Dealing with bad news

[Rommy'sMummy]

Sezza,

I vividly remember our 3 hour ultrasound and then the 1.5 hour consult after, some is a blur.

I thought you might be thinking about how to deal with tomorrow so here are the things that helped me:

My DH. He was great. He took notes and asked the cardiologist to spell or say again any of the abnormalities again that he didnt understand - and there were four major ones detected at 20 weeks.

I also had the cardiologist draw a picture of our sons heart and compare that with a "normal" heart. I am more of a visual person so that helped for me.

Also we got the name of the cardiac nurse who liaises with patients and we saw her (and our cardiologist) a few times before the birth just to go over a couple of things again.

We had follow up scan at 30 weeks to confirm the diagnosis and lots of other scans due to his size.

The notes my DH took really helped me as I didnt hear much after the prognosis. It was all a bit of a blur from that point on for me, my DH was able to keep going with the conversation though.

You are in my thoughts and prayers, as is your precious little girl.

Good luck tomorrow.

Rachel

[Jellyfish]

wishing you all the best for tomorrow

[Rommy'sMummy]

Hope it went as well as it could for you today Sezza and that you got some answers.

[mummy2chloe]

hey hun

hope your alright? how did it go today?

you and your little girl are in my thoughts xoxo

[sezza]

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.

[Rommy'sMummy]

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

[sezza]

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.

[sezza]

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.

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.