Every now and again, something in my memory gets triggered and I remember very vividly how I felt at that time. It's usually the hours immediately after the birth that I remember. That lost, empty, sad feeling that my babies were gone from inside me, and no idea if they were still fighting or had died already.
Just now I was laying on my bed, November sun streaming through the window and I was reminded of the day David and I went and registered the babies births. I was so sad that day, being away from the babies, and sad to be there knowing that I could very well be back there soon to register a death.
Hmm, David has just arrived and disturbed my train of thought. I'll be back...
Saturday 12 November 2011
Thursday 18 August 2011
Tuesday 12 July 2011
Wednesday 6 July 2011
Harry
Just testing if this works....
http://www.youtube.com/watch?v=c_4ti-Z0Xho&feature=youtube_gdata_player
Sent from my iPhone
Into July 2011
So, I think two months have passed since I last managed to update here. The good news is things are pretty wonderful.
Both babies are now mobile,, and boy-oh-boy do they let me know it! I have to say that now they can move and get to where they want to be, they are so, so much happier. They have always been fairly content anyway but now life is easier than ever...well as easy as it can with twins and four other children.
We have had a few tiny accidents with Harry since he starting moving around. He is just so fast, and it took a little while to get into the habit of shutting baby gates, closing doors, and moving things off the floors. Don't tell the mother-in-law, but the worst incident was getting into the bathroom bin with one of David's disposable razors in it. Let's just say Harry looked like he had been garrotted. There was blood over his face, over his clothes and smeared all over the floor. Just as I spotted the carnage there was a knock at the door from a lady down the road, so I scooped him up, opened the door and pretended nothing had happened while chatting to her. God only knows what she must have been thinking. Joe was in the background trying to eat the plug-in air freshener and I just acted cool, like one child being covered in blood and the other eating something toxic is an every day event in the Tibbles house! After a mammoth clean up and wash, it turns out that no surgery was required and Harry actually had a tiny, tiny knick on his thumb. I don't think he ever noticed anything was amiss. Oh, and Joe didn't seem to suffer any consequences from his air freshener snack either, but he smelled pleasant for the rest of the day.
Other regular twin casualties include the bookcase in the hallway, the DVD rack, and the drawers with the wii games in. Top prize though always goes to the cat water dish. Harry can detect the kitchen gate being left open at a hundred paces. He sniffs it out, and before you know it he has bum shuffled up the hallway, across the front room, into the kitchen and will be sat in a puddle of water proudly waving an empty water bowl. We are getting better at reminding everyone to close the gate, but well, you can imagine what it's like with so many people in and out. And anyway, he always looks so pleased with himself once he has upended the water that it must be good for his self esteem - that's what I console myself with anyway, when I am changing his clothes for the third time in a morning, and drying the floor, again.
Health wise the babies are ticking along nicely. We are still dealing with Harry's post RSV wheeze. It comes and goes but doesn't seem to bother him too much and seems to be one of those things that sounds way worse than it is. A few puffs on his inhaler and the is an immediate improvement. Heh, I make that sound so easy don't I? Giving him his inhaler is actually a two man job. He needs one person to pin his body and arms down, and another to hold his head still and deal the the inhaler and mask. He really, really hates it but it's one of life's necessary evils sometimes.
On Friday we have finally got appointments to go back to see the ENT man about both babies chronic ear infections. I thought I was going to have good news about their ears, as for a little while we had no infections, perforations or issues at all. Then suddenly they were back. Harry's as usual were worse, but it was actually Joe who was affected first. This time I opted to treat with antibiotics in hopes we would clear it up quickly but it doesn't seem to have made any difference. I just hope we can get it sorted for them, they are troopers but when their eardrums perforate it really is a sickening, heartbreaking cry.
We aren't being seen any more by the paediatrician at the Child Development Centre. I know this should be seen as a good thing, that he thinks the babies are fine and have no issues...but you know, I just can't help wondering if they have missed something. How can they be so sure that the babies are okay when they were so early? I'm really not happy with how little monitoring they get but I'm supposed to be pleased that my babies are considered normal, right? And I am pleased, but what if....
I will try to post some videos and photos on here. There must be an easier way of doing it than I have worked out. By the way, if you are reading this and would like to know more often how the babies are doing, then I do update my Facebook page with lots of videos and photos. If you want to add me as a friend then feel free.
Both babies are now mobile,, and boy-oh-boy do they let me know it! I have to say that now they can move and get to where they want to be, they are so, so much happier. They have always been fairly content anyway but now life is easier than ever...well as easy as it can with twins and four other children.
We have had a few tiny accidents with Harry since he starting moving around. He is just so fast, and it took a little while to get into the habit of shutting baby gates, closing doors, and moving things off the floors. Don't tell the mother-in-law, but the worst incident was getting into the bathroom bin with one of David's disposable razors in it. Let's just say Harry looked like he had been garrotted. There was blood over his face, over his clothes and smeared all over the floor. Just as I spotted the carnage there was a knock at the door from a lady down the road, so I scooped him up, opened the door and pretended nothing had happened while chatting to her. God only knows what she must have been thinking. Joe was in the background trying to eat the plug-in air freshener and I just acted cool, like one child being covered in blood and the other eating something toxic is an every day event in the Tibbles house! After a mammoth clean up and wash, it turns out that no surgery was required and Harry actually had a tiny, tiny knick on his thumb. I don't think he ever noticed anything was amiss. Oh, and Joe didn't seem to suffer any consequences from his air freshener snack either, but he smelled pleasant for the rest of the day.
Other regular twin casualties include the bookcase in the hallway, the DVD rack, and the drawers with the wii games in. Top prize though always goes to the cat water dish. Harry can detect the kitchen gate being left open at a hundred paces. He sniffs it out, and before you know it he has bum shuffled up the hallway, across the front room, into the kitchen and will be sat in a puddle of water proudly waving an empty water bowl. We are getting better at reminding everyone to close the gate, but well, you can imagine what it's like with so many people in and out. And anyway, he always looks so pleased with himself once he has upended the water that it must be good for his self esteem - that's what I console myself with anyway, when I am changing his clothes for the third time in a morning, and drying the floor, again.
Health wise the babies are ticking along nicely. We are still dealing with Harry's post RSV wheeze. It comes and goes but doesn't seem to bother him too much and seems to be one of those things that sounds way worse than it is. A few puffs on his inhaler and the is an immediate improvement. Heh, I make that sound so easy don't I? Giving him his inhaler is actually a two man job. He needs one person to pin his body and arms down, and another to hold his head still and deal the the inhaler and mask. He really, really hates it but it's one of life's necessary evils sometimes.
On Friday we have finally got appointments to go back to see the ENT man about both babies chronic ear infections. I thought I was going to have good news about their ears, as for a little while we had no infections, perforations or issues at all. Then suddenly they were back. Harry's as usual were worse, but it was actually Joe who was affected first. This time I opted to treat with antibiotics in hopes we would clear it up quickly but it doesn't seem to have made any difference. I just hope we can get it sorted for them, they are troopers but when their eardrums perforate it really is a sickening, heartbreaking cry.
We aren't being seen any more by the paediatrician at the Child Development Centre. I know this should be seen as a good thing, that he thinks the babies are fine and have no issues...but you know, I just can't help wondering if they have missed something. How can they be so sure that the babies are okay when they were so early? I'm really not happy with how little monitoring they get but I'm supposed to be pleased that my babies are considered normal, right? And I am pleased, but what if....
I will try to post some videos and photos on here. There must be an easier way of doing it than I have worked out. By the way, if you are reading this and would like to know more often how the babies are doing, then I do update my Facebook page with lots of videos and photos. If you want to add me as a friend then feel free.
Tuesday 3 May 2011
Friday 29 April 2011
It's the end of April already?
Where is the year going? I can't believe we are almost into May already.
As you can see from the pictures below the babies are thriving. Since my last update both babies have had repeat hearing tests and been seen by the ENT specialist. Both Joe and Harry have reduced hearing due to fluid in their ears so the next step for them will probably be to have grommets fitted. This is a really minor procedure and they will be in and out of hospital in a day if there are no complications.
Joe has had an eye test as we thought we could see a squint. The person examining him couldn't see him squinting, but did say he may need glasses as he has an astigmatism which basically means his eye is rugby ball shaped instead of round. On the 26th May he will have a more in-depth examination where his pupils will be artificially dilated so the dr can get a clear view of his eyes and we will find out the next step.
Neither baby as yet is crawling. Harry certainly has the capability but is lazy and cries as soon as he is on his tummy but he is starting to shuffle around on his bottom - he mainly goes around and around in circles though! Both babies can now clap their hands when asked, and we are working hard on waving 'bye bye'. Stranger awareness has kicked in too and they aren't too keen on unfamiliar people getting too close to them until they are used to them.
Harry is a total pro in his baby walker. He goes at a hundred miles an hour in it, and God help your ankles if he catches you unawares! David and I are both sporting bruises where he has ran into us. He goes forwards, backwards, can spin around in it and loves the freedom it gives him. Poor Joe can't quite figure out what a baby walker is for and just stands still.
Current weights are around 18-19 pounds, with Harry being about a pound heavier than Joe. Joe eats like the proverbial horse - anything and everything shoved into his mouth as fast as he can. We have recently swapped their carseats for forward facing ones even though they are only just on the weight limit to do so. I was hoping the new carseats would give us a little more room in the back of the car but that hasnt been the case. They seem happy enough to be able to see more, and I find it easier being able to see them by looking in the mirror.
Harry is still needing his inhaler from time to time. He is still quite wheezy and has an irritating dry cough that disturbs him when sleeping. It's not all the time, maybe every two or three weeks he will need to use his inhaler for a few days in a row so I'm hoping this is still a left over Fromm the RSV in January and not something more serious and long term such as asthma.
We ticked off another milestone last weekend when we had a big shuffle around of the bedrooms and moved the twins into their own room and into separate cots. Until then they had shared, one baby at each end of the bed. I was a bit sad at splitting them up but they are just too big and wriggly now to be comfortable together. Harry especially had a habit of turning round and sleeping on top of Joe.
They are so funny and definitely taking more notice of each other now. When one starts babbling away, the other will often join in, particularly in the car. When sitting next to each other in the trolley doing the shopping they pull each others hair, tug ears, poke each other etc etc....hopefully not a sign of things to come, although I suspect I should get used to refereeing. Unfortunately when Joe grabs a handful of Harry's lovely, curly hair he isn't old enough to know he is hurting him and as there is little going on in the hair-growth department on Joe's head, Harry cannot even reap his revenge!
As ever, I count my blessings that they are here, that they are perfect and that they are mine. I don't think a day has yet gone by where I haven't told someone how lucky I am. I feel truly blessed and hope that I can make their lives as happy as they have made mine. Every baby is special, but I am sure you can forgive me for believing that Joe and Harry are just a tiny bit more special than most.
As you can see from the pictures below the babies are thriving. Since my last update both babies have had repeat hearing tests and been seen by the ENT specialist. Both Joe and Harry have reduced hearing due to fluid in their ears so the next step for them will probably be to have grommets fitted. This is a really minor procedure and they will be in and out of hospital in a day if there are no complications.
Joe has had an eye test as we thought we could see a squint. The person examining him couldn't see him squinting, but did say he may need glasses as he has an astigmatism which basically means his eye is rugby ball shaped instead of round. On the 26th May he will have a more in-depth examination where his pupils will be artificially dilated so the dr can get a clear view of his eyes and we will find out the next step.
Neither baby as yet is crawling. Harry certainly has the capability but is lazy and cries as soon as he is on his tummy but he is starting to shuffle around on his bottom - he mainly goes around and around in circles though! Both babies can now clap their hands when asked, and we are working hard on waving 'bye bye'. Stranger awareness has kicked in too and they aren't too keen on unfamiliar people getting too close to them until they are used to them.
Harry is a total pro in his baby walker. He goes at a hundred miles an hour in it, and God help your ankles if he catches you unawares! David and I are both sporting bruises where he has ran into us. He goes forwards, backwards, can spin around in it and loves the freedom it gives him. Poor Joe can't quite figure out what a baby walker is for and just stands still.
Current weights are around 18-19 pounds, with Harry being about a pound heavier than Joe. Joe eats like the proverbial horse - anything and everything shoved into his mouth as fast as he can. We have recently swapped their carseats for forward facing ones even though they are only just on the weight limit to do so. I was hoping the new carseats would give us a little more room in the back of the car but that hasnt been the case. They seem happy enough to be able to see more, and I find it easier being able to see them by looking in the mirror.
Harry is still needing his inhaler from time to time. He is still quite wheezy and has an irritating dry cough that disturbs him when sleeping. It's not all the time, maybe every two or three weeks he will need to use his inhaler for a few days in a row so I'm hoping this is still a left over Fromm the RSV in January and not something more serious and long term such as asthma.
We ticked off another milestone last weekend when we had a big shuffle around of the bedrooms and moved the twins into their own room and into separate cots. Until then they had shared, one baby at each end of the bed. I was a bit sad at splitting them up but they are just too big and wriggly now to be comfortable together. Harry especially had a habit of turning round and sleeping on top of Joe.
They are so funny and definitely taking more notice of each other now. When one starts babbling away, the other will often join in, particularly in the car. When sitting next to each other in the trolley doing the shopping they pull each others hair, tug ears, poke each other etc etc....hopefully not a sign of things to come, although I suspect I should get used to refereeing. Unfortunately when Joe grabs a handful of Harry's lovely, curly hair he isn't old enough to know he is hurting him and as there is little going on in the hair-growth department on Joe's head, Harry cannot even reap his revenge!
As ever, I count my blessings that they are here, that they are perfect and that they are mine. I don't think a day has yet gone by where I haven't told someone how lucky I am. I feel truly blessed and hope that I can make their lives as happy as they have made mine. Every baby is special, but I am sure you can forgive me for believing that Joe and Harry are just a tiny bit more special than most.
Friday 25 February 2011
Hemangioma birthmarks
I just wanted to share a video link that I just found. Premature babies are much more likely to have hemangioma birthmarks. Millie, a 34 weeker had/has (it's almost gone) quite a large one on her left thigh, Joe has a big one on his tummy and several small ones dotted around, and Harry probably has around 30 in total, luckily all relatively small and mostly on his body where they can be covered.
This is an amazing, amazing video which shows how quickly they grow and the dramatic effects of having it removed. Stick with it through the talking at the beginning.
http://www.preemiebabies101.com/video-birth-and-death-of-a-hemangioma/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+PreemieBabies101+%28Preemie+Babies+101%29
This is an amazing, amazing video which shows how quickly they grow and the dramatic effects of having it removed. Stick with it through the talking at the beginning.
http://www.preemiebabies101.com/video-birth-and-death-of-a-hemangioma/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+PreemieBabies101+%28Preemie+Babies+101%29
Thursday 24 February 2011
I am such a bad blogger
Despite getting frustrated when checking other blogs and finding them not having been updated for weeks, I am still useless at updating my own.
Since Christmas I don't believe we have had a single complete week free of the babies being ill. It all started of course with Harry's ears, then Joe's ears also got bad, on the night of their birthday Joe started showing signs of bronchiolitis which began two weeks of what can only be described as absolute hell. Although Joe got very wheezy and snotty, poor Harry got incredibly poorly needing breathing treatments and oxygen in hospital. They were both diagnosed with RSV but unfortunately there is no magic cure for this virus apart from time and waiting for it to run it's course.
It took Harry a good two weeks to get back to normal. He stopped drinking, became very dehydrated and refused all food. In ten days he lost over a pound in weight. As a parent I don't think I have ever been so worried about one of my children, I was utterly convinced that he was going to become seriously ill and was very scared about bringing him home. He just seemed too poorly to be sent home without proper monitoring so I took him back to the ward every day for a week to check his SATs which thank goodness, despite how sick he was, remained stable. He came home with an inhaler to use which we are having to do every so often as he has been left with a bit of a wheeze. Thank goodness the RSV season is now almost over.
I am of course kicking myself for not being more pushy for the RSV vaccine that is available. My trouble is that I have a blind faith that my babies will always be fine and just sail through everything. The last few weeks have been a real eye opener about just how fragile they are and how much more vulnerable they can be to illnesses that a 'regular' baby would just shake off. Luck was on our side this time and Harry has made an almost complete recovery but I have certainly learned not to take things for granted again.
Due to Harry being hospitalised, we missed his appointment with the physiotherapist at the beginning of the month. For a while my concernes regarding the stiffness in his arms subsided, but they are back with a vengeance now. I am concerned that he doesn't seem to be able to stretch his arms up past shoulder height. When I put Joe's hands in the air he can do it easily, but Harry just can't. His arms just wont move in that direction and he cries. We cannot get another appointment on the NHS until May and I am sorely tempted to seek a private opinion. David isn't keen but has left it up to me to decide.
Joe has been referred to have his eyes checked as he has a squint in his left eye. It's not too bad and not noticeable all the time. I'm not sure if these things ever resolve on their own but I'm hoping he won't need too much intervention. A little boy of a friend of ours who was also premature had a small operation a few weeks ago to fix a squint but fingers crossed Joe's isn't that serious. We've not had the appointment through yet but hopefully wont have to wait too long.
Next week is the babies appointments about their chronic ear infections. Joe had a hearing test last week which showed moderate hearing loss, probably due to fluid in his ears, so I am really hoping they don't adopt a 'wait and see' approach. I'm not worried about Harry's hearing as he responds to noises much quieter than Joe does, but his ear discharges pus at least once a week which cannot be good.
Apart from the hospital we have been virtually housebound now for about two months. I am hoping for nicer weather and healthy babies so we can catch up with our friends again. I feel like we have lost touch a bit recently.
Benny has just wandered in and told me 'to be honest mum, I think you are wasting your time doing the blog...no-one checks it anymore because you never update it.' Thanks a bunch Benster, but I hope he is wrong!
Since Christmas I don't believe we have had a single complete week free of the babies being ill. It all started of course with Harry's ears, then Joe's ears also got bad, on the night of their birthday Joe started showing signs of bronchiolitis which began two weeks of what can only be described as absolute hell. Although Joe got very wheezy and snotty, poor Harry got incredibly poorly needing breathing treatments and oxygen in hospital. They were both diagnosed with RSV but unfortunately there is no magic cure for this virus apart from time and waiting for it to run it's course.
It took Harry a good two weeks to get back to normal. He stopped drinking, became very dehydrated and refused all food. In ten days he lost over a pound in weight. As a parent I don't think I have ever been so worried about one of my children, I was utterly convinced that he was going to become seriously ill and was very scared about bringing him home. He just seemed too poorly to be sent home without proper monitoring so I took him back to the ward every day for a week to check his SATs which thank goodness, despite how sick he was, remained stable. He came home with an inhaler to use which we are having to do every so often as he has been left with a bit of a wheeze. Thank goodness the RSV season is now almost over.
I am of course kicking myself for not being more pushy for the RSV vaccine that is available. My trouble is that I have a blind faith that my babies will always be fine and just sail through everything. The last few weeks have been a real eye opener about just how fragile they are and how much more vulnerable they can be to illnesses that a 'regular' baby would just shake off. Luck was on our side this time and Harry has made an almost complete recovery but I have certainly learned not to take things for granted again.
Due to Harry being hospitalised, we missed his appointment with the physiotherapist at the beginning of the month. For a while my concernes regarding the stiffness in his arms subsided, but they are back with a vengeance now. I am concerned that he doesn't seem to be able to stretch his arms up past shoulder height. When I put Joe's hands in the air he can do it easily, but Harry just can't. His arms just wont move in that direction and he cries. We cannot get another appointment on the NHS until May and I am sorely tempted to seek a private opinion. David isn't keen but has left it up to me to decide.
Joe has been referred to have his eyes checked as he has a squint in his left eye. It's not too bad and not noticeable all the time. I'm not sure if these things ever resolve on their own but I'm hoping he won't need too much intervention. A little boy of a friend of ours who was also premature had a small operation a few weeks ago to fix a squint but fingers crossed Joe's isn't that serious. We've not had the appointment through yet but hopefully wont have to wait too long.
Next week is the babies appointments about their chronic ear infections. Joe had a hearing test last week which showed moderate hearing loss, probably due to fluid in his ears, so I am really hoping they don't adopt a 'wait and see' approach. I'm not worried about Harry's hearing as he responds to noises much quieter than Joe does, but his ear discharges pus at least once a week which cannot be good.
Apart from the hospital we have been virtually housebound now for about two months. I am hoping for nicer weather and healthy babies so we can catch up with our friends again. I feel like we have lost touch a bit recently.
Benny has just wandered in and told me 'to be honest mum, I think you are wasting your time doing the blog...no-one checks it anymore because you never update it.' Thanks a bunch Benster, but I hope he is wrong!
Wednesday 2 February 2011
Friday 28 January 2011
A very special cake for two very special little boys. I can highly recommend Hayley who made the cakes for us. She had a very short four days to complete our order as I left it so late to organize. I think everyone can agree what a spectacular job she has done. Her email address is sweetcheekscupcakes@hotmail.co.uk and can be found on Facebook by searching for Sweetcheeks.
One whole year old!
Exactly a year ago I was about to give birth. At just after eight pm my two little boys made their very sudden, but not unexpected, early arrival. To say the last twelve months have been a roller coaster of emotions would be an understatement.
The first three days I was all over the place. Immediately after the birth I was blaming myself, apologising and just wanted the world to stop. After three or four hours NICU had stabilised the babies and we were allowed to see them. Once I saw them I had absolute faith that they would be okay. They didn't look much like babies and were covered in wires and tubes, but they were mine and I loved them right from the beginning. I couldn't touch them, or spend more than a few minutes with them as they needed such intensive care but I was in some kind of post-birth euphoria which lasted until I arrived in Portsmouth with them two days later. When we arrived in Portsmouth we were shown to the parents waiting room and told NICU was closed to parents as the drs were trying to stabilise a very sick baby. We waited in that room for two hours before being told that it wasn't one of my babies that was ill. I cannot describe how sick I felt thinking that my baby was dying across the hallway and I wasn't able to be with him. In the whole of the twelve weeks they were in Portsmouth that never happened again. It was incredibly bad luck that this happened on our first visit when we were so unfamiliar with everything and everyone.
The emotions continued to be honest until I finally got the babies home. Juggling home and hospital life was challenging to say the least. After seventeen long weeks the babies came home and the fun really began :)
I have been both dreading and looking forward to today. Dreading the inevitable emotions that would arise, yet looking forward to celebrating such a special year. It's been such a wonderful day. The babies had their first taste of cake, and have loved all their new toys. Pics coming up in a few minutes.....
The first three days I was all over the place. Immediately after the birth I was blaming myself, apologising and just wanted the world to stop. After three or four hours NICU had stabilised the babies and we were allowed to see them. Once I saw them I had absolute faith that they would be okay. They didn't look much like babies and were covered in wires and tubes, but they were mine and I loved them right from the beginning. I couldn't touch them, or spend more than a few minutes with them as they needed such intensive care but I was in some kind of post-birth euphoria which lasted until I arrived in Portsmouth with them two days later. When we arrived in Portsmouth we were shown to the parents waiting room and told NICU was closed to parents as the drs were trying to stabilise a very sick baby. We waited in that room for two hours before being told that it wasn't one of my babies that was ill. I cannot describe how sick I felt thinking that my baby was dying across the hallway and I wasn't able to be with him. In the whole of the twelve weeks they were in Portsmouth that never happened again. It was incredibly bad luck that this happened on our first visit when we were so unfamiliar with everything and everyone.
The emotions continued to be honest until I finally got the babies home. Juggling home and hospital life was challenging to say the least. After seventeen long weeks the babies came home and the fun really began :)
I have been both dreading and looking forward to today. Dreading the inevitable emotions that would arise, yet looking forward to celebrating such a special year. It's been such a wonderful day. The babies had their first taste of cake, and have loved all their new toys. Pics coming up in a few minutes.....
Friday 24 December 2010
Christmas Eve
I am feeling very emotional this evening. It's Christmas eve, and tomorrow is the babies' very first Christmas. I cant put into words how having Joe and Harry here with us makes me feel. This time last year things were looking very grim indeed for them and no-one thought we'd make it as far as viability, but here we are, almost eleven months on with two very special little boys sharing our lives.
Merry Christmas to all our friends and family, from all of us xxxxx
Merry Christmas to all our friends and family, from all of us xxxxx
Tuesday 21 December 2010
Bad ear for Harry
I cant remember if i mentioned in my last update that Harry has been having a problem with one of his ears. It has been discharging nasty pus and oozy stuff for over four weeks now and hasn't got any better despite oral antibiotics and ear drops.
I took him back to the gp yesterday about it as he is generally getting more and more irritable and is having problems eating now which i hope is associated with the pain in his ear. We were sent straight to the hospital to be reviewed by the ENT specialists who say that it looks like a very nasty infection in the actual ear canal which is very rare in babies, and more common in adults who swim a lot. The last swab that was taken has shown a bacteria called psuedenomas which normally affects immune-compromised people so he has been given antibiotics and ear drops specifically to fight this bug. We have to go back in just over a week for review and if it's no better then he will be put under anaesthetic to have a proper look.
The dr said they might have problems finding an anaesthetist happy to work with him due to the hole in his heart, but we'll cross that bridge when we come to it. Fingers crossed the new medicines make it better because quite frankly I need my happy baby back.
Time to wake them up from their morning nap now. They have already been asleep an hour and a half after deciding five thirty was a good time start the day! Someone needs to remind those babies that the day doesn't officially start until at least seven am.
I took him back to the gp yesterday about it as he is generally getting more and more irritable and is having problems eating now which i hope is associated with the pain in his ear. We were sent straight to the hospital to be reviewed by the ENT specialists who say that it looks like a very nasty infection in the actual ear canal which is very rare in babies, and more common in adults who swim a lot. The last swab that was taken has shown a bacteria called psuedenomas which normally affects immune-compromised people so he has been given antibiotics and ear drops specifically to fight this bug. We have to go back in just over a week for review and if it's no better then he will be put under anaesthetic to have a proper look.
The dr said they might have problems finding an anaesthetist happy to work with him due to the hole in his heart, but we'll cross that bridge when we come to it. Fingers crossed the new medicines make it better because quite frankly I need my happy baby back.
Time to wake them up from their morning nap now. They have already been asleep an hour and a half after deciding five thirty was a good time start the day! Someone needs to remind those babies that the day doesn't officially start until at least seven am.
Friday 10 December 2010
It's been a while
So it's been a while since the last update. My laptop has died a painful death and typing on the iPad is a real pain so I will use that as the reason for not filling this in sooner.
The babies both continue to thrive. That's the main crux of things I guess. They are eating loads, sleeping lots, and being as adorable as ever. In the last couple of months their different personalities have really developed. Joe is by far the baby who demands more attention. He sleeps less, smiles are harder to get and he likes to be entertained more than Harry. Harry laughs and smiles at anyone, he is truly such a happy, easy baby and as long as he is fed, is happy to just go with the flow.
We had an appointment last week at the Child Development Centre and they are very happy with both boys' progress. They are both rolling from tummy to back, bringing their hands to the middle, and passing toys from hand to hand. Sitting is coming along nicely, with Joe being able to support himself for a minute or two now and Harry isn't far behind him. They aren't concerned about Harry's stiffness, although they did agree he is quite tight in his arms and upper body they say it is still on the spectrum of being considered normal.
The boys were both weighed today and harry is up to 16lbs 8oz and Joe is right around 15lbs. Joe physically feels very light and slight compared to Harry, but i think he actually eats more. Harry is still struggling to move on from very smooth foods and tends to gag easily. I'm not really too concerned yet but it's something to keep our eyes on in the coming weeks. Both babies are still on their prescribed premature baby milk but i suspect at our next hospital appointment that that will be coming to an end. They aren't really keen on normal baby milk as we have tried when we ran out so i will use my persuasion skills to try and keep them on it for a bit longer yet.
Next month it is their first birthday. I just cant believe it. I know i end nearly every update by saying this, but i really, really cant believe or understand why we have been lucky enough to get two 23 weekers who appear to have emerged unscathed. They are absolute miracles. I cherish every day with them knowing how hard they fought to be here.
The babies both continue to thrive. That's the main crux of things I guess. They are eating loads, sleeping lots, and being as adorable as ever. In the last couple of months their different personalities have really developed. Joe is by far the baby who demands more attention. He sleeps less, smiles are harder to get and he likes to be entertained more than Harry. Harry laughs and smiles at anyone, he is truly such a happy, easy baby and as long as he is fed, is happy to just go with the flow.
We had an appointment last week at the Child Development Centre and they are very happy with both boys' progress. They are both rolling from tummy to back, bringing their hands to the middle, and passing toys from hand to hand. Sitting is coming along nicely, with Joe being able to support himself for a minute or two now and Harry isn't far behind him. They aren't concerned about Harry's stiffness, although they did agree he is quite tight in his arms and upper body they say it is still on the spectrum of being considered normal.
The boys were both weighed today and harry is up to 16lbs 8oz and Joe is right around 15lbs. Joe physically feels very light and slight compared to Harry, but i think he actually eats more. Harry is still struggling to move on from very smooth foods and tends to gag easily. I'm not really too concerned yet but it's something to keep our eyes on in the coming weeks. Both babies are still on their prescribed premature baby milk but i suspect at our next hospital appointment that that will be coming to an end. They aren't really keen on normal baby milk as we have tried when we ran out so i will use my persuasion skills to try and keep them on it for a bit longer yet.
Next month it is their first birthday. I just cant believe it. I know i end nearly every update by saying this, but i really, really cant believe or understand why we have been lucky enough to get two 23 weekers who appear to have emerged unscathed. They are absolute miracles. I cherish every day with them knowing how hard they fought to be here.
Thursday 9 December 2010
IMG00799-20101209-1840.jpg
From Sarah, using BlackBerry® from Orange
Saturday 27 November 2010
Monday 22 November 2010
Sunday 24 October 2010
October's update
We have had a pretty uneventful month so not a great deal to blog about.
The babies are physically progressing wonderfully and are getting so much stronger. It's lovely to see the small improvements they make and we really appreciate and celebrate everything they do. They are still a way off being able to sit alone but both babies are experts at lifting their heads and shoulders off the ground when laying on their tummies, and they can both grab toys and put them in their mouths. Harry has rolled over a few times overnight, from his tummy to his back, and Joe can often be found sleeping on his side now, but neither has attempted to roll during the day yet.
Today the babies had their first real food - some toast and butter! Harry has some problems with his hands so I mostly held it for him to suck but he seemed to enjoy it. Joe snatched his and annihilated it with a minute. I was a little anxious as we haven't even progressed from pureed food to lumps yet so was expecting their gag relexes to kick in but they did well and we will continue with a little each day.
As mentioned above we have some concerns about Harry's hands. If you look at his pictures, particularly the ones of him and Joe in their new hats you will notice how stiff and clenched his hands look. The main problem seems to be with his thumbs. He is actually able to open his hands but his thumbs tend to stay turned towards his palms. This obviously stops him from being able to grab things effectively. His torso is also quite stiff and his shoulders feel like they are kind of pulling back all the time, like he has to physically make an effort to bring his arms forward instead of that being their natural position. We will mention it at the next developmental check up which is the end of November and hopefully they will suggest some physiotherapy to loosen him up.
Joe was seen a couple of weeks ago by the pediatrician as there are some concerns about his slow weight gain. The long and the short of it is that he is healthy and happy, just small so we were sent away and told not to worry unless he actually starts losing weight.
This week is a busy one for the babies. Tomorrow they are getting two flu jabs each, and on Wednesday they are due to have kidney scans to check for calcium deposits caused by prematurity. Both babies have blood and protein in their urine so we are hoping that the scans show calcium deposits which will improve by itself as they grow. The other concern is that they have the same kidney condition as their brother which is as yet undiagnosed properly. A kidney biopsy and genetic testing have failed to identify the cause of Ben's blood and protein. He is healthy and well and we don't give it much thought apart from the quarterly visits to the hospital.
The babies are physically progressing wonderfully and are getting so much stronger. It's lovely to see the small improvements they make and we really appreciate and celebrate everything they do. They are still a way off being able to sit alone but both babies are experts at lifting their heads and shoulders off the ground when laying on their tummies, and they can both grab toys and put them in their mouths. Harry has rolled over a few times overnight, from his tummy to his back, and Joe can often be found sleeping on his side now, but neither has attempted to roll during the day yet.
Today the babies had their first real food - some toast and butter! Harry has some problems with his hands so I mostly held it for him to suck but he seemed to enjoy it. Joe snatched his and annihilated it with a minute. I was a little anxious as we haven't even progressed from pureed food to lumps yet so was expecting their gag relexes to kick in but they did well and we will continue with a little each day.
As mentioned above we have some concerns about Harry's hands. If you look at his pictures, particularly the ones of him and Joe in their new hats you will notice how stiff and clenched his hands look. The main problem seems to be with his thumbs. He is actually able to open his hands but his thumbs tend to stay turned towards his palms. This obviously stops him from being able to grab things effectively. His torso is also quite stiff and his shoulders feel like they are kind of pulling back all the time, like he has to physically make an effort to bring his arms forward instead of that being their natural position. We will mention it at the next developmental check up which is the end of November and hopefully they will suggest some physiotherapy to loosen him up.
Joe was seen a couple of weeks ago by the pediatrician as there are some concerns about his slow weight gain. The long and the short of it is that he is healthy and happy, just small so we were sent away and told not to worry unless he actually starts losing weight.
This week is a busy one for the babies. Tomorrow they are getting two flu jabs each, and on Wednesday they are due to have kidney scans to check for calcium deposits caused by prematurity. Both babies have blood and protein in their urine so we are hoping that the scans show calcium deposits which will improve by itself as they grow. The other concern is that they have the same kidney condition as their brother which is as yet undiagnosed properly. A kidney biopsy and genetic testing have failed to identify the cause of Ben's blood and protein. He is healthy and well and we don't give it much thought apart from the quarterly visits to the hospital.
Wednesday 20 October 2010
Thursday 14 October 2010
Monday 11 October 2010
Wednesday 29 September 2010
Monday 20 September 2010
Catching up
So I am officially probably the worst blogger around. I so very often sit down to update the blog, but something will happen to distract me - a baby will cry, a child will fight, the phone will ring etc etc. I'll try and remember everything that has happened over the last month or so.
A couple of weeks ago we had a 'big' appointment at the Child Development Centre with a consultant doctor, medical student, health visitor, occupational therapist and physiotherapist all assessing the babies to identify where any extra help is needed and if there are any 'red flags' to keep an eye on with regards to neurological conditions such as cerebral palsy. The babies were little stars during the appointment and although they weren't rolling or grabbing for toys or anything, no-one saw anything specific to be concerned about at this stage. This is such fantastic news as cerebral palsy continues to be our main concern for the future.
Some stats:
1 in 10 premature babies will develop a permanent disability such as lung disease, cerebral palsy, blindness or deafness.
50% of premature babies born before the 26th week of gestation are disabled, a quarter severely so.
Of children born before 26 weeks' gestation, results in 241 of the surviving children at six years (early school age) indicate a high level of disability as follows:
22% severe disability (defined as cerebral palsy but not walking, low cognitive scores, blindness, profound deafness)
24% moderate disability (defined as cerebral palsy but walking, IQ/cognitive scores in the special needs range, lesser degree of visual or hearing impairment)
34% mild disability (defined as low IQ/cognitive score, squint, requiring glasses)
20% no problems
We were shown some positions to encourage the babies to bring their hands together which we have been doing daily and there has been a huge improvement. Both babies are now reaching for toys. Joe has slightly better co-ordination and is less stiff in his arms and hands so finds it easier to grab things but Harry tries valiantly to sweep at anything waved over him. We have also been encouraged to put the babies down to play more often on their tummies. Tummy play is a dangerous activity with so many heavy-footed older siblings tramping around but we have given it a go, and again have seen big improvements in head and neck control, particularly with Joe. Joe is now able to lift his head and shoulders for a short time while laying on his tummy, whereas before he would just lay down and move his head from side-to-side. Harry isn't quite as good but improving all the time.
Today both babies had hip scans which were clear. The ladies scanning them couldn't believe how placid and calm Joe and Harry were. Neither of them made a murmour through the whole appointment even when they were being man-handled into various positions as the lady scanning was just learning what to do.
An on-going concern at the moment is Joe's weight-gain, or lack of it. He is currently tipping the scales at 12lb 8oz, which is a loss of 1oz from 2 weeks ago. He just doesn't seem to have an appetite. He'll suck his bottle with gusto for 20 minutes, for us to remove it from his mouth and see he has only taken 2oz. He doesn't seem hungry and with a lot of patience and encouragement we can usually get him to take 4oz per feed but that is still amounting to around only 16oz a day or less. Upon advice from the health visitor we are stopping his solid food for a few days to see if it increases his desire for milk, but I won't be holding my breath. Watch this space.
Porky Harry is 13lbs 9oz. They are physically very different in almost every way but are both absolutely amazing, wonderful, happy babies. Everyone comments on how lovely they are and I have to say I agree. They really are the best.
A couple of weeks ago we had a 'big' appointment at the Child Development Centre with a consultant doctor, medical student, health visitor, occupational therapist and physiotherapist all assessing the babies to identify where any extra help is needed and if there are any 'red flags' to keep an eye on with regards to neurological conditions such as cerebral palsy. The babies were little stars during the appointment and although they weren't rolling or grabbing for toys or anything, no-one saw anything specific to be concerned about at this stage. This is such fantastic news as cerebral palsy continues to be our main concern for the future.
Some stats:
1 in 10 premature babies will develop a permanent disability such as lung disease, cerebral palsy, blindness or deafness.
50% of premature babies born before the 26th week of gestation are disabled, a quarter severely so.
Of children born before 26 weeks' gestation, results in 241 of the surviving children at six years (early school age) indicate a high level of disability as follows:
22% severe disability (defined as cerebral palsy but not walking, low cognitive scores, blindness, profound deafness)
24% moderate disability (defined as cerebral palsy but walking, IQ/cognitive scores in the special needs range, lesser degree of visual or hearing impairment)
34% mild disability (defined as low IQ/cognitive score, squint, requiring glasses)
20% no problems
We were shown some positions to encourage the babies to bring their hands together which we have been doing daily and there has been a huge improvement. Both babies are now reaching for toys. Joe has slightly better co-ordination and is less stiff in his arms and hands so finds it easier to grab things but Harry tries valiantly to sweep at anything waved over him. We have also been encouraged to put the babies down to play more often on their tummies. Tummy play is a dangerous activity with so many heavy-footed older siblings tramping around but we have given it a go, and again have seen big improvements in head and neck control, particularly with Joe. Joe is now able to lift his head and shoulders for a short time while laying on his tummy, whereas before he would just lay down and move his head from side-to-side. Harry isn't quite as good but improving all the time.
Today both babies had hip scans which were clear. The ladies scanning them couldn't believe how placid and calm Joe and Harry were. Neither of them made a murmour through the whole appointment even when they were being man-handled into various positions as the lady scanning was just learning what to do.
An on-going concern at the moment is Joe's weight-gain, or lack of it. He is currently tipping the scales at 12lb 8oz, which is a loss of 1oz from 2 weeks ago. He just doesn't seem to have an appetite. He'll suck his bottle with gusto for 20 minutes, for us to remove it from his mouth and see he has only taken 2oz. He doesn't seem hungry and with a lot of patience and encouragement we can usually get him to take 4oz per feed but that is still amounting to around only 16oz a day or less. Upon advice from the health visitor we are stopping his solid food for a few days to see if it increases his desire for milk, but I won't be holding my breath. Watch this space.
Porky Harry is 13lbs 9oz. They are physically very different in almost every way but are both absolutely amazing, wonderful, happy babies. Everyone comments on how lovely they are and I have to say I agree. They really are the best.
Friday 17 September 2010
Wednesday 15 September 2010
Monday 13 September 2010
Sunday 12 September 2010
Saturday 11 September 2010
Tuesday 7 September 2010
Friday 27 August 2010
A long overdue update
I can't believe it's been nearly a month since I last updated. The days and weeks just seem to fly by and I don't have much to say any more.
Currently our main issues are with ears. In my last update, Joe's right eardrum has perforated. A couple of weeks later, on the same day both Joe and Harry's left ears perforated so were once again on antibiotics, and after a horrible night with Joe last night, his left eardrum has perforated again today and he is back on medicine to treat it.
I feel so sorry for him. He was obviously in lots of pain and was finding it difficult to feed and sleep but as soon as it popped the crying stopped. The discharge was much more bloody this time and the dr couldn't really get a good look as there was too much pus in there. If it happens again Joe will be referred to an ENT specialist who will investigate things a bit more thoroughly.
Today was the babies follow-up with the pediatricians to assess how they are doing generally. They were so, so good, especially Joe who was uncomfortable with his ears and has a cold. They were both smiley and happy and showed everyone how wonderful twins are. They were a real credit. It was especially nice as it was one of the nurses from NICU doing the clinic, not one of my favourites, but it was lovely to be able to show how well they have done.
The doctor seemed very pleased with how happy and content the babies are but confirmed our suspicions that all is not perfect with Harry. There is some degree of hypertonia which is high muscle tone which basically means that he is very stiff and doesn't bend his torso easily. We noticed this almost as soon as we were discharged from the hospital and I may even have mentioned it on here before. Positive signs are that he doesn't keep his fists clenched all the time and is able to get his hands to his mouth. He and Joe will both he assessed fully in a couple of weeks by the Child Development Team who will give us exercises and advice on the best way to get him moving. Harry also is being referred for a hip scan as he was breech when he was born. The dr thought he felt his left hip clicking a bit so just wants it checked out.
A referral to the dietician was talked about but I want to hold off on that for a while to see if practice will help him improve his eating. At the moment he is unable to move food from the front of his mouth to the back so he can swallow it and instead he just lets it all dribble out of his mouth which makes for lots of mess and frustration.
Joe is doing okay, although very obviously delayed. He is also able to get his hands in his mouth and likes to suck on his thumb now but is not even close to being able to roll over.
The children go back to school on Wednesday so hopefully our life will get back into some kind of routine.
Currently our main issues are with ears. In my last update, Joe's right eardrum has perforated. A couple of weeks later, on the same day both Joe and Harry's left ears perforated so were once again on antibiotics, and after a horrible night with Joe last night, his left eardrum has perforated again today and he is back on medicine to treat it.
I feel so sorry for him. He was obviously in lots of pain and was finding it difficult to feed and sleep but as soon as it popped the crying stopped. The discharge was much more bloody this time and the dr couldn't really get a good look as there was too much pus in there. If it happens again Joe will be referred to an ENT specialist who will investigate things a bit more thoroughly.
Today was the babies follow-up with the pediatricians to assess how they are doing generally. They were so, so good, especially Joe who was uncomfortable with his ears and has a cold. They were both smiley and happy and showed everyone how wonderful twins are. They were a real credit. It was especially nice as it was one of the nurses from NICU doing the clinic, not one of my favourites, but it was lovely to be able to show how well they have done.
The doctor seemed very pleased with how happy and content the babies are but confirmed our suspicions that all is not perfect with Harry. There is some degree of hypertonia which is high muscle tone which basically means that he is very stiff and doesn't bend his torso easily. We noticed this almost as soon as we were discharged from the hospital and I may even have mentioned it on here before. Positive signs are that he doesn't keep his fists clenched all the time and is able to get his hands to his mouth. He and Joe will both he assessed fully in a couple of weeks by the Child Development Team who will give us exercises and advice on the best way to get him moving. Harry also is being referred for a hip scan as he was breech when he was born. The dr thought he felt his left hip clicking a bit so just wants it checked out.
A referral to the dietician was talked about but I want to hold off on that for a while to see if practice will help him improve his eating. At the moment he is unable to move food from the front of his mouth to the back so he can swallow it and instead he just lets it all dribble out of his mouth which makes for lots of mess and frustration.
Joe is doing okay, although very obviously delayed. He is also able to get his hands in his mouth and likes to suck on his thumb now but is not even close to being able to roll over.
The children go back to school on Wednesday so hopefully our life will get back into some kind of routine.
Wednesday 25 August 2010
Monday 2 August 2010
Joe's first readmission
I was aiming to get through the rest of the year without a re-admissions to hospital. Alas, Joe let the side down on Friday after having a perforated eardrum so we were admitted overnight so they could monitor him.
Amazingly he was absolutely fine - no pain, no fever, no excessive crying etc. Typically we were 3 hours away from home, visiting our friends Karen and Chris who also have twins, when I first noticed something was wrong. I took him out of his carseat and he had yucky green pus coming from his ear. I wasn't too concerned as he was so happy and smiley and just thought he maybe had a bit of an ear infection and I'd stop off at the hospital on the way home and get his some antibiotics to clear it up.
David rang the hospital to let them know I'd be going down in a couple of hours. They scared me by saying a pussy ear could be very dangerous in such a small baby and the infection could quickly spread around his body making him very sick and posioning his blood! To add to my panic the three hour journey turned into nearly 5 hours due to an accident.
Upon arrival at the hospital we were given our own room and told to make ourselves comfortable. The dr who initially assessed Joe thought that the chances were that he'd need IV antibiotics to prevent the infection spreading and therefore a few days stay in hospital. Luckily the senior dr on duty is an ENT specialist and decided that as long as he remained clinically stable overnight, without spiking a temperature then oral antibiotics would be okay as a preventative measure, but in actual fact, because the eardrum had perforated and was draining then he'd probably be fine without any intervention at all.
Everyone was amazed that he wasn't in, and hadn't been in any extreme pain. We were discharged on Saturday afternoon and has been his usual cheery self throughout it all. I wish I was as cheery when I got back to the car and found a £70 parking ticket for my troubles. After a night in a chair with no sleep, nothing to eat or drink in nearly a day and missing out on an afternoon planned with our friends Gaby and Dai and their little treasure William, it just about rounded the day off nicely.
Wednesday 28 July 2010
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