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Glad you got the jabs split.
I got a bobike seat that goes on front of bike. It's much smaller than others we saw & I really like having baby in front as we can communicate better.

Things here going really well. DD'S weight, height & development  pretty much where would have been had she been born at term so paedatrician really pleased (as am I!!!) DD really taken to food & thankfully that stays down much better than her milk feeds.

Hope everyone else moving forwards & enjoying seeing these little ones progress in ways that you'd not thought possible xxx
 
Pleased you have the jabs sorted out for Ivy. 
I can't imagine what mine wouid do in a bike seat.  They can't sit in a high chair or shopping trolly without squabbling and climbing out.

Neither of them can walk which I'm finding so frustrating when everyone over kid I see their age can walk. Chunk is becoming a right Chunk since his surgery probably because he's not having to use so many calories to work to breathe yet he's eating the same.  Loves his food he does.  Titch is still messing around particularly with warm food.  He tends to spit out anything which is warm.  Unfortunately Chunk then copies and thinks it's funny.  I had to abandon teatime last night.  I was so annoyed with the pair of them and it was hard to no let them know so that they play to that.  Titch ended up with a tube feed and Chunk nothing but his milk before bed.  Both were scrounging my homemade curry later.  Chunk wasn't impressed with when I gave him some I didn't give Titch any tho because he's very sensitive and wouid then refuse to try anything of mine again.  I find I'm forever having to be one step ahead of them have otherwise they can be quite 'manipulative'.  I don't think it's intentional it's just they soon make connections I'd never even thought of.  If we do x mummy does y.  The connection I want from last night's teatime is spit food out and meal is stopped. Does anyone else have kids who are funny with warm food?  To me it's not too hot it's just warm and Titch pulls a right face at first mouthful.  Holds it in his mouth with mouth open then pushes it out with his tongue.  Often will then be Ok.  Last night he didn't want to know after first mouthful of minced beef and sweet-potato casserole.  I know he's becoming more independent wanting often to feed himself amd he's just not got the spoon skills.  I try giving him a spoon too and now that's not working any more.  I don't want to get into the routine of a tube feed if he doesn't eat because I predict eventually he'll stop eating again.
TCCx
 
Hiya TCC

Just wondered where you're at with referral process for the boys for physio & OT? I'm sure you're well on the case but as you'll know the boys are now considered extremely delayed and it will impact everything regarding self help skills, mainstream school, toileting, feeding etc if early intervention not started prior to 2. Hopefully not too lengthy waits in your area but give them a gee up just in case x
 
oh yeah forgot any speech at all yet? Mine have virtually none and it's looking like their ivh brain bleeds have caused more problems than previously thought... sigh.
 
Hi Blondie
They are under physiotherapy.  Fine motor skills seem fine so no OT as yet.
They are both trying to say things.  Titch was trying to repeat after me the colours of the toys he was playing with.  They know where their nose is.  In fact Chunk can be sitting across the other side of the room and I'll be saying where's your nose to his brother and Chunk is proudly pointing to his.  Can't seem to get other body parts yet.
Sorry to hear the IVH has caused more problems than first thought.  That's the nature of IVH they are indeed unpredictable results.  Titch had subependymal bleed which is not supposed to cause a problem but I do wonder with his swallowing difficulties. The unknown journey ahead is rather scary but on the otherhand there is little I can do.  What's done is done and I'll work with what the boys have.  I do think most of their delay is as a result of being in hospital for months on end in the first year.  Titch stuck in cot in hospital and me visiting meaning Chunk strapped in pushchair on in cot with brother can't have been very good for development.
TCCx
 
TTC.. I know what you mean about these babies being one step ahead, I also find my girl (good feeder) sometimes copies my boy (poor feeder) so I have to feed them separately otherwise both feed poorly and I end up getting frustrated.

Blondie, sorry to hear that IVH may have  caused more problems than previously thought.  Apparently speech is delayed with twins because they pick up speech from us and we normally speak to both together whereas with single babies it is more one to one so they can look at the lips moving..just something I read on Google.

Ivyf, glad the jabs went well.

Fififi, good to hear your little one is doing well.. Brilliant that she had caught up so quickly.

For us, weaning has improved a lot, boy is still difficult but taking a little bit. Now need to work on reducing milk and increasing food.
 
Tcc you're all linked in with services as it's a long road indeed.... I feel same what's done is done and I'm determined to enjoy it regardless, I'm lucky the boys enjoy outdoors so much as trapped in would be a nightmare and they are so much easier now than 6 months ago, we have lovely beaches close by and they won't let me pass without stopping  :-X they should have close to 1000 words by now so I've stopped caring and just hum my way thru speech therapy these days  ::) gotta laugh or you'd go insane, do give yourself a break and also them as they are only babies still and doing what all of them do when it comes to food, have fun with them as these years are so precious, hopefully they won't be chucking food at 20  ^roflmao^
 
FF the copying and competitiveness is really surprising me between twins.  If I pick one up the other scream to be picked up.  They don't sit still for 5 seconds if I do sit them on my knee put them back on the floor and they want to be back on my knee.  One brings a book to me start to read it to him and the other wants to pull it away.  Build a tower of blocks with one and the other comes from across the room to destroy it.  Take some food that one isn't eating and put it on the other's tray and the one who wasn't eating it and doesn't really want it goes mad because the other one has now got what he doesn't want!  Arrgh it's driving me nuts.  You have all this to come FF and it's good weaning is progressing generally well.

Blondie you are having a tough time of it at the moment.  For me it's fear of the unknown future for my boys which makes it hard.  I'm sure all us premmie mums have this fear to some extent.  Must be such a de-stress to have the beach close by. 

Does anyone else have some updates?  Love hearing about how everyone is getting along.
TCCx
 
Hi everyone!

I'm currently sat in the back of the car squashed between a 2 and a 3 year old, I am not comfy but it keeps them calmer! Only 7 hours to go 😱

Nice to hear how everyone is getting on. Sorry to hear of the tough times some of you are facing. The fear of the unknown and that limbo land is always the worst place to be I find. Even when you get bad news I think it can be easier to deal with as at least you know what you are facing and start planning for it.

We have the growth hormone testing next month, so we will see if that throws anything up. I think he's had that many tests now that I'm totally at a what will be will be stage.

Love to all xxx
 
Hello ladies,

I just wondered whether any of you have any knowledge/experience of microcephaly. My DD is now 3y 5m and is growing nicely along her curve for height and weight but her head isn't growing at all. It is exactly the same size at when it was measured last October. There have been concerns about this previously and she had an MRI this time last year which showed 'global cerebral insult' due to prematurity. They saw scarring and lesions on her brain. We saw the paediatrician yesterday who feels the scarring in her brain is preventing it from growing as it should. Plus she said she is now at higher risk of developing epilepsy. Am slightly concerned although she is slowly catching up and has recently started talking.

Thanks xx
 
Hi Surfer
These little ones do continue to worry us.  Microcephaly is a descriptive term which is basically medical jargon for small head.  It's a red flag for paediatricians who then look to see if there is a cause such as a syndrome or physical cause which in your daughter's case would be the damage she suffered due to her prematurity.  Essentially it means her brain volume, as a result the global cerebral Insult", is a little reduced so therefore her head is smaller as generally the head grows as the brain grows.  Head measurements are also not very accurate depending on who does them. 

I know she had NEC but were you ever told she had a bleed in the brain?  It's very common in premmies and the outcome can't be predicted as in some with big bleeds develop really well and others with small bleeds do less well than predicted.  Any child with damage from a bleed has a higher risk of epilepsy and even children with no history of bleed can develop epilepsy.  The main thing is your little girl is progressing with meeting her milestones so she has the potential to continue this development.  Head size isn't everything it's what's she's doing that's important. 
She's a remarkable little girl
TCCx
 
Thanks TCC.

All of her head scans in NICU were clear but we were told after the MRI that they could see evidence of small bleeds that hadn't been picked up on ultrasound. The report also said she has reduced white matter volume although the ventricles are of a normal size (I understand this to be a positive!) She had the MRI to rule out metabolic causes for microcephaly but her head hasn't grown in nearly a year now.
She is coming on well and is talking (a fairly recent development) although has poor vision in her left eye due to rop and possible cortical visual impairment. I also wondered if the brain injury could be impacting on her vision.

I guess it's a wait and see scenario. You are so right - these little ones know how to keep us on our toes!

Thanks for taking the time to reply. I hope your boys are doing well xx
 
You're welcome.  I don't think anyone knows the future for our little ones.  The USS are a bit ambiguous unless it's an obvious bleed.  The other cause of damage.in little ones who have had a stormy time before and after birth , besides bleeds, is lack of blood or lack of oxygen this sort of damage isn't always obvious immediately particularly on USS and only later can be seen on MRI.  it's possible the.vision part of her brain has been affected.  Wish I could better explain but I'm approaching the upper level of my knowledge now! 

Boys are OK thanks.  Not exactly getting on well with this heat which means Titch reluctant to eat.
TCCx
 
Hi TCC,

I guess it's a double whammy of the severe iugr plus a very stormy NICU journey. As you say, it's the unknown. Probably the hardest part for us mum's. The Paediatrician said there's nothing that can be done, other than to watch and wait. She went on to talk about the epilepsy and say that in these situations, sometimes they operate on the scarred area which can improve things. No sign of epilepsy yet so I'm hoping she doesn't develop it. But, it's better to be prepared and know what could happen.

The heat is really not great for them is it.

xx
 
Aww surfer girl we're in a similar but amazing things as the brain compensates in the most amazing ways and new pathways are being formed constantly, just have as many experiences as you can to open those pathways. We're back in for more metabolic tests in 2 weeks, purines & pyramidines (quite a bit on microcephaly when you look this up funny enough) these tests have to go off to Guys hospital and are hopefully definitive as fed up with positive organic acid tests without an answer now  ^bigbad^ have a great Sunday all x
 
Hi all  ^hugme^

How is everyone doing?

I'm having a 'my poor baby' moment and feeling a bit low. I'm sure you can all relate! He had his growth hormone testing Friday. We are waiting for news but think it'll be at least 3 weeks as the bloods get sent away and then they have to marry up the results with his bone aging X-ray he had a couple of months back. I'm so sick of everyone saying how small he is, if it continues he will have such a complex as he grows up  :'( He is back at the dietitian next week and then his neonatologist in 4 weeks. In amongst all this he has his 2 year check which seems ridiculous! If they identify a problem we get referred into services which we have been seeing since he was born!! He has enough people checking on him as it is! Grrrr! And tonight I did his nappy and saw his hernia has returned. I'm so upset, he's been through enough!!

Thanks for letting me offload! Love to you all xxx
 
Discussion starter · #277 ·
Aww Xlolly big hugs poor wee one and 3 weeks is a long time to wait but fingers crossed this will give you done answers,  And surfer hope you get some positive news soon. I feel so lucky that ivy seems to be fine so far, small but not off the chart. I'm having a huge wobble as the storage is up on out remaining embryos and I can't bring myself to fill in the paperwork to have th destroyed. We've decided we're too old and the risks are too big to go again and we can't donate them because of DPs age but it's so hard to let them go when we both would love another :(
 
Lolly I know the feeling my smaller boy is always commented on for being small.  People don't even realise they are twins.  He's still way off any centile.  He had IGF-1 test which was back pretty quickly as normal so they won't be looking at growth factor yet.  I'm seeing Clinical Genetics later this month and they will most likely do Bone Age x-ray. 

Titch has also started vomiting again which means his fundoplication operation has failed just over a year after it was done.  If the wrap was still in place he'd physically not he able to vomit.  I went into a bit of a panic fearing return to how things were last year not being able to get out of the house because of him vomiting.  7 times in one day last week.  I restarted his omeprazole which I had to give him at night when asleep, via Mic-Key  otherwise he'd bring it back up.  Once I'd got a dose to stay down long enough to he absorbed he settled down to couple of vomits a day and now stopped.  Last year full dose medications were not enough to control his symptoms which is why he had surgery.  Now he's bigger medication seems to have done the trick.    The worry never stops as to when something else will happen. 
Ivyf perhaps you should extend the storage until your settled as to what to do?  Seems you have conflicting emotions you say you are too old (you're not)  but you say you would both love another.

How did you get on with further tests Blondie?

Anyone else around too? Surfer any more news?
TCCx


 
Hi guys  :-*

Thanks for all the lovely support. The thing is he doesn't seem overly phased by things these days so I need to adopt that attitude and be strong like my boy! I do appreciate all the comments as I know you are each travelling your own journeys with ups and downs. Our babies are made of tough stuff!

TCC good luck with the genetics, as you know we've had similar on that front too. So sorry that the vomiting returned but I'm glad you are getting on top of it. What does this mean? More surgery or see how he manages without and whether it can be managed better with medication this time? Hope chunk is doing well?

FF how horrible! Poor baby, you must have been so upset. I bet FIL felt terrible. Hope little man is all better now. Mummy might relive the events for a while yet though!!

Ah Ivy what a dilemma. I would be equally worried about a pregnancy so I can see what you are saying, but at the same time I am not sure how I'd feel about having them destroyed. It's not a position I would like to be in at all so I send you big hugs  ^hugme^ Glad Ivy is doing well!

Love to everyone else, hoping for happy healthy babies xxx
 
Discussion starter · #280 ·
Omg FF your poor baby boy  ^eyes^ And TCC yours too poor lovey, I really hope he doesn't need more surgery. They're taking it in turns to have their moments aren't they. Thanks for the thoughts both of you on our embies, although we have lovely family I can talk to nobody quite gets it. My head says firmly. No more but my heart is saying hold into them. It's only £350 for another year but I know I'll feel just the same next year..
Big hugs to all x
 
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