PREMATURE BIRTH, A GRANDAD'S STORY

And so to your sixth birthday at curved motion in Bury St Edmunds, your favorite place! your Mum got you an ipod, (don't know if you will know what that is by the time you read this) ! and Daddy got you an electric scooter, he had more fun on it than you I think !!!!!!!

I spoke to your Mum today and she tells me the picture below is of "Dilly Wonker" !!!!!! :-)

Roald Dahl day at school, and as a lover of chocolate Willy Wonker is the order of the day

As I posted your first day at school I thought I should post on your last day of the first year..... guess what it was pirate day !!!!

This picture is from a tea party that Nick and Matt had for your 5th birthday. We had a treasure hunt for buried pirate treasure in the garden and a BIG water fight..... it was real good fun !

More pics from your 5th birthday party

So here we are at your 5th birthday and your first party at Activity World Bury, with Erin, Ethan, and all your school friends. Mummy made you a Fireman Sam fire engine cake !!

Just before your 5th birthday Daddy and I took you out for dinner....... YUMMY CHOCOLATE ICE CREAM !!

Dilan and Chirpy!
This is Dilan's first visit to Tottenham Hotspur with the team there(Did a midweek tour last year) Chirpy is the team mascot at White Hart Lane.

This picture was taken at Tina and Mikes wedding, again when you were 4 .

And so to 4 years old, and starting school, this you in your new school uniform first day at St Edmundsbury.

The same year you where three Sarah, Erin's stepsister was 21, Nanny and I always liked this picture of me, nanny, cousin Erin and you !

............. and so on to three years old.

Its time to put a bit of history on to your blog Dilan. Since your 1st birthday I have not updated this page but now I have decided to update it every year for you to have as a "Memory Box".
So here we go, firstly the pic above which is at two years old....................

DILAN WAS A YEAR OLD ON JUNE 28TH 2007 SO TO CELEBRATE, JUST IN CASE ANY ONE PASSES THROUGH OUR PAGES HERE IS A PICTURE OF MYSELF AND HER AT THE PARTY.

HAPPY BIRTHDAY DILAN,

LOVE ALWAYS, GRANDAD. x

THE PICTURE GALLERY IS STILL BEING UPDATED REGULARLY, PLEASE DO LOOK BY CLICKING THE LINK ON THE RIGHT. "DILANS PHOTO ALBUM"

A FINAL POSTING FROM DILAN
Dear All,
I just wanted to say thank you to everyone for sending me all the good wishes over the past 11 weeks. It's been a real help to me and my mum and dad to know that so many people have been there with us every step of the way. I'm looking forward to seeing you all here at home soon.
All my love,
Dilan(& Jen and Gareth) xxx
4:15 PM

So here we are DILAN'S HOME !
Yes after 79 day's Jennie and Gareth have reached the end of thier ordeal, I don't think any of us can really believe it but is true we have been round there this evening and they really are there as the picture shows. Dilan passed her last checks and tests this morning, and weight in at 4lb 3oz. The call came at three thirty this afternoon.
I started to read some of the first days entries today and it really brings home how far Dilan has come in those 79 days, one of the first things was 1.5ml of milk an hour, she now takes 60+ every four, everything has come on in that sort of size, amazing.
I don't think any of us can imagine the emotional roller coaster Jen and Gareth have been on, but assuming that mine was even a quarter of thiers I will never be able to express how proud we all are of them both of them in way they have presented and handled themselves through out.
As some maybe aware there was one LARGE down just after arriving at Bury which I don't think we will have heard the end of, as in our opinion the situation that arose COULD have had a devistating effect on our baby, and the hospitals response since has been very arrogant and bad, however since then, overall, the staff there have been wonderful, and Dilan s early homecoming bears witness to this, so I can only say a huge thank you to Dr Evans and ALL his staff.

So thats it, here we are at the end of what seems to have been a long long journey, thank you all for your support and for taking the time to read this Blog every day, your comments and thoughts have been received with great thanks from Jen, Gareth and all the family members.
And so onward to, not the next 24hrs but to the rest of Dilan Sophia Ward's life...................

Dave (Proud Grandad) 12 Sept 2006.

Things are on track and all is well still, Dilan has now passed the magical 4lb @ 4lb 2oz, Other Grandad has new pics on the photo site from yesterday, so really up to date, take a look , Mother, Father and Baby are all moved into the "Going home room". Who knows what I Maybe saying tomorrow !! As we come, Hopefully, to the end of our long road, I would like, tonight, to Mention one of Dilan's carers at Bury, May-lin, she has been a tower of strength to Gareth and Jennie during the hard times and a real tonic during the fun times, and there have been some, I single her out today solely because she is unable to see Dilan come to "home time" as her father is very ill in the far east and she has been there for some weeks and will not be back in the near future. May-Lin, Jen and Gareth, myself and all the family thank you from the bottom of our hearts for you and your teams unstinting support for Dilan, and we now send you all our love during your families difficult time, I know you read this Blog when you can and rest assured Dilan WILL come and see you on your return. Of course there are others I want to mention and when that time comes I will, but for now onward to the next 24hrs................

Dilan has ventured into the outside world ! Well outside her world, which has consisted of the special unit, this evening we have had dinner in the hospital resturant with Dilan by our table in her pram, she is now off all her monitors, pipes, drugs etc. and really is looking like a baby ready to go home, spot checks on her vitals show all is well and no problems, feeding is normal, and this is why Jen and Gareth have been allowed to take the pram in and walk her around, the next step will be a night or two in a private room with no assistance from the staff, unless an emergency happened, and this will be followed by HOME ! So lets all keep everything crossed that Dilan stays well and that by the end of the week I MAY be able to write my final posting. Still one day at a time though so lets move on to the next 24hrs............

Dilan gained another 50grms on Friday so is now just an oz short of 4lb. the monitors were due to come off but this has been delayed by 24hrs due to a small drop in her oxygen/blood level over night, we are still hopeful that they will come off today(Sat) though, so no real biggy! Apart from this Dilan is doing well, last feed yesterday was 60ml with none bought back.
Will be visiting this afternoon so will have more first hand news later, well in the next 24hrs! ....

Just a quick update this time as things are as they were yesterday, Dilan is moving on well, feeding up to 55ml every 4 hrs, should things continue as they are for another day or two, she will be coming off all monitors by the weekend, so again, lets hope things go as well as they have done for another 24hrs.........

So, back on track with evening postings. Pleased to say that basically its "Same old, Same old". Dilan was taken off her last medicines today and Jen was told to feed her as much as needed to settle her tum every 4 hrs as they are confident that she has passed the stage where feeding may affect her and as she has started to lose weight again, all be it a small amount, 15 gms. So as each day passes we become a tiny bit more confident that Dilan will be on her way home soon. On that note lets see what the next 24hrs bring................

Things were so relaxed when I got back from the hospital last night I fell asleep and did'nt post !!!! So here I am this morning. And that just about sums it all up really, Dilan is very well, and I think we all are starting to believe the light at the end of the tunnel has appeared, if, and its a BIG if, things continue as they are there is a chance Dilan will be going home in the next few weeks !!! She is feeding well from the bottle, her weight is up to 3lb 13oz + this is well past an acceptable "Home" weight, her oxygen/blood levels are stablizing and everything in the Dilan garden is rosey, but as a cautious note, we must never lose sight of the possibilty that there could be another set back, its unlikely though so lets all keep smiling. I will be back tonight to up date so it will not be "The next 24 hrs......."! :-)

As predicted, Dilan had her feeding tube removed today, so is now feeding totally normally, that being from a bottle every 4 hrs, great stuff!! Her breathing is good and she is, generally doing well still. No more to say today, "La vie est belle" Back in 24hrs..........

I think dilan has had a really good day today, she has been moved up too 4 hr feeds, which Jen tells me she has taken very well, and her drops in blood/oxygen levels seem to be getting further apart. When we visited this afternoon I felt she was the best i had seen her for a good few weeks. There are new pics on the photo site and as you can see from the above dilan is looking as good as her nurses !!!!!!!!
The new pics are on page one not at the end as usual. So lets hope the next 24hrs are as kind as the last .............

Back to evening postings, been at the hospital this afternoon and Dilan is still doing well, weight is still basically unchanged, but her drops in blood/oxygen have improved slightly again. Thats it for today, hopefully have some more pics on the photo site tomorrow. Will be visiting Dilan again on Sunday to onward to the next 24hrs.............

VIsited Dilan last night, she is doing well, still dropping on the blood/oxygen front but as I think I have said before this is a normal thing for a "Prem" and she WILL grow out of it. She has put on a bit of weight, although nothing like the gains of last week, and as of yesterday was 3lb 11oz, so more than double her birth weight ! She took 95% of her feeds from a bottle and I think the next big step for her to reach is the removal of the feeding tube in her nose, not to far away I hope. Keep up the positive thoughts everybody, and I will report again in 24hrs...........

I think Dilan's progress in the last 24hrs would best be described as slow but steady, she has improved slightly on the Oxygen in blood front, she is dropping still but is recovering herself without the aid of an oxygen mask, her milk was cut slightly and her weight gain appears to be slowing down, this in turn will, hopefully, help her. We get the opinion that the doctors and nurses are still very happy with Dilan's progress and don't really see this as a problem, just something that "Prems" go through, I suppose that after the last week or so of major moves forward even the smallest dip can seem huge to people close to Dilan, after more than two months of seven day a week hospital visits Mum and Dad, and us, just want to see her go home ! Talking of which Alison has done just that, Mother and baby are both well.
As for Dilan, well I am sure it will be her turn soon, lets just all keep thinking positively and move on to the next 24hrs............

Not long after I posted yesterday, Dilan's situation changed a bit, when the consultant saw her with the oxygen on he was not happy about it and had it removed, at the same time he arranged a blood transfusion, this will give her better blood with more hemoglobin, this in turn should stop the low oxygen level in her blood, there is a possiblity that because she has put on such a lot of weight in a short time that her internal functions are unable to keep up as they are not developing as quick, this means that although Dilan is making all the right things there is not enough of them to keep up with her size. On this basis she has had the quantity of milk reduced slightly to slow down weight gain for a while. We will know the results of this by this AM. today.
On a lighter note Dilan had her second bath last night and was "A kicking and A splashing" and to all accounts had a great time. So lets hope that the blood will work and the next 24hrs will see an improvement in Dilan's situation..............

Two days to catch up on as I have been otherwise involved for the last 24hrs with our daugther Alison, who had an 8lb 5oz girl at 9am on Monday morning.
Dilans Sunday was good, she gained more weight and was still looking "Cute" in her cot, however Monday has not been quite so kind to her as the last few days have been, nothing too major, just a small set back hopefully.Since she has come off the breathing aid her hemoglobin levels in her blood have dropped, this aids in the level of oxygen in the blood, on previous occasions the hospital have just given her a blood transfusion, however this time as her body appears to be starting to create the chemical needed to up this level itself they have decided to give a chance to rectify on her own this however has meant that she has had to go on an oxygen feed to her nose, I suppose you could call it a progression rather than a set back, it just seems that way when you see the tubes back on her. To finish on a more positive note Dilan is now a "HUGE" 3lb 6oz, so things probably are'nt that bad really! I will report back in 24hrs..........

As gareth would say to me "Nothing to report" all is well, Dilan gained another 25g yesterday and trhe doctors are now trying to get her off 1 hourly feeds as this is really the next hurdle to get over, this involves cutting down a feed and adding that ammount to the next feed, this eventually leads to that hourly feed disappearing altogether. So lets see what happens in the next 24hrs.........

Dilan has once again had a great 24hrs, gaining another 45 grms and continuing to settle well into her new routine with no incubator or breathing aid, as you can see from the picture I loaded late yesterday she has never looked so comfy! Without wanting to sound too confident, we feel that Dilan is now on the road to going home, and I am getting to a stage where if all continues as well as they are I may be able to post every other day or so until she does go home, lets see how the next 24hrs go..............

Okay, this morning is short and sweet and all good, Weight up another25 grms, completely off the breathing aid and moved into a cot, what more can I say, a REALLY great day for our Dilan ! Lets hope the next 24 hrs are as good............

Well so much for a mis read on the weight front, not only are we being told that the 80 grms was right but also that in the following 24hrs Dilan put on another 40 grms, this takes her to a whisper short of 3LB ! Today is the first day that there is a possiblity of coming off the c-PaP. (Breathing Aid) for good, she is only doing 2 hrs in 12 on it now and is managing the 10 off well so fingers crossed.
"Other Grandad" has loaded some new pics on the photo site from our visit last night so take a look and I will be back in 24hrs............

We think we might of had a bit of a mis-reading on the weight front yesterday, officially Dilan has gone up by 80 grms in two days ! It would be great if this is correct but realistically I think we can probably expect a drop today, you will find out tomorrow morning. On the breathing front things are moving on, doctors decided to move from 6 hrs to 8 hrs yesterday and providing she does okay, which she has so far, it will move to 10 hrs later today, if that goes well there is an even better chance Dilan will be off altogether by tomorrow evening, this is mega for Dilan so we will ALL keep our fingers crossed !
What a big next 24 hrs it could be!......

So, to the start of a new week, and the goal this week will be to see Dilan off the breathing aid completely, as of Sunday evening she is up to 6hrs on and 6 off, we are hopeful that by Monday evening she willl try 7hrs and from there she MAY BE off by Wednesday, this would be a huge hurdle jumped and will be the first real move toward a "Normal" cot rather than an incubator.
She gained another 20grms on Saturday, but was not weight on Sunday so we are hoping the gain today will be quite big with her new diet, and with Alison due this week, all in all it should be a Big week all round, so to the next 24hrs...........

Can do a quick update this morning, Dilan has flown through her first five hour stint and as I write is half way through her second. I am sure she is doing just as well with this one. A very small change to yesterday, in that she gained 20grms not 35 as first informed, still nothing major to concern us, will be visiting her this afternoon and tomorrow, will update Blog on Monday, so lets move on to the next 48hrs................

It seems like ages since I said this, but Dilan has put weight on !!! It is in fact only a couple of days or so, bit like waiting for the kettle to boil when you're watching it !!! So how much you ask? She is now up to 2lb 8 1/2oz that is 35grms up, grams ounces, pounds, kilos, all very complicated, so it looks like the new milk concoction may be working which is great news. Weight aside verything else is on track, unaided breathing is going well just waiting for the next rise in time off, hopefully that will come later today. Watch this space in 24hrs time.............

Dilan continues to move forward, it was decided to move her to 4 hrs off the breathing aid in every 12 and she had no problems doing her first session last night, if this rate continues it should'nt be too long before she will be off it completely, this would be a real leap forward if it happens! The nutritional results are in, and with a bit of a change in diet starting now, hopefully she will start to gain weight quicker. Thats it for today I hope to be able to say she has gained that weight tomorrow, heres to the next 24hrs.......

Day 50, half a century, and still on track. Dilan spent her first 3hr stint off the breathing aid yesterday evening, she did really well, "Forgot" to breath a couple of times but that is only too be expected, and she came back on her own immediately so all was well. She had a nutritionist visit to try and bolster the weight a bit, as she is not putting on weight quite as quick as we would like, not a worry as such, but something that needs to be addressed. So all in all another good day as Dilan continues on track. Lets hope the next 24hrs are as good.......

What can I say? Another good day for our little princess, It seems at the moment all we are waiting for is weight gain, but this will come soon enough, everything else is coming along nicely, so thats it for today, see you in 24hrs!! .............

Once again I can say All is well, Dilan is now just over the 2.5lb mark and is still flying through her 2in 12 hrs of the breathing aid, if she continues to do well it will be put up to 3hrs this week. "Other Grandad" has some new pics on the photo site so click on the link on the right to see for yourselves.
Onward to the next 24hrs.....

For yet another day I am pleased to report that Dilan is fine, As of Friday evening her time off the breathing aid has been raised to 2hrs every 12hrs, and she breezed through the first session, as I write this log she will be starting this mornings time off, I am sure she will be okay with this one as well. Nothing else to say really.
On a personal note I would just like to say good luck to Gareths cousin Melanie in South Africa who gets married this weekend, we hope all goes well for you, and love from us all here in rainy, cold Blighty !!!!
And so onward to the next 24hrs...... well 48 actually as I will not be doing another entry until Monday .

Another good 24hrs for Dilan, she has gained 25grms, and spent her two sessions off the breathing aid, the morning one was spent sleeping on her mum, the evening session, when we were there spent on her dad wide awake taking in all around her, this also included a feed which is slowly rising in quantity, now at 7ml per hour.
So again I can say, a good day in the world of Dilan, lets hope the next 24hrs bring the same.........

Tad late this morning due to car trouble! Anyway all I can really say is that everything in Dilan's world has been good for the last 24hrs, she has gained another 25grms and is still getting on well with her unaided breathing, I like it when I can say so little ! Lets hope the next 24hrs are the same........

One those days, again, where I can say all is well, Dilan was very settled and contented again yesterday, still doing two hours a day without breathing aids, in fact one session stretched too an hour and forty minutes, she breezed through ! We visited her last night and she really is looking good.
Just to say that ALL the pics are now on "Other Grandads" photo web site, a link for which is on the righthand side of this update, he put new ones on yesterday so take a look. So forward to the next 24hrs.....

Home internet problem now won't be sorted till Saturday so I will still be posting in the morning for a few more days yet.
Dilan is doing well, she is coping with her sessions without breathing aids well and if she continues too I am sure the length of time she is off will get longer soon. No weight gain yesterday, but no loss, the hospital will consider putting up her feeds in the next few days, and thats it really, once again another good day, great news.
Lets see what the next 24hrs brings.....

Morning, well I have found my internet problem at home and will, hopefully be up and running by Wednesday. So too Dilan, what really great week she has had, as of Sunday evening when Mum and dad left she was settled and happy still. On Saturday we all got to see her without any masks and tubes as she is now having a couple of hours a day without her breathing aid and it just so happened at the same time that her feeding tube needed changing. I have a photo of the occasion that I will send to "Other Grandad" for the photo site as soon as I can. Dilan has gained a bit more weight and is coming in at around 2lb 5oz, we are now hoping that as she is receiving additives in her milk she will gain weight at a good rate now, we will see!
Would nt it be good if the coming week is as good as the last, with that thought onward to the next 24hrs....

I am doing this update on dial up !!!! so just a short message to say Dilan is fine, as of last night we were all saying we don't think we have ever seen her look so good, which is great, but a long way to go yet, so onward to the next 24hrs.......

For the fifth day on the trot now, I can say the last 24hrs have been good for Dilan, her weight is steady, she has had no drops in breathing and heart rates and is generally doing very well, the docs are very pleased with her and all seems well, it is so good for Gareth and Jennie to finally have a respite from all the problems...... and it shows they are both in very good form !! "Other grandad" has started a photo log on the web for all to see as I am having all sorts of problems with pics on here and internet at home, thanks Keith, the address is www.photobox.co.uk/album/3612292 . So two more days and we have had a week of good reports, heres hoping for the next 24hrs ........

And so we move on to another day which found Dilan still getting along very well, she has had no "De Sats" in the last 24hrs and gained another 25grms, with a baby her size this is the average daily weight gain so is good news indeed. No more to say really, happy to report this is one of those days I like where there is "NOTHING TO REPORT"! Lets see what the next 24hrs bring.....

Morning all, well once again I am happy to report that on the whole Dilan has had a good day, she had one or two "De Sats" but recovered from them on her own, these are to be expected from time to time with premature babies. As you may have seen in the comments yesterday, she has finally reached the all important 1Kg + the actual weight converts to approx. 36.25 oz (2.26lb). Lets hope that she continues on this path, and that she stays well for the next 24hrs........

I am happy to report that today is one of those days I can say there is nothing new to say, Dilan has had a good, strength building 24hrs, and is doing very well at the moment, lets just hope this trend will continue, for the next 24hrs.....

Good Morning All, and what a good morning it appears to be, I am happy to report that there is nothing but good news today! After the trauma and emotion of Thursday and Friday Dilan has gone from strength to strength. In simple terms it was discovered that Dilan had a major build up of "Fluid" in her lungs and throat which was making it nigh on impossible for her to breath, as soon as this was realised a suction programme was introduced and a course of a drug which drys up the fluid, since these two things have been administered she has gone from being supported on a ventilator to breathing only air on her own !!! This has also resulted in her "De Sats", this when she forgets to breath for a few seconds, have dropped to practically zero, Amazing change, and on top of all this I have had a text from Gareth this AM to say she has also managed to gain a small bit of weight, 990gms in total, not a lot but when you consider what she has been through in the last 72hrs that is amazing too !!! So happily on to the next 24hrs........

Late again, same reason as last two days !!! As predicted things are slowly returning to where we were a week ago, Dilan is still on the ventilator but is on the lowest setting and is doing a lot of the breathing herself. When we saw her last night she was very comfortably tucked up in her incubator, and thats all I can say for this report really, panic over for now, Jen and Gareth got an early night, came home with us, and are planning a lie in this morning, well earned I think.
If I still have no internet at home tomorrow I will not be able to post again till Monday AM so please bear with me all, and for the first post ever I have to say, onward to the next 48hrs !!!!

Still no internet access at home so late again. Well, what an up and down day Dilan has given us today, seems she had a reasonable night, a few drops in her vitals but after yesterday they were better, during the day things again were up and down, breathing and heart particularly up and down, but on the whole not too bad. when we visited in the evening it had been decided that if Dilan had one more bad drop in vital signs that she would be put on a ventilator for a few days to rest her, just after we left I received a text from Jen to say this was to happen, so as far as I am aware this has taken place. The reason I put it like that is because just after that text there was a developement which I would rather not go into just now, but from the point of view of this Blog, I will say that the "Problem" discovered should bring our Little baby straight back to a good strong position we felt she was in a few days ago. I will tell more when I know more, Till then heres to hoping the next 24hrs get better..........

Sorry to be late for Wednesday's update, this is for two reasons, firstly we had a large storm last night and my broadband connection has'nt worked since, secondly, unfortunately, Dilan had a bad turn on Wednesday evening and I wanted to await the outcome before posting.
On the whole she had a good day but whilst we were visiting last night she had a relapse in her condition resulting in, at one point, all her vital signs stopping including her breathing! as you can imagine we were all very concerned and spent some hours waiting for the doctors to do tests, xrays, etc. During this period Dilan's general health was up and down dramatically. At around 21.45 the xrays showed a lung infection which was hindering her breathing, this in turn was stopping everything else from working properly, they inmeadiately administered anti-biotics Jennie and Gareth had a few tense hours.
By about 23.00 she had settled enough for them to feel they could return home, she was still having some bad times but the staff felt they were managable, by about 03.00 the drugs should have kicked in.
As of 07.00 this morning (Thursday) Dilan has, once again, managed to fight her way back to some sort of normallity for a baby in her situation, and she is stable, lets hope the anti-biotics start to get rid of the lung infection today and that Dilan can go back to doing what she does best, growing bigger, getting stronger.........and sleeping peacefully !!!!!!! Once again the next 24hrs are important.

Well tried pics again but no luck, so just me writing again. Pleased to say, nothing new to say, all is well, visited Dilan this evening and she is doing very well and looks great, possible big day tomorrow....... not for Dilan, for me!! Been told if all is well I will be able to hold her for a while, thats one picture I will be posting !!!! So dear reader I will be back tomorrow, In fact in 24hrs...

24th July 2006, Have tried to up load a new pic this evening but for some reason it won t allow me!! So this evenings report wil be easy
GOOD NIGHT
GOOD MORNING
GOOD AFTERNOON
GOOD EVENING, including an hour and a half cuddle with mum and dad.
Good Day all round, great isn t it !
Good Night !! For 24hrs.......................

23rd July 2006, Okay, well after last nights hiccup I am pleased to say that once again we appear to be back on track, as I said Dilan was put on nutrients last night and as of today she has started from the top with the milk, on 0.5ml and building up by 0.5ml each hour, when I left the hospital she was at 1ml and rising, so thats good. It is now most likely that she was just tired out yesterday as I said.

We all noticed that she looked a lot healthier today, as you can see from the pic the new breathing mask is smaller and we therefore get to see her face more often. So there you have it, another up and down roller coaster 24 hrs. As mum and dad return home for the night all is well and our babe moves on another 24hrs........

22nd July 2006, The first 24hrs at Bury saw a quite restless Dilan, just as we thought she was settling she would struggle, particularly with her oxygen levels. By Early afternoon when we left the hospital things seemed okay, and you could tell that Jennie and Gareth were much happier with things, and planning an evening meal out together.Dilans breathing mask was taken off for some 40 minutes and she did really well, Unfortunately all this changed when Dilans levels dropped dramatically at around 18.30, so much so that the doctor was called and tests were done, nothing seemed to be showing but to be safe she had her oxygen put up in order for her not to have to work at all at breathing and after a while she settled to a safe level. The doctor believes Dilan is just totally wacked out after all the excitment of the day and have suggested she just needs TOTAL rest for 24 to 48 hrs, depending on how she does over night they may do more tests tomorrow. She has been put on extra nutrients and anti biotics to be on the safe side. So we will just have to keep our fingers crossed and wait for the next 24hrs.........

21st July 2006 BIG BIG NEWS, DILAN HAS MOVED TO BURY !!
This really was the last big hurdle for baby and Parents, we all know that there is always a possibility that Dilan could go down a peg or two but we never think this and all always stay upbeat about her progress, and on that basis the move is BIG! We have visited this evening and whilst she has been a little unsettled because of the move she is now relaxing and getting back into the swing of growing big and strong.
In closing tonight I have got to say a few words about the staff at Addenbrookes, on behalf of Gareth and Jennie, DILAN, and all family members, the words thank you will never be enough but its all we have so a BIG THANK YOU from the bottom of all our hearts for everything you have all done for our little girl, you are all heroes in our eyes, I know you read this Blog so please feel free to feel very pleased with yourselves !!!
Secondly, I think some may feel I went a bit O.T.T with Bury, but the thing about a Blog is that you express your feelings at the time, and the situation we are in is very emotional at the best of times, I will in thier defence say that the unit at Bury appears to be another wonderful place staffed by more wonderful people, and I am happy that my little princess is in another fantastic place. On that note lets think about moving Dilan onward and upward to the next 24hrs ........

20th July 2006, Pleased to report all is well and Dilan is coming along nicely, she has had a very "Normal" day gaining a little more weight.... what more can I say, except we are STILL awaiting a move to Bury, Whilst I believe that the folk at Addenbrookes really are doing thier best to get Dilan moved I can t help but think that just maybe Bury are deliberately dragging thier heels, whilst there was a bed and transport today, Bury had a problem with the "toilets and water" and could not admit her, I am beginning to think maybe this is financial rather than genuine, one really does wonder sometimes !!!! I did nt hear about an evacuation from the hospital !!!!..... Lets see what the next 24hrs brings

19th July 2006, Have had an evening at home today, and not much to tell but as always that is a good thing. Dilan had a good night as usual, the only thing that happened of any importance was a SMALL blood transfusion, this morning to aid a slight bit of jaundice. Pleased to say that passed uneventfullyafter which she spend a long period of time with her Dad, and thats it, still waiting for a bed at Bury Im sure that will come though. So keep on doing what you re doing Princess..........onward to the next 24hrs

18th July 2006, Just got back from the hospital (21.15) Jean and I both agree we have not seen Dilan looking so settled since her birth, suppose this may have something to do with the small steps that have been made today, she has gone back up to 6ml p.h. of milk, the max for her age and size. It appears that Dilan s weight may have been read wrong for the last few days, as she is 920gm and may have been for the last day or two, good news, also this afternoon she has spent an hour breathing on her own with no mask, this seems to have encouraged her to close her mouth when asleep, something she has nt been doing, "catching flies" some say ! New pics for you all, not great as Jen has had problems with the camera, its very temperamental ! Dilan is much prettier than the pics make her out I seriously thought about not using them !!
Just like to say good luck to "Other Grandad" as he is going into hospital himself tomorrow for a few days, Just think Keith dilan will look much bigger next time you see her !!

So now shes all tucked up for the night and we come to the end of another day, a real good one, so onto the next 24hrs .........

17th July 2006, Well, in a way I am pleased to report that there is very little to report tonight, Jennie and Gareth have had Dilan registered today so you could say shes now official ! Doctors are still pleased with her progress and can, after another brain scan, confirm things are okay on that front , they have said that she will be kept under observation for a few days and if things stay stable the move will be on again ! So thats it really, "Watch this space". Onward to the next 24hrs ..........

16th July 2006, Well as hard as it is to believe Dilan has done it again, she has managed to get herself back on track in 24hrs, yes the "Hole" is closing on its own, her oxygen levels have stablized and she has even managed to put on a little weight, 10 gms, and hopefully if the good news continues the move nearer home will be back on again........ we hope. Sam and robert please note Gareth is starting her young with the right team,as you can see from the tee shirt, we have even got her a baby cheerleaders outfit !!!!
So thats it really, once again Dilan has settled down to doing what she does best, FIGHTING THE ODDS AND WINNING, So onward to the next 24hrs with positive thoughts all round.......

15th July 2006, I need to say straight off that the last 24hrs have not been too kind too "Grandad's LittlePrincess". Having said that, all the set backs she has had today are small in comparison to the hill she has climbed so far.
Over night Dilan was given a blood transfusion, this is because she was struggling to balance her oxogen levels, which in turn was hindering her ability to breath. The new blood, with some additives, was a chance to start again and would aid in clearing out her lungs, it was also discovered that there was a "Hole " in the heart region that was taking blood away from the lungs, again hindering the breathing process, now this is not normally a problem as when the baby is in the womb it is not using its lungs, and therefore the blood is "Diverted" to other parts of the body, however, as Dilan is early this "Hole" needs to close in order for this blood to divert to the lungs, we believe at one point this had probably started to close, but for several possible reasons, it opened again, I guess her little body forgot where it was ! Anyway, tomorrow the nurses will look again and if it is shrinking again it will be left to its own healing, if not Dilan will go onto a course of drugs which will help it close, in the worst possible case, she will have an operation, this however only happens to two or three babies a year, and therefore is considered unlikely at this time.
So to summarise, basically, there is nothing to worry about as all this is not unusual in premature babies, in fact it CAN happen to normal term babies, and we believe is dealt with quickly and reasonably easily. I think because Dilan has been such a fantastic fighter and all has been good, this came as a shock first thing, but as the day has gone on we have realised that it is but a small set back in the greater picture.........Oh by the way the move to Bury is off for a short time!!!!!!.... If anyone is in the area of Addenbrookes on Sunday the "Premrose" support group are having an open day, and I am sure any support would be gratefully received, We willl all be there, Lets hope the next 24hrs bring better news..................

14th July 2006. As you can see from the new pic Dilan has proper cloths on for the first time today. Great stuff, however still no news on the move beginning too wish we had never been told !! Still on to more positive things, Dilan has gained wait up to 890grms, and this evening she was off the breathing aid for 25 minutes so all good again. She seems to have her act together far more than the authorities do !!! Good for her. So not really anymore to say today lets move on to the next 24hrs....

July 13th 2006, You would think that in the situation we find ourselves that a non move would be a trivial problem and it is but it does nt make it any better that due to "Transport Problems" Dilan is still at Addenbrookes tonight, a great place, but getting more expensive by the day for caring parents... So any way, a nother good day Dilan, sleeping well, eating/drinking well, and staff at the hospital are pleasantly surprised with the way she is just moving on day by day including , today a weight gain only small but still a gain. As I left the hospital tonight Jen was giving Dilan a cuddle with Dad proudly watching over them. Since which a have received a text to say Dilan is all tucked up on her tummy for another comfy night asleep in her "Fish Tank". No more one can say really, except, lets hope the move isn t too far away.

just a comment from me, Thank you all for following Dilan s daily reports, I know Gareth and Jennie really appriciate the support, I am still amazed at the number of hits we get every day from all over the world, so as long as you all keep reading I will keep on writing, as have many of you in the comments, and as I have said before, even if you don t know us please do leave us a comment, it would be nice for our family 's too know who you are........ So onward another 24hrs......

12th July 2006. HAPPY BIRTHDAY GARETH ! and who knows maybe you will be getting the best present.

The day started with the usual thing, a good night, Dilan has lost a little more weight but no one seems bothered and after doctors rounds bury was called but unfortunately no bed was available, so another day at Addenbrookes lay ahead, by no means a bad thing for a little'n like Dilan, as it is such a great place. Jennie had Dilan out for cuddles and lovin during the day and all was well, then at 5 o clock I received a text from Jen saying a bed was available and providing Bury had no emergencies during the night Dilan would move in the morning, lets not any of us though lose sight of the fact that an emergency in the night is exactly how our story started, and although there would be disappointment if Dilan s move was cancelled we would all understand. So Happy Birthday son and lets think positive for all three of you so as your birthday gift is completed

And of course, regardless of the outcome of tomorrow it is just another 24hrs .............

July 11th 2006. Evening all, BIG BIG announcement tonight, addenbrookes staff have informed Jen and Gareth that Dilan WILL be moving to the hospital in Bury St Edmunds, 25 miles nearer home and a special care unit rather than an intensive care unit as soon as a bed becomes available, this just shows how amazingly well Dilan has done in just TWO WEEKS ! I think for the parents especially, this is a real boost they are both really happy. On a tiny negative note that really does nt matter, it appears the weight was wrong yesterday she is now 871gms, but as she will be moving anyway this factor is not as important as it may have been. So keep reading , I'll keep posting, and lets all think BURY ST EDMUNDS !!!!!!!!!! onward to the next 24hrs, Dilan's two week old birthday.

10th July 2006, Real quick tonight, all is well and the doctors are still pleased with Dilans progress, Jen tells me her weight last night was 910grams if that is right it will be the first time she has been above her birth weight, another great step forward. Thanks again for all the comments keep them coming...........and so another 24hrs ...................

July 9th 2006, Evening All, I think we will have to call these pics "Strike a Pose"! for both Father and daughter, as the days pass I think all are relaxing a bit!
Another good day at Addenbrookes, from our point of view,in that everything is stable and once again the doctors are pleased. Received a text this evening to say that Dilan has had her "breathy thingy", technical term, off for 15 minutes and that as she has done well they will try half an hour twice a day now until she can manage with out..... great news !
On behalf of Gareth and Jennie I would like to thank everybody who has sent cards and gifts they really do mean a lot too all three people at the hospital, as I am sure you will all understand the parents are a bit "Otherwise involved" at the moment, as is Dilan but they are truely grateful for them all, I would like to say a BIG thank you to my sister Wendy and brother in law Colin, they know why. XX. On the subject of family, come on Gareth's side all the comments are coming from Jens family and friends, are you lot in South Africa keeping up ? How about the french contingent? Someone in england would be good !!!!!!!! Seriously it would be good to know whose reding this Blog, we get 30-50 hits a day and neither family is that big! Who ever you all are thanks for the support.....onward to the next 24hrs.............

8th July 2006, Early post to night as we have visited during the day, New pics as promised, proud parents and and a wide eyed Dilan having a good nosey round.
Not much to say really, a great night, a great day, including the fact that she is now up to maximum milk intake, this has resulted in ALL pipes being removed from Dilan s arms and don't she know it, waggling about all over the place !!
Was at the cot side when her face mask was taken off this evening for breathing "exercise" nurse told me she is doing remarkably well. Last text of the night just received, all is well and Dilan is sound asleep on her tum as usual.....Onward to the next 24hrs >..>>>>>

7th July 2006, There are many thoughts in ones head today due to the events of this time last year in London, but one none of us would ever have had 12 months ago is that 12 months on Gareth and Jen would be parents........... WOOOOW! yet here we are. The new pic was taken yesterday, a very tired and sleepy little girl ! We now have a really nice pic of Dilan with her eyes wide open taken by the hospital, "Other Grandad" will scan it and send on to me so I can put it on here for all too see, thanks Keith, Once again all is well with Dilan, she is now up to 5ml of milk, and even bigger than that, I think, she spent 5 minutes with no breathing aid, this may now become a daily event, and once the staff are happy she can manage this alone they will start to extend this time, I sometimes have to step back and wonder at how well Dilan is doing, but never losing sight of the path still to travel.

A closing note, I have placed a counter on the site and see that people are visiting Dilan from all over, if you do read this Blog please do leave a Comment/Message as it would be great to know who you all are, and in years to come, how good will it be for Dilan to read ....... Isn't the internet wonderful !!!!!!!!!

Another 24hrs passes...............................

July 6th 2006 , As I said yesterday we have not been to see Dilan today, but Jen and Gareth have sent regular updates as follows: She was good as gold over night getting the award for "Best in Room" !!!! milk was up to 4ml and all is well. At lunchtime she was fast asleep, on her stomach, which how she seems to like it and so the proud parents went out for a while, she was taken off the insulin last night as her sugar levels seem to now be holding thier own. I had a call instead of a text this morning as it seems that the doctors are so pleased with Dilan s progress Gareth and Jen were feeling really bouyed by it, they are hoping that the only set backs now should be minor compared to what we may have expected, like short term ventilation, anti biotics etc, after another brain scan it would appear that the bleeding is no worse and, again, they do not see it getting any worse. This is all really great news, but like Jen and Gareth none of us should lose sight of the fact that Dilan still has a way to go, but HEY what a start !
Milk is is now up to 4.5ml and doctors are saying that if Dilan carries on as she is, it should be possible to remove the nutrient drip in the next 24 to 36 hrs, here's hoping. She has been out of her "fish tank" for nearly two hours this afternoon for a cuddle with her mum and dad, how good is that ?
Once again Dilan has settled for the night and Jen and gareth are returning home till tomorrow.

..........Another 24hrs !!!!!!!!!

July 5th 2006, I have to say that I will never get fed up with saying the same things each day if they are good, and once again the last 24hrs have been. this morning started with a message to say Dilan had had a a peaceful night curled up in her blanket and sleeping through. As of this morning she is now on 3ml of milk which she is coping with well, she has had to have a small bit of extra oxygen through her nose, but this is normal for a baby of her age !
By doctors rounds at lunchtime all is still well and Jennie and Gareth are boosted by the news that Dilan has put on 1oz in 24hrs, this is really good as it proves that she is keeping all the nutrients needed from the milk, and also passing all the proper waste. Visited this evening, milk is now 3.5ml and Dilan was VERY comfortably sound a sleep so we did not disturb her, there is no doubt in my humble opinion, that the change in Dilan is very noticable in the week since she was born, it is truely amazing what the people at Addenbrookes have achived for, Dilan, Jennie, Gareth and all of us, I am sure we will all be forever grateful to them.
Jean and I are having our first night at home since Jen was rushed to Bury last week, to morrow as we feel happy that all is as well as can be in the world of Mr G and Miss J ward. and it will be good for them to have some time on thier own, without Dilan s interferring old grandad worrying about !!! hopefully by Friday I will have some new pics to show you all. and so another PEACEFUL 24hrs passes .......................

July 4th 2006, well the first week is over and our little grand daughter has done her best to pass every test with flying colours, the doctors are pleased, the nurses are very pleased, the midwifes are pleased, and getting use to her name !!!!! At this stage we could not possibly have asked for more, and the parents are, of course, the happiest of all, for the first time since starting this record I can happily announce, as of this evening, all is well, but none of us must ever lose sight of the distance she still has to travel....... on that note another 24hrs passes :-)

July 3rd 2006, Both parents came home last night, and looked the better for it this AM, Dilan had a good night, and is now up to 1.5ml of milk per hour, that must be good, it was also the day for a lumber puncture in order to check cells etc, Jen says she was not overly bothered by it and later in the day all tests came back OK, Whilst I was visiting this evening a routine blood test was being taken from Dlian s foot.....she appears to have slept through the whole thing totally unbothered ! She has lost a small bit of temperature to night but as it stands this is OK, but should be watched over night.

Pics above show Dilan s first full face picture taken by the hospital and retaken by Gareth with our camera hence a bit blurry..... I don t think she was too impressed ! Second shot is of Jen holding Dilan, the white "BALL" next to Jen s hand is Dilan s head in her "Breathing cap"

So dear reader.................... Another 24hrs passes.

P.S. Late posting Gareth and Jen have just got home and Dilan s Temperature is back to normal and she has started a settled night.

July 2nd 2006. Finally we havea picture of Dilan that I can upload to the Blog. If you look very carefully toward the bottom left hand corner you will see Jennies thumb nail holding Dilan s hand, this will give some perspective of just how small she is !

I am, once again , pleased to say that the news is good, this mornings update from Jennie was a no change, quiet night, due to a soreness on Dilan s back she is now lying on her stomach and seems to be far more comfortable and relaxed.

We visited this afternoon and all is well, spent some time with Jennie and dilan, and both are as wonderful as ever, always good to see!! So once again, as I am always delighted to say another 24hrs passes...............

P.S. Gareth's tip of the day "If you are pregnant, always choose a midwife under the age of 40 as after that they seem to become grumpy and rude". I have to say that after my own experiences of the last few days he is SOOOOOOOOOOOO RIGHT !

1st July 2006, a new month, received a text from Jen at 9am saying all is well, a new pipe had to be attached during the night, to give Dilan anti biotics and caffine, this evidently is to aid in the retention of her bodily fluids, food stuff etc, this I assume in turn will aid weight gain. Visited this afternoon and was delighted to see Jen holding Dilan all be it still attached to all the pipes, I have not seen Dilan look so contented as she did at this time, a few whimpers but a suppose hearing Jens heartbeat and voice as would be in the womb, must settle her. So it seems once again things are good. Got a text from Gareth at 8pm to say the doctor had been round and, in his words, Dilan was "ticking along nicely", guess you can t ask for any more !
Yet another 24hrs passes.............

30th June 2006

The next great hurdle crossed today, Dilan has been "okay" for three days, all organs appear to be working, she is "peeing and poohing" The brain scan is still showing bleeding and although it must be watched closely as it could cause problems in later life, the general consensus is that , at this time , it is "normal" for a baby in Dilan's situation.
Jen has been officially signed off today so has been given a small private room next to the prem. baby unit, some where she and Gareth can stay as long as they want, day and night, unless a need of greater cause comes along........ fair enough I suppose.
I realy feel that even in three days Dilan has improved in all ways, but still a long way to go.. another 24hrs..

29th June 2006.
I am pleased to say all is still well today, there has been a few gliches, sodium levels up and down, same with sugar levels, but nothing that we are told is nt normal in cases like Dilan's.
Gareth is now coming home in the evening, this gives him a chance to recharge and Jen a chance to relax and build her own strength back up...... another 24hrs passes.

Day Three, 28th June 2006, 03.15 the phone rings, its Gareth, Dilan could hang no longer and had been born at 02.45 weighing in at 1lb 15oz and about 9 ins from head to toe ! after a quick look is whisked away, all is well and more news will be forth coming in 4 hrs. I guess we arrived at the hospital around 10am, Gareth looks shattered and tired but happy that all appears to be well, so begins the day to day hurdles for Dilan to get over. The first thing is that she is breathing on her own so after some hours on a ventilator it is removed and apart from the occasional time when she forgets to breath she is okay on her own, it seems that the next thing to look for will be internal organ function, something that can only be observed in time. jennie is back to looking wonderful and is being a real rock for Gareth and Dilan, I sometimes wonder how, as the mother, she manages to keep on smiling and being constantly optimistic, what a lucky guy my son is !
Finally the time comes for me to visit my grand daughter for the first time, as I walk in to the room with Gareth I realise what a daunting task this was going to be for me, what can I say she is tiny, connected to a million wires tubes and pipes, but perfectly formed and as beautiful as she could be.

A brain scan has been done and whilst there is a small amount of bleeding the doctors do not seem overly concerned, another hurdle crossed.

An observation at this point would be that I find myself feeling guilty when ever I am not in the hospital with my son and daughter in law, at work , at home, anywhere, all I want to do is be there for them all even though I know there is nothing I can do.

Still ever onward, 24hrs at a time..............

Day Two, 27th June 2006, Gareth and Jennie managed to get some sleep over night and are both feeling much more positive about things, Dilan is STILL inside her mother, doctors and nurses are amazed she is still unborn, not only that but the contractions appear to have stopped, this is something they had hoped for as the hospital she was in felt caring for a small Dilan would be difficult, though not impossible, and she would be better of at Addenbrookes in Cambridge, so after some discussion Jennie was rushed there and settled into a new, better enviroment.
After check ups Jennie and gareth were told that the birth was inevidable but the longer Dilan could stay inside her mother the better things would be, tests and things showed things were good for both, the steriods had kicked in and now it was a waiting game. For the first time in more than 24 hrs the parents could finally relax a bit the relief for us all was obvious to see !

Again, as a day closes I can t help but pass comment about the high cost of free health these days. £20 for two weeks parking, so for two cars, ours and Gareth's £40, T.V at £3.50 per day, plus a private phone line at 10p per minute to call out, nothing compared to calling in, the purpose of the phone I would have thought, at 39p per minute off peak and 49p other times, and of course we mus'nt forget the 30 seconds plus of introduction you pay for before you even get through to your patient !!!!!!! Then there is the cost of food £10 ish each every day. It really is a disgrace.

6.40am Monday 26th June 2006, the trama started with a phone call from a very tearful Gareth, my son to tell my wife and I that our daughter in law Jennie had gone in to labour only 27 weeks into her pregnancy, and that things were not looking good for the baby. After rushing to the hospital to be with them, we were informed that unless Jennie could keep the baby inside, there was very little hope of saving her,(We were already aware that the child was a girl), but if she could there was things that could be done. The first and main thing was to get steriods into her in order to strengthen the lungs as they would be unable to operate properly as they are very sticky and unable to open and close, the steriods would help the breathing process but in order to work they must be in the system for a minimum 4 hrs, this was at 7am so 11am was the absolute minimal time.
Of course this time was agonisingly long, but it did eventually come and go, the hospital staff were pleased and at this time told us that monitoring indicated that the baby was doing okay, but if she could stay inside for another few hours till 7pm it would then be possible too give a second dose of steriods which in turn would move things on again, this time came and the second lot was administered, again, if these could act for ANOTHER 4hrs, things would be even better. All the time this is happening Jennie is having regular contractions and we all expect the birth at any minute, but still both our girls manage to hang on in there !!
As we come to the end of day one I think it is worth mentioning that due to the privatisation of all things NHS, we have spent £20 on parking, and probably the same on Food, whilst you don t care about money, there has to be a better way to treat people whose only concern is thier kids , still more on that subject as the time goes on.

PREMATURE BIRTH, A GRANDAD'S STORY

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