Update

A quick update.

Joe has now joined Harry in the nursery so they are next to each other again. The cpap seems to have gone forever. Both babies have had domperidone and gaviscon added to the drugs they take to help them with reflux. They are both desatting frequently, often down to 50/60% and sometimes lower but usually manage to get back to normal without help, occasionally needing a little extra facial oxygen wafted over them.

Joe had a nasty desat/bradycardia yesterday afternoon. His sats dropped right down and he went very blue and took a while to recover. I'm not usually phased by either baby turning funny colours but he really did look almost dead and it was quite scary. The doctors came to see him as he was working very hard with his breathing and took bloods to check for infection but all came back clear. His fluids have been restricted slightly but it doesn't seem to have made much difference.

Now that I am used to Poole's way of doing things I am missing Portsmouth less. I am much more involved with care and feeding in Poole which is nice but has it's drawbacks as yesterday afternoon I popped out for a couple of hours (with Karen, whose twins were in poole for ten weeks two years ago) and when I returned no-one had fed the babies!

I thought that the move to Poole would mean I am home more but I actually spend more time than ever at the hospital. I get there just after 9 in the morning and don't leave til nine in the evening. I feel that I need to be there all the time as I know the babies better than anyone there.

On Wednesday Granny Tibbles is coming to visit.

Pics, 12 weeks 3 days

David and Joe

Ben and Joe

Ahh, brotherly love. Long may it last!

Ben and Harry

The transition from Portsmouth to Poole went smoothly for the babies. Joe arrived first, and Harry a few hours later. They both slept for the whole journey and haven't shown any signs that they even notice they are somewhere new. It's me who is struggling with the change.

Things in Poole are very different. The first thing that happened was Joe was taken off his cpap on arrival and hasn't been put back on it. In Poole they don't have a rigid cpap regime for weaning them off it gradually, if the baby is coping they leave it off, and Joe is coping so it was goodbye cpap, hello nasal prongs. I can't say I was particularly thrilled, after he'd been doing so well I was worried it would make him work too hard and he'd get tired but he seems to have done okay and last night moved out of intensive care and into the nursery with Harry. Yesterday Joe also tried a bottle properly and finished off his whole feed, and in the evening he was moved to three hourly feeds. None of these things would have happened so quickly in Portsmouth.

Harry is okay, still desturating a lot but not needing any intervention. He is still on two hourly feeds.

I am cutting this short as there is a war breaking out in my front room over Special K. Nothing changes..!

Poole!!!

Instead of leaving at 8.30 for the hospital as planned this morning, I popped to Next to buy some (more) baby clothes. I'm glad I did because when I got home David had had a phone call to say the boys are on their way home to Poole hospital today. I am so excited and nervous. I never have to do the drive to Portsmouth again. I never have to sit in traffic again for hours because of an accident on the motorway. I never have to worry that I'll have a problem with my car and not get there. I never have to worry about being an hour away if one of the babies gets poorly. I can't wait til they get here and I can see them settling into their new home.

Making progress

Both boys have made steps forward today. Joe has graduated from an incubator into an open topped, heated cot and has gone to 5 hours off cpap and 3 hours on. This is a huge jump all in one go, as he was doing 2 off, 6 on but he coped fantastically. He also had his first go with a bottle, just to give him taste of milk and he loved it.

Yesterday Harry moved from 2 hourly feeds to three hourly but today they have been changed back to two hourly as the doctors think he has a bit of reflux. This is really common in premature babies and in simple terms is just like heartburn that adults get. He is now getting medication so it should be better in a couple of days. He tried a bottle again today and managed the whole feed, so tomorrow he will hopefully be having two bottles. This morning he was moved from his heated cot, to a normal, unheated one.

Poole hospital is still full so no news on when we will be transferring.

New weights: Harry - 3lbs 15oz and Joe 3lbs 9.5oz

Joe, first cuddle without the cpap on

Joe-bo

Joe in his open cot

and finally the ginger ninja, Harry.

Harry and his dummy

Harry

Two steps forward, one step back.

Joe, off cpap

Just as I was beginning to see an end in sight we've had a little set-back with Harry. We think he has caught his first cold. Yesterday it was looking likely that he'd be back in intensive care on cpap and they were just making a space available for him when I arrived at the hospital. Thankfully his blood gas was good so he is still in Special Care for now. His sats are dropping very low, to around 14-15% quite regularly but at the moment he is managing to recover each time himself. He was due to bottle feed twice yesterday but that has been put on hold for now, and his three hourly feeds have dropped back down to every two hours. His feeding tube which was in his nose is now in his mouth to make it easier for him to breathe through his nose. He is also on the brink of needing a blood transfusion again but they are trying to hold off on this to see if he can get better on his own.

I didn't get to spend much time with Joe yesterday because I didn't feel able to leave Harry in case the nurses didn't spot him not breathing. I know this probably sounds ridiculous to most people who haven't had a baby in NICU, and I have no choice than to trust he is looked after properly when I am not there, but sometimes the nurses ignore the beeping of the monitors for too long in my opinion.

Joe is now doing two hours off his cpap in every 12 hours (or it may be every 10 hours, I forget) and is doing well. He looks so big to be in there now, in an incubator and on cpap. There are babies there much smaller than him breathing all alone so he looks a bit of fraud. He is actually big enough for an open cot now but I'm not mentioning that as I was him protected in his greenhouse for as long as possible.

We have had a slight hitch with regards to my new pushchair. It arrived yesterday while I was being a bit of a drama queen and I am very embarrassed to say I returned it to Mothercare for a refund. Obviously now that everything is back in perspective it was a slight over-reaction on my part, but hey, there's a silver lining to every cloud and I get the thrill of ordering it again :)

11 weeks

Today the babies are eleven weeks old and both reached milestones in their own ways. Joe is now up to one hour off his cpap in every eight hours so he is managing a total of 3 hours a day. He came out for a lovely cuddle this afternoon and had a nice, settled day. He needs a fair amount of oxygen when he is off cpap but we expected he would. I'm hoping that as he is gestationally quite old now that they will move a bit faster with weaning him off the cpap than they did with Harry.

Harry's feeds have increased from two hourly to three hourly and today he had his first bottle! He finished the whole feed (26mls!!) and managed a little burp afterwards. It took him a while to get used to it and his sats kept dropping but he got their in the end. Tomorrow he is going up to two bottles, one morning and one evening. I'm hoping that he will be ready to come home in three weeks.

New weights are: Harry - 3lbs 13oz and Joe is 3lbs 5oz. Both growing so fast and have already outgrown their first sets of clothes.

Special Care!

I did my usual routine today of checking the names of the babies in intensive care on the board outside the door and Harry's name was missing, which could mean only one thing - he's been down-graded to Special Care! He came off his cpap yesterday afternoon and this morning they needed his space in intensive care for a sicker baby so he was moved. There is every chance he could tire and need cpap again, but fingers crossed and we will cross that bridge if it happens.

Special Care is so different. It's quieter, only one nurse to four babies and it has a much more relaxed atmosphere. I, of course, spent most of the day trotting up and down the corridor between babies but hey-ho, it's not like I can't do with the exercise.

Both babies had their eyes examined again today and the opthalmologist has said Joe and Harry are both fine and so we are free to be transferred back to Poole. So as soon as Poole have the spaces available we will be on our way home. I'm not looking forward to getting used to a whole new set of routines, new doctors, new nurses etc. but I will be so happy not to be driving to Portsmouth and back every day.

Joe managed an hour off his cpap today and will now be doing one hour off in every twelve. He looked like he was working quite hard but his blood gas was good so he came out for a lovely long cuddle once he was back on his cpap. I remember holding him once while he was on the ventilator, and once very briefly while he was on the Bubble cpap so today was really nice for both of us.

Last night the babies were reunited for the first time since birth. One of the nurses put Harry into Joe's incubator for a little while. I wish I'd been there to see it, but she took a picture which I will scan in tomorrow and put on here.

Harry

Joe

Rubber-dub-dub....

....Harry's in the tub! Apologies for the quality of the pics.

After nearly eleven long weeks harry has had his first proper bath. He so badly needed it too. Joe also could do with a proper bath but he doesn't smell nearly as much as Harry did. Poor Harry had an aroma that could rival his teenage brother's...and trust me, twasn't pleasant.

Harry has now progressed to eight hours off cpap and two hours on. There is some confusion as to whether he is now completely off it as David rang for an update just now and lost track of what the nurse was saying but if he isn't off it completely, he will be tomorrow. Then Special Care the day after.

Joe reached a milestone today too, he managed a whole half-hour off his cpap without an issue. Either tonight or tomorrow he will go up to being allowed an hour off and hopefully it won't be long before he is catching up with his brother. He looks so different without his hat on. He and Harry are really very similar and both have the strawberry blonde (not ginger!!!!!!!) hair, although Joe's isn't quite as long and fluffy as Harry's.

Not being in an incubator makes such a difference. Harry suddenly seems like a real baby, and more my baby. Now I feel able to pick him up without asking permission and take charge of him a bit more. I know Joe isn't aware of much but I am trying to be very careful and spend equal amounts of time with each. It would be very easy to focus more time and attention on Harry because he's so much easier to interact with now.

I am so excited to be thinking of them coming home. I just cannot wait to sit and hold my babies all day long. I left the hospital early today so we could go pushchair shopping so we now have a single pram on order in preparation for Harry coming home first. For anyone half as interested in pushchairs as me we went for the Bugaboo Cameleon. As we have twins we get a 10% discount in Mothercare so it would have been rude not to use it :) I'm almost as excited about my new pram arriving as I am getting my babies home! Twins, three double pushchairs, and now a new Bugaboo - could life get any better? :)

10.5 weeks

Joe, on his new cpap

Harry in his open cot

Sleepy Harry

Goodbye Mr Incubator

At last night's weigh-in Harry topped the 1.5kg milestone which means he is big enough to be in an open cot. This afternoon he made the big move, and he looks so tiny and exposed in it. I was really excited until I saw him in it and now I wish he was back all snuggled up in his incubator away from all the noise of NICU. Oh well.

More good news is that Harry will probably only be in intensive care for another few days as he is managing 6 hours off his cpap in a row now, and only two hours back on it. Once he manages 24 hours off, he will be moved into Special Care which is much quieter and each room only has four babies in it. His next lesson will be learning to feed from a bottle and once he has that mastered he will be home!! I can't wait.

Harry now comes out for cuddles every day and he loves it. Today was our record so far and he was out for two hours snuggling into me. He was so tolerant of me picking bits of dry skin out of his hair, bless him. I cannot wait to be able to bath him, he needs a proper wash now after all this time.

Joe is also doing okay. He was changed from Bubble cpap back to the conventional sort today and is doing fantastically well. I am so glad they changed him back as the prongs that go up his nose were making it bleed and sore and he cried every time he moved his head as the prongs would become dislodged and hurt him. The doctor expected him to need more oxygen as the pressure going into his lungs is now lower, but he has surprised us all and has been on around 26% oxygen all day. His infection levels are slightly raised but this often happens after vaccinations and he appears well so for now he is avoiding antibiotics and they are monitoring him. Yesterday he had another blood transfusion so he is nice and pink now. I have lost count but each baby must be approaching a dozen transfusions each by now.

Joe doesn't come out for cuddles properly yet as it was so uncomfortable for him while on the Bubble cpap. I'll let him settle down for a day or two and hopefully he can start coming out too.

The new weights are: Harry, 3lbs 8oz and Joe 3lbs 1oz.

Pics coming up.

10 weeks

Both babies had their first vaccinations today so I've been told to expect them to be a bit unsettled for the next day or two. Fingers crossed they will be okay. I was dreading having them done as they have been through so many pokes with needles I didn't want them to have anything done that isn't 100% necessary but the doctors convinced me they really do need them so it was done this afternoon. It wasn't actually as bad as I was expecting. They gave the babies a sugar solution first which is supposed to help with the pain and they hardly cried at all. They were both fast asleep again minutes later and seemed perfectly settled when I left.

A new baby came in overnight, born at 23 weeks and 6 days. She weighs the same as Harry weighed at birth and she looks so fragile and tiny. It's only been 10 weeks since Joe and Harry were born, but I have already forgotten what those first weeks were like. Or maybe I just don't want to remember.

Top picture is Joe, the rest are Harry.

The doctors yesterday decided that as Joe's infection is better that it's time he had a trial at coming off of his cpap. As seems to be usual, I waited around all day in anticipation of the big event, only for the nurses to not get around to doing it. When we called in this morning to hear how the babies did overnight, we were told that Joe's night nurse has taken him off but he only managed 15 minutes before needing to go back on. Apparently he needed too much oxygen and just got too tired.

Harry is managing his four hours off cpap in every twelve. No other changes with him really. He came out for a cuddle today but he wasn't really very happy and had a few desats and bradys so I put him back to bed.

Both babies had their eyes tested again today for ROP, luckily both are absolutely perfect.

The doctors are going to try and get the babies back to Poole hospital by the end of the month. They could go now if necessary but the doctors want to wait until the risk of needing laser surgery on their eyes has passed. Poole aren't equipped to do the surgery there which would mean a transfer back to Portsmouth or Southampton and both boys are still high risk for ROP for a little while longer yet.

I was a bit down this morning as progress seems to be so slow, but the doctor who did the round reminded me how far Joe and Harry have come so far. He said their progress is nothing short of miraculous and I should be very pleased and proud. He thinks there is a very good chance that Harry will be able to be home by the end of next month, with Joe being ready not long after. He said it's very likely that Harry will be home before Joe as there is such a big difference in how they are doing, which is another reason why being in Poole hospital will be better. Travelling to Portsmouth every day with one baby to visit the other wouldn't be very practical.

I suppose if Harry is going to be coming home first we will need a single pram for a little while and there's nothing I like more than buying a new pram. Ebay here I come......!

Harry

Joe

05/04/10

No pictures today I'm afraid as I haven't got the energy to sort them out, but both babies are doing well. Harry is still having three hours off his cpap and nine hours on, and is now being fed two-hourly. No other changes with him.

Joe's x-rays last week showed he has/had a chest infection but he is doing much better now. He is still on antibiotics, but his infection levels are down and his oxygen requirements are now below 30% again which is good. He has also changed to being fed two-hourly and is tolerating it well.

New weights are as follows: Harry is 1.37kg, which is a smidge over 3lbs! and Joe is 1.2kg which is about 2lbs10oz. The next milestone for Harry is 1.5kg, which is when he will be able to switch from being in an incubator to an open cot.

9 weeks and a day old

Joe

Harry, modelling a babygrow from Gaby. Thanks Gaby :)

Harry is doing well and is up up three hours off his cpap in every twelve hours. The doctors have started him of diuretics and this evening he is having a blood transfusion but is otherwise well. He came out for a lovely cuddle today which he enjoyed.

Joe is a bit poorly, his infection levels are raised, his colour isn't great and his oxygen levels have been increasing. He has been started on two different antibiotics so hopefully he will be fighting fit again soon. He is struggling a bit with his cpap and getting very cross with it. The nasal prongs keep going too far into his nostrils which makes his nose get sore and start to bleed but the doctors are reluctant to change to conventional cpap as it doesn't offer the pressures he needs and may set him back.

Tomorrow I am going to ask if Harry can be moved to being fed two-hourly instead of hourly. That will be another step closer to being ready for home.

weights

I forgot to updatethe last post with the babies new weights.

Joe is now 2lbs 6oz and Harry is 2lbs 13oz. Joe's head cirumferance has increased from 19.7cm at 8 days old, to 27.7cm yesterday.

8.5 weeks

Joe

Joe again

The babies are now 8.5 weeks and progress is slow so not much to update. Harry is still having time off his cpap and is coping well and Joe should be starting to have time off by the end of the week. Nothing dramatic has happened, no infections, no brain bleeds, eye exams normal and for that we are incredibly grateful. I keep being reminded that this doesn't guarantee 'normal' babies but I am happy and confident that all will be okay.

Both babies have folders in the drawers next to their incubators which contain all the doctors notes and reports. On the front is a big notice which states that the file is intended for drs and nurses use only and parents are NOT to look in it. Well this seemed like an invitation to me so on Sunday I waited until the nurse was out of sight and took it out of the drawer to look. I was happily rooting through it when that pesky nurse pounced on me. She almost wrestled me to the floor to get that folder off me and told me I was NOT to look in it. Hmmm. So yesterday I doubled my efforts, waited until teh nurse was busy over the other side of the room and covertly flicked through to see what was so top-secret. Alas nothing of great interest was in there, but I did notice that each day the nurse comments in her 'round-up' about me, and whether I have changed nappies etc. There is also a chart that is filled in each day which notes which parents have vistited, who else has visited, and how many times we have rang in. It was interesting to see that one of the notes in Joe's chart was that grandad has visited. Unless grandads Tibbles or Evans have snuck in undercover I can only assume that the nurse mistook David's brother for grandad, sorry Stevie.

Being sent back to Poole is now being mentioned more and more often. I am not keen at all. We are all so settled in Portsmouth and know all the routines and nurses. The drs have said they won't send us back unless they are 100% sure it is safe and the soonest this will happen is when the babies are both cycling 4 hours on cpap and 4 hours off. We are so close to that now and can see it happening within 2-3 weeks. Apparently my local health authority have to pay Portsmouth to look after us and once the babies are stable they can't justify keeping us there. I'm hoping if I keep my head down and don't mention 'home' then they will forget we are there :)

Dungarees and dimples

Harry has a cute little dimple in his chin. I've never seen it before as he always has his feeding tube taped to it.

Joe (top) and Harry wearing matching blue stripey dungarees.

Off cpap

Harry, with no mask or hat. Let's hope he grows into those ears!

8 weeks old

Harry, dressed for the first time

Little Joe

Joe and Harry have reached eight weeks old, and tomorrow will be the equivalent of 32 weeks gestation.

Both babies are doing fantastically well. Harry is now spending one hour in every eight completely off his cpap, with only oxygen prongs to help him breathe. This is a huge step and once he manages 24 hours off in one go he will no longer be an Intensive Care baby and will be moved down to Special Care, where he will learn to feed.

Joe is doing well on cpap, but isn't yet quite ready to spend time off. His oxygen requirements are low, nearly always below 30% and he continues to amaze the doctors with his progress. It was only a week ago that he was still ventilated so he has come a long way. He has developed a hernia near his right testicle and the surgeon has seen him and will be keeping an eye on it. Hernias are very common in premature babies and it's only a very minor surgery to fix it, most babies are back to normal within a day or two of having it repaired.

When the babies were weighed on Wednesday, Joe was 975 grams, or 2lb 4oz and Harry is 1215 grams, or 2lbs 10oz.

Sadly I have to report that the twin next to Joe died in the early hours of Wednesday morning. She fought a hard battle for five long weeks but in the end her little lungs just weren't strong enough to cope.

fat baby Harry

Harry has so much fluid retention he looks like a little sumo wrestler. Finally the drs and nurses are agreeing with me that he isn't just growing fatter and this isn't normal. I hate to say 'I told you so', but....He has gained 6.5 ounces since Wednesday and is now 1156 grams which is just under 2lbs 9oz. He must be so uncomfortable, even his little toes are swollen. He had a blood transfusion yesterday evening but is otherwise doing well and we are approaching the time where is going to spend time off his cpap, breathing all on his own.

Here is Joe, when he first went onto cpap on Thursday evening. He initially did very well but struggled more and more each day and on Sunday we were anticipating him needing to be put back on the ventilator. The drs were keen to avoid this so tried him first on a different type of cpap called 'Bubble Cpap'. It does the same job as the normal cpap but provides greater pressures into his lungs which seems to agree with him as he has dropped from 70% oxygen down to around 30%.

Quick update 22 March

Just a quick update on how things are going. Sarah's staying at the hospital for a few days as there is a room available. Both boys have really blossomed in the past few days and are now both coping well and are both off their ventilators and on c-pap. I've not been in to see them recently as I fell victim to a sickness bug last week which has now moved on to Jack.

I think Sarah is back later today or tomorrow so hopefully she will update things in more detail soon and have some pictures of Joe off his ventilator.

Finally, Sarah has told me that one of the twins who came in to the unit just after our boys has been really struggling over the past few days and her parents have been warned about her prospects so we all really hope that she pulls through....it's a strange environment in the unit with everyone going through the same emotions so it affects all the parents when things aren't going well with one of the little ones....please keep your fingers crossed for their little girl.

2lb baby x 2

Harry















Joe

After starting off at barely over a pound, both babies have topped the 2lb mark. Joe is 916 grams which is exactly 2lbs and Harry is 970 grams which is 2lbs 1.5oz. Porky little men!

Joe is doing much better. He is back on insulin as the steroids have increased his blood sugar levels and he is having a blood transfusion today to make sure he is in tip-top condition for when they next try him off the ventilator - that could be as soon as today if his blood gases show he is coping well.

Harry is doing well, but has been started on two anti-biotics as his blood is showing a possible infection brewing. He isn't acting like he has anything wrong with him, it's just a precaution to treat him before anything takes hold properly.

Pics

Harry. First cuddle, and afterwards.

Catching up

I haven't blogged for a couple of days so this is a bit of a catch-up with what's been happening.

After the Drs round on Monday morning Joe was considered ready to come off his ventilator and onto cpap. Yay! During the day another baby came in, so despite me hanging around and being on tenterhooks all day waiting for the big moment, it didn't happen in the end until after I had left in the evening. Unfortunately he really struggled and only last for seven hours before needing his vent tube replaced again.

Yesterday his ventilator settings were quite high while he recovered and he had quite a few apneas and bradycardias, where he stopped breathing and his heart rate slowed. The doctors decided he needed a new tube placed, so they tried him again on cpap as the tube was being removed anyway and they hoped he'd tolerate it better second time round. He didn't cope well but due to the frequent tube changes and long duration of being ventilated so far, his windpipe has swollen so they had to put a smaller tube down. The drs explained that this doesn't ventilate him as well as a bigger tube, so he is now on steroids again to hopefully reduce the swelling and either try him again on cpap, or more likely enable them to place a larger sized tube.

Today he had a few episodes of desaturating and not breathing but his nurse has been watching him carefully. He has been on minimal handling so he has been allowed to rest as much as possible. In the two hours since I left he hasn't had any more episodes which is reassuring so fingers crossed he'll be getting better soon.

Harry is still on his cpap, so its three days and counting! He is being such a star, and seems to be coping really well. He is now laying on a gel pillow to help his head shape, as both babies now have classic premature baby head shapes. Where they spend a lot of time either on their sides of laying on their tummy they are looking quite flat-headed so the gel pillow helps to support them. Joe can't have a pillow yet until he is off his ventilator.

Today Harry had his first eye exam to check for ROP (Retinopathy Of Prematurity). This is a disease that ocurs in some premature babies caused by the growth of abnormal blood vessels which can lead to blindness if left untreated. I've been quite worried about this test as I knew it was looming and have heard how awful and traumatic it is for the baby to go through. I was present while he had it done and I have to say it was nowhere near as bad as I was expecting. The dr used numbing drops and tiny little clamps to hold his eyes open and it was all over in the blink of an eye (ha ha!) Harry's eyes show nothing yet to be concerned about, but he will be rechecked every week or two weeks until he is discharged. Joe was too unstable today to have his eyes looked at.

Yesterday I had my first proper cuddle with Harry. A pic is coming up, as soon as I have downloaded it. He tolerated it really well after a bit of a shaky start.

Harry's morphine has now been stopped completely, as were his diuretics. I think he is starting to look a bit puffy again but the drs insist he is just growing and looking fatter. I'm his mum and I know him, so we shall see in a day or two if I am right. (Which I will be.)

The babies had another visitor today. Uncle Stevie came to see them and agrees they are tiny, perfect little people. It was lovely to see you, thank you for coming.

I have an adorable video of Harry hiccupping which I want to put on here but I can't remember how to get it off my phone. He is so cute and so LOUD that everyone could hear him. I'll keep working on how to do it.

Harry is back off his ventilator and coping better with the change today. He'd managed seven hours by the time I left and his blood gases were excellent. He wasn't impressed though, and was very irritable, thrashing around and crying and generally acting very cross. He managed to lift and turn his head completely over at one point which is no mean feat when you weigh less than two pounds and have something large and plastic attached to your nostrils.

The nurse recommended he try a dummy to help settle him, as seen in the picture above. This is a dummy especially for tiny babies so you can imagine how small Harry's head still is. There are lots of benefits to premature babies having a dummy apparently.