Sunday

Charlotte was weighed last night at 4lbs 7oz or 2.1 Kilo's. Charlotte has therefore met her first objective. We knew her meeting the minimum going home weight wouldn't be a problem but in reality we are still 4-5 weeks at best away from bringing her home. This may seem like a long time but its worth bearing in mind that she is now 11 weeks old. Her slight cold has set her back a few days and because she has needed more oxygen she has not progressed with her feeding as a result, as she was finding it hard to breath and swallow at the same time. She did seem a bit better today and not so snuffly so lets hope she is on the mend. Getting her off the oxygen would be such a big step forward but this is just a matter of waiting. She is classed as having Chronic Lung disease but that is applied to any baby who has to be assisted with Oxygen, and she is currently back up to 0.02%

A new Nurse saw her a few days ago for the first time and asked us how many days old she was. Her jaw dropped when we said she was 76 days old. Charlotte seems so big to us and so large in the photos but in reality she is still very small in comparison to term babies. She is however now no longer the smallest on the ward.

There are some up to date photos of her on pages 1 and 2 of the September pictures which now show her in her cot and in some cute babygrows and cardigans. I hope you all like them, we think she looks very cute

Wednesday

Charlotte was seen by the eye specialist again today. She hates it so much, they clamp her eyes open to examine her and its very uncomfortable for her. Remarkably, her SAT's went to 100%, its almost as if she does better whilst under pressure (like her mommy!). The eye specialist saw no change with her eyes. The slight change he has seen in her retina is still there but he remains positive that the eyes will sort themselves out. He will return in 2 weeks to see her again. Wish we could forward time, but this has been the case for the last 12 weeks nearly.

After the eye specialist left I got her out for a cuddle. I decided that trying to bottle feed her would be too much for her. So decided to send her milk down her tube. She slept for the afternoon. She makes little noises when she is asleep, like somebody sighing heavily. She's probably fed up with the whole situation and needs a change of scenery!

Her eyes are so swollen that sometimes she now finds it hard to open them. It is her oxygen dependancy that causes the swollen eyes. They are even worse after the eye doctor has seen her. We are starting to think she may need to come home on oxygen. We will see how she progresses. It is simply a matter of new lung tissue growing to make her stronger so that she can breathe without the need for oxygen. Its a frustrating stage for us as parents. Not alot seems to change now from day to day. We are desperate to get her home and we feel we are so close, but also feel that the day will never come.

Sunday

Charlotte was weighed last night at a whopping 3lbs 14oz or 1.75 kilo's. She is weighed every Wednesday and Saturday night at Frimley Hospital but we will now update the website with her weight once a week on a Sunday.

I (dad) actually completed a full nappy change without assistance for the first time yesterday, and my little trooper had only done pee for me, I still have had no poo to deal with thank goodness. I also gave her my first bottle feed as mummy has started doing it during the week. She managed 15 ml out of her 37 ml and the rest via the tube. She is now fed this every 3 hours, a far cry from her initial 1/2 ml every 2 hours.

I asked the Doctor about the Heart Murmur and he said they have not heard it via Stethoscope since she arrived at Frimley on the 11th Sept. We know it was getting smaller at Portsmouth so there is a chance it may have closed or be closing. She will have a Heart Scan before coming home, which we have now been told could be by her original due date of 29th of October.

Wednesday

Charlotte continues to be stable. It really is a matter of waiting now and praying that she continues to do ok and that she can come off the oxygen and do well with her feeds. We can pick her up like a proper little baby now and for once she is no longer the smallest baby in the ward. Small babies are now the norm to us but to everybody else they would appear tiny. Charlotte would still appear tiny to anybody who was to meet her now. It is unfortunate that Frimley Park only allow parents and grandparents to visit as we know we just can't wait to introduce our little miracle to lots of people.

In full confidence that Charlotte will be with us soon we ordered her nursery furniture from Mamas and Papas and Mothercare on Sunday. Fortunately it all arrived this morning and we are now in the process of getting her nursery ready for her homecoming. Of course, her cot will be in our bedroom for quite a while after her homecoming but we wanted her room ready for her.

Thursday

Charlotte has gained a huge amount of weight. She now weighs nearly 4lb 3oz. So close to hitting target one of where she must be before coming home. i.e. 4lb 5oz. Targets 2 and 3 are coming off the oxygen and feeding without the tube.

Friday

I (mom) went to see Charlotte as usual today. Ive not had a good day as Charlotte appears tired and is a little bit snuffly. I saw the doctor straight away who was quite unconcerned about her snuffles. I said that I was worried as I did have a mild cold last week although I did keep away until I was better, but the doctor just said that if she has a little cold then it could be mine it could be anybody's. They do not give the babies anything if they have a cold but now Im very worried. The doctors have seen it all before but I havn't and this is our baby. But I guess we should take notice of what the doctors say.

So, Charlotte as a result did not take any feed by bottle. She was too tired so I decided to put her back in her cot and let her sleep and let her have her food via the tube. She is so beautiful when she sleeps, ok she is beautiful when she is awake too !! So, I sat there watching her for a couple of hours whilst she slept.

As a result of her feeling under the weather, she also needed a little bit more oxygen. Her SATS did drop a couple of times whilst I was there but this also may be because she came off caffeine yesterday. Charlotte has been having Caffeine supplements since she was born to stimulate her breathing. Premature babies tend to stop breathing for short periods so this stimulates them not to do this. So, looks like she is hooked on coffee before her first taste!

Monday

Day 64 - Charlotte continues to get chubbier. A proper little miniature baby. The grand weight of 3lb 7oz. Asked the criteria for her returning home. The nurse advises she needs to be a minimum of 4lb 5oz, off oxygen (she is currently on 0.01 to 0.03), be off all monitoring equipment, be 35 weeks gestation (she is currently 34) and be on full feeds by a bottle.

We are sure she will have no problem hitting that weight within the next 3/4 weeks, as she is gaining on average 1 lb every 3/4 weeks, but its a matter of waiting to see how she does with regards to getting off oxygen and then weaning her from her feeding tube onto the bottle. I have tried to explain to her that its much more enjoyable tasting the milk rather than it just appearing in her belly as if by magic but I think she is content with the easy way for now! The nurse today said she looked after Charlotte a couple of nights ago and its like having a little alarm clock as when Charlotte is due a feed she lets them all know!

We are hopeful that she may be able to finally move out of her incubator and into a mini cot within the next 3 weeks, another step forward.

Wednesday

14:15 Hrs Samantha rang with good news. After an anxious week of waiting the eye specialist has examined Charlotte again and believes the issue he noticed last week will rectify itself. Her eyes are developing normally at this point in time and he considers her to be well above the "threshold of concern". He wants to monitor her and will return every couple of weeks to check her eyes are still developing properly.

Charlotte is now mainly on 0.01 oxygen,sometimes increased to 0.02 when she is grumpy, and has now even had the odd half hour on normal air without the oxygen tube

Thursday

Charlotte hasn't had any visitors today. Mom has a cold !!! and Dad is at work, So, it could be a few days before I get to go and visit little Charlotte again. I don't believe it, what a time for a cold to come on. I don't feel too bad, but I cannot risk taking any germs into the Special Care Baby Unit. Anyway, We both rang the Hospital this morning, Charlotte was weighed last night at 3lb 10oz. She is also on 3 hourly feeds. They tried her with a bottle again last night and she had about half of it. We find that she falls asleep half way through. I know whats going to happen, she will be in a fantastic routine in hospital then the minute she comes home she will forget it all. However, we cannot wait for the day she comes home. For us to be kept awake all night by our baby Charlotte crying will be heaven. We can't wait for the sleepless nights. We love her so much.

So, I decided to sort out little Charlotte's wardrobe instead. She is getting quite a collection. Thank you to everyone who has bought her clothes and other presents. She is still in the "up to 3lb's" clothes but quickly getting too big for these. She will shortly be in the "up to 5lb's". The size after that is "up to 7.5lbs" and then finally she will be in standard newborn clothes.

Charlotte will be sending out thank you cards to everyone very soon as she is really pleased when we tell her she has quite a clothes selection.

19:00 Hrs GREAT NEWS !!! We have just rung the Hospital to see how Charlotte is, and were informed that she had just been moved from the Incubator and promoted to a Cot,the Doctor's had decided she was finally well enough, 9 weeks and 4 days after she was born. We had not been expecting this so soon.

The Pictures section has been redesigned and all the photo's are now arranged by Month,new ones will be added on a regular basis.

Monday 10:34

Samantha rang with great news, Charlotte was weighed last night at just under 3 Pounds and 2 ounces,she is above the 3 pound mark at last. When she reaches 3 pounds and 5 ounces she may be moved from the incubator into a cot.

Even better news is that Frimley Park Hospital have agreed to take her tomorrow , assuming they have no emergencies. There is a spare incubator at Frimley Park, Portsmouth have a spare portable incubator for the journey and the ambulance has been arranged.No more long journeys to Portsmouth and I can now see her every day of the week and not just at weekends.

13:05 The Doctors have just scanned Charlotte's heart and although it can no longer be heard via a stethoscope,the duct is still open, albeit less than half the size it was. The Doctors feel that there is no immediate need for Surgery as long as it is not causing her any problems. They will delay an operation as long as they can, and it is still possible it might close by itself.

8 weeks and two days after her birth our little Angel is coming home from St Mary's Hospital, Portsmouth to Frimley Park Hospital,Surrey where it all began on the 15 July 2007. It is scary to think that even at 8 weeks old, she is still not due for another 7 weeks

Tuesday

11:30 Samantha has just rung to say Charlotte has just left Portsmouth by Ambulance for Frimley Park,Surrey YIPPEE!.

Samantha and I arrived in the Neo-Natal unit at Frimley 13:00 hrs and to our great delight our little princess was wheeled into the unit, by the ambulance crew, in her mobile incubator at 13:10 hrs so we were there to greet her when she arrived.

She was transported "nil by mouth" and she faced 4 hours without any milk, for Charlotte, this is a lifetime. She was not amused by this and showed her displeasure both physically and vocally, we have never heard her scream so loudly. This does not bode well for the future. She looked so cute strapped into the incubator with her miniature safety belts. She was immediately weighed upon arriving at Frimley Park and she is just under 3lb 3oz.

We spent all afternoon with Charlotte, she remained unsettled and annoyed and showed this by pulling out her feeding tube from her nose. This was a mistake as she then had to have a new feeding tube inserted. We left her early evening after she had received a feed and we tucked her up and she went fast asleep. It is so good to have her so close.

Wednesday

Charlotte had her first Doctor's ward round at Frimley.They are very pleased with her. They reiterated what the Doctor's at Portsmouth said, that babies are not expected to survive the fungal infection she had, and that she is a fighter and a miracle baby. In fact 75% die from it within the first 5 days after birth. Samantha tried her first bottle feed today, the first time milk has touched Charlotte's lips and she really gave her first little smile, and managed 10 ml, and then had the rest via the feeding tube.

Charlotte has been elevated to the status of Britain's youngest and smallest model. A representative, visiting from a company designing outfits for very small premature babies, saw Charlotte and decided she met their requirements being both the right size and very beautiful. As they needed to see whether what they had designed and made was the right size. So, they measured the outfits against Charlotte whilst Samantha gave her opinion and recommendations for changes to make the designs more practical and better fitting, based on her experience of "premature outfits" bought from various retail outlets.

Thursday

The eye doctor saw Charlotte yesterday. With premature babies as young as Charlotte there could be issues with their eyes developing properly. When I spoke to the nurse today she just said that he needed to come back next Wednesday to make a judgement. This is very difficult. We have to wait to know whether Charlotte will have any issues with her eyesight. Again, we pray that everything will be ok. There are so many things to worry about. But as always, we have to be positive.

The doctors will continue to scan her brain and to test her CRP levels to ensure that the fungal infection does not return. We are sure that our little girl has whipped that for good but the doctors have explained that these type of infections have been known to return. They do however remain very pleased with Charlotte's current progress. The consultant today said "she is really quite a well little girl"!

The Heart Duct is still open and if it has not closed by the time she is about 6 months old then she will require surgery

Monday

Today Charlotte is 50 days old. Happy Birthday little one. Mommy & Daddy love you very much

Charlotte has had to endure more than most people have to endure in a lifetime. Countless blood transfusions, hundreds of blood tests, 40-50 cannula insertions, a 6 week course of antiobiotics to tackle yeast infection and cysts forming on her brain, through oxygen starvation at birth, to name a few. The latter as previously said will be a case of waiting to see how this effects her long term.

Charlotte however continues to fight. Her spirit is amazing. Even in her first few days of life she showed the fighting spirit that would get her through to her 50 day birthday. We are so proud of her.

Today Charlotte received her last dose of antiobiotics of the 6 week course. She will now be free of the cannula and am sure this will make her a happy little baby. The doctors had struggled in the end as her veins were breaking up but they managed to get her through to the last day. We pray that the yeast infection does not return and that this long dose of antibiotics has done the job and killed the infection for good.

On her 50 day birthday, Charlotte has now exactly doubled in size. She now weighs an impressive 2lb 10 oz. She is still very small, but has a definate double chin. I said to her today that she should keep piling on the weight. Then said she would probably spend the rest of her adult life trying to lose it ! She now starts to fill out her first little vest a bit better and am sure that she will soon be in the next size clothes (up to 5lbs) very soon !

It is also very likely that Charlotte will be one step closer to home within a week. Dependant on the bed (or incubator) situation at Frimley Park she could be transferred by the end of this week. Although we will really miss the doctors and nurses at Portsmouth who have done an amazing job, we will feel as if Charlotte is nearly home. When at Frimley she will be just a 6 minute drive away from us, as opposed to an hour and 15. This will be fantastic. To feel she is so near will be almost feeling she is at home.

Today, I gave Charlotte a little wash and a little massage with some oils. It helps her to relax knowing that not every hand that enters the incubator is one that is going to stick a needle in her. She does enjoy the massage.

We would like to take this opportunity to say Hello to all the people that are following Charlotte's story. The support that we have received over the last few weeks has been overwhelming and we thank you all. We have received many cards and presents for which we are very very grateful and many many messages of support that really helps us.

The 'Contact Us' section of this website is now working should anybody wish to contact us directly then this would be lovely and we will reply to every email we receive.

Tuesday

10:30 AM

Samantha has rung from the hospital this morning. The Doctors are going to look through Charlottes notes as there is disagreement as to whether the antibiotics should indeed have finished yesterday or whether it in fact has another 4 days to run. This would delay her return to Frimley. Once the course is finished they need to monitor her CRP levels, (C-Reactive Protein), in her blood for a couple of days to confirm the infection is gone. This measures the levels of the molecule in her blood, an infection will cause an increase in molecules and a high reading, as antibodies are produced to fight it.

The specialist has also looked at her recent brain scan, there is no change, there are no more cysts but the spores are still showing on her brain. He thinks they are dead but that they will never disappear. Because this condition is so rare they cannot tell us what damage, if any, either the Cysts or the spores being present may do to Charlotte's Brain. Because of the spores being in the brain they also cannot be sure that the infection may not return, no one knows!. We must try and put this out of our minds, however hard it may be, as it could be years before we really know the outcome as to whether she may be physically or mentally disabled or what form it may take. Not knowing is the hardest part.

12:45 pm

Samantha has just rung. The specialist has confirmed they made a mistake and she has 4 more days of the antibiotics course to run. Poor little Charlotte,she thought it was all over. Kevin, the Doctor is currently trying to reinsert the needle and cannula sleeve, which was finally removed yesterday. Her course will now finish Friday so they will probably decide Sunday or Monday whether she is stable enough to be transferred,but the date obviously depends on whether Frimley Park Hospital have a "parking bay" for her incubator. We will now hope she might be moved towards the latter part of next week.

I would just like to thank everyone who has sent messages of support to Samantha and myself via the "contact us" section and we will endeavour to reply to you all as soon as possible. These go directly to a Hotmail account I setup in Charlotte's name so that hopefully she can read them in years to come

Wednesday 10:30 am

Samantha rang to say the doctors have not been able to hear the heart murmur for the last couple of days,they think the heart duct may have somehow spontaneously closed itself. They are going to scan her heart later this week. She would have had heart surgery long before now if it had not been for the Candida infection, so at least something positive may have come from it.It will be great if she does not have to go to Southampton Hospital for the heart surgery.

Friday

Charlotte had her last course of antibiotics 2 pm today. The Doctors rang our local Hospital yesterday to try and arrange her transfer sometime over the next couple of days, like to check the blood results for 48 hours after the last antibiotic course before any transfer. Frimely Park responded by saying they were not willing to receive her for another couple of weeks. They are concerned that they do not have the equipment or resources to cope should the brain infection return.

St Mary's, Portsmouth, then rang St Peter's in Chertsey to see if they could take her , they are probably 25 minutes away compared to 6 for Frimley. The Doctor at Chertsey agreed to take her, incubator and all, but also very kindly offered to ring the Doctor at Frimley. He offered to travel from Chertsey to Frimley with the head scanning equipment and act as their backup 24/7, if they would agree to take her asap. we hope he can persuade Frimley Park to accept her as we would prefer she stay in Portsmouth and not have to face two moves.

Charlotte has continued to put on weight. A nurse had weighed her overnight but said she was still 2 lb 10 oz. Samantha disagreed, and had poor Charlotte stripped naked, most undignified, and personally put her on the mini scales. Samantha weighed her at 2lb 14oz. Another 7 oz and she will be able to be transferred from her incubator into a cot.

Saturday

My 7 week 6 day unbeaten run finally came to an end today, I finally assisted Samantha with the changing of Charlotte's nappy, for the first time, although she will no doubt inform everyone that she did most of the work.

We are still waiting with baited breath to hear if she can finally be transferred to Frimley Park Hospital this coming week.