The VT Baby club

[Stevo985]

On 11/02/2022 at 14:11, Davkaus said:

Healing well after her surgery, back to full feeds, we had the best day we'd had in weeks, with her having 8 hours at a time without the CPAP, I had her for a good 4 hours of cuddling and stories, and her mum and I were feeling the most optimistic we have since before the surgery, only to find she's suffering from infection, and they think it's meningitis. A couple of hours after that we got called into "The Room" for a consultant to tell us a routine head scan had shown signs of severe brain injury that give her a very high risk of her struggling to develop motor skills. This is a never ending nightmare. A seven week old baby shouldn't have to go through this shit. Now her mum's been referred to mental health specialists because she's on the brink and I'm sitting here trying to keep shit together like it's all fine.

I feel bad that I haven't been in this thread following your progress.

And I feel terrible that when I did finally come in here it was because I wanted to moan about how hard it is having a newborn... and then I read this.

Thoughts are with you all mate. Fingers crossed everything improves. Rooting for you so much

[lapal_fan]

@Davkaus - No idea how I've missed all this, but just read back from early January - I'm so sorry that your daughter is going through such a hard time, I can't imagine the worry and anxiety you and your partner are going through.

I knew a prem baby born at 16 weeks and the first 2 years are very scary, but she's here and is a right feisty little thing, so keep in mind that these "miracle" babies DO have a good chance!

The best thing you can do (from my experience at working at a hospital) is trust the Dr's/Nurses around you, be there for her as much as you can and enjoy the time you spend with her - she'll be flying soon and you won't keep up  

Hope she gets over this latest nasty as soon as possible! 

 

[rjw63]

I don't usually frequent this page as I'm not that interested really but @Davkaus'problems have made my own recent annoyances and shit seem ultra trivial.

Hope things can eventually improve, old chap. 

[Ingram85]

All the best @Davkaus and hope things improve for the little one and for her mom and dad. You have the sincere best wishes of the whole VT Family behind you and we are here when you need us. 

Edited February 17, 2022 by Ingram85

[Davkaus]

Cheers guys, tbh even if nobody was interested it's quite therapeutic to have somewhere to just come and vent, because the last thing either of them need is me losing my shit in the hospital.

She seems absolutely fine over the last few days, and she's hitting her milestones, she isn't due for another 4 weeks yet, but she's opening her eyes when she hears our voices and tracking us, she can latch on and support her own head. She's doing brilliantly. But this thing is going to hang over us for years until we know one way or another, and it's the uncertainty that's killing us. Babies brains are plastic and we've been told there's a chance her brain will just adapt and route around the damage, and we'd never know - can't put numbers on it, but there's a chance. At the other end there's an increased risk of severe disability, cerebral palsy, etc. She might just be slow and hit things late, or she might do ok with some things but then never learn to walk. We just don't know, and the hard bit is going to be not having a breakdown and assuming the worst every time she's a bit late to pick something up. We'll love her and do the best we can to give her a happy life no matter what happens, obviously, we just don't want her to struggle.

We've had a bit more reassurance of the possibility of a positive outcome and a normal life in the last few days, the most we got from the first consultant is, word for word "it isn't completely without hope". Just what scared parents want to hear.

[lapal_fan]

29 minutes ago, Davkaus said:

Cheers guys, tbh even if nobody was interested it's quite therapeutic to have somewhere to just come and vent, because the last thing either of them need is me losing my shit in the hospital.

She seems absolutely fine over the last few days, and she's hitting her milestones, she isn't due for another 4 weeks yet, but she's opening her eyes when she hears our voices and tracking us, she can latch on and support her own head. She's doing brilliantly. But this thing is going to hang over us for years until we know one way or another, and it's the uncertainty that's killing us. Babies brains are plastic and we've been told there's a chance her brain will just adapt and route around the damage, and we'd never know - can't put numbers on it, but there's a chance. At the other end there's an increased risk of severe disability, cerebral palsy, etc. She might just be slow and hit things late, or she might do ok with some things but then never learn to walk. We just don't know, and the hard bit is going to be not having a breakdown and assuming the worst every time she's a bit late to pick something up. We'll love her and do the best we can to give her a happy life no matter what happens, obviously, we just don't want her to struggle.

We've had a bit more reassurance of the possibility of a positive outcome and a normal life in the last few days, the most we got from the first consultant is, word for word "it isn't completely without hope". Just what scared parents want to hear.

Dr's can be incredibly vague.

For our first lad (full term) the Dr asked for us to go and get a scan on his head, because he believed his skull bones had fused, which as the brain grows gives absolutely no room for growth and would give him a very disabled life.  

For 2 weeks (paltry compared to yourself) we were beside ourselves with woe and anxiety.

Took him for the scan, another week and we had a phone call from the initial Dr saying "nope, all looks fine".. My wife and I just looked at each other thinking "if it was so precautionary, why word it so... definitively!?" A week later I climbed Ben Nevis, got to the summit and cried my eyes out   

Must have been all the pent up anxiety, I wasn't expecting it, but wow - everything just came out for 5 mins.. 

[Risso]

All the best Dav. If it's any comfort, my niece was born 3 months premature, weighing just about 1lb. She wasn't expected to survive, and if she did her prognosis of a normal life wasn't very good. Well she's 9 years old now, and is absolutely fine. She was on oxygen for the first few months of her life, and her parents had to carry a canister round everywhere they went, but now my niece is in to rock climbing and gymnastics. Hope everything is similarly fine for your family mate.

[TheAuthority]

As others have said, the VT family is here for you @Davkaus

My sons day school teacher told me today the "inclusion team" need to do some work and assessment of my 3 year old because of behavioral issues (hitting.) After the day I've had I nearly lost it, and then I read what you're going through and I feel like a really ungrateful tw@

Anyway keep us posted and come and vent anytime.

[Davkaus]

On 17/02/2022 at 09:08, Stevo985 said:

 

And I feel terrible that when I did finally come in here it was because I wanted to moan about how hard it is having a newborn... and then I read this.

 

I've kind of hogged the discussion in here over the last few weeks! How are you getting on? 

Edited February 22, 2022 by Davkaus

[Stevo985]

10 hours ago, Davkaus said:

I've kind of hogged the discussion in here over the last few weeks! How are you getting on? 

Don't worry mate, your situation sounds a lot more taxing than mine!

We're getting on good. Jack is awesome. He's had some problems with bad reflux which means he hardly sleeps at all, so our sleep is all over the place, which is tough. But like I said I feel bad moaning given how hard your situation must be  
He finally got prescribed Omeprazol and things have definitely improved. he's sleeping a few hours here and there now so hopefully we're on the right track.

The most worrying thing is yesterday he had what I'm really scared was Infantile Spasms. He just suddenly tensed up. But not like your normal tensing up that babies so when they're having a shit or whatever. Like a really sudden, violent, outstretching of his limbs followed by a loud scream from him. Like something from the Exorcist. Only lasted a second but it was really striking, and I just knew it wasn't normal. He did it twice more in the next half an hour or so, so it wasn't a one off.
took him to the doctor and they're unconcerned. Told us to monitor it over the weekend and talk about it on Monday when he's got his check up.
But some googling brought me to Infantile Spasms which sound quite nasty so I'm really hoping I'm just jumping to the wrong conclusion.

 

Speaking of moaning, Jack's mom has a good friend who gave birth exactly a week after her and she's really winding us both up. Her baby is perfect. She sleeps all night, nothing wrong with her. She's messaged Jack's mom twice this week, once moaning that her baby "only" slept from 7:30pm to 4am (we were lucky if we get 45 minutes until the week just gone). And yesterday moaned that her baby had cradle cap. Which is glorified dandruff.
Especially after reading your post I really wanted to reply to her and tell her to sod off. She's lucky she has so few issues that she's worried about dry skin

On the other hand her baby is ugly as **** so joke's on them.

Edited February 23, 2022 by Stevo985

[hogso]

My daughter suffered from reflux too, got as bad as us having to go to A&E with her. Well, I say 'us', at the time only one person could go in of course. Anyway, she'd lost weight as she couldn't keep much down, and they kept her in for some obs and stuff, but turned out OK once we had a couple of changes of formula to some hyper allogenic stuff. 

Slowly but surely she started to get over it though, we eliminated various food stuffs to try and determine allergies,  and she came off the omeprazol eventually too. Just kind of grew out of it, which isn't uncommon apparently. Now we've got to the point on the milk ladder where she's having boiled and cooled milk, which is the last step before having pure cow's milk, and then she'll be off the formula. 

She's still small, which was a bit of a concern for a while as she'd also started to drop down the percentiles, but I think we're at the point now where we know she's just going to be short. But then, more or less the whole of our families are too.

[Genie]

59 minutes ago, Stevo985 said:

Speaking of moaning, Jack's mom has a good friend who gave birth exactly a week after her and she's really winding us both up. Her baby is perfect. She sleeps all night, nothing wrong with her. She's messaged Jack's mom twice this week, once moaning that her baby "only" slept from 7:30pm to 4am (we were lucky if we get 45 minutes until the week just gone). And yesterday moaned that her baby had cradle cap. Which is glorified dandruff.
Especially after reading your post I really wanted to reply to her and tell her to sod off. She's lucky she has so few issues that she's worried about dry skin

On the other hand her baby is ugly as **** so joke's on them.

Edited 57 minutes ago by Stevo985

Oh yeah, I’d forgotten about these types. Her child will be walking at 6 months, potty trained at 9 months and dazzling scientists with how academically advanced it is when it’s 5. It’s all bollocks, I don’t know why some moms bs like that do it but they do. Trust me, she isn’t mom of the year and it’s not the most intelligent baby on the planet either. She’ll be going through it like everyone else.

How are you getting in with the ex? Any slight hints that she might wanna try again in your relationship?

[JoshVilla]

On the reflux front - our daughter has suffered quite badly with it. Went to the doctors, got referred to the specialists and they've put it down to cow's milk intolerance. She's been on several different milks and she's now on Neocate, which essentially has the milk protein fully broken down. Smells (and apparently tastes) disgusting as it's basically fully digested. However, it does seem to have done the trick as she's feeding a lot better and not vomiting anywhere near what she used to. We did try Omeprazol but we found that it didn't really do anything except bloat her up, which is probably what made them sure that it was an intolerance as opposed to the usual reflux.

[Stevo985]

19 minutes ago, Genie said:

Oh yeah, I’d forgotten about these types. Her child will be walking at 6 months, potty trained at 9 months and dazzling scientists with how academically advanced it is when it’s 5. It’s all bollocks, I don’t know why some moms bs like that do it but they do. Trust me, she isn’t mom of the year and it’s not the most intelligent baby on the planet either. She’ll be going through it like everyone else.

Yeah she's a prick to be honest. The issue is the Ex can't help but compare herself to her. She had on instagram that she'd gone on a walk a few days after giving birth and Jack's mom was all annoyed and felt bad because we hadn't been out yet. But this other girl had a really straight forward birth. Ours was horiffic so of course it would take us longer to go for walks and stuff.
So yeah I just laugh it off but she takes it to heart

20 minutes ago, Genie said:

How are you getting in with the ex? Any slight hints that she might wanna try again in your relationship?

We're getting on really well actually. Nothing romantic is happening, I don't get the impression she wants to try anything. 
But as a plutonic relationship it's great. 
And I think we both acknowledge that currently we're getting a lot out of the situation. I get to spend as much time as possible with him, and she gets round the clock support from me.

So it's mutually beneficial

[mjmooney]

1 minute ago, Stevo985 said:

I don't get the impression she wants to try anything. 

So soon after giving birth, I'm not surprised! 

[Stevo985]

23 minutes ago, JoshVilla said:

On the reflux front - our daughter has suffered quite badly with it. Went to the doctors, got referred to the specialists and they've put it down to cow's milk intolerance. She's been on several different milks and she's now on Neocate, which essentially has the milk protein fully broken down. Smells (and apparently tastes) disgusting as it's basically fully digested. However, it does seem to have done the trick as she's feeding a lot better and not vomiting anywhere near what she used to. We did try Omeprazol but we found that it didn't really do anything except bloat her up, which is probably what made them sure that it was an intolerance as opposed to the usual reflux.

Yeah going down the non-dairy route was next on our agenda. In fact Jack's mom had already started to cut it out but we decided to push that back because of the omeprazol. As in if he got better we wouldn't know whether it was the medicine or the non dairy causing the issues. 

But the omeprazol seems like it's working so hopefully that will sort it.

His had got so bad that he couldn't feed half the time. It was hurting him to swallow because the acid had damaged his oesophagus. He'd stopped putting weight on at the rate he should so that's why they eventually prescribed omeprazol

[Stevo985]

1 minute ago, mjmooney said:

So soon after giving birth, I'm not surprised! 

Haha I didn't mean it like that  

[PieFacE]

Hadn't really ever ventured in this thread before but glad things are looking up @Davkaus.

How old is your baby now @Stevo985? Ours is 2 months and he's still barely sleeping for more than 1 hour at a time in the night. Anyone complaining that their baby only slept for 8 hours can shove it  

[Stevo985]

11 minutes ago, PieFacE said:

Hadn't really ever ventured in this thread before but glad things are looking up @Davkaus.

How old is your baby now @Stevo985? Ours is 2 months and he's still barely sleeping for more than 1 hour at a time in the night. Anyone complaining that their baby only slept for 8 hours can shove it  

8 weeks tomorrow so around the same as yours!

Yeah we weren't getting more than an hour at a time until this week. His reflux just meant he was constantly waking up. He'd only sleep in our arms.

Thankfully the omeprazol looks like it's helping things. 4 nights in a row now I've had him down for anywhere between 2-4 hours.

[PieFacE]

7 minutes ago, Stevo985 said:

8 weeks tomorrow so around the same as yours!

Yeah we weren't getting more than an hour at a time until this week. His reflux just meant he was constantly waking up. He'd only sleep in our arms.

Thankfully the omeprazol looks like it's helping things. 4 nights in a row now I've had him down for anywhere between 2-4 hours.

That's good going, glad it's getting better!

We had very similar issue where he would only sleep on us but we've just managed to get him to sleep by himself in a Sleepyhead which is a step in the right direction. Would recommend trying a Sleepyhead if you haven't already, it was the only thing that he'd sleep in other than being lay on us all night. Though, I guess it's a bit of a lottery with what works and what doesn't at this age. Just gotta try everything. 

Edited February 23, 2022 by PieFacE