Day 19 - Cuddles and Grandparents

We had a lovely day of cuddles with Olivia today and she was awake for nearly an hour so I manged to get some pictures of her with her eyes open for a change!

It was just before midday by the time we got to the hospital as the car desperately needed cleaning and I had to fix a new part to the tumble dryer that I broke last week.  All was well apart from a small mix up over her 9am feed because the nurse wasn't clear about what to do if her aspirate levels were over 10mls before her feed.  She decided that because she had pulled of 14mls she wouldn't feed her, the surgeons however are happy for her to be fed if this happens for the time being.

We managed to speak to the doctor who was pleased with her progress and said that he wasn't too concerned about the aspirates or the lack of dirty nappies.  He reiterated that every baby was different and not to worry for now. She will continue to have 10mls feeds every three hours over the weekend then it will be reviewed on Monday.

Both Olivia's grandparents and great gran visited today although great gran couldn't come in to the ward due to the flu restrictions.

 

 

We left hospital happy but tired and had a very nice roast dinner with Lisa's side of the family and were given two beautiful quilts for Olivia that Lisa's Gran had very kindly made especially for her.

Back in tomorrow for more cuddles.

James x

Day18- What Goes Down Seems to Come Up!

I'm so glad it's Friday night, this week seems to have gone on forever but has on the whole been positive.

Olivia has started to feed and quickly jumped from 5ml to 10ml feeds, today however was not all plain sailing.  The good news is that she is still having milk but her aspirate levels have increased dramatically in the last 34 hours from a few mls to nearly 70!  The doctors don't seem overly concerned as her stomach will produce more digestive juices now that it has milk to process but they do seem high.

She had kept all her feeds down until the 3pm feed when she threw a large portion of it back up all over her nice clean baby grow.  Baby sick is not nice at the best of times but because of the amount of stomach acid she is producing try and imagine the colour and consistency of what a kiwi fruit milkshake might look like and you wouldn't be a million miles away!

There was a small dirty nappy this morning but that was partly induced by a glycerin chip so we are still hoping that the milk will start to push everything through, there isn't any obvious signs of a blockage....the surgeons check every morning for bloated painful stomach, lots of aspirate (well she does have that) and no bowel movements. She still seems relaxed and is very placid most of the time....she did throw up on me this evening, it wasn't much but gave me a big shock!  Bless her she cried for a couple of minutes after as I guess the acid was burning her throat and nose.  I panicked slightly called the nurse to get some tissue, the heart rate alarm went off as Olivia's tiny heart hit well over 200 beats per minute and she was screaming hard.  It didn't last for long but Lisa was out of the room on the phone and I felt pretty useless!

Other news....still no visitors which gets more frustrating by the day for everyone but I do understand the risks and would hate for any of the babies to get flu from a visitor. 

Still no sign of the mother with the very ill twin.

I had dinner this eveing with James, Jonny and Paul at a local pub and Lisa had dinner at her sisters with Kate G and Emily, it was really good to relax for a couple of hours and not be at work or in the hospital.

Milk Surplus!!

Lisa is expressing an amazing amount of milk, enough for triplets it seems!  She has filled up her allocated space in the freezer on the ward, our freezer at home and has moved on to Jess and James'!  Jess sent me this picture yesterday....

!

To give you some sort of insight in to the amount we have.....Olivia started feeding a couple of days ago and now is up to 10mls every three hours.  Lisa has been expressing for nearly 3 weeks 6 times a day and is getting about 200ml from each expressing session ....well over 1 litre every day!!  The hospital have said they we'll be able to donate some of it to the national milk bank but they are waiting for a pick-up before they can take anymore in.  I'm going to be having it on my cereal at this rate ! ;-)

I get a whole day with my little girl tomorrow which is great so must get some sleep now.

Night

James zzzzz xxxx

Day 17- A Slight Wobble

After the great news of yesterday we were hoping to ride the wave well in to the weekend, all was looking good until 6pm this evening when we fell off the board (that is the end of the surfing analogies I promise).

Olivia had a very good start to the day with the surgeons deciding that as she had kept down every feed from yesterday her milk intake could double from 5ml to 10ml every three hours with Lisa trying to get Olivia to latch on to her breast after each feed.  The first 3 feeds went very well with her aspirates remaining low and clear, she didn't quite master the latching on  but... slowly, slowly, catchy monkey!

The 6pm feed threw a spanner in the works......Lisa was trying to draw off and measure the fluid in Olivia's stomach before the feed (any more than 10ml or if it was tinged with green or brown then the feed wouldn't happen).  Lisa pulled the syringe out once and nothing came up so asked the nurse if she should try again, the answer was yes so she tried again and still nothing.  At this point another nurse got involved and tried herself, Lisa said she pulled very forcefully and managed to get 3ml of fluid up that was a muddy brown colour.  The nurse got very animated and decided she must show the doctor straight away as it was not a good sign.  When she returned still brandishing the syringe she said that the feed would not happen and that was that, no real explanation and no sign of the doctor.  Lisa was understandably a little upset at the news and was still not very happy when I arrived just before 7pm.  One of the other nurses suggested that it could be some old blood from when the tube was inserted the day before but I wasn't convinced.

We left the hospital slightly deflated but were telling ourselves it was just a hiccup and the 9pm feed would pass without incident.  We agreed to call Olivia's nurse just after 9pm to find out how it went.  James and Jess had prepared a beautiful spag bol for us so we scoffed that down and then called the ward......  It was good news!! Olivia had been given the full 10mls, they didn't even use the tube up her nose but a tiny cup so she could experience her first real taste of milk.  We were delighted and will sleep well knowing that she is back on track.  All we need now is a dirty nappy to end the week and we'll be very content parents!

Quick piccy form this evening then I'm off to sleep, sorry they all seem to be of her with her eyes closed, she always seems to be asleep when I get to the hospital. :-)

James x

Day 16- A break through!

Today has been one of the best days over the last two weeks...Olivia got to have her first ever meal! I say meal but in reality it was 5ml of milk, this has been a real stumbling block for the last 5 days so we are both over the moon that it has happened.

Lisa arrived at St Michaels this morning and walked in to the ward, glanced up at the board with all the babies names on. It has some basic details like observation and feeding times, next to Olivia's name it still read "nil by mouth". Lisa's heart sank, she assumed that Olivia's aspirate levels had increased over night so the surgeons had decided to withhold milk for another day. At that point Olivia's nurse walked in, saw Lisa and gave her a big smile, Lisa asked what had happened with the feed, the nurse said that they had given her 5ml of Lisa's colostrum at 9am and Olivia had kept it down. The board still read NBM because it hadn't been updated....so all was well.

Lisa spoke with Olivia's doctor and found out they'd put Olivia on 5ml feeds every three hours with the caveat that they would measure the fluid in her stomach before each feed, if it exceeded 10ml she would not be able to have the milk. Luckily the levels have been low all day so she has had every scheduled feed so far, and the milk has stayed down.  She is a bit grumpy today as she has realised that food in her stomach reduces her pains but she still doesn't feel full.  The nurses suggested to Lisa to time her expressing with Olivia's feeds so when the milk has stopped Olivia is encouraged to latch on to Lisa's nipple to try to get her to associate Lisa's boobs with food! Both feeds when Lisa was there and this was tried Olivia was fast asleep and didn't stir so she'll try again tomorrow.

The next few days will be all about building on the successes of today and trying to increase the amount of milk by 5ml each day to gradually build up her stomachs tolerance levels until she can manage 45ml feeds with out throwing it back up. When she hits this magic number she'll be discharged from NICU and we'll either be allowed to go home or transferred to Bath Royal United Hospital (our nearest hospital) ,   This could be a very slow process, the baby boy next to Olivia who is nearly 7 weeks old with gastroschisis has hit a brick/milk wall at 35ml and is having his milk reduced to try and get his stomach to accept it.  We know there will be tough days to come but are hopeful that Olivia is on the homeward stretch now.

Mmmmm,Milk!

Her only other problem at the moment is the lack of a dirty nappy!  A couple of days of milk should help move things along, we don't want to reach the weekend without a dirty nappy or the milk will be replaced with dye and we will wait with baited breath for the results.

We finished the day with a lovely curry at the Moon's, thanks James and Emma! we'll try and get that we pic we talked about. :-)

Sweet dreams all.

James xx

Day 15- The 'M' word.....

MILK!! We've had some really positive news today, the surgeons are much happier with Olivia's aspirate levels and the colour of the fluid that is coming out of her stomach...and have decided she can try some milk in the morning.  Let's hope that the levels stay low tonight and that she keeps the milk down after the feed.

It's very likely that she'll start to cry more over the next few days as she realises that she is very hungry for milk but the levels she'll be allowed will be tiny.  Still no dirty nappy but the doctors think this could be because there is little to come out at the moment.

I played squash after work which was a great release but then felt guilty for getting in to hospital later than normal.  I had a lovely cuddle when I did arrive swiftly followed by a few screams!

There was a newborn that arrived in the ward over the weekend she's got transverse arteries in her heart.  As I arrived she was put an a special travel incubator ready for her short journey to the Bristol Royal Infirmary for her open heart surgery.  If all goes well she'll be home with in a week.....these babies are pretty tough!

James x

Day 14- Small Scar

I arrived at the hospital at about 7pm to find Lisa looking slightly tense or thoroughly pi$$ed off depending on whose opinion you asked.  She'd had a long day today and one of the nurses (amazing as they are) was getting on her nerves (slightly).  Some of them do tend to talk all day for the sake of it and after a while you just want some piece and quiet without having to listen to them regaling about how many bottles of wine they got through at the weekend!!

Rant over back to Olivia!......

According to her nurse she had an unsettled night and was crying right up until the point the surgeons did their rounds at which point she turned in to a little angel and gave them a lovely pose resting her chin on both hands.  Most of the discussion was around how lovely she was and what a little heart breaker she'll be and not so much about how to get her better....oh well. 

Progress wise her aspirate levels dropped again yesterday and were only just in double figures when we left so we're hoping that with a another day or two like that she'll be well on the road to her first feed.  We haven't had a dirty nappy since Saturday morning but I guess there is little to come out now!  Lisa spoke to the doctor who seemed happy with progress and said not to worry at this stage.  On average babies with this condition feed at day 14 so some will be over others under.  Olivia was premature and is a small baby plus she was on antibiotics all last week and her stomach will have taken some punishment when it was outside of her body in the womb, we need to be patient.  If however we get to Friday/Saturday and still no feed then they will give her some dye to try and see if there is a blockage, if there is then it's back to the operating theatre and critical care.......

Below is a picture of her belly button and scar from her operation, the belly button is normal and will get better in a few weeks and the scar from the operation is just below it and a tiny bit to the right of the belly button.  I still can't believe that the surgeons got all of her intestines back inside through that tiny hole!!

I hope you had all finished your breakfast before seeing that!  Sorry!

Other big news of the day was that I completed my tax return, nothing like a last minute rush to get the blood going :-) .

More tomorrow!

James xx

Day 13- The walls are closing in!

Wow it's cold tonight, just back from the hospital via the Layzell's and then my Dad's for a very welcome roast dinner.

Olivia had another good day today and we put her first baby grow on, the stub of her umbilical cord dropped off and we had a visit from Lisa's mum and my dad and his wife.  The baby grow isn't allowed to cover her legs as she has a long line that gos in to her leg just above her ankle that delivers her fluids.

After such fast progress these last few days have been so frustrating, she is settled and seems happy but because her aspirate levels are still up one day down the next she is still nill by mouth.  The surgeons notes from the round this morning were very to the point but didn't really do much to inspire us...- "High aspirates-Plan of action- Nill by mouth."  She produced 84mls in total yesterday which was her highest for a good five days, they were low whilst we were there today but might well be back up again by the morning.

The days feel like they are beginning to merge together now which is not a good sign, when you are sitting in the ward there is very little stimulation apart from the beeping of the machines and the odd cry from a baby.  There are no outside windows in the room where we are so it becomes hard to keep track of time without checking your phone every so often (no watches allowed) and cabin fever is starting to set in.  I'm sure when the feeds start and Olivia starts to spend more time awake everything will change.

New week tomorrow and we have everything crossed for her first feed so we can start to think about a few weeks time when she will be home.  It's not like a broken bone where you have a date when everything should be back to normal by, there are lots of what ifs and maybes with gastroschisis.

Night all .

James xx