Two peas in a pod!

Well it's official! My little guys are genetically identical according to the DNA testing that was done in the 'tooth emergence and oral health in twins and their families' study that we are enrolled in.

The results specifically say that the boys share 20 of the 20 Alleles tested in common. The 20 alleles tested cover 10 loci with one allele coming from mum and one from dad. Of the 10 loci tested Max and Blake have all 10 loci exactly the same. The likelihood of Max and Blake sharing all 20 alleles at these loci by chance and being different at other loci (being non-identical) is extremely low - less than 1 in 10,000 Billion in the case of our twins!

So there you go! I can't say I am really surprised as some days even I struggle to tell who is who but in general I can see differences between the boys. If they are side by side I can tell you fairly accurately which one is which.

PMH developmental appointment

Today we had the twins' 4 month developmental appointment at PMH. It seriously couldn't have gone better and I am one happy mumma :)

We were told that they seem to be at the level of about 5 month olds - which is fantastic considering their corrected age is 4 months! They are doing everything right and I feel like it's safe to say that their prematurity hasn't left either of them with any negative health issues. Even though we already suspected they were fine it is such a relief to be told by a paed.I am so proud of my clever little men!

Just yesterday and today Max has learned a new party trick. Whenever he is placed down on his back he immediately rolls over onto his tummy (and then proceeds to whinge - LOL!)

Oh - and I knew they were a 'healthy' weight but get this.... Max weighs 8.53 kilos and Blake weighs 8.54 kilos, little chubbas!!

photos

Silly season continues!

You should see our family calendar for the rest of this year!! Talk about crazy busy!! It's only 5 sleeps till Lachlan's 6th birthday (as he keeps reminding us, hee hee!) and I have got about a tonne of house cleaning and organising to do before then.

Things here have been good. Max and Blake seem to be finally getting over the horrible cold that was bothering them for so long. It was obviously just a cold because it is now settling but it lasted for weeks and we had them up at the GP after hours (at the hospital) three times just to make sure. They are still a little wheezy but thankfully not choking any more at night time and their nasty coughs seem to have calmed down.

They are such good little babes really! They never ask for anything - just lie there happy most of the time and only cry when they are ready for food or sleep! They are still not rolling at all but I don't think it will be too long now. They are also starting to pay a lot of attention to us when we eat in front of them so not too much longer and I think they might be ready to try solids too (I will try to wait till they are 6 months corrected but we'll see how we go!) We have an appointment next week at PMH to follow up on their development so it should be interesting to see what they say there (I bet they will wonder if we even brought the right babies with us, LOL!)

The other kids are going great too - all very excited about the end of year, christmas and birthdays! They are constantly talking about the presents they want (hmm, I think a little education on the meaning of christmas is required in this house, LOL!) and I know the big boys are aware that there are things hidden in my walk in robe as they tend to have a rather increased interest in that area of my bedroom - GRRR! I might have to tell them that santa will see if they snoop in the wardrobe and he will return all their presents to the north pole!!

well, I was going to post a bigger update but as usual I am being screamed at by a few kids so I'd better go! I will be back later to add some photos!

M.

Silly season kicks off!

I am just about to embark on the crazy silly season that is November/December in our house! It is Niamh's birthday on Friday so I am busy preparing for her party on Sunday - after that we have Lachlan's birthday then Cody's birthday then of course Christmas! The kids are all soooo wound up about it and can't wait - I, on the other hand, am a little afraid - LOL!

I have been busy lately doing all the christmas/birthday shopping with the help of my wonderful mum! It is so exhausting trying to achieve massive amounts of shopping while keeping two whingy toddlers and two babies happy. I am pleased to say that it is all but finished now and I should only need to go out one more (well planned) time and I will be done. I must also get onto the wrapping as I don't want to be stuck wrapping hundreds of presents on christmas eve this year!

The kids are all doing really well. Max and Blake have had really awful colds and horrible choking coughs this week but I am really hoping that they will start coming out the other side of it soon. other than that they are doing well - they weigh about 7kilos at last weigh in so that is huge! They have come so far since those early days that it is almost hard to believe they went through what they did. I am so proud of what strong little fighters they are :) I think they are actually starting to get a little bit bored when they are awake now. It's not safe for me to put them on the floor (Niamh 'loves' them a little rough!) so I think they are almost ready for their activity centre thingies (my friend Julie bought one for us when the boys were born and we already had one from Niamh!) Maybe just a few more weeks and they will have better torso control - then they will really enjoy them.

Lachlan is almost at the end of his school year - then my baby will be moving up into the big school and be a big year one boy! I can't believe how fast he's growing too. I am really noticing his attitude changing a lot lately - he is wanting a little bit of independence and becoming much more aware of what is 'cool' amongst his peers. I must remember to give him lots of extra cuddles because I know it will be all too soon that he decides he is too big for that too :(

Cody is..... well..... Cody is Cody! he is a ratbag but he keeps us amused all the time. He will be off to kindy two days a week next year and I think it will be great for him. He seems to be bored at home and when he is bored he makes his own entertainment by tormenting his siter (and his mother!) I think he's going to really love school - he already adores his 'kindy' (a three year old program he attends for three ours every Thursday) and he is such a chatty social little guy that I know he won't have any problems making friends and fitting in.

Niamh is my gorgeous baby girl who is now TWO!! I can't believe how fast she is changing too - she is a real little mummy and loves to follow me around the house playing with her babies (dolls) and doing all the things that I do. I have bought her the most gorgeous little play kitchen for her birthday and I really hope she likes it! I can see her getting lots of use out of it for many years to come and it is the most adorable chunky wood in pastel girly colours - really cute!! (sounds like I want to play with it huh?)

Well, I had better get going and do some things but I promise to come back and post some birthday photos next week!

Marnie

Week two of the holidays...

I can't believe how busy we have been lately! Things should start to settle down now but I am left in a HUGE mess and this house looks like a disaster zone.

Last weekend was Wendy and Matt's wedding. We had a wonderful day - the weather turned out nice for us and Wendy looked absolutely gorgeous! the venue was beautiful (Burswood on the Swan) and the reception was great fun - I think everyone there had a fantastic night :) I know I had a great time as did the other bridesmaids ;) (and contrary to popular belief we weren't THAT drunk - just cheery and as anyone who knows me and Wendy would know, a little bit silly :D) The kids spent the night at my parents in law's house and seemed to have a good time, the babies came with us.

This last week has been a bit of a blur but I know we spent a fair bit of time with Darrin and Claire who were over from England for the wedding and a quick visit. It was great to see them again (It had been three years since I last saw my brother!) and really nice to see the kids getting to know them and spend some time with them - it's a little bit sad that they are gone again now :(

We all went to the zoo on Wed (Mum, Dad, Kim, Haydn, Emily, Taylah, Darrin, Claire, Me, Lachie, Cody, Niamh, Max and Blake) and we got rained on all day long! It was a bit soggy but the kids didn't care - it just adds to the adventure for them. Lots of the animals seemed to be hiding from the rain (or maybe they were just hiding from our noisy bunch, LOL!) but we all left the zoo at 5pm having had a big day and enjoying ourselves.

Last night Lachlan had his first tee ball training session and he is so excited! Last year he played pee wees but this year he is in juniors and I believe they actually play fixtured games this season (should be interesting, LOL!) Cody is playing pee wees this year too so looks like my Saturday mornings are going to be devoted to the local tee ball oval for the summer months! (fun with three babies in tow, huh?) Dan is going to have to start working Saturdays again so I am on my own :( They have both picked up their uniforms now and they are breaking their necks to get to wear them, they keep trying to sneak out the back yard with them on, ha ha ha!

Max and Blake have been going really well. They are getting so big (must get them weighed again soon!) and to me, they look like regular three month olds now. I can't believe we have come so far in such a short time. For the most part they eat, sleep, wake for a short while then repeat the process all day long. They are realy starting to interact with us a lot more and if we try we can even get giggles out of them now (so cute!)

I am really finding 5 kids a struggle a lot of the time and as a result have been a bit of a grump lately - I really desperately need to get some organisation in this house as I know that will help us out a lot. Dan is about to start 12 hour days again and pick up Saturdays so I will be alone a lot more than I even am now, therefore will need to gain a bit more control of the housework and kids behaviours in order to keep my sanity - I'll let you know how I go, LOL! (I don't hold out a whole lot of hope for the sanity - I think it was on it's way out the door a while back!)

Marnie

Yippee for school holidays!

Two full weeks of not having to get five kids organised for the morning school run!

Actually today Lachlan and Cody went to the Perth Royal Show with Mum and Dad, Darrin and Claire so my day was quite peaceful - I only had three kids to look after, LOL! The big boys have just come home now and by the sounds of it they had a fantastic day. Lachlan was sound asleep when they got in but my little chatterbox Cody was bright eyed and full of stories about their day. I love how he gets so animated when he is talking about stuff he loves, so cute!

Dan worked a long day today and didn't get in till about 8.30 tonight. He then ate dinner and went straight to bed so I have pretty much been on my own all day. It's not always a good thing to spend so much time alone as I begin to think about stuff too much.

I have been dwelling on the past a fair bit lately, I just can't seem to shake the bad feelings that the twins birth and subsequent start to life brought us :( I am trying really hard to get over it and if I don't have time to stop and think about it all I can handle it but then something will happen to make all those feelings resurface and I get very teary and emotional about it all over again (like that telethon add that keeps flashing up the tiny baby on CPAP). I re-read my blog entries tonight and I am amazed at how far these little guys have come but It still feels so raw to me (though to look at them now you would never even know) I am aware that I have been so very lucky and that we seem to have no long standing medical issues so I even feel a little guilty having 'issues' about all of this but I feel such a deep sense of loss surrounding the circumstances of their first few weeks and what should have been a joyous time.

part of me thinks that I just need to get over it and move on - so why do I keep on having these thoughts? why dwell on it when everything is fine now? who knows? maybe it's a natural part of being able to process everything that happened so that I can move on... up until now I haven't really had the time to stop and reflect so maybe that's all it is.

Anyhow, Everything is great - all the kids are healthy and although I am sometimes a little bit down because I am so tired I am also counting my blessings and trying to remember to enjoy this time while all the kids are so young as I know it will be gone in the blink of an eye. The bigger kids all adore their little brothers and love to make them smile and 'talk' to them. There is nothing nicer than to watch them all interact with the babies and to see that love between them - those are the times that I am reminded that all the sleeplessness and craziness is worth it!

Above are some gorgeous photos taken the other day by my sister, Kim.

M.

General update.

It's a quiet house here today so i thought I would take the opportunity to update my blog!

Lachlan and Cody have gone with their Nanna and Poppy to Narrogin speedway for the afternoon so we have had a nice quiet day with the three littlies. All three babies had a sleep at the same time and I did nothing (not that I had nothing to do, LOL!)

Now we have just been for a walk around the estate here and I am feeling pretty good for it! I have been on a major weight loss campaign here in an attempt to loose some post baby belly and get ready for my cousin Wendy's wedding on the 6th Oct (I am chief bridesmaid) So far I have lost 4.5kg but I would love to loose about another 5kilos. Obviously I won't make that goal before the wedding but I'll see what I can manage. I am determined to keep on exercising too. Most of the time I can't be bothered but when I do make the time for it I feel so much happier with myself.

Things around here have been good. The babies now weigh a hefty 5.5kg and are doing great. We trialled coming off the antacid medicaton this week - what a mistake that was!! We have now gone back on it and we're waiting for it to kick in and take effect so that these whinging miserable babes can be replaced with my usual placid and non-demanding babies! The poor little men have been spewing sooooo much and screaming with the pain of reflux :( Other than that they have been really well though. I have been surprised at how tough they have been since coming home from hospital actually - they had a cold a week ago and I was sure it would develop into some sort of infection for them but both came through the other side of it fairly quickly with no further complications - I think we have some pretty tough little guys here.

Cody has been driving me batty. He is my most challenging child by far at the moment! I love him to pieces but sometimes I just wonder what is wrong with him - he is like a little ball of energy most of the time and he can't control himself, he just has far too much fun tormenting his siblings and making them yell! I think a lot of it might be to do with boredom so I am hoping that once he gets to kindy next year he might become a little more manageable. I am actually thinking af attending a triple P program to see if I can brush up on any strategies to help deal with him a little better. I am so sick of screaming at the kids all the time and I know that there are better (more effective) ways of dealing with them. *sigh* why can't they stay little babies forever - at least then they don't develop attitudes and talk back LOL!

Lachlan is doing school swimming lessons at the moment. He seems to be really enjoying it! He asked me to come down to the pools and watch but it is so hard to get out and do things like that. I did manage to have the four littlies looked after by Kim the other day so I could go and watch and he was so pleased that I was there - i feel guilty for not being able to give him the time that some of his friends mum's can give their kids :( I might have to see if I can manage it again this week at least once, even if I have to take all the kids with me and make them sit in the pram (although I can just see how well it will go down to take Cody and Niamh to the pool and not let them swim!!)

Oh well, I'd better get going and figure out what's for tea in this house - I promise to try and update a little more often!

M.

Things here have been pretty hectic - but nothing out of the ordinary :)

The twins are growing so fast now, I can't believe how small they once were. They are now 12 (nearly 13) weeks old and I'm not too sure how much they weigh. I am getting them weighed on Mon so I will know then but I am guessing over 4 kilo each now? The last few days they have been quite unsettled and chucky so I am hoping that it's just a stage they are going through

We had our friends over today and it was crazy but fun :) between the five of us we had 11 kids here (and that was with all the older siblings at school, LOL!) They all had a great day and my little ones enjoyed catching up with some other kids and having a play - sometimes I think they are going a little stir-crazy when I try to stay at home all the time (the effort required to load everyone up in the car and go out often outweighs the benefit of actually going!)

I am drowning in washing and struggling to get out of my PJ's most days but in general I am loving being the mum to five kids! I love the craziness and the noise, I love the playing and the fun, I love the fighting to a much lesser degree - but hey! You can't have everything :) I am finding that there are a lot of people out there prepared to pass judgement and make rude comments about our choice to have 5 kids but I am greatful for the few people I hear make comments like "double the joy" or congratulate me on my beautiful kids. I try to ignore those who make rude unnecessary comments - I tend to think they must be a little jealous! At least I will never be lonely or bored LOL! My friend had a great comeback today that I must remember - next time someone says "geez, you have too many kids" (like the rude lady in Target the other day) I should say back very loudly -" I guess one is too many for some people!" (with a tone that infers - I MEAN YOU!) I know I will never regret having any of my kids but if I hadn't gone ahead and had that fourth (and fifth) one I may very well have had regrets! Life is crazy, I am tired but I am HAPPY :)

Still here!

Gosh! where is the time disappearing to? The boys are now 10 weeks old and going great guns :) I had them weighed the other day and they were 3.6 and 3.8 kilos ( Blake being slightly bigger now) They are really filling out and losing that newborn baby look by the day :( I am sad that they are changing as I want to remember every moment of how they are now, all precious and snuggly and small - but at the same time I am so proud of them and how they have come along! They have already shown us what strong little men they are and I have a feeling that nothing is going to stop them now!

The other kids are all going really well too at the moment. We have finally gotten rid of all the flu and cold bugs in this house now (they were all seriously sick for about 8 full weeks - it was wearing very thin!) Lachlan is acting so grown up these days too. He is proud of his big brother status and spends a lot of time trying to show me how grown up he can be - it's really cute to see! He is so gentle with the babies too and loves to give them cuddles and kisses. Cody is a little more full on (that's just his personality) but he is so funny! He says the cutest things and I love to see how his mind works. He comes out with quirky little facts all the time - like tonight we were just sitting there and he says " Owls have big wide eyes so they can see in the dark and they wake up at night time and sleep in the day time" I have no idea where he learned that from but that's so typical of him - I think he is a pretty clever little guy and he'll do really well at school next year. Niamh is my little miss with attitude at the moment - she's just lucky she's so darned cute! She's a bit of a bossy boots and she knows her mind but she has such personality too! Mum and Dad say she is a lot like me as a child - god help her, LOL!

At the moment our day to day life consists of feeding babies and changing their bums 24/7. I am still waiting to see a smile from the bubs but Kim says she got one yesterday from Max and Dana was here and saw the end of it! The sad thing is that I would love to catch a smile but I am never sitting down talking or playing with them. I am always so busy trying to hurry up so I can do the next thing on my list that I don't get the chance to enjoy them. I really must try to remember to take the time to enjoy them both as they are because I know how fast it will all change.

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.

Too good to be true.

Just a quick update.

The transfer to Murdoch didn't happen today :( Max is still having quite frequent desats (and Blake has had a few again today too) and although there seems to be no infection in either of them they still can't be transferred back while they are so unstable.

I am really feeling a bit flat about it :( I know it makes sense but i just wish that we weren't told that the transfer would happen, only to have it taken away from us again!

M.

One month old today!

and what a crazy first month of life it's been!

They are really pushing the boys ahead now, on one hand I am glad but at the same time I am worried that it will all be too much for them. When I arrived today I saw that they have now placed them both in a wire cot together! I was very glad to see them in there with each other - it was like they were finally where they belonged! The reason I am a little worried is that all along we have been told "we have to take it very slow" and "we can't rush them or they won't cope" and then all of a sudden everything is changing (particularly for Max) and they are rapidly placed on full feeds, out of isolettes and then almost immediately out of perspex cots and into open wire cots, being pushed to suck feed at every feed now (despite the charts saying "offer 2 suck feeds a day") etc..

We had been given the best news yet this afternoon - that all being well today they would be transferred back to SJOG Murdoch toorrow morning! It really is a step closer to home and it means that the Drs at PMH feel that they are stable and going really well now and that all they need is to learn to feed. Then from about lunch time on it all started going a little pear shaped! Max started having regular desats (like every few minutes!) and required stimulation to bring the oxygen levels back up a few times. Then later in the afternoon Blake decided to join in the fun and he had two fairly long ones that actually saw him going a bit blue in colour. I can't help but wonder if they are just not coping all that well with all the changes that have been forced on them in the last two days! Believe me, I want them to progress more than anyone else does but I really don't want them to be pushed too hard and to take a step backwards! The Dr came to look at them and ordered blood cultures and CRP (to test for the presence of infection). I have since rung to check on them and although Blake has settled down, Max is still having desats. The blood resuts are now back and they are all normal - so who knows what is going on?

Anyhow, some other good news we received was that an eye screen that they had done shows no problems at this point (bubs born prem have a much greater risk of eye problems) They will need a follow up screen done in 2 weeks at the clinic at PMH but it all looks good for now. A Dr also came and spoke to me and again assured me that there was nothing to be concerned about in the head scans any more and that they are not worried by them at all.

So now I am off to bed to wonder what tomorrow will bring. I am hoping that the transfer can still go ahead but at the same time I do not want them shifted to SJOG if they have unresolved health issues or are in any way unstable :( I guess I will toss and turn all night and then call early to see what is happening.

one step closer again!

Hooray for little Max!! He has now graduated into an open cot like his brother :)

They shifted him into a perspex cot at about 4pm and when we left there tonight he had been holding his temp quite well. They are now also grading him up to 3 hourly feeds so hopefully (all going well) tomorrow night they will both be on full feeds every three hours. If Max continues going well with is temperatures we might be able to give him a bath in the next day or so too.

Something else I am really happy about is that once both boys show stability in the small perspex cots they will put them in together in a larger cot side by side!! I can't wait for them to be reunited but I think at this point it is probably more for my own benefit than theirs because they seem to have gotten quite used to being alone :( It makes me sad to think that they don't even know each other now because they have been forced to spend the first month of their lives apart - it should never have been like that and I sort of feel like something special has been taken off of them now, like that bond has already been broken a little! Maybe I'm just being silly but it makes me cry to think about it!

Blake had another breastfeed attempt tonight and he fed like a champ for about 10 mins. When he was finished he had a little chuck and overflowed a little bit so I am pretty confident that he got a full feed from me for the first time. Now he just needs to get a little stronger and be able to make more and more feeds suck feeds. Hopefully in the next few days Max will be allowed to attempt his first suck feed too!

We have been told that soon we will be able to transfer them back to Murdoch if we want to. We are just trying to figure out if we actually want to do that because there are some pretty significant costs associated with having the babies there (even after what HBF will pay out). I will make some phone calls tomorrow and see what I can figure out.

So all in all - GOOD NEWS!

M.

More progress to report today :)

I spent most of yesterday at the hospital and got the chance to breastfeed Blake twice (they are only offering two suck feeds a day as it takes it out of him to have to work for his food). Both times we attempted he was better than the day before and the evening attempt resulted in him being attched and feeding properly for a good few minutes. I think that with a bit of practice he will catch on really well, it's just a matter of time so that he can build up his strength and be alert and able to suck all his feeds rather than being tube fed.

Max is still going well too and at last report he was on his way to 2 hourly feeds (should be there by this afternoons visit!)

The biggest and best news that we got yesterday was that they both had their 28 day head ultrasounds and the doctor came in to tell me that both boys scans looked a bit better than the last ones they had done and that they are very hopeful that those white patches will just disappear all together! It is such a relief to hear even that much - I am finding it much easier to be positive about it now. No babies come with guarantees of health but at least I now feel like my boys have as much chance as everyone else :)

Finally I need to share my warm fuzzy feelings with you :P After I finished the feed with Blake last night I got to sit and cuddle him for ages and this time I was able to actually slouch back in the chair and put him on my chest in a little suggled up ball! I put the blanket over him and we just sat there cuddling for the longest time - I finally felt like this was the way it was meant to be!! Words can't even describe how nice it felt to be allowed to have that experience with him! Now I just can't wait for his brother to join us.

M.

a first bath for Blake!

Yep - today we got to give Blake his first ever bath!! He has been out of the isolette for long enough now and seems to be holding his temerature quite well so today we were allowed to bath him :) It was so nice to be able to do something normal with him and we caught it on Video and the digital camera. He actually quite liked the water and was happy to lie there for quite a while. It was also lovely to be able to take all the monitors off him (even if it was just for a little while) and hold him relatively wire free (only the NG tube)

After I had dressed him (the nurses insisted he wear the matching outfit to his brother - they did look very cute though!) He was due for another feed so I put him to the breast at the same time as his milk feed was put through his NG tube to try and teach him to associate boobies with a full belly! He was very tired by this stage (the bath had exhausted him, it doesn't take much when they are so little) but he had a few real attempts at sucking before giving up and falling asleep. We will try again tomorrow but it's all baby steps in the right direction.

Both boys had lost a little bit of weight again today so it was decided that they would add calories to my expressed breast milk to boost it up a little. They are not incredibly concerned about the weight loss but both boys graphs showed a downward trend for the last week or so, so I guess it is important not to let them loose too much weight.

Max is still just a day or so behind (probably due to the fact that he was the one that got the infections and was sick for a week!) He is still the larger of the twins at the moment but not by a while lot. They have left him on 14.5ml continuous milk feeds at the moment.

We took some more side by side shots today. They looked so gorgeous snuggled up together on my knee!

And finally - I just wanted to share. My mum sent me this verse that she found today and I thought it was just beautiful! Thankyou mum!!

A PERFECT CHOICE

Finally, God passes a name to an angel and smiles, 'Give her a premature child.'
The angel is curious. 'Why this one, God? She's so happy'
'Exactly,' smiles God. 'Could I give a premature child to a mother who does not know laughter? That would be cruel.'
'But has she patience?' asks the angel.
'I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that feeling of independence that is so rare and so necessary in a mother.'
'But Lord, I don't think she even believes in you.'
God smiles. 'No matter, I can fix that. This one is perfect. She has just enough selfishness.'
The angel gasps, 'Selfishness? Is that a virtue?'
God nods. If she can't separate herself from the child occasionally, she'll never survive.
Yes, there is a woman whom I will bless with a child in a less perfect way. She doesn't realise it yet, but she will be envied. She will never consider a 'step' ordinary. When her child says 'Mama' for the first time, she will be present at a miracle and know it!
She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.'
'And what about her patron saint?' asks the angel, his pen poised in mid-air.
God smiles. 'A mirror will suffice.'

Author Unknown

Woo Hoo!!

I have some great news to report today :) Blake has been promoted from the isolette to a perspex cot - YIPPEE!! It is so great to see him out of that box and in a real baby bed. He is managing to maintain his temperature and is wearing a little five 0 romper that I took in from home. He needs to wear a hat all the time and is well wrapped and rugged up but he is doing great. The second piece of good news for Blake was that I have been told we can start to introduce him to breastfeeding. Today I put him to the boob for a few minutes when he was due for a tube feed but he didn't really know what to do. The idea is to introduce it slowly to him and see if I can get him interested at all so we will try again tomorrow - it is just exciting that he is at that point (finally!)

Max is now on full feeds (14ml) continuous and I think he will stay there for about 24 hours before they start to grade him up to two hourly feeds. They have also begun to wean him off the isolette by lowering the temperature in there by half a degree every hour. Hopefully he won't be too far behind his "little" brother

I feel so pleased by their progress tonight. I am sooooo anxious to get them home now! I am sick of that hospital and more than ready to be their mummy now.

On a negative note - Lachlan is really not well :( He has spent the last few hours with is head in a bucket (not actually being sick but choking when he coughs - yucko!) he is really warm and miserable as anything :( He really doesn't do "sick" very well, poor little guy. I just really hope he feels better tomorrow!

still sinking in....

As I sat there at the hospital tonight looking at my new baby boys and they lie there staring back at me through the perspex I ran through the last 4 weeks in my head and I still can't believe how it has all unfolded. I feel saddened that we have had to experience their entry to the world in such a traumatic way, but at the same time I still can't quite get my head around just how damned lucky we are that we are now preparing to bring two babies home instead of preparing to bury one or even both of my babies. It's a morbid thought and one that I haven't dwelled on too much but on reflection I can't help thinking about just how close we may have come to that terrible outcome. I know for sure that when the heart trace was being done that afternoon of the 28th May, Max's heart rate was around 80bpm and dropping below that. I probably shouldn't have but I did a search on the net for "fetal heart rate 80" and found the following :

"Fetal Bradycardia
Fetal bradycardia is defined as a baseline heart rate less than 120 bpm. Bradycardia in the range of 100 to 120 bpm with normal variability is not associated with fetal acidosis. Bradycardia of this degree is common in post-date gestations and in fetuses with occiput posterior or transverse presentations.16 Bradycardia less than 100 bpm occurs in fetuses with congenital heart abnormalities or myocardial conduction defects, such as those occurring in conjunction with maternal collagen vascular disease.16 Moderate bradycardia of 80 to 100 bpm is a nonreassuring pattern. Severe prolonged bradycardia of less than 80 bpm that lasts for three minutes or longer is an ominous finding indicating severe hypoxia and is often a terminal event.4,11,16 Causes of prolonged severe bradycardia are listed in Table 6. If the cause cannot be identified and corrected, immediate delivery is recommended."

Those last three sentences really prove to me what I suspected was the case but was still having trouble believing - we were BLOODY LUCKY!

Anyhow - enough of the heavy stuff and an update on the little men....

Blake has lost a little bit more weight but still not a major concern. Today he weighs 1960g, a loss of 62g since yesterday. He is now on feeds every 2 hours of 28ml. It's so good to see him at this stage, it seems we have waited a long time to get here!

Max gained 48g from yesterday so now weighs 2206g. The best news for him tonight is that his drip tissued again so they turned it off and then decided that he didn't need it any more and they removed it! YAY FOR MAX!! No more nasty TPN drip!! It's so nice to see the needles being removed from them and each week less medicines and intervention - they almost look like normal little bubbies lying there now. The only things they have are the NG tubes in their noses and the probes on their feet for the oxygen saturation levels. Blake still had the wires on his chest and tummy tonight (respiration and heart rate monitors) but Max didn't have those (not too sure why, but hopefully it won't be long and they will be gone too!) Max is now up to 10ml per hour continuous feeds. He needs to make it to 14ml per hour to be a full feed amount so he is getting there!

The funniest thing is how happy I am that they are both pooing! We had been waiting for Max to start pooing on his own (without the help of the suppositories) and tonight while I was holding him I noticed that he was a bit stinky! When I put him back in the isolette I changed his nappy and as I wiped him he did a massive poo everywhere! It was so funny because I wasn't expecting it at all and I have no idea how someone so small can poo so much!! It really is great news though because it tells us that he is finally digesting the feeds properly. We also found out when we read the charts that earlier today Blake's whole incubator had to be changed for a clean one because he did exactly the same thing at a nappy change except he managed to spraypaint the perspex box, LOL! Typical boys already!! Gross!

I took some more really cute photos tonight too! I will try to upload them tomorrow when I get a chance. I have no idea what we are up to this weekend. Lachlan has come crashing down with some sort of bug this afternoon and has a raging fever and aches and pains. He also has a cough and stinging glassy lookig eyes - great! I just hope it is short lived and none of the other kids get it. I also really hope Dan and I don't catch it because that would mean no visits to the babies till we are over it again (they are far too little and vulnerable at the moment and we can't risk getting any more infections!) Oh well, hopefully it won't come to that and Lachie will wake up tomorrow feeling better (fingers crossed.)

M.

more good news :)

Today the bubs are still on the right track :) Every time I go up to the hospital I find myself walking into that room and holding my breath until I am told that they are still doing the right things! I feel like I am waiting for the bad news again but I have everything crossed that we are past that stage now.

Blake is now being slowly switched to two hourly feeds. They have stopped the continuous infusion and instead feed him through the NG tube on the hour, but different amounts each hour. The idea is that one hour he might get a little less than half and the next a little more and gradually the amounts will change so that in the end he is receiving the full feed every 2 hours and nothing on the odd hour. Once he has achieved that and is tolerating it he will switch in the same way from two hourly to three hourly feeds. Once on three hourly feeds he will be where it is considered "normal" and we will be able to think about breastfeeding and teaching him how to suck feed.

Blake is also slowly being adapted to room temperature so that they can be sure he is capable of maintaining his own body temp and he can come out of the humidicrib - YIPPEE!! I can't wait to get him out of that horrible box he has had to live in for almost 4 weeks now. I am pretty sure that once he goes into a perspex cot I am allowed to pick him up and give him lots more cuddles too - I am really looking forward to that :)

Little Max is still lagging behind a little with his feeds but they are pushing on. He is now on 8ml per hour continuous and seems to be tolerating it ok. His tummy is not too distended and looks ok, but he is still not having dirty nappies on his own so he really needs to start doing that so we can be sure his digestive system is working. Until he reaches full feed amounts he still has the drip for the TPN but I am hopeful that he will reach that point in the next few days. I can't wait to see that nasty needle out of his arms and legs - his little hands and feet are literally black from bruising so it must be painful. He is still having the eye drops for that eye infection but that seems to be all clearing up now and I am hoping that the only reason he is a little slower is because he did get sick and had to fight off infections and now that is all cleared up he will catch up too.

I am finding myself getting increasingly frustrated this week. I can see good progress in the bubs but it is making me anxious to get them home! While they were sick it was really scary and I was petrified of what was going to happen next, but I also knew that I couldn't take care of them and that they were in the best possible place. Now that they are seemingly healthy I just keep thinking "I want them home! I am sick of the freeway, sick of that hospital and sick of our lives being turned upside down!". The kids at home have had enough too and I just want some form of "normal" to return to our house (whatever that new "normal" might be! I just want to start learning how to deal with everything and to get on with it!!!) I have never been very good at waiting for anything so this is really testing me, LOL!

aaaah well, I'd better go to bed so I can get up and face it all again tomorrow!

looking good!

Blake is going really well and now on full feed amounts (though still on continuous). He will stay at 14 mls for a few days and then we will start the process of switching him to two hourly feeds. Today was the second day in a row that he lost weight but no one has said anything to me about it so I guess it's no real issue. He is now pooing and weeing like he should so YIPPEE!!

Max is still not really digesting all that well but they are pushing him a little now. They have decided to stop aspirating and just keep a close eye on him. He is on 4ml per hour continuous and going up to 5ml during the night tonight. They have been giving him suppositories to make sure that he doesn't get bloated from being "backed up" and they are just watching his tummy to make sure it doesn't get distended. Fingers crossed for him! We are hoping he can catch up to his brother over the next few days.

This photo was taken tonight. It is only the third time we have had them out together and the first photo we have of all four of us together :)

Happy 3 weeks old boys!!

These photos were taken tonight Mon 18th June. The first shot is Max and the second Blake.

Another day on the right track! Both boys seem to be doing well (although Blake is charging ahead with his feed tolerance issues at the moment and leaving his brother behind a bit!)

Blake is now on 12ml/hr continuous milk feeds which is almost a full feed (should be 13 and a bit!) so today they decided to leave his TPN drip off! YIPPEE!! No more nasty horrible drip hanging out of his poor little bruised hands and feet :) It's such a small thing but a huge achievement for him (and us!) The Dr explained that now they need to get him to a full feed amount and leave him there for about 48 hours and then once that is stable they will start to slowly switch him to feeds every 2 hours rather than continuous and see if his tummy can tolerate that. Once we are at that point we are looking at real progress!!

Blake's weight today was 2072g so down 12g from yesterday but I don't think that's an issue really.

Max is still not doing so well with his feeds. They have upped it to 3ml per hour continuous even though they are still getting large aspirates back. The idea is that they keep pushing on a little bit in the hopes that he will just kick into action eventually and start digesting it. He needs to have some in his belly in order to learn to digest it but not so much as it causes him a problem.

Max's weight today was 2042g, up 42g since yesterday. He still has his TPN drip, that will stay until he gets up around the full feed amount too.

Both boys had their hearing tests today which they passed without an issue. They also had the head ultrasounds and according to the Dr, the bright patches are still present on both scans in the white matter of the brain but weather that has a consequence we are yet to see! They will repeat scans periodically and keep an eye on it but at the moment it is pretty inconclusive and there are no real answers about what (if anything) that might mean for the future. We have been reassured that there is still every chance that it might just dissappear still - fingers crossed!

Cautiously optimistic

I am so dead tired and it's 11.30pm so just a quick update from me!

Tonight we are feeling hopeful that the boys are on the right track now. We have just got back from the hospital where we found that Blake is now taking 8ml per hour continuous milk feeds through his NG tube and Max is still on 2ml per hour continuous (but at least they haven't stopped him again!) Max seems to be progressing a little slower and they are still getting aspirates back, but not huge ones and they have decided to put the partly digested milk back in through the tube after the aspirates (sounds gross huh!) because as one of the Drs said, if we are not feeding him he will never learn to digest it!

Today Blake weighs 2084g (up 52g since yesterday) and Max weighs 2000g (up 58g from yesterday) I am really happy with these weights as it is the heaviest they have been and you can actually see their little cheeks getting chubbier :) Both boys have a head circumference of 30cm now too!

We took the big boys up to the hospital today to see Max and Blake before we went off to the movies (Shrek the third - a good movie for those who might be interested! The kids loved it!!) Lachlan was so gorgeous to watch while he interacted with his baby brothers :) He can't wait to be allowed to have a cuddle but right now they are too vulnerable for that - hopefully it won't be long though. For now he just reaches through the ports in the incubators and strokes their legs and arms. He talks so gently to them and it's really sweet to watch. Unfortunately my camera batteries were dead but we got some really good video footage of them. Cody loved to have a chat with them too (hey, when doesn't Cody love a chat ;) LOL!) and he was dragging the foot stools up to the incubators so he could get a good look in.

I will try to add some more photos tomorrow night after I get some new batteries!

Just eat already!!!

Max started the day on half ml per hour feeds and had worked his way up to one ml again by this afternoon when we went in for a visit. While we were there they took another large aspirate from him (9ml) so again they decided to stop his feeds for a while and they will start again some time tonight. I guess we will see tomorrow how they are going!

Blake is still on 2ml per hour continuous feeds and seems to be digesting it at this point. Yesterday he actually gained a fair bit of weight too. He now weight 2024g so he is up 112g since yesterday. He has cracked the 2kg mark and he is now heavier than his birth weight. Max weighs 1894g, up 8g since yesterday and he is also just over his birth weight now.

Max had a swab done on his eye and the results came back that the bug in it was actually one that can cause eye problems. An eye Dr was called to look at him and thankfully they don't think it has caused any problems for him. It was caught early and the IV antibiotics he was already on for the infection from the IV was also one that would cover the eye bug! They have changed him from the Chlorsig cream to some more effective eye drops though - poor little man :(

Blakes foot looks a little less sore today and his heart rate seems to have settled down. It looks like he may not be getting an infection after all so that is some good news. It still looks pretty nasty though! They had a little dressing on the burn today and a splint to stop him from bending his ankle too much where the burn is.

They had tried to do the long lines on both boys again today and were not successful with either of them so I think they have decided to abandon that idea for now. They are going to stick with the peripheral drips but I noticed today that they now have one in Blakes forearm rather than the back of his hand - I guess the veins on the back of his hands have really had enough now and they just don't work any more.

Finally - the head ultrasounds that we were waiting on today have not been done yet. They forms have been written up for them and they have been requested but they just never got around to it today, so now we have to wait till next week :( It's not like the ultrasounds will change the outcome but It is still horrible to know that we have to wait even longer now before we get any sort of answers!

well, I am too tired tonight to type any more so I am off to bed. My kids have all been feral tonight and I think they are really feeling the effects of the confusion at home. Tonight they just seemed to tag team each other on the crying and tantrum front but I have to try to let it stress me. I know they are just trying to figure it all out too. We will get there in the end!

M.

i'm feeling really peeved off and angry tonight and I really don't know why! I think I am just going through a stage of feeling sorry for myself and feeling quite ripped off with the whole situation and our experience of welcoming these two little men into our lives. Mostly I feel angry for what they have to endure. It's not fair that these two gorgeous little guys have to put up with the constant poking and prodding. The blood tests and the monitoring. staring at the world through the walls of those horrible plastic boxes and not getting the comfort of cuddles from their mummy and daddy. They don't deserve to have all those bruises on their hands and feet and Blake shouldn't have that horrible painful looking burn on his ankle that will most likely scar and leave a reminder of this sh**ty time :(

OK, enough of that and onto the factual stuff...

The boys were on 1ml hourly continuous feeds when I last posted. At about 9pm last night they aspirated Max and got 15ml back out! That is a huge amount considering the tiny amounts that were going in so they stopped his feeds overnight and recommenced this morning at the puny amount of half a ml per hour continuous!!! I am sure we can't get any lower now!!

Blake had a few desats today (Oxygen levels dropping) and his heart rate was a little low and doing funny things (Bradys) so the drs were still suspecting that he might be brewing an infection. They ordered blood tests to check for infection and they decided to start him on antibiotics too, just as a precaution at the moment. They were commenting that the burn on his foot looks red and swollen and quite sore so they are concerned that he is really prone to infection at that site. The bloods should be back tomorrow but in the mean time he is on antibiotics anyway just in case.

Both boys were supposed to still be getting long lines put in tonight but I am not too sure if they have succeeded with those yet? Dan has gone up to the hospital again tonight so when he gets home I will know if they have managed to get that done. At least if they get those in I will know that they won't need to have the drips changed from hand to foot every few days - I think their little veins there have had enough and they are running out of hands and feet!

I am pretty sure that Blake is still on the 1ml per hour continuous feeds and tolerating that for the time being.

When the Drs were doing their rounds today they stopped to speak to me about their progress. The paed said that it is frustratingly slow but not outside the realms of normal just yet. If they continue to not tolerate their feeds for too much longer they might look into further testing to make sure that they don't have any further gut or bowel problems but at the moment they are still just considering that they have immature systems that are just slow to kick into gear and get working. I was reminded again that they are just not meant to be born yet and that we just need to wait for them to catch up. The head ultrasounds are going to be done tomorrow. I am sure I won't sleep all that well tonight :(

update 13/6/07

Today things are looking pretty good. Max and Blake have both been placed on continuous feeds (at the rate of one ml every hour) and seem to be tolerating that tiny amount at the moment. I think tomorrow it will go up to two ml every hour. Max is going ok on the antibiotics and seems to be much better in himself (although he does seem very "yellow" to me tonight, I won't be surprised if he is back under lights again soon!) Max also has a gunky eye but is being given Chlorsig cream and it seems to be sorting itself out.

Poor little Blake has had a bit of a mishap overnight with the IV in his foot :( The fluid they put in through this drip is called TPN and it is quite nasty stuff. It has all the fluids and calories that they need but it must be quite acidic. The point where the needle is put into their little arms and feet often gets red and sore and they need to remove them and put them back in a different position every few days. Last night Blakes vein in his foot where the drip was inserted packed it in and the TPN fluid seeped out into the surrounding tissues in his foot. Some also leaked onto his skin and today he has a very swollen and red little foot and ankle and also a little burn about half a cm in diameter on the top of his foot. It looks really nasty and the skin there is all dead (it will come off like a scab eventually and will probably scar.) The nurses actually told us that it is not such a bad one and that often bubs need to have plastic surgery and a little skin graft when they happen :O OMG!!! I am really nervous that it is going to happen again to the poor little buggers!!

To try and fix this problem (because the boys seem to be needing the drips a lot longer than the Drs thought they woud be needing them) they are going to try and put PIC lines or long lines into both of them. These are catheters (tubes) that are inserted into a vein in the arm or leg and fed right up and into a main vein in the chest. They did try to do one in Blake tonight but the Dr was unsuccessfull and gave up for the day. He is going to try again tomorrow and also try to get Max's done too.

ok - now I am ready to update my post from Monday and fill you in on what has been happening with those tests I was talking about. I don't want to be dramatic and I want to stress that at this point we still know nothing and don't want to jump to any conclusions... OK, here is what I originally typed on monday :

"Now for both of them - Today the doctor came up to me and asked if he could give me an update on the twins. After explaining the other feeding issues and Max's illness he then went on to explain to me that the boys had routine head utrasounds on day one and day seven. The scans from day one showed a small white patch in the cerebral cortex for Blake and fairly normal for Max, but by the day 7 scan both boys were showing these white patches on the scans. I was told that this is called cerebral odema and it may or may not mean anything of consequence. Basically they will repeat the scan in another week and then we will have some sort of idea about what we might be dealing with. It is possible that this will just disappear all together, or it may be that it indicates some damage to the nerve fibres in that part of the brain. The consequences of that scenario are still pretty unclear to me, except that I know that is the part of the brain that deals with motor skills (movement) and the dr hinted at the chance of something like a weakness down one side of the body etc.. I really don't want to speculate about this right now and I can't even really talk about how I feel for fear that I might fall apart.... it is easier just to try not to think about it at this point, especially seeing as we won't really get any answers until after the next scan anyway :("

Emotionally today has been a real mix. On the one hand I keep feeling sorry for myself - like when I am reminiscing about the births of my older three kids and remembering those first few weeks (or hours even) when we got all the photos and cuddles I wanted and I have those memories of those first newborn days, then I think about the twins and their entry to the world. I didn't hold them at all for three days and the only photos I have from the first moments are in the isolettes with the oxy-domes over their heads and their little chests looking all collapsed in as they struggled to breath. They weren't being held by me or their daddy and they have barely been held since. I feel like I have had the first few months effectively taken off of me and I can never regain that time.

On the other hand I know how greatful I need to be that I even have two babies that I will eventually get to take home and cuddle. It came so very close to being a tragedy for one or even both of my boys and I have to be greatful for the way it has turned out.

let's try again!

OK, here we go again. Both boys have been re-started on their tube feeds at a rate of 2ml each every two hours for twelve hours and then they might slowly start increasing them again (by about a ml every 12 hours!) I think the aim is to get them both to about 20ml every two hours so we still have a long road ahead of us. I am almost too scared to say that we are going well and heading in the right direction but for now that seems the case!

I am feeling a little brighter today about the previous test results that I mentioned. Dan came up to the hospital with me this morning and we asked the doctor in duty to explain it all to us again. After hearing it the second time it didn't seem quite so scary and I am trying to just focus on getting the boys moving in the right direction with regards to their feeds and getting out of those isolettes before I worry about what may or may not happen in the future! For now it all looks good so that is all I can worry about today :)

The photos at the top of this post are

1) Max in his isolette. You can tell that he really wasn't feeling the best, poor little man :(

2) Grandma with her first ever cuddle of one of the twins (this was Blake) on the 11th June (the day Max was really sick!)

Stop the ride.... I wanna get off :(

*sigh* It is 11pm and we have just got home from the hospital again. Today has brought a whole new set of issues and a whole lot more questions without answers.

I'll start with Max - this is the good news! He seems to have perked up a lot and is on the mend. The antibiotics seem to be doing the trick and his colour has returned to normal. He is squirming and fidgeting like normal and although still very sleepy seems to be breathing like normal. They found a bug in the blood cultures that would be responsible for this infection and apparently it is a very common bug that lives on the skin and would have gotten in through the IV in his leg or arm. He will need to remain on the antibiotics for about 7 days and is currently not being tube fed at all because sick little bubs don't digest their food all that well and to leave it sitting in his belly might cause other gut problems. I am hoping that tomorrow they will recommence his feeds (though at what quantity I don't know??)

Now for Blake - He has had a few episodes of vomiting after his feeds (not a lot, but enough to make them watch him more closely) they aspirated before a feed this afternoon and got 9ml back out of his tummy. It looked like pretty much undigested breastmilk and so they decided that rather than putting another 19ml back in they would return the aspirate back to his tummy and then make up the rest of the 19ml with new milk. They did this and then waited till the next feed to see what would happen. At the next feed he was still holding milk in his belly so they did another tummy x-ray and found no obstruction (good news!) but still it was a mystery as to why he had stopped tolerating feeds again! Then, this evening he was very tachycardic (fast heart beat, up around 200bpm) so they have now begun to suspect that he too may be brewing some sort of infection or illness that would be affecting his heart rate and also his ability to digest his feeds. They have witheld any more feeds till the morning and are taking bloods at midnight tonight to check it all out!

Now for both of them - They had some tests done a few days after they were born and the tests have shown a "possibility" of a few complications. We are still unsure at this point what it all means and really don't want to go into it right now, other than to say it's another spanner in the works and a little more stress we could have done without! Once we know a little more I will edit this post and add the details, until then it's all speculation anyway!

Sorry this is a little bit factual tonight but I really can't go into the emotional side of it now, I feel far too drained to even go there. I know this is a temporary hiccup but it is extremely frustrating at the same time.

Marnie

Looking a little brighter....

Just a real quick one before we head back up to the hospital! Max seems a little better this morning (according to the nurse who we rang this morning!) Through the night the initial results of the lumbar puncture and urine test came back all clear (no nasties!) and he didn't have any more apneas, brady's or desats since we left him last night so that is great news. He is still lethargic but the antibiotics are being pumped into him and there's a good chance that they are already taking care of whatever the problem was! We are still wasiting for the full cultures results from the bloods and lumbar puncture but at least there seems to be nothing really terrible and no worse (so it looks like no CPAP or ventilation!!)

I will update again tonight when I get home - maybe some more photos of my cherubs again too

oh - and BTW! Blake is doing fine!! He is still increasing his feeds (I think he is almost up to full feed amounts now!) and slowly gaining weight too - Way to go little man!!

Marnie

10/6/07 More on Max!

OK, I really need to get to bed! It's after midnight but we have just got back from the hospital and I wanted to update while everything was still in my head....

Tonight when we went back up to PMH Max was much the same, if not little worse. I noticed straight away that his colour was different - he was not his usual little pink self, but looked rather pasty and washed out. He was also still extremely lethargic and floppy! I had rung the nursery earlier in the afternoon and had been told that he had had a few more desats and that his heart rate had also dipped a few times so they had started a course of antibiotics as a precautionary measure. The blood results had come back at that point at a normal level (so not really indicating an infection) but they decided to start antibiotics anyway. Tonight he was still clearly struggling with his breathing and had several bouts of apnea (where he stopped breathing for a short amount of time) while we watched. at the same time as this was happening his blood oxygen levels were dropping and his heart rate was also dropping (bradycardia). This was clearly concerning the nurses and they had to stimulate him a few times to make him respond and take another breath (not to mention how much it was concerning his mummy, who was now sitting by the cot side staring at his little chest with tears streaming down my face!!)

The nurses called the doctor to review him at this point and a lovely young female doctor came in to have a look. She watched him for a bit and then spoke with the nurses who were caring for him before she decided what would be done. A new set of bloods was ordered as she was certain that there was in infection somewhere and she explained to us that it can often take a few hours for it to show in the blood. She also said that when those results come back with a higher level it will confirm that Max has a bug of some sort and they will then complete a "sepsis screen" which includes further testing of a urine sample and also to perform a lumbar puncture on him to find out the exact type of infection and where it is in his little body. She said that it is important to identify the infection so that they can be sure that the antibiotics will be the right ones and that he will be given them for the right length of time to really take care of it.

So we waited the required time (about and hour and a half) before the blood results came back - earlier in the day the level was normal at 7 - tonight it was 37! Clearly an infection somewhere!! The next step was to organise a Lumbar puncture (which they were setting up for before we left! We decided not to hang around for that as we were told it can be quite upsetting and we really could not take much more tonight) the nurse said that it is likely he will get worse before he gets better and that there is a good chance that he will be transferred out of the nursery and back into the main NICU before the morning. She also said that if his breathing gets any worse that they will look at putting the CPAP back on him or even at the very worst case needing to ventilate him again.

So that is it, and that is where we are at. My poor baby boy looks so miserable and sick lying there struggling to breathe. I almost wish that they would put the CPAP back on so I didn't have to see him try so hard - he just looks exhausted :( I know on a logical level that this is just a temporary setback but it is still so hard to take. The boys were both doing so well and now poor little Max has to put up with this - it's just not fair on him. No little bub should have to go through what he is at the moment! It was not meant to be this way!! I should still be pregnant (I would be 33 weeks now) and those sweet little boys should be snuggled up together protected by me - not fighting off bugs that their systems are too immature to handle and lying metres away from each other in plastic boxes

OK, enough feeling sorry for myself.... I am off to bed for a restless night of attempted sleep! Thankyou so much to those people who have passed on supportive messages and offers of help - you know who you are and I love you all :)

Marnie