So we begin our NICU journey....

[*Infinity*]

Evening all. We've had a great few days with Heidi progressing really well. She is continuing to gain weight....latest weigh she was up to 830g! WOOT! And she'll be weighed tonight so I'm hoping for another increase. She is now on 2ml of EBM every three hours and seems to be tolerating that ok so far, but they're constantly monitoring. Other than that, no major changes. She received a blood transfusion during the week which was expected and was fine. Its so hard seeing our tiny girl with a canula in her hand though, it was almost bigger than her.

We've shared a cuddle each day this whole week, I even got two yesterday - one in the morning and another when I went in to be with her again at night. She is so settled when she's on my skin, its really lovely time together.

I'm getting tired but trying to maintain the juggling act. Poor DP & DS have had hand, foot & mouth disease so they've been a bit miserable and DP isn't visiting at the hossy for that reason. Thankfully I'm fine. I keep figuring that my body just knows that Heidi needs me with her, so I'm not going to succumb. But I'm watching for all the signs.

My supply seems to be stabilising nicely - I'm probably expressing between 400-450ml each 24 hours for her. The milk room at the hospital have told me to start freezing some at home rather than taking it all to the hossy right now. They've got plenty there for her needs right now. I cannot wait until she is old enough and ready to start having a go at proper breast feeds. I know it will be some time and a slow journey but instinctively I can't wait to share that with her.

Good night all xx

[ElleJay]

Great to hear about the weight gain!
I bet you can't wait for long cuddles and longer feeds

[Jennifer13]

The photos sound gorgeous, Infinity. I hope you are able to share them with us when you get them back. What a lovely idea! for today, it sounds like you're having a tough week.

[Cassius2]

big you guys are doing amazingly! and what a trooper with her weight gain!

LOVE the idea of the photos! how amazing to be able to look over them and share that with her.

[*Beema*]

I am so happy you will have some amazing photos of Heidi and your whole family of her early days in NICU and I would love to see them when you feel ready to share, the photographers are just beautiful, compassionate and caring people and their work is just amazing

900grams is a pretty amazing weight and she is doing really well, especially being stable after her big gain a few days earlier.

I hope you have had a chance to get in a little R and R and timeout, I second the laptop when expressing, I used to fall asleep infront of the tv and then spill milk
Take care xxoo

[onthefly]

The photos sound beautiful!
Sleep well - all the best for the next 5 days.

[*Infinity*]

I second the laptop when expressing, I used to fall asleep infront of the tv and then spill milk

Beema, you made me giggle about spilling milk! I do have moments even during the day where if I close my eyes when I'm pumping I'm sure I am close to nodding off!

Thank you all for the encouragement. This week has been very busy but we're going ok so far. DS has been happy with his Nanna's so I've been able to get to the hospital when I need to and try and keep the home fires burning a bit too.

Heidi is going well. She went up to 925g and will be weighed again tonight so here's hoping for another gain. Its been a rollercoaster though. One day I'm in a good frame of mind and the next will be a day where the slightest thing will start to eat away at me. I think I'm going to end up going slightly nutty, but oh well, who cares LOL.

The doctors are watching DDs lungs quite closely at the moment. She is starting to develop a small degree of what they refer to as chronic lung disease. Sounds a lot worse than it actually is for her (which is one of the things I'm trying to be rational about). Its essentially a diagnostic line in the sand for them - if by day 28 a prem is still needing some degree of oxygen then they classify them as having chronic lung disease. Heidi will be 28 days tomorrow and over the last week she has needed small increases in her oxygen levels, but thankfully not too much. Its kind of expected for a baby born at such an early gestation, but it sounds so awful. Those three words have really thrown me this week. Despite talking it all through with the staff, I still have my worrywart pants on and my anxiety levels are increasing. Most babies grow out of it over the coming months as the lungs continue to develop until kids are 5 or 6 apparently. So as the lungs grow new healthy tissue, it takes the pressure off the tissue that has been damaged as a result of her prematurity and the ventilation etc. So here hoping she doesn't deteriorate any further.

Just to add to the stress, the poor little boy who has been in the cot next to her is VERY sick. He's been hit by some major infections & going by the looks on the nurses faces, I don't actually know if his prognosis is positive at all. They told me today that they'll proactively test the babies that have been in NICU near him (including DD) to watch for any early signs of the same infection. So again, fingers crossed she manages to avoid that. The staff do their best in terms of hand washing and de-bugging but when they share the care of all the babies, there is still a risk of something being transmitted. I actually feel really sad about this little boy - his parents have had him removed from their care and he has no one, and now he's so sick. Breaks my heart.

Earlier in the week I was ready to throw all the monitors out the window - everything goes beep A LOT and all I wanted was a quiet, uninterrupted cuddle with my baby girl - and I was really annoyed and frustrated that its going to be a long time coming. I just try and zone out as much as possible. Today we had a good morning - I washed her and helped change over all here tubes and leads which they replace every 7 days. Did all her nappies and changed her sheets & nest. The more I get in and do for her, the better it makes me feel. Makes me feel more like her mum.

I've also posted her birth story too if you want to head over and have a read. It was nice to write it all down while it was still fresh.

xx

[Arimeh]

Its a great birth story honey - and your little girl is such a fighter. I hope she grows stronger every day.

[Little Chicken]

Earlier in the week I was ready to throw all the monitors out the window - everything goes beep A LOT

I know exactly what you mean. I used to work in a NICU and yes they do get to you after a while, but believe it or not, you will be able to zone them out after a while.

[ElleJay]

Great to hear about the weight gain!
I bet you can't wait for long cuddles and longer feeds

[Janie]

Wonderful news hun! So so happy for you that Heidi is doing well, and that you're doing so well with your expressing! I know it's not all sunshine and rainbows, but it sounds as though you're doing a wonderful job of enjoying the special times you are given. Keep on hanging in there, thinking of you lots

[*Beema*]

Wow what a wonderful supply you are generating

Wow I am so happy you have been able to have so many cuddles it is amazing to watch their sats settle when they are getting cuddles such special moments awwwwwwww.....

Oh no Poor DH and DS How long does it last for? I wish them a smooth and quick recovery, they had a breakout at our Daycare centre a week or two ago, lucky DD didn't get it.

Is the hospital giving you the containers to store your milk? If not the avent one's with the blue lids are great, I have some of the bags too, but cheaper to buy them on EBAY.

Take care hun and thinking of you all xxooo

[onthefly]

Wow, you're doing so great! The both of you I mean.
Sorry to hear about your DH & DS - hope they're better soon.
You must be exhausted - I hope you are able to take a little time out each day to just breathe

[Cassius2]

wtg on the expressing! that is a pretty impressive amount!

and *mwah* on the cuddles!!!!!! they must be the BEST moments!

hope your DH and DS are holding up ok. heard that it is quite ouchy. it was rife through DDs kindy last year.

[*Infinity*]

Well I'm pleased to say that DP and DS are all better, DP is down at the hossy tonight seeing Heidi for the first time in about a week. Beema - apparently they're infectious for 3-5 days or until the blisters heal up. Its been really tearing him up not being able to see her but he was so paranoid about going in sick. I *thought* I was coming down with something too but appear to have fought it off with a bit more rest. Marcellus, you're spot on, I am exhausted but I'm too scared to stop right now in case I don't get going again LOL! This week is going to be tough as DP is back at work 4 full days so it will be a juggling act with DS and I just have to accept I can't be at the hospital quite as much each day. Very hard. Thankfully DS has been his cheery happy self this last week after getting over teeth, constipation and HF&M. He also started walking during the week so do you think he's proud of himself much! Its so much easier for me emotionally now that he's back to his resilient self.

Beema the hossy supply us with little Medela containers that are compatible with their pumps as well as mine at home. So its really easy. I just take the milk in each day and pop it into their fridges and the milk room nurses take care of freezing and storing it and preparing the feeds for all the bubs each day. I'm really impressed with their set up, it would be so much more stressful if I was having to manage all that myself here at home. One less thing to worry about. And I'm also really happy that they're so supportive of the importance of breast milk and breast feeding, as they should be of course.

DD continues to do well, she's been shifted into a new cot, still enclosed in heat but a little step forward. I got there a few days ago after they'd changed her over and had to take 5 minutes to adjust - you get so used to their set-up and something changes and it messes with you a bit! More impressive weight gains too - they weigh every 48 hours - so 2 days ago she went from 830gms to 815gms but she was weighed on different scales so a bit hard to know if it was a true loss. Then last night she went from 815gms to 905gms! A huge 80g gain which is amazing. I think we'll have a party when she hits the 1kg mark LOL! She is tolerating a tiny bit more milk now and her poos have changed so we think her gut might be responding a bit better.

Every day is full of new information and challenges. Today she had her heart ECG done again. The docs and nurses keep thinking they can hear a little heart murmur, but it appears one day and then it will be gone the next. So they repeated the ECG and confirmed that her heart is fine. They're concerned that the little ducts in her heart haven't closed over (which they normally do at birth when a baby takes its first breath). Often in premmies that same process doesn't occur. So far so good with that. At 6 weeks she'll have an eye exam to see if her eyes are developing normally - sometimes if the little vessels around the eye start to deviate as they grow they need some laser surgery but its highly unlikely that will be the case. There is truly so much along the way we'll learn that we never even would have considered before.

The poor little chicken still has one little eye that the bruising hasn't resolved. She was so swollen and bruised at birth, but almost all of that has resolved apart from her left eye. She looks like she's been in a fight! Hopefully another week or so and that will be gone. Its kind of like her birth battle wounds in a way! We have also brought some visitors in during the week to meet her. My sister came through one night and then Heidi got to meet both her nanna's last night. We weren't ready for visitors early on, even family, and they've been very understanding about that. But boy were they chuffed to see her. She's got so many people that love her and are cheering her on, its really heartening for us.

Night all xx

[onthefly]

So wonderful to hear your updates. I'm glad your DH and DS are better now.
Get all the rest you can hon

[*Beema*]

I am so glad that DP and DS are all better I bet DH couldn't wait to get by her side

Woo Hoo for the walking too, what a clever little boy!

That's great, the WCH wasn't so great when we were there, we had all the equipment we used the Ameda pumps, but we used sample pots to put the milk in, we could store some on in post natal if you were still there or in NICU/SCBU fridges. NECH was much better as I had NUK bottles that hooked onto the pump and we could put the teats on them as DD had a mixture of NGT, Bottle and BF.

How exciting that she shifted into a new cot, it is a bit scary when they shift them around, especially when you walk up to where they were when you left them to find that they aren't there any more :shock:

What some fabulous gains, the 1 kg mark is coming up quickly all of a sudden, great to hear she seems to be coping with the extra milk and gut is coping, they are big steps for a little girl

Take care and enjoy showing her off, even if it is to just a couple of people xxoo

[Sally2]

Awesome update Infinity and wishing you all the best when you can't be in at the hospy as much as you like.
We always said how much harder it would be having a tiny premmie with another bigger kid at home, the juggling act that would have to go on

Big big hugs for all of the ups and downs of life in the NICU, we think about you and little Heidi a lot and hope all is well. for the courage you are all showing in a really, really, really hard situation. Big hugs for your hubby who was too scared to see his little girl in case he made her sick, just because I remember how full on it all is

Enjoy showing her off, it makes a lot of difference when you bring her home and the important people can remember how small she started out and can appreciate how far she has come! I bet she is beautiful!