Anyone else with a TOF baby??

[Bumblebee2408]

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

 

[sethsmummy]

im sorry hun i have no experience but wanted to sen you some love

 

[Bumblebee2408]

Thank you. It seems it not to common 😔

 

[LaughOutLoud]

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

 

[Bumblebee2408]

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.

 

[LaughOutLoud]

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

 

[Bumblebee2408]

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

 

[Bumblebee2408]

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.

 

[Mrs G]

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

 

[Bumblebee2408]

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

 

[Mrs G]

Hi
Which hospital are you in? We were in Southampton nicu at princess Anne and then he's been in the general hospital for the dilatations.

The signs I've noticed before he needs dilatation are not burping after a bottle, getting slower at feeding, the rattley sound in the throat (although he gets that after the op too and if they've tried to put an ng tube down) and then the last sign is gasping for breath and the blue episodes, id telly after a feed.

Are they feeding her with a tube as well as bottle? What have they suggested about upping her feeds?

It's such a stressful time isn't it? Especially trying to juggle another lo at home.

Xx

 

[Bumblebee2408]

We're not a million miles away we're at a hospital in Bristol.

She has an TAT tube in for feeds but they allow her to try small anounts to see how shes getting on. She's thrown a scary bluey today and they had to give her oxygen. She's also picked up an infection so she's not even been allowed the 5mls between feeds today.

They have said they won't up her feeds until SALT team are happy. However whenever they've come to assess she's either been poorly so not drinking or she's been asleep so they couldn't see her feed 😞

She does seem to me to need another dilatation as she seems to be struggling more with her breathing, sounding rattly especially after any type of feed and she's coughing when swallowing her own saliva. However no mention from surgeons about this. I'm going to speak to them tomorrow and see what they say.

She's just not herself lately but unsure if that's to do with her infection she's very pale as well.

It is stressful we're very lucky we're able to split our time between Jessica and Jack. We spend weekdays here with her and weekends home with Jack. He's a good boy and we miss him tonnes. We could move him into the funded accommodation we're staying in but there's not many things he can do; or parks etc to take him to and he gets so fed up here. We're lucky my husbands family are really close with him and he settles easily with them and they're happy to have him xx

How's your LO doing? Xx

 

[Mrs G]

Hi, how are you doing today?
What a nightmare dealing with infection as well as the tof. Are they giving you any indication of how long the process will be? When Tommy struggles with his saliva they put in a replogal tube which basically sucks it all out for him, has Jessica had that? It's not nice to put in but really helps when they're struggling.

We're back in for dilatation tomorrow, but (fingers crossed) looks like we've got as far an actual scheduled appointment this week, rather than having to go in as an emergency. Tommys had very few signs this week so I'm really hopeful they'll say there's minimal closing tomorrow.

I feel so guilty when I'm not at home but Lily's old enough to kind of get it but she breaks my heart when I'm away with Tommy and she asks if I'm coming home.

Keeping everything crossed for some good news for you.

Kath xx

 

[LaughOutLoud]

Just thinking of you and your heart babies x

 

[Bumblebee2408]

Sorry I've not been in for a few days.... right we have a list of things for you today Jessica is due a dilatation next week.... She's getting very bubbley (the nurses help with this by suctioning it all away as and when needed). However still choking on 5mls of milk..... So next week they're looking at doing a gastrostomy - this is where they make a surgical opening through the abdomen into the stomach. A feeding device is inserted through this opening. This allows her to be fed directly into her stomach, bypassing the mouth and throat.

Then on top of that they are wanting to do a fundoplication at the same time - Fundoplication is a type of surgery to prevent stomach contents from returning to the esophagus. This is achieved by wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus..... However I need to chat with the surgeons about this as I've read up on it and itcam cause so many issues after surgery... Stomach problems, loosing the ability to burp which can cause build ups of air in the stomach which I can imagine would be painful.... As far as I know she's been Ok and doing well on her reflux medications so I'm not sure why they're thinking of doing this.

Anyway sorry for rambling on and hopefully that all makes sense.

Did you know there's a TOF website with lots of info and advice as well..... www.tofs.org

Hope your little one is doing well.

Thank you for thinking of us xx

 

[Mrs G]

Hi, hope you're doing ok.

Wow, you've got so much going on. How is she doing? Which reflux meds is she on? It's so hard to decide what's best to do. You don't want to put them thru operations and you just have to trust the Drs.

We're in again today for dilatation. This is his 5th one but they've said they might wait and see what happens rather than booking in any more. Bit scary with Xmas coming up.

Xx

 

[Bumblebee2408]

Yeh we have lots going on but we just plod along

We've not had a good few days sounds like we're going to be in the hospital til mid January. She's had 3 blue do's yesterday and then at least 1 today and she is back on high flow to help her breathing.

Waiting for a date on her dilatation. Then the other op from there. Hope Tommy's Dilatation goes well for you xxx

 

[Bumblebee2408]

Oooh and she's on ranitadine and domperidon for her acid reflux

 

[Mrs G]

Hi. Hope you and little lady are ok. Xx

 

[Bumblebee2408]

Yes sorry it's been a while again!

This time we have good news.... She had her dilatation last Thursday and was taken off high flow yesterday and since yesterday has also been allowed to try 5ml feeds...... And she has had 7 feeds in total in the last 48 hours (via bottle) and managed it without so much as a cough..... The rest of her feeds have been done down her tubes. SALT team are hoping to come down in the next few days to assess and see where we go from here xxx