Holiday - Celebrate!

Well it's my last week on holiday from work - despite taking a total of 6 weeks off work I've ended up with just over a week at home with Niamh and Joe and Sylvie. Still, we're having fun getting used to each other.

Sylvie seems to be going from strength to strength - she is feeding well and was weighed today and had increased her weight by 8 ounces in a week (though we had just fed her - ssshh - don't tell the health visitor). There seems to be a problem adding pictures at the moment but I'll try later

I was best man at Andy and Aine’s wedding on Saturday. It was great. Beautiful church (link attached http://www.stetheldreda.com/home.html ); amazing choir; great venue for the reception (an old bank on Chancery lane converted into a pub); Aine looked wonderful; great speeches (!). It was also just amazing to catch up with so many friends – to name a few Andy and Aine, Conor and Liz, Sam & Paul, Mark & Phil, Vic, Beth, and to meet the Magees and Foleys and all their friends. I can’t do the wedding justice in a few lines so I won’t bother – ask Niamh!

Have to say a huge thank-you for all the cards and presents we’ve received. We are way behind with thank you cards but will get there eventually. In the mean time – THANK YOU!
Huge thanks of course to Breda and to my Mum and Dad for their stunning baby-sitting performances. We’re talking 6.30 am to 7.30 pm with no breaks and onto night duty. We asked a lot and you delivered! THANK YOU!

I'm trying to attach a video from the days when we went to visit Sylvie in hospital several times a day. When we took Joe, he got very excited by the lifts as you can see – and seemed to be very keen to see Sylvie judging by the speed he ran off! Not sure if the attachment works....

Welcome Home!

Apologies for the blog silence. We've had a good excuse, we've had an absolute roller coaster ride since the last entry. Sylvie finally escaped the neonatal unit and came home yesterday afternoon - hurrah! It was touch and go several times whether or not that would be possible. Her feeding tube came out, then she stopped wanting to feed, she caught an eye infection and we were warned that it would take a miracle to get her home this week. Then with just a few days notice she and I were booked to room in for two nights in the Transitional Care unit. She was given the go ahead to go home yesterday by the Unit and the paediatric consultants after she fed well for 24 hours. Her weight is still up and down, not by much, around 60g, and her feeding is erratic but these problems should hopefully even out now that she's home. She will have to see the consultant before Christmas to have the once over but if that goes well she should then be treated like a normal child. We are now getting used to having a wee one about the place, passing each other on the landing in the middle of the night between doing feeds etc. Joe has been giving her lots of kisses and pointing out her nose for us, just in case we didn't know where or what it was. Simon had been very busy behind the scenes sorting out the cleaners to give the house a once over before we came back, balloons had been delivered and thank you presents ordered for the nurses.
The health visitor came today and we'll be visited regularly by them for about a month to make sure she's ok. We went into Kingston today to do some shopping and try out the sling and that trip went very well. I don't think I made it out of the house for a fortnight when I had Joe but after three and a half weeks of sitting in the hospital I've been craving fresh air, new clothes and shopping!
Simon has been trying to write his best man's speech through the middle of all this and has the wedding rehearsal tomorrow, followed by a rehearsal dinner in the evening. His wedding suit has arrived but he hasn't even had a chance to try it on yet. Phyllis and Gordon are arriving tomorrow to help look after Joe for the weekend so hopefully that will all go well too.

On the move again

Sylvie was moved again yesterday from High Dependency to the Low Dependency Room. She needs to consistently put some weight on and regain her strength so that she can feed consistently without the tube. The opthalmologist was called this morning as the doctors were worried that her pupils were not reacting quickly enough to light. The consultant opthalmologist gave her eyes a structural all clear but we will need to monitor her gaze for the next six weeks, if there's a worry that she can't follow movement or sound with her eyes then the opthalmologist will want to re-examine her. Just one thing after another at the moment. Emma, Sylvie's nurse weighed her this evening before her feed and she's put on 60g so up to 4.18kg - that means she has another 60g to get back to her birth weight.
Sylvie and I were visited in the unit yesterday by the chief obstetric consultant to apologise for me being discharged from hospital so quickly and my experience in general! An apology from the NHS, wonders will never cease! Sylvie and I are going to be a teaching case apparently and when the chief read our notes she came straight over with her minions and has invited me back to the hospital to discuss everything with her once Sylvie is safely at home. The nurses were stunned at the visit and I really don't know what to make of it all. I had felt very positive about the whole labour and delivery experience and certainly hadn't complained to anyone about anything. Can't fault the care that Miss Sylvie has received either, far from it. She asked for us by name so we hadn't been mixed up with anyone else either. I gave a glowing report of Hawah and the NeoNatal Unit staff so hopefully they'll be given credit where it's well and truly due.
Mum met Sylvie for the first time yesterday when she popped in for 5 minutes before taking off to Frome.
Tom's new album Life Tracks is out - Christmas is coming folks, put it on your present list! - and the album launch is on Thursday at the Big Chill House, we're buying our copy tomorrow and are looking forward to hearing it.

This ward aint big enough for the both of us...

Sylvie was moved from the intensive care unit into the high dependancy room on Thursday evening. The NeoNatal Unit is completely full at the moment, none of the babies are particularly sick but they all need various degrees of extra help at the moment. Sylvie is being fed at three hourly intervals and they are trying to avoid using the tube. The tube was taken out on Friday afternoon but the nurses put it back in on Friday night as she was so sleepy they couldn't really wake her to be fed. The antibiotics courses have now been finished and she's being monitored for the next 24 hours to make sure that her infection markers don't rise. I've been feeding her three times a day and she seems to be taking to it quite well, doing it at her own pace as all newborns do but because we're still in hospital you can sometimes feel that you're being checked up on and that their standards are way higher than it might be were you at home on your own getting on with it. She's going to be weighed tomorrow and that will also play a part in decisions about her future care. Fingers crossed but we've learned to take each day as it comes and not to get carried away with the H word.
Mum arrived on Thursday and has been a great help entertaining Joe while we've been going in and out to the hospital. Simon took him to a Dads only playgroup this morning for the first time, I've been chuckling imagining them all singing Twinkle Twinkle in deep voices!
Our new cleaners started on Wednesday, hallelujah! They work as a pair so they're finished even more quickly and it was so nice to come home to a spotless house. Tomorrow we're going to the Richmond NCT fair to have a mooch around.
Big thank you's to Meg and Claire who babysat for us this week while we went to see Miss Sylvie. We feel so lucky to have met so many kind people since we moved to Teddington. Funnily enough with the postal strike the first bits of post to arrive came from Australia and Hong Kong! The prize must go to Ez though who despite being on the other side of the world in Sydney managed to have a box full of delicious cakes hand delivered from St Margarets just as I was making a cup of tea! It truly is a case of who you know Ez, thanks very much! Thank you to all of you whose cards and presents have made it through the postal chaos! Its very kind of you to think of us and we really appreciate all your support.

ICU baby...

Haven't given a Sylvie update for a while. She's doing really well now and since our last post has continued to come along in leaps and bounds. Joe has been in a couple of times to give him his seal of approval although we're not sure if it was just the beeping machines that got him excited! He has given her a few gentle pats and is quite curious about having a good look at her. Pauline gave him a lovely teddy bear on his first visit and Sylvie had a little toy for him too although he's taken more of a shine to the rabbit in her cot that the next door neighbours gave her!
Her tummy tubes have been removed and she began to take milk at 1ml per hour on Saturday. She is already up to three-hourly feeds at the maximum dose and nurses have been trying her with bottle feeds as well as breast feeds when I make it in to the unit. She is still having antibiotics into her foot as she has a pressure sore on the back of her head from when she was sedated so they're being cautious about that. Her antibiotics will be given until the 12th and then they will monitor her without them for 24 hours before they decide if she needs another course. She is bruised like a little pin cushion from all the needles but is coping with it all very well. Her colour is also back to normal so she's a lovely pink colour. The nurses have also given her a dummy so that she can practice her sucking as well as comfort herself between feeds.
She is in a normal hospital cot now, not the huge all singing and dancing bed that she had before and is the oldest fixture in the ICU. She's had some new room mates over the week, mostly little preemies, so she gets lots of cuddles from the nurses because she's not as delicate as the others.

Sylvie's progress

Sylvie had another good day today. Simon got to have his first cuddle today and she gave him the cuddling seal of approval. I also had two more cuddles but its so hard to put her back in the cot. We changed another nappy, this time without supervision. One of the tubes going into her cord was taken out this afternoon, there are so many, can't remember what this one was for! They have also begun to put little t-shirts on her but they need to have buttons down the front so that they can get access to the monitors and tubes so we'll have to stop by Mothercare in the morning as we have thousands of vests with poppers but no t-shirts.

She is quite shaky which is part of the withdrawal from the morphine and another painkiller or antibiotic which begins with a V - again can't remember the name, but this should right itself once she gets it all out of her system. Her liver function is being monitored at the moment to decide the right time to start introducing her to colustrum then milk. She will only be given absolutely minute quantities to begin with so progress may be very slow and if her tummy reacts to the milk they will stop giving it to her.

The nurses in ICU are fantastic and we already have our favourites! Debby is one of the night nurses and when I phone in the wee small hours she puts the phone up to Sylvie so that I can hear her breathing and she can hear my voice! She also gives her lots of cuddles. Tracey looks after Sylvie most days, and always explains everything fully for us. Pauline is the parent liaison officer, she is a volunteer. She takes photos of Sylvie every day and left a little photo album for us today, she makes little cards and lots of thoughtful stuff for us to keep as a record. She also organises the baby blankets, knitted by volunteers, makes tea for everyone and is so super-kind to everyone it's overwhelming! She was a 27 week baby and all four of her children, now grown up, were cared for in the ICU.

Joe's busy week

Joe has had a busy week - spending extra time at nursery and spending a day with the bigger boys - he now won't sleep in a cot at nursery and sleeps on a floor mat instead. Joe had a great day with Evie (and Mark & Vic) on Sunday - he got in touch with his feminine side in Evie's pink trousers, made 'toast' with Evie in the wendy house, and apparently Evie insisted that Joe was present in person before she would use her potty. Potty! Before Sylvie was born we also took Joe around the Henry Moore exhibition at Kew gardens in the pooring rain.

Joe's words (in approximate order of first being spoken) are currently:

Hiya (with hand pressed to ear in imitation of phone)

Hello

Bye-bye

Nana (banana)

Cat

No

Duck

Tea

Hot

No

Bird

Roar (like a lion)

Mummy

No

Daddy

Down

Up

No

'Hats off' to Sylvie

Wow! What a day. We arrived at the hospital this morning and the Consultant announced "Ah, Mrs Haines! We have fixed your daughter!" Sylvie was lying, unrespirated, no hat - Niamh didn't recognise her and thought she'd been moved.

We sat and watched Sylvie for a long time, very excited about her just breathing for herself, seeing her hair, seeing her eyes (blue-grey).

We then helped to wash her hair.

Who does she look like? Niamh thinks she looks just like Joe when he was born.

And then, finally, after 4 days, Niamh held Sylvie!

We didn't realise quite how big Sylvie is until I saw Niamh holding Sylvie - 9lb6oz, 55cm - she's a giantess!

Well done Niamh!

Just a short note to say how wonderful and strong Niamh has been. From her waters breaking at 12:30 am Saturday, to Sylvie being born at 11:50 am, Niamh was strong and brave and (without going into details) pushed Sylvie out the traditional way. Any man who has been through something similar will know how awe-inspiring (and scary) it is. Any woman - well, hats off to you.....

Sylvie being ill was the last thing we had thought about. From being born and placed onto Niamh's stomach it must have been seconds before she was whipped off, into the best care of course.

We'll keep you posted.
Simon

Welcome to Sylvie

Our beautiful daughter Sylvie was born on Saturday 29 October at 11.50 a.m. weighing in at an impressive 9lb 4oz! She looks just like Joe did when he was born, full head of hair but is taller than he was, 55cm long.

Unfortunately at some point during delivery she inhaled some meconium which has coated her lungs making it very difficult for her to take in oxygen. She was taken to the ICU in the Neonatal Unit at the hospital almost immediately where she has been ever since. She is sedated and on a ventilator. Her condition is poorly but stable. She has tubes to clear her stomach fluids, tubes to feed her, tubes to do everything! We can't really touch her at the moment, her eyes are kept shut to stop them drying out so we don't even know what colour they are. Because she is kept paralysed she is retaining a lot of fluid, especially around her eyelids. Simon and I got quite a shock last night when we went to see her, she looked like she'd been boxing. She is slightly yellow too but not jaundiced so far. Her cathater was taken out today so that is a positive sign.

We are exhausted, physically and emotionally. We don't know how long this situation will go on for. We just have to take everything one day at a time. Mark and Vic have been fantastic, they looked after Joe all day on Sunday so that we could stay at the hospital, cooked us lunch and dinner, babysat last night so that we could go in and say goodnight when Joe had gone to bed. I can never thank them enough for what they've done. Conor and Liz were also wonderful - dropping everything (pints I think) at 1am on Friday night to rush from Dulwich to Teddington to babysit Joe. We went straight to Kingston hospital and Conor & Liz got Joe up and played with him all day. Huge thanks.

Joe is at nursery four days a week for the time being and he's been wonderful. Its so nice for us to spend time with him, little monkey that he is, after being at the ICU surrounded by babies that can fit in the palm of your hand. Whenever we have news we'll put it on here but there might not be any change in her condition for a long time, it's just a waiting game from now on. Thank you for all your offers of help, if there's anything we think you can do for us we will let you know, just appreciate that at the moment we can't really plan anything past the next 24 hours.

Thanks for all your support.