So we begin our NICU journey....

[Beach Mama]

Wow that is wonderful news Infinity!!!!! What a little trooper you have on your hands!! xox

[*Infinity*]

DD is still going really well in SCN. She's up to 2270 grams now which is great. They're still fiddling with her feeds to ensure she's digesting things properly. After a few days of very watery output they've switched her to a different elemental formula to hopefully make a difference which it has. Things are looking much better now and they're slowly grading her up to 3 hourly feeds. I am still able to breastfeed her, she just needs to have the bulk of her nutrition through the formula for the time being until her gut settles and her liver kicks in again properly, then we'll re-introduce EBM. Its frustrating for me, especially seeing I have an overflowing stock on the freezer but she needs to grow & absorb every bit she can and she can't do that effectively until her liver gets better. I just need to be patient.

I am planning on sitting down with one of the consultant doctors early next week to discuss my breastfeeding goals...I've not been shy about my committment to her having EBM and I will be asking them to work with me to achieve my aim of taking her home breastfeeding successfully. Of course with top-ups if necessary, but I really feel the need to be clear with them & remind them again. So wish me luck with that one. We manage one or two breastfeeds each day and she's a champ! Latches on nicely and just gets going, its beautiful. I am so so proud of her.

And I'm getting a bit more practice at changing her stoma dressings and bags too, with the help of the lovely stoma nurses at the hospital. They've been great. They love coming to see DD - they tell me they deal with grumpy old people most of the time so helping DD is a nice change.

I've finally got to a place in myself where I've felt comfortable buying some new things for her, little teeny tiny clothes....so precious. And of course I've got all boys stuff at home so looking for girls things is lots of fun

We are unbelieveably tired and still have a long road to go but finally, finally we can see a light at the end of the tunnel, and it gets a bit stronger every day.

Night all xx

[Phteven]

wow, you've traveled such a long road, it's fantastic to see that you're confident enough to buy her teeny tiny clothes. They must be so cute.

[shazzi]

I was checking the thread earlier today wondering how you were going. That is wonderful that she is improving and getting good weight gainsl. Hopefully the liver and gut will get sorted soon. It is great that you are going to have a talk to them about your breastfeeding goals. One of the paed's at our second hospital for DD just assumed she would be getting bottle and breast even though we had a sign on her cot saying "no bottle" and it really felt like he was undermining my desires. Luckily the nurses were more important in her day to day care and they knew I was committed to getting DD home fully bf with no bottles. I was paranoid about nipple confusion - i do not even know if it really happens, but I became obsessed. Obviously they need to take in to account Heidi's gut and liver but go for it.

Have fun getting her clothes. They have some great premmie stuff around, and they are soooo tiny and cute.

And get some rest too. You are so strong and doing a marvellous job
xx

[Fleur]

I was just looking at your ticker... 3months today
What a great post to read, I'm so happy for you and it must be so good to see that light at teh end of the tunnel

[*Infinity*]

I was just looking at your ticker... 3months today

I know! To think I would have been 39 weeks pregnant tomorrow as well kind of beggars belief. This journey is still tinged with a lot of sadness for me about the remainder of my pregnancy that I didn't get to share with DD but I'm slowly moving past that as she gets stronger & closer to home. As my wise, gorgeous, rock DP pointed out to me a while ago - it all feels so much worse because she's not home with me, where she belongs.

[*Beema*]

We are unbelieveably tired and still have a long road to go but finally, finally we can see a light at the end of the tunnel, and it gets a bit stronger every day.

I am so so happy that you are all finally being able to see the light that becons to take your amazing precious little girl home how ever far away it is we are here for you every step of the way and I know there will be a lot of tears shed that day xxoo

I am glad that you ahve all settled into the SCN routine, it can be such a big change from NICU. I hope that her liver improves and the amount of EBM can be increased over time, I am so glad you are able to still BF her, and it is fabulous to hear that you are putting your foot down and really pushing them so that you will be able to take home a BF'd little girl, it is a hard work with the top ups, expressing and BF'ing at home, but it is so very rewarding

Wooo Hooo for doing getting some retail therapy in, the teeny tiny clothes are pretty amazing especially when you hang them on the clothes line! DD came home at 2190grams and I had only bought 000 and a friend had given us one 0000, which I hadn't washed as I didn't think we would need it, in the end Dh along with our family and friends bought her clothes (which were a lot harder to find even just a couple of years ago) and the 00000 were too big on her, we used the PP teddy bear clothes, but they have a new Tiny Premmie range now which is just gorgeous!

Take care and thinking of you all xxoo

[thepixie]

More good news Infinity!!
I'm sure you will be able to get to full BFing in time... and for top ups you have a massive supply of EBM!
Great work and so happy to hear that you are feeling closer to taking your tiny princess home

[Ryatha]

so nice to hear how things are going, you have done so well and so has Heidi

[AngelPants]

Thats awesome news hun! I'm so glad to hear she's doing so well. Yay retail therapy is awesome, very good 4 the soul

[*Infinity*]

I gave DD her first tub bath today! So cute. And boy did she need it LOL she was very pongy and collecting things under her chins! We've given her sponge offs before but waited for her stoma wounds to calm down before a proper soak. And she really enjoyed it, very relaxed.

She's up to 2335 grams and they're moving her to 4 hourly feeds today. Which is a bit confusing (given you would expect a newborn to demand A LOT more than that all things being *normal*) but I'm fairly sure demand feeds are the next step. Happy to go with the flow. I talked to the doctors this week about my feeding goals and they're right there with me. Suck feeds at the breast is the ultimate goal for when she comes home but if we need to adjust that a bit to ensure her gut is ok and her growth is consistent then I'm ok with that. We're still fitting in a couple of breastfeeds each day and thanks to a nipple shield and the support of some wonderful staff in SCN I have managed to breastfeed PAIN FREE for the first time ever! Woohoo.

I'm getting much more confident caring for her stomas and I could probably do it all by myself if I needed to now which is a good feeling.

She will hit her 100-day milestone on Saturday. And I feel like I should mark it somehow - it feels a bit weird celebrating it, but its part of this road we've been faced with and I feel like I should be acknowledging that? Am I a bit nuts? LOL. Maybe I'll take some cake in to the SCN on the weekend. Everyone loves cake!

Thank you all once again for your support, it is lovely coming back to BB to reflect on all of this.

xox