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.

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.

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



parents evening and physio

So parents evening was last night and both boys are doing well.  Jeremiah's teacher had an appointment system and Isaac's was a drop in so Simon went to Jeremiah's and I went to Isaac's with all 3 children in tow.  Jeremiah asked Isaac's teachers how he was getting on which was super cute.  Isaac's teacher said that underneath the grumpy exterior there is a happy, bright little boy trying to get out.  Jeremiah's teacher said he can read more words than anyone else in his year.

Malachi's physio appointment was this morning.  He's doing well and getting close to walking.  He can walk pushing along Isaac's toy fire engine for a few steps but he prefers to sit on it.  I asked about getting him a kaye walker but he is too short for one.

The physio said that Isaac is showing signs of arthritis so he needs a blood test for that when we see Nicola next month.  I knew he was likely to get it earlier than normal because of his hypermobility but I didn't think it would be this early.  In the meantime I'm trying not to panic (easier said than done).

It's been a while

We've just been plodding along as usual, counting down the days until half term.  I phoned school transport and was told that Isaac is not disabled enough to qualify for free school transport but if I send them letters from Simon's employer (saying he is at work at school run time), my GP (saying that I can't walk 9 miles a day pushing Isaac in the wheelchair and carrying Malachi) and Isaac's paediatrician (saying that he can't walk to school) along with copies of the DLA award and blue badge then they would consider it.  I'm not sure if it's worth it to be honest.  But it's only a few letters and a bit of photocopying says the lady from the school transport office.  Yes, added to the other "only's" that I have to do whenever Isaac needs anything.  So far I have phoned the paediatrician who is on holiday and made an appointment to see the health visitor which we had to cancel because Isaac was poorly.

In the meantime we found out that breakfast club is only 70p per day so now Simon is taking Jeremiah to that every morning and I am taking Isaac on the days he is in and collecting both of them.  So now one of my children is always on time for school.  Isaac now has ear defenders for school to try and block out some of the noise.  He took them to school for the first time today so hopefully he will have a better morning than he has done.

Isaac was in the local paper this week.  A photographer went round to all the reception classes in Somerset and took a photo.  So here it is, 15 happy smiling children, and Isaac in a strop.

http://somerset.newsprints.co.uk/view/22486829/st_johns_wellington_recepti_jpg

And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment

http://somerset.newsprints.co.uk/view/16075019/stjohnsreceptionsgwk41_jpg

15th October marked the end of baby loss awareness week and as is tradition we lit Eleanor's candle at 7pm for the international wave of light.  I dithered about whether to light 2 candles this year but I couldn't find one or think of an idea to make one that felt right for Elisha so we just lit the one that we usually light.

Isaac finally told me why he didn't like school.  Apparantly it's too noisy so he is now the proud owner of some ear defenders.  So now he is happy although the teacher is having trouble getting him to take them off when she wants to talk to him.  And he is even more unwilling to play with the other children in his class.  According to him, Jeremiah is his best friend and he doesn't need anyone else.  Not sure what Jeremiah thinks about that!

Malachi is at that in between stage, more toddler than baby now and cruising round the furniture.  He has a cold so he is back on his inhaler again.  He has also learnt to take apart disposable nappies so he is back in cloth nappies for the forseeable future.  He doesn't really have the right shape for cloth nappies as he is very short and rather chubby so finding nappies that fit under his trousers is a challenge.  His 9-12 month trousers are a bit long anyway so we can't get away with moving up a size to accomodate his nappy.

out and about

After 2 days at home I decided to take the boys into wellington to get Malachi weighed, buy a few bits in ASDA, get some photos printed and hopefully run into some people we know from school, preschool etc while we were there.  Not literally run into, although with Jeremiah pushing the buggy it was fairly likely!

We got Malachi weighed and measured at the childrens centre (8.77kg, 73cm).  He'd lost a tiny bit of weight and his length had slowed down a bit but as he'd eaten quite a lot just before the last weigh in and hadn't this time I wasn't worried.  He is now following the 2nd centile for weight and is 2.5cm below the 0.4th centile for height.  Nicola and the dietician are still convinced that if he puts on loads of weight he will catch up in length but so far that hasn't happened.  But as he is no longer failure to thrive the various professionals aren't panicking about his weight so we will carry on with the small amount of infatrini he is on and keep weighing him every month.

While we were in the childrens centre the builders at the school next door set off the smoke alarm so we all had to troop outside to the park and wait to be let back in.  Isaac in particular wasn't impressed until the fire engine turned up!

On the walk back into town one of the front wheels of Isaac's wheelchair fell off going up a kerb and Jeremiah ran over a piece of glass and a thorn with the buggy which proved to much for the slime filled inner tubes.  I managed to get the wheelchair wheel back on.  It's the 2nd time it's happened so I knew what to do but I'll be phoning the engineers today to get them to come and have a look as it's not very safe and if the bolts fell down a drain when the wheel flys off another time we could end up stranded.  We were only a little way from the bike shop by this point so I pushed the buggy while Jeremiah pushed the wheelchair, trailing slime as we went.

So it was an eventful trip out but we did end up meeting 4 friends which was nice.  Getting out and about is hard with all 3 of them and the wheelchair etc but I'm glad we did it.  Internet shopping is all very well but I think we all needed a change of scene and to talk with different people.  We're off to the hospital on Tuesday which will be a good opportunity for Isaac to practice self propelling on the shiny floors.

busy days

Yesterday Isaac had his feet measured and he needs the next size up piedro boots.  I had a scary conversation with someone who's child has hypermobility about as severely as Isaac.  Her son dislocates his joints which Isaac doesn't and I thought he wouldn't do but she told me that her son wasn't dislocating at Isaac's age, he started at 5 years old.  There are times like this when I feel scared for his future.  Then today a lady came to the breastfeeding group with her 2nd baby who had been going when Isaac was tiny.  She asked how Isaac was, if he still had his feeding tube?  He has come a long way in his short life.

Isaac had his assessment by the lady from the PIM's team (Physical Impairment Medical I think) at preschool.  I stayed and watched.  There wasn't any difference physically between him and the youngest children and he walked up the steps to the slide which he doesn't normally do at home.  He went to sleep for 2 hours leaving me wondering how he will cope with a full day at school and if not how will I cope with walking into wellington and back 3 times a day.

Malachi was weighed today and had lost a tiny bit from last weigh in but gained from the last weigh in on those scales at that time of day.  I suggested that I increase Malachi's infatrini again but the community nurse was reluctant to suggest that without approval from a paed so I have increased the infatrini back to 2 bottles a day and I need to phone Nicola tomorrow to tell her.  We seem to have developed a pattern of Malachi gains weight, infatrini gets dropped/reduced, Malachi loses weight, infatrini increased over and over again.  This time I will keep him on the increased dose for longer.  For those who are interested Malachi now weighs 7.34kg which is 18lb 3oz if I remember rightly.

Update on us

Malachi had his appointment with Nicola on Tuesday.  We were a bit late due to 2 double decker buses coming along one after the other.  I'd already dragged Isaac, Malachi, the folded buggy, handbag and changing bag onto a double decker bus once that day so I decided to take the chance that Nicola was running late.  Malachi was weighed (7.4kg) and measured (67.9cm).  Nicola was running late but I didn't mind that as I know she doesn't rush people when they have questions.  Also there is so much for the children to do in the waiting room.

It looks like Malachi had lost that weight and reducing the infatrini was a bit premature.  But increasing the infatrini again seems to be helping which is good so no need to panic about his weight.  He is also being referred for more intensive physio.  No news on Isaac's blood results yet.

Jeremiah got a certificate this week which was awarded at the church.  We sat at the back near the aisle so we could get a good view of the children coming in.  Jeremiah waved as usual and Isaac waved at Jeremiah and a couple of the other children who he knows as well.  I don't know why but I always get a bit emotional when I see the children walking in crocodile fashion from the school to the church.  The Headmaster first, then Haslett class, with two of them carrying the school flag.  Jeremiah's class (Newnham) is always right at the end as they are the youngest.  I think I'll need to take tissues with me the first time I watch Isaac walk to the church with the rest of his class.  Hopefully he will make it without falling over.

School entry plan meeting

Isaac has his school entry plan meeting on 19th March.  It's getting close now, in a few months time my little boy will be starting school.  The SENCO asked me to drop his paediatrician's phone number in to the office when I had a minute and I had to admit that I knew the number by heart.  Although to be fair it's on a list of important phone numbers I keep attatched to the boiler so I see it every time I use the washing machine.  I've also had to fill in a form to get a new blue badge for him as his got lost.  They want to know how many times he fell over in the last year (how should I know, I didn't keep count) and how far he can walk unaided in steps or metres.  I tried counting steps but lost count when Isaac kept asking me why I was counting!  I'm going to ask Simon's Grandad how far the length of the car park is and see how far Isaac can get across it before he falls over.

I got Malachi weighed on Tuesday and either he has lost a lot of weight in the last 2 months without me noticing or the scales are wrong.  We are going to see Nicola next Tuesday so we'll see what the hospital scales say.  In the meantime I'm giving him as much infatrini as possible.

Oh tumbledryer I've missed you

My tumble dryer is fixed!  I've been catching up on the piles of washing that has been building up since the weather has been bad.  The man from medequip came to take away Isaac's highchair so we no longer have any special needs eqipment in the house.  Isaac proudly told the delivery man that he didn't need it anymore, so cute.

The highchair

Isaac waving goodbye to the highchair

The blood test on Monday was a disaster.  She tried 4 times but couldn't get it.  She got 1ml but that wasn't enough.  She asked me to go to the oncology department to get the rest as she thought they would be good at getting it as people who have cancer often have bad veins but by then I was bruised, the children were fed up and we were all soaking wet from the rain so I said I would go home and ring the oncology department.  It was a good thing I did that because the oncology nurse said I couldn't be seen there without a GP referral and even then probably not as I'm not an oncology patient.  So I rang the GP surgery and the receptionist was saying that the nurse there could have a go but I said no, I only wanted someone who was really good at taking blood to do it as I'd had 10 failed attempts already.  So the receptionist said she would get the GP to ring me the next morning.  The GP rang yesterday and she is going to talk to Nicola and ask her to persuade someone at the oncology department to do it.  I should hear from them by the end of the week.

Malachi in his new cardigan

Jeremiah with his special award cup

Jeremiah in the lego shop in Cardiff

Jeremiah and Malachi fell asleep holding hands

Back to the hospital

On Monday we went back to the hospital to see Nicola and the physio.  Jeremiah was off school with a cold and a bit of a temperature and Simon is on holiday from work this week so all 5 of us ended up going.  Nicola was running late so we had 40 mins in the waiting room (thank goodness the boys love it there because there are loads of toys.  Malachi was weighed and measured (7.3kg 67cm).  We saw the physio who said that he has made some progress but he has dropped off the physical development chart again.  She gave us some more exercises to do with Malachi.

We then saw Nicola who was really pleased with his progress and she said we could try weaning him off the drugs when he gets to 8kg.  She also sorted out the microarray test.  Isaac needed his done in paediatrics so they sent us down to CAU.  There was a long wait there so we got sent back down to peadiatric outpatients.  Simon took Isaac in to have his blood taken and I could hear him screaming from the waiting room.  I just hope they got all the blood they needed this time.  We had to go to the phlebotomy department at the other end of the hospital for ours and I didn't fancy carrying Malachi, the changing bag and my handbag all that way so Simon went to get the buggy from the car.  Simon had his blood taken no problem but after 2 goes and wiggling the needle around (ouch) they couldn't get mine so I have to go back today when the head phlebotomist is in as she used to do all my pregnancy blood tests.

Yesterday Malachi and I went to the breastfeeding group and the hv told us I couldn't bring Isaac from next week as they are changing it to non walking babies only.  I'm not impressed I have to say.  I'm going to ask the preschool if we can change Isaac's sessions so I can still go.

Yesterday afternoon Isaac's OT came round.  She said she couldn't take the highchair, we have to wait for medequip to come and get it.  She also said she couldn't discharge him without checking with her supervisor first.

That friday feeling

It's Friday and Simon is off work next week thank goodness.  We've had a busy week this week.  Tuesday we went to breastfeeding group.  Only 4 of us this week and one is going back to work on monday.  Then in the afternoon it was the time to chat group.  It was just Mel and I (again).  We decided to make sensory bottles next time for one of the physios who has recently had a baby. Wednesday was preschool and so was Thursday.  Today was my "day off" so I started blitzing the boys room.  I've also been tie dying some white cot sheets and some other bits ready for when Malachi moves from the moses basket into the cot.  I don't think the cot bedding will be dry in time for tonight but we should be putting away the moses basket at some point this weekend.

This afternoon Jeremiah was in a special assembly at school.  He was one of 2 children with a speaking part and he did really well, he spoke loudly and clearly.  Unfortunately Malachi was also speaking loudly and clearly lol so once Jeremiah had done his bit we left.

Next week Malachi has appointments with Nicola and his physio.  Isaac has an appointment with his occupational therapist (I'm hoping she will discharge him).  I have a parents forum meeting at the childrens centre so it's going to be another busy week.

Malachi's first tooth

Well as the title says, Malachi has a tooth.  Or to be more accurate, Malachi has a tiny white speck!  I've been trying to photograph those last gummy smiles before it comes through properly but he is keeping his mouth firmly shut whenever I get the camera out.  I did manage to catch Isaac and Malachi having snuggle time though.

They do this quite a lot but I've never managed to get a photo before.  All three of them get on really well mostly and Jeremiah and Isaac love giving Malachi cuddles and singing to him which is lovely.  We're having a quiet day today.  Getting on with the housework and playing with the little ones.  I've noticed that Isaac will play quietly for ages with Malachi when it's just the 2 of them at home but as soon as Jeremiah gets home he suddenly gets more lively and wants to join in with whatever Jeremiah is doing.

We still haven't had the forms for the chromasone testing yet.  I just want to get it over with now, preferably when Simon is off work so he can come for moral support.  I phoned Nicola yesterday and she is going to chase them up for me.

It's been a fairly quiet week this week, but then I think we've needed it.  Wellington Carnival tomorrow which should be fun.  There is always a big party atmosphere while we wait for it to start.  I wonder what Malachi will think of it.  He loves music but it can be a bit loud.  I think Isaac will appreciate it more this year now that he's a bit older.  We've got folding chairs this time so no more standing around.



Malachi - 7 months

Yesterday Malachi had an appointment with Nicola.  Weight 14lb 10oz, length 64cm all fine.  She said that if she was meeting him for the first time with no knowledge of our family history she wouldn't be concerned with his development as he is on the lower end of normal.  His tone is better than before.  She has increased his meds probably for the last time and she is hopeful that he won't need them for much longer when he is sitting on his own and eating more solid food.  The microarray test came back and shows that Malachi has some extra bits of chromasones which might mean something but might not.  Isaac had the test done in 2009 but after a long time of faffing about they decided there wasn't enough blood to do the test.

I talked to the nurse from genetics today and Simon and I need to have the microarray test done to see if we have the same abnormalities that Malachi has.  The speed of testing has increased over the last 2 years so the results should be back in about a month.  We then have to decide whether to have Jeremiah and Isaac tested or not.  We will see the genetics consultant in about 3 months.

Malachi - almost 7 months

Malachi will be 7 months old tomorrow.  He isn't sitting on his own yet but he is more stable in his bumbo these days.  He weighed in at 14lb 9oz this week.  Off to see Nicola (consultant paed) next week and phone appointment with genetics as well.  It feels like everything is coming together and I finally feel that these early days of panicking are over.  It took nearly 2 years to get to this point with Isaac so this is really good progress.

Not sure what we are going to do with genetics.  We are going to the appointment with an open mind and we'll just see what they suggest.  I don't know if it will benefit Isaac and Malachi to have a diagnosis or whether it is worth persuing or not.