I remember being old by one of the doctors that we would get loads of support, but we have nothing!

Our HV comes every 3 weeks or so but even she wants to reduce this. She ignores her prematurity and wont take into account any Bliss guidelines, and treats Alex like a 'normal' baby.

We were told we would get support with physio yet we have had nothing.

A baby who left a week or so after Alex with the same age and problems as Alex gets a health vistor weekly, with weekly weigh ins, and a physio, who will be there til the LO is 5.

I'm sitting here stunned at the lack of developmental care we are getting in comparison with another baby only a day older.

next to none also hun, see HV forthnightly but due to my PND not Matthew! She thinks monthly weights is adequate. He sees paed every few months but like yourself no extra support from anywhere else. Matthew was born at 33+4 so hung in a good bit longer than Alex managed not sure if that makes a great diff or not but do agree you should be getting more support xx

i mean the reason why we were recommended a physio was because of her risk of cerebal palsy.

I had a community nurse formthe neonatal unit visit me a few times, but that was mainly to wean Molly off oxygen. Nothing since then apart from consulatant appointemnts every 6 months or so.

At the moment (6 weeks post-discharge) we're still under the care of the NICU Outreach Midwives, who visit weekly and weigh Andrew then. I'm told this level of care should stop now he's over 2.5kg, but they're not going to sign him off until after the festive break so that I have somewhere good to call on in case of emergency over the shut-down.

I should have heard from the Health Visitor by now, they're surprised I haven't. Not sure how often she'll visit, but I'm only 2 streets away from her clinic, so I'll be taking Andrew to the weekly drop-in for regular weighing anyway (because I'm curious!)

We're having monthly visits to the Physio department at the moment, think this will go down to every three months in the New Year as they are very satisfied with his progress based on corrected age.

We have our first Neonatal Paediatrician appointment at the start of January, I'm annoyed it's taken that long to happen, and I don't know how often we'll see her from then on.

If I were you, I'd be phoning the HV & Physio teams and asking for frequent visits, make a nuisance of yourself!

I would bug them too.

We have an occupational therapist and physio who come to basically play with Lakai, they haven't had to do anything. But it's nice to have them come and confirm he is actually doing well.

We also have had 2 follow up appointments with the Neonatal Follow Up Clinic at the hospital where he was born, where they basically test his development.

We see our paed/dr monthly as well.

And have various other doctors and such that we see.

We have it very good here though. I know in many countries things are very different and that's tough.

We also don't pay for any of Lakai's medical supplies or medications because he is on a program that pays for it all. So anything he will need until he is 18 to aid his development we are provided.

Absolutely no support what so ever, I likened it to being abandoned...when in NICU you get so much support and then you get discharged with a bliss pack and sent on your way.
Strikes me as odd.
We waited 8 weeks until we saw Emily's paed, haven't seen a physio yet.

I just got on with it, ignored HV advice and just rang Emily's consultant or NICU unit for advice, they are always willing to help. Oh and used this site for support also.

I'd chase them up. Do you have a copy of her discharge summary? If you don't, your GP should. That should show what kind of follow-up they expect Alex to have. If you were thinking the physio should've started by now, get in touch with the secretary of one of the neonatal consultants and ask if a referral has been done to physio, as you understood that's what would happen. (It's normally the Child Development Centre or something similar within the PCT that deals with developmental care.) They can pull Alex's notes and see if anything has been done or needs doing. The secretary should be able to get the consultant to ring you back as well. Also, this would be a good time to ask that you be copied into all correspondence regarding any clinics/referrals.

We had the NNICU outreach team come out and do her checks for a couple of weeks. They did ask if we wanted them to come for longer, but I felt there was no need. They were only a phone call away if we needed them. HV came once a week, then once a fornight then once a month until a couple of months ago. We don't see her now, but again, can call if we need to. She didn't really know much about premature babies and neither does our GP.

We have had two follow up appointments with one of the NNCIU consultants. At the first one he wasn't paying attention and Abby cracked her head on the scales. She then screamed constantly until about 6pm when we called NHS24 and took her to the hospital. The last check up was a bit better though, she was seen by the physiotherapist. However, we asked the consultant about the cysts in her brain and he looke blank, said there was nothing in her notes and even queried whether we had been told she had them, he said it must have been one of the nurses who mentioned it. I mean, we saw them on the fekking brain scan ourselves!!

We see a dietitian for Abby too. I thought initally that the lack of care was shocking, but TBH, I'm not sure we actually needed anything else.


I thought Canada had free universal healthcare?

A lot of the medical supplies you need are NOT covered. Like his pump wouldnt have been covered if we didnt get on to the program we are on...and thats like $1500! And a monthly cost for supplies are like $500, every month. And the only reason we got in is because they played up his brain bleed and how his outcome was uncertain. If we were to have to apply now we would not get it because its clear he has no issues from it but when we left the hospital they applied for us and we were approved because we didnt know how well or poorly he would develop.

So if say another family with a baby who was born with only swallowing issues, they would NOT qualify for funding.