Day 12- Pootastic

Well after 3 days we finally got what we wished for in terms of a dirty nappy which was great news!  Olivia's aspirate levels have been very up and down for the last few days and today they were still running fairly high by time we left.  It's very frustrating because she wont be allowed any milk until they fall right down and change to a much lighter shade of green.  She will be two weeks old in the early hours of Tuesday and it would be brilliant if we could celebrate with her first feed.  She grows more hungry by the day and has a vast store of milk waiting that Lisa has been expressing every three hours since she was born.

Nanny Earp came to visit today with Alex, they were both thrilled to see her again and she opened her eyes for a good 30 mins whilst they were there. Not much else to report, steady progress but we feel we are stalling slightly on the feeding front and this is such an important stage, until she is feeding consistently without any major problems we can't take her home.  Her neighbour with Gastroschisis is still throwing up a lot of his feeds and has been there 6 weeks and counting....the baby next to him (not gastro) celebrated his 100th day in NICU today, I do not want to be celebrating that milestone in hospital.  

I managed to miss her with her eyes open but here are a couple of pics from today:

Night all, more tales from NICU tomorrow!

J x

The Missing Picture

I'm not sure that Olivia will thank me for this one when she's older and reading this back.  I was sure I'd seen a picture taken in the seconds after she was born where her intestines were visible in the surgical bag they were put in to keep them as sterile as possible.  I've just gone back through the pictures and have found it, it's not very clear but you make out what looks like a long continuous string of sausages!!  Not for the faint hearted......

  

She's clearly not impressed :-(

Day 11- A mixed bag

Today has many more positives than yesterday but still a few worries. 

The good news is that Olivia finally has the use of her hands back! I wasn't greeted by a wave or even a high five this evening but by Olivia sucking and chewing on her tiny little hands looking very pleased with herself. They'd had cannulas (tubes) inserted for antibiotics and spare in case they needed access for anything else, she was getting very frustrated having her fingers taped down and two pieces of foam attached to them.  This is another step forward and all the tests they had run for diseases like meningitis earlier in the week had come back clear so the antibiotics were stopped.

Other good news is that the aspirate levels have dropped again today and when we left this evening they had only taken 4ml out of the tube, the measurements run from midday for 24hrs and yesterday she had produced 74mls up from 33 the day before.

The bad news is that she still hasn't had a dirty nappy for nearly 3 days now which is not great, they gave her a glycerine suppository to try and get things moving but no joy.  The surgeons will see her in the morning but in the meantime we wait with bated breath for a bowel movement- "A poo a day keeps the doctor away"...or so I'm told.

 

Nick was home from London for the day but couldn't meet Olivia due the swine flu regulations, it's getting very annoying now!

Back in tomorrow morning and wishing for a bumper day of a first feed and a dirty nappy, oh how my life has changed! :-)  Have a great weekend everyone.

James xx

Day 10- A lump in the road

Evening all, we've had a bit of a mixed day today and the blip that I thought was around the corner has finally arrived.

We were hoping for Olivia's first feed but sadly that hasn't happened and after 3 days of falling green bile/aspirate levels there was a slightly worrying rise in the amount and colour of todays fluid.  No where near the levels of this time last week but I hope it's just a blip and can probably be explained by the lack of any dirty nappies in the last 24 hours, one tonight would be great Olivia! 

Apart from the fluid levels, no dirty nappy and some very sore blistered lips from sucking the dummy so hard over the last couple of days she is still doing well.  We'd much prefer for her to get better in her own time rather than be selfish and rush her to feed.

Lisa took a great picture which could almost pass as a smile but my bet is on wind or a dream about milk!!

It's getting harder and harder to leave her in hospital when all you want to do is take her home and give lots of cuddles but she is in the best place for now and the surgeons, doctors and nurses are brilliant.  I don't think I could go through the constant emotional roller coaster each day of my working life.  They seem to get very attached to the babies and all gather to say goodbye when a baby leaves the unit.

Olivia has two other neighbours who also have gastroschisis, both boys.  One family are from Plymouth and make the journey up to Bristol as much as is possible but their baby has been in NICU for 6 weeks now so they must be shattered.

I had my first bad day for a while mostly brought on by a stressful day at work followed by the 1hr 30min drive in to Bristol through the rush hour, must keep positive!

Still no real news about the very poorly twin, the machines are keeping him going but his mum hasn't been in for a couple of days now so not sure what is happening.  Perhaps she's staying away to prolong the inevitable. :-(

Lisa's sister Jess and family made it back from holiday today and was great to see them all this evening, still no visitors to NICU which is very frustrating for everyone.

Right, night all.  Let's hope for better news tomorrow.

James.

Day 9 and looking good

I'm becoming slightly paranoid that we are having a very good run of positive days and progress, not that I would want it any other way but the when a bad day does arrive hopefully it will only be a blip and not a fall.

Olivia and Mummy have had a good day with another dirty nappy (for Olivia) over night and continually falling green aspirate levels.  The horrible bag that was catching the fluid from a tube that originates in her stomach and comes out of her nose is gone, the tube remains but the nurses use a syringe to drain any excess off every three hours.  Overall the levels are halving each day and if she has a good night and the surgeons give the green light in the morning she 'may' be able to have her first meal of breast milk!!  It wont be from a bottle or breast but will be through another tube directly in to her stomach.  This is more to do with making sure the tiny amounts they put in go straight in to her stomach, she'll be starting with just 1ml!!  For all you oldies there are 568ml's in a pint.

Auntie Jess, Uncle James and their two girls are back from Antigua tomorrow, it will be great to see them after two weeks and Lisa has missed having her sister around since Olivia arrived.  Still no visitors in to NICU (we ask everyday!) so Jess and Nick will have to be patient to meet their newest relation.

Further news on the boy twin; we have not seen his mother today but he is still there fighting away and his name remains firmly on the board in the corridor with the 26 other babies.

Thanks to everyone who has emailed, commented and text me regarding the Blog, I've managed to make a few people cry by the sound of things...sorry!

More tomorrow and keep the positive thoughts coming as they seem to be working.

James x

Day 8 - A Week Old!

Olivia is a whole week old as of today and a mini milestone was reached, you really do grasp every tiny positive with both hands and dare not let go for both her sake and our sanity.

I decided that I should make another appearance at work so reluctantly left Lisa to make the journey in on her own.  The first report of the day was positive and another dirty nappy over night was good news all round. Olivia's grandma Earp visited in the afternoon and was treated to her first cuddle with her first grandchild.

I arrived at about 7pm after a long day at work and had some lovely cuddles, I managed to avoid a nappy change by going to sterilise Olivia's dummy :-)  Other good news was that her green bile or aspirate levels had dropped again and were starting to look slightly less like seaweed!

Lisa had a tough encounter with one of the other mums whose little boy was next to us in critical care, he was a twin who had not received enough nutrients from the placenta whilst in the womb.  His lungs collapsed in the last couple of days and the doctors have said that if there is no improvement tomorrow they will have no choice but to switch the machines off.  Lisa looked after her other young children whilst her ill son was blessed in the critical care room.  Poor little thing, 9 months of competing in the womb with his twin and now his short life is over before it has begun.

We left Olivia in good hands and headed home for some food and sleep and kept everything crossed tomorrow for the twin and for continued progress with Olivia.

Other good news is that the Blog has finally gone live and seems to be well received by everyone. Make sure you check back each day and you can become a follower so you get mailed when a new post is added.

Thanks to everyone who has sent cards, flowers, gifts, meals, support and best wishes, we really appreciate you all! 

J

Day 7-Monday- a new hope

Today was the day that Olivia was due to be born and last week seemed like a lifetime away.  I took the day off work as we needed to support each other after the tricky day before. We walked in to the hospital expecting the worst but were pleasantly surprised to see her sleeping well and smiles on the nurses faces.  She had had a good nights sleep and had two poohy nappies which was music to our ears!

The doctors did their rounds and seemed much happier with her, the amount of fluid being drained was falling slowly and she seemed happy.  The blood tests were looking good so we were pleased.  Within half an hour we had moved rooms again out of the high dependency ward on to close observation where everything seemed much more relaxed with a sense of normality.

Olivia was less than impressed with the protective boards on her arms as it meant she couldn't suck her fingers or hold our hands but they were needed for access for fluids and blood tests.  We had lots of cuddles and all was well when we left her late evening.  Fingers crossed for another day like today!  It ended with a lovely meal at Tim and Laura's,

Day 6- Sunday- 2 steps forward, 1 step back

We arrived at the hospital expecting another day like the previous with lots of cuddles and more progress.  Instead we had a very long tough upsetting day.  She was very agitated and wouldn't stop crying, the amount of bile had increased and was a horrible red and brown colour.  Lisa was tearful and everyone was concerned.

Olivia was clearly very hungry, she was sucking her dummy inside out and just wanted some milk but the doctors insisted that no food would be allowed for a good few more days.

Around mid afternoon the doctors came round and decided that an X-ray and blood tests were needed to see what was going on.  It was also decided that antibiotics were needed to stave off any infection that might be taking hold.  We anxiously waited for the surgeon to come ad talk to us about the X-ray results, she eventually arrived at about 7pm and said that it all looked ok but there might be a blockage in the intestine and that was why so much gunge was coming out of her nose.  If it continued then another operation might be needed to open her up again and try to find the blockage....

We left the hospital very upset and down, we knew there would be tough days and this was certainly one of those.  2 steps forward and 1 back.