Struggling with slight delays

[inperfected]

I'm mum to a 21 month boy, nearly 19 corrected (29 weeker).
He is doing pretty well so I keep getting told by the development team and the like - 6 monthly visits just to keep an eye on him.

I'm finding it pretty hard seeing mums of prems on a page I'm on get overjoyed that there child is walking, saying mum, dad or things like that. J is able to take a few steps, but has been doing that for 2-3 months already, and they've said it'll likely be 20 months corrected before he can (at my projected development rate supposedly). Words are coming, good cat (that's the word for cat thanks to hubby messing his brain on that one!! ), woof, dog and ba for bottle, water, or dummy, and "ow/owie" which we get 100x a day. He was saying whats that, but that's disappeared again too. Four words is WONDERFUL, but the "mum" word (where he's sort of said dad, just not to dad for a while now) is not happening yet.

I know that it's all likely connected to him sleeping so much (which the doc told me was a "prem" thing, waiting to see paed about it). He sleeps on average 16-18 hours a day,and 17 is probably "normal". Yeah, a lot, which is one of the other reasons I'm feeling frustrated as he only gets 2.5 hours up before needing to go back to bed. Whereas I'd like a day trip with us all finally or just something before we have another child, actually in saying that, he sleeps as much as a newborn still, so it could be him still holding us up once another child's moved on (not yet pregnant).

I just needed to rant where people will understand I guess. I'm having a bad few weeks with it as I *know* he'll get there, but I kinda want people to say "I know it sucks" rather than it'll get better.

 

[Stelly]

Aw ... my LO is not very old yet, but was born close in gestational age to yours (28 weeks)- so I can't relate quite yet to some of the later development steps... but I can say, I do know it sucks. and just.... I know nothing I can say will make it better or be some profound new enlightment on preemie development lol but all i can say is- I feel ya my dear, I feel ya. You are doing so wonderful with him, just got to keep on keeping on

 

[AP]

It does bloody suck, it really does. Its hard not to compare, I've seen fellow 27 weekers on here saying so much and boy it hurts, but I've eventually come to terms with it most days and realise its just "her way".

 

[inperfected]

To be honest? i'm so glad to hear those comments. I know he's doing pretty well considering how differently the outcome it could have been.
Today, it kind of helped having a wee cry in front of him to be honest (about something else completely, and I don't like to) but have a wee talk to him (as he was concerned and wanted cuddles cos I wasn't happy) and effectively said, why won't you be normal, say mummy etc. He doesn't understand a word of what I said and that's fine, but getting those emotions out helped.

At this stage, it looks as if he'll do it all, just a bit slower than others in uptake on it. Though, yesterday, he managed to walk across our lounge! Todays back to 3 steps max again, but he'll get there.

And more honesty, I think the prospect of waiting to find out if I'm pregnant for month trying #1 is definitely making me a bit more emotional this month!

 

[amy2boys]

My DS2 was born very premature after very similar events to your DS (contant bleeding. SCH and placenta abruption) some thing he was fast at achieving (like crawling and walking) some things just took alot of practicing (speech and eating)
He is now 5 years old and his teacher is so amazed at how has he come from behind but is now ahead alot of his peers, they will all do it in thier own time.

 

[inperfected]

I know, it's just needing the freedom to grieve a natural normal progression and the freedom for him to develop as quick as he would without monitoring and assistance etc.

 

[vermeil]

If you have an early preemie do yourself a favor and toss that milestone book right out the window. You'll only worry yourself constantly for nothing. No really, you`ll just drive yourself nuts second guessing everything.

My son was a 27 weeker at 1lb 4oz. When he finally left the hospital, a mere weeks later on his follow-up apointment the doctor noticed he was stiffer on the right side. She suggested partial paralysis and so probably mild to medium cerebral palsy. I was sooooo upset I cried for days. My son had survived SO much (nec, ruptured lung, etc etc - see sig for pics) only to find out he had brain damage. The doctor said he might never walk.

We started physiotherapy. You know what? within 12 months he was PERFECTLY NORMAL. His amazing preemie brain just rewired itself and adapted. ALL SIGNS OF PARALYSIS DISAPEARED! How incredible is that.

I am so, so grateful he is still with us, I thank the heavens every day. He is late with every single milestone. But consistently late. Borderline normal late. But he`s ALIVE and overall HEALTHY. We had a detailed, 3 hour long psychological exam when he was 2.5 and he`s behind physically in all areas, but actually ahead cognitive wise. I cried tears of joy.

He`s turning 3 now (celebrating his birthday in a few hours!) and he`s alert, active, bubbly, happy and full of life. His daycare provider (who knows nothing of his past) said he was really bright and caught on quickly. I BAWLED when she said that, just burst out crying. She stared at me in confusion. 'no no I'm just soo *sniffle* haaaaappppy!!' I said. I think she thought I was nuts but it was such a relief to hear.

I spoke to my pediatrician of my concerns regarding his overall development. He shrugged and said

'will he walk and talk by the time he starts school at 5?'
-"errr yes, probably..." I replied
-"well then what`s the problem?"

I was stunned. He was soooo right. He will walk and talk before he`s 5. Before that, who cares!

Just believe in your little one. They`ll keep surprising and amazing you.

 

[juicyfruity]

my LO wasnt as early as your LOs but im struggling with this too...i have found myself cuddling her tearfully saying "why wont you smile for mummy?" i hate reading the milestone books and constantly trying to 'minus 6 weeks' or whatever.

 

[AmyB1978]

My daughter was also not an early preemie, was a 34 weeker like the previous poster so I know it is nowhere near the same but I do get it too, on some level anyway. My mom and dad are visiting and keep comparing my daughter to my niece, who was born full term just shy of a year before my daughter. "Oh but Brooke was doing suh and such thi time last year." I m so beyond frustrated! I also struggle to know if she's ok, not really sure where to go as a guideline, to know if she's on track, even if for her adjusted age.

to all of you. I know how terrifying watching my girl struggle in the NICU was, and how it's scarred me, at least for now, but I also know w went through, and re going through, nothing related to familie who's babies are really early.