Support

[windswept]

Hi All

I am mummy to a very lovely little boy. A very healthy and enthusiastic, sociable and wonderful little boy... Who happens to have some pretty major issues with his heart. Issues which need fixed very soon - by way of open heart surgery.

I've always thought that I was going to be able to be by his side 24 hours a day during the hospital stay, but have just been told I will have to find alternative accommodation while he's in intensive care and high dependency. I don't know what I am going to do - he's 7 months old and I've never been apart from him for more than a couple of hours. I can't imagine leaving him behind in hospital to go to a hotel room.

So, I am hoping to build up a few friends on here who can help distract me while we are in hospital.

Anyone else out there with a child with congenital heart defects - or who has had surgery?

Cx

 

[sun]

Hello and Welcome! I don't have any experience with heart issues, but I can offer lots of hugs and help with the distraction you're looking for! Sending lots of positive wishes for a smooth and successful operation for your little boy xxx

 

[flossyboo]

oh that sounds awful is there not a parents room you can stay in so at least you can be in the hospital??x

 

[windswept]

Apparently not... I can maybe stay in accommodation within the hospital grounds, but can't book ahead so no guarantees...

 

[going_crazy]

Hey! I think I've spoken to you before on here? I'm also a heart mummy. My LO is now almost 16months old and had 2 surgeries at birth and 3 weeks ago she had her Rastelli (open heart surgery). Any questions you have I can try and help? My daughter is Tof-type, but she also had TGA, DORV, critical subpulmonary stenosis and unique positioning of her aorta.

With regards accomodation, which hospital will you be at? Most hospitals have accomodation, and, although it cannot be booked in advance, most of the time priority is given to parents of children who are in intensive care and/or following surgery.

Here to help you with anything else - even if you need to have a rant!

 

[windswept]

Going_Crazy - so glad you posted! How is your girl now? What is her outlook? You must've been through hell when she had to go for surgery at birth. Is your story anywhere?

Well, I just don't know what to expect. I got my heart children book through, and it goes into a lot of detail about intensive care, etc - which is really useful. But i am so nervous about his recovery afterwards... How long were you in hospital? And is your daughter doing okay now?

I think the worst thing for me just now is that when I look at my little darling, he is perfectly healthy - I can't see any reason for him to go through the operation - he has no symptoms whatsoever.

As for accommodation, I think you are right, but I don't like the risk of not being there... It's Yorkhill we'll be going to. Surely we'll also have priority as we live so far away too?

Still waiting for the phone call - had it in my head it would be this week, but nothing. Waiting is so hard.

It's good to hear from another heart mummy. Are there any more around here? Any threads of interest?

Cx

 

[going_crazy]

Hey!
Here is a link to my birth story: https://www.babyandbump.com/birth-s...3270-my-birth-story-hectic-first-3-weeks.html If you skip straight to the spoiler, that's where the info is on what happened when she was born!

Before surgery this time, I felt the same as you, I couldn't bare the thought of handing over my 'healthy' baby for a massive and complex surgery. But, without the surgery she wouldn't have the energy she has now. To be honest, everyone was amazed at her recovery. She had her op on weds 11th Jan, spent 2 days on PICU, 2 days on the ward and was home on the Sunday night! We've got her follow up appointment next Thurs so will know how successful the surgery has been then. She had a conduit put in to replace her pulmonary valve, and this will not grow with her, so will need to be replaced as she grows up and she will need cardiac care for life, but her consultant is fairly optimistic that she will lead a good life

Here on Bnb, I've 'met' Ozzieshunni whose son was born with heart block, and Siryen whose daughter has Absent Pumlonary Valve (if I remember rightly!), and there's also Aidedhoney whose son was born with Truncus Arteriosus (found this old thread of hers: https://www.babyandbump.com/parenting-journals/175820-alex-his-major-heart-surgery-new-pics-pg6.html) There are a few others I've seen whose babies have been born with vsd's, but can't remember their names!

I'm also on the Heartline Forum (https://www.heartline.org.uk/forums/index.php) Over there, you will find lots of mummies who have 'been there' and also lots that are going through surgeries now. There is so much support and you will be able to find out more info about Yorkhill - accommodation etc and there a several mummies on there who have children/babies with Tof. If you do sign up over there, I'm Sarahbo, and Aidedhoney is Alexs_mum.

Anyway, I'm rambling now.... Will be thinking of you while you wait for a date (that is one of the hardest parts!). Anything else I can help you with, just give me a shout!

Sarah xxx

 

[windswept]

Going_crazy - thank you so much for taking the time to reply and to share all your information and interesting threads... It means a lot!

I'm so glad to hear how well your girl is doing, but also very sorry to hear of all the heartache you've all had until now (and more surgery in future). Sounds like she did really well and got home really quickly - it gives me hope for us!

So, is Maddison able to get on as normal now? Is she restricted in what she can do as she recovers, or was she fully recovered by the time she got home? One thing Archie loves is our weekly trip to the hydrotherapy pool (which is as warm as a bath, so mummy loves it too!) and I'd love to get him back into that quickly after. Also, we are hoping to take him on holiday in April before daddy's work gets busy and mummy has to go work Not sure about flying afterwards - or if he's going to be up for travelling and being out of a routine (which has never phased him before).

He's not the best of sleepers, so I am wondering if this is going to affect that - make him sleep more or less... So many questions, that I am sure you cannot answer, and don't expect you to! I need to find out about visiting times during the PICU and high dependency - need to plan my time or I'll end up crumbling! I haven't been apart from him for more than a couple of hours and this is going to be tough.

I hope that once this is all over I can help others like you have already helped me!

Will be praying for you on Thursday!

I called Yorkhill this morning, and our doctor was working on his patient list for next week - so we may be getting a date by the end of the day... Fingers crossed!

Much love, Cx

 

[going_crazy]

When Maddison came home, we weren't able to pick her up under the arms because of the wound (and healing ribs), but we've just gone back to picking her up under the arms. They say it takes between 2-6 weeks for them to heal fully, but every baby/child is different and heals at different times.


Her wound was scabbed all the way down when we left hospital, and that took about a week for the scab to come off - during this time we couldn't give her a 'deep' bath (and no swimming!). We just put enough water in the bath that would cover her legs. Again, we've just gone back to having the water up to her waist as all the scab is off so there's no need to keep it dry. We had the community nurse come out to us for a quick wound check, and they advised that if there is scab, then it should be kept as dry as possible.

We've not flown with Maddison, and have no intention to (at the mo!), so I wouldn't know about that, but the 'standard' follow up appointment is 4-6 weeks, so I would say no flying until he's given the 'all clear'.
2 weeks post op Maddison was back doing the school run with me, although we did find that she got uncomfortable quicker in her car seat and pushchair - this has got better now though, and I feel she is back to normal now.

Maddison had always slept through the night, BUT after surgery she had a good 2 weeks of having terrible nights sleep. There were a few reasons for this - after surgery, most children who have been on by-pass have excess fluids on their lungs, which they need to cough out, but obviously coughing hurt so that took a while, and she would wake up needing to cough and getting upset. She also managed to get a chest infection (their immune systems are low after surgery) so that made her very grumpy/upset too. Plenty of paracetomol and cuddles were needed!
There is light at the end of the tunnel though, as she has now gone back to sleeping through the night!

We're at Evelina in London, so can let you know our visiting times.
PICU: For parents, visiting wasn't restricted, and you can come and go whenever you wanted to, although there is a '2 people per bed' policy. Other visitors were told they could visit between 8am-8pm. We found that the first night after surgery was the best night for us to get some sleep, as Maddison was out of it (they keep them very heavily sedated for at least 12-24hrs). The nurses will always phone you if there is any change.
HDU: Parents again had very open visiting times (although they asked us to be sensible!) and other visitors were 8am-8pm BUT not during lunch time (12-1). We are lucky that the Evelina have a pull down bed next to the cot, so one of us could stay all night, then during the day me and OH would take it in turns to have a shower/get something to eat etc. Make sure each of you go for a little walk to clear your head - you need to look after yourself as well as your little man!

Has your LO had any surgery yet, or have you seen pics of PICU etc? If not, I don't mind sharing some post-op photos with you (if you want to prepare yourself), although I know some don't want to see them!

I really should learn how to shorten my posts I seem to ramble non stop once I start!!

Let me know if you get a date..... Good luck!

Sarah xx

 

[windswept]

None of this is rambles - it is all very, very helpful, so please feel free to write as much as you like!

There's things in there I hadn't thought of - discomfort in the car seat, etc - we will have a full day travelling home, so this is a concern. I guess we'll be kept in longer for that reason, and we go in 2 days before as we will miss the clinic before due to our distance.

Visiting times are helpful too, will call yorkhill with hope they are similar. Mr W has friends in glasgow, but I haven't really, so it will be hard to know what to do with my time... But if I plan it I'll feel better!

Thank you for offering to share your photos. I am quite prepared - the heart children book is fab and I've seen a few online. It's helpful to prepare, but I doubt anything will truelly prepare us for seeing our own Archie lying there We are keeping a journal to show him when he reaches an age where he wants to abuse his body and we can't stop him, so he can make informed choices!

Your story has really helped us, I am so glad your little fighter is back to normal and has a good outlook. I take a lot of comfort from that, and hope you know just how helpful you've been to us.

Thank you!

Cx

 

[Ryders_Mommie]

Hey, I'm Katie. I am 17 and have a 10 month old son who was born with Gastroschisis, his intestine on the outside of his body. He was in the hospital until he was 3 months old and we found out he had more u nderlying problems. he was on a ventlator for the first 2 months of his life. This isn't why I posted though. I was going to tell you that the Rhonald McDonald house is amazing if there is one nearby your hospital. They will work with you on payments and it is only 10 dollars a night. They are amazing. If you need any help at all just let me know. I can always be here to talk.

 

[windswept]

Katie, my goodness, it sounds like you've had a horrible time of it. Hope the outlook is good now?

Thank you for your words of support, and for your recommendation of the Ronald MacDonald house, which our hospital does have. My only worry with it is that we can't book in advance, just hope they can accommodate us when we get there

Best wishes, Cx

 

[angelic000]

Hi all, I have just been reading this thread and just want to say that you are all so amazing the way you have coped with heart surgery (and other surgeries) when your babies are/were so small. I think it is an emotional rollercoaster being a first time Mum with a baby that is fit and healthy - let alone if they have any other conditions that you have to cope with. My son has cystic fibrosis so I dont have any experience of surgery at the moment and hope it stays that way. Other than the bronchoscopy he had at 4 months old and they did have to give him a GA for that which I did find upsetting. He is due another bronchoscopy in a couple of weeks and am dreading the nil by mouth bit as he is 1 now and loves his food - so the though of trying to keep him entertained for 7 hours with no food sounds daunting. Anyway glad to hear all of your LO's are doing ok and I hope the op goes well and you get some accommodation. xx

 

[JASMAK]