Lo Flo!

25.8.2010

From 9am – 11am this morning has been very busy, though still no sign of the doctors.  David and I arrived to find Esther and William in the same incubator again, just for a short while as Esther was getting a new house.  At 9.30ish she was moved back and I did William’s cares.  He wee-ed all over his bed so I changed his bedding and his clothes too!

At 10am William came off CPAP and instead of oxygen in his incubator he now has Lo Flo oxygen which goes through a tube in his nose.  He started on 0.05 of a litre and is now on 0.02.  He has not had a desaturation for one hour and twenty five minutes!

Esther also has Lo Flo but her oxygen requirement is higher and she still has regular desats.

Esther’s weight stayed the same overnight and William gained 46g and is back up to 1690g.

Dr Long is doing a proper round tomorrow, for today we are trusting Jane’s decisions. 

William is now on 25mls of milk every 2 hours and Esther is on 20 mls 2 hourly.  Esther will try for 8 hours off CPAP and 4 hours on.  William is trying all day off and 6-8 hours on over night.  They are both now having nasal cannula oxygen instead of ambient whilst they are off.  This means that they can come out for cuddles at any time and also can spend some time together in the same incubator.  We are making slow progress in the right direction. 

Came back from lunch to find both babies quiet and stable.  William’s oxygen saturation was 100%.  Esther was having some desats but they seemed to be fleeting.  So far so good.  All there is for me to do is watch and wait. 

The temperature in both their incubators is down to 29 degrees.  Jane is getting them ready for the big wide world, or an open cot at least!

I am getting very slack with my milk.  Today I did it at 7.30am and 12pm so far, that is a gap of 4 and a half hours, I need to get down to gaps of no more than 3 hours. My schedule should be

6.30am, 10am, 1pm, 4pm, 7pm, 10pm and 2am

But it never is, life just seems to get in the way!  Doctors and cuddles are the main routine busting events!

Jane has just explained that all being well William will stay off CPAP until 11pm tonight and then go on until 5am when he will come off again.  At the moment his nasal oxygen is set at 0.01.  Esther is set at 0.08 and and there is a larger meter on stand by for her in case she needs much more.  They both, at the moment, seem settled and stable.  Touch wood!

Have arranged with Jane to have the babies out for cuddles after lunch.  We are both going to lunch from 1pm- 2pm.  I am going to cuddle both babies from just after 2pm to 4.30pm.  Then I will do milk and then have story time with each before going home when David gets here.  Hopefully the IKEA delivery will have arrived.

First Cuddle with both Twins 15th August 2010

After lunch had a lovely cuddle for about an hour with both babies.  I then changed both their nappies and settled them down. 

While I was doing cares Jane took swabs for MRSA.  Now I know that they do this routinely but today the swabs were labelled NICU Screen and all the babies were done at once.  I have a feeling that either the swab was not testing for MRSA or that MRSA is the infection on the ward!!I have no idea as no one is allowed to tell us anything. But, the swabs were taken straight after a meeting to discuss the infection.  We get the results in 2 days!

After cares I had a quick cup of tea and did milk. 

When I came back William and Esther were both fast asleep.  They seemed stable with very fleeting desats.  This was in spite of their oxygen prongs often being nowhere near their nose!  I read both babies ‘I Love You Sleepyhead’.

By 5pm I realised that William’s Lo Flo was on 0.  No oxygen!  And he seems really quite stable.  Esther’s is on 0.12 which roughly equates to 26/27%, which is the level of ambient oxygen she needed for much of the time.  And again she seems quite stable.  I think that in an ideal world they should be keeping their respiratory rate below 70 and they are managing that much of the time.  We will see how tired they become.  They have both taken big steps forward today, I hope that those steps will not have consequences!

Just waiting for David now.  I am ready to go home.  Milk plan for tonight is 7pm and 10pm, 2am and 6.30am.  I am so tired but need to maximise milk supply in readiness for breastfeeding.  Esther and William are 32 weeks today.  It can’t be long now!

I am getting much more confident in the unit.  I am not afraid to ask questions, I chat to the staff and some of the other parents, and grandparents.  Today I also told someone that they should not have their mobile phone on in the ward!  Perhaps having some time out over the next few days will do me good, though I will miss the little ones like crazy!  I will be doing things that are for them.  Things that have to be done before they come home. 

I was restless by the end of today and just wanted to go home.  I feel like I am a terrible person for saying it but I just feel for the first time that I need some time away.  I think it is because of the stressful atmosphere in this room now it is full of incubators and buzzers like NICU.  And with not knowing what is going on with the infection. 

I have told Jane my plans for the next few days and attached a schedule of my comings and goings to the babies’ notes, hopefully that will avoid any confusion.

Think this week also tough as had hardly any visits with Clare and Michele both away.

Hurry home ladies!

Chronic Lung Disease

Dr Long saw the twins this morning. William first. Everything is to stay the same with William. He is now classed as having ‘Chronic Lung Disease’ (CLD). This is because he still requires oxygen support at one month old.

http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/respire/cld.html

Dr Long says not to be surprised if he is still needing oxygen at 36 weeks, and could even go home with oxygen support. Continue reading

Happy Birthday Grandad Henley love from your Grandtwins!

William is now being fed 24mls every two hours. The idea is that he starts to experience hunger and he did! 15 minutes before feed time he got very cross and started looking for food! He had to be fed 15 minutes early and then he calmed straight down. Now I hope that he does not throw up all over his nice new clothes and bedding! This is a very positive step towards breastfeeding. Next step to put him to the breast during his tube feed so that he associates being at the breast and feeling full. I cannot wait to try feeding him myself. It is such a natural other child thing to do and I have not even been able to try! Continue reading