25th October

After 96 days in hospital, I'm delighted to report that Briony was finally discharged yesterday. All quite emotional and it felt very odd driving her home yesterday. Ironically, it was her expected due date. It seems odd to think that she has been here 14 weeks.

Family Chaffin will spend the next couple of weeks trying to get to know each other properly when Stephen's paternity leave starts on Wednesday.

So this is the end of one journey, but the beginning of another. There are follow up appointments and people dropping in to check on her daily for the next couple of weeks and then less frequently after that.

I hope that you have enjoyed the blog in its time and it has helped you feel part of our little lady's first few months of life.

13th October - light at the end of the tunnel

A great day today....

After our little battle of wills on Monday I can report that Mrs Chaffin was indeed the victor! Briony finally succumbed and fed at around 4.30pm. Yesterday and today there has been no looking back - she has even put on weight which we weren't expecting (neither were the nurses to be fair) following the change.

Like the Chilean miners, there is now light at the end of the tunnel. The big news of the day is that we have a discharge date! Well 2 dates to be exact. It will either be next Thursday or the following Wednesday depending on when the oxygen contractors can swing by our place and install all the kit that Briony will need. Briony's second set of immunisations will be on Tuesday next week so they need to just make sure that she is OK following those. Cue rushing around in Mothercare buying all the bits and pieces that I thought I had got a while to buy. Stephen and I are both hugely excited as we have waited so long for this moment!

Everything else seems mediocre in comparison....but I did my first bath on my own with her today which was a little daunting and required lots of organisation. We now also finally have broadband at home, despite the fact that I spend every waking hour at the hospital. Thank you everyone for all your text/email messages - my apologies if I haven't replied to all of them. Suffice it to say that it is now 11pm and I have just had my dinner and then will be washing some baby-grows!

Hopefully tomorrow there will be more clarity around which of the discharge dates we are actually going for!

11th October

The battle of the female wills within the Chaffin family begins....

After a minor set-back on Friday evening (Briony had exhausted herself feeding) we are now moving onto the final issue that needs sorting before we go home....feeding. Briony has been pretty good at bottle feeding but pretty rubbish at breast feeding. Basically because it is easier for her to bottle feed and during the day if she doesn't feed effectively from me we still top her up using the tube, which is obviously even easier for her. So today we started to demand breast feed her during the day with no top-ups. This means that I literally sit by her cot and wait for her to wait up and want a feed. Well, that's the theory. Eventually she should be hungry and desperate enough to take a feed from me. But Briony being Briony things are not that easy. Her first feed was due at 11am this morning, and at the time of writing (4.30pm) she has shown very little interest - I reckon she has probably had about 1/10th of what she should have had. Theory goes that she should be screaming and happy to eat anything in sight, but what is actually happening is that she is fast asleep, perfectly happy and even saturating at 100% (virtually unheard of). Apparently this is what the nurses call "The treatment" and it usually breaks either the babies or the parents, so place your bets now!

Other than that everything else is moving slowly along. Pretty rubbish weight gain of 15g between Wednesday and Sunday. Another bath last night which was great fun and Briony does seem to really enjoy them which is great given we are already starting to think about family scuba diving holidays.

The visit to the family with teh baby on oxygen was good, but they seem to have not really left the house for the last 4 months which will drive me crazy.

Still no home broadband...

7th October

Once more back in the friendly Aylesbury library in between feeds....we now have a phone line at home, but no broadband until next week and in any case I am at the hospital between 10am and 9pm each day and when I do get home just want to collapse into bed!

So where are we now? Well Briony has recovered from her infection, but it seems to have done more damage to her lungs as she now needs more oxygen than she did before the infection, which again just time will heal. She is still in the high dependency end of the ward following her 48 hour pass-out. Feeding is starting to get a bit easier and she is now also taking a bottle when I am not at the hospital. We have moved on to 4 hourly feeds both day and night now.

Weight gain has been a bit of an issue in the last couple of weeks, but unbelievably because she was putting on too much weight! She is now 2.065kg (4lbs and 9 ounces)I've attached a couple of more recent photos, but these are a couple of weeks old as I don't have the most recent ones with me. She has also had to have a 4th blood transfusion.

Stephen and I noticed that her belly button looked a little odd the other day. The doctors have checked it out and they think she has an umbilical hernia, which is apparently very common in premature babies. They don't do anything with it until she is at least 2 years old as they quite often self-resolve.

A bit milestone was that Stephen and I gave Briony her first bath last night and lets face it at 11 weeks old she really needed it! Again another milestone as we haven't been allowed to bath her up until now as she hasn't been well enough.

We are starting to think about plans for home now and at the weekend Stephen and I will be visiting another family who have a baby on oxygen. I have to admit it is a little daunting and obviously not what we had planned but we just can't wait to get her home. It's going to be very restrictive as we have a condenser unit and the tubes are only 15m long. I think we get a couple of little portable cylinders but have been warned that we shouldn't be venturing far. We also need to have training on the oxygen and the dos and don'ts in the next couple of weeks. They always said that she would be discharged around her due date, which is the 27th October. Funny to think that she will have been around almost 4 months by then. It is now just a case of getting her to consistently put on the right amount of weight and get her feeds fully established as she is still having to have some of them down the tube (which she can't go home with). Her oxygen requirements also need to come down a little as she is right at the top end of the limit that she can come home on, which doesn't leave any room for contingency which the doctors aren't happy with.

Visitors are always welcome. We have been asked to remind everyone that Briony will remain very susceptible to infection until she is at least 2 years old and will likely end up back in hospital if she has an infection as she is still a delicate little thing. If you do have the slightest cold or sore throat and were planning to visit then in the nicest possible way, please don't! We are so near now that we don't want any set backs.....

30th September

Well this time I'm in the Library as still no internet or phone line at home and there won't be one for the next couple of weeks or so.

The rollercoaster of SCBU continues....we have had good days and bad days. Today is unfortunately a bad day.

Briony had moved from the high dependency nursery to the "getting ready to go home nursery" a couple of days ago which had really excited both Stephen and I as after 10 long weeks it looked like we might be getting nearer to getting her home. She had also come off the vapotherm (actually the machine broke!) and was on low-flow nasal oxygen which would be what she would come home on. She had also put on a huge amount of weight (for her in any case) and at the last weigh in yesterday was 1.825kg (a touch over 4lbs in old money).

However, last night both Stephen and I thought that things weren't quite right with her - she just wasn't as settled as she normally was. We were right - this morning she has unfortunately had to be moved back to the high dependency unit as she has another infection. This has caused her oxygen requirement to more than double overnight and she is desaturating when I try to feed her so we are having to tube feed her once more, which is a shame as we were just starting to get her established on the breast feeding.

There have been loads of vistors (too many to list!) since the last blog - as usual Briony is very popular!

It really is a marathon as just as we could see light at the end of the tunnel we feel it has been snatched away from us again. Almost 3 months old and still no nearer to coming home.

14th September

I'm sitting in Starbucks writing this, so this will be the last post until we have managed to get the broadband sorted at home which is looking like it could take a number of weeks (BT don't know the meaning of customer services). There is also no phone line or mobile phone reception in the new house, so it will be a few weeks before we are contactable easily, except for when Stephen is at work, when he can be contacted on his mobile.

Briony is slowly getting there, although we still have a long way to go. They are now slowly weaning her off the oxygen support, although there is a strong likelihood that she will need to go home on oxygen as she isn't tolerating it particularly well. However, she is looking cuter by the day and has started crying quite a bit, which I guess is a good sign!

She is also due another blood transfusion today, which they are hoping may help with the oxygen requirements. They have tried to lay off the transfusion but she has sunk to a level where they are not happy to leave her without it for any longer. Weight is up slightly to 1.5kg.

Visitors are now more than welcome again now Mum's exams are over, although contact Stephen to arrange the bookings! I only have phone reception whilst over at the hospital when it should be turned off in any case.....

7-8th September

Briony has had a good couple of days!

We're glad that we said no to the diuretics. Something has changed in Miss Chaffin over the last couple of days as her oxygen requirements have dropped a little (finally). She now needs between 28 and 32%, which is finally starting to move in the right direction. We're still not where we need to be, but at least it is now in the right direction!

We got a letter through from the GP yesterday saying that they had booked her in for her primary immunisations next week. It was a bit sad as I had to ring and say that she is still in hospital. It just reminded me that she is now 2 months old and we aren't able to do any of the things that "normal" new Mums and Dads do.

They haven't started the fortifier either, as when they weighed Briony yesterday she had put on 90g since Sunday - she now weighs in at 1480g (3lbs 4oz), so again we are getting to where we need to be.

Mummy and Daddy are almost ready for the move tomorrow. There may be a lack of posts for a few days for a couple of reasons; firstly we can't get the new broadband set up until we are actually in the new house, and secondly there is a fault on both the phone and broadband at home - we have not been able to use either since Monday, so apologies if anyone is trying to get hold of us - at the moment you can't!

4th-6th September

A busy few days for the Chaffins with a couple more still to come!

Mummy had her MBA exams on Sunday (not really sure how they went), so didn't visit on Saturday and has been visiting in the evenings instead as her course also runs all of this week. Dad has been keeping up the daily vigil as well as packing up the last few bits in the house ready for the move on Friday.

First the good news - Briony has put on some more weight and is now 1390g with another weigh-in on Wednesday. Her oxygen requirement is also slightly better at around 34-35%.

On the other side the weight gain is not really at a high enough level, so tomorrow Briony will be started on fortifier again to see if that can help as she is not where she should be on the premature growth charts (10th percentile for those of you who understand these things). It is also likely that she will have to have her third blood transfusion tomorrow as the haemogloblin level has dropped still further and is now at a point where they think it might be compromising her breathing a little. The final thing that they are becoming more concerned about are her lungs. At thsi point they should be able to start weaning her off, but every time they try she is unable to cope. They want to start some more medicines (diuretics) to see if these will help, but the evidence is a little patchy that they will actually do anything and they tend to cause problems with weight gain which has always been an issue for Briony so we have asked them to hold off for a couple of days. Of course if things change then we will reconsider. We just don't want to start something that doesn't really have any very clear evidence to say that it works and then upset the weight gain.

3rd September

A better day today.....

Briony seems to have improved a little - we're not sure if it is the increased flow from the breathing support or the medicines they have re-started to help with her suspected reflux. Stephen and I both think it is probably the reflux medicines as it took a little while for her to improve rather than immediately (which it would have been if it had been the breathing support).

The doctors had a long discussion with me about whether to start her on longer term diuretics, as there is some evidence to say that it may help wean premature babies of their breathing support sooner than not using it. However, there is also evidence to say that it has no benefit at all! As with all medicines, there are side effects to the drug that they would use which generally give them problems with their weight gain and issues longer term with their kidneys (which will resolve with time). Having considered it and given it took us so long to get the weight gain sorted we have decided that we don't want to consider it as an option just yet. If she gets worse we might consider it. It would mean her being on the drugs for a couple of months and its not really a road we want to go down unless we really have to.

Oxygen requirement is now between 32% and 36%, which is better than the 38-40% we were using earlier on in the week.

Briony is now in the next size up baby-grow. It fits her pretty well, with the exception of the arms which are too big for her!

Daddy had a cuddle yesterday evening and got home to find that Briony had dribbled all down his chest! He didn't mind though and said it was actually quite sweet.

Mum probably isn't going to go over today as her exams are tomorrow, but Dad will be visiting a little later.

2nd September

A mediocre day today

Briony's breathing support has been increased again. She is now on 6.5 litres of vapotherm, rather than 6 litres and is up at 40% oxygen. They have also restarted her medicines for reflux as she is worse after each of her feeds. She seems to be growing into her lung disease rather than out of it.

Nanny and Grandad Chaffin visited today. Briony was wide awake with arms and legs everywhere for Nanny and was showing off to Grandad by moving her head around from where it had been put. At one point she turned her head round completely the other way, but had a rather abrupt ending when her muscles got tired and she face planted onto her bed!

Her hands and feet feel cold again, so my money is on another transfusion in the next few days....

1st September

Some days it's hard to stay positive and today has been one of those days.

Having said she was improving, I seem to have fated it as she didn't have a very good night last night with her oxygen requirement needing to be increased again. She's now on 36-40%. Part of it is because we now need to start putting her on her back rather than on her front all the time as she needs to get used to being on her back. She hates it though! The nurses have noticed that she is getting a bit of an elongated head which is because she is always lying on one side of it.

The Consultant came to talk to me this morning and said that they are not really sure why her oxygen requirement has increased again. They just need to watch her and see what happens (not that they don't usually watch her in any case). From the X-rays that they have taken her lungs aren't in great shape from her being born so early and they are hoping that she is just going through one of her little dips. It's a bit depressing though as she might need to go back onto a ventilator again if things continue. It's also looking increasingly likely that she will need some kind of breathing support in the longer term as apparently it takes up to 2 years to grow out of the chronic lung disease of prematurity. They did give her a diuretic last night to see if there was any fluid on her lungs that they needed to clear, but this doesn't seem to have made any difference.

There was another weigh in today. Perhaps unsurprisingly Briony remained exactly the same weight, but given that she peed 70mls (or around 5% of her bodyweight!) yesterday because of the diuretic it's not a huge issue at this point in time. She has definitely grown out of the smallest baby-grows so I will need to go and get her some more tomorrow, which is a bit of a milestone.

No cuddles today - given that she has deteriorated a little we have just left her to sleep today - she has barely opened an eye all day!

30-31st August

Briony's first Bank Holiday weekend!

Things continue to progress.....

Briony did have an infection, and will stay on the antibiotics for another couple of days to be on the safe side. They have really helped with her breathing as she now doesn't need as much oxygen. She does still require around 30-33%, but it's better than the 40% she was needing a few days ago.

Other than that, no real major developments to report. It's just a case of feeding her and waiting for her lungs to improve really! The bradycardias (where her heart rate drops too low) seem to have pretty much stopped now, so that is great as it is another step in the right direction. The next big step will be her moving from a temperature controlled incubator to a medical cot, where she will have to regulate her temperature on her own. Hopefully this will be in the next week or so, fingers crossed!

27th-29th August

A hectic few days for the Chaffins, hence the slight lack of posts.

Things in general are progressing in the right direction, but Miss Chaffin has been a bit of little monkey over the last few days! The staff at Stoke Mandeville have now been trained on Vapotherm, so she is back on that rather than the CPAP, which means that the Star Wars mask is no more! Having said that, she seems to be on a much higher oxygen concentration than when she was at the Radcliffe. She is on around 30% when she is on her front and around 40% when she is on her back. The nurses have started to put her on her back now - although she hates it she needs to start getting used to it as she will need to go on her back when she finally comes home.

Her breathing had become a bit laboured earlier on in the week, so we have been through the usual blood tests, cultures and starting antibiotics in case she has an infection. She is still on the antibiotics and the cultures aren't back yet. It is either that, or she is refluxing some of her feed. We will wait until the cultures come back and then if it is not an infection then some of the anti-reflux medications will be re-started. Feeds have now moved to 3 hourly, again to try and start getting her used to what will happen at home.

Weight is still moving in the right direction as this morning she weighed 1295g (2lbs and 13 oz) - we have noticed that she is also starting to get a little bit of a double chin which is really quite sweet!

The other big news is that because she is now really sucking at her dummy the nurses recommended to try her at the breast when they are giving her the feed down the tube, so that she starts to associate getting milk with being on me. It was very sweet as although she didn't actively feed from me, she did have a bit of a go and with time the nurses think she will get there. Pretty good really given that apparently babies don't develop the suckling reflex normally until 34 weeks and she will be 32 weeks on Monday.

25th-26th August

The big weigh in happened yesterday and Briony weighed 1205g or 2lbs 10 ounces in old money. Roll on 3lbs! We really feel like we are getting there now.

Briony had her eye test earlier in the week and is pretty much fine. There are a couple of minor issues, but apparently these will resolve with time.

The pressure on the CPAP has also been lowered - it means that instead of the machine feeding Briony air/oxygen without her having to work too hard for it she is now having to learn to do it on her own. She is doing pretty well at it, although it does mean that her oxygen requirement has increased. You can't have everything though!

The nurses are starting to take her off the CPAP completely for a few hours a day. She still needs oxygen, so this is given either via nasal prongs, or fed into her incubator for her to breathe all on her own.

Mummy and Daddy have been allowed cuddles with her just on the nasal prongs in the last couple of days, which is lovely as we can hear all the little gurgles and mutterings that she is making, rather than the constant hiss of the CPAP machine. She is getting more and more active, raising her head and looking around when she is out for cuddles.

She has been working quite hard with her respiration, which means she is breathing quite fast and seems to be dropping her oxygen saturation a little more often than normal. They think this could either be reflux or a possible infection. They were going to see how she went for the rest of the day and then start the usual round of screeing tests to rule an infection out.

We're working our way through Beatrix Potter which seems to calm Briony down. Or perhaps that is just the lack of sleep making me think that!

More photos tomorrow.

23-24th August

A relatively good couple of days.....

Yesterday Briony had a few desaturations, so they wanted to check her heart to make sure there was nothing sinister lurking, which thankfully there wasn't (it was checked today).

Daddy had a cuddle last night and Mummy had one today.

Briony's eyes have also now been checked and the opthalmologist says that there is a little bit of damage, but nothing that he wouldn't expect given how early she was born. He thinks that it will all resolve with time.

Briony has also been switched back to hourly feeds and tomorrow they will put this to 2 hourly feeds.

Another small milestone today - when I changed her nappy she was allowed off the CPAP for 3 minutes - she was pretty pale by the time she went back on, but she seemed to like not having the star wars headset attached to her!

She is starting to get a real character now and has worked out how to move the mask from her face. She also pushes your hand away when she has had enough!

Another weigh in tomorrow, so hopefully she will have put on a little more weight.

22nd August

OK, so Daddy won the bet! Briony weighed in at 1.145kg this morning.

Briony was having her blood transfusion as we left, which will hopefully help with her oxygen requirement as it was up around the low 30s today. Uncle Paul and Aunty Becky came to visit and both thought she looked a lot better than when they saw her last.

The nurses keep asking Stephen if he can visit during the day - I think we are the only couple of the unit with one working parent, let alone 2! The nurse was quite put out when Stephen said he could come in tomorrow evening, but not during the day.

21st August

Yesterday was pretty much the same again....

They are going to give her another transfusion, but need some blood from me first (?!), not really quite sure how that works. Oxygen requirements are still up and down, so they don't want her working too hard, so think another transfusion is for the best. Equally, apparently there is a small risk of them dampening down her own product of red blood cells if they give it, so it is a bit of a balancing act, but given that her breathing is becoming a little more laboured they feel it is for the best.

Stephen went over to visit yesterday afternoon and apparently she was properly crying for the first time, which upset him a bit as there was nothing really that he could do!

We have also achieved our aim with her name - Briony didn't feature in the top 40 names last year!

Tomorrow is the big weigh in - Stephen and I have bets on how much she will weigh, although I'm not sure what the stake is! For the record, I think 1096g and Stephen thinks 1104g.....We were looking back at the earlier photos of her yesterday and she has definitely put on weight on her arms and legs - it looks like she has now "grown into" her skin, rather than it being all wrinkly!

20th August

Nothing much new to report today.

Breathing is still pretty much as before, although apparently Briony needed more support overnight and was up to 39% oxygen a couple of times. This had led them to question whether she might need a further transfusion, so the doctors came and took blood from her this afternoon while I was there to see if this is the case. It seems strange that they keep taking so much blood to find out if she has enough of the stuff or not! I secretly suspect that she may need another transfusion - her hands were a little cold again today and looked quite white at her finger tips.

Briony was very awake and active during her nappy changes today - at one point she had hold of my hands so tightly that I didn't want to take them away from her as I thought I would hurt her!

Granny Stephanie and Grandad Tony visited today. They think that she looks much better than when they last visited a couple of weeks ago.

Mummy will be at the hospital bright and early tomorrow morning for the ward round as the doctors want to discuss the blood transfusion options with her. No rest for the wicked!

18th-19th August

A good couple of days for Miss Chaffin.

She seems to have settled in pretty well to her new home and is coping quite well with the change. She even seems to have settled into the CPAP a little more now, although is still trying to pull it off at regular intervals, which is quite an achievement if you look at the pictures!

They don't weigh her as often at Stoke Mandeville as they do at Oxford - only twice a week. However, the weight that they did yesterday showed that she had put on 40g and is now 1045 grams, so another step in the right direction. Today they have switched her from 50% formula and 50% breast milk to full breast milk as the policy is different at Stoke from Oxford! The volume gone up very slightly because of her increased weight to 7.8mls/hour, which she seems to be tolerating well.

Oxygen requirement continues to be between 22% and 29%, although seems to be getting slightly better. Her respiratory rate seems to have pretty much calmed down too, so it looks like things are going in the right direction. The flow rate on the CPAP is still pretty high at 8 litres, but this will hopefully start to come down in the near future when they feel that she can tolerate it.

Briony had her first introduction to the tales of Beatrix Potter today and seemed to quite like it!

Stoke Mandeville don't provide nappies, so Mum spent a very fraught 2 hours yesterday scouring the shops of High Wycombe and Aylesbury in search of premature nappies - eventually after trying Mothercare ("We usually have loads of them but seem to have had a run on them today), Morrisons, Boots and Tescos, Sainsburys finally came to the rescue......

Briony is allowed small toys in her incubator now, so has one from her Daddy (pink hippo) and one from her Mummy (teddy blanket). Currently the pink hippo seems to be flavour of the month - when I arrived this morning she was holding on to him!

17th August

A strange day today! I called early morning as usual to see how Briony was and everything was fine - same as usual really.

However, when I turned up at the hospital at about 2pm everything had changed! Apparently they had been trying to get hold of me (I'd chosen to unusually leave my phone at home), so had spoken to Stephen instead, but they wanted to transfer her to Stoke Mandeville in the next 30 minutes!

They had switched her from the vapotherm to something called CPAP, which is a bit more invasive and looks like she is a character in Star Wars - I will take some pictures. Apparently Stoke Mandeville don't use Vapotherm, hence the switch.

It felt very weird leaving Oxford and knowing that in the next 30 minutes our little girl would be making her first trip in the big outside world and neither Stephen nor I would be there. Luckily I didn't see the ambulance leave or drive past on the motorway on the way back.

A big thank you to my Aunt (Eileen) and cousin (Katy) who had come to visit for the day and successfully managed to distract me - we saw her ambulance waiting for her as we were leaving the unit and they took me off for a cup of tea so I didn't have to see her loaded up and the ambulance leave.

16th August

A slightly better day for Miss Chaffin today.

The big news first - she is now over 1kg! Stephen and I thought it would never happen. We're both obviously really pleased that she is now putting on weight.

Her breathing support remains the same - 6 litres of vapotherm. She seemed slightly more settled today on it. Her resps are still over 100 at times, but less frequently than before. At times she was on about 24% of oxygen, increasing to around 28% when needed.

She seems to like sleeping with her legs out over the edge of her bed - it looks really uncomfortable, but she must like it as she keeps getting herself into this position. She also managed to completely turn her head from laying on one side to the other today, much to the nurses surprise! She managed to pull the vapotherm tubes out of her nose twice today too, so she must be feeling a little better. The dummy also seemed to be more in demand today.

As the blood cultures are not back, she remains on the anti-biotics and is still on the continuous feed. The eye test didn't happen today - apparently someone calculated the days incorrectly, so this will happen on Monday next week.

15th August

Briony didn't have a very good night on Friday/Saturday night.

She was struggling to breathe and her respiration rate was very high, so they have had to up her breathing support again. She is now on 6 litres of vapotherm and 24-30% oxygen. They are very concerned about an infection, so have taken some blood cultures which will take a couple of days before the results are known. In the meantime they have started her on IV anti-biotics in case there is an infection.

Mummy and Daddy had quite a long chat with the doctors. The medical staff feel that what we are seeing is premature lung disease and is expected. They said that they felt that Briony had been doing a little too well given the circumstances under which she was born and that now she is pretty much doing what they would expect. Her lungs are very immature and should have had another 3 months to develop and are pretty much the last thing to develop in babies. They think that the drugs they gave both me and her at birth and also the hormones in her body from the premature birth may have been masking the true picture up until now. They have done a chest xray which shows that she has very under-developed lungs. This will be something that they hope she will eventually grow out of, but at the moment, nothing is certain.

On the positive side, Briony did manage to put on some weight and is 968g, so the switch to 1/4 formula and 3/4 breast milk does seem to be making a difference. She has however been having more problems with reflux despite the medicines to try and control it, so they have switched her back to continuous feeds, rather than 2 hourly. The volume has increased very slightly to 7.5mls/hour.

14th August

An early post today, as Mummy and Daddy are off to Stratford Upon Avon this evening to meet up with some of Mummy's university friends, so we won't be back online until tomorrow evening.

The main function of babies is to grow and put on weight. Briony isn't. She lost another 40g yesterday, which means she has lost just over 5% of her bodyweight in the last 2 days. She now weighs 920g, just 10g above her birth weight of 910g three and a half weeks ago. Mummy is going to ask to speak to the doctors about it today as Briony seems to be fighting a loosing battle and Mummy and Daddy are quite concerned about it as Briony will not be let home until she is at least 2.5kg which seems a very long way off at the moment. At this rate it will be 2011 before she is home and Mummy's maternity leave will be almost over, which isn't great as she won't have had hardly any time at home with Briony. Once more, robbed of the experiences of a normal pregnancy/early months with a baby.

Briony's infection tests have come back all clear, which is good news. However, the less positive news is that her haemoglobin level came back at 6 (it should be around 10-11), so Briony had to have an blood transfusion overnight. This meant she had to have 2 IV lines inserted (one for the transfusion and one for some fluids whilst she was having the transfusion) which isn't great as they can be an infection risk. The doctors want to leave them in for 24-48 hours in case they need to give her anything else.

Her breathing remains as yesterday.

13th August

Unfortunately not a great day today...

Briony has lost 10g so is back down at 960g. I overhead the Consultant ward round this morning where her weight gain was described as "rubbish". Very medical term clearly! This will be the last day that they will leave her on 1/4 formula. If there is no weight gain tomorrow she will be on 1/2 formula, 1/2 fortified breast milk.

To help Briony conserve energy and grow they have whacked up her breathing support. She has been increased from 2.5 litres to 3.5 litres and her oxygen has gone from 25% to 30%.

She has been breathing very fast (at over 100 respirations a minute - it should be around 20-60) and the doctors think she may also have picked up an infection. To be honest, I wouldn't be surprised as nearly every other baby in there seems to have an infection at the moment. They plan to do an X-ray of her chest to have a look and also some blood tests and cultures to try and work out what is going on with her. It looks like she will need to have an IV line put back in to give her some antibiotics.

She also looks quite pale, so they are checking her haemoglobin, which has been borderline for the last couple of days. If it low, she will need a blood transfusion. She did look a little pale to me and her hands were also quite a bit colder than they have been previously.

11-12th August

A steady couple of days.

Briony is now on 2.5 litres of vapotherm, but pretty much the same amount of oxygen. Her weight is now 970g (she's been up and down in the last couple of days), so the next big goal is 1kg! The consultant came and spoke to me today and although I'm really not happy about it has put Briony on 1/4 formula milk and 3/4 my milk. Apparently it's very difficult to get them back on breast milk once they have been on formula and I really want to breast feed her so am not that happy about it.

Mummy and Daddy have both had a cuddle in the last couple of days (with Briony, not each other!) which has been lovely. Daddy is off to Ireland tomorrow so will see Briony again on Saturday, but Mum will be back over tomorrow.....

Feeds are now every 2 hours rather than every hour.

10th August

10g weight loss today. Today is the last day they will try her on full fortifier before trying something else as they are now getting worried about her lack of weight gain. Apparently there is some fat boy formula that they can try, but that might mean that she won't take breast milk if she gets too used to the formula. So glad that I am expressing every 4 hours!

Breathing is much the same as before. They reckon she could do with a little less support, but don't want to put it down as she needs to conserve all her energy for growing rather than breathing. She is back on a minimal handling regime, which means no cuddles and virtually no touching except when she needs a nappy to change to give her the best chance possible of putting on weight.

Mum is pretty much shattered after 3 weeks of this, so there might not be a daily update from now on, but rest assured if anything significant happens I will post it! MBA exams in just over 3 weeks time and starting to panic, so please give me some time to study!

9th August

BRIONY HAS FINALLY GONE OVER HER BIRTH WEIGHT - HURRAH!!!!! She now weighs 940 grams, so this is a big psychological barrier that she has finally overcome.

Mummy was allowed cuddles today, during which Briony got herself into the strangest positions.....it really can't have been comfortable.

Grandma Julie payed her final visit today before travelling back to Suffolk tomorrow.

Other than that, not a lot to report today. Breathing is pretty much as it has been although she is getting better at sorting herself out rather than the nurses having to up her oxygen.

There's certainly nothing wrong with her bowels - Briony has had to progress to a larger size nappy, for all the wrong reasons!

8th August

For the first time today, Mummy didn't visit as she had to revise for her exams in a few weeks. Daddy said that she was settled when he visited and woke up for a short while.

Briony managed to put back on the 20g she lost yesterday, so is back to 900g once again. We still can't seem to quite manage to get back over the birth weight of 910g, which would be a real psychological milestone!

Breathing is much the same - on a maintainence of 24% oxygen, but requiring increases every so often when she desaturates.

Milk is now full fortifier (why I am still expressing in the middle of the night?), and has gone up from 6.5mls to 7mls/hour. Something is obviously having an effect, as when Stephen rung up earlier to ask how Briony was the nurses commented that she was fine and pooing everywhere - charming!

Briony is almost sucking at her dummy and keeps almost putting her thumb in her mouth which is very cute - I reckon in a week or so either the dummy or the thumb will be in full use!

7th August

20g weight loss today, so Briony is now on full fortifier with a warning to put weight on or they will have to try something else. Volume of feed has increased slightly from 6mls to 6.5mls every hour.

Her breathing is not as good today as it has been the last couple of days with Briony remaining settled on 26% oxygen, but sometimes needing up to 30% oxygen at times.

Mummy and Daddy didn't spend too much time with her today as due to the poor weight gain (or should that be weight loss?) she is now on a minimal handling regime which means that she can only be touched during her cares (i.e. nappy change) and isn't allowed out of the incubator until she starts to show a more sustained weight gain that they are happy with. No visitors today other than Mummy and Daddy.

Daddy drove to Devon and back this morning to buy a car.....with the result that Briony now has a choice of cars between a BMW and a Land Rover Defender!

For the first time since she was born Mummy won't be visiting tomorrow as she desperately needs to do some revision for her exams in a few weeks time, so tomorrow's blog will be down to Daddy....

6th August

Another good day today....

Briony is now wearing a baby-grow and even if it is her mummy saying it she does look very cute! Tomorrow we will take the camera to get some pictures of her in her new clothes.

No weight gain today but no loss either, so hopefully things are still moving in the right direction on that one. Certainly Briony was the most settled that she has been in her 15 days on this planet today and spent most of the day asleep. She may have opened one eye at one point, but that was about it. No cuddles today as she was so happy and contented that we didn't want to disturb her any more than we had to.

Even her breathing seems to have improved slightly. She is still on the same support as before, but when her oxygen saturation drops she is now able to right herself without the nurses having to turn the oxygen up any higher (she is currently on around 24%).

Mummy learned how to turn her over and Briony didn't cry when she did it, although she made a bit of a mess of it!

When Daddy visited this evening apparently she was trying to do press-ups on her head!

Briony has had a busy day with visitors - Granny Julie visited this morning and Granny Stephanie and Granddad Tony this afternoon. Hand squeezes and strokes were had by all!

5th August

A lovely day today.....

Briony had put on 60 grams which means she is almost, but not quite back at her birth rate. She also seemed more settled today and is managing to breathe a little easier. She is still on the breathing support and occasionally drops her oxygen saturation, but is getting better at righting herself, rather than the nursing staff having to intervene.

The humidity and temperature control on her incubator have slowly been weaned down and hopefully by tomorrow will be off completely.

As she is progressing well, Mummy was allowed a longer cuddle today and Briony was out of the incubator for about 25 minutes....until she told everyone that she had had enough by dropping her heart rate to 32 beats a minute (should be between 150 and 180)....

Granny Chignell came to visit today and says that she looks much better than when she saw her about 11 days ago.

A positive day for everyone. Hopefully tomorrow will bring more of the same! On a slightly different note, Briony's Mum is really proud of herself as she has managed to fit into her pre-maternity jeans today - hurrah!

4th August

No weight gain again today - a 10g loss. Briony continues on half fortifier and half my milk, but it doesn't really seem to be getting her anywhere.

She is also continuing to drop her oxygen saturations quite significantly after each feed which scares us as it sets all of her alarms off. If it continues, tomorrow they will try something else.

Other than that she has been quite settled and has been asleep for most of the day, including when Mum and Dad visited. No cuddles until she starts to put on weight, so we have asked her again very nicely to just keep sleeping so she can get stronger!

3rd August

A couple of changes today....

Briony's milk had to start being fortified- she put on 20g which brings her back to where she was yesterday. They want her to be gaining around 30g a day and as she is 2 weeks old tomorrow they really want her to be back at her birth weight of 910g and she is struggling to get back there.

Unfortunately she had started refluxing her feeds too. They were being given to her continuously through a syringe driver down a tube, but have now been switched to every hour so that they can give her some Gaviscon after each feed to try and help her keep them down.

Breathing support continues to be increased and decreased as Briony needs it. At times the oxygen had to be increased to help her and at one point was up at around 40% which is higher than it has been at any point before. When she is stabilised she seems to be on 3 litres of ventiform, at around 24% oxygen, which is again higher than on previous days, where she has managed on 21% oxygen.

Her sodium levels have also dropped, so she is being given some sodium chloride every 4 hours which may not be helping with the reflux situation.

We hope that the fortified milk will help with the weight gain, as currently most of her problems seem to be linked to the fact that she is struggling to gain weight....

2nd August

Briony didn't listen to either her Mum or her Dad and has lost weight again - 20g. In an effort to bulk her up her fluid intake has been increased to 160ml/kg (from 150). It seems to be a real struggle to get her to gain weight, but apparently this is what happens with very premature babies as all their effort goes on trying to stay warm and breathing, which they shouldn't be trying to do at this point.

Briony is now the ripe old gestational age of 28 weeks....

She continues to need breathing support and it has had to be increased further to 3.0l/hour, sometimes on air and sometimes with a bit of extra oxygen, especially when she is being handled and having her nappy changed. For this reason we have been asked to handle her as little as possible as she clearly gets upset by it. She's also not allowed out of the incubator until Thursday at the earliest, maybe later depending on how she is.

Briony now has her first dummy, which is something I was dead against until we found ourselves in this position...it's funny how things can change. The dummy will help her develop the suckling reflex whilst they are feeding her, so that she associates suckling with a full tummy. This doesn't develop until the baby is over 30 weeks old, so she needs some extra help.

Towards the end of the week we have been asked to bring some clothes in for her, so she should be able to wear more than just a nappy soon!

1st August

Pretty much the same as yesterday today.....

30g weight gain, which is positive. Liver levels came back right on the borderline of normal so Briony may have to go back on to the phototherapy - they will repeat her levels probably tomorrow and see what these say.

She's still having episodes where she drops the level of oxygen in ber blood quite significantly and has to have support from extra oxygen. They have also upped her breathing support to 2.5 litres per hour rather than 2 litres.

Briony was in a little baby-gro today for the first time - even the premature baby ones are too big for her! We have also started her with a special dummy that will help her develop the suckling reflex as at the moment she is too premature to have developed it. Milk has now been increased to 6ml/hour and is being given to her via a continuous drip straight into her tummy.

Daddy was allowed his second cuddle today and Briony met Duncan - she's very popular and now has a full visiting schedule for next week!

31st July

Another mixed day today.....

No weight gain, but equally no loss either. The doctors are probably going to put her on fortified milk from tomorrow onwards to help her try and put some weight on.

Briony looked a little yellow to Mum and Dad today, so we wouldn't be surprised to find her back on the phototherapy tomorrow. Apparently they will check her liver levels to see if this is needed a little later on this evening.

The last of her IV lines has been removed, so this means that she is now at less risk of an infection, which is great.

Mummy was allowed a very quick cuddle today, but not for too long as at some points Briony is still struggling to breathe.

Mummy and Daddy really wonder if it is the change of room that has upset Briony a little. She seems best when she is just left to sleep and not disturbed, so we have limited the amount of times her incubator is opened to an absolute minimum. We'd love to interact with her a little more, but all in good time!

30th July

A mixed day for young Miss Chaffin today. On the positive side, she finally managed to put on a little bit of weight and increased by 60 grams - to give her a weight of 830 grams. The intravenous feed has stopped completely and she is now solely on breast milk at the full quantity for her weight. This means that hopefully tomorrow the last of her IV lines can come out, which cuts down her risk of getting an infection. She also moved from intensive care to high dependency this morning.

However, her breathing has been quite unsettled today and at times the nurses have had to up her respiratory support as she is not able to get enough oxygen into her blood to support herself through breathing alone. No one seems quite sure why this is the case and we all hope that it is not a sign that there is something else happening. All a bit scary as she keeps setting her alarms off. Stephen and I wonder if she is a little unsettled in her new environment and hope that overnight she may settle a little and return back to her good progress.

No cuddles today as she wasn't really well enough. She met Becky (Bagnall) for the first time.

29th July - Daddy's first cuddle

Briony had another good day today. Although she didn't gain weight, she didn't loose it either and weighs in at a steady 770 grams. Hopefully tomorrow she may start putting weight on finally. They have increased her milk up to 4.5mls/hour and decreased the intravenous feed. By tomorrow morning, all being well, they are hoping to have her exclusively on milk which would be great as it means she can have all of her horrible IV lines out, which she keeps trying to pull out in any case!

She's still on the breathing support - she'll stay on this for a while as it seems to be really helping her currently and they don't want her using too much energy just trying to breathe.

Big news of the day is that Stephen had his first cuddle. Briony loved it and was very settled with him and kept opening her eyes to look at him. Photos coming shortly (if they're not there already). Mum and Dad also gave her most of her milk today.

Briony also met Jude today - thanks for being my dedicated taxi for the day Jude!

First cuddle with Mummy

Briony had her first cuddle with Mummy on 27th July. Everyone cried, except Briony!

Mummy is now out of hospital, although spends most of the day back over with Briony in any case......

Week 1

Briony Elizabeth Chaffin was born on the 21st July 2010 at Oxford John Radcliffe hospital at 12.00 midday after a difficult pregnancy. She was clearly very eager to get into this world and meet everyone, as she made her entrance at just 26 weeks gestation weighing just 910g. Soon after her birth she was whisked off to the special care baby unit (SCBU).

Week 1 was a week of ups and downs for both Briony and her proud new Mum and Dad. Initially on a respirator, Briony surprised everyone and managed to cope with breathing on her own the first time they tried weaning her off. She moved onto Vapotherm, which is where 2 prongs feeding her air are put up her nose. This was stopped on day 3, but started again on day 6 as she seemed to be struggling a little.

Weight gain has been a real issue this week........although not exactly a heavy weight to start with Briony has lost weight throughout the week and ends the week weighing 774g. She's being fed intravenously and is also having increasing amounts of milk fed directly into her tummy through a tube in her mouth. By the end of the week she was up to an impressive 2.5mls/hour!

Mum and Dad have spent their days travelling to and from the hospital and Dad has also had to return to work. Sleep is at a complete premium as Mum is having to express every 3 hours including during the night. The events which bought Briony into the world early have also caught up with Mum and Dad. We are allowed to change her nappy and also to give her milk hourly if we are there.

Already Briony has had loads of visitors and is busy meeting the family; this week she met both sets of proud grandparents, Uncle Paul, Aunty Becky and Aunty Carlie. Not bad for just 1 week old and already so popular!

We can already she her character coming through - she is a real wriggle bum and the nurses struggle to keep her where she is put! She has also pulled a couple of her tubes out so the nurses have had to use supper strength plasters to stick them in place.

The week ended on a real high. On about day 3 she managed to open one eye, and then on day 6 she suddenly open both eyes and started peering to she who was outside her incubator. At the end of the first week, as she was relatively stable, Mum was allowed a cuddle outside of the incubator for the first time. It was a really special moment and Aunty Carlie was the official photographer. Lots of tears all round. She's limited to one cuddle a day at the moment (depending on her condition), so Dad is due the next one!

Briony's Blogger site - introduction

Briony is clearly a very well loved little young lady - not bad for just one week old today!

We have decided to create this blog so that we can update everyone who is concerned about her all at the same time, and have a record of her early life for the future.

We will upload photos as and when we are able to take them, so that you can all see her progress whenever you want to.

We hope that this helps you feel part of our little daughter's early days.....