update p2 What kind of care did your preemie get....

[AP]

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.

 

[bumpsmum]

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

 

[AP]

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

 

[embojet]

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.

 

[Marleysgirl]

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!

 

[nkbapbt]

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.

 

[premmiemum123]

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.

 

[MandaAnda]

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.

 

[Foogirl]

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.

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.

I thought Canada had free universal healthcare?

 

[nkbapbt]

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.

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.

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.

 

[Foogirl]

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.

Wow, I didn't know that. So do you still need to carry some kind of medical insurance? Are there many situations where thinks like this might happen?

For all people complain about our NHS, I am so glad we have it. I've never really used it much, except for general check ups and having my wisdom teeth out, but ye ghads we got our money's worth with Abby.

I just can't imagine having to go through the NNICU experience whilst worrying about the bill at the end of it.

 

[nkbapbt]

There are a lot of situation where it happens. It usually happen to middle class families who make over a certain amount. You don't pay for your NICU stay but what comes after if your baby still needs certain medical equipment/supplies if your insurance does not cover it you have too. We dont have special insurance, because Im a stay at home mom and my hubby is self employed. Even still most insurance won't cover everything.

Basically they made it to seem like Lakai would have how do I put this...disabilities or issues when he was older or even now. If he had say a Grade II bleed they would not have approved us, even if he did have a g-tube. It was the fact he had a Grade IV that got us in and even that was barely enough.

Its sad really.

The program is great though and it doesnt depend on your income, anyone of any "class" can apply and be approved. Its a matter of your childs needs and not if you can meet them yourself or not.

We don't pay for things like OT's and such. That's all covered. And if we wanted too we could claim disability for Lakai and get payments to cover his care, but to me that seems like cheating because he is not disabled even if he has certain things that qualify him like his bleed and his g-tube, and the fact his basic care requires more then 2-3 hours a day more than an "average" baby.

I always feel terribly sorry for people in the USA who sometimes DO have to pay for their NICU stays...Ive read horrible stories about families losing their homes, and so on. I cannot imagine that.

 

[bumpsmum]

thank god for NHS, we would never have managed if we had to pay!

 

[premmiemum123]

Praise be the NHS! I don't know what we would have done if we had to pay for it. Added stress.

 

[AP]

here here!

 

[Logiebear]

We had the scbu midwives/nurses visit us at home for 7 weeks. It was horrible as they put so much pressure on us. Hannah has weight gain issues and they were awful to us. Sometimes it is better to be left alone!!

 

[AP]

well, we went to the hospital check up to be told that alexs movement gives no cause for concern so wont be referred to a physio.

this will be re-evaluated every three months!

I was also advised to start weaning, get it up ye, health visitor!

 

[MandaAnda]

Well done, Alex!

 

[Foogirl]

well, we went to the hospital check up to be told that alexs movement gives no cause for concern so wont be referred to a physio.

this will be re-evaluated every three months!

I was also advised to start weaning, get it up ye, health visitor!

Excellent news.

And be sure to mention it to your health visitor.

 

[AP]

well, we went to the hospital check up to be told that alexs movement gives no cause for concern so wont be referred to a physio.

this will be re-evaluated every three months!

I was also advised to start weaning, get it up ye, health visitor!

Excellent news.

And be sure to mention it to your health visitor.

Sure will, it was only on Tuesday I tried to discuss weaning again and she really was adamant I shouldnt even be thinking about weaning her yet!