Jessie's appointment

[Nikkinoonoo]

Hello ladies,
Today we had to take Jessica to the orthapaedic hospital in Bolsover street, London. We found out that they would be doing the operation in July as we are going away for a week in June. This means she will be 13 months old when it's done. They will be amputating from below the knee so she keeps her joint and it will be done in Stanmore Orthapaedic hospital.
I will be able to stay with her each night so will need to get some sort of chair-bed/camp-bed sorted for that. They expect her to be in hospital for around 5 days and they said depending on healing, the prosthetic will be fitted around 6 weeks later, which is much quicker than I thought.
She is desperately trying to stand and she manages it in her cot, I don't know how, so I will try and take solace in the fact that she will soon be able to pull herself to standing properly. I get so tearfull watching my poor baby try with all her might to do something which is coming so natually to her.
I can go with her when she is put under, they said with a mask, but they said it's not a nice experience as when they go they same sometimes spasm. I'm dreading it. So we will have a lovely month of June, Jessie's first birthday party followed by a week in Majorca but coming home we will have a few hurdles to clear.
I put this here instead of in the special needs parenting as many people ask after Jess who may not see the post in there.
Thank you for your kind messages, thoughts and support, it mean a lot
xXx

 

[Vickie]

That's going to be so scary for you, but the end result will be worth it. Can't wait to see pics of Jessica standing

 

[polo_princess]

Oh hun thats great news that they are going ahead with the op, and so soon too!!

Im sure everything will be fine

 

[miel]

enjoy your vacation and when come time for little Jessica operation we will be all here for you to give you support and strength

 

[~KACI~]

Wow its come around so quick, i look forward to seeing those pictures of jessies standing x x

 

[ALY]

am sure jess will be fine hun
if u ever want to talk just pm
love alison n samsam x

 

[alice&bump]

it'll be hard work, but so so worth it for you

 

[isil]

it all sounds positive it's so so good that you're able to stay with her when she's in hospital.

 

[x-amy-x]

Glad you've got a date hun. Good luck and keep us posted xx

 

[Stef]

All sounds posative in what theyre doing. Good luck with it all hun. I hope she has a speedy recovery too.

x

 

[poppy]

Hi Nicky - you and your little girl are so brave. The op will be hard on both of you but will be worth it in the end. I wish you the best of luck.

xxx

 

[bex]

Hiya, what date in july is Jessica's op? Niamh has her 1st op on the 7th July, she'll be about 7 months old. I'm dreading it. I thought i'd feel better when i had a date, but i don't. I find myself in tears just thinking about handing Niamh to the surgeon then walking away without her. I just want the operations over with.
Also, won't your hospital sort out a camp bed for you? We had to stay in hospital with Niamh for 2 weeks when she was born. We were on a normal paediactric (sp!) ward not special care and all parents were provided with a bed for the night, then they were collected up in the morning.
Sending you big hugs xx

 

[lillysmum]

to you and jessica

 

[Nikkinoonoo]

Hiya, what date in july is Jessica's op? Niamh has her 1st op on the 7th July, she'll be about 7 months old. I'm dreading it. I thought i'd feel better when i had a date, but i don't. I find myself in tears just thinking about handing Niamh to the surgeon then walking away without her. I just want the operations over with.
Also, won't your hospital sort out a camp bed for you? We had to stay in hospital with Niamh for 2 weeks when she was born. We were on a normal paediactric (sp!) ward not special care and all parents were provided with a bed for the night, then they were collected up in the morning.
Sending you big hugs xx

Hiya Bex, they didn't give us a proper date they just said in July and they will send a letter so I spose they will tell us in the letter. I too am petrified about handing over my baby and I have cried myself to sleep many a night looking at her thru her cot bars sleeping, blissfully unaware.
It will be so much harder for us than them, luckily they are so young they shouldn't have lasting memories of it.
They said that I can sleep in the chair, or is the bed next to us is empty I will be offered it but I will get one in Argos to use, they always come in handy. They have something called 'parents rooms' which is a block opposite the hospital where you get a room to keep your things in and shower etc, I'm not sure if they have beds but I want to be with her in the ward not over the road, you know.
What is Niamhs op for and where is it? Not Stanmore by any chance? I wish you and your gorgeous daughter all the very best for what will be a tough time. I'm sure we will all come thru it so much stronger
xXx

 

[princess_bump]

does sound positive sweetie, and jessie sounds so amazing too. am thinking of you and jessie so much, you really are the bravest women and most wonderful mummy i no. thank you for keeping us updated, i really really look forward to the day when you post pictures of your beautiful princess standing. x x x

 

[babe2ooo]

awww good luck with everything i'm sure it will all be fine.

 

[bex]

When Niamh was 2 days old we discovered she had Pierre Robin Sequence. She had restricted growth of her jaw whilst in the womb, so her tongue was pushed up causing a cleft palate. She was quite poorly at first but is now doing great. Her jaw has already grown which means her tongue now rarely blocks her airway and she has had her feeding tube out now for 5 weeks. She is managing all her feeds using a special squeezy bottle.
Her ops are for her cleft palate. Unfortunatley Niamh's cleft is the widest the surgeon has seen for a while so it looks like its at least 2 ops. The 1st one is to close her soft palate so she'll be able to start to talk. She may need jaw surgery when she's older.
All Niamh's ops will be at birmingham childrens hospital, which is about 2 hours away from where we live. I've kept myself busy for the last couple of months planning my son's birthday party and niamh's baptism but now they are both done i've got far to much time to think!! So i'm looking for a holiday for us and we are doing the garden. I've woken in my sleep crying about the op. I'm going to be a wreck.
Also 3 weeks before Niamh was born my grandad passed away and the 7th july would have been his birthday! I couldn't believe it! I know the ops our gorgeous girls are having are completly different but how we are feeling will be the same. PM me anytime x

 

[embo216]

Oh hun
If you ever want to talk about what I went through with Lilys op I can let you know what to expect with the going under, I went with Lily.
I stayed with Lily when she was on the ward, i wasn't allowed when she was in intensive care but the ward had a pull down bed available, might be different for you tho hun as its a diff hospital.
Massive xxx

 

[Nikkinoonoo]

When Niamh was 2 days old we discovered she had Pierre Robin Sequence. She had restricted growth of her jaw whilst in the womb, so her tongue was pushed up causing a cleft palate. She was quite poorly at first but is now doing great. Her jaw has already grown which means her tongue now rarely blocks her airway and she has had her feeding tube out now for 5 weeks. She is managing all her feeds using a special squeezy bottle.
Her ops are for her cleft palate. Unfortunatley Niamh's cleft is the widest the surgeon has seen for a while so it looks like its at least 2 ops. The 1st one is to close her soft palate so she'll be able to start to talk. She may need jaw surgery when she's older.
All Niamh's ops will be at birmingham childrens hospital, which is about 2 hours away from where we live. I've kept myself busy for the last couple of months planning my son's birthday party and niamh's baptism but now they are both done i've got far to much time to think!! So i'm looking for a holiday for us and we are doing the garden. I've woken in my sleep crying about the op. I'm going to be a wreck.
Also 3 weeks before Niamh was born my grandad passed away and the 7th july would have been his birthday! I couldn't believe it! I know the ops our gorgeous girls are having are completly different but how we are feeling will be the same. PM me anytime x

Oh no I'm so sorry to hear of Niamhs problems but it sounds like she is thriving now! No tube and bottle feeds sounds like brilliant progress. I'm so sorry to hear about your grandad, I don't know what you believe but it would be lovely to think she was given that date for the op so her great grandad is there looking over her.
I'm pleased to hear you've had some projects on the go to keep your mind occupied, have fun choosing a holiday!
We have Jessie's first birthday party on June 13th and we go on a weeks holiday on the 20th so we have lots to plan and look forward to before hand Thanks for taking the time to message me, we can be strong for each other
xXx

 

[Nikkinoonoo]

Oh hun
If you ever want to talk about what I went through with Lilys op I can let you know what to expect with the going under, I went with Lily.
I stayed with Lily when she was on the ward, i wasn't allowed when she was in intensive care but the ward had a pull down bed available, might be different for you tho hun as its a diff hospital.
Massive xxx

Thank you so much It's fantastic to have such a great support network hiding away in my laptop. You girls are fab