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Old Oct 29th, 2015, 14:54 PM   1
Bumblebee2408
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Anyone else with a TOF baby??


My daughter is 4 weeks old and we're still in the NICU after 2 lots of surgery... Countless infections and an hermangioma on her head

Anyone else with a TOF baby in a similar situation or have any past experience.

Also if anyone does what's it been like since leaving... We're not sure what to expect. Surgeons said as she gets bigger she may need more surgery as she grows.

Many Thanks in advance xxx



 
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Old Oct 30th, 2015, 06:17 AM   2
sethsmummy
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im sorry hun i have no experience but wanted to sen you some love



 
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Old Nov 2nd, 2015, 17:41 PM   3
Bumblebee2408
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Thank you. It seems it not to common 😔



 
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Old Nov 10th, 2015, 12:40 PM   4
LaughOutLoud
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Originally Posted by Bumblebee2408 View Post
My daughter is 4 weeks old and we're still in the NICU after 2 lots of surgery... Countless infections and an abscess on her head

Anyone else with a TOF baby in a similar situation or have any past experience.

Also if anyone does what's it been like since leaving... We're not sure what to expect. Surgeons said as she gets bigger she may need more surgery as she grows.

Many Thanks in advance xxx
Hiya,

Im sorry youre having a hard time. My baby was born with a undetected heart defect, TGA. I understand how difficult it is to watch your little baby undergoing big major operations.

My world was turned upside down. Instead of being able to hold her and take her home, she was rushed off to a heart specialist hospita, Glenfield.

I didnt get get to see her for the next 3 days and then didnt even hold her until much later. However, have faith that these babies are truly miracle babies. Heart babies are named warriors for the battle they fight as such tiny people.

I think faith is all i had at that time and trust your baby that things will be ok soon. Sometimes they do take a step back before going completely forward in the correct direction.

We took our baby home after she was a month old and things were different because of the open heart surgery, We had to hold her in a different way but all that the nurses shall speak to you about before you are discharged to go home. You might have medicines you need to give too?

I also found there are groups on facebook where theres adults and children with the same heart defect as my little girl. I joined as it helped me to understand her and her heart more.

Im here if you wish to chat and i wish you and baby all the very best.
Please take care of your self too xx



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Old Nov 11th, 2015, 19:35 PM   5
Bumblebee2408
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Thank you Laughoutloud

You've described exactly how everything s for us right now.... We thought we'd be home soon but now found out our little girl is going to need another op (a dilatation: to widen her oesophagus). She been having these episodes of not breathing and going blue and dropping all her Sat's. Terrifying

We're just waiting for an op date for dilatation hopefully it will be soon with all the new problems occurring with her breathing over the last 24 hours.



 
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Old Nov 12th, 2015, 08:57 AM   6
LaughOutLoud
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Originally Posted by Bumblebee2408 View Post
Thank you Laughoutloud

You've described exactly how everything s for us right now.... We thought we'd be home soon but now found out our little girl is going to need another op (a dilatation: to widen her oesophagus). She been having these episodes of not breathing and going blue and dropping all her Sat's. Terrifying

We're just waiting for an op date for dilatation hopefully it will be soon with all the new problems occurring with her breathing over the last 24 hours.
Hiya,

I'm sorry to hear that baby is waiting for another operation. I know all you want to do is be able to go home and try to have a 'normal' life but its a good thing that the doctors know what she needs now rather than you taking her home and then having to bring her back. She is under the best care and the doctors know what they are doing so in the long run it will be better for her and your family. You will continue to have to be a strong mummy.

Have you been home at all? I can see you have a son already? How old is he? My heart baby was my second, my first DD was 4 when my heart baby was born. There was tremendous guilt leaving her with my parents as she had never been away from me or her dad. I'd told her i was going to be home the next day after having the baby, as her heart issues were undetected until after birth, so leaving her for weeks was difficult. When the baby was out of PICU I started to go home to spend the night with DD1 and freshen up.

The hospital corridors and walls can seem very frightening after a while.

Are there other TOF parents with you? It helps to chat to someone who has/is going through similar.

My heart baby is now 15 months. She isn't 'fixed' as that was the impression I had initially. She has her 'issues' but they haven't worsened so that's a blessing. Heart patients, whether child or adult will always be kept under consultant care for check ups and to make sure things are going the right way.

You will get through this and your baby will go home when its the right time for her. Have faith in whatever you believe in, have faith in our miracle babies. I'm here if you still want to chat.

Keeping you guys in my prayers.xx
Tk cr



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Old Nov 15th, 2015, 18:02 PM   7
Bumblebee2408
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Thanks Laughoutloud.

We should be getting the date for her dilatation next week any day now. It'll just be good to know when her proceedure is.

She's been doing better the last few days and is having less 'blue moments' as the nurses call it.

There's no cure for what she has and over the years she will need more dilatation's as she grows. She will also need to see a dietician and will struggle eating certain foods that are more difficult to swallow. She is a little fighter.... There is one other Baby on our unit (not in the same room) me and her mum chat when we get chance which is good.

Thank you for the support xx



 
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Old Nov 15th, 2015, 18:05 PM   8
Bumblebee2408
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Yes I have a son who is 17 months old who is stopping with grandparents. It's really hard being away from him so much we see him every weekend we go home Friday evenings and come back late Sunday and try our best to do normal things with him.



 
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Old Nov 22nd, 2015, 02:58 AM   9
Mrs G
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Hi
Was just about to post the exact same!! Me, I have a tof baby.
He was born on 16th oct, had constructive surgery on 17th and has since required 3 dilatations. The blue episodes are very scary and at the mo we are only going about a week between dilatations. Got home from hospital yesterday and booked in Friday for next one.

How are things with you? Did lo have dilatation yet? Which hospital are you in? Sorry for rushed post but would love to chat more. Tof does seem quite rare and itd be nice to talk to someone else going thru it.
Xx



 
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Old Nov 22nd, 2015, 13:19 PM   10
Bumblebee2408
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Hi MrsG,

Lovely to meet you. She had 1 dilatation last Monday and had a blue episode the same day where she wouldn't breath for 5 minutes!! They were just about to intubate her when she started coming around. Very Scary.

Since then we've had no blueys. However she is starting to sound more rutally sounding when she's breathing again so we may be due another.

We're still in the NICU as she's only managing 5mls from a bottle between feeds before she starts coughing and choking poor munchkin xx



 
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