Needing Advice as a Friend Watching On...

Hi guys and gals,

I am coming in here to ask for some advice and insight...

My friend and I have shared a large part of our pregnancy journey together. we live close by and our two kids have grown up together. Her baby was born the other week at full term, but from the moment he was born it was panic stations. He wasnt breathing and was not responding well to resus. almost 2 weeks later in NICU they finally have some idea of what is going on (basically two areas in his brain have not formed, or are not fully formed...still not clear exactly). these parts of his brain affect his ability to breath, swallow, and also affect his vocal chords and lungs etc. Basically this is a very special baby who will need at the very least many many many months of NICU.

Sooo, I was wondering some of the usual stuff, like, how do I offer support? how do I negotiate her feelings that must (as i can only begin to imagine) be a constant roller coaster, and how do i do this while pregnant and soon to be birthing and no doubt bringing my baby home? Our last phone call was beautiful and i miss her terribly and want to be there for her and her DH and their boys (little bubba makes three :)). My concern is that my pregnancy is having *some* affect on her as she kept saying that our baby was going to be fine and that i shouldnt worry...it dawned on me that she was also feeling guilty for putting me through this! oh my gosh i just want to cuddle her and tell her that i love her and just want to be there IYKWIM. is this even possible ATM or is it still too raw for her??

And then there is the more 'practical' side of support that DH and I want to offer but just dont know where to start...our plan so far is to cook meals and drop them at the back door in a cooler bag (they are at the hossy heaps and they told us back door would be awesome). but what else?? is there anything else? they have grandparents that have been fantastic in taking the older boys to give them a break, so they dont really need us for that, but maybe they could do with us babysitting them at home so the kids (our DD and their 2 DSs can play like they used to...i dunno, bringing back some 'normal' amongst the 'new normal'??).

argh! sorry for the rambling. i guess i need advice on how to navigate this as neither of us have been through anything like it before, so i guess any advice on both an emotional and practical level would be greatly appreciated at this point. I really dont want my pregnancy to stress her out, but i dont want to 'disappear' (unless she needs that....gosh i hope not...) and i want to be able to help out like you would in your 'village' IYKWIM....

thanks in advance for ANY advice. it has taken me almost 3 weeks to write this, as i was secretly praying that bubba would make a full and speedy recovery...but i guess i need to admit that i really need help with this one....

xx

Firstly big squishy :hug: for you and your friend. It must be very difficult for you to also comprehend this while pregnant as well.

The food drop off it really good, it just makes things easier, also perhaps other than meals some food they can grab and run with and take with them to the hospital, ie home made trail bars or muesli bars, fruit, banana bread, savoury scones, because being in and out of NICU all day the hospital food can still get tiring and sometimes it is easier to just grab something from a machine.

Some play packs for the boys, if they go to the hospital on occassion, things for them to do, small books, colouring in books etc

How about some gardening, mowing lawns or weeding, can you DH help more with that one, or offer to vacuum the house, fold washing, ironing, wash cars, pick up some groceries, like a box of fresh fruit and vegies, nice bread or somthing along the "everyday tasks". Sometimes it is help with the "smaller" things can take a lot of pressure off.

Could you make a special sign for his isolette, name tag etc and get it laminated? Do you know if she has a journal to write down her thoughts and feelings, it can really help to write things down.

I will think more about it and if I have something else will come back.
Sending hope and courage to their little man :hug: xxoo

oh Beema thank you so much!! i have tears streaming down as those ideas are just amazing! so glad that you could also understand my rambling lol!

the snacks for them and the packs for the boys are FANTASTIC tips. i can only imagine how harrowing it is to have a 5 and 2 year old in there (she mentioned that she feels really guilty having them there as they appear to be the only ones with older children...). so no doubt a 'fun activity' pack would go a long way.

i'll have to check out some recipes for tasty and healthy muffins. mebbe also some scones, like cheesy ones and pumpkin ones...

and DH would LOVE to help in the garden. he mentioned how the last time he saw alice they 'hoed' the veggie patch together...i'll get him over there to de-weed...

so with the picture thingy...how big/small? i am thinking a normal photo size?? maybe pic of mum, dad and the boys...she told me how hard she finds it to leave bubs of a night....so maybe that could 'help' keep a piece of her there...

sorry again for a million questions!

No worries at all hun :hug: I am so sorry I made you cry :comfort:

A5 size would be the maximum for the label, similar to the size of the labels that the hospitals put on the cots with bubs stats on it. Photos of the family is perfect, you can do up a couple and they can rotate them around as well :)

Beautiful messages/words, like strength, courage, love etc are also nice to integrate and even some for of angel or something to watch over their little boy when they can't be there, DD had a little Panda :)

must run and pick up DD from Daycare but will be back xxoo

Cassius I've only just read this.....Beema has given you some great suggestions. From my point of view, walking this journey right now your idea about babysitting her boys at home with your DD to play would be a great idea. Right now if DP & I both want to be at the hospital we need to have someone else look after DS and to have someone come to our place is a real help. We don't have to go through the drop off / pick up routine, and if its at night they can put him to bed for us which means we don't have to rush away to get him before he gets too stroppy at night IYKWIM? Plus having other kids around is a great distraction for them.

You're such a beautiful friend for reaching out. Hugs to you xx

thanks beema and infinity!

beema: i'm going to get DD to do some 'art' (like a name card thingy) for the baby. and then i will go through our photos and get a few laminated. i like the idea of rotation! (he is going to be there for months and months so diversity is the key!).

infinity: oohh i do like the idea of night time babysitting too! DD and her DSs have had sleepovers before together so could be done with relative ease! unfortunately they have just come down with chicken pox so will wait it out for a week then head on over...this way the kids can also play with the neighbours (atm after school they go straight to grandmas, which no doubt is nice, but not what they would normally do ITMS). ohhh this could work! :dance:

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!!! :dance: 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!!
:happyforyou:

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.

:leap: 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 :hug:

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.

thank you :hug:

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!! :dance:.

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!!! :loveshower:).

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

Thanks for the updates! Wonderful news.

Wow what a fabulous result!

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.

what a lovely story (and as we all know what a gorgeous friend you are)

That's awesome, what a beautiful story x

Wow never saw this thread but what an amazing baby boy and fabulous family!!
Glad he is doing well despite the odds

Just saw this! What a beautiful update!! :loveshower: