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Gabbitz

Congenital Heart Failure - 7 week old in hospital

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Gabbitz

I’ve just had my DD in May. 

She was born term (just - 37 weeks) but with a whole list of heart issues. She started off breastfeeding well and was good to go home as all her heart defects were balancing each other out. 

We had a check with her cardiologist at 6 weeks and she was admitted to hospital for observation from the outpatient clinic. We’ve now been in hospital for 2 weeks. They’ve put her on diuretics 3xDay and is being monitored in the cardiac ward in Qld Children’s hospital.

they are recommending surgery to fix the large VSD and it will happen soon (we think). With her other conditions (ccTGA + some other valve formation issues) the doctors are currently a bit wait and see. I’m pretty scared about what the surgery will entail. It just seems so extreme for such a tiny bub, but I know it will be necessary. 

Anyone else have experience with heart stuff (or ccTGA - As this particular condition is really rare), or experiences at QCH that can tell me of services or good stuff around the hospital (good food, where to find the laundry etc,)

Any support services working in the COVID climate? HeartKids isn’t available at the moment.

any pick me up advice? I’m feeling pretty raw and down at the moment. It feels like she’s going downhill at the moment, so I’m glad we’re still in hospital for monitoring, but it’s so scary too  

Thanks heaps 

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SplashingRainbows

I’m not Qld based OP so I’m no practical help but I couldn’t read and not send you the biggest hugs. 
 

In my less life threatening experiences with kids, the doctors have always been very cautious with little ones having surgery. I am sure you will be in good hands even though it is a scary prospect. 

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Gabbitz

Thank you. 

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Lallalla

Oh man that is hard! We did not have a heart baby but we did spend a lot of time in hospital for one of our girls lungs as a baby. 
 

Is the Ronald McDonald room open? I found the ladies that volunteered in the Canberra version helpful and it was a good place to go for a tea and a breather 

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DQMission

My mum was a heart baby. She was lucky enough to avoid surgery until she was a child, but it was still well over 6 months in hospital and having to learn to walk etc again. Back then I dont think Heart Kids was a thing, but the Heart Foundation supported mum's parents. Are they worth contacting to ask if they can point you in the right direction?

I am so sorry that your little family is facing this. Both of mine have been in and out of hospital their whole lives due to medical conditions with one of mine very sick as a newborn. I can imagine that you are exhausted and beyond stressed. Self care as a parent is counter-intuitive but very important.

I hope you find some support but in the meantime, EB has a wealth of experience and compassion and I hope you also find some comfort here.

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Soontobegran

I am really sorry Gabbitz. Our eldest daughter had heart failure at 3 weeks of age and her deterioration from her condition at birth and when she was finally admitted to hospital was hard to see. Hers was not a congenital condition but an infection of her myocardium but the symptoms and the treatment other than surgery were the same as your little one's.

Your little one will get better I am certain, she is in a wonderful hospital with wonderful paediatric cardiologists and surgeons and babies are generally just super resilient but the interim and post op time will be gruelling for you. 

Lean on people close to you if possible, people will understand but they will not understand the complicated emotions unless they have been through similar.

Heart Kids are the best....they will be a wonderful support for you. Wishing your little one all the best and please keep us updated.

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Moukmouk

Have you called heartkids? They say their helpline is operating and their Facebook page seems active. There is also a private heartkids parents Facebook group that is meant to be good. Definitely reach out online - the heart parents are a great group. The hospital social workers might be able to help as well. I’m not in Qld, but the children’s hospital there is better than world class. I often see older heart kids, and the outcomes over the past twenty years or so are simply amazing. 

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.Jerry.

Hi. 

Sorry to hear about your daughter's heart issues. 

I am in Brisbane and am happy to help in any way I can.  If you need anything dropped up to hospital or laundry done, happy to be of assistance.  

My daughter was born at the Mater Hospital 14 years ago and was very premature, so I know what it is like to be stuck in hospital for ages (DD did 12 weeks in the mater ICU).  I don't know the new children's hospital well though.   It's hard living at the hospital by your child's bed.

My daughter was born with a heart condition, but mild enough not to need surgery.  DD was born with an Atrial Septal defect and pulmonary valve stenosis.  Saw a cardiologist for a few years, but ok now (except for GPs that hear her murmur and mildly freak out).

One of our friends' daughter has multiple complex heart conditions and cared for at QCH.  She has undergone heaps of surgeries and is doing okay now at 11 years old.

Hope all goes well.  As I said, happy to drop off a care package for you. :)

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Redchick2

No advice but sending you :bighug:

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MooGuru

I have 2 friends who are frequent flyers at QCH. One has had dozens of surgeries there for an extremely rare condition. They're both doing really well all things considered. 

Is there a Ronald McDonald room? (One hospital we were at short term had one). It had showers, laundry and kitchen. The social workers should be able to give you some advice around that sort of stuff. With HeartKids they might be available online/over the phone? Someone I know gets support from them and shared something recently on FB from them.

It's really scary. It's ok to be scared.

One thing that helped me was becoming an active participant/advocate. In the beginning I felt like I was being talked at/my voice was unimportant, that asking questions was wasting everyone's time. I felt overwhelmed and completely out of my depth. It was an OT saying "you know him best" and reading about different parent doctor relationships that triggered the change for me. Having a voice, making connections with nurses and doctors etc really improved my experience.

I hope everything goes well. The outcomes for heartkids these days are amazing.

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Gabbitz

Thank you so much everyone.

Its been a tough morning. My daughter has been put onto oxygen and is about to be transferred to ICU. They have officially classed her condition now as heart failure. I kind of knew that, but actually hearing them say that freaked me out a bit. (OK, actually freaked me out a lot!) I just feel so helpless at the moment and very teary. 

Food at the moment is provided by the hospital as I’m breastfeeding or at least expressing milk for DD. She’s been put on continuous feeds through an NG tube. I’m working hard to keep my milk supply up. They want to get her to gain weight before any surgery occurs, so they’re also adding formula to her feeds to add more calories.

Thanks for the offer of assistance Jerry. At the moment I’ve got stuff available, and I’m washing stuff in the bathroom to keep a supply of clean clothes going. I will keep your offer in mind, although with Covid restrictions at the hospital it makes things that little bit more complex/frustrating etc!

I will see if I can get in touch with some of the support groups. With the restrictions at the moment, it’s a pretty lonely experience.

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IamOzgirl

Oh Gabz

I'm so sorry.

Happy to help in anyway I can. even a simple thing like give you access to my Kindle to read? (If you even can find the time)

One other thing - how is your supply? Maybe some boobie bikkies? 

 

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Gabbitz

Having been through the expressing route with my DS - an ex 32 weeker, I went straight for the medication option. I never found the boobie biscuits helped. The medication (domperidone) works well for me. 

But I guess I just need a place to vent a bit, knowing that other ladies have been through their own dramas and can provide some timely encouragement.

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DQMission

That sounds incredibly scary. Wishing your beautiful baby and your family all the very best. Xxx

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MooGuru

Hope the ICU move goes well. I hope you get better news soon and she starts gaining some weight.

Expressing in ICU is hard. You have my sympathy. There was no breastfeeding support available at the kids hospital we were at but if you need any help with expressing you might be able to get help over the phone from the nearest women's hospital or maternity unit.  Great that you already know something that works for you with the medication.

Please keep posting if it helps you. 

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Freddie'sMum

I just wanted to send you an internet hug OP.  I hope your DD gains weight and everything turns out for the best.  

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little lion

Do you live in Brisbane, Gabbitz? If you have older kids, sometimes siblings they can attend the Starlight Room. Please ask your child’s nurse to get you a social worker to speak to. Social workers are amazing connectors and problem solvers. 
 

I haven’t had much to do with the cardiac ward but it is a fantastic hospital (I used to work there). wishing you and your baby the very best. 

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tinselfoil hat

@Gabbitz I’m so sorry, that sounds so heartbreaking for you all. Wishing your little one all the health in the world!

 

I don’t have any helpful advice but I hope this makes you smile. A friend who is my age (early 30’s) had a serious heart condition as a newborn baby. He had surgery and it was considered (in the context of the 80’s) a miracle he survived. He had no lasting issues whatsoever. Even though he obviously couldn’t remember the experience, it changed him profoundly. He always did what he could for others, at any opportunity because he said he life was saved for a reason. It’s funny that such positivity can come from such a dark and scary time but I hope it is this way for your family too. 

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IamOzgirl
Posted (edited)
1 hour ago, Gabbitz said:

Having been through the expressing route with my DS - an ex 32 weeker, I went straight for the medication option. I never found the boobie biscuits helped. The medication (domperidone) works well for me. 

But I guess I just need a place to vent a bit, knowing that other ladies have been through their own dramas and can provide some timely encouragement.

I hear you! it would be Straight to drugs for me too 🙂

It was the only thing I could think of to help! 

I'm here if you need to chat too. PM any time. 

Edited by IamOzgirl

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Mumsyto2

I don’t know about Brisbane kids, but did have one in neonatal intensive care at children’s hospital in Sydney for several months. They were there for several months from birth and had several operations during that time. The hospital had a parents dorm within the hospital for parents of babies in intensive care (either neonatal or general), the idea being parents could be accessible for breastfeeding as there is no parent bed beside the baby in intensive care units unlike general wards. It wasn’t strictly limited to parents who were breastfeeding but that was the general idea. The arrangement for this was directly via intensive care staff. Not sure if Brisbane has similar?

Then is also a Ronald McDonald house adjoining the hospital where others stayed who were not suitable for the dorm in the hospital. Not sure if arrangements for this were via intensive care, wards or social worker.
 

Failing that, there was short term flexible apartments a short walk that are for use with the hospital. I know people such as grandparents and the other parent bringing siblings from country areas for a weekend or so would use them. I recall arrangements for these were via the social worker. 
 

Getting hold of a hospital social worker should be a priority. They can hook you into many things. Not sure if you have other kids or not but if long term they may assign a ward granny to sit with baby on certain days to allow you time at home to spend with your other kids. I found that invaluable. 
 

In short it is a pretty sh*te time, at the core nothing will change this but get all the help you can to make it logistically easier at least. 


 

 

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Wonderstruck

No experience this myself but I would outsource and call support from where you can (I imagine harder in Covid).

One of the ladies in my mothers group had her second/third - twins at something like 28 weeks. We all threw in some money and a friend and I made a care package with a meal delivery service voucher, duffle bag with toiletries, snacks, self care items and some quiet toys for her 2 year old. If someone could put something together of essentials it might help. 

 

Sending hugs and support. 

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Gabbitz

Thanks IamOzGirl. I appreciate the thought - with my first I hadn’t ever even heard of boobie biscuits! At least I know the meds worked for me.

I’m trying to organise somewhere to sleep at the moment! It seems to be a bit confusing how to access it. I think it being Sunday perhaps makes things harder. 

Then I have no idea what to do about food in here. I might have to fend for myself. I have no idea. 

Thanks for the suggestions everyone. Yes there is a Ronald McDonald room. I just don know how to get access to it yet or if there is room for me. Some people are telling me I can sleep in DD’s room, others are saying I can’t. This could be a challenging evening. 

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.Jerry.

In the general wards you can sleep in the room for sure.  Not sure about ICU.

Have you asked to see a social worker yet?  They might be able to get one to you tomorrow morning, once the week gets underway.

When DD was in NICU I found it good to go for a short walk down to Southbank to get some fresh air and food, though I know NICU is different from ICU.  My daughter was NG tube fed with EBM, so no need to be on hand to feed if urgent.  I took a 45 minute break and went for a walk for food.  Easy 10 mins stroll down there if it is possible for you.

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Gabbitz

Thanks Jerry,

i might have to, just to get a break from the mayhem. There seems to be one nurse for each room, 1 child per room. Then I just need to decide whether I can separate from DD to go for a walk! 

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Sancti-claws
Posted (edited)

So sorry you are going through this with your beautiful new baby, Gabbitz.

My sister's son had multiple VSDs operated on when the Heart stuff was all that the Prince Charles, and he recently celebrate his 18th birthday.

He wasn't diagnosed straight away - when they finally connected the dots, he was 9.5 weeks and in heart failure.  Heart Kids was a godsend for my sister.

If you are from outside Brisbane, there is a lady who does amazing work helping help with families from out of town in accessing care packages, transport, information on the PTSS etc - look up "Breaking Down the Barriers - Rural Patients in City Hospitals Brisbane" for her facebook page?

Edited by Sancti-claws
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