Ezekiel's new smile

On Monday Jeremiah Isaac and Malachi went off to Simon's Mum and Dad's house.  At the ridiculous hour of 5:30am on Tuesday me, Simon and Ezekiel set off for Bristol.  After some waiting around we were shown up to the ward and before I had time to get nervous Ezekiel was weighed, name tagged and gowned up.  The anaesthetist came round to see us and so did the surgeon.  Simon signed the consent form and the phone call came to say that they were ready for him in theatre.  The nurses pushed Ezekiel the short distance to theatre in his cot with Simon and I trailing behind.  Simon held him while he was put to sleep and then we both kissed him goodbye. 

We then had 3 hours before he would be finished so for the first time since Ezekiel was in special care we were on our own.  I wanted to get out of the hospital so after giving the nurses our mobile numbers we went off.  We had a mcdonalds breakfast and then went to asda.  We went back to the hospital and got the suitcase out of the car.  We still had a while to go so we went off to the restaurant which was bigger than I remembered and had a drink.  We went back to the ward and waited.  A magician came round to entertain the children so we watched that and waited some more.  Finally a nurse came and said that he was out and in recovery but they were struggling to wake him up so he would be moving to HDU.  So we moved the buggy and suitcase to HDU and went off to recovery.

When we walked into recovery I was listening out for the sound of Ezekiel screaming but there was silence.  When we got to him he was being cuddled by a nurse and was still fast asleep.  The porter decided the best way of taking him back to the ward was for me to sit in a wheelchair and hold Ezekiel while the porter pushed.  So off we went and the nurse from recovery disconnected Ezekiel from the portable sats monitor and attached him to the big monitor in HDU.  I sat in the chair and cuddled Ezekiel thinking that 6 months previously I was also cuddling Ezekiel in HDU.

Simon went home at about 4pm and about an hour after that the dr came round and said Ezekiel was doing so well we could move out of HDU.  So off we went to Otter bay where we were sharing a room with 2 little girls.  At 8pm we were on the move again and this time we were in Starfish bay which was a bay with about 12 beds in and seemed to be where all the children who were in short term for operations were.  So most of them had been in theatre that day and Ezekiel was the only one who slept though the night.  Thankfully when the cleft nurse came round later that morning she said we could go home as soon as the medicines were sorted so at 2pm we were on our way home.  Big sighs of relief all round.

Next week Isaac is having his squint repaired.

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.

Plodding along

Ezekiel is much the same.  Still sleeping a lot and still struggling to breastfeed.  I've got a cold so I'm not allowed into the neonatal unit.  On the plus side he is now officially "term" and I can now say that he was born premature rather than he is premature.  He has his discharge meeting on Wednesday and hopefully we'll be able to take him home soon after that.

Malachi is doing really well with his walking and his speech.  Simon has been taking him on the school run without the buggy so he has been getting a lot of walking practice.

Isaac is much the same too.  He has his squint repair on 27th June which is scarily close now.  Sports day is also looming and I need to talk to the school senco about how Isaac is going to take part.  His blue badge expires soon as well, must get that renewed.

Jeremiah is enjoying his swimming lessons at school.  He got his first swimming certificate yesterday, along with the rest of the children in his class.  http://www.stjohnscofeprimary.co.uk/keyinfo_detail.asp?Section=3&Ref=186

I am still pumping and struggling with the sitting still aspect of recovery from surgery.  No doubt in a few weeks I'll be desperate for a rest and won't be able to!  Simon is going back to work on Monday so his mum is coming to help do all the things I still can't do yet.

Life in special care

Now I've talked about Ezekiel's birth I should talk about what happened afterwards.  I was discharged from hospital on Thursday.  Ezekiel was moved from intensive care to special care on Thursday as well.  He is struggling with feeding and maintaining his temperature.  Nicola was concerned about the size of his head so he had an ultrasound and MRI scan.  This showed that he had enlarged ventricles in his brain and also extra fluid.  The images have been sent to Bristol for further investigation.

Due to his cleft lip and palate and his prematurity Ezekiel is struggling with feeding.  He has a feeding tube and he is also bottlefed with a squeezy bottle.  We have tried breastfeeding with a little bit of success but that is going to be a big challenge.  Meanwhile, I'm expressing.

My new camera arrived this morning so hopefully there will be more photos soon.

Ezekiel Matthew

At 9:47am on 3rd June 2005 I was waiting for a scan that would tell me whether my first child was going to live or die.

At 9:47am on 3rd June 2013 my sixth child, Ezekiel Matthew was born by C-section at Musgrove Park Hospital, Taunton, over a month early.

Most people who know me know that I don't usually do C-sections, or early babies.  I'm more of a natural, overdue, just under 9lb baby kind of person.  But sometimes things don't go according to plan.

I had a lot of waters and last Saturday morning they broke in a rather spectacular fashion.  Despite this being my 4th pregnancy to get this far the midwives wanted to check they had gone so off we went to hospital.  They weren't sure what position Ezekiel was in as they could feel what they thought was a head but they could feel feet as well so they thought he might be breech.  So I was scanned and he was head down, although slightly to the side and one of his feet was by his face.  I still had a lot of water and he had a lot of space to move around.  I couldn't deliver him naturally like that and we had to weigh up the risks of waiting verses doing something.  In the end it was agreed that I would need a c-section but not yet.  So I had steroids to develop Ezekiel's lungs and we did a lot of waiting around and being nil by mouth while emergencies came up, people were bleeped and plans were changed again and again.

Finally on Monday morning I was taken to labour ward.  Simon donned a very fetching set of scrubs and we went to theatre.  Between them, Simon and the anaesthetist took loads and loads of photos.  The surgeon was the same one who did my operation to remove Elisha and had been Ezekiel's consultant since we found out about his cleft lip.  Ezekiel was born shouting but while I was being sewn back together he started to have breathing problems so after letting me have a very brief cuddle he was taken to neonatal intensive care.  I was taken back to labour ward and sent Simon down to the neonatal unit to see what was happening.  I couldn't go and see him until the spinal wore off which was extremely frustrating.  Jeremiah, Isaac and Malachi came after school and I finally got to go down and see him.  The next day I could walk down whenever I wanted which was nice but being on the postnatal ward was awful.  I was discharged on Thursday but Ezekiel is going to be in hospital for at least another week.  He has Isaac and Malachi's paediatrician looking after him so he is in good hands. 

Simon holding Ezekiel in theatre

 

Ezekiel

 



Quick cuddle before he went to intensive care

 

Ezekiel in intensive care a few hours old

 

Ezekiel on day 5 in special care



Introducing...

Our 2nd rainbow baby

Currently known as "Severus" (for those of you who have read some of the Harry Potter books but not the last one, he turns out to be a nice man in the end!).  Due in July, just after Jeremiah's birthday.  As you can probably see from the photo, Severus has a cleft lip.  We don't know about the palate yet but in the bottom photo he/she is sucking his/her thumb which we are hoping is a good sign when it comes to feeding.  For the benefit of my readers who have suffered baby loss and/or infertility I will try to remember to include (pregnancy mentioned) in any pregnancy related blog entries so you can avoid reading them if you prefer.

In other news, Isaac's DLA has been awarded.  Same rates as before (middle rate care, high rate mobility) but for 5 years this time instead of the usual 1-2 years.  We have decided to get a car with the mobility component this time so we have chosen a silver vauxhall zafira and we are currently waiting for the motability people to check and approve the paperwork before the vauxhall garage order the car.  Meanwhile I'm trying very hard not to get impatient.  We've been without a car we can all fit in for about a year now and I've really missed being able to go out places as a family.

This week I've been...

...Suffering with a cold and doing Isaac's DLA form.  I hate that form, 63 questions where I have to compare Isaac to a "normal" nearly 5 year old and explain the differences.  Also a new question wanting details of all appointments for the last 12 months.  All done while trying to have a conversation with Malachi about the Octonauts.  At least it's done now and I just have to hope that it's renewed at the same rate as before, for longer than a year this time.

Malachi's 2 year check

Today we went to see the new health visitor for Malachi's 2 year check.  Apart from flinging himself on the floor in a massive strop and making me feel like the worst mother ever, he did well and the health visitor ticked all her boxes.  However she said she was very concerned about his height as he hasn't grown since he was last measured in december although his weight has remained steady on the 9th centile, where it has been since the reflux stopped.  So she is going to speak to the GP about it and review his height again in June.  He has come a long way and is doing really well.

Meanwhile I left Isaac in a bad mood at school this morning and not even his favourite teaching assistant could cheer him up.  I'm waiting in the very long telephone triage queue to speak to the GP about his legs as the antihistamines don't seem to be working.  He managed a whole week at school last week, although he spent most of Friday in his wheelchair.

Jeremiah had a visit from the tooth fairy this week and now has another wobbly tooth.  He's looking very grown up these days and unlike Malachi he seems to be growing at an alarming rate.  Still, it will be good news for Isaac when he gets a whole load of barely worn hand me downs!

March already

So it's already March and I haven't blogged since the end of January.  4 weeks until Easter holidays (yes, I'm counting) and things are ticking over with a few big changes too.  Jeremiah has his first wobbly tooth.  Isaac has started full time school this week.  Malachi has moved from the cot to a bed which means a lot less sleep is being had by me.  It's a good job he's cute or the "hello mummy" at various intervals through the night would be a lot more irritating!  Got 6 hours sleep last night which was a vast improvement.  I won't even mention what the other nights were like!  Not much else has been happening, just little things like Isaac going into school happy today.  He is also on antihistamines while the GP tries to work out whether is red and swollen legs and feet are an eds thing or an allergy.

The difference between full blown EDS and otherwise symptomless hypermobility was demonstrated yesterday.  Jeremiah leant forward and put his head between his legs.  Don't ask me why, I think it's just one of those things that children do that make no sense at all.  Isaac tried to do the same thing, went too far, lost his balance and hit his head on the pavement, oh dear.  Hopefully he's learnt that it's not always a good idea to copy his brother.

Long time no blog

Just realised I haven't blogged in over a month.  So here is a summary of what we've been up to.

Isaac did his nativity play at the church with the other children in the reception class.  Much to my surprise (and the teacher's too, I think) he went on the stage with the other shepherds with a huge grin on his face and a lot of waving in my direction.  Timmy the sheep came too, which helped I think.

 

 

We remembered Elisha, born to soon a year before and Eleanor who would have been 7 at around that time too.

 

Christmas came and went with the usual excitement and chocolate consumption.

 

Followed quickly by Malachi's 2nd birthday.  Two years have gone by so quickly.

 

Then the snow.  Jeremiah and Malachi loved it, Isaac wasn't too sure.  Malachi, always wanting to join in with the big boys, insisted on going out in the snow and walking round the garden holding my hands.

 



 

This little one is just starting to walk.  Plodding along with an intense look of concentration on his faceand then falling on his bottom after a few steps.  He is getting there, slowly but surely.