Goodbye neonatal, hello other hospitals :/

[AP]

Feels like jumping from the frying pan into the fire.

So Alex will be discharged from neonatal come October. But after this we have different appointments everywhere and to be honest I haven't a clue what to expect.

We have help coming for her development,
speech,
her eyes,
and the GI clinic, each at different hospitals that doesn't deal with just preemies.

Can anyone shed a light on what to expect at any of these appointments? If you have an older Preemie was their history of being a preemie taken into consideration?

 

[toothfairyx]

Will they still discharge her with all that going on?

 

[Foogirl]

No idea about speech...... Seriously though, my SIL is a pediatric speech therapist so if you have any specific concerns, let me know.

Abby's eye appointments have been disappointingly pointless tbh. Pretty much they just tell us the same things every time. And we spend two hours there for them to do it. It starts with the opthalmologist who seems to ignore the fact Abby has no interest in her boring, crappy pictures but will sit and point out things on the wall miles behind her. She even said "perhaps Abby doesn't know these words, maybe you can practice" ...(dog, cat, horse etc.....eh yeah, she knows those ones ) Then she would get drops and some other woman who did some more sciency stuff would see her and finally she sees the eye consultant. She has another appointment in a couple of weeks, I'll let you know if there is any difference!

 

[Marleysgirl]

Andrew is being discharged by the Neonatal Paediatrician after this Thursday's appointment, he then goes under the care of the Community Paediatrician who we have met and who is very clued up about preemies.

He has already transferred to community dietitian, speech & language, physio (the latter in theory as they havent bothered seeing him yet). The difference seems to be that we have to chase up on repeat appointments, they don't seem to have diaries and don't make them as a matter of course.

He is also under separate hospitals (within the same trust) for eye checks and for audiology. Neither of those specialists have particular experience with preemies but, to be honest, that doesn't really make any difference. Both are experienced with children with various special needs, his small size is the only differing factor.

 

[Foogirl]

The difference seems to be that we have to chase up on repeat appointments, they don't seem to have diaries and don't make them as a matter of course.

ooh, yeah - this too.

We constantly have to remind the eye doctors they said they would see Abby in a couple of months.

Physio are ok though as they come to the house and we make the appointments before the physio leaves.

 

[AP]

I think I am just scared. The one place where I thought would be there for us(neonatal) have been piss poor since discharge from the unit. If they have had no understanding if our issues, then what hope do I have that other places will?

I'm glad I have you lot, honestly. I wish someone would tell us what to expect, we go into appointments completely blind as to what goes on.

Foo, I don't get how speech therapy works when she can't say anything, only babble? I mean it must work? But how?

Marleysgirl your last point puts it all into perspective for me, thank you xxx

 

[Scottiemum]

Hi SB22, my daughter Cara has just started speech therapy and also attends OT and PT. With the speech therapy, they initally a few months back did an assessment which was basically asking me lots of questions, observing her, in two main areas, her understanding and what is coming out of her mouth. They asked a little bit about ho she was feeding. So with speech therapy they are concerned with how the baby communicates overall even if they are just babbling. e.g. do they point to something, say ooh, lean towards something they want. Another example is if you say something like "where is Daddy", do they look about for Daddy? "where is the ball", do they look for the ball etc. The speech therapist also told us to talk in short sentences as a baby can only pick up a couple of words at a time so if your sentance is long they are not picking up the main words. e.g. Shall we get you ready for bed? instead say "bed?"

At Caras last appointment they placed out three toys and just let her go to the one she wanted, then they wait for her to play and just introduce the communication that way, repeating what she does like "open", "ball", "cat" etc etc. They say you should wait for the baby to communicate and take their lead...very hard to do! and repeat what they are trying to say so they feel you understand them. If we say "ready steady"....Cara says "Go" but we need to give her the opportunity to reposnd without jumping in first which is the natural reaction.

They also do a bit of singing which she loves!! I kind of think Cara is doing ok but they said she had a mild delay, I'm not too worried though. Your daughter will probably love the sessions as its all play really.

Hope thats gives you an idea before you go. Best of luck, let us know how she gets on.

 

[AP]

Thanks Scottiemum. U said Cara had an IVH too didn't you? That brings me some hope and I really appreciate the info you've gave us there, I'll read it to hubby now lol xxxx

 

[Scottiemum]

No problem at all, yes she had a grade IV too! She has recently been diagnosed with cp...devastating but we knew it was on the cards, long journey ahead! But she is bright, clever happy wee girl!!! I'm on facebook more if you want to keep in touch

https://www.facebook.com/laura.leathem

Foosgirl - did your SIL give you any tips? Abby is such an advanced talker, love her videos...Laura XXX

 

[xxClaire_24xx]

we are constantly at the hospital with Ellie but its either Crosshouse or Yorkhill, when you were discharged did they say that the LO had any health problems to be kept an eye on xx

 

[AP]

Yes, she has several issues, a Grade 4 brain bleed, some polycephalic cyst at birth (?) and ROP. The first two probably are the culprits for several issues we have now :s and I hope they take this into account.

Freaking out and absolutely desperate for the GI appointment. Our sick kids in Edinburgh have told us there is no more they can do and I just need this appointment

 

[xxClaire_24xx]

ah my friends baby who was prem also had a polycephalic cyst its all gone but they said its possible that she would have started carryting twins and then it urned into one baby and therefore left the cyst xx

 

[AP]

now I haven't even been explained about this cyst

 

[25weeker]

Holly has a cyst which was caused by her bleed going out of the ventriculars into the brain tissue causing that part of the brain to die. In it's place is fluid which is what they class as a cyst.

Thinks that's how it was explained to me but it was very complicated to fully understand.

 

[Foogirl]

Phone and throw an adult tantrum to try and get a cancellation appointment for the GI. It is unacceptable that you have to wait for it.

We made a LOT of noise about Abby's appointment with the neurologist and eventually they squeezed us in to a clinic.

 

[AP]

Holly has a cyst which was caused by her bleed going out of the ventriculars into the brain tissue causing that part of the brain to die. In it's place is fluid which is what they class as a cyst.

Thinks that's how it was explained to me but it was very complicated to fully understand.

That makes complete sense! And I understand it now. It was never something I took much notice of and I thought it was under the IVH heading but recently I've seen it pointed out on her letters.

 

[AP]

Phone and throw an adult tantrum to try and get a cancellation appointment for the GI. It is unacceptable that you have to wait for it.

We made a LOT of noise about Abby's appointment with the neurologist and eventually they squeezed us in to a clinic.

It is disgusting how they have left us begging tbh! I was thinking about taking a wee leaf out your book and trying privately? I really am that desperate.

 

[Foogirl]

Phone and throw an adult tantrum to try and get a cancellation appointment for the GI. It is unacceptable that you have to wait for it.

We made a LOT of noise about Abby's appointment with the neurologist and eventually they squeezed us in to a clinic.

It is disgusting how they have left us begging tbh! I was thinking about taking a wee leaf out your book and trying privately? I really am that desperate.

If you can find one and find the money, I'd go for it, even just to get the ball rolling. But keep calling to get a quicker appointment.