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.
Friday, 29 June 2007
Thursday, 28 June 2007
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.
Wednesday, 27 June 2007
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.
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.
Tuesday, 26 June 2007
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.
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.
Sunday, 24 June 2007
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
Saturday, 23 June 2007
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!
Friday, 22 June 2007
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.
"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.
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