Day 25 - Milk, Milk and More Milk

Well, what a week! Lots of positives, increased feeds, dirty nappies and weight gain..... her aspirates have gone up and down but you can't have everything.

The nurse did a great job with Olivia last night, the aspirates stayed low and she managed to keep her at 25ml feeds. When the surgeons did their rounds they were keen to get Olivia back on the 12 hourly increases but the consultant decided that 5ml every 24 hours would be a safer bet to reduce the risk of vomiting and very high aspirates.  We were also happier with this decision as we want to her to make solid progress rather than chopping and changing feed amounts all the time.

The pattern of previous days repeated itself with more milk comes more aspirates, before the 3pm feed there was over 30ml of aspirates! 

Tomorrow (the 12th) is the date that we were given at the start of the pregnancy when our baby was due to be born, that seems like a different lifetime ago now.  Tuesday will bring Olivia's fourth week in St Michaels and we are starting feel it, adrenaline can only keep you going for so long and we are both running on empty, very long days full of emotional ups and downs is an exhausting combination. I'm sure we are through the worst of it but you never know what is waiting for you around the corner....

No other exciting news today I'm afraid, lets hope for a good weekend and then we can start to think about a coming home party.

Night all,

J xx

Day 24- Too Much Too Soon?

Today we thought we'd made a big jump forward and started off on a really positive note but ended on a bit of a roller coaster.

I had a call from Lisa at lunchtime letting me know some great news, the surgeons were pleased with Olivia's progress so decided that she would move up to 25ml feeds and then the amount was to rise by 5ml every 12 hours!  This was a huge step forward and almost seemed to good to be true.  The other good news was that the visiting rules have changed slightly, we can now nominate up to 4 people to visit Olivia. We both really wanted Jess (Lisa's) sister to be able to visit so our lucky St Michaels 4 are: my mum, my dad, Lisa's mum and sister.

Jess wasted no time and came straight over this afternoon to meet Olivia, she was a bit shocked with the ward and all the tiny ill babies to start with (as all people are) but quickly fell in love with Olivia.

Auntie Jess

Olivia has been unsettled today and vomited most of one feed coupled with high aspirate levels so the decision was made to reduce her feed back to 20mls.  Not great but these things happen and Olivia's nurse for tonight was going to try and get her back to 25ml feeds and up them by 5ml if she felt Olivia was ready.  There were also more dirty nappies which is great news.  I really hope that she is going to be able to tolerate the larger amounts of milk over the next few days so we can think about coming home soon.

The ward is very full now and the parents and babies are almost on top of each other, it can't be helped but adds to the stress levels!

Fingers crossed for more milk tomorrow.


James xx

Day 23- On to 20 mls

The unit was very busy when I arrived tonight, our ward is now full after a few more arrivals in the last two days.  One tiny baby was transferred from the high dependency ward as they were full and he was the least ill if that makes sense.  He was very premature and was born in Torbay, the mother is not well following the birth and to make matters worse the parents were told from the scans that they were having a baby girl only to give birth to a boy!

All your positive thoughts are working well because the surgeons decided that Olivia was ready to be put on 20ml feeds every three hours!  Within an hour of this decision before she had the increased milk she was sick and had a reasonable level of aspirate so the nurse decided to keep her on 15mls until the next feed at midday.  The rest of the feeds have gone well so I expect she will stay at that level for another day or two until she is used to it.

Lisa got to the hospital just after midday as she had to register Olivia's birth in the middle of town, we now have a piece of paper that confirms her existence, called Olivia Grace Earp and we are her parents- all very exciting.  Just a shame that we couldn't leave the certificate in Bristol and bring Olivia home! Oh well.

My mum popped in this afternoon to have a cuddle and chat with Lisa.  Still no let up on the visiting rules but there may be some news on that front tomorrow.

We met Tim and Laura for a curry in Clifton after we left the hospital, it was great to catch up and see some friendly faces after the sombre hospital.

I'm shattered tonight so that's my lot for now. :-)

James xx

Day 22- Birthday Girl

Technically 21 days should have been her birthday but I've clearly got the Blog mixed up somewhere as she was born 3 weeks ago today.  Happy Birthday Olivia Grace and hopefully you'll be home before you reach your six week birthday....Lisa and I will be sleep deprived nervous wrecks and you'll be sick of reading about dirty nappies and other horrible things!

On to the days events...we left the hospital last night slightly concerned about the levels of aspirate that the nurses were extracting from Olivia's stomach, the high levels continued throughout the night steadily increasing from around 14mls per 3 hours to a peak of 36mls in the early hours.  Her feeds continued and whilst this was happening she managed to produce 4 dirty nappies! Normally if it's coming out of one end it wont appear at the other but she was clearly celebrating as it was her birthday. :-) Other good news is that she has put on a whole pound since birth, she is now a super feather weight at a mighty 6lbs 6oz.  Slightly less good news is that Olivia is the longest serving patient/inmate on her ward :-(

The surgeons kept her on 15mls of milk due to the high aspirates and were happy with everything else.  Lisa had a long chat with the nurses about wanting if at all possible to avoid having to go Bath hospital for transitional care and that is still the plan but Olivia is not suckling well enough on the breast yet and needs more training.  She is too keen on her dummy that she has to have to soothe her hunger pains but might be associating the dummy with relief and not food so when she is latched on to the breast she suckles for a few seconds and then falls asleep because she is relaxed again.  Oh well, more practice required.

I'm slightly worried that we are becoming to blase about minor ailments and procedures as we have been exposed to such extremes with Olivia and the other babies.  Most parents outside of a NICU would struggle to watch a doctor trying to find a suitable vein to insert a drip/cannula/line on a tiny baby with it screaming the place down.  We watched a doctor trying to insert a new line in one poor little baby a couple of days ago and after a reasonable amount of time abandoned hands and feet and settled on its head! The poor thing had the lines inserted and then a cup taped around it to stop them from getting knocked/pulled out...we didn't bat an eyelid.

Keep your positive thoughts coming and Olivia might make it up to 20mls tomorrow!

Thanks to Jonny and Rinny for a lovely spag bol on the way home, I've forgotten what it's like to make a meal from scratch!

Thank you and good night.

J x

Day 21-Milk and Aspirates Up!

**A quick note about the structure of the Blog....it was getting very long so I've had to archive the older posts, they are still there but you will need to click on the dates in the right hand side tool bar to access the older posts.***

Olivia will be 3 weeks old in the early hours of the morning and what an eventful life she's had already and technically she still shouldn't be with us until this Saturday when her birthday was originally calculated .

We've had some good news and bad news today, I'll start with the good.....

The surgeons were very happy with Olivia's progress over the weekend and as we predicted they decided to increase her feeds to 15mls every three hours. We were really pleased at this news and even more happy when the nurse told Lisa that if Olivia could get to 45mls and be breast feeding then all being well she wouldn't need to be transferred to Bath RUH to finish her care. This is a great target for Lisa and Olivia to aim for and for me to help support them towards. 

Now the bad.....

The increased milk levels have coupled with an increase in her aspirate/bile levels in her stomach.  Yesterday we had a 4mls over the whole day, today it was averaging 15mls before every feed, we have everything crossed that it is just because the milk level has gone up so the stomach is producing more fluid before it gets used to it.  Looking back at the charts from when the feeds were raised to 10mls a similar thing happened so let's hope that it will stabilise tomorrow otherwise we are staring down the barrel of stopped feeds at worse or reduced feeds at best.

Sleeping on Mummy

On a lighter note Lisa met up with her sister Jess and good friend Kathryn in Bristol for a break and lunch. Lisa is truly amazing spending all those hours in the hospital on her own every day and yet she still manages to give me a smile and kiss when I get there every evening.

Thanks to everyone for your continued support, cards, flowers, gifts and for reading the Blog! It's so nice to know that people care and take a genuine interest.  Everyone thinks (as we did) that everything will be fine during pregnancy and your baby will be healthy and back at home with you after a couple of days.  When that doesn't happen you need to keep your head up, keep believing that there is a light at the end of the tunnel and sometimes you'll just have to walk for a little bit longer to feel the warmth of the sun on your face.

J xxx

Day 20- A Bit Like Buses!

Well.....you wait for ages and nothing.....then two come along at once!  Yep, dirty nappies! Olivia opened her bowels twice  toady and is normally not something that parents would celebrate but this is big news at St Michaels for gastroschisis babies, it indicates that their digestive system is beginning to settle down and rumble in to life. 

All in all it has been a very good day, we've had more cuddles, fed her via tube and syringe, no vomiting of the green milkshake, her aspirate levels were almost non existent and we gave her wash.  We are quietly confident that when the surgeons make their rounds in the morning she will have her feeds increased up from 10mls. She has stuck on 10mls for the last 4 days and is getting more hungry with each passing hour.

This is not Lisa but the nurse feeding her hence the gloves and apron!

Over the last week 3 babies have been transferred back to their referring hospital freeing up some space in Olivia's ward, there was one new arrival today but still a few spaces remain for the lucky or unlucky babies and parents depending how you look at it!

I emailed the 'Cots for Tots' appeal on Friday, this is the most recent fundraising effort by the team at St Michaels, the aim is to raise £1,000,000 for 4 new lifesaving incubators and all the equipment that goes with them.  It is very sad that some babies who need to be treated at St Michaels NICU get turned away due to lack of beds and equipment, this can mean that even if you lived next door to the hospital your baby might have be treated in a hospital many miles away.

Olivia's Blog is getting a good daily readership of around 150-200 people so I asked if I could embed a web banner to the Cots for Tots website so people could donate if they wanted to do so. They are keen to meet us next week and would also like to link from their site to the Blog.

More news on this to follow. :-)

Asleep on Daddy :-)

We hope that this progress can continue in to the new week and that we inch closer to getting to take her home with us!

James x