Chronic Lung Disease


In a mix up Esther is now attempting 7 hours off CPAP with 5 hours on!  It was supposed to be the other way around!  Apparently she lasted 6 hours last night and had a good gas.

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.

Dr Long says not to be surprised if he is still needing oxygen at 36 weeks, and could even go home with oxygen support.  In spite of all this the doctor is pleased with him and he is doing well for a baby born at 27 weeks.  He is slightly anaemic again with Hb at 9.7.  Another blood transfusion may be on the way in a few days.

The doctor is pleased with Esther too.  She also has CLD and will need continued oxygen support up to 36 weeks and may come home on oxygen.  This is more likely for Esther than William as her oxygen requirements are still substantially more than his.  I need to research CLD, find out how common it is and what the repercussions can be.  One of the main things is that they are more likely to have asthma and other respiratory problems in their early years.  My poor babies!  We need to see how they each progress over the next 4 or 5 weeks. 

Esther has also gained weight and now weighs 1410g which is approximately 3lb and 1oz. 

Esther has now been cannulated for her blood transfusion.  Now we wait for the blood to arrive. 

I have done both their ‘all cares’ today and dressed them too.  They both seemed to enjoy the attention today.  In fact Esther seems generally more settled but she is in a lot of oxygen.

I asked Louise about the lung disease.  There are two definitions

A baby still needing oxygen support at 28 days

A baby still on oxygen at 36 weeks

So really we still have four and a half weeks to wean off our O2 dependency before things get too serious.  However, because they are still on oxygen at 28 days of age, each winter they will have a series of injections to protect them from Respiratory Synctial Virus (RSV).  The virus can cause severe lung infections and commonly causes infection in young children.  Esther and William will have an injection each month from October to February to protect them from this virus.  We also need to follow some very strict advice through the winter months, especially this first winter.

Key advice

Don’t let people with young children visit for the first few weeks that we are home

If we take the babies out to a public or crowded place keep their raincover over their pram to protect them from germs

At home do not pass the babies around lots of visitors – have a look but not touch policy through the winter months

Keep people with colds away from the babies in winter and spring

Anyone who does hold the baby must wash their hands before doing so and use an antibacterial gel

Clean and disinfect baby toys regularly

Make sure people understand that this is not us being precious, it is a real risk and the result could be readmission to hospital and serious illness with long lasting effects

I am going to email everyone when we bring them home about visiting and say in the email – please do not ask to hold the babies, and if you feel that you have to ask do not be offended if we say no.  We will offer cuddles when we know the time is right.  It will be hard for some people to understand but it is something that we have to do!

I came back from lunch and milk to find William hi-satting in 22% ambient oxygen and the nurses preparing the blood for Esther’s transfusion.  Dorota was doing her first transfusion under Louise’s supervision.  It was quite fascinating to watch actually and I did not feel too queasy!  Esther definitely needs the top up though as she is regularly desatting in 28% oxygen.  Poor little Star!  Hopefulyl this will help to make her right, make her better.  I love you little Esther Grace.  I love you more than all the world!

3pm.  Transfusion has started.  All being well the blood will be through by 7pm.  Oh no!  It is 3pm!  Esther is going back on her CPAP and we have not had story time today!  Hopefully she will have a nice cuddle with her Dad later which will make up for it.  I am glad that she is on CPAP while the blood goes through though.  I am glad that she has that extra support, though she is not!  She is kicking up a right fuss!  Bless!

4pm.  William is in to his 8th hour off CPAP and is in air!  He is having some desats but they are fleeting and self correcting.  He is doing so well! 

Esther’s CPAP is 25% oxygen and she seems stable.

Today has seemed a long, long day and there is still nearly two hours until David comes.  Then we will have cuddles.  I am looking forward to that.  It is my turn to have William today!

It is possible, if William has a good night, that he will be off CPAP all day tomorrow and then hopefully his night time hours will gradually be reduced until he is completely weaned.  Very exciting but scary too!  But I really do think that he is ready for it.

William has helped to speed up my afternoon!  There was a nasty whiff from his usually sweet smelling incubator so I began to change his nappy and then he projectile pooed all over his cot!  Thankfully he was due a new house tomorrow and so he just got it today instead!  I did clean all the mess from his old incubator though, I just felt so bad leaving it for anyone else to do.  William was oblivous!  Wide awake and alert and looking as if butter would not melt!  He was so funny and I love him all the more!  And he coped so well with the move, hi-satting continuously in air, even when out for a cuddle in the real air!  Just while his house was changed, but it was lovely!

Esther’s cares are due at 6pm but I am leaving them for her Daddy to do after my recent experience with our son!

I must do some milk!

I didn’t get to do milk in the end.  Esther was wide awake and so I did her nappy before David arrived.  When he did come we had them out for a good, long cuddle.  David held Esther and I had William.

Such a lovely way to end the day!

About willest

Very proud 34 year old Mum of twins William and Esther, born on 24th July 2010 at 27 weeks and 3 days
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