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!