MSE Parents Club Part 5

Krystaltips

Sami, while your here (although I'll probably be in bed by the time you reply) Did you get a new phoneline thingy from the shop and scan people? they just sent me through exactly the same wire that doesn't work....

elle_gee

money_maker wrote: »

flayling arms
clenched fists
right hand side of neck
baby toe curled in
the middle bit of his nosegot bent when the CPAP was in, as it was too tight, and I was told it would correct itself after a while, but it is still bent
doesnt turn or react to sounds unless they are right beside him
cross eyes ( the muscle at the side can be too tight - my sister had to get her eyeball taken out and turned !!)
complete refusal for tummy time

Thats about it ..... the only one the HV mentioned was his right hand side of his neck, as he really doesnt use it enough, he does turn his head both ways, just not as much on that side. It could be nothing, but she said to bring that one up.

Arms - you've seen the vid of Rhys with his rattles on (you "like" it ).. That's what he's always like, the consultant saw that and he was impressed by it, not worried.
Fists - sounds normal
Toe - mine curls in, so does Rhys' (don't think anyone's ever looked at him that closely!)
React to sounds - I was told (not prompted by anything Rhys did, just in general) that babies don't always react, especially if there's something more interesting going on than, say, the door slamming in the background
Tummy time - lots of people say (or said earlier to Skinty) that their LOs don't like tummy time. They used to do it with Rhys whilst he was hooked up to all the monitors because he was prem so maybe that's why he's more used to it

Sorry, all that's meant to sound reassuring, not patronising xxx

ETA: Rhys' CPAP mask was always too loose and kept falling off so I don't think it had any lasting effect.. will go peer up his nose later!

Sami_Bee

Krystal they sent me what they called a broad band filter and it worked straight away. The guy said it's a problem that comes up often with virgin (but the script monkeys don,t get coz it's not in the script!)

money_maker_3

Doesnt sound patronising at all huni
Its nice to have you to talk to about this stuff though as you are going through pediatritians (why can I not spell that word ??????) at the same time !! Tias DS2 has cerable palsy, so she is great too as that is the main thing they are worried about for Dylan.

I thought of all the above that you posted, but I have been told to note down everything as we see him on a daily basis and the ped will only see him for 30 mins, so it is up to me to point things out !!

Krystaltips

Thanks Sami, I'll give them a ring tomorrow and ask for one... Hubby spoke to them and I told him to tell them we were on cable... But there you go...

Just doing our dream feed... I've noticed she doesn't feed that much until I feel letdown and then she guzzles away...

elle_gee

Oh, have just remembered something I didn't tell everyone (cos I know everyone really wants to know about my son's insides! ).. I saw the consultant we were meant to see last Monday whilst we were in for the blood test yesterday. She's going to write to us eventually with a full report, but from what she's seen of the kidney scan, the cysts in his kidneys have gone (:j) and they're "just a bit small".. but then again, everything about Rhys is small - he'd look well odd if he had a normal six week old's kidneys inside him, wouldn't he?! :rolleyes: Sounded more positive.. Still waiting for the blood results tho - will phone the Unit tomorrow

money_maker_3

Thats great news elle He is doing so well and I remember all to clearly the time you were talking to the specialists about resus !

elle_gee

Krystaltips wrote: »

.. Just doing our dream feed... I've noticed she doesn't feed that much until I feel letdown and then she guzzles away...

Rhys does that, I think. Practically have to clamp his head there whilst waiting for the letdown then he's fine otherwise he'd have bounced off and found somewhere else random to latch on to :rolleyes: He's been unsettled all night so don't know if I dare try lifting him up whilst he's sleeping right now!

elle_gee

money_maker wrote: »

Thats great news elle He is doing so well and I remember all to clearly the time you were talking to the specialists about resus !

Mmmm.. Day 6 when he had to go back on the ventilator.. Dark days

I'm counting down to when I can say he's spent more of his life at home than in hospital.. we left on 8wks 2days so another ten days ish to go.

15 weeks old today

money_maker_3

we never had any problems with resus, but day 6 was when Dylan had to go back on the ventilator after having nearly 2 full days off it I remember it bso clearly as I had left at about 4pm and he was doing fine, on 45% O2, and phoned to check up on him before bed at 9pm and he had taken a turn for the worse about an hour before that. Cryed my heart out all night as I couldnt get up to him till the next morning
Glad that is all over and done with, and even though he was only there for 13 days, it was the longest 2 weeks of my life. I try not to think about it, but its hard not to remember it all too vividly