Feeling a bit :(

[x-amy-x]

Connie has been home for a week now. The whole prospect of her being permanently disabled has definitely hit home.

I love her with all my heart but feel so unbelieveably guilty for everything she has been through and will continue to go through.

I've read so many stories about these little miracles coming through with very little problems but I can't help but feel, deep down, that Connie isn't going to be one of the lucky ones.

Is it normal to feel like this?

 

[Marleysgirl]

I think so. Even now, over two years later, I still have wobbly moments when I get upset at how much our little boy has to go through, the amount of support he needs and will continue to need

And then I think of how far he's come, how determined he was to survive his premature birth, how strong he must be ... And I remember just how lucky we are

 

[25weeker]

I felt a lot like this in the first year after Holly was born because of her prematurity and her brain bleed and it could be very overwhelming. Particularly when you tie it in with thinking it was your body that failed to do what loads of other women seem to do without any problems.

My fear has lessened as she developed because I now know she will walk & talk because she is doing it. I still constantly analyse her right hand & foot (her bleed was on the left) and I still purposely put her spoon or fork to her right side so she uses that hand because although so far they haven't seen any stiffness or weakness I worry some might develop. I know a doctor would probably laugh if I said that but when it's your child logic goes out the window.

I am still not convinced holly will come away from all this totally unscathed because school will be another indicator but we will just have to wait and see and continue hoping.

Time has also made me realise we will cope with whatever happens and so will you even though right now you think you wouldn't. Xxx

 

[Sam182]

I live in constant fear that Alex will have a hard life because I couldn't carry him to term. His oxygen requirement and hearing loss are a constant reminder that he might never develop the skills of a term baby. The one thing I remember though is that he is a little miracle and no matter what he can't do, anything he can do is amazing

 

[MissMummyMoo]

Big big hun. I don't have any advice but wanted to let you know I'm here for you. If you ever fancy a break from it all or just a natter just send me a text x

 

[AP]

Big hugs here too. I do worry still, don't get me wrong, but all I care about is that Alex is happy and well. So friggin what if she's delayed, she's my little miracle she's a total joy. The first year was hardest, I didn't know what to expect but if I knew how she'd be now I wouldn't have worried at all. She will exceed your expectations I know it Hun xxxx

 

[Skadi]

Oh Amy I don't really know what to say. I feel kind of guilty in a way because Keira hasn't had any real problems. To be honest though, it must be normal to feel the way you do because I certainly feel the same way! I am sure Connie will pull through and exceed all your and her Drs expectations, she is such a strong little baby!

 

[vermeil]

My son is almost 2 now (well 19 months corrected) and I STILL worry about that every single day. Despite having no brain bleeds or any anomalies on scans, we noticed he was lightly paralysed on his right side when he was 4 months corrected. We started physio while we waited to be admitted to a specialized center for dnm (neuro-motor deficiencies). We were told it might worsen and he might never walk.

Funny thing is, when we were finally admitted 7 months later, all such signs had disapeared. He`s now a fully normal, happy, playful toddler.

But it`s always in the back of your mind. I`m sooooo paranoid I observe every tiny detail like a hawk. Plus the constant 'follow-up' appointments don`t help - with the neurologist, ergotherapist, physiotherapist, orthophonist, neonatal, orl, optometrist, audiologist, etc etc. I know they all just want the very best for him, and are 'only' following him closely because he was such an extreme case. But dang it if these aren`t daily reminders that something *might* still be wrong.

Now the neonatal specialist is sending him to a baby psychologist (yes you read that right) to evaluate his cognitive skills. Only because I answered 'err no' to so many of her questions. No he doesn`t know 25 words yet, only about 5 - no he doesn`t understand 'simple' instructions like 'go to the kitchen' (simple? SIMPLE?). No he can`t pick out a duck from a list of animal drawings if you ask him to. No he doesn`t string words together beyond 'mom look!' (err isn`t that good enough?). No he can`t fall asleep alone. etc etc etc.

I found myself defending my son, saying 'he can make fish, cat and bird sounds if you ask him! He can point to a car if you ask (but somehow that`s not good enough!) He`s figured out all the buttons on my smart phone, how to open most bottles, how to work any lightswitch or handle, he can count to three (she NEVER believed me despite my insisting), he can sing the notes to frere jacques (a french nursery rhyme) pretty dang well, the staff at daycare say he`s really bright!' at the end I just felt pathetic and dejected. I left there depressed with a referal to a baby psychologist.

Some times - heck, all the time I feel like I'll worry like this for the rest of my life, or until he graduates from medical school or something

 

[toothfairyx]

Amy I totally felt like this, terrified the doctors weren't telling me something and I made myself ill worrying about what might have been. Fast forward 18 months and you wouldn't know Jamie was ever early. So don't stress yourself, just enjoy having her home xx

 

[Charliej101]

Baby psychologist!!!! He sounds like he's doing really well theres a lot of full term 2 year olds who don't have 25 words.

Im also constantly worrying about Lydia's development, Im always googling what she sould be doing at her corrected age then panic for weeks that shes not doing something then she does it. I worried about her not smiling (she did it at 6 weeks corrected) then not playing with toys (started at 3 and half months corrected). The current panic is not sitting up unaided or rolling at 6 months corrected. I keep telling myself she'll get there in her own time but then Ill see other babies younger than her corrected age doing it and start panicing again.

Im sure Connie will amaze you with how well she does but I know its hard to stop worrying x