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

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.

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.

Thursday, 9 December 2010

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Harry, just out of the bath so proper curly hair.
From Sarah, using BlackBerry® from Orange

Saturday, 27 November 2010

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Joe and Harry waiting for snow
From Sarah, using BlackBerry® from Orange

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.

Monday, 11 October 2010

Harry

Harry playing Piano Virtuoso on the iPad. How cute is he?
video

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.

Friday, 17 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.

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, 21 July 2010

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From Sarah, using BlackBerry® from Orange

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From Sarah, using BlackBerry® from Orange

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From Sarah, using BlackBerry® from Orange

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From Sarah, using BlackBerry® from Orange

Can't think of a witty title, sorry

Harry is now back to his usual self and fighting fit. He still sounds a little wheezy now and again but is eating normally and is happy and smiley.

Today I took both babies to the baby clinic to be weighed. The good news is that they are bothing gaining weight nicely and are just under 11 lbs. The bad news is that I didn't really appreciate until today just how delayed Joe and Harry are. Seeing other babies who are reaching their milestones normally, and who move normally brought it home just how far behind they are. I know I shouldn't compare. I know my babies have come a long way. I just wish that everything in life wasn't such a struggle for them. Other babies much younger than them were sucking on their hands, and lifting their legs and feet in the air and trying to roll. My babies, although they move all their limbs, for the most part just lay still and gaze around. I'm hoping that they are just chilled out but secretly think there is a bigger issue there that will need to be addressed soon.

Next week we are supposed to be starting weaning as they will be six months. For most things, we use their adjusted age, which is nine weeks, but we are supposed to begin solids at six months actual age, in line with other babies born at term. There is just no way they are ready. They can't support their bodies yet and can only hold their heads up reliably for a minute or so at a time. There is probably a good reason why they should be started sooner rather than later but it just seems wrong to me to force food into their mouths when their bodies are telling me they aren't ready yet. I'm thinking weaning at six months has something to do with preventing an oral aversion to food and textures if it is done any later, or maybe it's something to do with the body's iron stores being depleted by six months, but I have asked the Health Visitor to query with a dietician the best way to approach it. At the end of the day, I just want to do what is best for the little people even if it goes against my natural instincts.

Today the babies went into cloth nappies for the first time. I've been umming and awwing over whether or not I could be bothered with the extra work, but a great deal came up on Ebay that I couldn't refuse. They arrived today and mmmmmm, they smell so good and feel so soft! The initial expense is immense but so long as I persevere (famous last words - I'm not known for my endurance!) it will be worth it. Cute pics of fluffy nappies (and babies) coming up later.

Wednesday, 14 July 2010

Poor, sick Harry

Harry is dealing with his first proper illness since coming home. Last week both babies came down with a cold that is doing the rounds in the family, but they had been generally good-humoured and happy, just a bit snotty. Harry sounded wheezy now and again so I had both babies checked at the doctors who confirmed that they were both okay, and it was just a minor cold.

At about 2am this morning Harry woke up crying and didn't stop. He cried, and cried, and cried. These babies NEVER cry like that. He was refusing to feed, wouldn't sleep and sounded like he was in pain. We tried feeding, changing, the swing, singing, swaddling, a dummy and nothing seemed to do the trick and in absolute desperation I broke out the Calpol. This did the trick for a couple of hours but then the cycle continued this morning when he woke up. All I can say is thank goodness for the NHS and my GP surgery. So many people complain about not being able to see a GP when they need to but all I ever need to do is say I have an emergency and they fit us straight in. Today I rang them saw a dr and picked up a prescription for anti-biotics all within 30 minutes. Apparently Harry's right lung is very crackly and sounded infected so he has a week of antibiotics which will hopefully make him feel better soon.

Throughout today he seems to be a little more settled, and is feeding well, but his temperature has increased and he has a fever. If it gets any higher, or he stops feeding we have to go straight to the hospital.

It's time to feed the little chappies now but will keep you updated on how Harry is. Fingers crossed he turns a corner soon.

Saturday, 10 July 2010

A super quick update

The babies are stirring ready for a feed in ten minutes but just wanted to quickly update that all is well here.

I can't remember if I updated after their cardiac appointment but all was well and although they both have something very minor wrong with their hearts, it shouldn't affect them and they don't need to be seen for a year.

Harry had his repeat hearing test on Thursday - what a palava! He refused to sleep, then when he did sleep, Joe woke up, Harry vomitted every where in the middle of the test as the woman insisted I feed him to try and get him to sleep, despite me telling her he wasn't hungry. In the end she managed to test enough of one ear to determine that his hearing, although not perfect due to fluid in the middle ear, is adequate and he doesn't need to be reviewed again until next year.

Both babies are smiling properly now and Harry is even doing the odd coo and 'chatting' when the mood takes him.

Time to go...babies are telling me it's dinner time.

Saturday, 26 June 2010

Thursday, 24 June 2010

Goodbye Mr Oxygen

We have hopefully said goodbye to the oxygen. Joe hasn't needed at all for around a week now, not even when feeding or at night. The freedom of not being attached to the saturation monitor or lugging oxygen equipment around is wonderful. At first, I was so excited and happy to have the babies home that a bit of extra effort involved with the oxygen was a small price worth paying, but it quickly became an absolute pain and put me off going out anywhere. There is always a chance that they will take a step backwards when they get their first illnesses so the oxygen tanks will be left here for a while as a back-up if needed.

Both babies were seen at the hospital on Tuesday. I was expecting a big appointment with a consultant but we only saw a nurse who weighed the babies, said how great they are looking and sent us on our way. Joe is now 8lbs 5oz and Harry is 8lbs 14oz. I think there is a discrepancy in the scales somewhere as the end of last week there was only 2oz seperating them.

Harry has been taken off three of the drugs he was which is nice. Two diuretics and a sodium supplement have stopped. The drugs are another of those things I was a bit blase about at first. I thought it would be a small inconvenience but after a few days of doing it, it becomes a really big nuisance and is actually quite a big responsibility because of the dire consequences of getting it wrong. Harry is still taking ranitidine, domperidone gaviscon and sytron, and Joe is still taking domperidone, gaviscon and sytron.


On Monday we have our cardiologist appointment where I am expecting both babies to have heart scans to check the status of their murmors. I'm not anticipating any problems showing up but the actual appointment will probably be quite stressful, trying to keep both babies happy and settled is nearly impossible when I only have one pair of hands.

This week I have stumbled across a couple of other micro-premie blogs, of babies also born at 23/24 weeks. They really make me realise how incredibly lucky we have been so far, but also how far we still have to go. The chances that one or both babies has a degree of cerebral palsy is incredibly high and I am constantly looking for signs and trying to prepare myself for when/if they are diagnosed. The trouble is no-one has really told me what to look for, and we seem to have much less early intervention than the babies in, for example, America, who from the blogs I have read are followed much more intensively than we have been. I mentioned to the nurse who visited us this morning that Harry handles very stiffly - when you sit him up his hips, legs and back seem to go poker straight and it's very difficult to get him to sit in a natural 'baby' position for burping etc. She didn't seem concerned and said he probably is just 'windy'. I hope she's right and there isn't something I should be doing to help his muscles relax.

The babies continue to sleep all night, taking their last feed at around nine, give or take an hour, and sleeping through til around 6 when one baby starts stirring so I wake them both.

Monday, 21 June 2010

Testing sending a blog from my phone.
From Sarah, using BlackBerry® from Orange

Thursday, 17 June 2010

20 weeks, I think.

So today I think the babies are 20 weeks old. To be honest I have lost count since they came home, but they came out of hospital at 17 weeks old, and that was three weeks ago, so with my basic maths skills that makes a total of 20, right?

The hearing tests last week didn't go wonderfully well. Joe has good hearing in only his left ear, and a poor response in his right ear. Harry has a poor response in both ears. They aren't concerned about Joe as good hearing in one ear is adequate for him to be able to pick up speech, but Harry will be having his hearing re-tested in a couple of weeks time. The babies were absolute stars during the tests. It took forever, especially Harry's and they were both starving and fed up of being poked around by the end of it all but they hardly made a fuss at all.

They are both feeding and sleeping well still. They go around 8 hours at night, sometimes longer. Last night they had their last feed at 8, and I woke them this morning at 5 when I got up. They are just so fabulous and hardly ever cry.

We have bought Joe a pillow to help with his head shape from http://lillakuddisbabypillows.co.uk/. No idea if it works, but it can't do any harm to try and my instinct is that it's a waste of money but he looks cosy enough on it.

Both babies were weighed today and Joe is 8lbs 4oz and Harry is 8lb 6oz. At one point there was nearly a pound seperating them but Joe is catching up fast. They drink about the same amounts of milk as each other, but Harry is much, much sicker so I think that is why his weight gain is slower.

Today was our first experience of going along to a twins group. Wow! What can I say? If I was under any illusions of how easy toddler twins will be, I have since changed my mind. They were so full-on and active and boy-oh-boy they were a violent bunch. Pushing, hitting, and biting each other seemed par for the course for all the siblings there. My cute little boys will never be like that, will they? ;)

Wednesday, 9 June 2010

Millie and Joe


Millie holding Joe. More pics coming up this evening.

Settling in at home

The babies have been home for two whole weeks now. The time is flying by. Apologies for the lack of blog updates but at first I was undecided whether I should carry on updating (not sure how many people will read it now the babies are home) but have decided it's a nice way to record memories and pictures and will be nice for the twins to read when they are older.

Both Joe and Harry are such good babies. One advantage of NICU is that they send the babies home in a fabulous routine. At the moment they feed 3.5 - 4 hourly through the day and sleep for around 6 hours at night. In fact, last night they fed at 10.30pm, and I had to wake them this morning at 6 as we had a hospital appointment at 7. So far, all they really do is feed and sleep. We have had hardly an occassions where they have cried properly and no times as yet when they have been inconsolable or howled together at the same time.

On Monday we (me, Joe and Harry) went to a support group for premature babies. I was surprised there weren't more parents and children there, but it was nice that it was a small group and I met two other children who are now three and a half but were born at around 25/26 weeks, and they were absolutely lovely - running around and chatting and to the untrained eye completely average little boys. The group only meets once a month for an hour which is maybe why it isn't very popular. It isn't really frequent enough or long enough to form any sort of friendship with the other people there but we will go along again next month.

This morning Joe had his eyes tested for the final time for ROP. He has now been discharged and won't be seen again until he is a year old.

Joe came out of hospital with a feeding tube as he was getting quite tired sucking on his bottle sometimes in hospital, but I am pleased to say we only needed to use it three times in the first week and since then he pulled it out and hasn't needed it again. Both babies are now having 115ml per feed and tolerating it well, although we have had a few episodes of sickiness, especially in the carseats but that could be my driving that's upsetting them!

Tomorrow is a big day for the babies as they are having their proper hearing tests at the audiology clinic. I know they both have some degree of hearing because they startle at loud noises and respond to voices, I just hope that I am told tomorrow it is all normal.

Last week Joe weighed 7lbs 3oz and Harry was 7lbs 13oz.

It's so wonderful to have Joe and Harry home, as part of our family, properly. My heart tells me that they are going to be fine, I can just tell. They are beautiful, brave, amazing, little people and no matter what the future holds for them I will always be so proud of them for fighting so hard to stay with us.

Friday, 28 May 2010

Home!!

The babies are finally home! After 16 weeks and 6 days in hospital, we were released at lunch time on Wednesday. It feels so good to have them here, and we are already fitting into a nice routine.

I am exhausted but happier than ever :)
Me, Harry, Joe



Millie and Harry


Joe and Harry



Joe and Harry




Harry