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.............
