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In and out off Hospital. Lock Rss

Hey there my lovely baby aria was born at 33+3 days on 31.3.13 she was diagnosed with down syndrome and wouldnt change her one bit we spent 7 weeks in hospital since coming out we have been back 3 times and found out she has a 10mm hole in her dear little heart and kept going into heart failure. we are finally home again but on tube feeding. I love her so much but i am a single mother doing this on my own i feel bad feeling so stressed everytime she gets a cold or a bug she is back in hospital. One Monday i had to do cpr and she was turning blue and not breathing it was the most horrible feeling i have had in my life. I am constantly worried and exhausted from the tube feeding and the months in hospital. I have tryed finding support groups but can not find any. I am just wondering if i am wrong feeling jealous off other parents that get to go to coffee groups n the shops when they like and hang out with friends. Only time i go out is to appt after appt. I love my dear little girl so much and feel guilty for having these feelings is there anyone that knows of any support groups that i can come into contact with or any advice for me to cope with the high demands and worrys any help will be appreciated smile thank you for reading and letting me go blah.

I do love her so much and appreciate every moment i have with her. she is amazingly strong and couldnt even begin to understand what it is like for her. I take the biggest pride in the smallest of things with her.
Massive hugs to you, what an amazingly strong woman you are. Your precious little Aria sounds like she's having a rough time and must be super strong like her mummy to be trucking through it all. I don't really have any advice for you unfortunately, i cant even begin to imagine how you're feeling-Although to me your feelings of envy sound completely normal so please don't beat yourself up about that. I'm not sure what area of NZ you're in but you could try ringing your local plunket and seeing if they have any support groups they could recommend.
My friends contacted the NZDSA info line and got some great info and advice from them, could be worth trying too. I think it's 0800 NZDSAI (693 724)
All the very best xx
Thank you so much i am seeing plunket for first time today I know they have groups its just i cant exactly go to them unfortunately as bubs has machine to feed and to risky to take her out in case of bugs sad but i will ask her about anything online or over the phone or books i can read. I will give that number a call too. I live in a small town so unfortunately theres not alot off people in the same situation.

I feel better when i am knowledgeable of the situation feel bit more in control even thats why i thought i would ask on here smile
o hun that must be so hard to go through. all your feelings are completely understandable with what you have been and what you are going through, especially alone as a single mother. Where in NZ are you?
cause if your in Auckland i have found a group called Auckland Down Syndrome Association.
They have support groups and do coffee mornings for mums with young babies and heaps of other stuff.

if your somewhere else in NZ i can have another look for something.

Sending you some big hugs and positive thoughts your way. xxx

That makes a lot of sense. You'll be a walking encyclopaedia on the topic in no time! My mother in law's last foster child was tube fed also, it was a real eye opener for me to see the process and how busy it kept mum, so I really appreciate the extra amount of work it is for you just with the tube feeding alone. It's fantastic that you've made the step to find alternative support options for now while getting out and about is tricky. I will be following yours & Aria's progress with interest if it is a story you wish to continue to share. xx
Thank you all so much for your kind words its amazing how much that can do for me in the moments you feel alone. I have just seen my plunket nurse for first time and good news aria is on track with all normal stats for a baby woots smile aria had a good time showing off what she is capable off along with piddling on us lol. Benjamins mummy i unfortunately dont live in Auckland i live closer to the city Palmerston North. I have thought about moving to a bigger place but i really enjoy small towns. But in saying that its another thing I have no idea about wether it would be better for her to go to a main city or not....Things are very confusing while shes still this little you just don't know.
What a beautiful name Aria is, and what a beautiful little girl you have!

It is a tough journey figuring this all out on your own but you sound upbeat and like such a good mum!

Anyway, have you come across this forum ?
It is a closed forum which offers great support and heaps of contacts. You may even be able to find other mums near you.

Big hugs and congrats on a beautiful bub who is going to make your life amazing smile
first of all GBH it is a hard thing, 'DD1' is tube feed has has CP she is now nearly 2 years old, she is not ours but my neice and all I can tell you is it will get easier you will learn a routine and then also start getting around, we did it took me a while but with the 2 of them we go out and see people (only certain freinds) but all i can say it does get easier I had dobuts that i could do it but i would not go back some days are hard and some days are rewarding good luck

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