So we begin our NICU journey....

Hi all

DDs post-op recovery is going really well. Today she has ceased her antibiotics & morphiene and apparently overnight she has been farting like a trooper LOL which is a great sign the gut has woken up again. Apparently if the bowel is handled is shuts down, so they need to give it time for the normal peristalsis to recommence. They can hear lots of bowel sounds too. She has re-started feeds this afternoon - a whole 15mls! But its really just to test that everything is functioning ok and if so they'll start to grade her up to full feeds over the next 2-3 days. Poor little chicken was getting very hungry. I alsmot got her back on EBM but the surgeon came in and over-ruled the paed this morning. She wants her to establish full feeds again on the elemental formula she was having prior to surgery and then start re-introducing breast milk. I'm disappointed but not surprised. And I just don't have the energy to weigh into a debate with them - I'll let them fight it out at their level. Realistically she'll be breastfeeding & on EBM again in the next week so why should I push it just for the sake of it now? The surgeon's reasoning has sound logic to it so its not like they're feeding me BS, its just hard when she's not having my EBM. More of an emotional thing for me I think.

Typically, the central line they put in her scalp post-op tissued so they removed that and got another one in her left arm on Friday. Fingers crossed that holds for the next few days as she needs to stay on IV nutrition until she's back on full feeds. Nothing like a trip back to NICU to remind you just how 'intensive' it all really is.

Thanks all for your love & support xx

What an amazing girl you have Infinity! Awesome to hear it is all going so well :hug:

Oh she really is amazing

Oh she's going great guns!! She's going to be home with you and exclusively BFing before you know it :hug:

What great news that she is recovering so well hun :hug: You are both doing a fantastic job of fighting and being strong. I am so glad that you are one big step closer to having her out of NICU.

What an amazing little girl you have! Wooooo Hooo for farts!!!! That is wonderful news :dance:

She is really showing how strong she has grown over these months and I hope the wait to BF again is short and you will be enjoying that lovely special bond together :loveshower:

A friend had just explained that to me the other days after her bowel was nicked during an E C/S, she had to wait for it to "wake up" again before she was able to eat.

Take care and we are so proud of all of you, you have all gone through so much :hug: :comfort: xxoo

Such fantastic news your little girl is going great guns. Farting is a great indicator or how strong and determined she is!

I hope the line stays for as long as needed too. It's heartbreaking seeing them put in.

She is doing so well. You must be a very proud mummy.

beautiful news that she powered through the op! :dance:

i hope you both get in some good rest for this final leg of the journey...you guys have come so so far, it's amazing xx

Hope the weekend has gone well and you've been able to use more of that precious EBM now. :crossfingers: Is Heidi out of NICU this week, or will she stay in for a little while?

:hug: to you, this has been a long, long road and you must be exhausted.

Thanks Jen, DD is still in NICU at the moment but won't be long and she'll be back out to SCN. Today they took her off monitoring and her feeds have increased to 45 mls every four hours or a bit in between if she's really agitated. They're still taking it nice & slow for her. Once she's established back on full feeds she'll head back to the nursery. And she's off her surgical cot and back into the normal plastic bassinet thingys. So it won't be long. She is still sooooo hungry though. She was very vocal about it last night. Poor little mite. I'd be angry too. Lots of lovely smelly poos too which is gold.

The problems with IV access still continue. Her central lines and peripheral IVs are lasting 24 hours max if we're lucky - her veins keep tissuing which is acutely painful for her and just means they need to find more veins to re-insert. IV access is still critical for her at this point in time until she's back to full feeds. She has been notoriously hard to maintain IV access with since she was born. They find some babies react particularly badly to the foreign body in their veins and also the concentration of the IV nutrition & other drugs is quite high which irritates the veins. But we should only need them for 3 or 4 more days.

I dropped my bundle big time yesterday. DD was crying in pain because the drip in her foot had tissued. She was starving on top of that and just crying the house down. I was doing everything I could to comfort her and doctors and nurses were everywhere. And I just sat down with her in my arms and just cried. Its so hard when there is nothing you can do and even a cuddle won't work. And I am endlessly frustrated that they have to keep stabbing her to get more veins. So I just had to let it out. They were all wonderful, lots of staff just hugging us reminding me that it will all be over soon. That we're close to the finish line now and that letting it all out just means we're starting to get close to the end. We've formed such a bond with the wonderful team there, particularly in NICU. They have been angels.

Its my birthday this weekend and I was hoping that DD would be off monitors and in a mobile bassinet - we'll take some morning tea and have our own little celebration together at the duck pond at the hospital. I'll keep you all posted about how she goes in the next few days.

BTW - she's 4 months old today. 4 months. How unbelievable is that.

She's doing a marvellous job Infinity, dealing with more than most people could ever imagine
:hug: enjoy your birthday this weekend with a cuddle and hopefully a breastfeed xx

Miss H never ceases to amaze me - she is truly precious!

I hope she is up for the duck pond visit, that sounds perfect!!!

I can't believe she is 4 mths already - OMG. What a trooper :). Happy 4 mths Miss H!

xoxoxo

She's doing a marvellous job Infinity, dealing with more than most people could ever imagine
:hug: enjoy your birthday this weekend with a cuddle and hopefully a breastfeed xx

FOUR MONTHS!!!! no way!!!!!!!!!! Has it really been that long? Well it's only Monday, so I reckon she has a fighting chance of being off the monitors by the weekend :hug:

:hug: It sounded like you were close to 'letting it all out' in your previous post. It sounds like you finally feel free to consider your own feelings and you have had so much to deal with in the last four months.

Poor Heidi, so hungry and no Mummy's milk to fix it. :( I hope that things are improved with the extra feeds, but how good is it that she was being so demanding so quickly?! She's certainly letting everyone know what she wants. ;)

I was in tears reading your update :crying: for so many reasons - because she's amazing first of all and is doing so well. But also for you having to watch her go through the pain of having IVs inserted and reinserted, of her crying with hunger in your arms and nothing you could do but hold her. Because of the toll this has taken on you. Because her homecoming is so close and still seems so far. Because she is four months old (wow) and yet not home with you all. It has been an unbelievable and harrowing journey for you all and I don't know how you have been so strong. I guess we can see where Heidi gets her fighting spirit. So much love to you all as you get her closer to home. Thinking of you for your birthday too and hoping you get to have a special day out with her :hug:

Wow 4 months already. You have been a super duper mummy through all of this. Hopefully you will have her in her mobile cot real soon and she will be rid of the IV. Hope you get to have your special day with her by the duck pond. Will be thinking of you and your family.

DD is completely free of monitors and IVs now! YAY for not being hooked up. FREEDOM. I think she knows too because the last 24 hours she's been so settled. And we are exclusively suck feeding now....nasogastric tube got pulled this morning and she is on demand feeds with a 4 hourly limit. And she can have as much milk as she wants. At her feed this morning she took about 80mls quite easily. Still drinking the elemental formula but the surgeon only wants her on that for a few more days then we can start re-introducing EBM and breastfeeds. She will move out to SCN whenever they need the bed space in NICU so I'm expecting either this afternoon or maybe tomorrow. She's got all her pretty clothes to wear again now and just looks beautiful with NOTHING AT ALL stuck to her face, arms, legs, body. Its the first time really we've had her this way.

And once she gets to SCN its going to be all about establishing breastfeeds again - once they're confident that its all going well and she starts to re-gain weight, I dare say we'll be out the door. So maybe 2-3 weeks I think. But I don't want to get too far ahead of myself. She's already dropped over 100grams after surgery so she really needs to get back on top of things and consistently keep gaining.

Thanks all xo

That is AWESOME news! I bet there were loads of pictures taken to mark the occasion too :hug: I think it might be time for you to start getting ready for her to come home, because if she keeps going as well as this she will be home before you know it!

woo hoo - yay for no tubes at all :dance:

I'm so glad she can wear all the pretty clothes you have for her.

What absolutely fabulous news!!!

That's absolutely fabulous news!

Fantastic news! What a clever poppet she is :). I think the staff are right, you only drop your bundle when you know the end is near........your crying brought me to tears, but it was probably really good for you to let it out.

Thinking of you lots :hug:

She never ceases to amaze me.... :leap: It must be so good to be able to see her beautiful little face without tubes and pick her up without wires and monitors.
I'm sure she will go from strength to strength and be home with you very soon!

Awwww pretty clothes to go with a pretty girl! How wonderful to have her to hold without any attachments. And no wonder she's been complaining so much - losing 100 gms. GL with reestablishing bfing, I hope it goes well. Moving day soon and not too long afterwards a very big moving day - home! I can't believe how far you've come and you nearly have her all to yourself. :cheer:

Wow she is just the most amazing little chicky hun!!!!! Wooo for pretty clothes and no tubes xox

Excellent news!

YAYAYAYAYAY, dancing around the house! Clever, strong, precious Miss Heidi! No tubes, no wires, no monitors, just like a NORMAL BABY! Oh my gosh, I am sooo excited for you! What a massive journey, no wonder you are breaking down as you can finally see the light at the end of the tunnel!
Good luck with the boobie feeds, I know she will be keen to get on there & get her Mum's milk into her little belly :lol:

:leap: :excited:

Woooo Hooooo!!! Happy tears her for you tonight hun :D

To see your baby completely tube and wire free must be just truely amazing! I bet she looks gorgeous back in her pretty clothes!

Some fabulous news with the feeding as well, I am so excited for you :hug: I am so happy that she is getting to be able to have the chance to act like a baby, demand her food and enjoy her booby :)
I hope you have a lovely trip outside for your birthday :hug:
Take care xxoo

Yay for NO monitors!!! I'm so so happy for you!!! Go Heidi!!

What wonderful news!

:leap: That is awesome news Infinity :leap: What a strong little girl you have there!

Hang in there Hun :hug: not long now. Hope your Birthday is just perfect and the sun shines brightly so you can spend some special moments outdoors with your beautiful family xx

That's fabulous news infinity. Congrats. Go go go Heidi

Hold the phone ladies & gentlemen......DD is coming home. When you ask....? TOMORROW. Yes, you heard right, tomorrow. Sheesh they move fast.

Yesterday I got to the hospital and the team were up to DD on the ward round and they told me that they're thinking about home sometime soon, possibly the weekend. Later in the day they suggested Saturday which was even more kooky as its my birthday! So we start planning and getting our heads around Saturday, then today we arrive and they suggest well maybe Friday instead would be ok too. As the paed said today, they're really struggling to find reasons to keep her there right now. She's regained her pre-op weight (went up 105g at her weigh last night) she's on all suck feeds and all her bloods, electrolytes etc look normal. The surgeon is happy with her wound and recovery. And there is nothing they're doing for her in the unit that we can't manage ourselves at home.

:o :o :o :o :o :o

To be honest I'm still getting my head around it. We're in a complete flap trying to get organised LOL! Had to race out and get a capsule, some newborn nappies etc. I feel so disorganised but I'm not really caring right now. I can bring my baby girl home. For my birthday of all things too. If I sound a bit all over the place its because I am! I am just flabergasted. I don't think it will sink in until we walk through the door at home with her.

And we're back on the boob too - a couple of breastfeeds a day with a top-up and the rest are demand bottle feeds. Over the next week with the help of the outreach girls we'll gradually increase her breastfeeds and get her back to EBM top ups too. She has developed a distinct preference for the bottle but she's still keen for boobies too so we just need to keep the practice up and persist. I know we can do it. She had a great breastfeed last night & this morning which was good.

So, if I'm not in here much over the next week or so, you know why! I'll be soaking up my baby girl at home. I will try & pop in tomorrow night and let you all know that we're home safe & sound. I think I'm gonna cry.

:leap:
I'm so excited for you! Heidi is coming home!!!
All the best for her homecoming - I hope the coming weeks and months are wonderful

Wonderful, joyess news! Enjoy every second....you so deserve a happy homecoming - :leap: Congratulations Rach xx

That is fantastic news!! I am so happy for you guys.. I hope everything goes smoothly

I've been stalking this thread and i just want to say WTG Miss H! comming home for mummies birthday! :leap: best pressie!
and im honestly in awe of you *Infinity* and your strength.

Tears of happiness here!! What an amazing birthday present to have your precious little fighter home with you.

Enjoy every moment. Wonderful news that your DD is doing so well xx

OMG!!! That is the BEST news!!!! How wonderful you will have your bubba home for your birthday. It's truly a testament to both your strength and determination. AMAZING!!!!