Day 32-The Webbed Toe!

The good news from today is that the routine appears to be working well and Olivia and Lisa are a lot more happy.  I'm missing them both terribly but it wont be long now before we can say goodbye to St Michaels.

I felt very guilty for leaving Lisa at hospital on her own but husbands/partners can only be there between 9am-9pm and I wouldn't have been able to do much without getting in the way.  I had meeting in London at lunchtime which I hope will lead to an important new client.  I made it back before the half term get away from London and had some lovely cuddles with Olivia, Lisa thinks she is getting to used to them and will not want to sleep in her own cot!

We are desperately hoping that we will be able to leave the hospital tomorrow but I think Sunday or Monday are more realistic as the doctors will need to see weight gain before we can go.  Olivia's weight has been static for the last few days so fingers crossed she will have a heavy day tomorrow if we can wrangle a weigh in as they only happen every other day!

Jess had a was looking Olivia's toes to see if my half webbed toe had been passed down a generation and it looks like it might have been!  My half web is on my right foot like my brothers but Olivia seems to have a less pronounced  web on her left foot!  See what you think.....

Night all and more news tomorrow.

James xx

Day 31- Ward 76

We or should I say Lisa has had a very tough 24 hours with trying to establish a feeding routine that will allow us to be discharged.

It was becoming increasingly clear that Olivia whilst she was suckling was not getting a full feed from Lisa as she was still falling asleep after 10-15 mins of feeding.  Lisa only managed 45 mins of sleep all night as Olivia was crying for food but then not taking enough milk, by the morning Olivia was getting more stressed and crying continuously.  The nurses decided that a tube feed was in order to rehydrate her and then a new plan would have to be devised.

The new plan was to let Olivia feed as much as possible direct form the breast but then let her have a bottle of breast milk to top up the feed.  This seemed to be working well and we were told that if this continued to work then we might be able to come home on Saturday!

James x

Day 30- A Quick Snip

Each day brings it's new challenges and today has been no different.

Olivia had a quick operation on her tied tongue to enable her to feed from Lisa more effectively, it went well and was done just after midday.  There was some slight confusion in the morning as Lisa had a call to say the op had been done before she had arrived at the hospital, she called me and told me with great delight that it had gone well and Olivia didn't even cry.  This changed....there was a mix up and Olivia hadn't had her op!  This was all rectified quickly and soon enough Olivia had full use of her tongue and after a couple of hour of trying finally got the knack of feeding from Lisa!

This was the best news that we could have hoped for and after Olivia was witnessed to be feeding well the consultant discharged them both from the NICU to a ward upstairs where Olivia can be monitored for a few days to make sure her weight doesn't fall dramatically and that she continues to feed well.

I visited them both in their new surroundings this evening with Jess, they both seemed to be in good spirits and settling in.  The ward is made up of four beds with mothers and their babies, it is not the most relaxing of places but at least it will give Lisa the chance to feed Olivia as she demands it and continue to bond.

I was sad to say goodbye to my little family tonight but I'm sure in a few days we will be able to leave St Michaels and get on doing the normal things that a new family does.  Measuring stomach acid, dirty nappies and syringing milk via a nasal tube are not things I wish to do any longer.

Night all.

James xx

The Cots for Tots Appeal

I mentioned last week that I had been in touch with the "Cots for Tots" appeal at St Michaels.  The aim is to raise £1 million to provide 4 life-saving cots and a new intensive care Suite  at the Neonatal Intensive Care Unit at St Michael’s Hospital Bristol and a Family Accommodation Suite close by –and they need your help.

http://www.cotsfortots.org.uk/

Until you have experienced a NICU first hand it is hard to comprehend the amount of equipment, surgeons, doctors, nurses and support staff that are needed to get these babies through their first few days weeks and months.  Each person does the most amazing job under a massive amount of pressure with anxious parents watching and scrutinizing their every move.  They are an amazing group of people and it is such a shame that due to lack of equipment they have to turn away babies that really need the care that St Michaels can offer.  The equipment is state of the art but the rooms and parents rooms are in dire need of modernising.

Anyway, watch the video and if you could find a few pounds to donate to the appeal it will in the end make such a difference to many babies and parents for many years to come...one day it might be your baby or somebody in your family that needs treatment.

 You can donate through this link:

 http://www.cotsfortots.org.uk/menu-page/get-involved/making-a-donation/

James xx

Day 29 - Light at the End of the Tunnel

4 weeks ago tonight we arrived at St Michaels on the start of a journey that we knew would be one of if not the hardest of our lives.  We've experienced unparalleled joy to devastating heartache and every emotion in-between, good days, bad days but always trying to look forward to the day when our beautiful little girl is well enough to come home.  The good news is that we are nearly there! There are still a few hurdles to get over...


Hurdle 1:
We found out today that Olivia has a slight 'tongue tie'...this is when the piece of skin that joins your tongue to the bottom of your mouth is closer to your lips than it should be.  It means that your tongue can't really get out passed your lips and if left makes breast feeding difficult and can lead to speech impediments.  SO Olivia is having this corrected tomorrow in a small operation that should only last a few minutes and should mean she can breast feed more easily within hours of the op.

Lisa is slightly relived as she was getting frustrated with the lack of progress with the breast feeding.  There still might be problems but at leas we can cross tongue tied of the list tomorrow.

Hurdle 2
Transitional care...Lisa called me this morning to tell me that an ambulance was booked for 2pm today to take Olivia to the Bath RUH.  I couldn't decide if this was good or not because although it would be great to get out of Bristol and be nearer to home I thought it could take longer to be discharged as the staff would have to get to know Olivia and us etc.  It was all academic within an hour because when the tongue tie was discovered it was decided that we would stay put for the op and then Lisa and Olivia would be moved upstairs to ward 76 in St Michaels for transitional care.

Lisa will stay in the ward with Olivia until she is ready to come home so I'll have a few lonely nights but it will all be worth it in the end.

Olivia has had a pretty unsettled day today and is getting used to a full stomach.  She has vomited a few times and once in her first ever bath!! She seemed happy when we left her so I hope she has a good night.

First Bath!..Not happy.

Thanks again for all your support and I hope to have good news tomorrow.

James x 

Day 27 & 28- The Home Straight, with the Occasional Bend

Lots has happened in the last two days and our routine has changed somewhat so my Blogging is becoming slightly more sporadic. I'll start with Sunday....

Olivia took a big step forward yesterday, we had everything crossed that she would reach her full feed level of 45mls and we were greeted to this news on arrival. Everything went well through the night and she kept having an extra 5mls added each 12 hours. This was such big news and we were thrilled to bits. There was a slight fly in the ointment because the 45mls we had been aiming for suddenly was moved to 57mls!!! When we originally asked what level a full feed would be it was calculated on her weight at that time. Since then she has put weight on so this figure has since changed. In the end it didn't make that much difference because by the end of the day she was on 57ml feeds.

My mum, Jess and Lisa's mum dropped by in the afternoon but Olivia was not waking up know mater how much gentle persuasion was applied. 

Olivia was doing amazingly but still reluctant to feed from the breast for any length of time. We decided that we would stay for 9pm feed and try to give her as much practice as possible on the breast.  We nipped out for a quick Wagamama's in Clifton and made it back for the 9pm feed.  The other great news was that they had stopped her liquid feed in to her leg! The bad news was that she was still not playing ball with feeding from Lisa.  We left happy but slightly frustrated feeling that something we'd not considered was holding us back.  Never mind there was always tomorrow.

Today brought new developments, excitement and challenges.  Lisa rang me to give me the morning update and there was some amazing news, all her tubes and wires had been removed bar her feeding tube in to her stomach.  The one we were most keen to see the back of was the 'long line' that was in her lower leg and could be the main cause of infection and was very tricky to manage when picking her up.  With that gone it meant that all her nutrition and hydration would be from milk and she would be able to have her first bath in the next day or two.

It was decided that instead of feeding every three hours Lisa would feed her on demand when Olivia was hungry with the caveat that if Olivia had gone more than 4 hours without a feed then she would have to be fed.  Olivia slept for 4 hours without waking up so then had to be fed but only managed a few sucks on the breast before falling asleep again.  The rest of her feed was down the tube again. 

The main challenge now is to get her feeding without the tube up her nose or the syringe, when she has mastered the boob we will be able to go home.  This is perhaps the most frustrating stage as to some degree it is in our power and not down to any drugs, surgeons or machines...just good old nature.  Lisa is feeling particular frustrated but we will get there soon and these last few days will pale in to insignificance in the long term.

We left the hospital just before 10pm and were both exhausted, Lisa is going to back in the hospital for 9am tomorrow for the first feed of the day.  Hopefully Olivia will be awake and ready to learn!

James xx

Day 26- Getting used to it

First of all sorry for not posting last night, I was shattered and fell asleep before I managed to turn the laptop on.

Yesterday (Saturday) was a very positive day, Olivia was awake for a good hour when we were there and was alert and settled. I fed her all by myself for the first time-albeit with a syringe and tube in to her stomach but it was a nice feeling,  She was on more milk again at 35ml and was going to be increased to 40ml at 9pm last night all being well....we'll find out this morning if that happened and if she did make 40ml at 9pm then at 9am today she would go to the magical 45ml!!!

If all the above goes to plan then Lisa will be allowed to give her a (try to) half a feed on the breast which will be amazing and a big step closer to coming home at long last.  We don't want to count any chickens just yet but I think I can here some clucking....Olivia's aspirates were really low yesterday considering the levels we had on Thursday/Friday and her system seems to be adapting to the larger volumes of milk.

Lisa's mum and my Dad visited yesterday and they were both lucky enough to see her awake and settled....she's not like that all the time!!  I've had to wait a week to see her that awake, she certainly knows when to turn it on.

Nanny Kath

A couple more pictures for you all then I'm off for a very quick mountain bike ride through the woods in the rain before we head in to hospital.

Snow drop hat! (slightly too big still)

Lisa and Olivia

 More updates later.

James xx