all right, big and strong when he/she has wonderful loving parents like you. I think you will all do all right.
I remember about 6 years ago, a colleague's bub had a heart condition, I dont know which one it was, but had to have a surgery when he was born and another couple of years later. Earlier this year, another friend told me that the bub is doing really well!!
xox
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Just wanted to let you know I am thinking of you. I thought I had was scared when I found out Bri had a heart murmer when she was 8 weeks old. She didn't need surgery or anything major, but it was still a scary thing to go through. Have faith. I'm sure all will be OK.
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Leanne I'm so glad you have a sense of peace about your direction now. Your determination and love are going to give this little bubs a good start :hug:
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hi Leanne,
i just wanted to check you got an email from my friend, she said she had emailed you last week but wasn't sure if you got it or not ?
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yes, i did receive your friend's email and i replied this week but havent heard back again yet. so she didn't receive my email? maybe i should send it again? thank you so much for passing on my details to her, it is so good to talk to someone who has gone through something similar.
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Leanne - I am sorry to hear the diagnosis wasn't so good, but it is great to hear you and your partner were able to make a decision that you are both so at peace with. It will be a long road a head, but with the support of your family, friends and people on here, you'll get through. Take care of yourself and enjoy this time watching your belly grow and move, knowing you are giving it the best start in life!
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Good Luck Leanne
Your positive thinking will help your bubba also!!
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well i've slipped back into depression today.... we saw our OB this morning and he has said that an elective c/s is the best way to go for this baby (i had an emergency c/s with our first child, and was hoping for a VBAC for this baby - i even sought out a OB who is well known for his pro-VBAC reputation and extremely low c/s rate). sigh, i feel terrible. the only reason for an elective c/s is that the paediatric cardiologists work 9am-5pm monday to fridays, hence just in case the baby needs emergency care at the very start, they need for it to be born at a convenient time. i know it is best for the baby but i still havent come to terms with the feelings of failure from my first c/s. and if we have any more kids, it will have to be another c/s. it is depressing to know that i will never in my life experience a natural birth
and add to this that i found out today that our private health insurance will not cover the baby as it has a congenital condition - there is a 12 month waiting period. ARGHH
i'm so sick of bad news!!!!! but as my hubby said - we have chosen the path with more complications, so we're just going to have to get used to them
i am not liking the world right now :(
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oh and add to my more bad news - we had another appointment with a different cardio specialist last friday (as a 'second opinion') and he thought it could be one of 3 conditions - Truncus, Fallot's or pulmonary artresia (all are very similar and are hard to distinguish in the womb, you really need to wait until the baby comes out to tell for sure). but he said that the prognosis highly depends on the baby's pulmonary system - which he cannot see or distinguish at the moment - if there is somewhat of a good system, the baby has good outcomes (90-95% chance of having a normal life), but if there is not a good system then the outcome is very bad (most parents choose not to continue treatment as the baby just has to have operation after operation). we wont know if the baby has a good or bad system until he/she is born..... so i was operating on the idea that it should have a 90-95% chance of a good life - now we're back to a throw of the dice, it could go either way.
i think part of me is rethinking the decision to continue.... although my DH is fine with continuing... i'm just so very sick of all this bad news and uncertainty. i cant stop crying today. :(
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Leanne i am so sorry you are going through all this heartache and not knowing what to do.
I just want to send you a big :hug:
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:hugs: I have no words just a :hug:
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Hi Leanne,
Just wanted to let you know i am thinking of you and your family at this time... Best wishes.
I also wanted to say that i was born with a VSD and a murmor. I didnt have an operation until i was 8 years, and i am currently pregnant with bubba #4. I do have to have antibiotics whilst in labour and when i visit the dentist, but apart from that i lead a normal life..
I am happy that you guys are sticking with this bubba, Just think, he/she will love you even more for beleiving in him/her.
Hugs,
Jenni
