31.1.09

Dad back on the Blog tonight.
Today we spent our day at home with Lucas. He has had such a disruption in his care over the last few weeks that we wanted to spend time alone with him. I think he is very wary that we always seem to leave, so feels unsettled even going for afternoon sleeps, as he probably wonders who will be there to wake him up. Although only just two, we know he is aware something is wrong, and he was more upset than normal, but also more cuddly than usual. Lucas and I gave Mum some time this morning, and went for a wee trip to Bo'ness to see his favourite Choo Choo's, Unfortunately it was closed for the season although there were a couple of old diesel trains in operation, and the driver was kind enough to give Lucas a "toot toot" when he drove past. We then went to the toy shop and bought some Thomas engines with some of GG's (Great Granny's) birthday money.

I'm writing the blog in bed tonight with Nic beside me, she is exhausted and almost asleep, so I have full editorial rights this evening. That will also mean even more bad grammar and spelling!
It does however give me a great opportunity to thank Nic for doing everything she could for our Theo, from taking good care of him when inside, to becoming an "expert" in Exomphalos. She certainly gave every medical professional we met some pretty tough interrogation during consultation, and left no stone unturned. Nic has been extremely brave through this journey, and I really cannot put into words how proud I am of her courage and bravery shown throughout. It was extremely difficult to watch her first proper cuddle with Theo, in the knowledge his fight was over, and the first real cuddle (unaided) would only be for some minutes, but I know she found her peace when Theo passed (as did I). I did take a photo at the time and with Nic's permission, I will publish on the Blog. Many of you have been on this journey with us and I would like to share our moment with you also.... They just both looked so beautiful.

We now need to move onto the next step, which means organising Theo's funeral. As I sit here, I have no idea where we find more strength for this. No parent should be in this position. I hate to say it, but sometimes this all really seems so unfair.

Now I WILL ask for your help. Tonight we setup up a fund for the Sick Kids Hospital in Memory of Theo and any donation would be greatly appreciated. Every little bit would help. Theo had 24/7 and 1:1 care for 3 weeks, not to mention the top surgeons and consultants in the country looking after him. We would like to think that this level of care can and will continue for other babies with similar conditions. Just click on the attached link.

http://www.justgiving.com/theowelsh

Thanks again for all the posts, e-mails, txts and messages. If its OK we would much prefer this to sympathy cards (the cost of a card and stamp could go into his fund instead). I dont think we are ready for cards yet as we have only just taken down the congratulations cards, and it's these little things we find difficult. So keep the txt's, posts etc coming as they do help, they really really do...

30.1.09

How do I write this blog? I must though as I would otherwise be letting Theo down...

Today our beautiful son passed away after 3 weeks of a battle he was never going to win. In true 'Theo the Brave' style, he didn't give up but rather Gary and I made the decision for him by taking him off the ventilator. We didn't think we could ever be so brave, and god knows where we got the strength from, but we ended our son's pain by letting him finally sleep in peace.
Where do we start? The surgeons examined Theo's exomphalos yesterday about 12 o'clock and they found that the intestines and some of the liver had started to die. They suspect it might even have started in the womb due to the opening being too small for the contents. Again, this confirms to us that our baby knew he had to make his appearance early to give him a chance of life. Unfortunately, it was perhaps too late or maybe he was too small to deal with all he had against him. The surgeons and doctors confirmed that there was nothing medically they could do for Theo anymore and he would not survive. Infection would take over and it was just a matter of time. It could be hours or days...
We slept overnight in the same room as him and we got to have our first cuddles. Just so wrong that the first cuddles were going to be so short lived. Words can't describe how magical it was to hold my baby after 3 long weeks. My mum and dad, Gary's sister and Gary's mum visited at night and all sat with Theo giving him cuddles and talking to him. The minister from my church also drove out and Theo was baptised. We didn't really sleep but lay on a bed next to him watching him and rubbing his hands and feet. By morning his heart rate dropped considerably when they moved him out of his incubator and we knew then that he was getting weaker. Family visited again in the morning including my brother and his wife and Gary's aunt and uncle and everyone said their goodbyes. It goes without saying how difficult and painful this was for everyone and for Gary and I to see. We could clearly see that Theo was going to lose his continuing battle and that we must get the strength to make the decision for him before he suffered anymore.
At 4.15pm his little body eventually gave in and as his heart stopped, so did ours. As he left this world to go to another place, he took with him a large part of us and we know we will never be the same again. However, he left with us the most special memories and the 3 hours following were the most treasured hours as we got to hold him, cuddle and talk to him without any wires, tubes or machines. He was peaceful and he looked absolutely beautiful. This is how we will always remember our son.
What do I write next? Even feeling how we do, our hearts still go out to all those who have had to read this as you have all been with us on this journey. As always, we thank you from the bottom of our hearts for all your support and encouragement this far and it goes without saying that we need it now more than ever.
We are considering setting up a fund to raise money for the Sick Kids in memory of Theo so please check the blog regularly to see how you can help.
In his 3 short weeks of life, Theo touched so many people's hearts and I know he will not be forgotten. He was an incredibly special baby and will live in our hearts forever.

28.1.09

A quick thanks for all my 'choo, choo' bday gifts. I am a very lucky boy. Thanks also for helping support my mummy, daddy and my new little brother Theo by following the blog and sending all your messages. One day I will read all about it and realise why I got so spoiled on my 2nd bday :-) Lots of love Lucas xxx


How lovely it was to open the blog tonight and see how many people had responded and how encouraging to read them all. I am especially pleased to hear the Guiness frenzie is spreading and I will join the 'team' at 11pm tomorrow in cheering my baby on...
Grandma, grandad, Gary and I visited the brave Theo today and he has again held is own by being really settled. They redressed his exomphalos this morning and they all seemed very happy with it. They will eventually let it 'dry out' so to speak but I'm not sure when this will be. His heart rate had reduced further this afternoon and he was very sleepy and content. I didn't even touch him today as often that wakes him and I can see he is trying to communicate and wake up but I want him to get stronger and bigger so it was a day of rest and recovery. The grandparents sat with him and Gary and I popped into the Drop In Centre again. I was getting a complimentary aromatherapy treatment while Gary got a coffee and checked emails etc. It felt really strange doing something nice for myself and the girl decided to go slow and start with a hand and foot massage. She explained that it was important for me to relax and switch off so I could be strong for Theo. The staff encourage you to use this facility as obviously it is important to look after yourself which in turn helps Theo. Unfortunately that is really hard for me to do and when I tried to close my eyes and relax, the thoughts came flooding and so did the tears. It was a very strange experience as I am usually very good at treating myself but it felt wrong and it didn't feel nice to be good to myself. I'm not sure if this makes sense, but like I said yesterday, it is weird what your mind and body does at times like this. Yesterday Gary almost broke my arm (my own stupidity-not abuse!) as I was handing something to Lucas between the car door and Gary didn't notice my arm and shut the car door on it (luckily didn't slam it or I would also be in hospital with Theo!!) The funny thing was it didn't really hurt and I just kept thinking that it didn't come close to the pain that Theo must be feeling. It's almost like I wanted to feel some pain to feel better about the whole thing, perhaps to feel less guilty? So in the end I got my treatment with a box of tissues on my lap and although a stange experience, I think it did help a bit. I dread when it is all over and I eventually begin to relax again as I fear there will be no stopping the floodgates...shares in Kleenex might be a good idea!!
We are spending the evening at home to try and get an early night (yeh right!) and Gary is currently trying to assemble Lucas's new art and craft table. Mummy and Lucas are spending tomorrow being creative and hopefully going to try and make a cardboard train he saw on 'Mister Maker'. We shall see...if it's any good I might post it on the blog...

27.1.09

Nic here as Gary is cooking dinner so I thought I can either put my feet up or update blog...How do you relax again??
The 3 of us went through to the hospital today as we decided to take Lucas to the Sick Kids Drop In Centre we discovered yesterday. It is for parents, families and siblings when your child is in hospital and is a wonderful resource as there are lots of art and crafts activities, toys for toddlers, internet access and sky tv with playstation and dvd. It also has free tea and coffee for parents and a sort of living room where you can relax. Gary went in to see Theo while Lucas and I painted and got creative. It was just lovely for me to spend time with Lucas and see him happy but nice to know how close I was to Theo as well and that dad was with him. We then swapped and I visited my boy whilst Lucas and dad built a train set (surprise!) and had some lunch.
Theo was looking well today and his temperature and heart rate had gone down since last night. It was sitting quite high when I left him late last night and they were concerned he might have caught an infection. However, it was probably a response to the surgery and theatre. It was so nice to see him peaceful and content today although his little tummy still looks sore and I'm sure he is very uncomfortable when he moves. He has quite a following in the hospital and there are a lot of nurses who pop up to visit him. I met a few today and it was funny how happy they were and there was definitely an 'air' of positivity from everyone I spoke to. They were all commenting on how much he has grown and how well he looks. We had conversations about him getting bigger and laughing about him in the future with no belly button and an impressive scar to show off. It was the first day since he was born that I felt comfortable talking about him growing up and having a future. I know that sounds like I have been in a rather negative place, but it is hard to explain. When you have a baby so very ill, it is quite strange what the mind does to protect you and I have certainly been holding back from conversations about him growing up as I have had to just be thankful for everyday I have spent with him since his birth(tissues at the ready...again!)
The surgeons came round and were still very happy with how everything went. Mr MacKinlay had been away since last Tuesday and he was really pleased with the procedure, had a smile on his face and didn't use the word 'problem' once. I feel at times I could kiss the surgeons and give them a huge hug as a way of showing my appreciation but have contained myself so far...maybe best to save it for when he is coming home!!
Thanks once again for all your birthday presents for Lucas plus cards and messages for Theo. Gary and I couldn't have got this far without all your love and support xx

Finally, we have been made aware a few people are having problems posting comments. We have now changed the security settings on the Blog so you no longer need to setup an account in order to leave a comment.

26.1.09

HAPPY BIRTHDAY LUCAS, and Happy Australia day to all you Ozzy readers!

We were in the hospital early to see Theo before his operation although it was nice to have a really short 5 minute drive this time. When we arrived he was squirming around and grimacing a lot and we felt extremely useless. We are now familiar with all his machines, and what they do, so couldn't work out what the problem was. When his nappy was changed we could see the Silo was beginning to break away at the base, so we can only guess it was this that was causing him some distress. Needless to say we were so pleased his op was scheduled within a few hours. The Silo had done its job well but needed to go asap.
Theo was taken to theatre at 11am whilst Nic and I went for a very emotional walk in the Meadows rather than waiting nervously in a hospital waiting room. Theo was back in ITU by around 2pm so we headed back and met with the surgical team shortly after. Everything went to plan, so now its a bit of a waiting game (refer to post on 24/1 for details on exact surgery). The Exomphalos is still very large but with a better chance of returning to abdomen and it looks considerably smaller to what it was in his first week. The surgeons couldn't see what was in or out, they mentioned they couldn't see the spleen or stomach, but difficult to tell as Theo has been able to form his own thin membrane over the exomphalos, which is another very positive sign. They took a Skin graph which was then rushed off to Sheffield where it will be grown in a lab for about 18-21 days...incredible! (as Jane said in a text today 'Holby City doesn't get a look in now-this is way more exciting!!) Now we just need our boy to heal, get stronger and recover from his 3rd theatre visit. His incubator no longer has the 'washing line' holding up the silo and exomphalos so he now looks like a 'real' baby when he is lying in his incubator with his blanket over him. Quite emotional to see as you almost feel like you could hold him and I know Nic is desperate for that day.

Nic & I are pretty shattered both emotionally and physically tonight although Nic drove back through to see Theo and read him a story, I think wanting to make her presence felt as he comes round a bit. We are on day 16 but only really back at the stage we had hoped to be after his birth (albeit 8 weeks earlier than planned!) Our journey is far from over but we hope that the major hurdles have been cleared and we can focus on the road to recovery now. It's back to the next 72 hours being quite critical in terms of infection and how Theo does after his procedure so keep the thoughts and prayers coming. Nic came out of the hospital this morning, as Theo went into surgery, and when she checked her phone she had around 20 texts which off course set her off again, but in a good way.

25.1.09

Hi, Dad here. Mum is attached to the nipple vacuum! Theo has been pretty stable most of today but has had periods of activity. It's difficult to tell if he is uncomfortable, in pain, unsettled, or just an active child (we hope for the latter). He's on max morphine for his size/age (1ml pr hr), so he'll get no further assitance there. He goes into theatre tomorrow morning, so we are apprehensive, but confident. We are staying in Edinburgh tonight (only 5 mins from hospital), so I'm enjoying a LARGE guiness to calm the nerves, in the knowledge I do not need to drive! We really want to say a quick thank you to Alan & Angela who's flat we are currently occupying. Alan works at Sick Kids and had been informed of a child with a large exomphalos who had been admitted and the name baby welsh was mentioned. He put 2 and 2 together and popped up to ITU (intensive care) to find us. He then insisted on getting keys cut for his flat as Ang and their wee one were going on holiday to sunny Florida for two weeks so their flat would be empty. We really cant thank you guys enough, its extremely comforting to know were are so close to Theo and your genorosity is overwhelming (Ang - my guiness is on a coaster, so dont panic!) Probably another great example of how much support Theo has around him!

Today we celebrated Lucas's Birthday with the family. His b'day is on the 26th, but with Theo's op, were did things a day early. Lucas cannot understand calenders yet, so we are confident he will never know and we had a great day. Lucas and his cousins Anya and Christpher were very entertaining, and a welcome distraction. Mum did really well considering, but knew someone was missing....not including my Dad who is not well enough to travel from Inverness following a recent serious heart attack (you couldnt make this stuff up if you tried!) We thoroughly enjoyed some pass the parcel, musical statues and musical bumps (a few of us are expecting to be a little sore tomorrow with all that activity!)

This is a good opportuntity to thank everyone for their presents, as we may struggle to get round to thankyou cards. We have had the worst case of "knock door run" over the last couple of days....every time I get to the door, there is just a wee bag waiting for us. The best one was tonight when we heard a knock at the door but when I opened it there was only a bin bag sitting on the mat. I took it through to the living room and as soon as I started opening it I could smell Cigarettes! I took one look at Nic and said 'EMILY'!. Poor soul had driven all the way through from Edinburgh, knocked on the door, and sprinted away leaving a bag of goodies for Lucas, Nic and myself (I got some wine and Nic got some cosmetics...she knows us well). Em you are a star and we love you very much.

It goes without saying that we are all very anxious about tomorrow as it is the 3rd time Theo is going for surgery and he is only 2 weeks old and still 6 weeks premature. He has gone through more in his young life than most of us would ever experience in a lifetime and we are so very, very proud of our brave son. Talking of bravery, its worth mentioning my Gout has now cleared up. I only mention this as there as been a few concerned people, and this was beginning to bug Nicola somewhat!

Nic here, and I have just read Gary's post and feel I need to add how very proud I am of my other big brave soldier and I'm so very pleased he has struggled through his gout whilst I struggled through childbirth! I know there is no comparison and that he would have been in much more pain than myself but he barely mentioned it...well done sweetheart :-)

24.1.09

Gary and I visited Theo this morning while Lucas was kept very busy swimming and charging around the softplay at the Commonwealth Pool with Aunty Nic and granny. They looked more tired than Gary and I by the end of it! Lucas will sleep well tonight...
We met with one of the surgeons (Amanda) today and she spent a long time explaining the next steps for our Theo. They are going to take him to theatre first thing on Monday morning and will remove the silo that is currently stitched onto his body. From experience, they know it will only last 10-14 days before it starts to come away and so they are keen to do this while it is still secure and healthy. They will then try and 'tuck' a few more bits back in and will cover the remaining exomphalos with a material called 'integra' which is used to treat burns victims and patients with large ulcers. It's basically collagen and shark cartlidge(looked that up on the internet so don't quote me) and acts as an artificial skin which will seal up the opening(albeit with contents still outside) and encourage Theo's own cells to grow a membrane again. At the same time, they will take a small skin graft from Theo (they only need about a square 1cm) and they will then courier it straight away to Sheffield, to grow it in a lab. It should take about 18 days to grow to the size they require and then they will place the skin over the integra to seal it and act as a barrier. This would mean that Theo would then have a large hernia which would hopefully return gradually to his body as he grows and they would then eventually operate when they had enough stomach muscle to close it and fit all back inside.
It sounds absolutely incredible and the hospital are very 'excited' in a good way as they have never done this before and everyone is keen for it to work. Our boy is being spoken about throughout the country as they search to find the best treatment and everyone and anyone has been consulted. There is an expert on growing skin who will have the necessary equipment to take the skin and transport it to Sheffield. There will also be the consultant surgeon, 2 registrar surgeons, head of plastic surgery and a medical photographer all there to lend their expertise in their own field. The cost for all this is phenomenal but I wouldn't expect anything less from my boy if he takes after his mummy...only the best will do for our son ;-)
Gary Drove into see Theo tonight and he was well rested. They had up'd his Morphone from 0.8ml to 1.0ml per hr and given him some paracetamol as he was a little uncomfortable. They have also re-introduced Furosemide. This works by blocking the absorption of salt and fluid in the kidney tubules, increasing urine which will help reduce swelling and hopefully allow Theo to open his eyes without a lot of effort.
So our son is fast becoming well known and he is only 2 weeks old. I always knew he would be very special but even we didn't expect this. He is proving to be something of a miracle and we just know he is going to astound the medical world. His journey is far from over and there are still many hurdles to get over so you must keep thinking and praying for him. I worry that it all sounds like he is getting better and people stop sending as many positive thoughts. I know that sounds silly, but we have to cling to everything and I strongly believe he is doing so well because he is in so many people's thoughts so keep it up!
I'm off to bed now as we have a big day tomorrow. It is Lucas's bday on Monday but we are bringing it forward by a day and having all the family over tomorrow for a 'party'. He has no idea how spoiled he will be this year....

23.1.09

Mum here. Gary away to the supermarket for Guiness and curry accompaniments. We are trying to relax and spend a Friday night as we might usually eg food and good film perhaps.
We visited Theo this afternoon and the surgeons had been round in the morning to 'squeeze' a wee bit more in. It is shrinking all the time and what was bigger than his head is now relatively small and so encouraging to see. Feel so sorry for wee Theo getting all those bits squashed into his wee body but I know they are trying their best to get as much in for his own good in the long term. We are meeting with the surgeons tomorrow morning as they are talking about taking him into theatre on Monday (unfortunately Lucas's bday) and putting another sack around it which they use for burns patients and also taking a small bit of his skin to grow in a lab. They will only need about 3/5mm of skin although I'm not sure where they would take this from. It terrifies me the thought of doing anything else to him as I am so enjoying seeing him look better and I just want him here and well. Just the hardest thing as a mum to think of this agonising start to life he has had when he should really still be in my tummy safe and secure or at home with his family.
The good thing was he was really awake today and was looking around his incubator and trying to focus on Gary and I. His eyes were more relaxed today instead of rolling around so he looked more like I remember him from when he was born. He definitely has 'wise eyes' and you can just tell he knows more than he is letting on! We have now had 2 messages from friends saying that the song 'Wires' by Athlete reminds them of our situation especially the line where it says 'I see it in your eyes, you'll be alright'. If you get a chance you should listen to the lyrics as it is pretty powerful and was written after the singers baby was born prematurely and was in intensive care. We looked at Theo's eyes today and got that exact feeling. We know our gorgeous son was trying to tell us the same thing x

22.1.09

Hi. Dad here, Mum is getting an early night tonight.
Nic saw Theo this morning while I headed up to the softplay at the Commonwealth Pool with Lucas. The Surgeons decided to try and squeeze in a bit more of the exomphalos and Nic sat in on the proceedings. They managed to 'drop in' about another 6mm or so which was promising and increased Theo's morphine from 0.5ml per hr to 0.8ml to make sure he isn't too sore or uncomfortable (I'm aware a few medics are on the Blog now, so figured I should make it informative for all audiences) . Unfortunately there is a virus in Intensive care, and Theo has managed to catch it even though he was in his own 'isolation booth'. It called RSV and is basically a common cold but it doesnt do much good for Prem babies as it affects their breathing especially when they are already ventilated as they can't clear their chest like we would and secretions build up. The Dr's have started giving him oxygen and a bit more pressure to assist him. A bit of a backwards step but hey, it wasnt the wee mans fault!
Mum and I both visited tonight. Theo was initially unresponsive, no doubt with the increase in Morphine, but he gradually came round when he heard our voices. Nic read him the book 'Guess how much I love you' and he kept his eyes open throughout. It was a real pleasure to see.
The surgeons popped in again to check their handy work and were happy. One of them couldnt seem to work out her left from right leg when trying to work out which leg Theo's blood was being taken from and we noticed her shuffling from one foot to the other trying to work it out. Nic did highlight this to her and commented that she was slightly worried about her operating on Theo! It was all taken in good humour.

Thanks again for all your e-mails, texts, voicemails, flowers, cards etc. Each time we arrive back from the hospital we never know what to expect at at the door. Tonight we found a Thomas the Tank bag with some sweeties and guiness...bless! Nic has also just received a txt to ask if we want a chicken curry to be delivered tomorrow(cheers Gordon and Lesley).
I know Nic has had a few enquiries about gifts etc and I think people are unsure how to treat the birth which is understandable. Although we are delighted he is here and would love to celebrate that in itself, we feel probably best to wait till young Theo is home to properly welcome him into the world. Maybe people could wait till that day particularly as it is pretty difficult getting prem baby clothes which also accomodate large exomphalos's!!

21.1.09

Gary and I visited Theo today while Lucas spent quality time with Aunt Ros and his big cousin Christopher.
Theo was settled again and all his 'stats' are stable and there has been no real change in his care. I think they are probably just trying to keep him comfortable and let him recover from Friday. Their main focus is on getting his tummy used to some milk (which often takes a long time for exomphalos babies) and also trying to reduce his ventilation. They are only giving 1ml an hour and the poor wee thing is trying very hard to tolerate it but you can tell he is feeling a bit uncomfortable and nauseasus like having a really bad hangover (and before anyone posts a comment on who he reminds you of....Gill has already text me with that one so save yourselves!! ;-) He is doing really well though and not bringing it all back up so some of it might be making its way through - it has a long way to go all the way out his body and back in! He was also trying to open his eyes tonight and was definitely responding to our voices.
Daddy read him a story today which I'm sure he loved and it was quite emotional to watch. Gary is just so big compared to little Theo and the difference in their hands is incredible. I just look at them together and hope that one day Theo will be just as tall and handsome as 'man mountain' and will be telling tales of his large scar and how he almost got eaten by a shark!!
We didn't see the surgeons today and they haven't attempted to push the exomphalos down any which I think might be a good sign as they are possibly just letting it do its own thing knowing that they have another plan up their sleeves...I really hope this is the case. I drove through myself this evening and spent another couple of hours with him and read him a few more stories and played some music to him. It is lovely to be able to spend some 'relaxing' times with him and for once I didn't cry!
My friend Emily text me with a lovely thought today - "if so many people are praying and thinking about Theo in America, Australia, New Zealand and Britain then there is probably not a minute when he is not being thought about day and night". A nice thought to leave for this evening :-) x

20.1.09

Mum here for the time being with Guiness in hand! Good things come to those who wait I believe is their 'slogan' and today came a little hope again. After having a 'normal' morning at a softplay with Lucas and braving the highest slide and having to squeeze through the rollers(pretty good going 10 days after having a baby!!) we visited Theo. When we arrived, Mr MacKinlay was in with him and discussing his next steps. He is leaving for London for a week and was obviously keen to get a 'plan' together for his return. They are considering removing the silo they have on the exomphalos and covering it with another kind of sack which is used for burns patients. This other material will encourage Theo's own skin to regenerate and grow a kind of layer of its own. The one they have just now is ok if the contents were able to return to the body but as previously mentioned, only lasts about 10 to 14 days and then it isn't 'watertight' so to speak and doesn't encourage a layer of it's own to grow. I think everyone knows that they will be unable to 'fit' everything back in and so they have to look at other ways of repairing it. Their other plan is to also take a small amount of Theo's skin and grow it in a lab for about a fortnight to basically grow new skin to cover the exomphalos. It would still mean he would have a large hernia but they would then manage this like the conservative method they had hoped to do at the beginning. The thought of them taking anymore of him saddens me and I obviously asked if they could not take my skin instead as I would happily be skinned alive for him but they said his body would reject it. It has to be his own cells etc. It does sound like a bit of a miracle to do all this but we all know miracles happen and if it's going to happen to anyone then Theo will be the chosen one. How can it not be after all the prayers that have been sent:-) He was looking slightly better today and definitely seemed more responsive. His wee eyes are still very puffy and they said it is probably sore for him to open them but he was definitely moving his eyes around inside his eyelids when I was speaking to him today and he was moving his wee feet when I was rubbing them...a good sign he is tickly like his big brother! Mr MacKinlay seemed more positive and when I joked about not wanting to see him today in case he used the words 'huge problem' again, he laughed and said I was not to worry until he used the word 'insurmountable problem'!! (had to look that one up in the dictionary!) He also emphasised that they would do everything in their power to fix Theo and I know they are searching every avenue for him. They are reintroducing his milk again today as they tried yesterday and he threw it all back up after 4 hours (hopefully nothing to do with all the ailments I am taking...maybe he just doesn't like the Guiness mind you!) So overall a positive day and it has certainly helped to boost me again and pick my spirits up. Talking of which, I want to thank you all again for your kind words of encouragement. I know I keep mentioning it but I can't begin to explain how they keep us going. It reminds you how lucky you are to have such a wonderful group of friends and even when faced with adversity, you can get so much strength from pulling together.
Well I'll go now and finish my Guiness and phone the hospital for my next update. I'm sorry if some of the posts are so long and I hope they don't put people off reading them but as much as they are a way of keeping you all informed, they are also a record of our gorgeous sons journey which one day he will hopefully read and realise how much bloody stress he put us under and understand why he is wrapped in bubble wrap and not allowed out of my sight for a minute :-)

20.1.09 - part 2

Dad sitting here with glass less than half full.....(literally) as Mum has taken more than her fair share of the guiness!! Really pleased to see Mum feeling a bit better today. This journey is far from over, but its nice to have a 'good' day to recharge. I haven't added in pics of Theo, because although he is doing well, he is still quite puffy and has so many wires coming out of him that "viewers may find it disturbing".

The consultant explained that although Theo's liver has improved since last week, it is still not working as well as it should be.....Now I know I've only been studying pediatric medicine for a week, and although I have no formal medical qualifications other than a first aid badge from cub scouts, I am fairly confident that if my Liver was seriously over sized, and half in, half out my body, I wouldn't expect it to be working at full capacity either!
Off to get some well earned kip now, after being rudely awoken last night at 3.30am by a home alarm company calling to say there was a fault with a friends security system. I'll not name any names on the blog as its in the public domain.......All I'll say is, cheers Poo!

19.1.09 - part 2

Not much to add tonight as its been a really tough day today. Theo has shown no improvement. I know we should be pleased that there has been no problems but we are aware that time is not on his side, and he needs to heal himself quickly. Mum has been pretty upset most of the day, but as ever, I see a few smiles though the tears whenever she reads her txts - keep em coming! we need them more than ever!
Lucas has been a real star today, he can be a right handful at times (as many of you have experienced) but he has been so so good the last few days. Mum was able to spend some quality time with him this evening which is healthy for both of them.

I took a visit to my GP as I've been suffering from Gout for the last 2 weeks and needed to get it fixed as I'm not walking too well, and driving is pretty painful. Obviously this hasnt been talked about since the birth, as I was getting a lot of sympathy from the nurses, and as you can imagine this didnt go down too well with poor Mum who had a long labour, and then theatre following the delivery! Normally I'd be on the couch in agony, but seeing what Theo is going through, it all seems pretty insignificant. My Mum has already e-mailed to warn me not to drink the Guiness I was prescribed by the hospital (too late!)

19.1.09

Mum here as I thought I hadn't written for a while and people might start preferring my husband's updates especially as he seems to be getting such good feedback! I'm quite impressed Gary ;-)
Mum, dad, Lucas and grandparents visited Theo today but it was quite tough going as I'm sure you can imagine. Intensive Care is no place for anyone but especially not a 2 year old who wants to run around and hide behind curtains etc. Poor wee thing ended up watching a DVD in the hospital corridor while we tried to talk to Theo's surgeon. It's also quite upsetting for grandparents to see Theo in his condition and I fully empathise how hard it is on them.
Theo is still stable but asleep and although still no backward steps, he is still very ill and there are concerns about the pressure on his body with the exomphalos. Unfortunately there didn't seem to be any 'drop' of intestines etc into his body and so they have left things as they are today to see if it goes in a bit more by itself rather than forcing it. Mr MacKinlay(Theo's surgeon) spoke to us about the condition and is very worried himself as to what they will do as there is still so much to go back in and as he said 'he can't live with his liver outside his body'. The problem is what will happen after about 10 days when the silo that is over the contents has to be replaced. They can't keep putting one on as it has to be stiched to his body so they may need to look at other options but this is the tough part. He is speaking to other surgeons about this and they will hopefully come up with something but he just kept describing it as a 'huge problem'. As you can imagine, we all left very downhearted and I'm now struggling to keep my head as high. I think the fact that he has had his eyes closed from Friday is also hard for us as it makes him seem more distant and unwell. At least when he was looking around, I was reassured that he was responsive and 'real' if that makes sense.
I'm sorry my post doesn't seem so positive and upbeat as I would like it to be but best to be honest and in some ways it probably helps for me to get it out-so to speak. I really can't begin to thank everyone for all their well wishes via texts and replies to the blog as they mean so much and I often feel like I am being 'carried' by them as I know so many of you are with us on this journey. Well I'm going to go now and have some Guiness, fenugreek tablets(which makes you smell of curry) and some brewers yeast....Dolly Parton beat your heart out when my milk comes in!! It is the only practical thing I can do for Theo at the moment so got to give it my all. Gary may add his own bit later as I think it's quite therapeutic and he seems to be quite a hit with it....we need to keep the ratings up!

18.1.09

Good Evening all...Dad here again. I believe a few people now wait in anticipation for the next chapter.

Thanks for all your kind words and torrent of Txt's. I cant say enough how much this means to us.

Things have been fairly stable today for Theo. I visited the hospital with Granny (all the way down from Inverness) it was her first time meeting Theo, so she was very pleased to see him, and hold his hand for a wee while.

We tried to regain a level of normality using our own support mechanisms -I popped over to Ewen's to watch the football in the afternoon, while Nic attended church. The minister sat and prayed with Nic and Margaret before the service and said a few subtle words during the service, which was very comforting. Later that afternoon we witnessed a miracle...........................Aberdeen beat Celtic 4-2! ( I only hope the big man received the messages about Theo as well!)

Another sign that Theo's surprise arrival was meant to be, was in his horoscope from last Saturday that my Aunty spotted and forwarded today on e-mail.

'Are you really in an extreme situation? Is it time to start thinking about making big, irreversible moves? If you truly think you are safe to stay as you are, do so. Deep down though I suspect you know perfectly well that a tide is turning. The week begins with a Full Moon in your opposite sign. You can wait passively till the big change happens automatically or you pre-empt it and gain an advantage. If you want to do that, you already know what you must do a soon as possible.

We feel this really describes Theo's journey well, did he come early because he knew something wasn't right? You can make your own mind up....

Nic & I both went to see Theo this evening. After a rocky start (due to the new admissions in the ward, and a number of people wanting to see/inspect Theo) we had a little time with our boy. He is still heavily sedated and has not opened his eyes all weekend which is difficult because you feel like he is OK when he opens his eyes and moves around a bit. The consultant is in the process of reducing is morphine levels tonight to encourage him to be more aware of his surroundings and shift some fluid which has collected around his body due to surgery and lack of movement. They were slightly concerned with some swelling in his leg, so brought in a radiographer to check the line which is inserted up into his groin to make sure everything was connected OK. They were relatively happy, but may need to remove it and put in a new one, which is not so good as Theo will need to go into theatre again, and we all feel the wee sole has been through enough (Dr's included). The good news is the surgeons managed to squeeze over a cm back into his tummy, so the exomphalos is slightly smaller, so we are slowly going in the right direction

All in all the specialists are happy with his progress and mentioned that he has not taken a back step yet which is very reassuring.

To top the evening off on a good note, Nic was prescribed a half pint of guiness to help with the expressing. I suggested that I should also take the medicine as we are on this journey together, however I will not be using the breast pump!

17.1.09

Dad here again, Mum is currently milking..sorry "expressing". Not an enjoyable job, but Theo will appreciate all the nutrients when he starts feeding again. Today has been a better day. Mum and Dad feeling a bit more positive. Yesterday was definitely the most difficult day we have faced. I thought I was doing OK until I was asked to sign the consent form for surgery, and realised I had lost the ability to pick up a pen, far less sign my name..I Knew at this stage the Surgeon, Mr MacKinlay would not be asking me to assist in theatre!

Theo is still recovering today from his big op yesterday. He's heavily sedated, but the Consultants are happy with his condition. They have stopped introducing the diuretic, which was helping to reduce swelling in the skin, so he looks a little swollen, and bruised today, which is not easy on the eye, but it was explained that out of the problems associated, this carries the least amount of risk. The next 72 hrs will still be critical for Theo as he needs to recover from surgery, fight any potential infections, and just get better.

We met with one of the surgeons who had been able to manipulate the sack and push a few bits back inside. They can only do this very gradually as its does put some stress on Theo who is still only very small, also the gut doesn't agree with being moved around so they have stopped his milk feeds, but will restart when things have settled. Today is still only a very small hurdle as the risk of infection at any time is always a massive concern. But we should be positive on today's outcomes.

Thanks again to everyone for their support. I will not name names for fear of missing people out. Please keep the messages coming, Nic isn't often on e-mail but has her phone all the times (no change there!) and always appreciates a txt when she gets out of the hospital. It is really difficult to reply on an individual basis, but please be assured your messages of encouragement really really do help.

16.1.09

Dads turn on the BLOG today. Mum is sleeping beside me after a very long and hard day.
The poor grammar and spelling is also another give away!

Plan of action was to spend sometime with Lucas today. Unfortunately, we had a call from the hospital asking us to come in (Grandma & Grandad to the rescue- again!).
The Surgeons had a look at the exomphalos and found that the opening of the examphalos was healing itself by closing in, but with contents still out This was not good news as it was beginning to restrict the blood flow to the contents (namely the liver). The surgeons had no choice but too operate on Theo this evening. The initial concern was that they would need to remove the natural membrane which was always a last resort due to risk of infection. Nic & I headed to the hospital to sign the necessary consent form to allow them to carry out the procedure.

Theo was operated on late tonight. The surgeons had enlarged the opening by cutting above and below the examphalos opening, as far as they could. Usually they would cut across the body, but found Theos muscles were too well developed, so didn't want to damage them. A silo (bit like a condom) was then placed over the exposed bits, and stitched to Theos body. The idea is that with a larger opening, gravity, a little manipulating, and the healing powers of the body, should allow everything to fall back into place, whilst in a protective wrapper. This procedure was carried out successfully.

Tonight was the first time the surgeons have had the opportunity to examine the examphalos content in detail. Unfortunately the liver is very big and there is no way they can get it back inside Theo currently. This now causes significant problems, as the liver cannot sit outside the body.
I'm just had writers block for 10mins, as I really dont know how to best explain the rest. Nic & I have remained positive throughout the pregnancy and birth, and WILL continue to do so, however unless the Liver problem can be fixed then Theo will not survive.

We have been at Theo's bedside this evening. The surgeon suggested we get a good nights sleep as Theo was heavily drugged up and wouldn't respond. However Mum walked in the room, said a few words, and his eyes were wide open. He started to wriggle about a lot too. They gave him some more things to help him rest. We are so proud of our strong wee boy. The nurses and other staff have really taken to him, and are always paying a visit to check on him.

I cannot describe how difficult it is too see him in his condition ( maybe its because English was never my strong point!) however, I do want to take the opportunity to say how proud I am of my wife, she has been so strong throughout The pregnancy, birth, and now our time in Hospital. For a second time she sees her newborn child though the window of an incubator, only this time, there is no opportunity for hugs & cuddles for a very long time. She is made of some really strong stuff which I am confident has been passed onto Theo.

15.1.09

Mum left dad and Lucas to have some 'father/son' time in the morning and I had some quality time with my new son. He was looking better today and everyone was commenting on how relaxed and peaceful he looked. I think this is because they have reduced his milk to 1ml an hour and this seems to be agreeing with him better. He looked less 'puffy' as he had got rid of a lot of fluid and generally looked content. Gary and I headed back later in the afternoon and spoke to the surgeon who had again redressed his exomphalos. They are happy with the repair and some of the fluid has gone down which makes it slightly easier to see what they are dealing with. They informed us that his exomphalos was rather unusual as the opening to it is particularly small which isn't normally the case for large exomphalos's. They are unclear as to what this means longer term for Theo as they will struggle to put his liver back in but that it is early days and the main focus is on Theo getting stronger and tolerating his feeds. Overall another settled day for our wee soldier.

14.1.09

Lucas meets Theo!
We took Lucas in to meet Theo today which was really nice to do. We wanted to try and have him picture where we were going everyday and try to have him understand that the baby is here although not at home. He was interested in all the buttons and kept saying 'nine' which is his word for numbers and would have loved to have played with the buttons on the machines...possibly not the best toy! He did however love the present that Theo had bought for him which was 'James' (Theo's middle name after my dad) but more importantly the name of a train on Thomas the Tank. My parents also came to visit Theo today which was very emotional but comforting for them and also supportive for ourselves as it is very hard trying to explain what we are going through unless you have seen it or gone through something like this yourself before.
Theo was again looking around a lot today and trying to make sense of his strange surroundings. I think he loved hearing his brother and I'm sure he is just thinking about how he is going to get him back for all the kicks and elbows to him he has already given him when inside my tummy. Lucas gave a fair few blows! It was lovely to all be a family in the same room and have 'my boys' all together.

Can we also take this opportunity to thank everyone for their well wishes through texts, messages and cards etc. We really appreciate all your support and kind words and it is so comforting to know that we are in so many people's thoughts. I just know Theo has his own guardian angel watching over him and I know he will be receiving all your positive thoughts to keep him going. He is a much loved wee boy and we just know he is made of special stuff. We hope this blog helps inform everyone of how he is doing and is a way of communicating his progress to all our friends and family.

13.1.09

I spent my first night at home which was lovely and Lucas is just the best tonic. He was very pleased to see mummy home and even happier when I put on some Thomas the Tank Engine episodes! It was the nicest feeling to get lots of cuddles and do the bedtime routine etc and Lucas just makes everything seem bearable.
We spent the morning in the house with Lucas and had the builders in finishing the stairs. I really didn't plan this baby well as although Lucas arrived when I was still at work, we had at least hoped to have the conversion finished before this wee one arrived and have a few weeks of getting the house organised. Alas no, and so Gary's office is still in our bedroom and my poor dad has been furiously painting and sanding etc inbetween everything else to get things ready for the carpet being fitted on Thursday. At least that will be it all done and dusted as they say. I keep hoping that one day we will look back and laugh at how tough this time was and think 'how did we do it?'
We visited Theo in the afternoon and he is still settled and stable. He is gathering quite a bit fluid and his body and face is a bit swollen from being on ventilation and not moving around due to the morphine. This is common and although not a big problem, they are giving him something to encourage him to wee it out. Poor wee thing still has so many lines in him and there is not one arm or foot which doesn't have something attached. He had his eyes opened again today and it is so tough seeing him looking around as all you want to do is pick him up and cuddle him. It's so hard not being able to reassure your baby that he will be ok but I'm hopeful that one day I will be able to do this when he is bigger and stronger. They started to introduce some milk today which is promising as they said they wouldn't consider this for a while yet but he seems to have tolerated 1ml every hour so they will stick with this just now. It would be fantastic if he manages this as otherwise they may need to take him to theatre on Friday to put a mainline into his leg and they are reluctant to do this as every line is like a foreign body and so carries the risk of an infection. Keep everything crossed he tolerates the milk and starts to absorb it. The difficulty is that little Theo has to contend with being premature and all the problems associated with a large exomphalos so he has twice the battle. You can see in his eyes that he has lots of fight in him and even the care staff say his eyes look older and wiser than they should...a sure sign he is going to show everyone what he is made of :-)

12.1.09

I am allowed out today which is good news although at the same time quite hard as I am leaving to go back to the 'real' world but without my baby. At least being in the hospital feels like you have had a baby and that something major has happened. It's like you want to delay time so you don't have to start the really tough bit of trying to live normally(well as close as possible would be nice). We went over to visit Theo in the afternoon and he had had another settled night and they had re dressed his exomphalos. When we first walked in to ITU there were about 13 people all around his bed which off course set mum off but the amazing thing is that they are all specialists in their own fields and all giving their input into what is best for our son. It is truly overwhelming to see the level of expertise and care that goes into getting it right for our boy and we can't begin to describe how thankful we are. The surgeon said he was very happy with the repair of the tear and it was really hard to find where it had been stitched. They have also dressed and covered it in flamozene(used for burns) and put a covering over it. He now looks like he has a large football on his chest and it just looks so big and uncomfortable however, there are no signs that he is struggling anymore with it like this and he is still only on a little oxygen to assist his lungs. He had his eyes open again today and it was nice to sit and talk to him and rub his hand. So although a tough day for me with lots of tears, it was a very positive day for Theo and nice to see him settled.

11.1.09

Theo has had a stable first 12 hours and is on air and only a little oxygen. He appears quite comfortable and they are trying not to handle him too much so he can rest and try and maintain some strength after his tough start.
Due to it being a natural delivery, I am feeling really well physically (don't ask mentally!!) which is a huge relief and meant I was allowed out of hospital for a couple of hours to visit Theo. Gary drove me over in my pj's to have a look at my new son (I had seen him very briefly when he was born but other than that had just seen photos that Gary had taken). It goes without saying that it was a very emotional 'meeting' and impossible to describe how tough it is to see your baby with so many wires, tubes and machines etc, but he is just the most adorable boy ever and has already charmed everyone with his blonde hair and cute wee face. He was very responsive to my voice and it was the most he had opened his eyes since birth. He was really looking around for the voice and it was reassurance that he is aware of mum and dad. I'm sure he will recognise his big brothers voice soon enough and his obsessive 'choo, choo'(Thomas the Tank mad at the moment!)

Surprise arrival!

In true Welsh style, little Theo James Welsh made a very early appearance(beating his big brother by two weeks!) and arrived on the 10th January, 2009 at 19.17.
The exomphalos had been gaining a lot of fluid over the last few weeks and so baby was perhaps getting quite squashed in mums tummy. Although the early delivery was the last thing we would have wanted, it went very well and he was delivered naturally which was our best hopes for him. The exomphalos had a very tiny tear in it and so Theo was transferred from Simpsons to Sick Kids that night and taken to theatre to repair the tear. His surgeon said it was the first time he had repaired an exomphalos rupture so he has already broken records!! He struggled to maintain his body temperature the first night but has now stabilised this.
Although it will be a very long journey we are hopeful that he is a wee fighter and feel that the journey has at least started. It has been a very difficult pregnancy filled with worry and doubts and although I would never have wished to have him so early, there is a relief that we have now finally met and that he is here safely. For a while it has been like looking at a large mountain and not knowing how we are ever going to climb it but we are now on our way and have already made baby steps. We are hopeful he will show them what a fighter he is like his big brother.