Dealing with bad news

[Jaycee]

Sezza, just wanted to give you a big hug and let you know I'm thinking of you and you baby girl.
Please keep us informed as to how she's going.
xxx

[Jennifer13]

Thinking of you and praying that your little one can stay put for another six weeks at least.

We have been watching Child of Our Time on BBC (Foxtel) and one of the (now 9 year old) little girls (of 25 kids being followed) was the only survivor of tiny triplets born at 24 weeks. She was the tiniest of the three and they never expected her to survive, especially not without problems. By 3 years of age she had completely caught up with all of her peers and was advancing ahead of them in many areas. She needs glasses, but is one of the brightest kids on the show and always the happiest. There are always stories that inspire hope.

[Rommy'sMummy]

Sezza - big hugs.

I have been there. My DS was diagnosed at 20 weeks with complex heart conditions. 24 Weeks preterm labor started. Irritable uterus so home on bed rest. 30 weeks brought reversal of flow along umbilical cord and small baby (IUGR). Delivered at 36 weeks (after 12 weeks of contractions!) via non-labor c-section as he was stressed with my contractions and loosing wt. Birth wt 1.6kg (3pd 10oz). Too small for surgery so 5 weeks in NICU before airlifted to Melb.

After many open heart surgeries and issues he is now 4.5 years old and while he still has issues he is a joy.

Please PM me if you want to chat more. Anything I can do to help re chats etc would be my pleasure.

I think the main thing I did to help with the (considerable and very understandable) stress during the pregnancy was focus on what I could do for my baby. That meant relaxation techniques, celebrating each day of pregnancy as a great day for my baby, talking with our babies cardiologist, touring the NICU and getting to know the head of NICU, getting in touch with HeartKids, teaching myself how to knit and crochet and doing baby blankets for my son etc etc.

We also found out the sex through an amnio and so named our boy and started the personalized bonding from there.

Please, Please dont google. Really narrow your searches. What hospt will your baby girl have here surgery? Search their website not random ones. We had to go interstate for our surgery (SA to Vic) and so tried to also get into on where the hospt was, accommodation, shops etc.

Please contact me if you want to chat more or pick my brains.

My thoughts and prayers are with you.

Rachel

[Footsteps]

sezza,
i wanted you to know i was born at 24 weeks hun...and i had a few problems but im fine...not easy but you have got support.
love rach xxxx

[sezza]

Had another ultrasound this morning, not much to report because I don't see the specialist til tomorrow and the ultrasound technician was reluctant to tell me much. But at least I got another good look at bub and we have made it to 25 weeks and counting. Tomorrow I have been told to allow 3 hours for the appointment with the specialist, so I will know more then.

[amy_o]

Will be praying for you tomorrow, Hopefully you can get answers.

[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.

[Rommy'sMummy]

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

[Rommy'sMummy]

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.

[Sara69]

Sezza just wanted to send you a

Sara

[DiannaQ]

Sezza - just wanted to send you a great big Hug - you're doing a great job - hang on tight your precious baby is a fighter