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

10/6/07 AAARRRRGGGGHHH!

It's not fair!!!! I am feeling really sorry for myself today but I'm especially sorry for my beautiful little men who are stuck up there at that hospital in those plastic boxes with horrible needles and tubes being stuck in them all day long :( Today has not been a good day!! Poor little Max does not look well at all! I noticed when I first got there that his breathing seemed really erratic and then after a while the alarms on his monitors kept going off and showing that his oxygen saturation levels were dropping quite frequently. I had also noted that he seemed very very quiet and lethargic compared to yesterday (yesterday he was wriggling all over the isolette and squirming a lot, today he just lies there, even when you touch him he doesn't move. He was having trouble opeining his eyes and it all just seemed like too much hard work for him today - he looked very unhappy!)

The paed. came in and was checking him over - listened to his heart and lungs and said they sounded fine, then he asked me what I though of him today? I said that I thought he was very quiet and he agreed. He then said that maybe he was brewing up an infection or something and that he would order bloods and check it out before putting him on some anti-biotics again if necessary. The blood results should be back this afternoon. In the mean time they are witholding his feeds and waiting to see how he goes.

To top it off the big kids are going feral at home :( They are really starting to fight and play up with each other and are totally ignoring Dan and I when they are asked to do anything. I know they are feeling the stress of the house but I don't know how much more I can take!! I really lost it at them this morning when I was being ignored for the 100th time (Lachlan and Cody refusing to get dressed into the clothes I had laid out for them) and Niamh was screaming at me wanting me to pick her up. I needed her to climb onto the couch because I can't pick her up yet but she was just screaming and carrying on at me and would not do as I asked!! I feel like I should have stayed in bed and cried that I was in pain for a few more weeks, at least then people might realise that things are not "back to normal". I get so defensive and frustrted when people ask about how things are going.. it's like they only really want to hear "yeah, good thanks!" and they only really want to know if the babies are ok? Well, if they were OK they would be at home with me, wouldn't they???

Sorry - I am just feeling the need to vent a little today :( I will check back later with more news on Max!

Marnie

update 8/6/07

This first photo is of Dan holding Max, the second one is Max wide awake and looking around at Mummy and Daddy and the third one is Blake fast asleep in his isolette.

We have just got home from the hospital and the boys are doing pretty well :) They have been put into the nursery up at PMH now (so out of the main room of the ICU) They still have all the same monitors on them but they have now got one nurse between four babies so obviously require a little less constant care. They seem to finally be tolerating their feeds and although it is a very slow process we are getting there. Max is now on 8ml and Blake is on 10ml and they are both increasing by 1ml every 8hrs. Today Max has gained 60g from yesterday's weight and is now 1850g and Blake has gained 55g since yesterday and now weighs 1700g.

Murdoch has been calling PMH and asking when the boys are coming back but as the nurses said to us tonight, the last thing we want is to push them to digest more food than their little bellies are ready for and cause them a problem so that they have to be transferred back again - that would be devastating! I would much rather keep progressing at a slow rate and keep it stable (although I would love for them to be back at Murdoch! Only half the distance and a lot less stressful!)

*sigh* it's just soooo hard to not be able to pick up my babes and cuddle them whenever I want :( It breaks my heart when I have to walk out of that room every night and leave my babies behind. I was so unprepared for the emotional journey that having my babies at 31 weeks would bring. I do recognize how lucky we are though and I know it could have been a thousand times worse.

6/6/07 update

Here we are still plodding along and waiting for these boys of ours to start really digesting the EBM they are getting! At the moment Max is on 4ml every 2hrs and increasing by 1ml every 12 hours and Blake is on 6ml every 2hrs increasing every 12 hours. Max was doing really well at one point and was up to 12ml but then his tummy started getting distended and they had to withold some feeds and start again! It seems so frustrating but there is nothing that we can do about it! I am fast learning that these babies are on their own schedule and nothing we do will change how long it takes. I asked the nurse today what they are working towards in order to leave the NICU and was told that they will probably be looking for them to be taking full feeds and digesting them well for about a week. I then asked what a "full feed" was and was told that it is calculated on body weight and for Max it would be about 80ml at a feed!! I was reassured that it sounds worse than it may be and that they could take off and start taking larger increases soon. It will most likely still be a few weeks though. Once they master that they can be transferred to Murdoch again and begin to work on fattening up and learning to suck feed. That in itself could take another three or four weeks :(

It is so hard not being able to take my babies home. I get so sad thinking about them lying there in the isolettes all alone under the bright lights of the NICU. They are hooked up to IV's and monitors all over their little bodies and are pricked and prodded on a regular basis so that their little arms and feet are covered in dried blood and bruises. They cry and squirm each time bloods are taken and they look so sad. I often wonder if they think about their twin and wonder where they are. Today was the first day that I think they even got to see each other! I was allowed another double cuddle and this time I held them on a pillow side by side. Blake was wide awake and kept looking over at Max. After a while they had both snuggled down to sleep and looked so sweet next to each other - they finally looked content and relaxed! Max had been very squirmy all afternoon and as soon as he was placed on the pillow in my arms and next to Blake he settled down and slept for the whole hour that we had a cuddle - It makes me think that they must be missing each other and that would add to their stress, poor little men :(

I got to change a nappy for each of them yesterday too! It was certainly different to my previous experiences of newborn nappy changes. I had to put an arm through each port of the isolette and change nappies around all the wires and tubes! Max actually did a big meconium poo while I was changing him - YIPPEE! That's my boy!! that's what we need to get that digestive system working. Never before have I been so happy about a pooey nappy, LOL!

some photos

the first photo is one Dan took of Max on the first night after they were admitted to PMH. The mask is the CPAP mask that helps to force their airways open and keep their lungs a little bit inflated so they don't have to work too hard.

The second photo is Blake being held by me on the 3.6.07 I like this shot as it gives some idea of the size of his little head!

The third shot is a shot of Max and Blake together (max on Left, Blake on right) taken on the day we got our first double cuddle (I think it was Friday 1st June, 07.

Two steps forward, one step back!

I feel like we are progressing but very very slowly! Max and Blake are now both off IV anti biotics and no longer under the phototherapy lights so that is a plus - but they are both still having a little trouble with the feeds at the moment. Yesterday Max was seeming to tolerate them well and was up to 8ml at a time but today that has changed. This morning they got quite large aspirates back out of his naso-gastric tube and then again at lunch time they got another 9ml back out (not too good when he had already dropped back to 4ml at a feed!) so they decided to withold two feeds in a row and then were starting him again this evening (on 3ml this time). Blake was already having a little trouble yesterday so they were only slowly introducing them back to him today and he is still only being given small amounts at each feed. I guess tomorrow morning we should have a clearer idea of how they are coping again and if we are heading forwards or backwards!

I can't believe how many tears I have cried this week. I am trying to be brave and feel like I am forever telling myself to pull it together and stop crying. I know in my brain that all is going to be ok and I am so very very grateful for that but I still feel so emotionally shattered. If I don't think about it too hard and no one asks me how I am going or is too kind to me I can manage to keep going and not fall apart at the seams! It is just so hard to see my babies lying there under the bright lights of the NICU and knowing that I can't do anything for them - not even give them cuddles whenever I want to :( It also plays on my mind how very close we came to a tradgedy a week ago and how lucky we are that the doctor was brave enough to take the actions that he did and deliver them (against that hospitals protocol) at that gestation. I have heard that the word aroun the hospital is "geez, that doctor's got balls!" and I know from the comments that I have heard regarding the urgency of the situation that he was fully expecting that it was a chance at least one of those babies could have stopped breathing at any moment. I also know that in theory he should have put us in an ambulance to King Edward Memorial Hospital and wiped his hands of us as that would have been the "right thing to do" but in hindsight his quick actions (although terrifying at the time!) could very well have saved my babies lives!

I have a headache and it's now midnight - I am off to bed!

Marnie.

What a week!!!

OMG!! What a week we have had! I will cut and paste from my birth story so as not to re-type it. I apologize in advance as it is rather long but I really found it useful to type it all out, like it helped me to process what had happened to me and to come to terms with it all.... so here it is....

Birth story of Max and Blake
28th May 2007
Max Kenneth – 4lb 2oz
Blake Daniel – 3lb 14 oz



Marnie : It was Monday morning and I was 31weeks and 2days pregnant with twin boys. By this stage I had had enough and was feeling really cheesed off with the whole pregnancy gig! I was huge and tired and not sleeping all that well so I had spent the night previous in and out of restless sleep and wishing that the pregnancy was over – I didn't know how close I was to getting that stupid wish!!

I headed off the the indoor playground (funstation, Rockingham) with Cody and Niamh after dropping Lachlan at school. I was meeting some friends (Teresa from EB and Shelley from EB and school) so at least I was looking forward to taking my mind off feeling sorry for myself. We met at 9.30am and the kids played together for a while. I was feeling ok and glad I had bothered to go out. Niamh was being her usual cheeky self and decided to run off up the big padded ladder to the big kids area. I called out to her to stop and of course she climbed faster, I jumped off my seat and followed her half way up the ladder where I caught her and said “no! You will fall and hurt yourself!!” I turned her around and held her in one arm facing outwards, half on my hip and half on my belly and started to walk back down the ladder. I am not sure what happened but the gravity shift with Niamh and my big belly out the front was enough to make me loose my balance and somehow my upper half went down the ladder faster than the rest of me! I stumbled and my feet hit the floor before I went down. I remember landing hard on the carpet with Niamh underneath me. My belly did come into contact with the floor but poor little Niamh kind of softende my fall too!

Apart from being incredibly embarrassed and upset that I might have hurt Niamh I was ok. After checking her all over I realised she was just frightened but ok, then I dropped my bundle and began to cry. My belly hurt a little with the fall but any pain soon subsided so I ignored it and went on with our play date. I sat there for another hour or so with my friends but I was really distracted and slightly worried that I may have done some damage to the babies. I could still feel them moving but I was slightly concerned.

Once we left the fun station I decided to call mum and tell her what had happened. She was concerned and told me to come over to her house so off we went. Once I had a chat to mum she convinced me to call the Dr (my Obstetrician) and just see what he said about it all. I don't usually like to make a fuss but I decided that I shouldn't argue so I made the call to Dr Greenland's room and spoke to the receptionist there. She went off to ask the Dr and then called me back to say that Dr. Greenland thought that I should just come up to the ward at the hospital and get checked to make sure all was ok. I was convinced that it was all a waste of time and I would be fine but I wanted the peace of mind so went on into St Mary's ward with Mum, Cody and Niamh in tow. In the driveway before we left I rang Dan at work and told him what had happened but not to worry – I was sure it was all fine and I would see him tonight!

We arrived at the ward and were taken to a room where the CTG monitors were put on my belly to trace the baby's heart rates. After about 40 mins on the machine it became obvious that twin 1 was getting stressed. His heart rate was low and kept on dipping in a cyclical manner and I could tell that the midwives were a bit concerned about it (even though they never actually voiced their concerns.) I was told that they would have to get the Dr to come over and have a look because it was a little bit worrying so at this point I am thinking – “oh-oh! , maybe I am going to have to get admitted for a while to be watched!” - how naïve am I??

Dr Greenland came over and had a look at the trace. After a few minutes of “hmmm-ing” while he looked he sat on the couch next to me, patted my leg and said “it would appear that baby is a bit pissed off!, I think you are going to have to have these babies!” He explained to me that baby 1 was stressed out and that we needed to get them out so that we could do something to help them. He also mentioned that usually at 31 weeks gestation they would put me in an ambulance to KEMH but that he didn't really want to take that risk because if something were to go wrong during the transfer they wouldn't be able to do anything about it en route!

It was at about this point that the phone rang and it was Dan wanting to check that all was ok with me and the bubs. It must have come as a huge shock to him when he asked “everything ok?” and I said “umm, I'm not sure, I'll call you back”. Overhearing the conversation, the midwife told me that Dan should come straight away. Not really knowing why, I told Dan he needed to come, so he dropped everything at work and left for the hospital. The next 20 mins or so are a bit of a blur in my head but I know I was given a consent form to sign (I wasn't even sure what I was consenting too, LOL! At that point I was still wondering if they were going to induce me, ha ha!) I was given a gown and told “change into that, you have two minutes!” I was put on a bed and they shaved me (ok, so now I realised I was having a ceaser!! Panic stations!! I didn't want a ceaser, I was afraid of that!! I was having a nice natural delivery just like my last three kids!!) There were people running everywhere getting changed into scrubs and calling things out to each other. I heard one midwife say to another in a really quiet voice “make sure there is lots of intubation equipment – we are going to need it!” OMG!! My heart was jumping out of my mouth – this was not supposed to happen this way!!

I had left my poor distraught mum standing with my two littlest in a pram and wondering what the hell to do. From what I gather she called Dad and Kim and they both came up to the hospital (Dad had collected Lachlan from school for us first!) They put the sides up on my bed and wheeled me off the theatre in a great hurry. There were people rushing everywhere and a feeling of stress and urgency in the air. As we were going into theatre the midwife pointed out the anesthatist and said “this is the man you speak to about previous epidural problems” he responded back “nope! We're not having one of those!, No time!” OK GREAT!! Now I am also getting a general!! I was really freaking out by now. The Dr commented to me afterwards that he heard my heart rate on the monitors and it was up around 190bpm!

I shuffled across onto the theatre table and lie there completely vulnerable while people stuck things on my chest, needles in my arms and a urinary catheter was inserted (all at the same time, I might add!) I was trying so hard to be brave but I was terrified! I tried to hold it all together and as I lie there with the mask over my face the last words I heard were “the husband is here now, can he come in for 2 secs?” and the answer that came “No! No time now, he'll have to wait”. I drifted off to sleep with a single tear running down my cheek.

When I awoke I was first aware of the feeling of choking. The tube was still down my throat and I was fighting against it and trying like mad to swallow. It felt like forever before it came out and I could breathe freely again, even though I think I wasn't actually fully conscious at that point I must have been aware enough to feel the tube in my throat. I slowly came around and remember lying in recovery with hot towells wrapped around my head and bright lights above me. I wanted to speak but wasn't able to get it out for ages. I kept thinking “what about my babies?” and finally I managed to croak out the words “my babies?” I was told they were doing fine and had gone off to the nursery. The next question I asked “is my husband with them?” to which I was told he was so I relaxed and decided to succumb to the pain relief drugs they were giving me.

While I was in recovery Dan was in the nursery with the babies. I will let him say what happened during that time:
Dan : Each of the bubs were attended to by a midwife who put the babies into their own isolette. They had a heart rate monitor and oxygen analyser attached to them. They're little heads and torsoes were put under the oxy domes. This time a radiographer and a portable x-ray machine were brought in and a series of chest x-rays were taken of TW1 and TW2.

Marnie : After I had recovered enough they wheeled me back to a room but we went via the nursery on the way. I saw Dan and he was looking awfully stressed – kinda like a deer caught in headlights! We saw the babies and they were in isolettes in the nursery, They looked ok to me but I really wasn't able to pay much attention. I put my hand in and stroked them on the legs but that was all I was able to do – there were no post birth cuddles for us :( Once back in the room Dad and Kim had arrived and Mum was still there with my kids. I couldn't really talk much and was a little doped out for the rest of the night.

After speaking to my three big kids for a little while in my room Mum and Dad took them home and Kim left Dan and I in the room for the night. The babies were in the nursery at Murdoch

Dan: The bubs were born at 3pm and i guess it was about 6pm when Dr Greenland came to see Marnz. He looked a little blank and apologised to Marnie, but explained that he didn't have a choice and was not prepared to leave the bubs in for a second longer than he had to. He said the peadiatrician that was in at the delivery, Dr Charlie Crompton, was assessing the bubs and there was a possiblilty that they would need to be tranfered to PMH. If they were transferred Marnie would have to stay at Murdoch. About half an hour later Dr Crompton came around and explained that TW2 was struggling to breath due to his immature lungs and he had called the WANTS (Western Australian Neonatal Transport Service) team to come and take TW2 to PMH. The WANTS team comprised of one ambulance, 2 ambos, one specialist doctor and two nurses. While they were here they would also assess TW1, who was doing marginally better, and decide if he also needed to be tranferred. By 7pm we were informed that the WANTS team had arrived and they would be quite a while assessing the bubs and preparing them for transport to PMH. Marnie's midwife for the night took me into see the bubs while the WANTS team was working on them. They didn't let me see too much but I spoke the doctor attending them and she explained that both the bubs would be tranferred that night. By 10pm we were told that they were leaving, so they wheeled Marnie's bed out into the coridor to see the bubs. Her view was very limited as the twins were in a specially designed stretcher and Marnie was very sore from the C-section. Time was critical and the bubs were taken away. After sitting with Marnz for another half hour or so I decided to head up to PMH to put both of our minds at some sort of ease. From Murdoch I headed home (20 min south) and grabbed Marnie's hospital suit case before heading up to PMH (40 min north from home). I arrived at PMH at about midmight and made my way to the Neonatal Intensive Care Unit (NICU), by now the bubs were on seperate resuss tables and both had a tubes down their throats and were on ventilators. Over the next half hour or so, another set of x-rays were taken as well as a heap of blood tests and other drips and tubes were attached/inserted. I had managed to take some photos of the bubs to take back to Marnz. One of the midwives asked if I wanted to go for a coffee as they were about to put the surfectant into TW2 and it was something I wouldn't want to see. I felt torn and wanted to get back to Marnz so I left then, which was about 12:45am.

Marnie : That whole first night was a blur to me. I don't really remember specifics. I know the WANTS team came, that the babies were assessed and taken and that at some point Dan went up to PMH to see them but I really don't remember the night at all. I think I was dozing most of the night and had the help of self administered pain relief (push the button when you want more drugs!) to stay relaxed!

On Tuesday morning Dan decided to go back into work to tie up a few loose ends and let them know what was going on. He left me at about 6.45am and headed off for a few hours. While he was gone the midwife came in and removed my catheter, PCA (the self administered drugs!), the drip and bung and then she helped me to get up and have a shower. I was very sore and stiff but glad to be out of the bed. They then asked me if I wanted to be shifted to a double bed room and that was organised. By the time Dan had been into work and then back to PMH to check on the boys I was settled into my new room and waiting on news of their progress. Both boys had been taken off the ventilators and were on the CPAP machines but were both breathing air only. They seemed to be doing quite well considering the rough start they had been given.

Wednesday I was feeling up to making a trip to PMH myself to see my babies properly for the first time. I got up and showered early and we prepared to leave. The Dr came in on his rounds again and we had a little chat and went over the same things – the fact that it was unfortunate but necessary, that we will never know if the fall was the cause of the distress or even if it was a lucky coincidence that I did fall over because a problem was brewing that we were unaware of (the Dr seems to think this is highly likely!) I shuffled off slowly downstairs and Dan fetched the car. I was trying to be really brave and hold it together but it was all very overwhelming and when we entered the NICU for the first time I was feeling very emotional. I started crying and dropped my bundle for a little bit! The nurses got me a wheelchair to sit in and once I had calmed down a little we went around to where the babies were. Seeing them for the first time was very surreal. I remember feeling like they didn't really belong to me, I didn't know them. There were these two tiny little babies lying there with tubes and drips all over them and it was not meant to be this way – they were still meant to be in my belly and this nightmare was not meant to be happening!!

We stayed for a while and I reached in and stroked their arms and legs a few times but that was all the contact I had with them that day. I felt very disconnected and extremely stressed. The rest of that afternoon was spent back at Murdoch hospital. The trip in the morning really took it out of me and I needed to rest. Dan went home for a shower and a shave and he picked Lachlan up from school. After collecting Lachie Dan came back up the hospital and Mum and Kim came in with Niamh and Cody for a visit (I hadn't seen them since Monday, and I wasn't really with it then!) The kids seemed to be coping really well staying with mum and dad and it was nice to see them but the noise levels always rise when they come to visit, as do my stress levels so they didn't stay for too long. Kim, Mum and Dan had arranged to take the kids up to the hospital to meet their little brothers for the first time so everyone left my room to go to PMH and take shifts in taking the kids in to see the bubs. That was also the day we decided to name the babies (we thought it was about time, LOL!) We decided that Twin 1 would be named Max (it was later decided he would be Max Kenneth) and that Twin 2 would be Blake Daniel.

Thursday morning Dan and I got ready and went off to PMH again to see our little boys. This was the first day that I actually got to hold them (individually) and the first time that I started to feel a real connection to them. It is so hard to feel involved when you can't touch and kiss your babies, you are not responsible for feeding them or changing them.....none of their basic care is in your hands and I had really been feeling like they weren't mine. I held Max first and Dan took lots of photos and video, then after a while we switched over and I also got to hold Blake. Once they were in my arms I realised just how small they are and how different they felt to my other babies when they were born, but I also felt like they “belonged”. They were my babies and they really felt like ours.

Thursday night was Alan and Janettes turn (MIL and FIL) to meet the babies so after the afternoon was spent resting at the hospital Alan and Janette popped in to see me before Dan took them up to PMH.

Friday I was feeling like I hadn't had a chance to even speak to my mum yet! She had stepped up and taken care of the kids pretty much constantly since Monday afternoon on her own and I am so greatful for how much she has done for us. She was bound to be feeling tired by now and I know how much she would have liked the chance to talk to me and kind of de-brief about all that had happened (I also really needed that myself! I am really close to mum and share everything with her so I really needed her too that day!) Dan arranged to take over the care of the kids for that day so Mum took Lachie to school and then Dan went to Mums house to pick up Cody and Niamh and take Cody to his swimming lessons. That left mum and dad free to come in and spend some time with me. Since they couldn't get here early Kim came and sat with me for the morning and it was nice to have her there as I was feeling really really emotional! My milk had started to come in and I was just feeling very teary and sorry for myself. I think the whole experience was finally starting to hit me and I was still trying to process the events of the past few days. Mum and Dad came up by about 10.30 and we all sat and chatted for a while in my room. After a while we started to talk about the need for a breast pump as I will be pumping and taking milk to the babies at PMH and then finally back to Murdoch when they are able to be transferred again. We researched the options for a while and decided that it was better in the long run to actually buy a new pump ($507 later!) and have it to use for as long as I like and then be able to sell it at a later date second hand. Some phone calls were made and we found the pump I was after at the chemist at Gateways so I got them to hold it for me and we finally had that issue sorted out!

By about 1.00pm Mum, Dad and I were ready to head up to PMH to see the babies (Dad hadn't seen them yet) So we parted ways with Kim and Dad fetched the car for me. This was my really low day and I was in tears for practically the whole day!! From the time we arrived at PMH to the time I went to sleep that night I don't think there was a minute that my eyes weren't leaking tears!! The babies had gone a little backwards as they were not tolerating their feeds very well and it was upsetting their tummies. The nurses said there was no point in pushing it as sometimes if they are pushed they can actually develop other problems (sometimes requiring surgeries etc..) On the plus side they were spending more time off the CPAP than on. All in all they were doing well and still progressing, it's just a very slow process and there is no timetable for it – it's all up to the babies and how they respond.

I spent a teary afternoon back in my room in the company of mum and dad (who were looking like they could do with a good cry themselves at this point!) but I know mum was really worried about me and she managed to talk me into getting Dan to change his plans for the night and come back in to be with me. The original plan was that Dan would spend some time with the kids and let them watch the big brother friday night games that they love! They like to sleep in the lounge and eat popcorn so we thought that it would be nice for them to do that with Dan since the poor little buggers had hardly seen him all week! Still... I was an emotional wreck and it was decided that I really needed him here with me so Mum and Dad arranged to sleep at our house and Dan would set the kids up and spend some time with them as planned before coming in to see me. Kim and Tom and their three kids came in to keep me company while I was waiting for Dan and it really helped to keep my mind off the misery I was feeling. When Dan came in later that night it was so nice just to know that I was not alone and that he was going to be there with me. We had a talk and a cry together and shared how we were feeling, we ate chocolate to cheer ourselves up then both fell into an exhausted sleep while watching a DVD together!

Saturday morning – we went back up to PMH early to see how the boys were getting on. I was feeling much brighter and more positive and to my delight was told that I would be able to have a double cuddle for the first time :) After the nurses sorted a few things and the Drs did their rounds we were set up in a comfy chair and the bubs were handed to me, first Max in one arm and then Blake! It was so nice to finally see what it felt like to hold them both and to have them together. Dan again took lots of photos and video and I relaxed back in the chair and enjoyed my cuddle. After a while I surrendered them to Dan and he had a turn but eventually they had to go back under the lights for their jaundice so after a few quick photos were taken of them side by side we handed them back to the nurses and then headed downstairs for a chat and something to drink. We went back up to say goodbye to Blake and Max before we left and the nurse told us that they would be trying them on milk again from the afternoon and see how they go. We rang that night to check on them and were told that Blake was on 2ml every three hours and was going really well, they were going to increase it to 4ml at the next feed! Max was still going ok on 2ml but they had not yet decided to increase his feeds.

So that brings us to now! I am very happy at the latest news of the feeding progress and am feeling very tired but quite relaxed. I have decided to go home tomorrow morning so we will be checking out of Hotel Murdoch by 10am tomorrow and then back off to PMH to see my little cherubs once more before going home to see my big babies (who I have missed incredibly, and am looking forward to being reunited with!)

3/6/07

Today I was discharged from SJOGH Murdoch. We got up early and packed up my room so that as soon as the midwife had seen me one final time we could leave. We headed into PMH before coming home and sat with the babies till about lunch time. Max and Blake aredoing quite well now. They are both stable off the CPAP and breathing well on their own. They have also started feeding them again and Max seems to be tolerating it well so he was going up to 4 ml every 3 hours this afternoon. Blake doesn't seem to be digesting his quite so well for some reason so they stopped feeding him for a little while and ordered some tummy x-rays. The X-rays came back and didn't actually show any reaso why he might have been having troubles so they were going to leave it 4 hours and then try 2mls again this afternoon. We got to have a cuddle of Blake but Max was under lights and the nurses were too busy at the time so we never got to hold little Max. It's so hard to believe that tomorrow my babies will be a week old and I have only held Max twice and Blake three times for a total of about 20 mins. It makes me feel sad when I think about them lying there in that hospital with so many strangers around them and they are not even in the same cot together. They must wonder where their brother has gone! I have also noticed that whenever I am by their bedside and I speak they seem to open their eyes and look for me – maybe my voice is familiar to them? I like to think it might give them some sort of comfort anyway.

ETA: The photos at the top of this post are:
1) Marnie having the first double cuddle 2.6.07
2) Blake
3) Max
4) Blake
5) Max
6) Blake