What a chunk!!!

The health visitor has just been and weighed Noah.  She comes here to do him so that we don't have to explain his problems in a room full of other people.  At the baby clinic you can't guarantee which HV you'll get.  Though I don't think I would be bothered about it now.  She is very pleased with how he is doing.  She thinks we are doing all the right things with him.  I told her that I was worried that I didn't think I was doing enough.  I feel as though perhaps I need to do more.....but she thinks we're doing ok.  We always have a little chat about things before she weighs him so she knows how we are getting on with things.  She says that we are coping with everything a lot better than a lot of other people she meets.  I think because I don't feel the need or have the inclination to sugar coat things when I tell people about Noah.  If they talk to him when he is in the pram I just tell them....he is blind so he doesn't know you are talking to him....so just lightly touch his face or hand and he'll know.  Mick  doesn't agree with how I say it but to be honest I just don't have the energy to worry about everyone else's feelings as most of the time having to say that to someone is bloody hard on me.  Anyway Elaine our HV says a lot of people just won't admit it to other people that there is something wrong with their baby.  I really don't understand that.  I mean I would love to bury my head in the sand and deny there's a problem....but my job as his mummy is to do the best for him and make sure he gets all the help he needs and pretending he is 'normal' won't get him what he needs. 

Anyway the main reason for the visit was to weigh him.....and the chunky monkey is a whopping 20lbs 8.5 Oz's. That puts him above the 98th centile line.

Apple & Pears

We have a hit on the food front with fruit....well the two we've tried so far.  I tried the pear first and that went down very well.  After a few days I added some baby rice to it and Noah gobbled it down.  So today I decided to try apple.  And he seemed to love that more than the pear.  I decided to make up a fair bit and freeze it.  First I gently simmered the fruit till it was soft.  Then with my hand blender I just pureed it.  I stuck it in some ice cube trays and froze it.  When it was frozen I put it into tubs that I've labelled.  I used to do that with Alex and he used to love apple and pear together.  In a few days I'll try some veg.  At the moment he's just having one ice cube size block a day.....perhaps a little bit more if its mixed with baby rice.

I was talking to my niece in law about weaning the other day and she mentioned that with her youngest she did baby led weaning.  Having read up on it I did think that a blind, lactose intolerant baby probably wasn't going to do to well with that.

I remember with the others when they were weaning we used to have to hide to eat naughty things so not to feel guilty about it.  I guess if you try and look for the positives in this then at least with Noah we don't have to do that.  Mind you at the moment he seems quite happy to sit and chew on his hand....fingers...thumb.....bib....toys.....anything that he can get into his mouth including our fingers.

Emotions again

I thought I was getting a grip on my emotions.  I thought coming to terms with what was happening would lessen it all.  I know Tuesday was incredibly hard but I really did think I had coped.  On Wednesday Noah and I went to a new Asda that's opened in town.  As it was just the 2 of us I had the basket resting on the pram.  He was soundo.  I'd purposefully gone out after his 11.30 feed.  Halfway round the shop I just happened to glance at him and he was still soundo and he looked just so content and relaxed.  And I felt like I could just burst out crying there and then in the middle of the shop.  I felt quite wretched and almost panicky.  I didn't cry I just gave myself a mental shakedown and carried on with the shopping.  When I think about it I don't think I have really cried about this much at all.  Perhaps when we get a true diagnosis I'll be able to. 

Long legs

My mum brought Noah some pj's a part of his Christmas present.  She got him 3-6 months because by Christmas he was just over 2 months. Due to the vast amount of babygro's he has he hasn't worn them recently.  I put them on his last night.  He's 4 months now and they are too short for him.  He sleeps in a baby grobag so the length doesn't really matter.  He has so  many clothes that he has hardly worn.  He took forever to grow big enough to look okay in 0-3 month clothes and then all of a sudden he is huge.  He seemed to have quickly, very quickly outgrown 3-6 months.  Though in some 6-9 clothes he is just to big already.  Looks like we'll be buying 9-12 month soon.

More doctors

On Thursday mum and I took Noah to see the community paediatrician.  The health visitor had refereed us in an attempt to get the referral we needed to allow the teacher specialising in visually impaired children to visit.

The lovely lady doc (who's name escapes me right now) did a full developmental check on Noah.  In the things that rely on vision to help them develop he is obviously very behind.  But the fantastic news is that the things that don't require vision for he is spot on or even ahead.  She was impressed with his strength and his desire to sit up and to stand.  She is not worried about his weight as she thinks once he does become mobile he will lose some of it.  I also told her that I was trying him with tiny amounts of food and she was okay with that.  He hates baby rice and to be honest I don't blame him as it resembles wallpaper paste and I don't imagine that it tastes a whole lot better.  but I cooked him some pear and pureed it and he is enjoying that.  But the best part was that she filled in the referral form.  So hopefully in the not to distant future we should get some help.  I told the doc I felt as though I didn't know what I was doing.  And she told me I did and that I was doing good.  It was  good to hear as I think every day I worry that I am doing things wrong and that it will delay Noah in someway.

MRI

On Tuesday Noah had his MRI.  I don't think either Mick or I got much sleep Monday night for worrying.  On Tuesday morning Mick got Noah up as normal.  As he was being sedated he wasn't allowed any milk, but Mick was allowed to offer him water up until 7.30 am.  Judging by the look on his face he wasn't impressed.  We did have a fair bit of moaning about this but very little crying.  We got to the hospital with plenty of time.  He had to have a set of obs done and we found out he was now over 9kgs.  I still cant believe he has gone from one extreme to the other with his weight.  Then we were asked to take him down to the treatment room for his canula (in case they needed to use the contrast dye) and blood tests.  I had to put him on one of those bench bed type things that are covered with a roll of paper.  It took about 10 minutes to get all the blood needed as they don't syringe it out like they do with adults....they have to let it drip out of the canula.  By the time we were done Noah had screamed for the whole time and the paper was soaked in his sweat.  They asked us if he had a dummy.  But by that time there was no way a dummy would have helped.  All he wanted to was to be hugged. 

Straight after they then had to give him the sedation powder.  they mixed it with blackcurrant juice to make it more palatable.  They syringed it in to his mouth and he was a little monkey.  Somehow he managed to keep it in his mouth, whilst still moaning and then spit it out.  So it took a fair while to get it in.  Eventually it was all in but he decided to try and fight it.  Luckily I know how to hold him so that he relaxes and I just stroked him and talked quietly till he went off.

They then walked us down to the MRI suite.  Noah was in a huge bed and looked so small just covered with a little lilac blanket.  The whole time his obs were monitored by a machine.  The nurse placed him on the slidey table part of the machine and then they put tiny little ear plugs in and padded out round his head with soft grey pads.  Then a cage type thing went over his head.  Now for me that was the worst point.  I don't quite know why.  The scan took about 20 minutes and then back to the children's wing we went.  They were hoping that he'd wake up quite quickly but of course what we want and what we get are rarely the same thing.  He slept for 3 hrs.  When he woke up he had a bottle of milk...and then the bad news he had to have another blood test.  Back to the treatment room we go.  But this time Mick had to hold him down and emotionally I was wiped out.  Luckily this time it only took a few minutes and we were told as he'd also done them a wee sample we could go home.

So about 3.30 we finally left.  And as the whole time we'd been there we'd had nothing to eat or drink we headed straight for MacDonald's.  I dread to think how many syns we ate as we really did pig out.  Noah was pretty much out of it for the rest of the day, only waking for a few feeds.  But by Wednesday other than the bruises on his hands you wouldn't know as he was back to his happy, gorgeous little self.

Hopefully we'll get the results some time next week.

Facebook

I must admit I am quite addicted to Face book.  I was even posting just before I had Noah.  I know some people hate it but I have found it to be invaluable in bringing together our rather fractured family.  I don't mean my direct family, but our extended one.  My mum is one of seven.  Only one of her brothers live in Harwich.  One is in Kent.  One is in Scotland.  One in Germany and two in Australia.  As well as the aunts and uncles there are rather a lot of cousins.  Some of these cousins I have never met and some I haven't seen since we were tiny.  But we now talk.  Sometimes its just comments on status updates or photos and sometimes its a proper chat using the rather unreliable chat facility.

My three girls are on it and probably talk to relatives far more than I do.  One time we were out for a drive and Charlee said....a strange man started talking to me on face book.  As you can imagine that would strike fear into the heart of any parent.  Strange man we replied....yes he was in an airport and said he would see me soon.  More worrying.....then I had a thought.....was his last name P......  Yes she replied.  It was one of my uncles from Australia.  They were flying over to visit and he was on the 'net at the airport and she happened to be online at the same time.

I do tend to post a huge amount of photos of Noah on there.  I know some people don't like to put up pics of their children but I personally think its nice for our family to see a snapshot into our lives.  And with so many people rooting for Noah its nice for them to see how well he is doing.  He had an awful lot of people praying for him and asking after him when he was in SCBU and not gaining weight.

Talking of Noah we finally have a date for his MRI.  This Tuesday.  Luckily Mick was already off work that day.  He isn't allowed to have milk after 2.30 am...then no water after 7.30 am....we have to be at the hospital at 9.30 am and he is booked to have his MRI at 11.30.  He is not going to be a happy baby.  Good job he has plenty of body weight to fall back on.  Though he will only be missing one feed.  I just hope and prey that we'll get some answers quickly.