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Feeling very overwhelmed


Disydo

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Hi all,


I used to be on EB as Disydo2018. I'm posting because I'm feeling overwhelmed and need someone to talk to. I'm currently 29 weeks pregnant with my second child (a girl, due in May). We've had a rough past two months.


At the 21 week scan anomalies were detected with baby's heart and kidney. This started off a number of different scans and tests and a lot of waiting. An amnio showed no chromosomal issues (huge relief) but we found out from the specialist scans that baby has a duplex kidney (which apparently isn't really a big deal) and a hole in the heart that will probably need surgery, either at birth, or a few months after birth.


I was finally coming to terms with that last week, and feeling more positive, but we had our first growth scan this week and we've found that baby is very small so the obstetrician needs to rule out IUGR. My first baby developed IUGR but not until 38 weeks. I will be having fortnightly growth scans.


Apparently the growth is not connected to the heart but a premature baby would make the heart issues more difficult.


I don't think I have a question. I'm just feeling very overwhelmed and finding it hard to focus on anything. Any advice or other words would be very much appreciated.


TIA

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I haven’t been through this but did have a twin pregnancy and all the extra scans etc that come with that. One day at a time. Each day is a day closer to your due date. Fingers crossed everything works out for you

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I’m so sorry you’re experiencing this. The best thing you can do for your baby is take care of yourself, try to reduce the stress around you and try to find enjoyment in anything you can in your life. I can’t even begin to think of the mental toll this must be taking on you... please feel free to keep posting if it helps, we’re listening!

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I’m so sorry you’re going through this. It must be tremendously difficult.


I wonder if you can talk to the Paediatric Cardio drs at your hospital. Would it help to know more about the surgery? It is such a hard thing when you can’t enjoy your pregnancy. I hope little one can stay the distance.

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ClaudiaCosette

Hugs for you, [mention]Disydo[/mention].


My last pregnancy was very difficult and complicated and my twins were born premature. One of them had IUGR (among other issues, including severe lung problems - which have thankfully now resolved). Once she was born the doctors kept a very close eye on her growth and she saw a dietician for about 6 months - which meant things like giving her double strength formula and starting solids early.


Since then (she's nearly 3 now) she has always been on the tiny side, but she's tracking along well. IUGR is something that can be treated, but I understand that in the face of other issues it can be extra frightening.


It is a scary time and it's okay to feel scared and overwhelmed. I was terrified. I tried to keep positive but of course I was worried. I definitely did not enjoy my pregnancy, but now that they've come as far as they have, it's starting to feel like a more distant memory and something that I will never forget, but I can slowly replace the memories of it with happier ones of my kids as they grow.

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Thanks so much for the lovely replies, everyone, I really appreciate them.


The good news is that baby appears to be doing well - she moves all the time, she has lots of fluid, blood through the cord is good, etc. So I think I need to try to hold on to that.


My first baby is only 16 months old so I'm also feeling quite tired looking after him while worrying about the pregnancy - but I guess that is also a distraction.


Thanks for the suggestion to talk to the cardio people about the surgery. I've been able to get a huge amount of info from the cardiologist and the OB, and will also be meeting with a paediatrician. It definitely helps me to know as much as possible. Unfortunately there are a lot of unknowns because a lot depends on how everything develops in the next few weeks. And then apparently some babies with this condition develop symptoms and require surgery and some don't. So I think even post-birth it'll still be a bit up in the air (unless things get worse).


Writing that out makes me realise I need to try to enjoy the baby, both in pregnancy and after birth. I have to try to focus on that, but it's hard. I hate not knowing things.


Thanks again for the support and for reading my rather rambling message.


And I'm very sorry to hear what others have been through - it's so stressful and I wouldn't wish it on anyone.

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I'm sorry you are having a tough time with this pg OP, sending you hugs. What I found helped as I stressed my through pg was to keep posting on eb, the support is irreplaceable. Wishing you and your bub all the best.

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Blueskies12

That is completely understandable about feeling overwhelmed. Is there a chance you can ask for emotional support at your next appointment? You do have a lot on your plate. Big hugs.

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That sounds really overwhelming. My DD has a duplex kidney. It basically just means an extra one or part one. I think you are slightly more at risk of getting UTI’s (because there is an extra one so more chances) but we only found out she had one when she had a kidney ultrasound - due to lots of UTIs. It really has not been a problem. I think 1% of the population has one, we were told.


Heart surgery in a newborn sounds so scary. But at the same time, surgeons know what they are doing. My friend has a premmy baby with lots of issues. She now has a 12 year old with no issues. So wish she had a crystal ball to know everything was going to turn out just fine when she was caught up with so much worry over her child’s health.

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Sancti-claws

Based on my sister's experiences when her son was diagnosed with multiple VSDs, I second the touching base with HeartKids - they were a great support.


Oh, and good luck :D

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ineedmorecoffee

DD was IUGR and born at 33 weeks due to me developing pre eclampsia, she only weighed 1 kilo. She was in the NICU for 5 weeks and was fed through a nasal tube.

The hardest days of my life but we hung in there and she is now a perfectly healthy 9 yr old and 95 percentile for both weight & height.


I hope things go smoothly for you and bub, just take it one day at a time.

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It’s completely normal to feel very overwhelmed. Definitely get in touch with HeartKids. They’re a great support.

I’m very thankful that my daughter is alive due to successful heart surgery at 3 months.

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Sending you lots and lots of 🤗🤗🤗. Like PPs have said it is totally understandable you are feeling overwhelmed.


You are amazing for reaching out to get more information so you feel more informed. And we are always here to listen. You will have days when you feel better than others about the situation- try to roll with it as much as you can and don’t stress if you get stressed. Nothing stresses me more than people telling me to relax!

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ClaudiaCosette

I was thinking more about you and your baby overnight, and wanted to suggest organising some practical support before she is born. If she does end up being premmie and needing an extended stay in NICU, you would need someone looking after your DS (in my case, I'd already had to stay in hospital before my twins were born and my DH used up all his leave staying home with our other kids, so once the twins were born he had to go back to work and I was juggling to organise baby-sitters). So that may be something you need to consider.


We had lots of people cooking for us and some organised meal deliveries too, which was amazing. It was one less thing to worry about and so easy for me to grab a meal on my way out the door to the hospital every morning.


It might not hurt to also get ready for having to express for your bub - to have a pump, bottles, steriliser etc in case you need it.


And I also wanted to share that I had post-natal depression with my twins (which I hadn't with my older kids) and also PTSD to some extent. Not saying it will happen for you, but just to be aware that with potentially a sick baby, it might be good to have some support lined up and available if you do need help.


I hope you don't mind my mentioning these things, but I know it would have helped me immensely to be more prepared.

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lazycritter

I just wanted to send you some hugs and say that the skill these days of doctors in the Children's hospitals is really amazing.


One of my cousins was born with a hole in his heart and he had surgery about 5 days old at royal children's in Melbourne. It's hard to take in at the time, we went to see him in hospital with the stitches down his torso but 18 years later, he's 6 ft something, got through school with flying colours, plays local footy. He has had to have his stent changed a few times as he's grown, but all good. And that was nearly 20 years ago.

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Thanks so much everyone for all the support and for sharing stories. [mention]TeaCat[/mention] thanks so much for the practical advice and for sharing your story - I'm very sorry that you had such a hard time. DH doesn't get any paternity leave from work :rage: so he will be relying on the 2 weeks gov leave and annual leave. We do have grandparents who help out but sounds like we might need more help than that if it comes to it. Good to have it in the back of our minds, thank you.


[mention]Prancer[/mention] Thanks for sharing about your DD's kidney. That sounds very similar to what we've been told.


[mention]lazycritter[/mention] thanks for the story about your cousin. We're also based in Melbourne and the baby would go to the children's if needed and I have a lot of faith in them. It's amazing what they can do. I do find the idea of the scar quite confronting though.


Sorry for not replying to everyone individually - please know that I really appreciate all of the stories and words of support.


Oh, and yes, someone else mentioned Heart kids - they look like a really helpful organisation.

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Kiwi Bicycle

If it helps, scarring in babies often becomes very hard to see when they get older. My DS had hernia surgery at 3 months old and I cannot see his scar now he's 7 years old.

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If it helps, scarring in babies often becomes very hard to see when they get older. My DS had hernia surgery at 3 months old and I cannot see his scar now he's 7 years old.

 

That does help, thank you

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Hi all, just an update - I'm 30 weeks and I had a growth scan today. Baby is 3rd percentile and probably growth restricted as she really shouldn't be that small. But she is happy and there is good blow flow to the brain etc, so that's very good. As well as having the fortnightly growth scans I may also start having a scan every other week to check that the blood flow is still good and that baby is coping. The doctor said that the baby is happy but we have to keep a close eye on her. Good news though, the kidney might actually be fixing itself, so that's good.

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Hi,

Only just read your post.

My daughter is also a complex heart kid. It’s very scary knowing, or rather not knowing what might happen. The doctors couldn’t tell us ahead of time how she’d go.

We were fortunate that she was fine initially and got discharged home. But was admitted to hospital at 5 weeks old in heart failure. I don’t think I processed those words for the first few days- heart failure isn’t something that you associate with children!


I’m glad someone has mentioned heart kids - they have support people in the hospitals (I think the Melbourne people have just recently gone back to being in the hospital). They have meals available, can liaise with social workers etc and they also do heart beads (bravery beads for everything our kids go through).

There are two FB heartkids groups that I’m aware of here in Australia and both are very supportive.


Once you know a little more about what’s ahead of you, make sure you check in with the hospital social workers. They can help talk through options - childcare assistance, hospital visitations, helping sort out accommodation if required, pump hire etc.


I was able to buy a book written by a heartkid called ‘Heart of Gold’ by Alexandra Worth. I found it was a great read for my older child (2.5 at the time).


I also found writing in a notebook helped me - I’d write the questions I had, the conversations I had with the nurses, the milestones my daughter reached etc.


But the other things were the practical supports - can someone help out doing the washing at home, provide frozen meals, take your older child to the park etc.


We were at QCH, the team there was fantastic and they understood that it’s a very confronting, confusing time. You will be bub’s advocate, so if you don’t understand something, keep asking questions. I found the nurses were generally better at ‘dumbing down’ the medical jargon!


If surgery does happen, take it one day at a time, one hour, one moment at a time. Those first days were horrible, but now I’d never know hat my daughter had four trips to PICU and a MET call (emergency).


Sending hugs your way. Hope to ‘meet’ you in the heartkid pages. We’re a friendly bunch!

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Good blood flow is good news. I had an iugr baby and they delivered as soon as blood flow dopplers indicated that things weren’t going well.

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Hi,

Only just read your post.

My daughter is also a complex heart kid. It’s very scary knowing, or rather not knowing what might happen. The doctors couldn’t tell us ahead of time how she’d go.

We were fortunate that she was fine initially and got discharged home. But was admitted to hospital at 5 weeks old in heart failure. I don’t think I processed those words for the first few days- heart failure isn’t something that you associate with children!


I’m glad someone has mentioned heart kids - they have support people in the hospitals (I think the Melbourne people have just recently gone back to being in the hospital). They have meals available, can liaise with social workers etc and they also do heart beads (bravery beads for everything our kids go through).

There are two FB heartkids groups that I’m aware of here in Australia and both are very supportive.


Once you know a little more about what’s ahead of you, make sure you check in with the hospital social workers. They can help talk through options - childcare assistance, hospital visitations, helping sort out accommodation if required, pump hire etc.


I was able to buy a book written by a heartkid called ‘Heart of Gold’ by Alexandra Worth. I found it was a great read for my older child (2.5 at the time).


I also found writing in a notebook helped me - I’d write the questions I had, the conversations I had with the nurses, the milestones my daughter reached etc.


But the other things were the practical supports - can someone help out doing the washing at home, provide frozen meals, take your older child to the park etc.


We were at QCH, the team there was fantastic and they understood that it’s a very confronting, confusing time. You will be bub’s advocate, so if you don’t understand something, keep asking questions. I found the nurses were generally better at ‘dumbing down’ the medical jargon!


If surgery does happen, take it one day at a time, one hour, one moment at a time. Those first days were horrible, but now I’d never know hat my daughter had four trips to PICU and a MET call (emergency).


Sending hugs your way. Hope to ‘meet’ you in the heartkid pages. We’re a friendly bunch!

 

Thanks so much for sharing your story, Gabbitz, that sounds so scary. I'm so glad that your baby is doing so well now.


I didn't know there were hospital social workers, that's really helpful, thank you. Thanks also for telling me about the heartkids people in hospitals and on FB, that's great to know.


I'm trying to understand everything as much as possible and to ask lots of questions. I often find medical things a bit confusing but the doctors have been really good at explaining things. We feel very well taken care of.


I'll also look up that book. Thanks again for your post, really appreciate it.

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Good blood flow is good news. I had an iugr baby and they delivered as soon as blood flow dopplers indicated that things weren’t going well.

 

Thank you for sharing. Do you mind me asking how often they were monitoring the blood flow? I think I'll be going in weekly.

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Good blood flow is good news. I had an iugr baby and they delivered as soon as blood flow dopplers indicated that things weren’t going well.

 

Thank you for sharing. Do you mind me asking how often they were monitoring the blood flow? I think I'll be going in weekly.

 

With DD it was fortnightly; I had a poor result on the Friday afternoon and she was delivered first thing Tuesday morning.


DS wasn’t iugr but was monitored due to history and his scans were every four weeks. I imagine if there had been signs of iugr then they would have been more frequent.

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