Monday 31st March

Niamh has put on another 30g overnight, not sure where she is putting it all! She has had 3 bradys since 6pm last night (think it was pm and not am this morning)! Either way its not too bad as she manages to sort herself out.

She was wiggling around in the cot when I phoned and despite being put on her left side, had managed to move her head and reposition herself ;) You go girl!

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3pm Absolutely no change at all, not even a brady (hooray) Milk has gone up to 8.5ml which is good and thats it!

Look what arrived in the post today! Thanks to my cousin, Amy :) These are so cute! Love that bunny, thankyou xx

Sunday 30th March

Another great day for Niamh! Not such a good one for Bailey though, he hit his head this morning whilst trying to launch himself on a bean bag at a friends and managed to cut his head quite badley. Great end to a delicious breakfast :) We took him to the nearest Medical Centre and got his head glued back together again :) He is fine though, seems to enjoy telling everyone that the nurse and doctor 'fixed' him! Bless him! We took him to the miniature railway after and he soon forgot about all about it.

Back to Niamh, our little princess is doing so well. She has had her pressures reduced down to 4 now from 6 which means less pressure going into her lungs. Milk has gone up to 8ml/hour and she put on another 10g overnight. I had such a good cuddle with her today, she had her first suckle which was wonderful. She seemed to like the taste and was sticking out her tongue for more! She is so strong already, its incredible.

Saturday 29th March

Morning. What a little star our Niamh is! Despite the diuretic she was given she still put on 10g overnight! She is a little less puffy too which is good, so she must have lost some fluid. This morning she was on her tummy and was breathing in air! She needs oxygen when she is on her back, but she has only been on 24% which is brilliant (air is 21%). Can't wait to see her this arvo.

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We saw Niamh this afternoon and she looked great.She was being very cheeky and even sucked my finger when I wiped her lips :) Anthony has an ear infection so couldn't touch her today unfortunately as he was really looking forward to getting a cuddle. I refused a cuddle as I'm not sure if I am getting a cold or not and we dont want to risk any infection to her. I did her cares though and she was so good and kept looking up at me, little cutey ;)

One of our lovely friends looked after Bailey and even made us some dinner to take home with us and some yummy banana bread! You couldn't ask for anything more really could you?! It was all delish :) Thankyou!

Photos later, got to go out.

Friday 28th March Day 51

I can't believe Niamh is 7 weeks old! I know it was officially yesterday, but it seems so surreal that I have had a baby. Anyway, she is doing amazingly!! She put on another 70g overnight although I think a lot of that may have been fluid as she is quite swollen again in her little bits and her hands and feet were puffy. I would expect to lose weight tonight. She has been given a diuretic again to help get rid of the fluid so hopefully that will help.

I got a really long cuddle today, she was so stable and seemed to enjoy it.It was so lovely, I couldn't stop kissing her little forehead :) I couldn't beleive how strong she is. I put her on my chest and she lifted her head right up and leaned back to look at me! Niamh fell asleep and I think I wore her out as she snuggled down once she was back in the isolette and fell asleep again.

Father Kevin came in to see Niamh and gave her a blessing which was lovely, he is such a lovely man.

Thursday 27th March

7 Weeks today!

Our little princess is doing so well, she is back over a kilo again and is doing well. She was so smiley today, but of course the batteries in the camera were flat so I missed it all! Can't believe that! I will have to make up for it tomorrow.

Not much else to report really. She is so much more alert now that she isnt sedated all the time which is really nice. I washed her hair again and did some cares, oh, and the man from Twinkle Toes can and took castings of her hands and feet. Hopefully they will turn out alright, although we can do them again a bit later if not. She was so exhausted after that she fell into a deep sleep. We had to wake her to change her 3 hours later!

Will get some photos tomorrow, I have already changed the battery just to make sure!!

Wednesday 26th March

Got here at last! Niamh is doing really well still. All the effort from breathing has meant that she has lost some weight so her feeds have gone up to 7ml/hour now. She has been getting a bit constipated so has had a couple of suppositories which has helped. Niamh was due a cot change tonight so I got a lovely cuddle with her! She was so sweet and was pulling lovely little faces!


Love how this photo turned out out, taken by Anthony.

Bunny is in plastic to protect it from moisture in the cot and for hygiene reasons. (Don't want it to catch a cold lol)! Love how she is looking up at me!! Wub!

Niamh is saying "I'm going to cry mummy, I'm going to cry.........Fooled you!! Mwah ha ha! :)"

Tuesday 25th March

Niamh is doing outstandingly well! She is still on the Opti-flow which is great news. She is stable with only a few minor desats which seem to be due to moisture in the tubes. Once that is clear, she is fine again. She was even lifting her head earlier apparently! That I would love to see :)

Anthony and I had a lovely relaxing day today. We enjoyed some time out in the Clare Valley and had lunch and visited some wineries. One of them is called Sevenhills and was originally started by the Jesuit Priests. Really should do that more often :) Bailey was in Child Care so we could just take our time and enjoy :)

We will go and see Niamh tomorrow night, so more pics then. She is being weighed at midnight tonight so we should have more info in the morning.

The gorgeous Easter Card that the nurses made for us from Niamh!

Click on the photo to see the larger version and read the poem. It brought tears to my eyes :)

Monday 24th March (Day 47)

EXCELLENT NEWS!!!

Firstly - Our girl has now joined the Kilo Club! She put on 70grams and now weighs 1030grams!!

Secondly- Niamh has done so well and was so stable on CPAP they moved her on to Optiflow today!!! We can't believe it! She looks so much more comfortable and even smiled at me today. Of course the nurses said it was wind, but I know it wasn't lol! She seemed to be saying 'Look mum, I'm so clever'! Optiflow still gives pressure and oxygen support but is much more gentle. The prongs are so much softer and more comfy for her.

She is 6 weeks and 4 days old but still only 29 wks 5 days gestation, amazing!

I hope she keeps going strong on it, but so far, so good!

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Niamh has been chosen to be EarlyBirds Baby of the Month for April!

Her little face is going to be on their website for the whole month (www.earlybirds.com.au)
She is also going to be sent some of their beautiful clothes to wear! I love their clothes and was lucky enough to receive a few items when she was born. Im so excited for her ;)

Easter Sunday (Technically)

Morning, and Happy Easter!!!

Well, we stayed out past midnight, its a record! I did fall asleep in the cinema, does that count? Anyway, we had a good night and saw the Northern Lights on North Terrace which was nice. Its an unusual light show which projects artistic patterns on some of Adelaides oldest and most beautiful buildings. Its part of the Arts Festival and the idea originated in Canada. Plus we got to enjoy a coffee at a cafe opposite which was nice.

Niamh is doing really, really well. She looked so cute today when we saw her. Would you believe Anthony's wedding ring still fits up her arm? It will be the last time we try though as her hands are getting bigger and we dont want it to get stuck! It looks very cute as a bracelet and Niamh seemed to like it too. She looked happy on the CPAP so lets hope she doesn't get too tired, it is a big effort for her but her oxygen requirements are relatively low.

Must go to bed, Im having to go back and correct so many errors its not funny! Heres a couple of pics, she looks like she is almost smiling doesn't she? I can't stop looking at her gorgeous little face, I'm in love!

Good night, hope the Easter Bunny is good to everyone tomorrow. We are joining Bailey at our friends and having a barby brekky and an egg hunt, should be good fun! ;)






We went in to see Niamh this arvo and she was in good form. We both got a cuddle too which was a bonus! Niamhs feeds are back up to 6.5ml and she seems to be tolerating it well. It was lovely to see her, the night staff had made us a gorgeous card with her footprints in and a poem. It was beautiful. We also had a little gift from her of a knitted chick with a choccy egg. Very sweet!

Saturday 22nd March

Quick update, sorry its late, we have been flat out. Niamh went really well overnight, has been pretty stable. Feeds have gone up to 4ml/hour and she is great :) Just about to run out and see her now. Expressing as I type (Yes, I am outstandingly multi-skilled lol)!

Back later, although Bailey is having a sleepover at our good friends tonight, so we may be out all night ;) Well, until we collapse at 11pm rofl!

Friday 21st March

I just phoned for an update on Niamh. She has had a pretty stable night, just her usual ups and downs. She has put on 50g! What a trooper, although I can't help feeling she is teasing us by teetering on the edge of the Kilo mark! She had a diuretic yesterday as she has some swelling in her feet, hands and her little girly bits. They have gone down a bit but its still there. She is doing all the right things though, so it should only be a matter of time. We will go and see her later. Its funny how you have commented on how big she looked yesterday, I thought exactly the same and kept saying it to all the nurses!

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WOOHOO!!! TUBES COMING OUT!

I just received a call from one of Niamh's doctors and she is going on CPAP in 30 minutes! Im so stupidly excited its not funny. I really hope this time is more successful, she is so much more ready than she was so fingers crossed! They have high hopes for her :)

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Niamh is doing really well so far, she looked really comfortable :)

Thursday 20th March

Another good day for Niamh. She was pretty stable the whole time I was there today which was great. I was there most of the day today, did Niamhs cares for her which was nice. I washed her hair as it was looking quite sticky poor little thing. I changed her nappy which was interesting lol, she was quite prolific in emptying her bowels, I had been warned it had been projectile overnight, and they were not wrong! Amazing, tiny little creature, hope she didnt loose too much weight in the process ;) She looked bigger to me today, probably just my imagination, but she is growing everyday. She wont be weighed until tomorrow, I put that she was 910grams on her growth chart, but its actually 930g, not sure how I got that wrong, but anyway...

I spoke to her doctor today who is keen to try CPAP again, hopefully on Sunday if all goes to plan. We are excited about this and are very hopeful this is her last and final time off the ventilator. She is more mature now (6 weeks old today or 29 weeks +1 corrected) I can't believe we have been doing this for 6 weeks already!

I spoke to the counsellor who was very nice, he said I was quite normal (yeah, right, whatever, rofl)! I am just feeling overwhelmed by everything and have too much on my plate. I knew that and guess I just have to deal with but Im feeling much better today anyway. I think I just needed a meltdown and a few have said it was about time!

The 6 week mark is apparently when a lot of people hit the wall. You are running on so much adrenaline and it just suddenly hits you, the enormity of what you are going through. We never really thought Niamh would make it and didn't even have time to even consider that possibility before she decided to make her entrance. We had no idea what we were dealing with and just had to get on with it. Nothing can ever prepare you for this whole experience and I think we are just learning as we go.

Anyway, on a lighter note, more gifts!! :)

Thankyou to my gorgeous friend, Leoni who sent Niamh a beautiful Easter present, some mini MCN (Modern Cloth Nappies) which I love, and a lovely hand made bunny. There was also a cute little gift for Bailey too. Thankyou so much xxx

I also bought a T-Shirt to raise money for the NICU and SCBU wards at WCH. They are so cute, I cant wait until Niamh can wear it! I bought her two in sizes 0 and 1 so that should do her a while!

Wednesday 19th March

Another good day for Niamh. She has been quite stable with only a few desats. She seems to recover quite quickly which is good. She was weighed and measured again today which was all good. Milk has gone up to 6.5ml/hour which she is tolerating well. Her little cheeks look much chubbier to us now, I cant believe she is almost in the kilo club!!! I might get her Twinkle Toes cast done soon, she had to be over 800g so it should be alright now.

We rode the motorbike tonight which made a nice change, I hadn't been on it for years!! We have a cool change here now thank goodness. Adelaide just broke its own heat record which was 9 days over 35c. It was something like 15 days nearer 40c. Scorching! It only happens once in 3000 years!!! I was getting used to it I think and didnt mind it too much!

Back in to see Niamh in the morning, so going to sleep now. Will upload photos tomorrow.

Tuesday 18th March

A good day for Niamh today, she has been more stable and has put on more weight. A lot of her weight may be due to fluid but its still a step in the right direction and we will get more of an idea at her weigh in tomorrow. I got to have a cuddle with Niamh today which was wonderful, she was very cute today and I gave her lots of kisses! ;)

It was one of Niamh's nurses last days today before going on an adventure and we wish her all the best x Thanks for everything ;)

Ive been feeling very overwhelmed by everything lately and have decided to talk to one of the hospitals counsellors. Im hoping to get some coping strategies for when it all gets too much. It can't hurt. I also saw a lactation consultant today who was very helpful. I can stay on the domperidone longer term now which is great and should help with things.

I didnt get any good photos today, sorry!

Monday 17th March

Update: Niamh has been quite settled. She has been quite blocked up so she has had a couple of suppositories today which did the job. Milk has gone up to 6ml/hr (great, just pile on the pressure lol) and she will be weighed tonight.Niamh has had quite a stable morning and was good overnight. She is still having ups and downs and increased ventilation, but is otherwise good.

The domperidone seems to be helping my milk which is great.

Off to playgroup!

I have to say a huge thankyou to my sister who has sent Niamh the most gorgeous presents! A personalised photo album, beautiful, soft woollen blankie and a NICU grosuit in size 700g-1.5kg! Its perfect and has special delivery written on it.

Thankyou so much, they are wonderful, we absolutely love them!!!

Sunday 16th March

Niamh seems to like her new digs! She has been quite stable and has been quick to recover when she does have a bad turn. They have increased her ventilation pressure which seems to be helping. Her weight has dropped slightly, but we were expecting that. The bloods came back good this morning so she is looking pretty good.

It was a bit of a disastrous morning really, Bailey was sick in the early hours so we couldnt take him to his friends as we didnt want him spreading any germs. Anthony stayed home with him while I popped in to see Niamh. Bailey is fine though, no sign that anything was amiss at all which is great! Not sure what that was all about as we are all healthy too (thank goodness)!

I got some more domperidone and also stopped off at the health food shop and got some Fenugreek capsules. I also found a recipe for Lactation Cookies with brewers yeast and linseed meal, mmm yum, ha ha! I think the chocolate chips and sugar will help with the taste though :) I might take some to coffee morning on Tuesday as Im not the only mum who needs to boost supply.

Saturday 15th March

Our Tiny Treasure has been up and down over night again. The doctors have just done their rounds and have upped the chloral to keep her nice and calm. Little rascal has been wriggling around! She is looking good, her skin colour etc, but they took bloods to see if she does have an infection. Fingers crossed she doesn't. They will be weighing her again tonight so I hope she has put more weight on or at least kept on what she has already gained. She is still tolerating 5.5ml/hour of milk which is great.
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Just spoken to Niamh's nurse for the evening. She has slept for 6.5 hours and has been fairly stable which is great. She has even moved into new digs! NICU 2 ward. I havent seen it yet, but there are only 6 beds and they each have curtains that pull round for more privacy. Its supposed to be more like a hotel so it sounds good. We have a friend over there already too so I will know someone over there. It means I wont see our other new friends though as you dont tend to go 'visiting' unfortunately. Ah well, thats what coffee mornings are for.

We saw Niamh today and she looked so sweet. She doesnt have an infection thank God, she was borderline. She wont be weighed until overnight so an update on that in the morning. I should get some more domperidone in the morning to help my milk supply as that has dropped right off since stopping it.

Friday 14th March

I just phoned for an update, our little porker is stacking on the weight! Look over there <--- Hopefully its not all fluid as her milk has gone up to 5.5mls now ;) Niamh is still much the same, up and down. We will go and see her tonight as we are treating Bailey with a trip to the market. He loves the little handmade gingerbread men there so we thought that and a babycino would go down a treat! We will go and see Niamh with him after.

I'm missing her lots at the moment, especially since I know it will be all day until I see her! I feel really guilty, but Bailey has a playdate with his friend today and its really good for him to do his normal things. Bah!

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Baileys playdate was good this morning although I did feel bad not going to the hospital, anyway we did go this evening although it didnt quite go as planned. In fact it was disastrous!

We went to the market but decided to grab an Indian at a restaurant, rather than the food court, wrong choice! We were hoping for a quick meal but it turned into a mammoth wait for the food.

We had to take Bailey for a walk twice, there was a bit of metal in the rice (turned out it was from a metal cleaning brush) and the food had been sitting so long under the heat lamp it had formed a skin! It was 40c here again today and still stinking hot out there so we were uncomfortable and watching our visiting time tick away. Not exactly the ideal night out. We ran out of time to go and get Baileys gingerbread men but luckily he didnt know as we hadnt mentioned it!

We had about 20 minutes to visit by the time we got there! Niamh looked gorgeous though and it was lovely to see her. We left the camera in the car unfortunately so not even that went to plan lol! It looks as though she did have some water retention and she was given a diuretic so the weight gain probably isnt a true reflection of her porkiness. Hopefully it wont be that different when they weigh her tomorrow. She has had a 12ml blood transfusion and has started on iron for anaemia. She also had some bloods done and is showing a slight infection so they will repeat those in the morning before starting any more antibiotics.

Poor little mite, still not that great really and still up and down. We will have some more time with her tomorrow. Oh, and Bailey tried to shout through the portholes again but we didnt let him open them. Instead he shouted very loudly "WUFF OOO NEEEEVE" rofl :)

Night all and thankyou for all your comments. Its lovely that complete strangers would write such warm messages, it means a lot xx

Thursday 13th March

I'm glad I called this blog "Day by Day' because it really is.
Today was a much more positive day in the NICU for Niamh. I don't know what changed, if anything, but she did seem to be better. Niamh's milk is now back to 5ml/hour and she is tolerating it well. I changed her nappy which had leaked down her leg, so it's obviously getting through!
I also washed her hair today and cleaned behind her little sticky ears so hopefully that made her feel better. I also gave her a massage with some sorbolene as her skin was so dry. I love being able to do little things to make her more comfortable.

Niamh is no longer on the anti-biotics and so her canula has been removed, freeing up her arm which must be a relief for her. The plan at the moment is to give her more chloral hydrate to keep her sedated and to increase her lung pressure if she has an episode. It seems she is in the habit of holding her breath which is causing her all sorts of problems!
She has gained another 20grams too, which is great! We may be able to give CPAP another go next week when she is bigger and hopefully stronger.

Wednesday 12th March

We are going to see Niamh this evening so I phoned for an update today. They reduced her feeds overnight to 4ml but they were looking to bring them back up to 4.5 later today. She has still been unstable and there is a possibility that the PDA is open again (the duct). We may know more later so will update then.

EDITED TO ADD: We saw Niamh last night and she looked pretty good. She is still very up and down, but we spoke to her doctor and he isn't worried. The duct is partially open but there is no flow through it at the moment, so it is going to be left to sort itself out (hopefully). Niamh has had a cardio echogram and an Xray to check the position of the vent tube. All was good (apart from the duct) Her lungs look great for her little size and age. There is a slight collapse of her left lung, but hopefully that will rectify itself as she grows.

Tuesday 11th March

Not the best day I've had. It started hearing some bad news about another girls baby which put me on the verge of tears for the rest of the day. Its amazing how much you can relate to someones situation even though it may be very different to your own. You develop a real empathy for people you don't even really know and the mums in the NICU,PICU,and SCBU are the best support there is. When someone asks you how you are, you know that they really 'get it'.

I went to the coffee morning which was good, but again, one emotional mum set about three of us off again. It was just one of those days!

Niamh was unstable throughout the night and she had some very scary moments when I was visiting her today. She had two bad bradys (dropping heart rate) and her tube had kinked which caused her oxygen to drop. She was turning blue which was very scary to see. Luckily two fantastic nurses were there to stabilise her and they gave her some suction. She has been like that all afternoon and has had more episodes. Ill phone again later after the doctors rounds to see what they say. Ive met a really lovely mum in the cot next door who was really sympathetic and held my hand.

This sucks! Hopefully tomorrow will be a better day.


Edited to add: Niamh has been stable for the last hour. The doctors came round and looked at her charts and dont seem too concerned. Her feeds are at 5ml/hour which will stay the same and she will come off the antibiotics in the morning.

Monday 10th March

Cuddles!

Niamh is doing so much better then she was, she is still on the anti-biotics but just until this evening. Niamh is back up to 4mls/hour feeds again and is coping with it well. They have taken some bloods as well so we should have the results of those tomorrow. Im not sure exactly what they are checking for but will find out. I expect one of the tests is her haemoglobin levels, Niamh's levels were low the other day and she had another blood transfusion on Saturday I believe. I think I am correct in saying that she has only 50/60mls blood in her whole body and they take about 9mls every time they do a blood test, which is basically everyday. No wonder she gets anaemic!

Look to the left for her weight gain! She is doing so well :)

It was so good to get a cuddle today! We had a skin to skin cuddle which was lovely ( (I think thats called Kangaroo Care). She is so tiny, we just popped her down my top! We sat there for about an hour and I got to kiss her head a lot ;) It was wonderful. The beautiful pink top she is wearing in the photos today is the one that my friend Brooke sent. The size is 800g upwards, but fits her perfectly! Thanks ;)

We also got some gorgeous clothes from Anthony's sister today, thank you so much, they are gorgeous! I will post pics of those tomorrow now.

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Sunday 9th March

I phoned for an update this morning. Good news! Niamh's doctor had a look at her this morning and doesn't think she does have an infection. She will remain on the anti-biotics for 48 hours justs to make sure though. She has been very stable, and is no longer agitated. They have also recommenced her feeds and she is now on 1ml an hour, this will be upped to 2mls at 1pm.

Thank goodness for that!

Saturday 8th March

Lots of photos for you today! We went to see Niamh this afternoon and put on her new dress from her nanny and she looked beautiful! She was still a bit unstable and but also very active.

We just had a call from the hospital, they wanted to let us know that Niamh has been agitated and unstable. They have put her on anti-biotics and stopped her feeds as there is a small risk she has an infection. Our poor girl hasn't had the best week (and nor have we actually) but hopefully by jumping on the earliest sign of mischief, we can avoid it developing into anything worse.















I really hope she doesn't have an infection. The plan when we left today was to fatten her up for a week and try to get her off the ventilation again in a weeks time. At this rate, it will be even longer. I cant stand all this forwards and backwards, I just want her to lie low, get bigger and stronger and come home. Wish it was that simple.

We were introduced to a new couple in the NICU.They had twins four days ago and were still getting their heads around things. It was really nice to talk to them and made me realise how far we have come in such a short amount of time.

Niamh's iron on clothing tattoos are getting a few comments :) They are such a good size for premmie clothing so I will pass on the word to some of the mums. Ill also mention ACOCP to them.

Anyway, photos as promised. She is gorgeous!

Friday 7th March

Well, we tried! Niamh was really starting to struggle on the CPAP so she was reintubated today. We feel sad that she has gone backwards, but it was too tiring for her. She is still so little and we are expecting such big things from her. She looked really cute today, it was hard to leave her podgy little cheeks behind. Hopefully she will be more stable back on the ventilation and we can try and get her off it soon.

Bailey has become rather attached to Niamh's wookie!