Monday, 26 May 2008

Niamh Annabelle Preemie Doll


I have a wonderful friend who just sent us the perfect gift! It is a perfect miniature replica preemie doll of the exact same length, weight and head circumference of when Niamh was born! It is incredible to think she was that tiny, how quickly I have forgotten how she felt in my hands that first time. I remember being shocked that there was actually some weight to her, like that of a small paperweight, but I have little concept of her physical size now.

Thank you Mish, you are a gem!

Monday 26th May





I think I have worn Niamh out lol! We had an intensive physio session at home today, she had 5 minutes tummy time, some gentle leg massage and some little 'bicycles'. I pushed against her feet so she could push back as well. She is a strong little thing. She then had a nice, warm bath and is currently fast asleep :) She has been great, it's so good not having to go to the hospital everyday, I seem to have so much more time to do things! It is lovely to be able to relax with Niamh and do normal mummy things.

Anthony took Bailey to playgroup this morning and then to a friends for lunch so I had a blissful morning to myself with my little cherub. Bailey had great fun too and made a robot which is very impressive!

Here is some video I took while in the parenting unit, Niamh is holding her own bottle lol!

video


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Sunday, 25 May 2008

Sunday 24th May Day 1 at Home!



We had a great night, Niamh is still feeding four hourly although when she woke up at 3.30am she had a breastfeed and then a bottle feed which took ages! I think the teat we have isnt fast flow enough as she was obviously still hungry when I put her down but it was taking a long time for the milk to go down. All credit though, she took a blooming long time, but was still sucking away! A friend has dropped some faster flow teats around now though so the next feed should be better. This mornings feed was fine though and she is fast asleep next to me now and very content. I love having this bassinette on wheels, she comes all round the house with us and we can keep a close eye on her when Bailey is around too.

Bailey has been great with her but is quite enthusiastic about standing on a chair to peer in at her! We are keeping a careful eye on him without telling him too much to keep away from her, its a fine balance between involving him and keeping jealousy at bay and him squashing her lol! I think he has been overwhelmed with everything the last week or so, he was very teary today and upset. He was also quite hot so I gave him some panadol and put him in bed. He fell fast asleep with no protest so I hope he feels better when he wakes up.
We are going to go for a walk later and take him to a local, quiet, playground. Niamh has never been in fresh air before apart from leaving the car to the front door yesterday!

I cant believe how the coccoon on the pram swallows her up! She is so tiny :) I also have not got the hang of her girly bits and how she can subtley wee everywhere without me even realising lol! Ive had to change numerous outfits and change mat covers as I wasnt quick enough with the nappy! Little monkey x

She is so quiet and content, when she is hungry she will let us know, but she is still so sleepy at this stage. Im sure she will get more demanding as she gets older, but Im enjoying this right now :)

Thank you for all the comments you have left!! I couldnt believe there were 18 this morning!! Zoe, thank you for your comment, you made me cry!! Its been really lovely meeting you and you are a fantastic nurse, Niamh enjoyed having you look after her, thank you for everything :) All the best for a long, happy career.

Saturday, 24 May 2008

Saturday May 23rd Day 108

We are home!!

Everything went really, really well. Niamh is feeding brilliantly, we are breastfeeding and topping up with formula which is working very well. Friday flew by really quickly, there was some form filling to be done and appointments to be made for Niamh's follow up checks. Apart from that we concentrated on her feeding and watched some interesting videos on communicating with our baby and CPR etc. Bailey came to see us and was really lovely with Niamh, he gave her a soft toy that our friend Cheryl had bought for her. She then took him home and looked after him for the night. We had a good night with Niamh, she is feeding four hourly at the moment and although it takes a long time to feed her, it wasn't too bad. Just hope she keeps that up! I wasn't as nervous as I thought I would be and it all went very well. I kept forgetting she was there! We really missed Bailey and were very conscious that he may be feeling left out so as the night had gone well we thought we would come home early. He was really pleased to see us and as soon as we got home we all went to bed for a sleep. Niamh needed a feed straight away so it took a while before I could get to sleep but we had a good rest. Bailey woke up at 7 and we played for a while before dinner and had stories after before he went to bed again. Niamh just woke again for a feed which was a bit early, but hopefully she will settle and I can get some sleep.
Im loving having both my babies under one roof, certainly makes things a lot easier!! So far so good! Bailey has been wonderful with Niamh, she bought him a coming home present of a Firemans dress up outfit and he stroked her head and told her he loved her. He is very cute with her and has gently held her already, I really hope that keeps up, makes it a lot easier. I think it helps that he has been gently introduced to her for the last few months.

It was sad to say goodbye to the staff, but we will pop in from time to time when we have our appointments to say hello. They have been so wonderful and everyone was genuinely happy to see Niamh doing so well and going home. Many of them remarked how incredible it was she was going home without oxygen and how healthy she looked, we cant believe it ourselves and we are so proud of her! Its so good to be home :)












Thursday, 22 May 2008

Thursday May 22nd Day 106

The end is nigh!!

We have heating!! Woohoo! About time too ;) Now Niamh will be lovely and toasty (or warm and cosy as Bailey likes to say).

Ive been flat out today, ironing, washing, packing our bags (yippee)! I set up the bassinette and now have to go out and pick up the cake and get some groceries. Its 3pm already, the day has flown by! Bailey is in Child Care thankfully, it would have been a nightmare while the installers were here as the front and back doors were open all the time.

Niamh is doing great today, still off oxygen and doing well and feeding well! I am really missing her but just wont get time to go in today now.

Better get moving!
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Phew! Thank goodness thats all done! Havent quite finished putting washing away etc but it will wait. Im so excited and nervous at the same time! I cant wait to see Niamh tomorrow. I had almost forgotten about her eye test in the morning, I really hope that is all ok too, the final hurdle! She had been feeding well today and breathing well too.

I cant believe this is finally coming to an end. I know things will be different for us and her due to her being premature and life hasnt't finished flinging these little challenges at us, but I truly believe we can get through anything together now. Niamh has astounded us with her strength, we have been very lucky to have such a robust little baby. I have met many wonderful parents who have faced far tougher challenges than we have but still manage to cope in some way.

The nurses in the NICU are very special and have been magnificent in getting Niamh to the stage she is at. She spent 11 weeks in the NICU and I met some wonderful nurses there and felt a great rapport with some of them.

Niamh flew through SCBU 1 and only spent a week there! She had her first bath there and her first bottle feed. The nurses there and in SCBU 2 have been fantastic in getting Niamh to bottle feed and get her off the gavage. She has really progressed quickly, and certainly much quicker than we ever imagined. We didnt expect to be taking her home two weeks before her due date!

I could rave all night about how perfect she is and how much we love her, but I won't lol! I would like to thank you all so much for your support, your comments, emails, texts, meals, clothes, ironing, gifts and valuable Bailey sitting!! It is all very much appreciated and I have been totally overwhelmed by how much you all care and have looked after us, both physically and emotionally.

I will let you know when we are home. xx

Wednesday, 21 May 2008

Wednesday 21st May Day 105

Thank you everyone for your comments and support! Niamh has inspired me again, so here I am pumping! I have to admit to milk envy today, I opened the fridge at the hospital to put my milk in and there were six FULL pots from one lucky mum! I never want to hear anyone moan about oversupply ever again, it sucks seeing so much milk, it seems really unfair! Anyway, Im over it and soldiering on :) Niamh is amazing!!

She is OFF oxygen!!! Can you believe it? It's like she has always known what is required from her and just does it. She was being monitered for her oxygen saturation levels whilst feeding and didnt skip a beat, she had a good breast feed and I topped her up with 50mls of EBM which she took really well, she even left a little bit so I must have guessed her intake pretty well, she is on 75mls at the moment. The next feed she should have a bottle instead of a gavage which if she does well would be 6/6 suck feeds a day, maybe another tube we can lose now? Niamh will keep the oxygen tubes taped to her for 24 hours just in case and then they should be removed tomorrow morning hopefully!! I cant believe it, just as I was preparing myself to take her home on oxygen!

Niamh Annabelle=Super Star :) x

Anthony and I were up late last night making little thank you cards for the NICU staff, we wanted to do something personal so hopefully we have enough for each of them!


Ive also ordered a huge cake for them all, that always hits the spot lol! There is so much to do in prep for Niamh coming home, Im just washing all the sheets, clothes and the baby bjorn, then theres the ironing! Im panicking I dont have enough food as I dont want to go shopping next week at all, there seems so much to do, aarrgh! We are also having the heating installed tomorrow which will take all day.

Did I mention that I may have a stomach ulcer? Ive got tablets to see if they help and had bloods taken. I get the results next week.
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Just got back from seeing Niamh, they have taken all her tubes off including the nasal gastric which means she is now on all suck feeds! I cant believe it, we have a 'real' baby with no wires attached. I wasnt expecting to see no tubes tonight as they said 24 hours but she was doing so well ;) Here are a couple of pics of her cute little face :) xx

Tuesday, 20 May 2008

Tuesday 20th May Day 104

Well, its been an emotional day for various reasons. I'm feeling very let down with my milk supply. I haven't come this far to give up but I can't do much about it any more, Im taking domperidone and expressing regularly. Ive hit the wall again and am so exhausted now, we have finally reached the end and I think I am going to flop over the finish line rather than jump over it!
Niamh was sick this morning, she brought up some of her feed. She has really bad nappy rash, so much so that the skin is broken. It looks really sore. She has a little red rash under her chin too, poor little thing! Niamh was given some steroids today to mature her lungs so we can start weaning her off the oxygen. She may need to come home on minimal support after all, we will wait and see.

Monday, 19 May 2008

Monday 19th May Day 103



Niamh is doing really well. She was sound asleep in her nice, dark room today. She didnt want a breast feed but woofed down a bottle! Im really struggling with expressing at the mo, Im not getting much and am wondering if its worth all the effort. Niamh is on 75mls every four hours and I only get 20mls now every 3 hours. Im really in two minds about using formula, at least I will know how much she is getting and if I cant sustain her with my milk, whats the point?

Sunday, 18 May 2008

Sunday 18th May Day 102




Anthony has gone in to give Niamh a bottle feed today, I have to stay home and get her room ready and look after Bailey. She had a brady last night which Im worried about. I hope she is ok and we can still bring her home on time. I think I will be on tenterhooks all week!! We are also going to fit the bolt in the car to install her car seat today! So much to do around here to do to facilitate the heating installation on Thursday, plus banging nails in walls to hang her pictures up etc! Busy Busy!
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EEEEK!!!! Niamh is off the monitors!! I am really excited but petrified at the same time! She has been moved back into the side room which is also scary as she is out of the way a bit, but they must think she is ok to do that! Im so proud of my little girl, she has come such a long way. Clever little thing :) x

Saturday, 17 May 2008

Saturday 17th May



Niamh was so gorgeous today (well, she always is but you know what I mean)?! She looked so cute and was also very antsy!! She was obviously hungry as she was really wriggling around. She had another good feed, seems to have got the hang of that one now! We left her all settled and sound asleep.

Im so excited about her coming home!! I keep trying to get her room sorted but somehow can't get around to finishing it! There are so many things to sort out and put away, but it will be done by the end of tomorrow, Ive promised myself.

I managed to get an appointment with the doctor on Tuesday so will get checked out then.

Anthony and I are going out to dinner tonight, I can't wait!

Friday, 16 May 2008

Friday 16th May Happy 100 Days Princess!!


STRAWBERRY & CHOCOLATE GATEAU
Layers of vanilla & chocolate sponge filled with light vanilla cream patisserie
(Thank you Muratti Patisserie,Prospect, Adelaide)




Wow, one hundred days! It seems like forever already! It was really lovely when we went in today, Niamh had balloons on her cot and two certificates and a beautiful cake! I have taken photos but will post them later as I have to go out now. (Photos now posted, I know they have spelt her name wrong, but the cake was delicious so who's complaining lol)! Im going to get checked out as I had a lot of pain today. It feels like gallstones which is ironic as I dont have a gallbladder lol! Should be fine :)

Niamhs eyes: Well, it seems to be good news. There appears to be slight improvement on her left eye so although she will be checked again next Friday it looks a bit better. Im still holding my breath though as its not that conclusive yet. Even if she does need surgery which hopefully is still looking unlikely she could be a day patient. The recovery time is 12 hours so it shouldnt delay us getting home.

Niamh will stop her caffeine today (the drug that helps her breathe) she should be off the monitors in 48 hours and hopefully off oxygen by mid next week. We are slowly getting there!! Just her feeding to sort out too now.

Ive been feeling really low today, dont know why, probably just exhausted and so desparate for her to come home and for her to be well.

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Back from the Womens Assessment, what a waste of time! Im neither pregnant nor recently given birth so they can't see me, I didnt realise there was a specific criteria. Not to worry though, Ill just go and see my doctor, its not too urgent.

Thanks for all your lovely comments. I have to give a big thank you to Bec at the hospital for arranging our gorgeous cake today and Niamhs certificates, thanks Bec! You are fab!

Thursday, 15 May 2008

Thursday 15th May Day 99 Princess Royle!



Isn't this the cutest photo you have ever seen?!! One of the nurses made the baby next to Niamh a crown today, well Niamh was playing up all morning! Her heart rate was over 200 and her breathing was really increased, we put it down to jealousy! As soon as her nurse made her one she was so happy and even cracked this beautiful smile!! I was so lucky to get it on camera as she promptly fell fast asleep after!

Niamh has been great today, we gave her a bath which really soothed her. She loves her baths just like Bailey did and was so relaxed and floaty :) She was really alert and awake today, it was lovely.

I cant believe she is 100 days old tomorrow! Its a really big milestone for her. She is having her eyes tested in the morning which I am anxious about, but fingers crossed anyway.

Wednesday, 14 May 2008

Wednesday 14th May



Niamh has coped really well overnight after her immunisations, she had some panadol but otherwise was quite good. She was given the rotavirus immunisation today, I had no idea she was going to have it and it would have been nice to have some warning so I could have been there with her. Hopefully she will cope just as well. I hope they had the lights off for quiet time today, they dont always remember and Im so worried about her eyes being stuck under those flouros, but what can I do? I cant wait to get her home, just eleven more days!
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Niamh was just wonderful tonight. She was so alert and awake and so gorgeous! We gave her lots of cuddles and she was just staring and touching our faces. She even had a small nuzzle on me as she was really searching around :) Back again in the morning.

Tuesday, 13 May 2008

Tuesday 13th May

Just a quickie tonight as Im tired. Niamh had her immunisations today and screamed her tiny head off! The poor thing. She is so tiny, did I mention that she is tiny? I hated her little legs being stung with the needle she was so upset. After the first one she had a horrible brady, she went quite grey and her eyes went all cloudy. She recovered quickly though and apart from that and some irregular breathing was fine. She was quite unsettled for a while but after a nice cuddle she finally relaxed and fell asleep.

Its been a full on day. The jabs were due at 9.30 but didnt happen until 12.30 which meant I had to stay later. I had planned to start getting her room organised this arvo while Bailey was in Child Care but it didnt work out that way. I ended up having to run errands and do shopping which took up the rest of the day. Oh well, the important thing is that Niamh is ok, she has been good all afternoon as well which is great. Its the start of the wind down out of here so Im glad it is progressing. Hopefully on Wednesday we may be able to start weaning her off the oxygen, fingers crossed.

They are now weighing her twice weekly so no update until the end of the week. She has also been graded onto 4 hourly feeds which is great! She fed really well today, she latches on like an expert and is really settled after!

Another friend went home today, she had been here almost as long as us and was really emotional about leaving. She described it as having a security blanket, you get very used to the routine and the fact that other people are caring for your baby. The sheer responsibility of looking after your baby (especially one going home on oxygen for 6 months like her baby)is overwhelming. Its certainly a rollercoaster ride! Another girl is going home tomorrow with her baby, she has been here for SEVEN months!! It s fantastic to hear she is going home! She has been through so much and so has her gorgeous baby.

Monday, 12 May 2008

Monday 12th May Day 96

Happy Birthday Suzy! Have a great day ;)

We were told a four letter word today!.... HOME!

I can't believe it, it seems to have jumped up really quickly which sounds ridiculous but here it is. We are booked in the Parenting Unit next week (May 23rd)to see how we go on our own without monitors and hopefully no oxygen etc all being well. We go in early on Friday after Niamhs next(and hopefully final) eye test and then stay two nights and come home on Sunday May 25th. I cant wait, it will seem so strange at first though!

Niamh is getting her immunisations tomorrow morning (her two month ones lol) She doesnt seem big enough, she is so tiny. I will be there with her and give her a breast feed after. She is so good now, she hasnt had a brady with me for days and Im more confident with her too. Exciting stuff!! Who would have thought we would get this far?!! Im thrilled, clever little princess xxx

Sunday, 11 May 2008

Sunday 11th May Happy Mothers Day!

I had a lovely Mothers Day! I hope you all did too :) The staff at the hospital were great, they made us all a print out of a poem with some choccies attached and Niamhs little footprint, it was so lovely. We also got a bunch of flowers! It was lovely. I had lovely cuddles today and gave Niamh a little breastfeed, she was pretty tired. I also gave her a bath which she thoroughly loved! She just floated happily away, very content!

Niamhs eyes look a lot better today, much calmer!

Thank you for all your good wishes, it means a lot! And a big thankyou to my good old schoolfriend Katharine, who came down from Sydney for the weekend to help us out, Happy Mothers Day!











Saturday 10th May






Poor Niamh, she was so upset when I got there today. Ive never seen her like that, her eyes were all puffy and weepy and her little eyelids were turning inside out when she cried. They were so swollen :( We got the doctor to have a look and they were looking better when he came so they will keep an eye on it. My poor darling, I was really choked up when I saw her, she broke my heart. She had a great feed though and was really settled when we held her.

Back in the morning again for a feed. She was having a good evening when I phoned so hopefully the eyes will heal quickly. I think they are still sensitive from the test yesterday.

Friday, 9 May 2008

Friday 9th May Day 93

Eyes this morning!

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Hmm, eyes werent quite as great as I had hoped. They should hopefully be fine but they still want to see her next week to review her. They don't seem to have gotten any worse so fingers crossed again for next week! We didnt have a very good feed today as Niamh was too tired but she did have a good bottle feed at 8pm.

Thursday, 8 May 2008

Thursday 8th May Day 92


Niamh did really well again breastfeeding today. She was alert and awake and ready for it! The ladies from the Pipin trial that she is on came and measured her today, she is 42cm long and her head is 30.9cm. She is a big girl :) She has now moved back out of her room and into her original spot next to her little friend as they needed the room for islolation.

Niamh is having her eye test again tomorrow so I am going to try and get in as early as possible. Fingers crossed its ok! We also saw her doctor today who said that she would (possibly, all being well) in two weeks! It seems so quick now! On Monday, she is having her two month (!!) immunisations and then will come off the caffeine a couple of days later (Caffeine helps her breathe by stimulating the part of her brain that triggers breaths), then off the monitors and hopefully off the oxygen. That will be so scary! She had a brady today when I fed her and went quite blue for a moment, Im worried I wont notice them so much without the alarms, but then the alarms were switched off and I did notice it so I should be ok. I rubbed her chest and stimulated her and she was ok again, poor little thing. Didnt affect her eating though lol!

Thats all for now, must go to bed as I have an early start tomorrow, night all. Will post photos tomorrow as well.


video

Wednesday, 7 May 2008

Wednesday 7th May 3 Months old today!

Wow, and not even 2.5kgs! Niamh was great tonight, she fed really, really well. She was so alert and very cute :) Didnt want to leave her as usual but I wrapped her up so she could still suck her fingers which she was doing very noisily! She had been wearing the same outfit that I put on her yesterday morning so I changed her clothes and wiped her face. I couldnt get a photo of her tonight as the light was off and it was dark. Anthony has been feeling really run down this week, he has a rotten cold and feels rough poor thing. Must go to bed, back in the morning!

Tuesday 6th May Day 90!!!


Just got back from a night out with lovely, fellow premmie mums ;) So nice to go out with the girls and have a good laugh.

Niamh was so cute today (She always is though lol) She didnt feed well again which was a shame, but despite seeming to be so awake she was zonked after 5 minutes. There is no waking that girl once she is asleep! We tried a bottle but again just a few sucks before we gavaged her. Had to try though. I then gave her a bath which she loved and made her nice and comfy before I had to head off again.

By the time I did some shopping, got home, had lunch and expressed again, it was almost time to pick up Bailey from Childcare. The days fly by so fast, theres never enough time to do everything.

Its funny how you get through this experience, it feels like such a long time now. I almost don't remember when I didn't have to go to the hospital every day. Ive found I have to numb my mind to it all. If I dont think about it, it doesnt exist. The transistion to SCBU2 has been hard and not as great as I had hoped, but at the end of the day it is one step closer for Niamh to come home. In the scale of things its so trivial. I just can't wait to bring her home. I don't have the energy to battle anymore, I just want peace and quiet and for her to get well enough to leave.

Monday, 5 May 2008

Monday 5th May

Had a better day today, Im getting used to it in there, I think I was having a rough couple of days and everything seemed blown out of proportion. I can't wait for her to come home though!

Niamh fed much better today, thank you so much for all your comments, it is much appreciated! Caroline, if only it was two days away, I'll try and be patient though, its just getting harder to wait when we are so close! She fed for 30 minutes and was so awake though. I also heard her little cry today which is very tiny and sweet!

Sunday, 4 May 2008

Sunday 4th May

Niamh was too tired for a breastfeed today which was really frustrating. Poor little darling was so zonked I couldnt wake her. She has been having some desats while bottle feeding so her oxygen has been put up slightly to 0.02. Hopefully that will help her until she gets a bit bigger and gets the hang of sucking and breathing at the same time. It was horrible leaving her again today, but what else can we do? I'm going in tomorrow morning for another attempt at feeding her.

Saturday, 3 May 2008

Saturday 3rd May


Niamh has been moved into a side room. She was good overnight and woofed down her bottle feed as usual! She is such a good girl, can't wait to see her. I knew that this would be the hardest part and wasn't wrong. Now we can pick her up at will and dont need to keep asking permision its much harder to leave her.

Forgot to mention that my milk supply seems to be increasing slightly now that I am feeding her. Its only once a day but has made a small difference which is great! Now I'm starting to see the reward for all the stress and hard work it's been.
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Just did some more research on ROP. This web page is brilliant and explains it really well. The diagram at the bottom is exactly what Niamh has on her chart. She has Stage 1 Zone 3 which is the best case scenario for having it. Next week we will see if its progressed. The problem in more pronounced in her left eye.

http://www.tsbvi.edu/Outreach/seehear/winter98/rop.htm
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Updated 9pm
Niamh is in a side room now. It gives us privacy which is great. We spent most of the visit with the lights off to give her a break. She was too tired for a feed which was a shame so we gave her a gavage feed instead. I just phoned up for an update ( Which always feels like getting blood out of a stone) and she is asleep, thankfully with the lights off and bottled well at 8pm.

Back in tomorrow for her 11am feed.

Friday 2nd May 2008

Transition to SCBU 2

Niamh had her eyes tested today. Unfortunately Niamh has to have a repeat test in a week. They found a low level of ROP. Her doctor doesnt think she will need surgery but we can only wait and see.

Heres some information:

Retinopathy of Prematurity

The eyes of premature infants are especially vulnerable to injury after birth. A serious complication is called retinopathy of prematurity (ROP), which is abnormal growth of the blood vessels in an infant's eye. About 7% of babies weighing 1,250 grams (2.75 pounds) or less at birth develop ROP, and the resulting damage may range from mild (the need for glasses) to severe (blindness). The cause of ROP in premature infants is unknown. Although it was previously thought that too much oxygen was the primary problem, further research has shown that oxygen levels (either too low or too high) play only a contributing factor in the development of ROP. Premature babies receive eye exams in the NICU to check for ROP.

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On the plus side we had a great feed again today, she sucked for half an hour and just needed some small pauses to rest. She is such a fragile little thing, she had a small brady but I sat her up and rubbed her tummy and she recovered quickly. Im dreading the monitors coming off, Im worried I wont spot them in time to help her.

I was pretty stressed when I got home, it didn't help only having 3 hours sleep the night before and I took a couple of sleeping pills as I needed some sleep but was worried about having to leave her there.

I bought Niamhs cot mattress on the way home and some pretty sheets so I can get her room ready for her, I cant wait!

We were also very, very lucky to get a fantastic present from Anthony's mum and dad. It is a gorgeous Phil and Teds Dash that also has a toddler seat. Thankyou so much, we love it! Heres a picture although our one is bright red and funky! The toddler seat can also go on the front so that the back lays flat for a newborn.