28.02.2009

Today is the day I was due to give birth. And on that, I only have two things to say.

1. Thank God it's over
2. Thank God I never have to do that again

:)

But of course it was all more than worth it.

[4 weeks old]

Tomorrow Amelia will be 5 weeks old. And tomorrow is the day she was due to be born :)

This week she's had her hearing test back at Frankston. All went well with that. She just has to have another one later in the year because she was on antibiotics for the first 5 days of her life and apparently antibiotics in early infancy are linked to hearing loss... they didn't tell me that at the time, but then again they were thinking her lungs were about to colapse, so we didn't have much choice anyway. But, so far so good. We're hoping this little miss has given us all the worry that she's going to.

We also had her appointment with her cardiologist again. In a nut shell, everything is going good, so we are going to keep doing the same and see him again in a few weeks. In the mean time he's written to Frankston Hospital introducing/explaining her so we can go there in emergencies as it's 1.5hrs closer than RCH. She'll still end up at RCH, but at the time of emergency we'll at least be able to get her to the closest big hospital to ger her stable before transferring up to RCH. Some babies can start to be worn off the meds, but as she had it quite bad (she had 1-2 episodes every 24hours, comared to 1 or 2 episodes ever) so he's not even looking at reducing her meds until she's at least 12mths old, and they'll be increased/changed as needed in that time.

We ended up taking the boys up with us to RCH. They've never been on a train before and with peak hour traffic we decided the train would be easier. Brett carried Millie in the sling and she loved it. The boys just loved the train as we knew they would. (much more fun than going to school).

I've become very good at checking her heart now. Used to take me quite a few minutes, now I have it with the stethescope within a few seconds, or if I don't have the stethescope on me I can just check her pulse in her upper arm or ankle.

Some piccies of our princess settling in at home:

Her playmat.

Little Brett or what! Toland frown there.

Proud big brother. He just adores her:

Awwww *sniff*

"love you Bemelia, you're so cuuuute, and gorgeous and bootiful"

In her swing (thanks Aunty Sammy and Aunty Sharnie) xx

Mumma cuddles (again!)

And some photo plays (natural light):

24.02.2009 [1 month old]

HAPPY ONE MONTH BIRTHDAY MILLY!

Geez what a month it's been! You can tell she's nearing her due date. She's actually opening her eyes for a little while each day now and looking around. She seriously did not open her eyes for more than a second before and that was usually only when someone jabbed her with a needle. She's also developing her cry. Up until a few days ago (probably even yesterday really) she sounded more like a squeeky toy... or a lamb. But now she's got a cry. And boy did she use it overnight! OK, so she wasnt' that bad, she settles very quick after feeding and generally only cries if she has wind, or is hungry. But last night she was hungry every 1.5-2hours! I'm stuffed LOL Thank goodness Brett is still home and could do the boys. Lord knows what they have gone to school and childcare actually looking like, but hey, beggers (or sleepers) can't be choosers ;)

Last night after her medicine she did a massive chuck. Great... so how much of her meds did she throw up? We can't just give her more because it can slow down her heart too much. Too much medicine is more dangerous than not enough, so we kept an eye on her all night and gave her this mornings dose. All was well and she's still ticking along nicely.

She has her hearing screen today. She was supposed to have it before she left special care, but seeing as she was rushed out of there in the middle of the night it didn't get done. Then it was assumed she'd go back there after RCH so would have it done there. But we skipped that and ended up going straight home. So we have to go back and have it done today.

Then tomorrow back up to RCH to see her cardiologist again. We have to be there at 9.45am. Hmmm so that means we have to drop Liam off at a neighbours at about 6.30am (who will then take him to school) and then drop Ethan off at mum's at 7.00am (who will take him to kinder later on) and then leave for the peak hour rush to get to Melbourne.

I have some snaps of Amelia I'll add soon (when I download them - I hate downloading pics and I'm so lazy about doing it.)

Must get ready for hearing test.

20.02.2009 [27 days old]

The Maternal Child Health Nurse came to visit today for Amelia's first official checkup. Poor child is almost a month old and has not had her newborn exam, or her two week assessment recorded - but with the amount of tests she's had, I'm sure we have all the details, just on a million pieces of paper instead of in her neat little book.

She's doing wonderfully. Still feeding 3 hourly, although last night she fed at 11pm then not again until 3am and then 7am. The night before she'd fed almost every hour and I was stuffed by morning, then she decided she was going to sleep all day and I decided she wasn't. She won. It's actually REALLY hard to wake a baby up if they don't want too LOL. So I was thinking I'd have another marathon feed night, but she was good to me.

As of today (just after a feed) she weighed 3070g (6lb 7oz)... We've popped the 3kg mark :) She put on 190g in 8 days (much better than Liam's 10g a week!) I don't have a lenth for her yet. Sure I could measure her myself, but who has time to worry about that, and third baby... it's not like shes going to be shrinking.

I had to pack up one of her suits. She outgrew it already :( Brett's sister bought her some tiny clothes when she was born, but she only ended up wearing clothes once at Frankston, and not for long. They constantly need access to the tubes and wires and stickies, so it's easier to just have them nude, and being in the isolette, she was warm.

Now, my next predicament... I need a photo for a canvas. And I can't choose. Any opinions on either of these, or any from the last set? I also need to choose a photo for her (our) thankyou's and as much as I love these, the first thing people comment on when they see her is her hair, and there will be thankyou's going out to people who have never seen her, so as much as I love this hat, I need a pic with her hair showing. I took some more tonight, but she looks like a boy in them LOL Need some pink. (did I just say that?)

OK, I need sleep. And she's just waking up.

18.02.2009

Just for the record... I don't think I've ever mentioned that Amelia has two birth weights. I think in the rush to get her to special care someone got mixed up. She has both 2640g and 2685g recorded. I've just looked through photos of her birth and I remembered telling Brett to get a pic of the numbers on the scales when he went up to special care with her. The pic I have says 2685g. Also just did a google for the pounds conversion (especially for GG lol) and it makes her 5lb 9oz.

Yesterday while Liam was at school and Ethan was at childcare Brett, Amelia and I hit the shops to get our girl some smaller clothes. 4x0 Bonds Wondersuits fit her perfectly, but we've always used them as pj's, and well I don't want her in her jammies all day long. (even if she is asleep all day long!) And yes... I got pink. I nearly bought red in one suit and then decided to go for the pink. It's happening already LOL (for those who didn't know, I didn't really like pink before Miss Milly).

Today I had to go into Medicare to put in the forms for Amelia. Talk about jumping through hoops. Woman in there made me want to cry. Can't believe I've held myself together for the past three and a half weeks (although I did cry a lot in those weeks) and now the woman in Medicare makes me want to cry LOL. What's with that? Can I blame it on hormones still?

Well better go read with the boys before Amelia wakes up for a feed. She's been asleep 3.5hours now. I want to wake her up so I can cuddle her LOL. Naughty mummy.

13-17.02.2009 [20-24 days old]

Just an update to say all is still going well. Amelia has now gone over one week with no SVT. We're being very diligent with her meds, and thankfully she takes them well with no fuss at all. They have to be given at 8am and 8pm on the dot, so thankfully she even takes it in her sleep quite happily. We check her heart every time we feed/change her, which is every 3hours at the moment. It's all becoming less daunting as time goes on. So far she's such an easy baby. She just grizzles every 3hours to let us know she's awake and would like some food, and because she's still very little she needs to be fed frequently still. When ever anyone sees her they always comment on how tiny she is, but to Brett and I she has grown SO much! Looking at her feet I know they are so much bigger than they were when she was born. I wish I could have stamped her footprints when she was born, but obviously with IV's and all the technical bits on her feet it would have been next to impossible, had I even had the thought or energy to have done it then. There were much more important matters on my mind then hey LOL.

We have our appointment booked for next week with the Cardiologist, so yet another trip back into the city. While the travel back and forth each day may be exhausting, there are a heck of a lot of families in the Cardiac ward where Amelia was, who all travel from interstate, leaving behind a lot of their family and support people. And there is nothing like a trip around the RCH to realise, that we are so, so lucky. We have NOTHING to worry about, when we see other families. Don't get me wrong, at the time it's all happening, it's as scariest thing in the world, but putting things into perspective sure helps you move forward.

Liam got Student of the Week last week for 'adapting so well during his first week back at school, with a new baby in the family and mum away at the Royal Childrens Hospital' I thought that was so sweet of them to recognise him like that. Made him feel very special.

Ethan is still enjoying kinder. He has a little cold at the moment, so hopefully he doesn't decide to share it with Amelia, and it stays little and is gone quick.

Brett... well he pretty much shaved his head. That's about all the news I can think of for him right now. But he's good. He's always good :)

Miss Milly and I had a very quick play with some piccies the other day. I bought the beanie while I was pregnant and wondered if her head would fit into that tiny beanie... needless to say the beanie is HUGE on her. I just adore that hat, fell in love with it the second I found it, and had to have it... regardless of the ridiculous amount I paid for it LOL. I also bought a new lens while I was pregnant. I bought it at the start of December and just wanted it delivered by the time she was born. Huge mixup, they ordered the wrong one from Nikon, took forever to get to here and then, as you know, baby decided to try and arrive 6 weeks early. But with perfect timing Brett bought the lens in to hospital the day before she was born. But then I hardly used it, so this is my first play with it really, and still making friends with it.

12.02.2009 [19 days old]

Guess what!...

SHE'S HOME!!!

They had said to me on Tuesday there was a possiblity she could be comming home on Thursday as long as everything continued to go well. We knew how quickly everything could turn around though, so we decided not to tell the boys until we knew for sure she was comming home, as Liam would have just been devistated if he knew, and then she didn't come home. Mum was with me when the docs told me, so only mum, Brett and I knew. Then Wednesdays ECG showed up the extra signals in the top chambers, and that put a question mark on whether she'd come home or not. I couldn't even let myself think about her comming home. She had to wear the holter monitor for 24hours, and then have Thursdays ECG, and there was not allowed to be ONE hickup on either of those. Brett took Thursday off to come in. We hid the capsule in the boot of the car, dropped Liam off at school, dropped Ethan off at Brett's parents and headed up to the city. They took the Holter monitor off her before the 24hours, and went off to download/read it, and the Cardio came to do the ECG (was like watching grass grow). The doc came in to take the ECG printout and went off to read it. About 30mins later she came in waving. I looked at her a bit puzzled I think, because she said "I'm waving goodbye! You're free to go!!" OMG EXCITED!! Just one more visit from the pharmacist to explain about her drugs and we packed her up and headed home. It took us over 3hours to get to Brett's parents place. It took us 1hr to get from Flemington Road (RCH) to the casino! And the whole way I was constantly turning around and checking on her like a nervous first time mum. LOL

It was 7pm by the time we got to Brett's parents. They got the shock of their lives when they saw Brett standing at the door and realised he was holding her. There were tears everywhere, which was so beautiful. She had lots of cuddles while we ate our dinner, and then packed everyone into the car (they'd picked up Liam from school) and then headed off to show GG (Great Gran/Brett's Nanna), who had never seen her yet.

Finally about 10.30pm we got home. It's SO NICE to be a complete family, all together under one roof.

Oh and should add the original plan was that once RCH had her heart issues sorted out she was supposed to head back to Frankston to get her feeding and any remaining premmie issues sorted out. But she's feeding so beautifully we were able to bypass Frankston and head straight home :)

11.02.2009 [18 days old]

Her daily ECG this morning showed impulses comming from a few different areas in the top chambers (it should only come from one). The extra impulses were being corrected by the central node and only it was only letting one impulse out (making one heart beat, which is what we want). So the central node is doing it's job, and filtering out the extra impulses, not letting them become extra heartbeats. At the moment it's not causing a problem, but they want her to wear a halter monitor for another 24hours, (so they can download everything her heart has done for the 24 hours and study it) to check it out and decide whether it will be a problem or not. As of 4pm this afternoon, when we left the hospital, the cardio's had still not been up to put it on.

Such a waiting game...

Oh, and for some reason her cardiologist has been changed again and she's back under Rob again instead of Andrew. Have no idea why that is.

10.02.2009 [17 days old]

No SVT's overnight or today. Docs are starting to discuss discharge plan, which includes training me to use the stethescope and be able to check her heartrate, what to do when she's in SVT, when the panic and when not to, how to administer her meds and a possible date for discharge.

She's feeding beautifully. Breast feeding if I'm there, and bottle with Haberman teat if I'm not there. She's maintaining her temp quite well now. She had moments where her heartrate will drop too low (around 70bmp), but it comes back up on it's own after a few seconds. They don't seem too concerned about it.

Mum and I gave her a bath today. Mum comes in with me most days, as Brett is back at work. It's a two person job to bath her, as someone needs to hold her IV arm out of the water. She LOVES her baths, and usually falls asleep in them. Actually she just usually sleeps full stop. The nurses all say she's so easy. All she does is eat, sleep and poo. Hopefully she'll keep that up when we do eventually get home :) They are also impressed with her feeding now that she's sucking. They say she drinks beautifully from the bottle, is done in 10mins, sits up and burbs then goes off to sleep. She's such a sweet little angel. Her nurses are all so in love with her too LOL. One of her nurses came into me at 6am on Sunday morning, when I was feeding her, and they'd just been doing their change over. She said "they're all out there talking about how pretty your baby is" LOL Of course I think she's adorable anyway.

Need to download photos and add some to previous posts, so will just bath the boys and then do that.

09.02.09 [16 days old]

She made it all day and night Saturday, all day and night Sunday with no SVT, and then had another one at 7.30am Monday morning. Meds are upped and we wait again.

Temp wise, she's starting to hold her temp, but needs to be heavily wrapped. At night she still needs the heater on in her cot.

My sister came in with me todat, but I didn't get a pic of her with Amelia unfortunatly. Dad had a meeting in the city too, so he came up after that and had his first cuddle too.


Nasel gastric tube out! How sweet are those lips.

Poppy cuddles.

08.02.2009 [15 days old]

Staying overnight has the advantage of being able to catch the Doctors doing their rounds in the morning, as I have buckley's chance of getting in to RCH by 8am. They were happy there were still no SVT's, but it's still early on the new drug. They thought they were winning on Propanalol for a while there, and then she had another episode of it. They are very happy that she is breastfeeding and topping up with Haberman teat. Nasel gastric tube can come out! The IV needs to stay in until she goes home though, as they need access to her vein to put the Adenosine in if needed. Her heartrate is a bit lower on the Sotalol - around 102bmp. Today we dressed her in a shortie suit (short sleeve because of the IV) and wapped her, then switched off the heater on her cot, to test if she can hold her own temp. She got a bit cold (36.1), so they added a blanket, and she was doing ok. See how she goes over night and she may be able to go into an open cot.

Brett's parents came in to visit and had their first cuddle of her.

15 days old already. It's going so fast! I have to keep telling myself that she really shouldn't still be here yet. But so much for taking nice curly newborn photos before she was 10 days old. Wasn't really counting on those pice being in a hospital, with tubes and wires LOL. I'm sure I'll make up for it soon enough.

My sister is comming in with me tomorrow.

07.02.2009 [2 weeks old]

Happy two week birthday sweetheart :) xx

Amelia's cardiologist has been changed. She's been picked up by Andrew Davies who is the rythem specialist at RCH, and specialises in SVT. So that has to be a good thing. Today he ordered daily ECG's be done, and changed her drug from Propanalol to Sotalol. (more for my recods as I'm sure it doesn't interest anyone else). Propanalol is short acting, so it's the drug they always start on, incase there is a problem with it, it's out of their system sooner. Once they can tolerate that, they can be changed to other drugs if needed. The Propanalol was still not working on Amelia even after 3x 3ml doeses a day, so she's now on 2x 3ml doses of Sotalol. So far, so good. I stayed in the hospital overnight and breast fed her every 3hours. Most feeds she'll take about 25ml from the breast and then needs to be topped up with the other 25ml via her nasel gastric tube or bottle with Haberman teat. So far today, so good. No SVT's since the one on my lap yesterday.


Eyes open! It doesn't happen often.

more mumma cuddles:

06.02.2009 [13 days old]

Mum came into the hospital with me again today. I was able to breastfeed Amelia twice which was nice. I've had lots of people say to me 'why bother' and 'you have enough on your plate without worrying about that' etc, but I really want to breast feed her. I wanted to before she was born, but after giving birth to her and not even being able to touch her for almost a week, let alone cuddle her, I'm really craving that contact with her. So we'll give it our best and see what happens :) Plus the fact that she was having tummy trouble for a while, I didn't want her having formula that was harder for her to digest. So today I breastfed her at 11am and again at 2pm. At 2.30pm, just after her 2pm feed she was lying on a pillow on my lap, looking lovley and relaxed when all of a sudden the alams all went nuts. I asked mum what the monitor was saying (it was behind me from where I was sitting) and she said 'it's 275'. I said 'that's it, she's in SVT' and the next second nurses, docs and cardios all came running in. I swear she looked no different at all. I would never have knows she was in SVT if the alarms didn't go off, which really scared me. They took her out of my arms, put her on her bed and checked her over before icing her. I can not tell you how horrid it is to see that happen. She didn't respond to the ice, so they injected the Adenosine into her IV. Within seconds her heart rate dropped back down to 120ish, and then she threw up everywhere. Her Dr said if it happens at home we have to call an ambulance, ice her until the ambulance gets there and if she's still not out of it, then the ambo's will be able to give her the adenosine. It needs to go into her vein, so it's not something I can give. After an episode of it, she will need to go back into hopsital to have her drugs changed, as they are obviously not holding her out of it anymore. It was not nice to see at all, and Friday night I just didn't have it in me to type it all out here again - hence the late update.

5.02.09 [12 days old]

Ethan had a great first day at kinder. It was only a short session to start with, but he loved it, and he's back again this afternoon, and looking forward to that. He's 4 today!! Happy birthday my big boy. He had a family party on Saturday at my sisters house, and so tonight we're just having birthday cake after dinner, and a few neighbours are popping in for cake.

Liam's enjoying grade 1, although he's been a bit nervous in the mornings. He's settling in well once he's there and found some friends.

Amelia: We went up to visit her last night as soon as Brett got home from work. She's just so beautiful. I really, really needed to just hold her and touch her. I missed her so much. I held her till I couldn't keep my eyes open anymore and then we headed home. I crashed into bed the second I walked in the door and then slept through my alarm (and Brett's alarm too) this morning. Woke just in time to get Liam ready and off to school. Amelia had one episode of SVT overnight, but thankfully it was short (about 20 seconds) and then she came out of it on her own. I think I mentioned yesterday that her drugs had been increased. Her nurse last night said it could take months to get her drugs right :( I'm trying not to look too far into the future at the moment. Will download some pics and try and get them up here today.

PM update: She had another SVT at 9.20am (obviously RCH are not going to call me when she has them!) She had to be given adenosine again to bring her out of it. She's now on 3ml of Propanalol (was on 1ml initially then 2ml). If she has another one overnight she'll be put on a different drug tomorrow (satalol?)

03.02.09 [10 days old]

She had a good night last night, no SVT's. Mum and I went into the hospital and she was great all day. She wouldn't suck today though, her nurses said most likley because she's jaundiced and sleepy. Spoke to her cardiologist who was lovley and very re-assuring. Spoke about the drug she's on now, that they are upping the dose, and if she tolerates it will change to another drug which only has to be given once a day, instead of three times a day. Had a lesson in listening to her heart, and they described the best way to bring her out of an SVT, by icing her and how to do it, and that when it happens we need to get her out of it and then ring an ambulance to take her to RCH. I came home, picked up the boys, did dinner, baths etc and got them into bed.

At 10.30 the hospital called. She had another SVT at 9.10. They iced her and she didn't come around, so they used the gag reflex and she still didn't come around. So they had to inject her with drugs to bring her out of it. What the hell is wrong with my baby! How the hell can I take care of her?

ETA: I woke just after 4am, with a gut feeling I needed to call the hospital. I called and she'd just had another episode. Again, they had to use the drugs to get it down. Called again later in the morning and got one of the nurses to explain about the meds a bit better to me. Basically they are upping the dose she's on, but that have to do it very slowly because it can cause her heart to beat too slow, and also reduces her blood sugar levels. It's killing me to not be in there today, but it's Ethan's first day of kinder (yeah, that's right - remember those poor other kids I also have!) and I really want to be there to take him to kinder on his first day. It's also his birthday tomorrow. We had a smallish party planned, which got downscaled to family only party when Amelia arrived... which then was pretty much cancelled when she was taken to RCH. Thankfully my sister stepped in and had it at her house, so although Brett and I couldn't be there, Ethy still got his birthday cake (made by my SIL) and spent a fun afternoon with his all of cousins and grandparents - both mine and Brett's side.

All of our family and friends have been so wonderful. From the minute my waters broke the boys have been passed around from house to house, we've had dinners delivered... everything we could need and more has been offered. We are so greatful. And the presents... the mailbox is full almost every day LOL Thankyou so much for the beautiful gifts. Now we just need to get Miss Milly sorted out and home!

More photos:

Mumma cuddles.

Nanna cuddles: (mum has been awsome, dropping everything to come in each day with me so I don't have to do it all alone - plus I think she likes the cuddles ;) ).

Her heater bed. One of those zillion wires is a thermometer which attaches to the heater and the heater adjusts itself to keep her at the right temp. Very clever hey :)

02.02.09

Well my little girl has SVT (Supraventricular tachycardia). Basically the electrical impulses in her heart go a little nuts sometimes. There's no trigger for it for her, and not always any signs that it's going on. She has to go onto beta blocking meds, which will reduce her heart rate all the time, and hopefully prevent it happening. We had to buy a stethescope, and every time we change her nappy or at any time she looks 'different' check her heart. Ice her if needed and call Royal Childrens.... well that's what we've been told so far anyway. Do you think I'm going to sleep AT ALL from now on? This is my third baby. I was supposed to be so relaxed and enjoy her so much. And now I'm just freaking scared! Around 12 months of age they can sometimes start to wean off meds. I can not tell you how much I hope and pray that it's something she will grow out of. It's not related to being prem.

On the up side today she had her first breast feed. If she's been well enough to handle lately we've been trying to get her to latch on, while she's tube fed. She never sucks though. Today the nurse asked if we should weigh her first (so they can see how much she drinks) and we said 'nah, she won't drink'. Well what do you know, she went on and sucked for about 20 minutes (out of about 30mins she was on). So proud of her. I am so in love with her. She's every thing I dreamed of. I hate that she's not here with me, that she's not well. I know it's not the worst thing in the world, and I'm probably feeling it worse at the moment because I'm feeling a bit emotionally drained and exhausted.

She's still at RCH and will be while they work out her meds, and then will hopefully be sent back to Frankston.