# 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


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## sethsmummy

im sorry hun i have no experience but wanted to sen you some love <3 <3 <3


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## Bumblebee2408

Thank you. It seems it not to common &#128532;


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## LaughOutLoud

Bumblebee2408 said:


> 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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## 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.


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## LaughOutLoud

Bumblebee2408 said:


> 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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## 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


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## 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.


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## 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


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## 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


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## 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


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## 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 &#128542;

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


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## 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


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## LaughOutLoud

Just thinking of you and your heart babies x


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## 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


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## 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


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## 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


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## Bumblebee2408

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


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## Mrs G

Hi. Hope you and little lady are ok. Xx


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## 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


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## LaughOutLoud

Bumblebee2408 said:


> 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


That's amazing! So good to hear good news and your LO is doing well. Keep it up guys...slowly but surely! Tk cr x


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## Bumblebee2408

Thank you today we've got up to 10ml per feed today. We will be in hospital for a few more weeks yet but these baby steps are good progress xxx


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## LaughOutLoud

Bumblebee2408 said:


> Thank you today we've got up to 10ml per feed today. We will be in hospital for a few more weeks yet but these baby steps are good progress xxx

 Such great news!! Bless her little soul! My DD recovered very slowly too...everything had to be done so slowly and gradually but that's what suited her. She will get there soon and if I don't get to say this later on I wish you an your family a blessed merry Christmas x


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## Bumblebee2408

Thank you Laughoutloud very kind. Merry Christmas to you as well.

She had a little set back this morning where she stopped breathing again. They neo puffed her back round. She's doing well now though and has been fine and still drinking her milk xx


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## Bumblebee2408

Well today jessica went for a Videofluoroscopy of her swallowing. She stopped breathing.. needed oxygen to bring her back round. Got close to intubating her. She's fine now though. Couldn't see anything conclusive her food gets stuck but it's not clear why SALT team have asked ENT to come have a look at it and see if they can spot anything.

No feeds for a while now.

She's stumped everyone


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## Mrs G

Hi
So sorry not been on in a while. I just don't know where the days go. 

How's Jessica doing atm? It's so s
Hard when they make such great progress then seem to go back a little. Baby steps and she is going in the right direction. Keeping everything crossed for you. 

Xxx


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## Bumblebee2408

Hi MrsG, 

Had yet another dilatation and ENT came to do an MLB (put a camera down her throat) to look for problems as after her xray last time they could see milk getting caught but not why.

So she's been off feeds we're still living by nicu but they are trying to move us to the children's.

We should get results of her MLB tomorrow


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## LaughOutLoud

I hope they can give you some answers soon. Take care x


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## Bumblebee2408

She has quite bad tracheomalacia (a floppy airway) They've put her back on high flow to keep it open and stop the blue do's but we're not sure what the plan is long term from here.

They're thinking of a gastrostomy to feed her when we're finally allowed home. I'm just so frustrated 14 weeks old and we're still in hospital I just want to show her the world xx


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## LaughOutLoud

Bumblebee2408 said:


> She has quite bad tracheomalacia (a floppy aitway) They've put her back on high flow to keep it open and stop the blue do's but we're not sure what the plan is long term from here.
> 
> They're thinking of a gastrostomy to feed her when we're finally allowed home. I'm just so frustrated 14 weeks old and we're still in hospital I just want to show her the world xx



Awwww, I understand. Do you read to her? Show her pictures an talk to her sitting next to her? Just some things you can do whilst you're there an be able to show her other things whilst you're there x


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## Bumblebee2408

I do we read children's books and harry Potter as well. 

We sing she's got toys and we play as well. 

Xxx


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## Mrs G

Hi
Ah poor wee thing. It's so frustrating but at least they seem to be finding out what's up. Will they let her go home on oxygen? A lot of babies in Southampton nicu were allowed out still on it. 

How's her weight? We've found that tommy is getting much better as he's getting bigger. I suppose everything, oesophagus and trachea included, grows too. 

I used to read and sing with Tommy in Hospital too. Makes it seem a lute more normal. 

Hope you're doing ok. Keeping everything crossed for you. 

Xx


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## Bumblebee2408

No they don't want her to leave with oxygen so not sure what the plan is from here as yet. She 10lb+ so not big for 15 weeks but a fair size for her xxx


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## Mrs G

Hey, how's things? Xx


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## Bumblebee2408

Frustrating still here she was meant to going for a gastrostomy today. 

However yesterday the decided they wanted to do tests for reflux to see if she needs a fundoplication. Even though 2 weeks ago they did all this and decided she didn't!!

I'm furious. She's 16 weeks now and wanting get to be more active but there's no bed at the children's and I can only do do much with her to keep her active. 

Frustrated


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## Mrs G

Hi
Oh you poor thing. It's so frustrating. I found I had to be quite pushy and basically resorted to pestering the Dr every time they came on the ward! 

Have they said anything else? It must be so hard not having her home. 

Xxx


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## Bumblebee2408

I hate it she's 16 weeks old she should be home trying to roll and play and she isn't. 

I miss her brother like you wouldn't believe. 

She's got to have pH tests done soon then we're looking at a gastrostomy and a fundoplication to relieve reflux and be able to feed her. But that's based on those results which we have no set date for yet. 

She also has bad tracheomalacia so they're thinking of doing an aeortopexy which is where they use the aeorta and attach it to the sternum (bone in your chest) to pull open her airway. 

Very scary op but with good out comes so we'll see what the results bring xx


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## Mrs G

Gosh that all sounds so technical for such a little soul. I hope you've had s good week. Any updates? 
Xx


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## Mrs G

Hey,hope you guys are ok. Xx


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## Bumblebee2408

Hi so sorry. Jessica got a cold and we ended up in isolation for a few days. Then one of her ops got cancelled because of that.... now just to ice the cake.....

Today she pulled her feeding tube out. The nurses couldn't fit a new one. The surgeons couldn't either after 10 attempts and a throughly upset screaming little girl. They decided to put a canula in and take her to surgery to do the surgery they cancelled due to her cold (which she's over now). It took one Dr 3 attempts at a canula before calling the registrar to come do it. 

They can't fit her in for surgery until tomorrow now.... so she's been put on a drip for fluids to keep her full and tomorrow she'll have a dilatation and a new tube put in and hopefully the pH study as well xx


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## Bumblebee2408

How's your little one Mrs G? xxx


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## LaughOutLoud

How are things and your little one? Hope it's getting better each day X


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## Mrs G

Hi

What a nightmare hun. I remember Tommy pulled his tube out early on and I had to leave the room when they put it back in. They really don't like it do they, poor things. One of tommys last ops took ages and when they came back they said it had taken them 45 mins to get a line in him. Theirs little veins just can't cope with it. 

I hope she's doing ok today, you guys are alway in my thoughts. I can't imagine what it must be like. Have they managed to do her op yet? 

We're on, starting to think about weaning. The consultant said to start sooner rather than later and take it slow. Bit scary how he'll cope with it. 

Xxx


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## sethsmummy

hey hun sorry ive not popped in in a while <3 

so sorry to see your no closer to home yet :hugs: I really hope they managed to do the surgery little one needed. Cannulas are awful things to get into little babies. They struggle to get them into Rohan when theyre needed and now tend to use a foot because hes had that many in his hands the viens just shut down as soon as they try to get one in. 

:hugs: :hugs:


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## Bumblebee2408

She's had her pH study done. We're still waiting on results at the moment.

Hopefully though plans for surgery should be made from then. Just want to get on and get her home 

So we're still just waiting but lets see what tomorrow brings. Thank you for thinking of us


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## Bumblebee2408

I'm trying to come online more often to update. Well not much change today. 

Surgeons came for rounds and...... still no pH study results. 

If they're not back tomorrow you may hear that I've stamped my feet like a 2 year old at her drs and surgeons. 

On another front I've been seeing the hospital psychologist as finding it all a bit hard. I've been given meditation exercises which seem to be helping calm me down. So that's a positive for me xx


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## Bumblebee2408

It also seems Jessica's skin has an issue with surgical tape they stick her tube on with it goes red and blistered whenever it comes off she had the tube swopped nostril on Saturday (I believe) and today the cheek it was taped to originally us still red sore and dry. Poor girly xx


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## sethsmummy

I'm sorry they're taking ages Hun. Hopefully they will
Have the results for you today. I'm glad the meditation seems to be helping :hugs: and thank you for thinking of coming in for more updates :) 

I hate the hospital tape. I'm
Not sure what it's called but with Rohan the nurse put like a little gel patch thing on his face so the tape didn't stick to his skin quite so much because he was really hairy with being prem and it kept ripping the hair and top layer of skin off. Ask them
Not to use it and to use something else. Surely they must have something incase someone is allergic to that specific tape. Blistering doesn't sound normal. Rohan just got really red from it abraiding his skin. Never any blisters xx


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## Bumblebee2408

Yeah we've tried with and without comfeel (gel pads) but yeah no change. Poor baby we've tried alsorts.

Still no answers as yet. Again hopefully we'll hear from her surgeons tomorrow *sigh* if not I'm afraid I might have a tantrum to rival a child :haha: 

Hope these messages are reaching you all well xx


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## LaughOutLoud

It's horrid when they already going through so much an then the little things also hurt them...it makes me feel so bad because enough is enough! I remember my DD nasal tube kept coming out and they put so much pressure on it that it was leaving red marks and pressure on her forehead but I didn't know what to say or do because the oxygen was obviously important. She had a mark for a long time after we got her home. 

I hope things hurry along for you X


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## Mrs G

Poor baby, I hope she's had a good few days. 

It's so important to look after yourself. I'm glad your sessions are helping. We often forget about us when we're trying to hold everyone else together. 

Have you had any news today? As lovely as all the staff were I found it was easy to get forgotten if you didn't pester. One day when we kept getting bumped for a surgery slot and Tommy had been nil by mouth for almost 24hrs I just stood in the corridor and asked every single nurse and Dr that walked past when it was our turn! They got the message in the end, probably just to shut me up!! 

Xx


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## Bumblebee2408

No news again.... so I requested a meeting with her surgeons for 8.30 am tomorrow. I've had enough now this was done 10 days ago now we need an answer xx


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## Mrs G

Hi
Good for you. I hope you get some news. I think you're more than entitled to a little foot stamping! 

Xx


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## Bumblebee2408

I foot stamped.... the surgeon was happy with her pH study results (they came back negative for any problems - however they did the test while on reflux meds!!) 

Anyway they've said they want her to have another stretch on Tuesday..... when she's had 4 already at least and in 3 weeks time have a camera put down her throat (for the 3rd time) to look for problems.... they also won't do her gastrostomy in a hurry as she still needs a tube in her throat to help her oesophagus stay open :-( 

So we've at least another 3 weeks before they'll even make a decision for her &#128550;

Sad times but got home to see my big boy this weekend was sooo lovely xxx


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## Mrs G

Hey 
It's crazy things take so long. What's their reason for waiting? 

We're back in hospital, with bronchiolitis. &#128531; 

Xx


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## Bumblebee2408

Oh no MrsG. Hope little one is OK. 

They keep telling us they want to make the right decision and her blue do's were getting less and less so unable to make a decision.... but due to their intensity they've decided theyre doing the aeortopexy...... but story of our lives we'very no set date for surgery yet. 

But it's a step forward so fingers crossed xx


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## Mrs G

Hey happy Friday. Hope you've had an OK week xxx


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## Bumblebee2408

Hi MrsG,

Small update Jessica's dilatation next week has been postponed til the week after due to her surgeon being off again!! (How many holidays can one women have? :haha: )

Still waiting on a date for the aeortopexy. Still at nicu no move to children's as yet.

Ps Happy Mothers day for sunday &#128515; I hope you have something nice planned xx


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## sethsmummy

oh goodness hun it seems they like to do nothing but mess you and your poor girl around! I really hope they pull their fingers out soon! 

mrsG sorry to hear your little one was in hospital with Bronch. how are they now? Bronch is blooming horrible xx


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## Mrs G

Hi
Is there seriously only one surgeon who can do the op?!? Surely if she needs a dilatation, she needs it now??? I'd be livid. Tommy always had the same registrar but 4 different surgeons in the end. A specialist did the original constitution, then he had 2 different on call surgeons for the emergency dilatations and eventually the same guy for the last couple. Surely staff holiday isn't a reason to postpone her surgery?!? You must be climbing the walls Hun. 

Tommy's doing ok. Had taken a while to get over the bronchiolitis. Still coughing lots. The tof cough really is something else!! Have had so many people stare when he gets going!! Bought a steam vapouriser while had really helped at night. 

Hope you get some positive news very soon. 

Xxx


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## Mrs G

Happy Mother's Day xxx


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## Bumblebee2408

Awww thanks MrsG you as well &#128513;

I went home to see my son in the day and we played in the play centre for hours and came back to a very sleepy Jessica this evening. 

Her and the nurses had even made me a card and a photo. I cried bless them xxx


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## LaughOutLoud

They postpone surgery due to staff holiday? Which hospital are you at? Sorry it's still dragging but hope everyone had a nice Mothering Sunday x


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## Mrs G

LaughOutLoud said:


> They postpone surgery due to staff holiday? Which hospital are you at? Sorry it's still dragging but hope everyone had a nice Mothering Sunday x

I agree, it's awful! There should always be a paediatric surgeon on call to cover. Hope you're having an ok week xxx


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## Bumblebee2408

They do have someone on cover but this surgery her own surgeon wanted to do however...... development and a half....... her surgeon only had Friday to Tuesday off..... and last minute she could get the team together on Thursday that she needed to do Jessica's Aeortopexy...... which she jumped on soooo........ Jessica had the surgery on Thursday (10.03.15) Hurrah! 

Scary op she was in surgery for 4 hours but came out well. She is still on a low dose of morphine and is on high flow after coming off her ventilator yesterday. (It was touch and go if she'd end up back on it but she's managed to stay on just high flow). 

Although as she was moved to PICU she's managed to pick up the rsv virus (similar to bronchilitus). However so far she's not been to bad with it. 

Hopefully moving to the ward tomorrow and then it'll be onwards and upwards from here. Only time will tell I guess xxxx


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## Mrs G

I'm so glad she's had the surgery! What exactly did they do? Rsv is nasty, Tommy tested positive for it when he had bronchiolitis. Hope she's on the mend. 
Xx


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## Bumblebee2408

The wrapped part of her aeorta around her sternum (bone in her chest) to pull open her airway. 

Unfortunately...... after a week of it looking good and almost thibking about going home..... yesterday evening she went blue and had to be bagged around &#128550; so it's back to the drawing board I guess.

Feel so downhearted today xxx


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## sethsmummy

im so sorry hun :hugs: so glad to see that she has had her surgery and it went well. so sorry to read shes managed to catch rsv, that could be the cause of the recent episode hun. my little one was very poorly when he had rsv/bronch and PICU/HDU was full of other babies with it when we were in. xxx


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## Bumblebee2408

Well it Deffo looks like the op has failed. She had a major melt down on Thursday. It was so bad she's had a partial lung collapse on both her Lungs.... she's aspirated which she's still having physio to help with that and she's been on a ventilator since as well. 

It has been a horrific week xx


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## sethsmummy

oh hun im so so sorry :( :hugs:


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## Mrs G

Oh my goodness I've only just seen your news, I'm so sorry. Any updates? Thinking of you and your girl xxx


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## Bumblebee2408

Hi Ladies, 

Thank you very much.... she definitely went downhill poor baby is still ventilated 2 weeks later and she's having twice daily chest physio.... Although it is finally looking clear on x-ray's and for the first time since her meltdown she's been smiling and wiggling today even with a ventilator tube up her nose.

Anyway moving forward the hospital have realised her issues lie down closer to her bronchial tubes near her Lungs hence why they believe her aeortopexy didn't work. So they now want to do a bronchogram tomorrow.......

During a bronchogram a camera contained in a flexible tube (bronchoscope) is inserted into the airway to look closely at the airway wall. This allows drs to see if the lining of the airway is inflamed or compressed.

Secondly, a tiny amount of contrast  a substance that shows up well on X-rays  is put into the airway and X-rays are taken from various angles to give accurate measurements of the size of the airway and where the problems seem to stem..... from there they'll decide if we trial a cpap mask and wean her off it slowly as her airway gets better..... or if they need to do a Tracheostomy (which they think may need to be ventilated) this is quite a scary thought... she'd need 24hrs care but I know we'll cope the best we can xx


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## sethsmummy

oh hun im so sorry shes still ventilated! I really hope the bronchogram goes well and they can find the route of the problem. I will have everything crossed that you can go down the cpap route instead of a trach. <3 :hugs: :hugs: <3


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## Bumblebee2408

The bronchogram showed very little as she was very relaxed during the procedure..... so frustrating.... so they still want to trial CPAP (which if I'm being honest I don't think will work).

Just a stressy situation xx


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## sethsmummy

oh hun i wish there was something i could say that would help take away some worry or stress but i know there is nothing i can do but offer virtual love and hugs. 

I really hope she surprises you and the Cpap works <3


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## Bumblebee2408

Thank you sethsmummy. She's also poorly now had a temp of 39 degrees, vomiting. She got in a right little state today as she didn't know what to do with herself. Bless her. 

We have her MDT meeting with all the teams involved in her care tomorrow to discuss her plan from here xx


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## Bumblebee2408

Just to update we've had our MDT meeting and it's been decided a cpap mask would not work for our little girl as she would have to be weaned down to only using it at night and nap times before she'd be allowed home and since her non breathing episodes happen while stressed and upset (and whilst awake I might add) it has been decidedited she'll need a Tracheostomy. Unsure if the Trachey alone will work or if she'll need ventillation support..... only time will tell.... if it's just the Trachey we could be in hospital just over a month at most and be allowed home. If ventilated she'd need to stay another 6 months while we train on Trachey and ventillation support etc and a care plan is put in place for her. 

Sad days as it does feel like a smack in the face when she's done so well in the past on minimal ventillation and non at all sometimes. But it's good as it's also moving towards home eventually either way it ends up going.

Thank you for your ongoing support ladies.

Ps...... Anone who may read this with a TOF/OA baby (now or in the future) not all tof's are like this apparently our case is quite rare usually they have their repair and get to go home within a few weeks.... the reason we've been in so long is because she's has severe tracheomalacia which is affecting her airway. 
Xxx


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## Bumblebee2408

Jessica went today for her Tracheostomy, Gastrostomy and a dilatation. She has come out really well. The only slight hitch she had an allergic reaction to morphine so got a rash and went a little puffy. 

However they changed her morphine to something else and all seems good from there. 

Xx


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## sethsmummy

oh hun im so sorry its come to this :( 

hopefully with the trachy it will just be a case of its there so you can give her the support when she needs it and she does the rest by herself when support isnt needed. She is such an amazing little girl hun she really is. <3 <3 

is she feeling better now hun? I hope the swelling has gone down from her reaction.. thats quite a common one to react to the high meds. my little boy cant have Fentanyl as it plummets his BP and takes days to bring back up. I pray that she doesnt need to be ventilated though hun so that you get to take her home sooner. <3


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## Bumblebee2408

Fentanyl is what she's on now instead of morphine bless her. She's a lot better from her reaction. She's still a bit stressed out with everything but we're slowly weaning sedation and seeing how she gets on xx


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## sethsmummy

I'm not surprised she's a bit stressed bless her. She gets used to one thing and everything seems to flip on her. I hope everything settles down as her body slowly adjusts to the trachy. :hugs: 

How are you doing mumma and how is your other little one doing? Xx


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## Bumblebee2408

Jess is doing really well she seems much happier since the weekend has ended. Things are finally settling down and causing her less pain now which is good. Still unsure if she'll be able to come off her ventilation through her Tracheostomy or if she'll need it more long term only time will tell. 

Jack is well I sobbed leaving him the other day though it's all getting very hard for me now. Leaving him long term is the hardest thing I've ever had to do.... no parent should have to leave there children.


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## sethsmummy

I'm so sorry Hun. Are you far from him Hun? 

So glad to hear that Jess is doing much better :) xxx


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## Mrs G

Hi
You guys are really going through it. I hope you're doing ok. What's the update on little lady? 

Your comment about people reading this and Jessica being an extreme tof was so self less. Yes there are loads of degrees of tof/oa. Tommy had to have 5 dilatations in 6 weeks and had some scary blueys. I know of some babies who have their construction then never need further treatment. Your little lamb has really had a rough deal and yet you're worried about scaring people with her story. Amazing to be thinking of others at a time like this. Massive hugs to you mama. Xxx


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## Bumblebee2408

Sethsmummy: We're about an hour and a half's drive from him. But as he's so little it wouldn't be fair to have him here with us. He's very outdoorsy and hates being stuck inside. However we've said if she has a ventillated Trachey in the end then we know she'll be here at least another 6 months. So then we'd obviously bring him. Hoping she won't need it xx 

MrsG: Thank you for youreplying kind words. I don't think it's selfless many manyears tof's are straight forward and I've not seen many links on here I don't want people to assume it means having a TOF baby will mean they live in hospital 24/7 it's been the case for us but we're told lots by the hospital that she is quite a rarity (even though there is another baby whose 20 days younger whose in a similar situation. However our 2 girls are the only tof's here and have been since they got here :haha: ) 

Update: Since being really stressed at the end of last week and over the weekend Jessica has done so well. she is much happier and calmer with her Trachey and they've been able to wean some of her sedation and medications down. She's actually had a few smiles today. However we've been told they won't fit a speaking valve for her Trachey until she's older. So we're now in the process of learning basic signing to help her communicate as she grows. It's sad we might not here her laugh or speak until she's older but if it's what she needs to keep going then we're just happy to keep encouraging her.


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## Abii

I'm so glad to hear that awesome update hun, I've been thinking about you guys alot and I'm glad she's doing better<3


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## Bumblebee2408

Thanks Abii.

Today Jessica got to come off her ventilator for a break for 1hr &#128516; she did really well. I was sooo proud of her. She managed quite well so we'll see how she gets on I guess over the next week or so xx


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## Abii

Bumblebee2408 said:


> Thanks Abii.
> 
> Today Jessica got to come off her ventilator for a break for 1hr &#128516; she did really well. I was sooo proud of her. She managed quite well so we'll see how she gets on I guess over the next week or so xx

Aw that's amazing to hear! you have a littler trooper for sure<3:hugs:


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## Bumblebee2408

We do I'm so proud of my babies jack has been such a big boy while spending loads of time with nanan and grandad while we've been back and forth from the hospital. 

Jess has just been such a fighter it's unreal.... everything she does is with a smile and today after a month of not being able to hold her (as she was ventilated through a tube in her nose before the Trachey and was healing for the week after surgery) while she had her ventilation free time we had cuddles and lots of smiles &#128515;

Happy Momma I just hope she keeps it up and doesn't need the ventilation long term xx


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## sethsmummy

oh hun im so so happy to come back on and read these amazing updates :dance: sorry ive been mia, weve had another night in hospital and him being poorly. 

That is fantastic that you will be able to take him in hun but i know what you mean with it being unfair to take him in. When we were in PICU with Rohan his brothers only came once because there just isnt the space in there and i felt it might be a bit much for them. 

I am so so happy that you got to have some proper cuddles <3 <3 And i cant believe she did so well off the ventilation. I really hope they can keep giving her ventilation free time and you get to hold her more and more. :hugs:


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## Bumblebee2408

Well yesterday was fun.....

Jessica decided behaving wasn't much fun and very quickly developed a septic shock attack as one of her lines got infected her heart rate immediately jumped up high, then she dropped her o2 rates..... she was screaming constantly for hours and vomiting. Spiked a high temp. She finally settled with the help of two doses of medazalam... fluids.... paracetamol..... loads of mummy cuddles and whatever else they could do to help.

Anyway she had 6hrs off the ventilator today with no issue. Hurrah &#128516; xx
Xxxxx


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## sethsmummy

oh lord Miss Jessica needs a break poor girl! I am so glad they got it under control hun. Thats sounds absolutely horrible. Thats Amazing she has more vent free time today :dance: long may this continue hun.. have they set a plan out as to how often she can come off or is it just a case of see how she is doing at the time? xx


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## Bumblebee2408

At the moment it's just try her longer each day then off the ventilator completely and see what she does &#128516;

Today she had 10 hours... Tomorrow they plan 12 hours then over the weekend off completely..... Hopefully from there we can leave ICU and move to HDU.

But baby steps I still don't trust that she won't go blue once they take her off completely..... this is Jessica xxxx


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## Bumblebee2408

Ps my baby was 7 months old today!! It's a good thing but at the same time feel I'm being robbed of my baby stuck in hospital all this time &#128547; xx


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## sethsmummy

omg thats amazing! i really hope the weekend goes without a hitch! she may not have to work as hard now with having the trach in which may help! I will have absolutely everything crossed over the weekend thinking of you both <3 <3 

Happy 7 months old Jessica <3 I can understand that hun. Its not the same but i have the same emotions regarding Rohans newborn days so i can kind of understand it. Is there anybody at the hospital you can talk to regarding the way you feel hun? I really hope you get to take her home soon <3 <3


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## Abii

Aw happy 7 month birthday Jessica:cake::bunny: how did her being off the vent go?


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## sethsmummy

I hope everything is going well hun! xx


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## Bumblebee2408

So far so good she's been happy and smiley there's even talk of her finally been able to use her stupidly expensive buggy!! Lol :haha:


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## sethsmummy

ahhh i am so so happy to read that hun! it sounds like she has turned a corner and i hope and pray that she stays on this path hun and continuous to improve! xx


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## Bumblebee2408

Today was the most amazing day ever our nurse was like "you've got your buggy great &#128516;&#128516; let's go out for the day while you're little boys here" 

We went out to pizza express for lunch with the kids and my in laws &#128516;&#128516; jess loved it and it was sooooo nice to do normal things with my babies


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## Bumblebee2408

Ps see profile pic for my new photo of my babies together after our outing today


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## Abii

Aw they are too adorable! I'm so happy to hear that Jessica is doing so well and that you guys were able to have a nice day out<3 hopefully it just keeps getting better from here:flow::hugs:


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## sethsmummy

Omg I could do a little squeel how happy I am for you! I can't believe she finally got to go out for the day! :dance: :dance: this is exciting stuff!!!


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## sethsmummy

Oh and what a beautiful photo :cloud9:


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## Bumblebee2408

Thank you ladies it felt amazing and that photo brings a tear to my eye every time I look at it my kids are amazing xx


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## LaughOutLoud

Oh wow! That's a beautiful picture, God bless X. I'm also happy to hear you were able to go out for a family meal together, that must be such an amazing feeling...I pray that things continue to look up for you all x


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## sethsmummy

your children are definitely Amazing and so are you! how is she doing hun? I hope she is still surprising everyone and doing well xx


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## Mrs G

Hey
Oh my goodness, she's doing amazingly well. So chuffed you had a lovely family day. Normal is something we all take for granted. 
Keeping everything crossed she keeps doing well. 
Xxx


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## Bumblebee2408

Hi everyone thank you so much for thinking of us.

She's doing really well she got really upset the other day and didn't go any shade of blue so looks like the Tracheostomy haso done the trick... I'm just getting no sleep with her atm.... I'm living on ward with her in hospital.... she's pump feed every 3 hours (over an hour) the pump needs flushing before and after and setting up and taking away each time... she also is sectioned at least once an hour and she has a chest infection so 2 hourly has nebulisers.... so as you can tell from that I'm pretty much awake 24 hours a day. 

This is why I've not been online much. She's only been having an hour bap a day too.

But extra good news on top of that tiredness is that we're finally after 7 and half months moving back to a hospital Near home with a Jessica &#128562; I'm so nervous but also can't wait xx


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## sethsmummy

yeehooooo! Thats fantastic! what a clever little girl you have and getting to move back closer to home <3 <3 <3 Im sorry to hear she has a chest infection and your getting no sleep but hopefully that clears soon <3


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## Mrs G

Hey, how's things? 
Did you manage to move closer to home? 
Xx


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## sethsmummy

I hope your ok Hun xxx


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## Abii

Glad you guys get to move closer to home:hugs:


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## Bumblebee2408

Hi Ladies,

So sorry I've been away so much a month ago we managed to move to a hospital nearer home. Since then we've had a care package go to panel and our local council are paying for us to have 4 nights a week care which will help us greatly.

However carers need there own room to care for her in which we simply don't have.... We've applied for help through our local council in housing as we're in desperate need and they're making social services come out to assess where we live before they'll even put us on the list. That could take weeks to sort &#128547; feel like we're being kept on for the smallest thing now. I know it's right of the hospital to keep her but we wish someone had told us this could have been the case months ago so we could've had all the assessments done in advance.

I feel so sad my baby is 9 months old and never been home xx


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## sethsmummy

Oh Hun I'm so glad that your closer to home but so sorry your hitting more hurdles :(
How is she doing with everything? I really hope she's still going well with the trach &#10084;&#65039;&#10084;&#65039;


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## Bumblebee2408

She's had no blue does since her Trachey was in which is good. Although she gets lots of chest infections and goes back on to oxygen on occassion. (She's currently on it again at the moment). 

But we're still back for dilatations every 2 weeks in Bristol. So a lot going on. Just wish we could get her home 9 months in hospital is far to long xx


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## Bumblebee2408

Oooh also she is being fed via a pump into her stomach over an hour and half as shes sick otherwise and to top that off shes fed 3 hourly like a newborn so that's tiring work. She also needs suctioning whenever she has too many secretions stuck in her trachey (which for want of a better description is like vacuuming her airway out). She has daily dressings and take change of her Trachey as well as weekly ones when we change her Tracheostomy tube as well which is still scary every time but we're getting there xxx


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## sethsmummy

It's a lot for you all to take in. I remember when Rohan was in the PICU thre was a little boy with a trach in at the same time and how often he needed suctioned. I had thought Rohan needed a lot but this poor little poppet was bein done every 20-30 minutes bless him. That's a shame she's struggling with chest infections? Is the quie common with a trach? 

I'm glad she's tolerating the tube feeds Hun. 9 months in is a very very long time but hopefully you will be home soon. I made a friend while in the PICU and their little ones have a rare genetic condition and they'd both started in hospital from
Birth. The little boy got home bye the little girl has to stay and eventually she ended up on a trach bu they did finally get home after that. It was just after her first birthday. I hope that gives you some hope.. I follow them in Facebook now as they have a page for their children an fundraising xx


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## Bumblebee2408

Aww sethsmummy 

Thank you that does help yes jess at least needs suctioning every 30 minutes some times a lot more and yes Trachey babies are more prone to infectionsee etc as the Trachey is a direct access to her Lungs &#128547; poor baby

Hoping she'll be home by the time she's 1 xx


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## sethsmummy

I will keep everything crossed for you! 

Are you managing to get more time with your little man now your closer to home? Xxx


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## Bumblebee2408

Apologies I've not been on much the last few weeks here not sure what I've written in previous posts so thought I'd update fully all that's gone on recently..... Jess had more surgery on thursday this was yet another stretch of her oesophagus ahes been having these every 2 weeks since christmas. I've finally booked an intense week long driving course to get myself driving as I need to now. I've left work recently to look after Jessica when she's finally home.

The government here in the UK are funding some care for Jessica so we're hopefully getting 4 nights a week respite so I can sleep as she is pretty full on 24/7. 

She is fed via a pump by a gastrostomy tube in her tummy. She has 6 hourly nebulisers (currently sometimes more often if she's unwell). She then needs her Tracheostomy suctioning when it gets clogged with secretions...... in the mean time my 2 year old boy is a typical little boy he's into climbing everything and I mean everything, playing with cars and trains and because of those Loves anything to do with Thomas the tank engine (assuming you guys know who he is? and he's not a completely British programme like it was when I was a child) he talks non stop now... he can do at least 3 word sentences and always says Please and Thank You's. Bless him he's so good. He can also count to 15 without any prompting at all.

What else ohhh yes because we need night carers they want Jess to have her own room. Now we thought she could share with Jack before all this so now our local council housing association are trying to find us an affordable 3 bed property. Which is good but a long process and part of the reason we can't bring her home.

So all in all busy life and a stressful time but we'll worth it once we're finally home with her. 

Being a TOF mum is hard and I hope anyone else who does come on here for support will find some of this helpful xxx


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## LaughOutLoud

You an your family are always on my thoughts. You sound much more better Hun an I wish you all the best. I'm glad you're going to be getting the help an some much needed rest.


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## Bumblebee2408

Thank you laughoutloud it's been a long year but it's been sooo worth every hard tearful minute of it. Xxx


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## Bumblebee2408

Just to update we get the keys to our new house tomorrow &#128516; hurrah ..... we managed to bring jess home for a few hours for a birthday party on oxygen she had a bounce on the bouncy castle and everything. It was amazing to have her home. 

Hopefully we'll get her home soon xxx


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## Bumblebee2408

Oooh to add she's pretty much been on oxygen most of the time.... only low amounts but at times she has gone off colour blue again. I'm dreading something going wrong with her.... Hopefully it's just cos she's been a bit poorly lately. Xx


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## sethsmummy

Oh Hun I'm sorry I've been mia lately. What fantastic news that they have found you a house!!! Have you a date for bringing her home properly now or is it still a waiting game. I'm so so happy she is doing so well. Cannot wait for the day you write your all together as a family xxx


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## Bumblebee2408

No date as yet but we're getting there hopefully we can plan for one soon. 

Bless her won't but soon though as she's struggling with pneumonia at the moment &#128543;


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## sethsmummy

oh no im so sorry hun :( poor poor girl pneumonia is horrible :( xx


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## Bumblebee2408

Yes but she's quite happy and just ploughing through it bless her. 

I've started painting the house and my kitchen is done xx


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## Bumblebee2408

Hello everyone....


We'll good and bad update.....

Good update: after 466 days in hospital...... Jessica has finally come home hurrah &#128516;&#128516;

On the down sound last month she finally got her horrible nasal tube out for a month...... only to have surgery today and have it put back down. 

Poor bubs but we're home &#128513;&#128513;&#128513;&#128513; YAY


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## LaughOutLoud

Congratulations on bringing her home finally. You An your family really deserve it, after such a long, difficult journey I pray things go much much smoother for you all x


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## Abii

I am sooo happy to hear that she is finally home! congratulations, she is such a strong girl and you are such a strong mommy <3 I think about you guys a lot even though I don't login much anymore:hugs:


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## Twag

I just read your whole story and wow I am so pleased she is home now and you can all be a family together you are such a great & strong mummy

sending your beautiful girl all of my best wishes for the future :hugs: :flower:


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## sethsmummy

hey hun its been so long since i was on here. 
I am so so happy to see that you have finally got to bring her home! Im so sorry shes had to have the tube put back down again but hopefully it wont be for too long. 

how are you all doing? I really hope your all keeping ok xxx


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## Bumblebee2408

Hi everyone...... thank you all for your kind words itd been hectic since january. So update:

Her tube is still in place. She's now having steroid injections into her Oesphagus to help strengthen it. We prat that works or we may have to figure out a new plan. She's generally on oxygen 24/7 now which is frustrating we can't seem to wean her down but she's coping well on it. She is finally tasting bits of puree (at almost 18 months old) &#128514;

Jack is amazing he's learnt to help me look after her and at two and half years old can out the attachments on her Tracheostomy when she pulls them off. He helps me suction her Trachey tube out when she needs it (under supervision of course) he can count to 25 with no help.... can sing the ABC song.... recognises colours and shapes easily and we're practicing writing already with wipe able books.... he also non stop talks in full sentences now he's amazing even with all this stress he's ahead of where he should be at his age.

As for Jessica she's now crawling and can stand aided being at home is bringing her on developmentally and she is starting to learn makaton sign language with us so she can communicate as she hates the speaking valve in her Trachey and won't tolerate it.

Hopefully I'm not making this complicated cos I know what all the kit and stuff we do with her means &#128514; 

We're still off for surgery every 3 weeks at her major hospital including an over night stay which is a bit of a pain but this is ongoing for the future as far as we can tell at the moment. Oooh and the poor mite is just getting over chicken pox &#128547;

That's all I can think if at the moment but I'll try and update again soon

Thank you all again xx


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## sethsmummy

Hi my lovely! I am so sorry I went MIA off of BNB again! How have you been? How are Jessica and Jack? xx


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