Summer holidays

Finally whatever happened to stop me uploading photos has resolved itself.  We're now halfway through the summer holidays.  Jeremiah is on his way home from Scotland after climbing ben nevis.  Isaac is mostly resting and refuelling ready to start year 3 in September.  Malachi is excited about starting school.  Ezekiel has had 5 lumbar punctures and 3 MRI scans so far and still no further forward than we were at the beginning.  Zechariah is crawling and generally getting into everything.

Still here, still plodding along

I haven't had much time to blog lately.  5 boys keep me busy and with Simon working from home a lot lately I'm struggling to get on the computer.  Jeremiah is much the same, still interested in weird facts and lego.  Isaac has lost his first tooth, making more friends at school and desperately trying to keep up with them.  Malachi is now fully toilet trained in the day and still causing chaos.  Ezekiel is his usual happy self.  Zechariah is just plodding along, meeting milestones a bit later than average but getting there in the end.

There is no "m" in Zechariah

Introducing Zechariah Joseph, born on 13th June 2014 weighing 7lb 6oz.  Malachi insists he is called "Zechamiah", which has led to Isaac shouting "there is no m in Zechariah" on a regular basis!

2013, a year in pictures

2013 was an eventful year.  We started it with me 14 weeks pregnant with Ezekiel, Malachi not yet walking, Isaac struggling with part time school and Jeremiah much the same as he is now, but shorter!

Malachi contemplating the snow

 

Ezekiel in 4d

 

Ezekiel is born

 

and we spend the next 4 weeks going between him in special care and the others at home

 

Meanwhile, Jeremiah and Isaac both win bronze medals at sports day

 

Ezekiel comes home, just in time for Jeremiah's birthday

 

We spend the summer holidays mostly at home, doing various things

 

We go on holiday to Wales where Jeremiah climbs Snowdon

I try to take as many photos of Ezekiel as I can

Ezekiel has his first operation

 

Happy 2014 everyone

 

 

 

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.