More doing, less typing

I often find the busier we are, the less I blog.  We are plodding along as usual, trying to fit in nice educational activities in between appointments, feeding and pumping.

 

The gorgeous Ezekiel is now 5 months old and weighs 12lb.  His list of problems that appears on every letter we get from Nicola gets a bit bigger each time.  We now have a date for the first surgery (3rd December) and he is having his repeat MRI scan this week.

Latest news

We were at the hospital 3 times in the last fortnight.  Ezekiel's hip ultrasound went really well.  His shallow hip socket has sorted itself so no need for treatment.  Malachi has new piedro boots on order.

Isaac had his eye appointment last week.  His operation in June wasn't successful, probably due to his hypermobility so he needs more surgery in October.  Until then he has to wear an eye patch for 3 hours a day.

The bathroom is finally finished.  We have a shower that works and a toilet that doesn't leak!  Next job - fixing the guttering.

Ezekiel currently weighs 4.7kg which is about 10lb 5oz.  We are currently feeding him every 3 hours, which usually involves waking him up to feed and him taking a long time to finish the bottle.  This usually means I have about an hour to get some housework done and play with Malachi before it's time to express and feed again.  I am going to the baby clinic to get him weighed now which is good in a way as I can go when it suits me which doesn't happen so much with home visits.  On the downside we often end up seeing a health visitor who doesn't know Ezekiel and who tries to make "helpful" suggestions when I hadn't actually asked a question.

Although we've had a lot of comments from adults about Ezekiel's lip, some positive, others not so much, children seem to not notice, or not comment anyway.  One of the children In Isaac's class was talking about it yesterday at the end of school and Isaac's friend interrupted him saying "but he's cute and we love him".  Sums it up perfectly and made me smile. 

Lastly I haven't got a date for Ezekiel's first operation.  I'm trying not to think about it which isn't helped by people constantly asking.

Back to school

This year the summer holidays have mostly involved activities at home.  We usually go out a lot in the school holidays but going out with 4 children, a wheelchair and a double buggy is challenging to say the least. 

I decided to take a book or film each week and do activities around the theme.  I also wanted to make sure we did some messy play, to try and encourage Isaac.  I think we did well, considering we have a small baby.

Malachi making paper dolls in hairspray week

 

Jeremiah in the secret passage during famous five week

 

Isaac making snow angels during the lion, the witch and the wardrobe week

 

Playing with spaghetti during harry potter week

 

We even made it on holiday to Wales, where Jeremiah climbed Snowdon

 

Isaac wheeled himself round Cardiff.  Malachi kept trying to make breaks for freedom and Ezekiel mostly slept and fed.

 

So now the older boys are back at school.  We are having our bathroom refitted so mostly I am keeping Malachi out of the way of the builders.  I'm also focussing more on Malachi-centred activities rather than helping him join in with whatever I have planned with the older boys in mind.

 

Ezekiel's needs are still mostly milk, cuddles and sleep.  His weight gain has slowed down so we have been trying various things to help that.  Weigh in tomorrow and then hip scan on Thursday.





 

 

 

 

The rest of last week

Last Tuesday, Ezekiel and I went to the breastfeeding group.  As it's for mums with babies up to 4 months now we probably won't be able to go again before Ezekiel is too old.  Still, it was nice to have a chat to other mums with babies the same age as Ezekiel.

Wednesday was my day off!  Well, a day off from appointments anyway.  I spent a big part of the day sorting out the outgrown clothes and putting them in labelled boxes to go up in the loft.

Thursday was mine and Ezekiel's 6 week check.  All fine except my blood pressure was a bit high.  I was holding a screaming Ezekiel at the time and willing the appointment to be finished so I could go and feed him so that's probably why. 

Friday was physio.  Ezekiel has low muscle tone in his arms and core and high muscle tone in his legs.  We have some exercises to do with him and we see her again in 2 weeks.

Jeremiah and Isaac finished school on Monday.  The health visitor came to weigh Ezekiel on Monday and she is so pleased with his weight gain we only have to get him weighed once a week now.  This week has mostly been taken up by feeding, pumping, housework and various activities at home.  I haven't attempted to take all 4 of them out on my own yet.  Tomorrow we will be picking up the big car from the Vauxhall garage.

A busy week

Last week my mum and dad were staying so I decided to get some appointments out of the way while I had the chance to leave Malachi with my mum and be chauffeured around by my dad.

On Sunday, Isaac had a birthday party to go to.  Unfortunately I hadn't realised it would be a disco and I'd also forgotten to bring his ear defenders so it was a bit of a disaster and after 45 minutes of Isaac refusing to go more than a few yards away from the entrance we gave up and took him home.  I did get to show off Ezekiel though which was good.

On Monday, Ezekiel had an appointment with audiology followed by another one with Nicola.  He passed the first hearing test.  When it came to the second test there was too much interference so we need to go back next month for another go.  As I was coming out of Audiology I ran into the chaplain who conducted Elisha's funeral.  It was so lovely to see her again and to show her Ezekiel.  Then we went to see Nicola and Julia, the dietician.  They were both really pleased with Ezekiel's progress.  Nicola is going to keep an eye on his weight gain, muscle tone, clicky hip and head size (basically everything except his cleft lip and palate).  Ezekiel's results of his initial genetics tests have come back normal and Nicola also explained why Ezekiel needed CPAP after really good apgar scores.  Basically, the apgar scores show a baby's condition in the few minutes before birth.  So Isaac, who had an initial apgar score of 5 was distressed in the last few minutes of labour but recovered quickly.  Ezekiel was perfectly fine before he was taken out but after 30ish minutes of being born, his lungs got tired and he needed some help.

Will update on the rest of the week tomorrow.

Now we are six

According to Jeremiah we weren't a "proper" family of 6 until Ezekiel came home.  He came home on Monday and it's been so lovely being home with all 4 of them together.  He is still struggling with weight gain and still very sleepy and floppy.  But he is home and that's something to celebrate.

Jeremiah turned 7 yesterday.  My biggest rainbow baby is looking very grown up these days, with 2 of his baby teeth gone, an obsession with lego and beginning to favour star wars over Thomas the tank engine.

How tiny I thought he was then but also how huge he was compared with Ezekiel.

Jeremiah aged 4, with Isaac aged 2

 

and last week, with Ezekiel

 



 

Last week was sports day for Jeremiah and Isaac.  I must admit I was dreading it when Isaac said he was doing a running race, remembering my own sports day humiliations but the school handled everything really well.  Isaac and the other children who have mobility problems were given a head start, in fact Isaac started half way down the track.  Isaac came joint 3rd out of 4 in his race.  Jeremiah was in the relay and his team came 3rd out of 4 so they are both the very proud owners of a bronze medal each.

 



Jeremiah's due date

Sometimes I acknowledge this day and sometimes I don't.  Well actually it was yesterday but Simon was on the computer yesterday evening when I remembered what day it was.  7 years ago I was 40 weeks and 1 day pregnant with Jeremiah.  I'd been in latent labour for a while by then, nearly 2 weeks I think. 

With Eleanor and Elisha, their due dates seem so important because they are their "should have been" birthdays.  With Ezekiel, his due date will be used on growth charts and for his operation dates for the first year of his life.  He will have 2 ages, his actual age, based on his date of birth and his corrected age, based on his due date.

For Jeremiah, Isaac and Malachi, their due dates don't seem to matter at all.  I never expected them to come on their due dates and none of them did.  Although Malachi came fairly close, arriving at 40+2.

Recently I was talking about due dates with Jeremiah.  I was trying to explain to him that Ezekiel was unlikely to come on his due date (didn't think he'd be that far off though!) and telling him when he, Isaac and Malachi were born.  He was shocked that he was born at 11 days past his due date and very impressed that Malachi was only 2 days past his.