Some photos

Just wanted to really quickly share some photos. We had a photo session with a really talented EB mum called Fiona who is setting up a photography business and was kind enough to do a "practice" photo shoot on my kids. These are just a few of the photos she has emailed me as a preview - I can't wait till we get all the images on a disk!! THANKYOU once again Fiona - the photos are fantastic and you are one talented mumma!!

My poor baby boy :(

Just a quick update - I don't seem to have much time these days for anything that doesn't revolve around babies and feeding!

Well we have just spent the last two days up at PMH again. I had noticed last Sunday that Blake had a really swollen groin area. I rang Murdoch hospital and spoke to a midwife there who said that some swelling was not abnormal but that if we were concerned to call Dr Crompton (our Paed.) and make an appointment. We already had an appointment booked with Dr Crompton for Wednesday anyhow so we decided to leave it till then and mention it at the appointment.

So Wednesday rolled around and Dr Crompton took a look at it. As soon as he saw it he diagnosed an ingual hernia (the intestines are pushed down through the canals where the testes descend and bulge into the groin where they don't belong.) This is caused by weak muscles and happens in about 3% of baby boys. He told us we would need to go up to PMH and see a surgeon to have it fixed. We left the appointment at Murdoch and went straight to the emergency room at PMH. After being assessed the Drs there told us that because they were able to manually reduce it (push it back in) it was not an emergency, but that he would need to be operated on within 24-48 hours or else there was a risk of damage to the intestines.

We got a phone call the next day to say that the op would be done on Friday morning. We had to be up at the hospital at 7.00am and Blake was first on the list at 8.15am. The operation went well but the poor little man was so unhappy when he came out :( every time he moved he screamed in pain - very uncharacteristic of him! By the afternoon he had settled a lot more though and we were happy with him by the time we left him there in the evening. It was so weird to walk away from that hospital on Friday night with only Max in the pram. It was a sad feeling and I think it felt even more wrong to me than all those other times we walked away without babies. Perhaps it was because we were leaving only one baby behind on his own and I was worried he would be lonely and sad :(

After a strange night at home we woke up today and went to PMH to bring Blake home again. It took a little longer than expected to get the doctors to let us go home because they were concerned about the monitors picking up more desats but they were only happening when he was feeding and we were convinced that they were nothing more than what was happening weeks ago when we were discharged from ward 6b. After calling the neonates ward and asking about the history and calling Dr Crompton the Doctors on 5d were happy enough to let us go home but have told us that Dr Crompton wants to see us on Monday.

So - that has been the last few days for us. Hopefully that will be the last time we need to stay in hospital too!

Oh....my....god!!!!!

I think I have found a new level of tired! Having had three children before you would think I would be familiar with the whole newborn/parental sleep deprivation situation but no..... having twins is much much worse! It's not twice as bad it feels about a hundred times worse and that just leaves me afraid because I know the worst is still to come! The babies are good babies and settle well between feeds at the moment, They are not really awake anough yet to have marathon screaming sessions but i am worried that we are yet to experience all of that :)

At the moment we are just struggling to get through the day (and night) with our sanity intact. Most of the day is taken up with feeding and changing the babies and trying to offer a little bit of attention to the other kids. The babies are taking about an hour and a half to feed and settle again and then I am still expressing after each feed. Through the night I then have less than an hour and a half to sleep before it all starts again. Dan and I are trying to do a shift each at night time and that is fine at the moment but next week he goes back to work - then things should get interesting!!

I don't want to sound like I am complaining though - I am really so very happy that my babies are here with me and I count my blessings each day that they are healthy and here, in our family where they belong.

I just wanted to take this opportunty to thank some people too. I have had soooo much support from my friends online and in real life so thankyou to everyone who sent me messages and emails and left messages on the blog. I may not have responded at the time but those messages of support really helped me through all of this drama. I'm not sure if they would ever read this or not but a HUGE thankyou to all of the medical staff that we have encountered through the last 8 weeks aswell! I can't begin to say how greatful I am to each and every one of the nurses and drs that we have seen and that have cared for our babies. Going through this experience has reminded us to be thankful that we live in this great country where such fantastic health care is available to us and in particular to these precious little babies born early. Finally my most MASSIVE THANKYOU goes to my wonderful family who have been there for not only me but Dan and our children aswell every step of the way. My parents have been a pillar of strength for me and basically moved in and cared for our children while we were unable to be there. Mum has wiped noses and bums, cleaned my house, cooked meals done my washing and supported us emotionally this whole time and I know I can count on her to continue to do so through the trying months ahead - so thankyou mum!!! (and Dad too, of course!!) To my Sister Kim, who despite having her own family commitments is also there for me whenever I need her and has helped out on countless occasions with the kids while I was occupied at the hospital. She and her family also continue to support us now that the boys are home so thankyou!!! Also to my beautiful friends and Family who have been there supporting and helping me along the way and who I appreciate so much - Aunty Jill, Wendy, Julie, Dana (who came and stayed for a week to help out :) )and Rod, Alan and Janette... there are just so many people that I really hope I didn't miss anyone out. You all know who you are and I just had to say a huge thanks to you all for caring.

OK, enough soppy rambling - I really NEED sleep now,LOL! I will try to update again soon but obviously posts are few and far between for me right now.

M.

a new chapter....

Just a really quick post as I should be sleeping while I can....

I am so pleased to announce that Max and Blake are home with us where they belong!! :D

I can't begin to say how happy I am to have them home and be a "real" mum to them. I love to see them snuggled up together in their own cot and know that I get to cuddle and kiss them whenever I want to! I don't so much love the way it takes an hour and a half to feed them both and settle them, leaving only an hour or so until I need to wake them and start all over again but it's a small price to pay for having two such beautiful little men at home with us! I think I will be reminded each and every time I look at them, what a miracle they truly are and how lucky we are to be blessed with them - with all of our beautiful children actually :)

Anyhow, enough soppy-ness. I really need to sleep!

M.

Almost at the finish line!

The next time I log in I could have the babies at home with me!! I have a thousand things to organise but I am very excited to report that the hospital has told us today that we can board there tomorrow night and the next night and then (all being well) bring the babies home on Monday!!

Aaaaarrrggghhhh! I have so much to organise here tonight because I will be out of the house early in the morning and won't be back for a few days - then I will be very very busy with two newborns to deal with!

Wish me luck!!

M.

PS - to those who know me IRL and might be interested in visiting to meet our little men, please note - we plan on doing a "meet Max and Blake" open day at our house about a week after we get them home. We will let you all know the date and times and we would love to see you there.

The first photo is Max, the second one Blake. Taken yesterday 5/7/07.

Progress report :)

I haven't really updated where the boys are at for a few days now....

After things dragging on for so long up at PMH we have noticed a real difference now that the babies are at SJOG Murdoch. Since arriving there the other day they have been taken off of all monitoring - so that means although they may still be having small desats they are no longer being monitored. When we asked the Dr about why he said that they have to be taken off monitoring at some point and that they can see by watching them that these desats are nothing major as they don't cause a colour change or distress in the bubs. So that is good news! We can now cuddle them without any wires attached at all :) The only thing left is the NG tube and hopefully that won't be in too much longer either.

They have also been offering suck feeds at every feed and although they are very sleepy and tired they are managing to suck most feeds and have not had a tube feed for half a day now. Hopefully they will manage to get through by being woken for bottle/breast feeds every feed and then after a while they can have the tubes taken out. I can't wait to see their little faces without all that tape all over them for the first time - then we can see what they really look like!

The final change is that they have stopped the thickening of the milk in bottles. Up at PMH the Drs and Nurses had diagnosed them as having reflux (apparently very common in premmies anyway) and although they weren't throwing up their feeds you can see that they do seem to have "silent" relux where the feeds still come up and burn them. They make the little squeaky noises and coughing that seems to indicate the reflux. The PMH Drs decided to add thickener to the feeds but as Murdoch didn't have any thinckener and the bubs went without it for the first night, they decided they didn't need it. They didn't notice any difference in them either with or wothout the thickener so it makes no difference really! At this point that all seems fine and the bubs seem no worse without it so I am happy with that.

All in all pretty good progress I would say!! It really shouldn't be too long before we get told we can bring them home now and that actually makes me very nervous. I am scared that I won't be able to be a good mum to two babies at once. I am scared that I might not be able to look after them as well as they have been looked after in hospital. I am scared that they are more fragile than my other babies have ever been and that they might be more at risk for illness or SIDS. I am scared that I won't be able to feed them the way I want to and will have to give them formula. I am excited, I am just nervous!

M.

It's all good

OK, I have to apologize for my last post. I was feeling very down and grumpy that night and had to stay away for a few days to recover but I report in today with some good news. Although we were expecting it to happen later in the week we got a phone call today at about lunch time from PMH saying that Max and Blake could be transferred this afternoon! We found out that the transfer was happening at 2.30pm and so we decided to go and meet them at St John of God, Murdoch when they arrived.

We spent the afternoon settling them into their new beds and giving them a feed before we came home to the other kids and relieved Grandma and Grandad! So all is good. The boys are one step closer to home and although I am still feeling pretty flat and miserable about it all I can see the light at the end of the tunnel and looking forward to the day we get to start our real (busy) family life.

M.

GRRRRRRR!

I am really thoroughly and utterly pissed off! I am so sick of everything :(

Today we walked into the nursery at the hospital to be told by one of the nurses "I have just given them a bath" - WHAT THE HELL?? Blake has only ever had one bath and Max still hadn't had his first ever bath yet - I was waiting until I was allowed to do it!! I had stressed to the nurses the other day that I wanted to do his first bath but then this woman just goes ahead and does it without any thought to how the parents might feel! I am actually in tears again thinking about it and I know it sounds silly and that in the long run it is of no real consequence but I am just so disappointed :( Everything has been taken off me from the moment these boys were born and this is just one more "first" that I don't get to experience and there really was no reason that I couldn't have. I am sick of feeling so bloody useless there and not having control of my own babies. IT"S NOT FAIR!!!! They are stealing my memories :(

The other thing that we are majorly peeved about is how the left hand doesn't seem to know what the right hand is doing up there at that hospital. The nurses are generally fantastic and they work really hard but as parents it is so frustrating to be told different things by each nurse that starts a shift there. The trouble seems to stem from the fact that there are so many agency nurses and casual nurses that come in to do shifts. They haven't worked with neonates all that much and they all do things differently. The major frustration today was that although we were witnessing desats on the monitors the nurse looking after them was not recording them at all. When we queried this she told us that her 30 years of experience tell her that they mean nothing (as they are fleeting, and self resolving) and so she doesn't need to record them! Well that's fine but they are no different to the ones that were occurring the other day when the nurse on duty was recording every single one. Those charts are the only things that the Drs use to determine a course of action for these babies so if they are supposed to be recorded or not - I don't care but it would be nice if it was at least consistent.

My final gripe was with the stupid nurse that was on last night. She really must have been on another planet because she was told quite a few times that we were alternating tube and suck feeds yesterday afternoon. Blake was almost due for a tube when Dan and I went downstairs for a coffee and I told her as much when I left the room. When we walked back in what do I find but her sitting there with a bottle shoved in his mouth!! I don't mind if he is awake and looking for it but believe me - he wasn't! She ended up needing to tube the rest of it anyway as he just wasn't waking up for it!! I explained again that we are meant to be alternating tube and bottle feeds to give them a 6 hour break between having to work for their suck feeds as I was concerned that the desats might have been caused by tiredness. Anyway, this morning we check the charts to see that the comments box for every hour last night state "asleep" in each one but they were offered a bottle at each feed anyway - that means she woke them up every feed instead of letting them sleep for every second one!!! GRRRRR! How hard is it????

Anyhow - sorry for the negative post - I am just really fed up at the moment and I want my babies home :(

M.