Hi guys
I am sorry if this post is disheartening for those who are new to or still fairly young in the journey.

I have twins that were born at 31 weeks and are currently 9.5.

My DS had the harder time in NICU (typical boy lol) yet apart from Asthma and reflux he is a pretty healthy, happy robust kid. He was a slight bit delayed with a couple of things and is shy but that said he is so much like his dad it is genetic thing rather than developmentak thing if that makes sense. he is doing G & t subjects at school etc and you would never know that he was a premmie.

DD on the other hand is the Complete opposite and this is who my post is about. She has had multiple and ongoing issues as a result of being born prem. She was FTT for the first 2.5 years of her live. then she had her tonsils out which resulted in better health and her Sleep apnoea went away and by age 4 we had with the aid of calorie loading etc got her weight to the 75% which was in line with her height, she was healthy and as she was in EI at age 2.5 by the time school came around we still had developmental delays and issues but as far as things were going I was happy, Paed was happy, Speechie was happy so you get the drift.

Then between age 4-6 her weight went down to the 50% and while her Paed wasn't pleased she also wasn't worried as she was at school fulltime etc. So rolling on to now Her weight has ciontinued to decline and she is now back under the 25% percetile and Paed is not happy and starting to become concerned so we have done a complete blood work up today and had a referral to a Dietician which brings me to my whinge. I was having a read of the letter and the thing that jumped out at me was the term "long standning issues from prematurity"

FFS she is almost 10 when is being prem not going to be a problem for her. So much for all the people that say oh they generally catch up by school age. Bah freaking humbug. I just feel like I have failed her so badly. I hate that she is a year behind her twin as she has had to repeat, I hate that she has so many things she needs to deal with it is not bloody fair. is there anyone else about who is still having issues relating back to prematurity so far down the track. i just want it to start getting better for her, to be able to stop obsessing about her weight gains and lack thereof. I want to get given the flick by her paed and told she doesn't need to come back ARGGHHHHH


If anyone can relate please let me know as I am feeling pretty down about it atm.

hi, couldn't read and not reply, my 'prem' (though only 34 weeks) is not yet school age so can't help there, but just wanted to comment... You have not failed her. I mean this and want you to think about it - you have taken her/them to a thousand appointments, followed up on whatever recommendations the professionals have suggestged, you have kept on top of it all and all the while continued to try to be a normal family. Unfortunatley preterm babies often do have ongoing issues, it's just that probably for a large portion of them (like your other twin) they do seem to 'catch up' (on a big scale level, ie not hugely behind at school etc) and people use this to 'reassure' you when they are younger. There must have been a number of factors contributing to how your daughter is presenting now, but rest assured you have done the best you can and she's a lucky girl having a mother who cares for her. Just keep on keeping on!

Sorry to hear that Emma has ongoing issues.

I think "they'll catch up by 2" or "they'll be fine by school" is a fallacy in most cases.
Noone can tell me that a baby can miss the third trimester and have no issues. Impossible. So much brain development, hormone establishment etc happens in that trimester.
The level of issues varies greatly, but I think few children would be completely unscathed.
Then again, some issues our children have may not be related to prematurity! We'd never know.

Molly is only 5 and appears fine, but I know there is more going on.
- She has awful teeth. Very pitted enamel. Hopefully the adult teeth will be better.
- She is still small, though having a growth spurt at the moment.
- She has self regulation issues, anxiety issues, attention issues
- SHe has gross and fine motor delays
- She has ongoing eating issues I believe are directly related to being tube fed
- Her sensory profile shows she is very sensory sensitive.
- She had ROP and there are long term implications of this

Not that I'm all negative. She is a delightful child who everyone adores.

I've done a lot of reading on The preemie experiment and Neonatology and the rights of families and more.
I also went to a seminar on long term implications of prematurity.

I guess I just deal with it. Molly's issues aren't too bad and are the price I pay for her survival of prematurity. I've been one of the lucky ones. Still brings some guilt though.

Don't be too hard on yourself. Sounds like you are following up on all the issues and dealing with what you can.
It will all be okay.

==

I was born at 29 weeks thirty years ago. I still have some problems that are traced back to being a prem

1. I have terrible gut problems eg. I often vomit for no reason and have lots of food intolerances.
2. I have crappy lung capacity which means I have trouble when exercising.
3. I cannot hold a pen properly I have always had to use a weird grip to keep control of a pen.
4. I was on a high calorie diet with supplements until I was 13 years old.
5. I have lots of autoimmune issues and they attribute at least half the problems to my prematurity.

A lot of things did get better after I hit puberty but unfortunately not everything.

Thanks guys
I am feeling slightly better tonight. I guess I just get so disheartened at times with the journey she has. Her weight has ALWAYS been up and down but to have worked so hard to get it "acceptable" to have it crash so low has been the final straw so to speak. When we were discussing her last lot of bloods and when they were etc The Dr looked at me and said given it has been over 12 mths and with DD she has this habit of having things just pop up (just when you think you have it sorted) that it would be worth having them, she has also added some others that I haven't seen before as well.

I know her journey is long term but some days I just wish things could be easier. I thank my lucky stars though as I had a major bleed at 28 weeks and as a result of bed rest and heaps of Fetal monitoring we knew her growth had slowed to the point I was on 3 times weekly monitoring and was told she was now in charge and that they could deliver at anytime they felt she was at risk. I had steroids on board which helped them both and when I went into pre term labour at 31 weeks I had started to dilate so that was it they were coming.

Jerry funny you should mention the feeding issues, DD gavage fed for a few weeks then had on going feeding issues due to her rotten tonsils. She also has the anxiety, self regulation issues. To list them all would be an epic but for all that I am pleased with how she is doing. Just got to try and get more calories into her somehow....

Thanks Robbie for your PM I will send you an answer but thanks for the link I will def look into it.

Ozbilby, thanks for your input. I must try and speak to my mums cousin. Her child was a 26 weeker over 30 yeasr ago and to look at him you would never know so I will have a chat to her. She was my greatest support in NICU as she truly got things.

It has been encouraging to see that the issues she is having other premmies are as well. I was feeling pretty alone as so many like my son do have the impression of being caught up.

Thanks it has been great

My twins were born at 27 weeks and are now 4.5 and are due to start school next year.

DS1 is going really well - we had the Asmtha/Lung issues but one tonsils have been removed he is so much healthier - he does have some behaviour issues but when is diet is free from Pres/Add/Colours he is a normal but very active little boy

DS2 just keeps having issues pop up, he had a much harder time in NICU, cam home later than his twin and met his milestones alot later, was always sick and terrible hearing, he had a sleep test at about 18 months and shocking sleep apnea's were discovered, tonsil,adenoids and grommets done 2 weeks later and he was a different baby - finally putting on weight, babbling started and general health improved dramatically. We are now on the journey of some diagnoses - current one is a global development delay possibley heading towards Auditory Processing Disorder and ADD. We are only just started accessing EI as he has always been on the cusp of his development and everyone (including Pead and MCH) kept telling me he was doing great and catching up but it was not until we moved and had a new MCH and Pead that they would listen to me and we have since been seeing Physio and Speech. Now we head into the school decision - should we send him or not.

I feel like I am failing him with what ever decision I make, hold him back from his twin and I feel like I have failed him in not even giving him the chance or send him and I have failed him by making school alot harder than it could be

I think when you add twin's into the prem mix and one is doing 'better' than the other it adds another dimension as you always have a comparison sitting next to them

I too have liked seeing this thread - most people think that by two prem issues should have disappeared

Cheers

Kerri

I hear you on the teeth, my two both have terrible teeth that I'm sure is a premmie thing.

We've literally spent thousands on teeth (the bulk on repairing Austins two front teeth that snapped in half when he hit them on a slide a couple of years ago), but still he has a furhter 10 fillings/seals already and Gilyl has 8. We've been told they have weak enamel that would be from premmie and then for Austins his poor feeding for the first 3 years. They have awesome diets otherwise, very low treats, but still... filling central here.

I'm sure my kids immune systerms are low still from it too, when theres a cold going around, mine will get pneumonia, if theres some unusual strain, we'll get it. We would be at the GP at the very least once a month, if not more often.

I guess what 'they' mean though is two years out of the intense phase medically then on to a drift of things.

Hang in there Mez, its not you, you're an awesome Mum. Sometimes its tough to watch our kids journey hey, feel helpless and frustrated at times.