D'y ever wonder how much effort goes into thinking of these thread titles?

[curiositykilledhaskittens]

LOTS!

Thanks everyone, can't tell you how much it means that I can offload here at the moment.

LG&T and Frumpster, background to this is that ds1 also has a congenital heart defect that was missed at birth and he was operated on at Alder Hey 9 and a bit years ago. It was different in that he was an emergency case and that without surgery we would have lost him. The surgery was a newish procedure and quite risky so I am basing a lot of my fears on that I suppose. He is now leading a pretty normal life having said all that - we are really very very lucky.

When the dts were born back in October, dt2 was diagnosed with a murmur which was later confirmed as Aortic Stenosis. When he was in SCBU at our local hospital we managed to get him seen by ds1's cardiologist, who said that it was only mild and was more a leaky valve/bileaflet valve than a proper stenosis but wanted to see him at Alder Hey to confirm using their better equipment. Yesterday when we went to Alder Hey they confirmed that the aortic valve in dt2's heart had thickened and that is why he needs surgery. The options are that with a balloon catheter they can stretch the valve so that it is thinner but this may also make the leak worse and then he will need a valve replacement straight away and also throughout his life as replacement valves don't grow with the child. If they do a valvectomy (yes, really it is called that) then they can play around with the existing valve so that it can function better. As it is he own valve it will hopefully grow with him meaning less intervention later (although I am not totally sure of this). It is also a more precise surgery but means open heart and putting him on heart/lung bypass and a ventilator whilst they do that so is similar to ds1's op in that respect. It is a more routine procedure and as he is older than ds1 was and not poorly he would hopefully have a smoother time of it than ds1 had. I am worried about the risks of surgery on such a small baby but without the surgery he will go into heart failure as the ventricle in his heart works harder because of the blocked valve and thickens and becomes less efficient . He looks so so healthy now, I cannot believe that he is really ill .

I hope that explains it a bit - I'm sorry if I've not made it sound very clear. Family support is OK and local at least though so we hopefully will be able to split our time between here and the hospital. What's the betting they will suggest half term week for the surgery? The consultant is meeting with the surgeons on Thursday so we will find out then.

Oh Bagpuss, I'm so sorry. It sounds like they are pretty positive at the hospital, though? Everything is going to be fine, but I can only imagine how you must be feeling. E needed a hernia op at 12wo and that was scary enough... Alder Hey is one of the very best hospitals in the country though, he will get the very best care there. The NHS is wonderful. It is fabulous that your DS1 had the same op and is now leading a full life - he had a worse time of it it sounds like, so your DT has an even better chance of a fantastic outcome.

Hi Neenz, yes they are, it is pretty routine to them I think. I know it is a good hospital, the ICU is fantastic there and the staff did as much to look after us as they did for ds1 when he was there .

What sort of hernia did E have? dt1 has an umbilical hernia but I don't think she will need it repaired until she is much older if it doesn't disappear by then of course. We have Neonatal Clinic this week as well so knowing my luck the doctors there will probably say that it needs sorting out .

Trips don't feel bad about the cake. ds1 had a bought one last year because I was recovering from a cs and visiting the dts in hospital - it wasn't possible and he understood that. I hope the dts have a great time btw.

TK, still no news from Estar? I really hope things are going smoothly for her dt and that they are home soon.

Bagpuss - ((((HUGS)))) to you re DT2 and open heart surgery - but from what I remember it is the better option to repair a stenosis.
Will be keeping everything crossed for you. I'd be mad with fear, I think.

baggy, its no wonder you feel that lurching sense of fear. Not only are you worried about your darling DT but you also have the past to lurk and tease you. xxxxxxx

If at all possible, try to block out what happened before, just for a while. Think of this in its own little pod. Procedures and everything will have changed so much in the time that it might give you a bit of peace from your own worried mind to try to face this afresh. Only a thought.....I could be talking mince. I do frequently talk mince. (Although not in the words of TKB who always compliments my words, and who I might like to marry were she single, and who is clearly deranged.)

How long will he need to stay in hospital....in totality? There is never going to be the right time for this and so I guess you are just going to have to build yourself up to taking a very deep breath and getting this op as soon as possible. I hope we can hold your hands all the way.

Would it help if I said...... 'you can't change this you can only deal with it'? Sometimes you need to know you are not responsible for this and you are not responsible for fixing this.

Sorry have not posted in so long.

First off, Trips, estar and bagpuss, I am so sorry to hear about what you all are going through at the minute. I can't begin to imagine how you are all feeling, and I want you to know I'm thinking about you. I know I haven't been on this thread very long, but from reading your posts I know that all of you are strong, determined and resourceful women who have the capacity to get through your current situations. I hope it helps (in some small way) to know that there are people out there, including me, who are thinking about you. I'm too far away (Belfast) to offer any practical support, but will be praying for all of you xxxxxx

DH is back to work proper this week after DTs birth. My sister was with me for a few hours yesterday, and my Mum was here today. So tomorrow will be the first full day of me being on my own with the twins! We plan to go to our local breastfeeding support group. Bf still going well, boys getting big (will be weighed again on Thurs; last weights 9lb11oz & 9lb2 1/2oz almost 2 weeks ago). I am eating like a horse! Currently same weight as I was when I got married (regrettably will never be the same shape!). Will have to be very careful when I start to wean the boys, otherwise I will be mahoosive!

DD continues to be a rascal. This evening she followed me into the bathroom & before I could stop her she stuck both her hands into the toilet bowl (luckily had just been flushed) .....& licked them (Obviously I am not envious of her, rather this was the colour of my face when I realised what she had done.) She, of course, thought it was hilarious. Hopefully her immune system is up to the challenge.....

bagpuss..so sorry to hear about your news - I am thinking about you and trips and estar xxx

Estar has sent me updates which i am sure you will want to hear --- earlier it was all v baffling as docs said that her DT had signs of infection despite him appearing very fit and well....she just texted to ask me to update you that she was having a crap day because the results are more baffling and they are having to take her DT to surgery tomorrow to take lung fluid samples, bone marrow samples and a lumbar puncture. Estar has been assured that the latter are easier due to children having soft bones but due to the stress she and her DH are obv struggling. However it has been lightened by other DT ringing and talking to the DT in hospital resulting in them both crying wiht laughter...awwwwwwwwwwwww

She will update me tomorrow and will keep you all posted ....have sent big loves xxxx

Love to all tonight. I am going to my bed. xxxx

Gawd help us and save us every one!!! Just found half a bottle of gin in the Christmas cupboard LOL - well.....the shop assistant at our corner shop said it was Independence day in India so I felt I had to mark the occasion!! xx If my twin comes on later remember to tell her to sod off!!

Shes here and needs a slurp! Been in bed since 9pm, just prized the laptop off of James. H is in such a bad mood, snapping at us all, I know its not his fault, but its the kids b/day tomorrow and they are sooo excited, they dont understand whats going on.The last two b/days have been like this, living under the big black cloud of this rotten disease. I can`t change it, I can only face it and be strong, but feel so scared and absolutely gutted. Mines a gin and bitter lemon Shabs

Hiya darling - Ive got tonic, coke or fresh orange - but no bitter lemon!! sorry - not much of a bar this.

Happy Birthday to your amazing sons and daughter.....WOW cant believe they are 12 - also cant believe Tom is 13 at the end of July!!!!!!!!

Sending all my love and kisses xxxx

Blardy hell. Poor Estar The stress and worry must be unbearable. I wish i could do something.

Thank you HM for keeping us updated.

Derv you sound like you are doing a fab job

Happy birthday to the Triplets It is Ds4's birthday today too! He is going to be 5. He was born at 8.20pm after a 40 minute labour

Goodmorning, sorry I disappeared last night, I was on the laptop upstairs and H was on this thing down here and he switched off the router!! Baggy I am so worried for you, poor poor you, it is so scary for you I know. Have faith in the surgeons, we have the best in the world, he will be in safe hands, but all of this will not stop your worry I know. What is happening to us all? I hope Estar you too are coping, we three have all our lovely gang on here behind us, and you know how powerful they all are! Up early to get things sorted as its going to be bedlam to get them out of the door by 8am! Guess what though? The central heating doesnt seem to be working, dread telling H when he gets up in a mo. One bit of good news to tell, if we get a letter from the hospital the travel agents are going to refund us £300, better than nothing in our current situation. My worry is that we might have to fund some of the treatment, well see. Back later, love to all with worries xx

Good morning girls xx

HAPPY BIRTHDAY to the trio and to LG&T's little one (its also my BiL's b'day today).

LG&T, you posted before 6am, it makes me feel ill I have a 6am alarm and not a second before. I am naturally an 8am girl. Is it wrong to dream of retirement when I can waken to the radio and an electrical teas maid?

HM, thanks for the update. estar, my heart goes out to you and all your family. It such a horrible situation to have to undergo all these intrusive tests. You want to scream and shout and not go through it. But ultimately this gets you one step closer to being home. Please know we are right behind you and hold you close all day, every day. In your moments of meltdown, know we are there. Can I send anything?

baggy, how are you today? Keep talking. Never think you shouldn't. Its like having children....there is always enough love to go round. There are loads of us and "we have the power"

trips is it the boiler? Hen, I love how, in the face of all the stresses that are dancing through your life atm, the broken heating gets the tiniest of mentions LOL! You casually slipped it in Right, as queen of broken heating (4 times over the xmas period), tell me the symptoms.......... is the boiler working? Have you got one of these policies with the gas board? Homeserve? I think its a bout £13 per month and they will come out and fix your heating straight away. Isn't your boiler new? I seem to remember........

pinkfrog, tell your twin to get her arse back in here now and again. I miss her

@ my twin Frumpster!

Ooooooohhhh I am so tired - mentally tired IYKWIM? A child coming up to 13 in the Summer who is so typical of that age, BUT I had forgotten the 'delights' of this age a 28 year old son who needs me more now than he did when he was a little boy! 'Mum, can you help me with my garden?, Mum I know you have had Lew all week but can you babysit Saturday night, Mum what would you do about x,y,z!!!' A grandson who is the boss and runs rings around me an a husband who panics about everything and wont even use an ATM that he hasn't used before - 'in case he does it wrong!!' Aaaaaaaaaaarrrrrrrrrrrgggggggggghhhhhhhh!!

Petty niggles and exasperations I know - especially with all the illness and worry that is going on at the moment on this thread. Just feel like there is a real possibility my head will explode very soon.

Happy, Happy, Happy Birthday to the Triplets - I remember how excited Trips was after they were born and how I sat in my house wondering how the hell she was doing such an amazing job with three of them!!

Rubes i LOVE TKMAXX for their cushions. You can buy twice as many as they very reasonable and so lovely.

Ds4 has opened his presents and scooted off to school on one of them! He was very happy He has requested hot dogs and chips for tea tonight. They always get to chose on their Birthday. Luckily the twins chose tha same thing!

Shabs you must be a lovely Grandma. My Mother visits once on a blue moon and even then it is usually tied in with something else. Ho hum.

Trips were the Triplets happy this morning? How is the heating?

Hope Bagpuss and Estar are ok.

Happy Birthday to DS4 LG&T - hope he has a lovely day xxx