So we begin our NICU journey....

[*Beema*]

Wow *Infinity* isn't Miss Heidi just an amazing little girl, I was completely over the moon to hear of her weight gain, it is sooo impressive that she is more than double her birth weight especially with all that she has gone through the past few weeks.

WTG Heidi for giving the CPAP the flick, clever, clever girl, stepping up to high flow is a big step, so proud of her and I love it when premmies dictate what they are ready for, I think they know what they want

You and your family are always in my thoughts, take care and sending you continued strength xxoo

[Liviam]

Absolutely fabulous news!! Your little angel sure has some spunk about her that's for sure!! Keep loving those cuddles.

[tan32]

so glad you got to have those cuddles again..

Well done Heidi , what a strong little girl you are. Great weight gain xxxx

[Rosebud]

Thrilled to hear that Heidi is doing so well with her weight gain and no longer requires the assistance of CPAP.

Enjoy your precious cuddles! and hoping that you can now see that glimmer of light at the end of the NICU tunnel.

Sending continued healthy vibes Heidi's way.

[*Beema*]

Just popping in to see how Miss Heidi is going

I hope you have all been well and getting some much deserved rest as well.

Thinking of you and Miss Heidi daily and hopefully the remainder of her NICU time is smooth and gentle xxoo

[Sally2]

I second Beema !
Well done Miss Heidi off CPAP, how weird is it to see their head ?!?!?!? Does she have lots of hair?

[*Infinity*]

Well done Miss Heidi off CPAP, how weird is it to see their head ?!?!?!? Does she have lots of hair?

I know Sal, its just beautiful to see her precious little head again, those CPAP hats are just so funny. She looked like a little garden gnome in it. And yes, she does have quite a head of hair on her...gorgeous fuzzy stuff that seems to be growing at a rate of knots! But she has a kind of 'punk' look after they had to shave each side around the temples - when she was sick they had a few attempts at getting a central line in and unfortunately the best access they could get was through a scalp vein.

Mixed bag today....she's up to 1800g and was almost up to full feeds of 11ml per hour. Yesterday when they tried to grade her up to two-hourly feeds of 24ml she decided to spill her milk back up. We don't think its related to the volume (they grade them gradually over a few feeds, they don't just whack down 24mls all of a sudden) we actually think she's a bit crook again. Well, I know she's sick, I can see it plain as day. She spilled a bit at virtually every feed after 11am yesterday so after holding a couple they decided to stop feeds overnight and give her 24 hours rest. She's looking quite flat & lethargic too, and her colour is a bit off so they're watching her closely. I don't think its as serious as her last hurdle but we just have to wait & see really. They'll decide in the morning whether they re-start feeds ever so slowly. I just hope she doesn't crash as seriously as she did with the NEC, but given how serious it was they're going to tread very carefully with her. The good news is that she's mainly in air & saturating well, she is requiring virtually no oxygen. And even being a bit sick, this has remained stable. Usually if these little ones are going downhill fast then they require a lot more oxygen and struggle with respiratory function at the same time, so I'm hopeful she's going to ride this one out quickly.

And although she is growing, she's not really growing enough for her corrected gestation. Due to being fed with IV nutrition for so long as a result of the NEC her liver function has been somewhat impaired and is slowing her down a bit. They are waiting to decide how to tackle that issue, but are obviosuly keen to get her on full feeds when she tolerates them enough.

So more wait & see, hope like crazy she keeps moving forward. We're up to day 64, and she's now 9 weeks old so 34+6 corrected. They always say keep her original due date in mind as to when you *might* go home, but to be honest, I think we're going to be there a little longer than that. I think the growth issue is going to impede things for her, particularly if she stop / starts with her feeds like this. We've been in NICU a looooooong time, I can't even see her being ready for SCN anytime soon. Just feels like a lifetime away right now. One foot in front of the other, one day (or one hour) at a time, she will get there in her own steam. I'm exhaused but I guess that just comes with the territory.

Night all x

[tk1999]

the light at the end of the tunnel shines quite dimly sometimes

We were only in NICU for one day and then SCN for 2 weeks and at the time I felt like that was never going to end. I got talking to some of the mums in the expressing room who were NICU LTers and hearing the hurdles they overcame and were continuing to fight was such an inspiration to me.

You are also an inspiration... thank you again for your updates. I think of you often.

Heidi sounds like a little darling. Stay strong little one xoxox

[thepixie]

1800g.... she has come such a long way, must be time for another party at 2kg
I hope she gets over this little hump quickly and starts to build up her strength again.
Being off CPAP is a huge step. I think Heidi will surprise us all and be home around her EDD.... She is such a fighter and doing so well.

[*Infinity*]

Well we're back on the down side of the journey again. Unfortunately the NEC has returned. Her tummy worsened overnight and its definitely back. DP just rang me from the hospital after the doctors spoke to him, he was in tears. I'm at home, DS is sleeping. I'm cleaning, trying to keep my mind off things. We're unsure as to what the plan will be this time. They're going to try and establish an arterial line this morning. Thankfully they didn't remove the central line in her scalp - they left it in just in case. So they don't have to put her through that again. We'll find out more over the next few hours. I'll drop DS off to my sister so we can head down together. I dare say they'll want to ventilate her again to keep her safe. I just really don't know what to say or do right now. I'm kind of numb. I need to have a big vent - this shouldn't be happening. I should be pregnant with a big round belly. I shouldn't have had the privelidge of meeting her yet. I should be planning to birth my baby in the comfort of my own home. She should be nice & snug on the inside and not being put through all this awful, painful stuff. I just don't know anymore.

[dusty]

Oh Infinity I hear your pain and it is so unfair. You have been so strong when you probably just want to cry. She is a tough cookie and I'm hoping with some assistance she will quickly pull through this current rough patch and show you just how tough she is. You deserve more happiness right now, I hope you and your DP can keep it together for each other and your DS and DD. Much love and hugs xx

[skybie]

infinity, have been following ur journey. Just wanted to send you some love and strength.
Heidi is a strong little bugger and she will get through this latest set back.
i cant even begin to imagine how hard all this is to deal with.
Be strong, be positive, one day you'll have ur growing girl at home with you and this will all be a distant memory.
Will pray the NEC goes away as quickly as its come on
xxx

[Janie]

What a journey you are all on . I hope you get to spend as much precious time with Heidi and your DP as possible today, and that she recovers very quickly from this latest bout. Thinking of you xoxo

[*Beema*]

Oh hun

Keeping your family and Miss Heidi in my thoughts and prayers, my heart breaks to hear she has NEC again, it's not fair here for you hun for a hug, cry, vent, or just to listen.
Be strong Miss Heidi, we are all behind you little Miss, sending you all our strength and courage to fight this battle xxoo

[MistyFying]

Infinity I feel for you - it's so hard. Hope Heidi has a better afternoon.

[MantaRay]

hun. I am so sorry that you are going through yet another difficult patch The NICU rollercoaster unfortunately is a long and trying journey. I know this from my friend who has a healthy 4yo that started life as a 24w+2 premmie. Despite the fantastic result, I wouldn't wish the stress of the first months of his life on anyone. I so wish that you had the start to motherhood that you were expecting

Infinity, I don't know that any words will make today easier for you, but try and hang in there. Heidi has been a fantastic fighter so far, and after such great weight gains she is in a stronger position to face this next challenge. You are all in my thoughts and prayers hun, I hope there is better news soon

[onthefly]

Oh Infinity. I'm so sorry you're facing this again

[Sally2]

You are right, that is sooo unfair. She should be safe in your belly and instead she is fighting for her life again. There is nothing that will make this okay, it's just crap. I am sooo sorry you all have to go through this again. Heidi is a tough little cookie though, so hopefully with a bit more weight behind her this time, she will come through it AOK.
Thinking of you, as always....