So we begin our NICU journey....

Wow Infinity, so much has been happening. Congratulations on your DS's first steps. A big WOO HOO for the huge weight gains for little Heidi. All the medical tests are so necessary and good to find out but so stressful. Great news about the ECG. My DD had a heart duct that did not close and required an operation at 12 weeks old. Just adds extra stress that you don't need to know of further treatement.

Our hospital expressing containers are now used for spices LOL.
Hope your week goes well adjusting to your DH being back at work. It must feel good to be sharing Heidi with your family now. xx

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

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

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 :D

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

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 :juggle:

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. :hug: 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, :hug: 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!

Thank you all for your encouragement & support.

Sal - I hope you guys get to take Archer home really soon. I gotta say it is SO SO tough doing this with a toddler in tow - talk about feeling torn to pieces. But we're coping.....just. DP is working 5 days in a row from tomorrow now, so I have my mum and the MIL lined up to be with DS for part of each day so I can get some time at the hospital with Heidi. At least if I can make it in for a few hours each day I think I'll be ok. We'll see.

Heidi's weight has remained stable, she dropped 5g down to 900g last night - at least stable is good. They're increasing her EBM feeds but are now perfusing them over an hour or so rather than giving it all to her at once. As she's gone up to 4 or 5mls each time she's started to get a bit refluxy and she's dropped her oxygen levels so they're hoping this is a gentler option to encourage things along.

I do have more to post but don't have the energy right now so I"ll come back in and let a few things out tomorrow I think. Its hard when you hit a wall and don't know where to go.

But I have to say a huge big thank you to the gorgeous Beema for giving me a contact to have some professional photos taken of Heidi while she's in NICU & still so tiny. We had a lovely lady come in this afternoon and take some shots of DP, DS & I as well as some photos of us having a kanga cuddle too. We felt really special and I'm so pleased we'll have the beautiful memories of her early weeks in photos too. She'll look back on this when she's older and not believe it all!

Good night xx

What a lovely thing to do! In a few years you will be showing Heidi the pics of her as a bub and explaining how little she was, and what a fighter she was, and how good those cuddles were!

Thanks for updating, hope you get a good sleep and re-energise.

take care,

kate

Good luck on your NICU journey, you are doing well with expressing! Its so so hard to get up at night to express, i suggest jump on the computer to pass time while your expressing! Worked for me, i also discharged myself after 24 hours, i felt bad for a couple of days but i would never sleep in them so i know where your coming from! Shes a little fighter, good luck darl!

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

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

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

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 :hug:

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

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

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

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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

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

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.

It was wonderful to hear about your family photos, would have been one of those very special moments.

Yay to Heidi on the continual weight gain. :hug: Hun, it is a tough journey and yes you do feel as if you are going nuts but try and be gentle on yourself. I found having a NICU buddy helped a lot, sometimes family & friends just didn't understand.

Certain events often resulted in oxygen increase with DS. Things such as increased feeds, eye tests, additional blood tests and immunisation which they do at actual age and not corrected. Fluid retention also plays a big part in it too. Sometime it was also a flag for a well needed blood transfusion. Has Heidi also been spending time in air?

In a few weeks you will become oblivious to those horrid beeping monitors....Oh how your updates are bringing back so many memories.......

Thank you for sharing your birth story with us xx

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Certain events often resulted in oxygen increase with DS. Things such as increased feeds, eye tests, additional blood tests and immunisation which they do at actual age and not corrected. Fluid retention also plays a big part in it too. Sometime it was also a flag for a well needed blood transfusion. Has Heidi also been spending time in air?

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Thanks for your support Rosebud. Heidi was in air for the majority of her first 2-3 weeks which was amazing. Its only been this last week that they've seen her oxygen needs increase, and I do sincerely hope its just due to transient things like increasing her feeds etc. She also wiggles a lot so sometimes her de-saturation is simply due to a bad trace on the oximeter. She is always pink and lively though and they encourage us to look at her, not the monitors. Hard to do when they beep so much.

She stacked on 55 grams over the last 48 hours which is great - she is now 980g in total, so almost pushing the big 1kg milestone! I think I'll throw a party when she hits that one. She is taking 6mls of EBM each hour, still being perfused slowly which she is tolerating a lot better and she is pooing like a trooper now which is a good sign that her gut it kicking in.

I'm tired, got a million things to try and keep on top of, but I'm doing my best to get the important things done and just forget about the rest.

Awww Heidi is doing SO well! Stacking on the weight!

It's such a hard journey, but so very much worth it in the end.

Thinking of you

Heidi sounds like she is doing everything that a baby of her gestation should be doing, which is great! It is unfortunate but normal that she may require oxygen around this time, and that her saturations might start swinging as well. The nursing staff should be only noting the true ones and not all of them as, like you say, some of them will be just purely the monitor not picking up properly. Be assured she will grow out them as well as that oxygen need. Is she still on CPAP or is she breathing completely unassisted now? We used to jokingly tell parents that when they reached a kilo we required a kilo cake. :) Put yourself and your family first, everything else can wait. Good luck with everything.

My first night in the SCN I thought I would be hearing beeps and blips and buzzs from then until the 10th of never... I can't remember when I stopped hearing them but I remember thinking it was awful quiet in the SCN and the family member I had with me said "how can you say it is quite with all that beeping from the machines"

So many memories flooding back for me. I think of you and Heidi often

:cheer: 980 grams :o WOAH!!!!!! :cheer:

WTG Heidi!!! :leap: It seems that she had just all of a sudden stacked on the weight, just amazing and I am glad that the adjustments to the feeds is really helping :)

Great post Rosebud, some great information in there :hug:

It is hard to forget the machines that constantly beep, freaked me out when N's started going off the first few times, but you do get used to them, but there is still that fear when they do. And the memories flood back every time DD goes back in, and she is generally hooked up to Oximetry most of the time and that goes off a lot....

Take care and sending you strength xxoo

Wow -980 gms!!! And up to 6 mL feeds sounds like so much when you were talking about a mL at a time such a short while ago. Your milk must be really full of all the good stuff. :hug:

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Wow -980 gms!!! And up to 6 mL feeds sounds like so much when you were talking about a mL at a time such a short while ago. Your milk must be really full of all the good stuff. :hug:

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*snap* that's exactly what i was thinking!

ohh she is going to hit the 1kg by next weigh in hopefully!
I used to fall asleep expressing and wake up with the pump still sucking away lol!
its hard to see any bub fighting, i hope the little boy pulls through and that Heidi does not get anyt infections

Well the good news is that Heidi was negative for the infection they suspected to be going around - and so was the little boy. Which I am so very relieved about. For her and the little boy. He is still rather sick though it appears.

We shared a lovely long cuddle together this morning, she just snoozed away - it was beautiful. She'll weigh in again tonight and hopefully tip the 1kg milestone! My supply is still going well which is great, feels so good to know that it will be protecting her from all the bugs going around. They'll remove her central line in the next 24 hours and after that she'll be on EBM feeds exclusively, so it will be my milk doing all the work for her to grow. Amazing really.

I'll let you know her weight tomorrow!

yay go heidi and good on ur EBM :)

WooHoo for mumma's milk!

Yay for Heidi and her mummy!!!! So glad things are progressing well hun :D And I can't wait to hear your next report!!!

Great news about the negative test results :leap:

I hope tonights weighin went well, crossing my fingers for a four figure result!!! You certainly have some fabulous milk :D

Removing her central line, another big milestone, I hope all goes smoothly.
Take care xxoo

Wow! You two are doing so well. Will be lovely to hear that Heidi has cracked the 1kg mark. Yay for Mummy milk!

Glad to hear test results were negative.

WooHoo on almost reaching the 1kg mark :dance: and you're doing a great job with supply of EBM.

Hope Heidi continues to move ahead in leaps & bounds.

Heidi tipped the scales last night at 1030g!!!!!! Yay for the 1kg milestone. What a fatty!!! So that means she's put on a quarter of her original birthweight. And her central line did come out today so she's exclusively on EBM now.

We took DPs brother & wife in to see her tonight, they we just amazed and so happy to meet her. I stayed in the family room with DS and their little girl - somehow I've managed to lose my voice and get a bit throaty so I'm staying at arms length for a couple of days which is very hard. Gives me an excuse to rest up at home - DP had today off and will tomorrow as well, so he's got DS under control while I catch up on some much needed sleep in between expressing. He's my rock right now I don't know where I'd be without him.

Goodnight all x

Fantastic news!! WTG Heidi.

Rest up Hun. I know how difficult it is when illness keeps you away from your little one :hug:

Thinking of you xx

Oh wow! I remember well how excited I was when Immy reached the kilo mark - such a wonderful milestone! Big cuddles darling Mama - you're doing so well. :hug:

Great weight gain Miss Heidi :-) Great work expressing Mumma!!! Keep it up.

I'm sooooo glad to hear she and the other little boy tested negative, that must be a huge relief?

:leap: 1kg!!!! YAY!!!! What a fabulous weight, a real little chubba :)

You are doing such an amazing job hun :hug: and I hope you are feeling better very soon xxoo

Fabulous news!
Rest up and get yourself better :hug:

1kg, she must be looking so fantastic!!!!! So happy for you :D

WTG Heidi and WTG mumma's milk!!

So pleased that she is gaining all this weight. Keep it up Heidi and rest up mum and get well so you can have some more kanga cuddles.

Well after a few weeks of stellar progress, little miss Heidi has hit her first major hurdle and its a big one. We're back on a knife-edge ATM, she has developed a very serious infection in her bowel....it has a big long name that sounds awful and is something that NICU units fear with tiny little prems like DD. Since their guts tend to be a bit slower than a full-term bub, it leads to more opportunity for the gut contents to brew and ferment away creating a nice haven for bacteria to live. The bacteria damage the bowel and it gets 'sick' and sort of goes on strike if you like. So her poor little tummy is very large and distended as if all the air and contents are stuck. At its worst, the condition can perforate the wall of the bowel. Sometimes this can be isolated to a small portion of the bowel and can be helped with surgery. If it starts to destroy more of the bowel as it progresses the condition can be fatal.

Monday night her tummy blew up and they stopped her feeds and commenced xrays regularly to monitor for any perforations. So far her xrays have been clear which is a good sign. She's having them every 8 hours. This morning she has a small amount of blood in some poo which is another trademark sign of the condition. She is being treated with antibiotics and won't commence EBM feeds again for another 10-14 days depending on how she responds. Today they escalated treatment with a few things as 'just in case' measures. She has been intubated (put back on the ventilator) to help her conserve energy and rest her lungs, and its also there is she has a major crash at any stage. She has also had her central line replaced and IVs in what seems like every little limb. They're trying to establish an arterial line but are having some trouble with that one. Today they had to gain access for the central line in her head which just broke my heart. Just through a vein on the surface of her scalp. She is receiving morphine for any pain that she's in so she's very sedated but the aim is to have her as comfortable as possible to conserve her energy and to support her while she fights the infection. So my poor little girl is very very sick right now and we just don't know which way things are going to go. There is every chance she'll recover and the condition won't progress to any bowel damage. There is also every chance that it will - and we have no control over any of it. We just have to hope.

This all happened after I'd spent 48 hours away from her due to the cold I had so its been a major shock to the system and so so hard to deal with. She is very unwell. I'm a mess. We just keep hanging on the next phone call or test or xray to see if things are getting better or getting worse. The doctors are doing everything possible to get her better so we can only go forward with the knowledge that she's got the best treatment and support behind her. Still doesn't make it much easier to see her so sick and having so many nasty procedures. Only a few days ago she was so lively and well. We're hoping to know more about how she responds in the next 72 hours. The paediatric surgeon came to see her today just in case, and they're hopeful we won't have to talk to them again - so am I.

I'm exhuasted. Physically and emotionally. I'm sleeping with one eye and one ear open all the time (like most mums I know). I'm missing contact with her so terribly. I know that sounds so selfish but cuddles with her and being able to help look after her was such a lifeline for me. DP & I are trying to hold it together but struggling a bit. I don't feel like we ever got complacent - we always knew that something could happen - its not until it slaps you in the face that you come back to the reality of it all and realise that she could be taken from us in a whisker.

I'll do my best to pop in and update - send her lots of strength and get well vibes if you have any left to spare.

i can't even imagine what you've been dealing with Hun. just letting you know i'm thinking of you both,you have a little fighter there, :hug:
I hope you get better asap so you can see your beautiful girl again must be so so hard but your such a strong women :hug: