So we begin our NICU journey....

Things have been so busy for us I haven't had a chance to jump on & post. Finally made myself stay at home tonight to have a bit of a rest.

DD is still going well. She was officially full-term in corrected age on Sunday (her day 101) so that was a day of very mixed feelings for me. Passing her 'should-have-been' EDD was always going to be tough. The main issue now is her growth. She has plateaued and they're still troubleshooting to try & pin-point why. It could be related to a lot of things most likely a lot of factors mixed in together. Some of it relates to the ileostomy (which kind of short circuits their digestive systems), partially its related to gut sensitivity and trauma from the infection & surgery and malabsorption issues. Also its related to her liver function which is getting much better now. Still trial & error with milks too which is getting eternally frustrating. Today they've asked me to cut out breastfeeds for 3 days to see if it makes any difference to the composition of her output. I dunno. I'm happy to try it but truly don't think one breastfeed a day would be contributing that much. So we'll see. The thing is that until they get her growing consistently there won't be any talk of home.

So still plodding along really - I had hoped to have her home for my birthday which is at the end of this month, but DP & I were talking tonight that I don't think we'll get that gift. Doesn't really matter though, she'll be home when she's ready.

Night all xo

glad all is going well. I will be hoping and preying that somehow some way heidi is home for your birthday :hug:

let's hope that you guys can get back to BF in no time! and wow, full term, wow!

Sorry I missed this update the other day! It must have been hard passing her EDD, what a mix of emotions that must have created for you. :hug:
Infinity I have absolutely everything crossed for you that she continues to improve, that her growth starts on the up and up again, and most of all that you get a very special birthday present and get to take your tiny princess home to be with your family at last.
:crossfingers:

:hug:

I hope that the Dr's have found a feeding regieme that is suiting Miss H and that you can start BF'ing again very soon, I understand how important that connection you gain through BF'ing really is, and how with a prem and in your case a very early premits significance is heightened.

I will still hold out hope for you that you are able to have her home for your birthday.
Sending lots of chubby vibes your little girls way :hug:
Take care and you have done such an amazing job for the last 108 days :comfort: xxoo

Evening all, thank you all for checking in on us. We've had a good few days and have a bit more certainty to a degree now which is great.

We are back to breastfeeding now which is fabulous. The docs didn't seem to think that cutting out the little bit of breastmilk made much difference at all to her output so they're happy for us to have one breastfeed a day right now which I'm happy with. They said breastmilk alone will speed things up for her in itself - its so easily digestible its just running through very quickly hence it will make her output more watery - but as the head of the unit said to me yesterday, its a nuisance but its not doing her any harm and its more important for my supply and her suck practice to put her on the boob every day. So YAY for boobies! Double YAY for boobies! She got on and sucked away with gusto! Normally we will top her up with a gavage feed of 30-40ml after a b/f just to make sure she's getting enough. After her breastfeed at 2pm this arvo she was bombed so I wrapped her up and we decided not to top her up and just see how long before she demanded again. She didn't wake until her next feed :o which was 4 hours later :o :o so I'm reasonably confident that my supply is good enough and she's feeding efficiently enough to get her fill. Although she was tired too after a bath and her dressing changes too so that may have konked her out too. But its a great feeling knowing she was satisfied for that long.

The little chubba is up to 2650grams and looks so healthy. Its lovely (and somewhat bizarre in many ways) to see her looking so big and getting chubby arms, cheeks & chin. She still has chicken legs LOL!

The big news is that she will be in surgery again next Wednesday (the 20th) when they will reverse the ileostomy and reconnect her bowel. The surgeon & doctors have concluded that her bowel problems were a result of the NEC and her prematurity and that she's had sufficient time to grow and rest her gut, so she will be all back in one piece next week. TBH when the surgeon told me that was her plan I was floored. I was truly expecting to take her home with the stomas, managing it at home for a few months yet, but not so. So, the surgery means another little trip to Intensive Care. She'll be intubated for a few days and need pain relief and lots of TLC. They'll rest her tummy and she wont have milk feeds for up to 5 days. Not sure how to deal with placating a hungry full-term baby who doesn't know why they're not getting any mik but I'm sure the nurses will help us through it. '

It means she won't be home for my birthday (which is the 30th Oct). But knowing that she'll have the surgery next week means she'll probably be home sometime in November. Once she's recovered from the op and goes back to SCN, its really just a matter of getting her suck feeds sorted and confident that she's gaining well and they'll let me take my baby girl home. And that light gets brighter everyday now. Its still going to be a long few weeks but we can do it. I know we can do it. I know she can do it.

Thanks again my friends, you're all absolutely beautiful xox

What a clever, chubby little Heidi!
All good news for the boobie feeds & reversing the stoma, she is absolutely on the path home. As always, you are all in our thoughts.... especially next Wednesday

What a clever, chubby little Heidi!
All good news for the boobie feeds & reversing the stoma, she is absolutely on the path home. As always, you are all in our thoughts.... especially next Wednesday

I haven't posted in this thread yet Infinity, but I have been reading it whenever you post and I just wanted to say how amazing I think she is - she is doing so well and I'm sure she will breeze through this next round of surgery and be home with you all very soon :hug:

Oh sorry for missing post other day! What a day to reach her EDD hugs, glad all is going so well! Go boobies!!!!

Good luck with surgery, she is doing such an amazing job that I am sure she will be home in no time.

Take care xoxo

Yay for boobies.... Hopefully she will continue to chub up with the feeds
It's great news about the surgery - it means she is strong enough for it which is a testament to her. Hopefully the recovery will go quickly and she won't be intubated for too long and back on the liquid gold
Have you been keeping a journal of this experience, apart from what's on here, and plenty of photographs? I apologise if you have mentioned it in here, but a friend of mine was hospitalised a lot as a child and the MIL disapproved of the mother taking photographs as it was no way to remember a child, but it is what makes them who they are... and no doubt Miss H deserves to know one day the emotions etc that were felt (I hope all that makes sense, i'm tired)
xx

oh wow Infinity!!!

:leap: for boobies!!!! I am so so happy for you that you are able to put her back to the breast again :leap:

I hope :pray: that everything goes smoothly with the stoma surgery next week, it will be wonderful to be able to take her home and not have to worry about the extra care required for the stoma site.

2650 grams is an amazing weight!! I can't believe she has nearly put on 2kg!!! She must look huge to you all now :D

I had been thinking over the last week or so how her weight was going and looking at DD2, and I amazed that they are both about the same size, DD2 was 2520grams last Thursday and she's a chicken legs as well, but she hasn't travelled such a long and difficult journey that Miss Heidi has.

I hope that you are still able to make your birthday special even if it is with an extra BF or extra lovely cuddles :hug:
Take care xxoo

wow infinity she has come such a long way. Hope her surgery goes well and she continues to go forward so you can take her home soon!

Been meaning to cone in here for a long time.

Fantastic news on the booby front. Great news

Sending much love for a speedy recovery from the op for your princess.

I'm sorry it doesn't look like DD will be home for your birthday but she will soon. And that will be another reason to celebrate

I'm so pleased that things are starting to fall into place now. :hug: hopefully not long now and you'll have your darling princess home with you where she belongs xx

Always thinking of you Infinity, and your amazing DD. :hug: So glad to hear of her progress. Wishing you all the very best for her surgery. :goodluck:

What a big chubba! :D
All the best for the surgery. It won't be long now and she'll be whole and home with you all :hug:

Woohoo on the weight gain and getting back to bfs!!

Will be thinking of you both as you lead up to her op next week and at least when you do bring her home you have one less thing to worry about. It's really a testament to what a great job you and her other carers have been doing that she's ready for the op so soon.

Yay for your chubba bubba & booby juice! A big turn around in her treatment for you all next week, sorry she won't be home for your birthday but it's great they are so pleased with her they are going to do the surgery. Hopefully ICU will fly by this time.
Lots a love xx

That's fantastic news Infinity! Yay for boobies!! And yay for the reversal op so soon too. She is such a little trooper that I'm sure she will come through with flying colours and be home with you in no time. She is doing so well with her weight gain too.

Goodness me, its been so busy for us. I haven't had time to breathe this week, never mind coming in here to post! Finally I find myself at home for an evening with some time to sit down. Ahhhh bliss.

Its been a very busy and interesting week for us. One of the more *interesting* paediatricians that runs the Unit has kept us on our toes for the past 5 days or so in relation to DDs surgery. Whilst her surgeon is ready to operate, this paed didn't seem to agree - so we've spent the last few days getting mixed messages, poor communication and lots of stress at the hands of people following 'hunches' would you believe. Essentially this paed wanted to let DD keep growing for a bit longer before they close her stomas. She had a few days last week where she stacked on lots of weight quickly and he though if we could keep her growing like that then we'd be mad to operate now. But those few days of growth seemed to just come out of nowhere and it was almost a fluke because it hasnt continued. She's gone up and down and plateaued again so that argument doesn't really stand anymore. Cut a long story short, today it all came to a head and after another small weight gain overnight the decision has been made to go to surgery this Wednesday as per the original plan. DD is ready, her stomas need to be in good shape and one of them is starting to prolapse out a bit so that's a risk to her bowel. Her growth is being stunted because of the simple fact that she has an ileostomy - once she's back together her growth should get back on track and we can't afford to see her weight remain static.

I've feel like I've been on this merry-go-round of opinion, advice, emotion all rolled into one. We really didn't need the diversion but I guess they're just being thorough. That's the way I'm looking at it through my delusional rose coloured glasses right now so that's ok LOL! I'm just glad we can prepare for Wed with more certainty now.

Didn't help either that some twit crashed into me in the hossy car park last week either. All her fault, she just reversed straight into my car while I was waiting for a park, despite me beeping my horn A LOT to alert her that I was behind her. Major pain in the bum but in the grand scheme of things it doesn't really rate a mention right now. My insurance co organised a hire car for me which has been a great help.

So keep DD in your thoughts for Wednesday. Unsure about timing as yet but we'll know more tomorrow when the surgeon & anaesthetists come round to brief us about everything. I'll try and pop in to let you all know.

Thanks all again xo

I'm sure she will come through the surgery just fine - she's already fought so hard to get where she is, and she is so strong now she's not going to let surgery stop her now :hug:

best of luck for wednesday - we'll be thinking of you all

Thoughts and prayers will be with you and Heidi on Wednesday. :hug:

what a big (and momentous!) day for you guys coming up! although no doubt nerve-racking it no doubt will also be a good step forward in 'normalising' this situation and getting her ready to come home... thinking of you all xx

that's such amazing, wonderful news!!!

thinking of you all, for Wednesday xoxo

:grouphug:

Will definitely be thinking of her on Wednesday - and you Infinity! Hoping everything goes beautifully and she can start packing on the pounds again.
Another step closer to taking her home for good :leap::loveshower:
PS. Sorry about your car, I saw that on FB :( You so didn't need that.

Thinking of you and your precious girl. I hope everything goes smoothly on wed.
:hug:

xox

Will be thinking of your little Heidi and you and your family on Wednesday. another step closer to home. Take care of yourself as well at this time.

I hope the surgery goes smoothly tomorrow and Miss Heidi's recovery is quick and gentle.

It is truely amazing to see how far she has come and hopefully this is one of the last big steps that she will take to come home :hug:

May the light continue to grow brighter and stronger everyday :comfort:

:wall: For the car accident :( Some people just never look.

Take care and you will all be in our thoughts tomorrow and the days that follow os Miss H recovers, although you are in our thoughts every day anyway! xxoo

Thinking of you and Heidi and hope that everything goes well tomorrow! :hug:

Will be thinking of precious Heidi, you and your family as you all take the next big step forward on your journey tomorrow.

Sending special thoughts, prayers, strength & smooth recovery vibes Heidi's way.

:hug:xx

Thinking of you and Heidi tomorrow... hoping it all goes perfectly.
:hug:

Sending Heidi all my strength and love for tomorrow. :hug:

Will be thinking of you all tomorrow.

Thank you all so much. DD will be go to theatre around 1pm, so early afternoon. She'll head back to NICU early tomorrow morning and start the prep for surgery. Poor little chicken has to fast from 6am :o and we've got to get briefings from the surgeon & anaesthetists etc. One of the Neonatal Consultants plus a couple of NICU nurses will go with her so I know that she's got loads of guardian angels looking after her. Knowing those people are with her is so comforting for me.

Thankfully most of the nasty things they need to do (intubate, put in central line etc.) will be done when she's in theatre so that will be less traumatic for her.

Just go back from hossy - gave her a nice long bath and changed all her stoma dressings, probably for the last time. What a journey this has been. I never ever thought I would learn all these things.

Anyway, we're going to try and have a reasonably relaxed morning. Get up around normal time, drop DS off to MIL & have a cuppa with her and play with him then head to hospital. I know like last time I'll manage to hold it together up until the point they arrive to take her away.

I will keep you all updated.

Just remember we're with you in spirit even when you can't keep it together :hug:

wishing you guys all the best for today :hug:

thinking of you especially mama at that moment she goes in...i can't imagine xx

Huge hugs for today. Xx

Sending lots of energy to Heidi, you guys and the surgeons today that everything goes smoothly.

:hug: