well I thought i would pop in here and give a bit of an update...
last time i wrote we werent sure if little boy blue was going to make it and what (if any) hope he had beyond those first few weeks.
Well, the good news is that he is coming HOME!! he is now almost 10 weeks old and when he 12 weeks and the parents have finished all their training he will be able to go home with them!
it's going to be a long road, to be sure, but gosh darn it, these babies are amazing fighters! he will be on a tracheotomy at home and will still be on pretty much exclusive continuous feeds, but wow, to be coming home is such a big exciting/daunting/gorgeous step all in one!
AND!!! my best moment came yesterday when i got to up to NICU and give him a cuddle!!! this was the first time that i had seen him. i was going to go a couple of weeks ago but came down with a cold, so kept away from them all. and then yesterday the Big Day came for me! soooo GORGEOUS! *mwah*
I CANNOT wait for him to come home (can't imagine how the parents must be feeling....cause he's not even my baby lol!) and be able to visit and smooch! his mum and I have already booked in loads of couch and cups of tea time lol!
just wanted to send a big thankyou to you guys for the tips and advice. it was really strange being onlookers onto something so difficult but through your advice DH and I took it slow and just let them know once a week (or so) that we were thinking of them (by leaving a message, buying birthday pressies for the kids and dropping around food etc).
now i just need to organise a 'welcome home' gift!!!!
Oh wow hun, what fabulous news it is that he is coming home, so wonderful to hear of another little NICU warrior making the tough journey!!
Going home with a Trach is going to be a lot of work for them, I can PM you some details to pass on as I know another Traech mum who has a bucketload of experience and would be able to help out with any advice or info or just someone who has been there before.
for having cuddles!!!
I am so glad that you were able to do things for them and I am certain that everything you did was hugely appreciated
beema that would be wonderful if you could!! They are so happy and excited but nervous and terrified all at the same time IYKWIM. so some reassurance or at least knowledge that there are others out there going through something similar might be really helpful ITMS.
I thought it was time to update this thread (again!).
And it is all GOOD NEWS!
Little Boy Blue has defied all the odds and has turned ONE!! .
He is just beatiful! he has many special needs (feeding through a peg and the traechy for breathing etc). but in and of himself he is just a happy, bouncy one year old and he and my baby girl Marta are good friends
His mum and dad have been amazing little trailblazers for their wee man and have been able get a nutritional team together and develop a food plan (of various home-made purees) to feed through his peg. it was a bit of an uphill battle to convince the hossy that it was a good idea, but the results speak for themselves...within days of starting the food he went from surviving daily to thriving daily! it has just been joyous to watch.
of course, it is not always sunshine and lollipops as any parent of a child with special needs could no doubt attest; common colds pose massive risk and his little body is very sensitive to all bugs etc., but by golly what a gorgeous little person he is and has just been going from strength to strength (where they thought he might be blind and deaf, not only can he see but has better vision than me! and his hearing is perfect! his developmental milestones are only slightly behind, by a couple of months...yesterday he gave me a cuddle of his own volition!!! ).
so again, can i just say thanks to you all for being there when it was needed, it was such a scary beginning and the unknown was terrifying, but what we got was a beautiful kid that we share laughs and games with xx
Last edited by Cassius2; October 9th, 2011 at 02:22 PM.
I never saw this thread until now but when I read the first few sentences about this little boy it brought up so much emotion in me. My Aunty gave birth to a DD that had the same problem. Unfortunately she passed at 3 days of age. She would be 18 this month.
I am so happy to hear a good outcome to a similar situation. He sounds like on very special little boy and you are a wonderful friend to your friends for what you did.
this was the first time that i had seen him. i was going to go a couple of weeks ago but came down with a cold, so kept away from them all. and then yesterday the Big Day came for me! soooo GORGEOUS! *mwah*
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for having cuddles!!!
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