Monday 31st - New Years Eve

As one gets older New Years Eve becomes a time for reflection on the past and expectations for the future but in December 2006 we could never have dreamed just how much our lives would change or what we would have to face in 2007.

We spent New Years Eve 2006 at the Lakside International Hotel complex in Frimley Green,Surrey at an Abba/Bee Gees Live Band 70's night with buffet and after Disco and excitedly discussed plans for our wedding, to be held at the Basingstoke Country Hotel, on the 13th October 2007. We had also spent considerable time planning the itinerary for our Honeymoon which was to take place in the Rocky Mountains in Banff,Canada.

However things don't always go according to plan and, firstly, discovered in February that we were to have a baby due 29th October (thank god Samantha had not posted the deposit cheque for the Wedding)and, secondly,had the shock of Samantha going into Premature Labour on Friday the 13th of July.

The months that followed were undoubtedly the hardest and most stressful time we have ever faced but now on New Year's Eve 2007 we are celebrating with our beautiful daughter. It is a bit quieter than last year but a whole lot better.

So, 2008 awaits us. We know we may still face some tough times ahead with Charlotte but as we say goodbye to 2007 we celebrate her being our miracle baby and the most remarkable little fighter, who beat the odds and made it here to this night to make it our happiest New Year's Eve ever.She has had more issues to deal with than most people face in a lifetime and she is fighting them all.

HAPPY NEW YEAR! THANK YOU EVERYONE FOR YOUR SUPPORT. HERE'S TO 2008

Christmas Eve

Charlotte had her home visit from Jennifer the Neo-natal sister AM. Head size is normal. She took a blood test and phoned PM to say her "levels" are almost normal and thinks she will only need her medicines for her Metabolic Bone Disease for another month, she is almost there!. She weighed her at 8 lb 8 oz.

Friday 14th

Charlotte was visited by the Health visitor today and was weighed. Piglet Low, (as she is now known) has gained 14 oz in the last 2 weeks and is now just over 8 lbs. She also had her first solid food last night, 2 teaspoons of HIPP stage 1 Organic Baby Rice.

Thursday 13th

RBS Children's Charity Awards

The RBS/Daily Mail are giving away £1000,000 to Childrens Charities. 91 have been chosen to receive £10,000 each and 10 charities have been shortlisted, including BLISS the premature baby Charity (www.bliss.org.uk), for the top prize of £100,000.

BLISS not only runs a parent support network but just as importantly helps fund the research and development of the equipment in the Neo-Natal Intensive Care units, of which Charlotte spent 9 weeks in an incubator at St Mary's NICU in Portsmouth,Hampshire and 5 weeks at Frimley Park, Surrey. The equipment the NICU team had at their disposal and care they gave her undoubtedly saved her life.

Pages 70-71 of today's Daily Mail features the 10 shortlisted Charities,with a brief explanation of each and how they would use the money and BLISS are using Charlotte as their case study for the Award. Samantha did a very short telephone interview for the Daily Mail yesterday which is featured under the BLISS section on page 70.

Although they are all very good Charities it would be great if you would all consider voting for Bliss. You can do this by sending an email to bliss@dmail.entries.co.uk with RBS Childrens Charities Awards in the subject. Voting lines close on 16 December and the winner will be featured in the Daily Mail on Boxing day.Please forward this to as many people as possible.

Wednesday 12th

We had great news today. Charlotte was diagnosed with Retinopathy of Prematurity at 8 weeks old, an abnormality in the growth of both eyes which can lead to sight problems or even blindness. She has been seeing an Eye specialist every 2/3 weeks for the last 13 weeks, which has been a worry. Samantha took her to Hospital this pm and the Consultant was delighted to discover that the abnormality has almost completely disappeared and he has discharged Charlotte.

Jennifer,the Neo-Natal Sister, also measured her head size which is normal and thinks she looks better, and is not really showing symptoms of fluid on the Brain. We hope that this may also be resolving itself.

We also asked about weaning her,Charlotte has been demanding 600-700 ml of milk daily and often keeps us awake all night crying , as if milk alone is no longer satisfying our greedy little piglet. Jennifer has said we should try some baby food. She remarked how much bigger and longer Charlotte has become during the last 2 weeks,(she has inherited my long legs)and seems almost the size of a newborn baby now.

Sunday 9th

As we near Christmas we are starting to feel a little excited yet apprehensive. We still await an appointment at Great Ormond Street but as Charlotte shows no severe symptoms of 'Water on the brain' then we remain positive and hopeful that somehow what they found on the CT scan will sort itself.

Charlotte had Nanny and Grandad from Birmingham visit this week. They fell totally in love with her and when they left yesterday they found it very difficult to leave her. It was a lovely week and it gave me (mum) a little time to get prepared for Christmas. I still did all the Christmas shopping on the internet so hopefully all will be delivered on time

We put the Christmas tree up and lots of decorations around the house this week. The house looks great. We are to have a quiet Christmas. Just the three of us as a family. When Charlotte was born, all I kept saying to her was 'just get home for Christmas sweetheart'. Well, she did that in plenty of time. We just pray now that she doesn't need to go into hospital before. But if she does then we will accept that as Charlotte and her health is too important

The first December photos will be uploaded tomorrow.

Sunday 2nd

Charlotte had a visit from Jennifer, the NICU sister from Frimley Park Hospital, Surrey, on Friday to weigh her and take blood samples to check how the medicines are dealing with her Metabolic bone Disease,(which they are happy will cure). She also examined her and measured her head to see if the fluid on her brain has worsened her condition. So far it is good news,she is stable and her head size is perfectly normal, it is not considered serious enough to warrant more than monitoring. She is still only showing only very minor symptoms which they are really not concerned about at the present time.

We are more concerned about how greedy our little piglet is becoming, some days we seem to do nothing but feed her, She has at least 80 ml every time, often as much as 160 ml in under 2 hours and never goes more than 2/3 hours before demanding more milk. She is having 600 ml plus per day

Charlotte now weighs 7lb 2oz. A steady weight gain. She has nearly been promoted to standard newborn clothes also. Depends on what shop they are from !!

Saturday 24th

We are feeling so much more positive today. The Doctor rang late last night and said the previous Brain scan had been completely clear so this is a recent development. As it is in the very early stages it is very unlikely any damage has been done, it has just made Charlotte more irritable.He is happy for her to just be monitored at the moment and thinks it may even resolve itself. He will see her again in a week or so.

Like most premature babies, charlotte is very tough and the most beautiful baby in the world , not that we are biased, so we have faith in her. She is also not deaf, she may have a partial hearing loss which will be improved by hearing aids, or it could be due to a blockage in the inner ear canal which they have now identified she has in both ears.An operation may rectify this. If she does need hearing aids then so what, it is no worse than the fact that without glasses or contact lenses, anything more than a couple of feet from my face is just a blur. It probably wont be long before hearing aids are replaced by an implant anyway.

Thursday 22nd

Today is a tough day. Charlotte had her brain scan this morning. She has had so many that if we were honest we were quite relaxed about this appointment. We knew the problems and had come to terms with that. However, we have been given some very upsetting news. Charlotte has water on the brain, the can showed her Ventricles are swollen. Her head had not been measured for about 3 weeks, also the time of her last head scan and everything was fine then. They measured the circumference of her head after the scan and it is much larger than it should be. This could be a result of her original thrush fungal infection. She will need a more detailed MRI scan to confirm the way ahead, but it is possible she may need to have a shunt (tube) surgically inserted into her brain to run down into her stomach so that the excess fluid can drain away.

This all seems like a straight forward procedure but having water on the brain may cause further brain damage. We are hopefull that as she has had regular brain scans and this has been caught early that this will not be the case. The shunt will need to stay in for life, and this also can cause complications if the tube becomes infected and could result in further operations in her life. The fluid and hearing loss could be indications that she has a form of Cerebral Palsy

Its days like these where we find it difficult to find the strength to be positive. But quite simply we have to and we will continue with our positive approach. Afterall, she has beaten the odds so far so we are sure she will continue to do so. Charlotte of course remains totally oblivious and acts like a normal baby which has to be a good sign.

Wednesday 21st

Charlotte had her latest appointment with the eye Specialist at Frimley Park Hospital today. She has been going every 2/3 weeks since her retina abnormality was discovered when she was 6 weeks old. The condition remained static until 3 weeks ago when he detected signs of slight improvement. We are greatly relieved to at last have some kind of positive news. The consultant has seen great improvement since her last saw her. He wants to see her again in 3 weeks time but is optimistic he will be able to discharge her then.

The Retina abnormality can resolve itself, as it appears to be doing in Charlotte's case, but if not then laser surgery is required and if that does not work it will worsen and can lead to blindness. It has been a great worry for us over the last 12 weeks and our sense of relief is unimaginable, especially after the news about her hearing.

Monday 19th

Charlotte had her hearing tests with the consultant at the Royal Surrey Hospital in Guildford today. It was not the news we were hoping for. Over the past 4 weeks since Charlotte returned home, we were sure we saw her react to noise, although usually loud noises such as the doorbell going when it is quiet. We therefore were quietly confident that there would be no issues. There are issues. The consultant said that there was a level of hearing detected but they only saw a reaction in her brain to the highest level of noise, she is therefore now currently classed as having hearing loss.The main test detected a slight reaction at the highest level of noise in her left ear but nothing in her right ear.

During the tests, it also showed she had a build up of catarrh in both ears. This could be a reason why she is currently suffering hearing loss, however, they cannot be certain. It may well be she has glue hear which would mean in the future having a minor operation to fix this to restore her hearing. If this is not the cause and it is a genuine case of hearing loss then Charlotte will need to be fitted with hearing aids. We will receive a visit from a specialist who will do an assessment during December and we will then go back to Guildford during January so that they can decide on a way forward.

When all this began, we were warned that we would have good days and bad days and today has been a bad day. It is exhausting attending all these appointments only to be given bad news, or to be told its inconclusive and just a matter of waiting and to come back at another time. However hard these days are, we always remind ourselves that we are so lucky to have our tiny miracle home with us. The positive news is that at least hearing was detected, however poor it may be. This gives the doctors something to work with and if she needs aids then so be it. As she is so small however, it is doubtful they will consider fitting aids until well into next year. We will just need to make sure they are pretty pink ones.

She is seeing the eye specialist at Frimley Park Hospital on Wednesday for the latest checkup on her retina abnormalities. They had shown slight improvement at her last checkup 3 weeks ago, we are hoping we will have some positive news. She going to Farnham hospital for a follow up Brain Scan on Thursday

Friday 16th

Charlotte had her weekly visit from the Health visitor today and was weighed at a massive 6 lb 10 oz.We still cannot decide as to whether we should say she is nearly 18 weeks or 4 weeks old, it is most confusing. Do we go by the day she was born or the day she should have been born.!

Friday 9th

Charlotte had her visits from the Neo-natal sister and Health Visitor today. She had a blood sample taken (she was not happy about that) and was weighed and is now officially a massive 6 lb 5 oz, which is exactly 5 lb more than her lowest weight. We will be uploading the latest November photo's in the pictures section tomorrow.

Thursday 1st

The Neonatal sister came Tuesday to check Charlotte and weighed her at 5lbs 13oz. Samantha took Charlotte to Frimley for her latest eye checkup. She is still classed as a "level 2" which the Doctors hope will resolve itself over time. Level 3 means the eyes will require Laser surgery and level 5 means nothing can be done and there is a high chance it can lead to serious eyesight problems or even blindness. For the first time since she was 6 weeks old the eye specialist has detected a slight improvement in her condition and will check her eyes again in 3 weeks, by which time he hopes to see a significant improvement

Samantha was also given Charlotte's discharge letter with a summary of the issues she faced. Her discharge letter is unbelievable.Many of the problems listed are ongoing at her discharge and will require continued monitoring. The extract below, from her discharge summary, shows just what our little Charlotte has already had to face in her short life.

Discharge summary

• Born classed as Extreme Prematurity - 24 weeks (low % survival rate/high % disability rate - frequent monitoring required through early years).
• Had Respiratory distress of newborn - Required ventilator to breath for a period following birth.
• Had Brain infection Fungal Candida Meningitis- cranial ultrasound still shows multiple lesions associated with fungal infection.Longterm implications - not known.
• Suffered Aneamia of prematurity - regular blood transfusions necessary during early months.
• Had Patent Ductus Arteriosus - (Heart Murmur), Heart Duct still open at birth.Heart Surgery not now required as Duct believed to have closed whilst at Frimley Park Hospital.
• Has Retinopathy of Prematurity - Retina abnormalities level 2, ongoing monitoring of eye growth required,every 2/3 weeks. Next Appointment with Eye Specialist at Frimley Park 21st November.
• Suffered Chronic Lung Disease from birth- On oxygen support from 24 until 38 weeks.
• Has Metabolic Bone disease - Requires various medicines daily until weaned to cure and ensure bones grow properly.
• Has two 2 clusters of Brain Cysts - result of Fungal Brain infection. Long term implications/disabilities not known before 18-24 months old.Ongoing Head Scans required.Next Head Scan at Farnham Hospital 22nd November.
• Hearing tests - both failed, Referred to see specialist at Royal Surrey Hospital in Guildford 19th November.
• Extreme Prematurity - immature immune system - very high risk infection. RSV injections required monthly for next 5 months to boost immune system.

Its really scary reading her discharge letter. If we really thought about things too much then we would never enjoy our little baby. We would spend our time just worrying about the future. But, as always, we refuse to be negative, we refuse because our Charlotte refuses to give up and continues to defy the odds and to prove the experts wrong. We are so very proud of her and her fighting spirit.

Sunday 21st October - Charlotte's Day

We are up early.It feels like Christmas Day but there is no Christmas Tree or fairy lights. It has the same feeling as Christmas Day, it is cold and frosty outside. A bit misty but it looks like it will be a beautiful day for our gorgeous daughter to make her trip home. Its the same feeling you got when you were little and waiting to see what Santa had brought you. However, our presents are not under the tree. Our present is waiting in hospital for us.

We will come away with her diary of appointments. There are a lot to attend. She needs follow up hearing tests as her first tests came back as unclear. This does not necessarily mean there are hearing issues but its a big worry all the same. It would have been nice to get just one test a positive first time round. As always, waiting is the hardest thing. We will be positive as always. She has her monthly RSV jabs to attend at Frimley for the next 5 months, to boost her immune system. Follow up eye examinations every two weeks until her eyes are given the all clear, follow up doctors appointments etc etc. The list is endless but this is to be expected. The main thing is that our daughter is coming home today.

12:14 pm. Charlotte arrived at home. The website has been updated with a special homecoming section and additional homecoming photos taken today have been added to the pictures section.If you have a soundcard then turn up the volume and go to the homepage.

Saturday

Charlotte had her first weekly visit from the Neoanatal sister on Wednesday. She took a blood sample and weighed her, at 5lbs 8oz. It has been pretty scary and daunting to suddenly have such a little baby to look after and like most parents we are learning as we go along, though we probably tend to panic more over the smallest things, because of the issues she may have to face.

Charlotte is due for her next fortnightly appointment with the eye specialist next wednesday, and we are praying that we may soon have good news that her eyesight will be okay. We have also got an appointment 19th November 10:30 am to see the hearing specialist at the Royal Surrey Hospital in Guildford, where we will learn as to whether she problems with her hearing or not. It will be great to finally have an answer to both. We also have various supplements and vitamins on prescription to give her daily, which she may need for up to a year.

We have also quickly learned that we are not in charge of little Charlotte, oh no, she is very much in charge of us and is learning quickly!. In two days time,Charlotte will finally be full term as her original due date was Monday 29th October.

Monday.

Charlotte was weighed saturday night and has now reached 5lbs and 2oz! Samantha and I had an 8am meeting at Frimley Park to have Resuscitation training. We saw Charlotte first and were delighted to see both the feeding and Oxygen tubes gone. She has been off Oxygen for 24 hours, it is early days yet but it is now possible she may not have to come home on oxygen. It was the first time we had seen her face without any tubes and she is so beautiful. It was an emotional moment seeing her breathing without the aid of machines or oxygen.

The Doctor was doing his ward round and examined Charlotte first as we were there and said he is very pleased with her progress and that she has exceeded all their expectations.He checked her reflexes and said neurologically she seems to be reacting like a normal baby and discussed whether we wanted an MRI Scan which is a much more detailed brain scan but we decided against it. If she does have any disabilities resulting from the Brain Cysts or fungal infection then there is nothing more anyone can do anyway. If she has problems in the future then we will deal with them, if and when they happen, and not spend the next 18+ months worrying when she has a chance of turning out to be a normal healthy baby. We will love her whatever.

More good news is that her Heart Duct has closed and the Doctor thinks her homecoming date may be brought forward to Monday 22nd October, exactly one week before her original due date. She had her immunisations today and may be poorly as a result for the next few days. At the moment everything is on standby regarding her coming home on oxygen. If she stays off oxygen then she should come home Monday 22nd, if not then she will have to come home on oxygen probably Thursday 25th and we will need to attend a discharge meeting.

Thursday

The October pictures have been updated with photo's taken yesterday and are the first ones to appear where she has no monitors, oxygen tubes or wires attached to her. What a clever girl we have. She is absolutely beautiful. When you compare those early pictures in July to the ones now we cannot believe how far she has come. She was weighed last night at 5lbs 4oz,which is not a great gain but she has been switched to ordinary milk and is having to work harder for her feeds, as they are all by bottle now and not via a feeding tube.

The only criteria left for Charlotte to meet, in order to come home, is 7 days on normal air, and she has been off Oxygen since last Sunday, so we spoke to Frimley Park and asked if there was any possibility of her coming home this Sunday. There is a lot of paper work and further tests to be done but they have agreed, so we hope to be bringing our little princess home on sunday morning, in 3 days time!.It will be exactly 14 weeks to the day from when she was born

Saturday

Charlotte had her two hearing tests yesterday but did not pass them. The Doctors are concerned and have referred her to a specialist at the Royal Surrey County Hospital in Guildford. It could be serious or could be simply a blockage but we wont know for about 4 weeks. It just seems so unfair when we already have the Brain issues to worry about over the next 18 months and also have been waiting to hear about her eye problems, we just wanted one test to have a positive result the first time. However, we have to pick ourselves up and remain positive and look forward to her coming home tomorrow. We will adding a special homecoming section which will be on the website for Monday morning.

Sunday

Day 84. Charlotte was weighed last night and is now 4lbs 13oz. It is hard to believe that we are now in the 13th week and although Charlotte was born on the 15th July, Samantha went into labour on Friday the 13th!. It has now been over 3 months since our Angel was born and we still don't really feel like a proper Mummy or Daddy.I can't answer for Samantha but it still has not sunk in that I have a Daughter and it will not until our little princess finally comes home.

Having a very premature baby is without doubt one of the biggest rollercoaster rides, emotionally exhausting and stressful thing one can ever face but it is incredible how tough these little babies are, so for anyone else who might be faced with a premature baby, never give up hope. They may seem very small and delicate and face what might seem overwhelming odds but they will surprise you as to just how tough they really are.

We got to the Hospital with a new change of clothes and Samantha dressed Charlotte in them just before I tried bottle feeding her which turned out to be a grave mistake, as I am not quite as proficient in this or nappy changing as Mummy. Charlotte vomited milk over her new change of clothes due to my being too nervous about patting her to wind her, I had to ask Mummy to finish her off and change her outfit again. It was decided I had better not try changing her nappy and outfit or feeding her again until she comes home as I made a right mess of it, she still seems so small,precious and delicate to me

Monday

Charlotte has received a visit from Nanny and Grandad (Mummy's Mom & Partner). They had not seen her since she was 2lb 2oz and were amazed at how different she looks now. Charlotte decided to celebrate the visit by playing up. She decided she would do everything possible to embarrass me (Mummy). Her antics included pooing on the sheets in between the quickest of nappy changes, deciding not to take her bottle and being sick everywhere so I had to change her clothes and nappy again and then weeing all over the sheets between nappy changes.We will need to be quick with this little one I think.

The doctor saw me today to talk about Charlotte coming home. We never thought we would ever get to the point where we are discussing this. We have been given a booklet about going home on oxygen. We need to study this and return tomorrow to talk about any concerns we may have. At that meeting, a provisional date will be set for her homecoming. The doctors can't say whether Charlotte will need home oxygen or not, but have decided to get the ball rolling now just in case she does.It will be a bonus if she does not. Judging by her behavious infront of her grandparents, our life will never be the same again once she returns home. We can't wait. So watch this space. We hope tomorrow to be able to announce her provisional coming home day.

Tuesday

Charlotte has a provisional coming home date of Thursday 25th October. She will more than likely now be coming home on 'home oxygen'. They cannot tell us how long she will need oxygen, it may be weeks it may be months. But just to have her home will be wonderful. She has a new friend called Imogen. Imogen will be going home one day before her and also needs home oxygen. I think Charlotte has made her first friend. We are so excited at the prospect of her being home but also very nervous.

Friday

Charlotte was due a blood transfusion today as her Haemoglobin count has been low for the last week but they did a final blood test this morning and it has returned to normal which is great, as she would have needed a Cannula needle to be inserted into her arm again, which she would have hated. We are again in the position where we are unable to visit Charlotte. We have both caught yet another cold,so we have to think of Charlotte and stay away, however difficult that may be. we phoned the hospital today to be told that she managed 6 hours off oxygen overnight which is a record for her. If she manages to come off oxygen before coming home, the hospital need at least 7 clear days to monitor her to ensure she does not require it. This could be a reason for not hitting the homecoming date of 25th October but we will wait and see. We would obviously prefer her to come off so if it means a few more days in hospital then so be it.

Charlotte also received a jab yesterday which will give her antibodies to fight RSV (Respiratory syncytial virus). This virus is common in children during the winter months and symptoms include coughing and wheezing. We had not heard of this before but many of the colds or sniffles that children get are caused by this particular virus. People can carry the virus without symptoms for several weeks. The jab which Charlotte received is only given to high risk babies such as Charlotte as the course of injections costs several thousands of pounds. It won't stop her catching the virus but it will help her fight it, and She will receive a monthly jab for the next 5 months. Before the jab was developed very young babies such as Charlotte would become very ill and often have to go back onto a Ventilator.

This is why we have taken the decision to restrict visiting in her first few weeks back home. Although we understand that lots of people will want to come and visit Charlotte and similarly we want to show off our beautiful baby, but we have to think of her and put her first. I hope everyone who would like to see her after her return from hospital will not be offended if we ask you to wait 3 or 4 few weeks. Please remember that Charlotte is not like any other newborn baby. Any infection could make her seriously ill. We have been told to avoid crowded or public places, avoid air conditioned buildings and to ensure anyone who is to come into contact with Charlotte washes their hands thoroughly with anti-bacterial soap . If anyone should develop a cold or any kind of infection before visiting then we would have to ask them to stay away until they have fully recovered. Also please do not be offended if we restrict anyone from holding her until she is a little older as we need to limit the possibilities of her catching infections until she has a proper immune system.

Meetings have now been organised with the hospital to discuss her discharge. We will also receive training next Monday on infant resuscitation,and what to do if she stops breathing or turns blue due to insufficient oxygen . We will be provided with a Apnoea alarm which will sound if she stops breathing for more than 20 seconds. We are also planning to spend next Friday overnight in hospital in the parents room with Charlotte. It will be the first time we will be alone as a family and we are so excited. We know we won't get a minutes sleep, especially as premature babies tend to be noisier. One of the nurses yesterday mentioned that Charlotte was the noisiest baby on the ward !