And It’s Goodbye From Me

Hi everyone,

I have been meaning to do this last blog post for some time. I wanted to do one last round up, say one last thank you, give you all one last update on the twins and then get back to my ‘proper’ blog. Having two blogs on the go has proved challenging and I will be happy to have just the one to focus on if I’m honest!

Firstly, our final totals from the triathlon and the subsequent raffle are quite fantastic as you can see.

The triathlon was one thing but the amount that we raised from the raffle exceeded all of my expectations. In total, we raised £2,325 for the special care baby unit at The Royal Surrey County Hospital and I, for one, could not be prouder.

The triathlon seems like a long time ago now and there are just a handful of the raffle prizes to be given to their owners and then it’s all done.

Once again, huge thanks to absolutely everyone who helped and supported us in any way. Thank you to my triathlon team Harry and Jack and thank you to Rosie who did so much to help me with the raffle and who was largely responsible for the amazing array of prizes that we were given.

Thank you to everyone who sponsored us and thank you to everyone who bought tickets for the raffle and who donated prizes.

Now, Kirsty has said that it’s ok for me to update you all with how the family are doing so…Daddy is doing great despite being very fed up about the England football match last night (like a lot of us I would imagine!). He continues to be a caring and supporting husband and a loving and hands on Daddy who adores his wife and his children. There is no doubt that his babies love him and Phoebe is most definitely a Daddy’s girl. When all else fails and she won’t settle, a cuddle from Daddy does the trick every time. Well done Daddy! You know how I feel about you and how far you have come. You are fantastic!

Mummy is doing incredibly well. She has bounced back from her self doubts and exhaustion and proved to herself that she CAN do this, that she IS maternal and that she is a brilliant Mum. She takes on everything that is thrown at her and she keep on going. Her love for her babies is there for all to see and their love for her is obvious. Sam’s smile when he sees her is a joy to behold and the way that she has handled Phoebe and her feeding proves beyond any doubt that she know your babies better than anyone. I never cease to be amazed by her and I couldn’t be prouder of her if I tried. At the moment she is struggling to get around as she has a bout of sciatica but you wouldn’t know it unless you saw her!

Young Sam is still a chunky monkey with a smile for everyone. He rolled over yesterday for the very first time and it won’t be long before he is on the move. Both he and his sister sleep through the night once  Mummy and Daddy have read them a bedtime story and, very soon, the family will be moving from their one bedroomed home to a two bedroomed home and the babies will no longer be sharing their bedroom with Mum and Dad. That is going to make so much difference to the lives of them all.

Last, but not least, my precious Phoebe…our little fighter and our little diva! It has become obvious to all who know this little lady that she is one very determined and strong willed cookie who will only do things when she wants to and when she is ready. This might sound ridiculous to say about a 5 month old little girl with various needs but I promise you it’s true. I have seen it for myself.

Anyway, Phoebe has been without her feeding tube for over a week now after pulling it out for the umpteenth time and after Mummy and Daddy decided to see how she would get on without it. Remember that this is the baby with a cleft palate who refuses bottles completely and who has had severe reflux. So the decision was not taken lightly. However, the day after the tube came out Phoebe took 90 mls from a bottle that she previously hated and the first bottle that she was ever offered all those months ago. She had never, in all of her 5 months, taken that much from a bottle. Later that day she took another 90 mls and then 100 mls.Yesterday she took 130 mls from a bottle in 10 minutes! The reflux seems to have all but disappeared and the almost constant sickness has abated.

Yesterday I took Mummy and the twins to see family in Milton Keynes and we didn’t have to worry about where the nearest hospital was in case she pulled her tube out, we didn’t have to worry about taking syringes and testing strips to use before every feed. We didn’t have to fight with her to take 20 mls in half an hour from a bottle before then battling to get the remainder of the feed down the feeding tube and then not moving her for ages just in case she threw the whole lot up again. It was a pleasure for me so goodness knows how it felt for Mummy.

So, for now, things are on the up for this special little family. The road ahead is long and there will be plenty of challenges for all of them, not just Phoebe, to face in the future but with the continued support and love from family and friends I know they are going to be just fine.

I am also allowed to share a few last photos with you all. Goodness knows how I will choose which ones!

 

Quick photo explanation:

They show the first time Phoebe drank anything from a bottle at the age of 5 months, Daddy’s 1st Father’s Day canvas, bedtime babygrows, Daddy’s 1st Father’s Day morning surprise, wonderful smiley Sam, pics from sensory play, Phoebe without her tube, Sam and his tongue and Phoebe actually reaching out and touching the lights in sensory play which she hadn’t done before.

That’s it from me and this blog. I am, as you can tell, a very proud Mummy and Nanny, proud of all of my wonderful family and full of love for each and every one of them.

Thank you for reading this blog and for all of your lovely comments over the past few months. To know that anyone ever reads any of my ramblings always amazes me. Your support has meant the world to us.

Thanks again and love to you all.

Nanny xxxxxxxxxxxxx

Glory days!

Hi folks.

The Guildford triathlon is done and dusted. Phoebe and Sam’s Dream Team rose to the challenge of a 500m swim, a 23 km cycle and a 5.5k run and lived to tell the tale.We couldn’t be happier!

As expected, I slept very little the night before. At 5.30am I got up, had my breakfast, packed my bag and set off for The Surrey Sports Park, the venue of our challenge. I registered. We were team 8. I picked up our chip, rang the others to let them know what they had to do and set off to get ready for my swim. I wandered around aimlessly for about half an hour before settling on my plan and got changed. I stood outside in my swimming costume and google…a sight indeed!…and joined the group of swimmers with a slower time than the elite athletes. We were setting off early and at 20 second intervals. I spoke to the people either side of me and told them to pass me if they found I was holding them up once the swimming started but they were all in a similar situation to me….expecting to swim slowly!

As the queue got shorter and I got to the front I just took a few deep breaths and, when my turn came, plopped into the water and prepared for my swim. I was nervous, excited and a bit scared but I had to get on with it. 30 minutes was my target so I just tried to swim steadily. My practice swims had been done in a 25m pool but the swim proper took place in a 50 m pool so we had to swim 10 lengths. I thought I would find it harder but I didn’t. I got to the last length, took a deep breath and headed for the steps to get out.

I clambered out, found my glasses that I had left on the side and set off to the transition to find Harry who was waiting for me to hand over the ‘baton’ to him so that he could set off. I had no idea of my time. I just wanted to get going.

It was a little strange running outside in my swimming costume  with goggles on my head and with nothing on my feet at 8 o’clock in the morning but it was also a little exciting! Let’s not think about that too much! I found Harry and handed over.

Harry set off and I went and got changed, feeling mightily relieved that my part of the challenge was over.

By this time Phoebe and Sam had arrived with Mummy and Daddy and Nanny and Grandad. Harry’s mum also joined the band of supporters so we gathered by the transition area and waited for Harry’s return. It was chilly out there. in a much quicker time than expected, Harry was seen in the distance. Cue much cheering and clapping as he got closer. Jack moved into position in the transition area and we were ready to go again.

Jack has been full of cold this week and I was worried about him running. He was determined to do it so he set off on a mission. Waiting for someone to appear in the distance when you are worried about them is not a pleasant experience but, eventually, there he was…running style not pretty and obviously struggling…but he was there! Cue more cheering and clapping at the finish line.

And that was it…it was all over. We had done it. We had completed a triathlon between us and we were thrilled.

Our times were amazing and exceeded our expectations. We actually finished 9th out of 10 relay teams which is pretty damned good for three inexperienced but dedicated people.

My expected 25 min swim actually took 18 minutes, Harry’s 1 hour 20 predicted cycle actually took 1 hour and 1 m in and Jack’s predicted 30 min run took 28 minutes with two vomit breaks apparently. Quite fantastic!

After it was all done we went and got our medals. Mine is going into Phoebe and Sam’s memory box along with my t shirt.

Phoebe and Sam slept through the whole thing but it was so special for us to have them there with Mummy and Daddy.

This has been a real challenge for us. When I initially signed up for the triathlon I intended to do it all myself but it soon became apparent that I didn’t have the time or the courage to prepare and take it on, hence the team effort. Jack and I often pair up for events but it was a first for Harry and he did brilliantly. I’m so grateful that he was able to step in and help out.

As Phoebe and Sam have grown and with the issues that the family have had to face and the challenges that lay ahead for Phoebe, staying focused on this has been a struggle for me at times. However, even when I was sick with worry about everything, the image of those little ones popped into my head and I knew that I had to do it for them. I want them to hear about it when they open their memory box when they are 18 and wonder what the medal and the t shirt are for. I want them to hear about the number of fantastic people that have supported us all and I want them to know that, although we were raising funds for scbu, we were doing it for them and their Mummy and Daddy.

As I type this I am beyond delighted to be able to say that we did, indeed, surpass our revised target of £1000! Our current total is:

£1,220 …..£1,446.75 including Gift Aid

Heartfelt thanks from Harry, Jack and I to every single person that has sponsored us and donated online or otherwise. It’s not too late to donate if you feel so inclined.

http://uk.virginmoneygiving.com/team/phoebeandsam

On June 12th we will be holding the draw for Phoebe and Sam’s Raffle. We hope to have another £500 heading to the scbu from that too so we are doing well I think. I’ll keep you posted!

Now, it wouldn’t be like me if I didn’t end on a soppy note would it?! I have thanked everyone profusely through my various blogs, emails and so on for their support of our team and of our family but I haven’t thanked the most important people in all of this.

Kev..Daddy…thank you for being a wonderful man and for looking after and loving my daughter and your children so, so well. You have a been a tower of strength over the last few months and I have watched you grow in confidence and stature every day. The babies are very lucky to have you for a Daddy.

Sam…my smiling boy…you are a delightful little chap. Thank you for putting up with Nanny Fish constantly chatting to you and picking you up for cuddles. I just can’t help myself. You are adorable.

Phoebe…our little princess…I can’t even type about you without crying. You, young lady, are one tough little cookie. You have made so much progress over the last month or so. It is a joy to hear you cooing and it is always amazing when you smile. Just as for your brother, thank you for putting up with Nanny Fish constantly being in your face and chatting to you….or talking loudly in your ear! You are amazing and you are beautiful.

Last, but not least, Kirsty….Mummy…my darling girl. What can I say that I haven’t said before?  You are an inspiration to so many people. You are strong and brave and kind. You are a wonderful Mummy to your children and I am immensely proud of you. You have come so far in the last few months. You have an inner strength that many people would like to have and I think your daughter has got the same. Thank you for putting up with me and my constant nattering and fussing. Thank you for not telling me to shut up! Thank you for letting me share a part of your story via this blog. Thank you for Phoebe and Sam.

Love Nanny xxxx

The Final Countdown

Well, folks! Here we are. Less than a week to go until we attempt The Guildford Triathlon, an event that none of the three members of our team have ever tried before. I don’t know about the other two but I am now more than a little apprehensive. Having spent the last weekend in Madrid eating paella, drinking sangria and going to a fantastic Bruce Springsteen concert, swimming, running and cycling have not been at the forefront of my mind. There was even a small pool at the hotel that we stayed in but I never even saw it. I had the best of intentions I promise!

As you know, we are fundraising on behalf of our gorgeous twins Phoebe and Sam and their Mummy and Daddy for the Special Care Baby Unit at the Royal Surrey County Hospital. A look back back at my earlier posts on this blog will explain why. We started off aiming to raise £500 but, amazingly, we have already raised that much due to the generosity of family and friends and so we have upped our target to £1000. I know it’s a big total to aim for but I do think we will be able to do it.

A little update for you about the family – Daddy is having a phased return to work after being a legend and looking after the whole family for a few weeks, Mummy has regained a lot of her lost confidence and has managed to get some rest and so is feeling brighter and more positive. I can’t tell you how wonderful it is to be able to speak to my daughter on the phone and for her to sound like her old self. Things were very difficult for a while there but we all rallied round and did what we could to help out. With the support and advice of professionals and with the love of family and friends behind them these guys have made it through to fight another day.

As for the babies…..what can I say? I haven’t seen them properly for 2 weeks but I am sent pics and videos and I can see the change in them both. I’m due to visit them all tomorrow and I can’t wait!

Sam is already in clothes suitable for a baby twice his age. He is becoming more and more vocal and both he and his sister are going to be trying solids for the first time later this week if all goes to plan. He is a proper little charmer and smiles and ‘chats’ happily whenever anyone talks to him. His smile is infectious.

Phoebe appears to be coming on in leaps and bounds. Her reflux is more stable. She is able to hold her head up and she has discovered her hands. She is also becoming more chatty.

Both babies now sleep through the night which is a massive bonus for Mummy and Daddy. Both babies now sit up in little chairs which is cute. This is massive for Phoebe especially as it means she is using her muscles and holding her head up on her own. Both babies also go to a sensory session weekly where they are stimulated by various lights and experiences. This will be a huge help for Phoebe who, if the photos are anything to go by, reacts very positively. See for yourselves!

 

I can’t tell you how incredible it is to see Phoebe holding her head up like this. I could cry.

Anyway, as you can tell, this family…and young Phoebe in particular… have been on quite a journey over the last 4 months or so. I’m so incredibly proud of my daughter and her husband for staying so together and for loving each other. I’m full of love for Phoebe and Sam – so much that I could burst really. I’m thankful for the never ending support and love shown for the family by family and friends who really have been incredible. I must also thank my hubby and my own children for keeping an eye on me and stepping in when they could see that I was overly worried and struggling to know what to do for the best.

None of us know what the future holds and worrying about it isn’t going to change anything. That is a lesson that I have to be reminded of from time to time. You really would have thought that I would have got it by now.

Think of us on Sunday as we embrace our challenge. I’ll be swimming at 7.15 am. Ouch!

From me and my team and from Phoebe and Sam and their Mummy and Daddy, thank you so very much for everything…for sponsoring us, for buying raffle tickets, for donating prizes, for providing a shoulder to cry on, a listening ear when needed. We are all incredibly grateful.

Love Nanny xxxx

http://uk.virginmoneygiving.com/team/phoebeandsam

 

 

 

 

 

 

Thank you!

So…..2 and a half weeks to go before the big day. Yes, that’s 2 and a half weeks to go before we take part in the Guildford triathlon. We are already over half way towards our increased target of raising £1000 which is fantastic. 

Harry has picked up the bicycle that he will use for his leg of the triathlon and has been out for some training. 

I have not increased my swimming sessions despite the best of intentions which is a bit rubbish but there is a lot going on at the moment. I can only do what I can do.

I have finally found somewhere that is able to put photos on our team t shirts so I dropped off the shirts yesterday and they will be ready to collect in the next week or so. I was not very happy when I was presented with a bill for £75 I can tell you. Yes,  that’s £75 to have a photo put on 5 t shirts. The things I do for charity!! I am sure there is a way that I could have done the t shirts myself but I don’t have the time or the inclination to be honest. I just want the shirts to be ready for the day and I want them to look good. So, our team shirts will have this gorgeous photo on the back of them…

As promised, I did manage to get a couple of photos of the team a week or so ago so here we are….meet Uncle Jack, our runner, me (Nanny) the swimmer and Uncle Harry our cyclist.

Rosie and I are now fully involved in organising the raffle to raise extra funds for SCBU at the Royal Surrey County Hospital. People have been incredibly generous. We have received donations of prizes from supermarkets, entertainment venues, local shops, a school, friends and family. Our initial target for the raffle was to raise £100 but we have already passed that. We also have more prizes than we anticipated so we will need to look at increasing the target I think. We are doing all we can to promote both the raffle and our triathlon challenge so please do feel free to spread the word and like and share our various social media posts and blogs.

The link for the triathlon fundraising page:

 http://uk.virginmoneygiving.com/team/phoebeandsam

The link for the raffle fundraising page:
http://uk.virginmoneygiving.com/team/fagantwins

As for the family that this is all about, I can report that there have a been a few more positive days after a pretty miserable time. Mummy is feeling a little better and more positive, Phoebe, after another bout of reflux related vomiting and pain following an ill-advised increase in her high calorie formula, seems more settled, Daddy is proving himself to be a total star and general all round top bloke and Sam is a chunky monkey full of smiles and gurgles who can really make it known when he isn’t happy or is hungry by screaming very loudly very quickly! 

Things are changing all the time for the family and they are having to face challenges that they never imagined. The love and support that they have been shown over the last few months by so many people has, at times, been overwhelming for both Mummy and Daddy. I know this because they have told me. They don’t understand why so many people care about them all and why people have been, and continue to be, so kind, caring and generous towards them. In this life I believe you reap what you sew. If you are kind and treat people with respect then you will, in the main, be treated that way yourself and, most certainly in my daughter’s case and I’m sure in her husband’s too, they have both been kind, considerate, loyal and caring. People appreciate those qualities that can be hard to find in others sometimes. I think that is why people care and want to help and support these guys.

As both Mummy and Nanny I would just like to thank every single person who has picked up the phone, messaged, emailed, texted or provided an listening ear and moral support in any way to the family over the last few weeks especially. Thank you for being great. Thank you for being there and thank you for your continued support.

Love Nanny xxxx
 

Something Inside So Strong

Hi everyone.

Just a quick update for you.

I’m typing this up on Saturday morning which means that 4 weeks tomorrow the day of the triathlon and the culmination of our training and fundraising will have arrived. That’s a bit of a scary thought. When I start these fundraising efforts of mine I tend to sign up for the event months and months in advance and then get spooked when,all of a sudden, I realise  that the day is almost upon me. This is no different! 4 weeks to get my training done, 4 weeks to decide which of the various styles of breaststroke that I have attempted suits me best, 4 weeks to get the t shirts printed with a team photo, 4 weeks to panic basically. Bring it on I say. I know I can do this, I know our team can do this and I’m excited to prove that I’m true to my word and will give this the best shot that I can.

However…..always a however……despite my best efforts I have not increased my swim sessions. It’s been difficult to fit everything in to be honest. That must and will change. I did go for my usual Wednesday night splash about where I tried to swim more under the water and where I practised gliding through my breaststroke. I swam another 30 lengths but didn’t push myself to go as fast as possible. As usual, it’s more important to me to do the lengths I need to do and take as long as it takes rather than try to go too quickly, get tired and not finish. Tortoise and the hair and a bit of the Taurean stubborn streak I think.

I have had more positive responses to my request for raffle prizes and I’m thrilled about that. I am not sure if I am going to be organised enough to have finalised the draw to coincide with the triathlon as I had expected to but I promise that I will get on top of it and get a plan in place as soon as I can. When I have organised it properly I will be shouting about it from the rooftops so that everyone has a chance to take part. Of course, all funds raised will go the SCBU at Royal Surrey County Hospital just like the triathlon fundraising total.

I hope that I will be able to update you with a team photo in the next blog. On Monday our cyclist, our runner and I will be in the same place at the same time so it will be an ideal opportunity to take a photo or two. There is an outside chance that the babies and their Mum and Dad will be there too and if I can get a photo with us and Phoebe and Sam all together that would be fab. Fingers crossed.

I can’t go into much detail about what is currently happening with the twins and their Mum and Dad. All you need to know is that it’s been a very difficult, very worrying week. Phoebe and Mummy are both poorly. Everyone is exhausted and the reality of just how difficult  life can be sometimes seems to have hit home. We are all doing everything we can to support the family until they are back on an even keel again but these things take time. One thing is for sure, my daughter is strong and so is Phoebe. Kirsty has proved that over and over again throughout her life and I have no reason to doubt that she will come back fighting again once she is rested and has her confidence back. Pheobe is her mothers daughter. That little poppet has already shown us her strength and resilience in the 3 months that she and Sam have been with us. Stay strong little one. Stay strong Mummy. We all love you more than you know.

Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

Hut Happiness, Bouncing and Babies

Good evening all.

It’s been a busy week again. I haven’t seen the twins yet this week but that will be resolved tomorrow when Pheobe has two more hospital appointments in the afternoon – one with audiology and one with the dietician – and Mummy has asked me to accompany them. I also spend most Wednesdays with Mummy and the twins so the hospital appointments have fallen nicely this time.

I can tell you that the twins had their second lot of jabs today and that they were both weighed. Both have gained weight which is fab news  especially following the feeding difficulties that young Phoebe has been having. 

The triathlon is a mere 6 weeks away and is all starting to feel very real. As a consequence, and because I have had a little more time to spare, I have been trying out different types of exercise over the last two days. Yesterday I went trampolining with the runner in our triathlon team and we bounced ourselves silly for as long as we could. I’d forgotten how exhausting trampolining can be. We had an hour session and after half an hour we were both pooped. We stopped for a drink and a breather and then returned to bouncing. We also attempted the foam pit and tried shooting hoops while bouncing too. I was rubbish at both! We didn’t try out the dodgeball area. That would have been too much for me even if I knew what I was supposed to be doing!

   
 
Today saw me head to my beloved beach hut which is my pride and joy and my solace when I need to clear my head and relax for a bit. I haven’t had the chance to get there for so long. I haven’t been there since the twins were born that is for sure. It was absolutely wonderful to be there again.

   
 
I was given a wetsuit by one of the neighbouring hut owners last year and I have never tried it out. Today, despite the water being  very chilly, I decided to take the plunge. I put on the wetsuit and headed for the water. Yes, I went in the sea. Yes, I swam..eventually!…Yes, it was very cold and yes, I am mad. But it was exhilarating and I was so pleased with myself when I had done it. I know it’s not a lot but it is a form of exercise, it was different and I felt it was an achievement of sorts. Every little helps as they say.

   
 
On to fundraising matters. I checked our page today and was amazed to see that we have already raised over £500. Isn’t that incredible?! And we still have 6 weeks to go. See for yourselves……

  
Our target is now £1000 and, do you know what, I think we might do it. I think we might actually raise £1000 for SCBU. 

The raffle that I mentioned in the last blog post is gathering momentum. We now have donation prizes  from 2 supermarkets, offers of flower arrangements and now the incredible offer of 2 tickets for a Disney park valid for 1 year! How amazing is that? I am hoping to get a few more prizes guaranteed and then I will start to organise everything properly. 

The other exciting thing….. for me anyway….is that one of my favourite singer/songwriters, Frank Turner, retweeted the details of our fundraising page on his Twitter account. He did the same for me last year when we completed the Surrey Three Peaks challenge. What a good man😊👍😍

  
Everything is going in the right direction with this challenge and I am beyond thrilled and grateful for the support that we have had from so many people. Tomorrow evening, after my time with the family, I will do my usual Wednesday evening swim and I won’t have to scare you with the after swim photo as I am posting this a day earlier than usual. Lucky for you!!

Please do let me know if you know of anyone who would be able to donate a prize of any kind to the raffle and please feel free to share this link and spread the word about our challenge.

Have a great week folks and thank you for your support for  and of myself and my wonderful family💗💙

Oh, and I can’t go without mentioning that one of my daughters and her husband completed their first marathons at Brighton on Sunday. Well done guys!! Xx

   
 
  
Night night from Phoebe and Sam 
Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

Tougher Than The Rest

Hi folks and thanks for coming back for more!  Yes, more ramblings, more unloading my fretting mind, more blowing my own trumpet about my weight loss and exercise. Actually, that makes this blog sound dreadful and I really hope that you don’t find it too much to read. Thank you from me anyway for at least taking the time to check in and read this far even if you don’t read any further.

Firstly, the triathlon training update. Our cyclist has invested in cycle wear and is concentrating on building himself up for the big day. He doesn’t have a spare ounce of flesh on his body and he definitely cannot afford to lose any weight. High protein meals and snacks are high on the agenda at the moment because he is going to need a lot of energy to complete the 20+ km bike ride in 6 weeks time. Our runner now has use of a home gym which has been set up in his living room so there is no reason for him not to train and keep motivated. I have had my usual Wednesday evening swim which was good this week. I wanted to time myself for my 500m (20 lengths of the local pool)  but got sidetracked by thinking too much and lost count of the lengths that I had done so I either swam 21 or 23 lenghts (that’s 525 or 575m) in 23 minutes. Whatever the actual distance, it was hard but it was a little faster than I had swum before so I was very happy. I then swam another 10 lengths leisurely and enjoyed a more relaxing time while my swimming buddy swam her 24 lengths and continued to up her game in pursuit of health and fitness. Go Rosie! You keep me going when I really don’t feel like I can do it. Thank you xx

Prepare for another post swim horror pic but it does prove that we did it….

Secondly, the proposed raffle idea that I have been thinking about….I have already received confirmation from Sainsbury’s and Tesco that they will provide me with a prize to raffle and my son in law and a family friend have offered to provide hanging baskets/floral displays too which is fantastic. This means that there will definitely be a raffle and that I definitely need to get my bottom into gear and start organizing it properly. The logistics  of selling the tickets, collecting the money for tickets, actually getting the tickets and doing the whole thing properly is important but also slightly overwhelming. If anyone has any ideas please do let me know. Also, importantly, if anyone reading this would like to give me a prize to raffle, if anyone reading this works for a company who could provide a gift to raffle, please do let me know. Thank you.

Thirdly, the other day I gave a little bit of thought to team t-shirts for the triathlon. i enquired about having t-shirts made up with photos on and the cheapest quote I could get was £80 for 12 shirts. I then thought that I should contact the fundraising dept at the Royal surrey County Hospital to see if they had any t shirts to spare and yes, they did!! I don’t know why i didn’t think of it before and so, today, these arrived….

….5 t shirts bearing the hospital logo. One each for the three of us and one each for Mummy and Daddy. All I need now is a suitable photo of the twins to get put on the back of each shirt and we will be sorted.

Finally, and probably most importantly in all of this, the twins and their family. It’s very difficult for me to use the right words and to keep a lid on my emotions when I type about the four of them, especially at the moment when things are a bit up and down. I could type away for hours about my thoughts and feelings and about the almost hourly highs and lows that the family have to deal with every single day so I will try to be brief, succinct and not overly personal…that’s the bit I have trouble with.

Overall, the family are bearing up. Daddy continues to work and then take over from an exhausted Mummy when he comes home every day. Mummy is wiped out and just about at the end of her tether which is totally understandable when you consider what she has to do and to deal with every day. Lack of sleep is not helping and it’s impossible to sleep, no matter how exhausted you are, when your mind is racing and full of anxiety and worries. I know. I have been there.

Sam is doing fine as ever. He’s such a lovely boy. He is feeding really well, often too well and too quickly as the post feed sick shows us! Mummy and Daddy think he is teething and he is as strong as an ox. Long may that continue.

Darling Phoebe is a totally different girly these days. She is  much more alert and responsive which is wonderful. She looks so gorgeous in her array of pink clothes. However, concerns are still there. In actual fact, it seems that her main issue at the moment, her feeding, is not connected to Stickler Syndrome at all but to reflux. The two conditions are not related. As a consequence she was put on lactose free formula last week but it really didn’t suit her and made her more sick and uncomfortable than she has been in weeks.

She was then put back onto her usual formula and was prescribed more antacids which have to be dissolved and then put down her tube. The worry of the tube blocking with these tablets was a big issue for Mummy who really felt unable to do it herself. Phoebe has now finally been prescribed the liquid form of the medication. Why on earth wasn’t that prescribed in the first place? Let’s just hope that the medication works because there really isn’t anything else to try. Apparently babies outgrow reflux but to see a little one arching her back in pain and shaking her little head from side to side after 20 mls of every feed is heartbreaking and exhausting for all involved ….and this happens every 4 hours, 24 hours a day, 7 days a week.

However, this week I did take some fabulous photos of Phoebe and many of you will have already seen one of them but I’m going to share it again with you because it is just so beautiful. It makes me smile every time I see it.

Well, there we are. It’s taken me ages to compose this and check it and re read it again and again.

Thank you again so very much for reading this, for supporting the twins and their Mummy and Daddy, for supporting us in our triathlon efforts and for being all round good people. I know I am probably a pain at times and  that I drive people mad but I promise that I only ever do what I do for the right reasons. My heart is always in the right place even if it may not seem like it at times.

Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

 

 

 

 

 

 

A Day At A Time

Hi everyone and welcome to another instalment of this blog which is basically all about me trying to raise awareness of Stickler Syndrome, promoting our fundraising efforts by taking part in The Guildford Triathlon at the end of May for SCBU at The Royal Surrey County Hospital and also to keep folk updated about the general progress of the beautiful Phoebe and Sam and their Mummy and Daddy.

Firstly, Wednesday  evening saw youngest daughter and I do our regular swim. I had spent most of the day with the twins and it had not been the easiest of days. The thought of going swimming was really the furthest thing from my mind and about the last thing that I wanted to do. However, I didn’t want to let my daughter and loyal swimming buddy down and I know that, to do the triathlon and the twins justice, I need to just get on with it so that’s what I did. I didn’t time myself but just made told myself to get the 20 lengths in and then it was done. In the end I swam 30 lengths, adjusted my style of swimming by putting my head under the water more often which seemed to make me go faster, and felt rejuvenated by the time I had finished. Swim buddy Rosie also swam 24 lengths….this from a girl whose target just 4 weeks ago was to swim 10 lengths. She’s a star!

  

I have also been proactive on the fundraising front by contacting businesses and companies to see if any of them would consider making a donation  to our chosen charity. I  posted letters two days ago and I have already had a phone call from Tesco offering their support! They are going to donate a hamper which I will be able to use as a raffle prize. How brilliant is that?! I was delighted and a little overwhelmed to receive that phone call if I’m honest. I could have cried. What a wally!! It does mean, of course, that I will be organising a raffle, and possibly another event, after our triathlon efforts. You have been warned!

Now, onto the twins and their progress. I am delighted and very relieved to say that they were both weighed yesterday and both are doing well. Sam now weighs just under  a stone(!) and Phoebe has gained too and now weighs 9lbs 1oz which is a huge relief following her disappointing weight gain of two weeks ago. I’m sure Mummy and Daddy are very relieved with that news. Phoebe has also had another appointment at the eye clinic where the results were inconclusive. She is very young to accurately assess. Suffice to say we have to go back in 3 months time. 

It’s been a very trying time for Mummy and Daddy and the extra concerns about young Phoebe have made life difficult at times but, one thing is for sure, Mummy and Daddy love those little ones so much and, whilst things must feel daunting and scary at the moment, things will get better. The babies will eventually start to sleep through the night, Phoebe will start hitting her milestones and life will start to return to some kind of normal….although not the kind of normal that they are used to. Those days are long gone and life will never be the same again! A daunting prospect I am sure but an exciting one.

  
Sleeping beauty

  
Handsome boy and we love his shirt!

  
Twins💗💙 10 weeks old

  
Bright lights and bright colours set up by Mummy as a form of sensory stimulation for Phoebe…….who loves it as you can see…….

  
Parenthood is tough. It’s wonderful but it’s tough. Just when you think that everything is going ok, something else comes along to remind you to never take things for granted. Parenthood is an emotional roller coaster at the best of times and even now, some 32 years after becoming a Mum, I am still learning. Being the parent of a child with any form of additional needs is incredibly hard. I know that from my own experience. The constant stream of medical appointments, the constant visitors and phone calls, the never ending forms and paperwork that need completing, the permanent worry that you aren’t doing enough, that you are letting your children down is always there. However, children, with or without special needs, add so much joy and love to our lives constantly. The worry never really goes away. The worry just changes. As Phoebe and Sam’s Nanny,  I can honestly say that I am in such awe of their Mummy and Daddy….but especially of their Mummy, my own special baby,  my first born. Her strength and determination never cease to amaze me. Her courage and bravery often go unnoticed. She is thoughtful, kind, generous and loving. She is a wonderful big sister and a fantastic daughter. She is now an amazing Mummy too. 

Have a love lovely day everyone.

Love Nanny xxxx
http://uk.virginmoneygiving.com/phoebeandsam

Baby Love

Hi everyone.

Firstly, and most importantly, I owe a huge apology to Pheobe and Sam’s Mummy and Daddy for being insensitive and making an often stressful and difficult situation a thousand times worse by one of my recent blog posts. I am truly sorry and they know that. My public apology , for want of a better phrase, is on my  other blog 

http://www.nannyandmummy.blogspot.com

Moving on, and with lessons learnt, I am here to update you on our latest training sessions and a quick update re the twins who are now 9 weeks old. Goodness me, time flies!

As it was the Easter weekend, and as the twins and Mummy came to stay with us for a few days and Daddy had a break, exercise has been minimal to be honest. I haven’t run at all but Harry (our cyclist) has been hitting the road and running with Rosie who is on her own fitness and weight loss mission and who is achieving fantastic results. They have run despite painful legs and a heavy cold. I (the allocated swimmer of the team) have done little other than my weekly swim. I know that I need to up my swimming sessions and I fully intend to do so. Having said that, Rosie and I went swimming last night and I managed to complete my 500m in 23 minutes which is 2 minutes better than last week so I was very happy with that.

  
I haven’t heard how Jack (our allocated runner) is progressing but I assume no news is good news. At least, I hope so! I really want us to give this event our best shot and to complete the triathlon and feel proud of ourselves and do it for Phoebe and Sam and SCBU too obviously.

Now that the evenings are lighter (and I am lighter too after losing 20 lbs at Weightwatchers since January! ) I hope to be a bit more active. Im not sure what I I’ll do except more swimming but we will see. 

Now, the twins….it’s been another difficult week for the family in as much as Phoebe has pulled out her feeding tube twice over the last few nights which has meant middle of the night trips to the hospital to have the tube replaced, the medication that has been prescribed  for Phoebe for her tummy  issues blocked her feeding tube and so she can’t take that. Therefore, her tummy discomfort at feeding times continues. She is still taking about 40mls from the bottle each feed and the rest of the feed has to be tubed. This happens every 4 hours so there is no time to rest for Mummy and Daddy who are both now running on adrenalin and not much else. Phoebe has good days and sleepy days and no two days are the same with that little girl. The great news is at she hasn’t been sick for over a week and that should mean that she will have gained weight which is really important.

The ever gorgeous Sam is just a joy. He loves his bottle, he loves his dummy and he loves his cuddles. He is such a smiley baby and he is changing all the time. He is adorable and his smile melts my heart whenever I see it. He continues to appear to fit in around his sister but when he is hungry or he wants something….boy do we know know it! He can go from silence to a full pitched yell in a couple of seconds and he has a very loud yell! 

So, our training efforts continue, the babies are progressing in their own ways and at their own speeds and Mummy and Daddy continue to do the very best they can for their gorgeous and much loved children.

I took a few photos at the weekend. You may have seen them before but I will share them again anyway just in case. 

   
Sleeping beauty

 
One of Phoebe’s first proper smiles

   
Mummy and daughter chats

 
Blurry but gorgeous, smile happy Sam

   
Simply beautiful

 
Sleepy boy

Love Nanny xxxx

http://uk.virginmoneygiving.com/phoebeandsam

Happy Easter Everyone!

Morning all.

Happy Good Friday! I feel like I’ve been awake all night. I haven’t really but I’ve snatched sleep in bursts of 2 hours at a time so that’s a bit rubbish. Anyway, it means I have no reason to not update you all with my latest fitness challenges and triathlon news along with a bit about the twins.

Firstly, I am happy to confirm that our triathlon challenge will now definitely be undertaken as a team and not as two individuals. I’m relieved to be honest but a bit disappointed in myself too. I am stubborn and proud and don’t like to let myself or others down. When I commit to a challenge I always like to see it through regardless but I had to be realistic and admit that even I couldn’t do justice to a 500 metre swim followed by a 20 km bike ride and culminating in a 5km trail run. So I now have team mates😊 My son Jack is going to run the 5km, my future son in law Harry is going to do the 20km cycle ride and I am going to do the 500 metre swim.

The event takes place in Guildford on May 29th and I am actually looking forward to it and, now that the team details are a sorted out I can concentrate on my ‘bit’ – the 500 metre swim. You may already have read that I have purchased some goggles and you may have seen a scary picture or two of me wearing them. Well, I have to say that I am really liking them. I can open my eyes under water -something that I hated doing before – and I can now work on my breathing by keeping my face in the water every other stroke. This also seems to give my neck muscles a break too.

This week my daughter and I, who are both on a Weightwatchers plan and who have both lost 19lbs each since mid January- returned to our local pool on Wednesday evening. For the first time I timed myself as I swam the required 20 lengths (500 km). When I applied for our triathlon place I had to enter an expected time for my swim. I had no idea how long it would take me so I put down 40 minutes. I can do it in 25 minutes! Now, I know that’s not fast and I only swim breaststroke , but I’m happy with that time. I’m also hoping that I may be able to swim it a little faster with practise. We shall see. Anyway, here is proof of our Wednesday night swim…

  
Not the most flattering of photos but I don’t care. I’m just happy to be fit and healthy, losing weight and aiming to achieve another first…competing in a triathlon….and hopefully raising much needed funds for SCBU at The Royal Surrey County Hospital where Phoebe and Sam were born back in January.

Last Sunday my daughter and I took part in the local Sport Relief Mile. We used this event as part of our fitness efforts and, for me, it is part of my triathlon training. Anything that I can do to contribute to my fitness leading up to the event is considered training as far as I’m concerned😉. It was a chilly morning and there was a fresh breeze blowing across the open field as we made our way to the event. There was the usual pre event warm up where we all jumped around for a bit and did a few stretches and then we were off.

The course was essentially two laps of the field but with a few extra steps added here and there. I managed to trot around without stopping and my daughter ran most of the way, walked for a little bit and still beat me to the finish line. She’s more competitive than I realised I think👍 We were cheered on our run by three of my grandchildren and my hubby who came along to support us and it was really lovely to have them there. To hear the children shouting ‘Come on Nanny’  and clapping as I trotted past them was very special.

   
   
Now, this weekend Phoebe and Sam and their mummy are coming to stay for a few nights for the first time and I’m excited. Maybe that’s why I can’t sleep?! Daddy is going to a stag do and having some well deserved time off. Mummy will be here with lots of people on hand to cuddle and feed and change the babies and I’m hoping that she gets some rest too although I have no doubt that she has a list of things that she wants to do while she is here. She already has a haircut booked. 

Yesterday the whole family went to the hospital for an appointment with Phoebe’s paediatrician. Following on from the difficulties with her feeding and lack of weight gain among other concerns this was seen as a very important meeting. Mummy and Daddy were hoping for reassurance and some answers to their questions including does Phoebe have reflux? Is she still floppy? What are the results of the genetic testing that both babies had done at birth? Can Phoebe be prescribed milk with more calories to increase her weigh?

Unfortunately, the appointment was very disappointing. I can’t type what Mummy actually said about it because I don’t want to type any swear words. Basically, the doctor appeared exhausted and disinterested. He wasn’t able to give any concrete answers to the parents questions about Phoebe. He said the genetic test results weren’t back, or if they were he didn’t have them on record, he said that the dietician would be in touch about Phoebe’s lack of weight gain. He said that Phoebe may have reflux but that she would grow out of it ( oh, that’s ok then!?😡) and that the muscle tone in her arms and legs weren’t a major concern.  How frustrating for Mummy and Daddy. Let’s just hope that the individual specialists involved in Phoebe’s care are able to work together so that she and the family get the best support and care available to them.

Anyway, that’s it for now. I wish you all a wonderful Easter holiday. Stay safe and don’t eat too many Easter eggs😉

Happy Easter from these two cherubs too.

Love Nanny xxx
   

http://uk.virginmoneygiving.com/phoebeandsam