hey hun
hope your alright? how did it go today?
you and your little girl are in my thoughts xoxo
Registered User
hey hun
hope your alright? how did it go today?
you and your little girl are in my thoughts xoxo
Registered User
For once we went to a doctors appointment and had relatively good news. Although we still have all the same issues, early onset growth deficiency and compromised blood flow issues, everything appears to be stable so bubs gets to stay put for a few more weeks.
The only gripe I have, and I know its not the doctors fault, is they cant tell me anything. Almost all of the answers to my questions yesterday were we dont know. They dont know when the compromised blood flow will become a problem (although they did say it was doubtful I would get to term), they dont know exactly whats causing all these issues, they cant rule out the possibility of other problems with the baby, they still cant diagnose with any accuracy the heart issues till 32 weeks.
It scares me that they want me to meet with the neonatal specialist soon, so the can discuss and prepare me for all the issues that might come with having my little girl early, growth restricted and with heart complications. I know it doesn't help to be in complete denial, but I dont want to think to far ahead either. I'm happy just living in the moment.
And my last but least important complaint, I'm getting a little sick of all the scans and appointments. They want me to go to three seperate appointments next week. I know its important and I know I should just suck it up but I'm starting to hate going.
I should be over the moon that things are stable and bubs is doing as well as she is at the moment but Im just feeling very over the entire situation.
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Sezza, that sounds a bit more positive with bubs being able to stay put for a while yet! Excellent news.
Can they give you anything on what complications with her heart? We had a very accurate diagnosis at 21 weeks. I assume you are going to a large public hospital - they are the best for this after all.
Dont feel bad about not wanting to be traipsing in and out of hospt every second day! Fair enough I think. Its not what we imagine being pregnant will be like is it?
They can usually only tell 20% of the time what has caused childhood heart disease. The other preg complications would be unrelated to the babies heart condition. Like mine it might just be how you do pregnancy. I am preg again with a 50/50 chance of the same preg complications, regardless of if this bub has heart disease or not.
We met with our head of NICU a few of weeks after diagnosis. Mind you I had been in hospt already with threatened pre-term labor at 24 weeks so we knew there was a good chance he was soming early. So diagnosis at 20 weeks, preterm labor and preg complications at 24 weeks and tour of NICU and meeting with NICU head around 27 weeks when I was back in for another round of pre-term labor.
Its a lot to take in. They often have booklets and our hospt (Women's and Children's in Adel) also had a video I could watch in my room while an inpatient. They also had good ones on expressing and feeding prems/sick babies (but that is a whole other story for later down the track).
I think focusing on each day as it comes is a great way to deal with your pregnancy - good plan.
Rachel
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We are being dealt with by the women and childrens at adelaide as well and dont get me wrong they have been great and it isnt their fault that they dont know.
They suspect bubs has an aortic coarctation without valve involvement. Basically the aorta is narrowed after it leaves the heart, which would restrict blood flow to the abdomen and legs. Usually this is associated with some damage to one of the valves in the heart, but luckily for us, they do not think that this is the case with our girl. If at 32 weeks they can confirm aortic coarctation our little girl will need 1 surgery in melbourne to rectify the situation as soon as possible after birth. Most often 1 surgery will fix the problem, very ocassionally they need to go back in after a few years just to stretch it a bit more. If there is valve involvement this is more of an issue and could require multple surgeries to keep the valve working until 18 years of age when an artifical valve can be used to replace the damaged one.
They also mentioned that surgery could be delayed for a few weeks, up to about 4, if they really need to. Ie if bubs does make an early appearance and is to weak/small for surgery.
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That makes sense. WCH and RCH are fantastic! We see Gavin at WCH and have had him since our scan at 20 weeks. I go in for appts there with my son still and will be having my scan with Gavin in two weeks to see if this bub has heart disease too (). He is an amazing man who has saved my sons life - not only by his management of his care but he also resuscitated him once. I cant speak highly enough of him. I dont know if you are going private or public but see if you can get him to care for you and bubs. Tell him Roman's mum sent you! Check out the photo board in WCH cardiology waiting room - look for a photo of my boy Roman! My boy was on pg 38 of the Advertiser this Tue just gone if you want to see how well he looks now - after many trips to RCH and a very complicated set of heart abnormalies (six in total).
Our boy was early and too small for surgery - we managed to wait for 5 weeks in NICU before he became too sick and was airlifted to RCH.
Ross Haslam is the head of NICU and a very skilled and dedicated man, he is recognized across Aust as a leader in NICU medicine and care and a very sweet man.
Make sure you spend some time talking with Wendy Duncan (cardiac nurse) too. She if invaluable. She can help you with coping with all this as well as being a very skilled and experienced nurse who can explain things better than the Dr's a lot of the time. She will also be able to help prepare you for Melb. Ask Wendy for the book we just launched in Jan "No such thing as a silly question". If she doesnt have any left I have one more copy that I can leave at WCH for you. It is designed to help you find your way through this.
Appologies if I am bombarding you with suggestions. I am an "old hand" now and would love to help you if you want it. If you want to catch up for a coffee in WCH one day let me know.
Rachel
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Sezza, we were spoken to about that as well. Rommy had a two vessel umbilical cord (one artery) as well, and the growth restriction, and a very small and deteriorating placenta. He also had reversal of flow along the umbilical cord which really affected his growth later in the pregnancy - even with the pre-term labour we made it to 36 weeks!
We had an amnio with Rom as well but of course didnt test for the chrom issue that the cardiologist were worried about as we didnt find out about his heart until 20 weeks. Had to wait until birth to see if it was there. From memory there was a stronger correlation between boys-heart-chromosomes issues than for girls-heart-chromosomes.
Roman is fine chromosomally and has no brain impairment at all. He is bright and learning well now.
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Sezza just wanted to send you a
Sara
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Thankyou. You cant possibly understand how much it helps knowing that you have been through a similar thing (probably even worse), and that your little boy is doing so well. The reversal of flow along the umbilical cord, brain sparing and worsing of the growth restriction are the major things they are watching out for with bubs. Aparently thats the next step from where we are at the moment, but fingers crossed that things will just continue to be stable and we make it to 36 weeks too.
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The Doctors keep mentioning the possibility that the baby has a syndrome. Some genetic disorders, etc, have been linked to what they see with my baby, early onset growth deficiency, single umbilical artery, placental blood flow issues, extremely low PAPPA when screened at 12 weeks and heart complications. My Amnio came back all clear but there are some rare genetic diseases they cant/dont test for and it is still a possibility they cant rule out.
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