Sunday, 28 February 2010

Plodding on..

Nothing exciting to report which is good. Both babies continue to be stable, with Joe needing more support than Harry.

Yesterday Joe's cannula in his hand stopped working which he needs for his insulin so the dr came to put a new one in. I was with Harry when she started, and by the time I got to Joe he was so sad and really crying so I held him by putting one hand on his body and the other on his head which settled him. She tried SIX times before she got one in that worked. I know it's necessary and there is no way to get round having to do it but each time she stuck the needle in him I'd feel his body flinch. I hate that they are experiencing so much pain and there is very little I can do to help them. They have morphine to keep them settled but there is no getting away from their discomfort sometimes.

Travelling in to the hospital every day is exhausting but the time passes so quickly once I am there. No sooner have I arrived, than it's time for me to leave again. Leaving them is still awful and I suspect will only get harder as they become more aware of what's happening. I'm still unsure whether to have them transferred back to Poole when they are bigger. It would be nice to have them closer, but it would mean a whole new set of nurses to get used to, a whole new set of germs they'd be exposed to etc. It's likely to be a long time before that happens anyway as they like the babies to be breathing with no mechanical support and we are a long way from that happening at the moment.

Friday, 26 February 2010

Things are still stable with both babies. They aren't really making much progress, but aren't having any set-backs either. The good news is that both are growing well and they are weighing in at 1lb 10oz each now. Joe's ventilator settings are gradually increasing which isn't great but the doctors are keeping an eye on him and have other options to try if needed.

On Wednesday I had my first proper out-of-the-incubator cuddle with Harry. They were changing his incubator for a clean one so I got to hold him on my lap while they did it. He was laying on his mattress, on my lap, but it was so lovely. He isn't generally keen on being handled but he coped really well and his oxygen levels stayed high so he obviously enjoyed it. He was awake for a lot of the time, looking up at me and I had to try really hard not to cry. I didn't want his first cuddle spoiled by me being an emotional wreck. The nurses took a picture of us which I will scan in and post in the next couple of days.

The other big news is that I have decided to try living back home full time and driving in to the hospital daily to see them. It's hard being away from the babies but I know they are in good hands and I have to try and get the balance right between being with them and still spending time with my other children. I've hardly seen them for the last month and feel like I am losing touch with day-to-day activities at home.

This weekend the babies will be a month old. I can't believe it, it has flown by.

Wednesday, 24 February 2010



one eye peeping open :)

Pics of Joe coming later...

Saturday was a lovely day with the babies, spoiled only by me getting a dose of mastitis. I was in total agony and can’t describe the pain, only to say that getting stabbed by a thousand knives couldn’t have been any worse. The midwife recommended expressing milk as the best way to clear the blockage causing the pain but just the thought of it was toe-curling and made me grit my teeth, and to physically attach a breast pump was impossible. Hot showers, massage and hand expressing seems to have done the trick for now…

On Saturday evening I was told I’d have to leave my room at the hospital as it was needed for another parent. I was totally devastated and burst into tears. After being so happy to have cuddled Joe, and being in such pain with the mastitis I think my emotions had run into over-drive and he thought of not being able to be near my babies was awful. When I went to say good-bye to them I burst into tears again. I felt like such a fool. My rational side was telling me that I am only an hour away and it would be lovely to see my other children and sleep in my own bed, but unfortunately my irrational side overtook somewhat.

I decided that I was going to stop expressing, that I hated the nurses, I hated this hospital, and I wanted the babies transferred home ASAP. I was quite irrational. Poor David couldn’t say the right thing. Thank goodness he has experience of me saying bizarre things after giving birth and knows I don’t really mean what I say.

I think the nurses took pity on my fragile emotional state because I am now back in Room 2 at the hospital. I can’t tell you how good it is to be back here knowing I can pop down the corridor and be with Joe and Harry in a minute.

To David: Sorry for acting like a crazy woman. That’s what happens when someone gets between a mummy and her babies. Thank you for putting up with my oddities. I love you.

Tuesday, 23 February 2010

Tuesday 23 February

Sorry there was no blog update yesterday but it was a disruptive couple of days as Sarah had to vacate her room at the hospital for another mum . There's been little change in the boys and they seem to have settled into a bit of a routine on their long long journey to full health. Both have had infections which have been treated successfully and they do appear to be growing quite well, although Harry's feeding has been stopped for a while to let his tummy sort itself out. The differences between the two are becoming quite noticable now as Joe is long and slim like his Dad and Harry is much shorter and rounder like his ....errmmm...well he's just shorter and rounder.
Hopefully Sarah will be able to update this later with all the technical stuff.

Sunday, 21 February 2010


I wrote this last night but couldn't get online to post it. Feeling too crappy to write any more today but both babies are fine.

"Today has been such a lovely day. Firstly because the babies and I had a visit from David, and secondly because they have both had a relatively stable, uneventful day. Joe in particular has looked really settled despite frequent blood tests to keep an eye on his sugar levels.

This evening I got to cuddle Joe which was just lovely. Not a proper cuddle, but the nurse dropped the door of his incubator, and his mattress slides all the way out so it sits just over my lap letting me put my arms right around him and lay my head next to his. It was an amazing time. He looked so tiny again being so close to him. I stroked his little ears, and forehead and under his chin, then just laid next to him, cuddling him, looking at him and smelling him. They are both just so deliciously gorgeous and I love them so much."

Saturday, 20 February 2010

Saturday 20 February

Sarah's not been able to connect to the Internet to update the blog for a couple of days so I am back in charge again and there's a fair bit to catch up on. Firstly, both boys are still feeding well and the Docs are very impressed with this - they say that the fact that they are feeding so well is really important because not being fed intravenously eliminates another potential source of infection. Having said that, both have small infections at the moment which are being dealt with. Joe was having another transfusion this morning and I think Harry was due to have the same later also Joe's eye is a bit runny still and a swab has now been done to check it out. Joe's salt and sugar levels are a bit wonky and they're being treated with medication.

We spoke to the consultant regarding the state of Joe's lungs and he left us in no doubt that they are extremely poor...his exact description was "pretty evil". He reckons that the only thing to do is wait for Joe to gradually grow and hope that the lungs improve with age. It is almost certain than Joe will be needing oxygen for many months and potentially years and it is likely that his lungs will never be 100%. He told us not to expect him to turn out to be at all athletic....having seen the state of the remainder of the brood this comes as no surprise. It was a bit of a shock though to be told that his chances of survival remain at only 50/50 even though he's been here for over 3 weeks now.

Sarah has been suffering with an extremely painful nipple (no tittering at the back of the classroom, please !) and when I left this aftrnoon she was waiting to hear from the midwife team at the hospital to see if there is anything that can be done. Hopefully it's not caused by an infection but having Googled in "nipples" I have scoured literally hundreds of websites but I was unable to find anything which may be causing the problem....but it was fun looking !!

Seriously, it will be awful if she has to stop expressing because the boys are feeding so well at the moment and the prospect of them having to change now can only be bad news.

Sarah's home tomorrow so hopefully she'll be able to update this in greater detail then.

Thursday, 18 February 2010

Harry is now on the oscillating ventilator due to him needing increased pressure on the other type he was on. He struggled at first but has settled down now. I don’t understand the settings on it, except the oxygen so don’t know how well he is doing ventilation wise now. I was so worried about seeing him on it, as I knew it makes baby’s body shake. The air is being pushed into Harry’s lungs at hundreds of tiny breaths a minute and it makes him vibrate slightly but it wasn’t as scary as I’d imagined.

Joe was also tried on the oscillator, however he didn’t tolerate it at all, and never recovered while he was on it so they switched him back. He is currently needing lots of support and his oxygen requirements are over 60% right now. I was even told not to touch or talk to him, to allow him to sleep and rest. I know it’s for the best but I had a little sulk anyway. There is so little I can do EXCEPT talk or touch him that without doing those things I can only sit and look at him.

Wednesday night was weigh-in night. Neither baby was stable enough for weighing last night due to the ventilator changes but Joe’s nurse weighed him this afternoon and he is now 647 grams.

I want to thank everyone who has sent emails. I promise to get round to replying to you all soon. I’m notoriously bad at replying to emails at the best of times so it’s nothing personal, I can only apologise.

Wednesday, 17 February 2010

bad news for Joe

I'm writing this on my Blackberry so hope it works.

The drs do their rounds every morning and evening starting at around 9am and 9pm and I always try and be present for them. I occassionally miss one due to them being very late or me having to express milk etc but on the whole I am in a good routine being there. Today's chat with the dr about joe didn't go so well. He has been taken off the steroids that were helping his lungs as he was suffering too many side effects, ie high blood sugars, high blood pressure (it was higher than mine at one point) and 'steroid rage' which is where the steroids make baby extremely irritable and they thrash around and become very unsettled. I think I mentioned yesterday how upset he seemed to me. The other news is that his lungs are very poor indeed and very, very damaged. I didn't ask too many questions as I'm not sure I am ready to hear the answers yet but we are facing a long road weaning him off the ventilator and as his lungs are so under developed it won't be any time soon.

I left the hospital at lunch time today as David and I had a meeting. I'll be leaving bright and early in the morning to get there for the drs round. As ever it has been lovely to see my family. Millie and I even managed tea and cake in the cafe at Tesco while David sorted out the shopping. The children seem to be coping ok with everything but it's still difficult not to feel guilty, especially this week while they are off school.

..Posting this now in case it doesn't work and I have wasted the last 20 minutes of my life typing it

Tuesday, 16 February 2010



Joe's greenhouse. Helping him grow healthy and strong.

So an update on the little people. Joe had an unsettled morning. He is off morphine now so is much more aware of what’s happening to him, and this morning he was crying when the nurses were doing things with him. He can’t make a noise when he cries because of the vent tube in his throat, but his little chin was wobbling and his face looked so sad, it was heartbreaking watching and not being able to help. His steroids have been reduced from three times a day to twice a day as his blood sugar levels are very high, despite being on insulin. His ventilator setting have also had to be increased today, but his oxygen has stayed below 40% which is good. He is having a blood transfusion this evening as he is looking a bit pale and on top of everything he has a sore bottom too :(

Harry is just being Harry. Ventilator settings are up and down but his oxygen requirements are minimal, I think they were only at 25% or so when I left him. If you look closely at the pictures I have posted of him from today you will see that there are no lines or drips going into him. He kept clonking himself on the head with the one in his hand so he must be extra relieved not to be giving himself a headache every time he tries to get comfy.

Both babies have stopped caffeine, which is a step backwards as it means that removal of ventilation isn’t imminent, but with their lungs being so tiny it’s not unexpected. A bit of a disappointment for me as I was looking forward to them progressing onto CPAP, not to mention that hopefully when that happens I will get my first cuddle. I can’t wait to be able to hold them.

Edited to add: Joe is now nice and pink from his blood. He also had another chest x-ray earlier so will probably get the results of that tomorrow on the ward round. Harry is the same, but his oxygen has gone up to 32%.

Chronic Lung Disease

Harry, making sure no-one removes his vent tube :)

We have been told that both babies will almost certainly have some degree of Chronic Lung Disease ( At the moment Joe's lungs are worse than Harry's and an official diagnosis can't be give until the babies are 39 weeks adjusted age. Although it's not the best news in the world it isn't as bad as it sounds. As the babies grow, and therefore their lungs get bigger their condition will improve as the area of the lungs that is damaged becomes relatively smaller comapred to teh healthy lung tissue that is growing.

It may mean that one or both babies will come home needing oxygen, which will be a bit of a pain but nothing we can't overcome.


Little Harry this morning

Messy Mum....

Messy Mum, aka MM, has left the building! I am so happy, she was driving me mad. As some of you will know, I am not a house-proud person but sharing the kitchen here at the hospital with her was worse than sharing with a group of teenage boys. Crumbs left on the work-tops, buttery knives left in the sink, splashes of tea dripped all over the floor, used mugs left in the sink etc etc. There is a big sign asking parents to please wash and dry up anything they use but apparently MM can't read, because guess who did her washing-up every day? Yup! Moi. There is a reason I have a dishwasher at home and it is because I detest washing-up, so MM, if you are reading this, I wish you all the best with your new baby but I am so pleased you have gone home and I don't ever have to scrub the coffee rings from your cups again, or go to have a shower only to find you have flooded the bathroom AGAIN, just like you do every day.

P.S. Your baby has the loudest cry I have ever heard. I look forward to a whole nights sleep tonight.

Update and pics of babies on the way.
Harry has had a bit of an eventful day today. This morning his sats were dropping to really low levels and the doctors were ready to re-intubate him again. They all got ready, got the trolley with all the equipment ready and Harry must have notice because he started behaving again luckily. I’m so pleased because placing a new tube is really traumatic - for him and me! His ventilation has been up and down but his oxygen requirement hasn’t been too high.

Sunday nights are weigh-in nights and Harry now weighs 573 grams. This is down slightly from his last weight but they said it’s common for such little babies to show a fluctuation as it’s quite difficult weigh accurately when they have hats on, and tubes and drips and things attached. Joe is up slightly to 609 grams. Only a 9 gram gain, but every little counts.

Another set of twins came in last night, born at 25 weeks and 4 days, so mine are no longer the youngest babies there. Here’s hoping they do as well as my babies have.

I'll try and take more pictures in the morning..

Sunday, 14 February 2010

14 Feb 2010

Sarah's back home again but really tired today so I'm back at the helm of HMS Blog. Now, she had given me a piece of paper with all the latest news on but that seems to have gone missing so it's all ad-lib from here.

From what I can remember I believe that Harry continues to take his feeds well and is being a real star. His ventilator tube had to be changed today as it was displaced but he's got over that problem without too much trouble. His sugar levels were a bit high (or was it low?) so he may need insulin to deal with that but apparently that's nothing too serious. He is also having supplements to help with his mineral levels.

Joe's had a quiet day and is doing well on his steroids and the docs are slowly reducing his ventilation now that he needs less oxygen - he can now also open both his they're both making progress in their own different ways.

Saturday, 13 February 2010

Missing home

My emotions have been all over the place today. Nothing to do with the babies, so don’t panic, I think I am just missing home and David and my other children, especially Millie. Especially little Millie. I know the boys are fine with their dad, and Millie is too, but I just feel she needs me more. I was feeling sad when I rang this morning, but instead of David cheering me up, I could hear Millie crying in the background (she had fallen over) and I just wanted to be with her so badly that I put the phone down and cried. It’s so hard feeling split between two places. I want to be at home with my family, but don’t want to leave my babies either. I think unless you have ever been through the NICU experience you can’t really appreciate how hard it is balancing life here, and Real Life. I certainly didn’t appreciate it until now, despite having previous experience with my surrogate babies.

David brought Millie in to visit today for the first time. She is always so pleased to see me and my heart just bursts seeing her. She runs up to me and hugs me so hard, and strokes me and tells me how much she loves me. Ahhh. She was so well behaved while meeting her new brothers and all the nurses told me how cute she is (which she is, of course). Saying goodbye was hard, I was worried she’d get upset, which in turn would upset me, but she (we) did well. No tears from either of us, unless she cried out of sight.

Both babies are stable, nothing much to report as everything is the same as yesterday. Harry’s oxygen levels have dropped to below 30% which is wonderful and Joe’s are up and down but no where near as high as a couple of days ago.

A good day

Jason came to see the babies today. I think he was surprised at how tiny they are. He found them rather uninteresting so I doubt he will be rushing back any time soon, but it was lovely to see him all the same.

Today David and I had a meeting with one of the consultants to get a progress update on the twins. Basically, we couldn’t have hoped to hear much better news. He said he still believes the babies to be closer to 23 weeks when they were born, than 24, but despite this they are both doing exceptionally well, particularly Harry. He said how rare is it for such early babies to tolerate feeds so well, and neither have had any major complications thus far associated with being so premature. He also stressed how that can still change and they have a long way to go yet, but even Joe’s nurse, who was in the meeting, told us afterwards how unusual it is for that consultant to be so positive.

So, updates on babies.
Joe: They decided today to begin Joe’s steroids. They are already doing the trick, and his oxygen is down from 70% to below 50%. He has them 8 hourly, and twice a day he also has Ranitidine as the steroids can irritate the stomach lining. His blood pressure his raised a little which is a side effect of the steroids, but they are monitoring it hourly. His weight is up to 600grams but another of the side effects of steroids is slow growth so he may not gain a whole lot while he is on them. Still no sign of his other eye opening any time soon. Brain scan this evening was normal.

Harry: Still our Steady Eddie. His ventilation is being slowly reduced and he is now on caffeine citrate, which I think it to help stimulate him to breathe more on his own. He had another blood transfusion this morning as he was anaemic. His colour is looking beautiful now, he really pinked up about half way through the transfusion. Harry’s weight is now 603 grams, so he is level pegging with his brother. His brain scan was also totally normal.

Both babies are now on 4.5ml of breast milk with added fortifier for extra calories and nutrients every hour.

I’m going to write about Joe’s nurse when I am less tired. She is honestly the most tactless, socially inept person I have ever come across. Just my luck that she cares for my baby several times a week.

Friday, 12 February 2010

2 weeks old

The babies have made it to two weeks old! It feels like such a milestone. If they can just make it another two weeks I will feel they are over the most critical time. 99% of the time I am so positive that all will be fine, but every now and then I panic about what might happen if they aren’t. I feel at my worst on the drive to the hospital after I have been home, I think being on the motorway reminds me of our first journey here where I was terrified they wouldn’t have made it through the night. That was such a horrible morning. We dropped the children off at my sister’s before we left and I couldn’t look at her. I knew that if I saw the sympathy in her eyes I’d start crying and never stop. Joe and Harry have done so, so well since that first weekend, especially my little Harribo who initially needed so much more support than his brother but has now over-taken him.

Today has been fairly unremarkable for them. Which is a Good, Good Thing. Harry is having his ventilation slowly weaned, while Joe is still on around 70-80% oxygen and 60 breaths per minute. Tomorrow Joe will be starting on a course of steroids to help the inflammation in his lungs, so fingers crossed they do the job and his support can be slowly reduced.

I held Harry today!! Not the traditional, lovely, newborn cuddle, just lifting him while his sheets were changed, but it felt so good and for someone who weighs only just over a pound, he felt surprisingly sturdy and tough. It was so good to cradle him in my hands and he fitted there perfectly.

I spent last night and this morning at home as David and I had to go and register the births, so they are now official little people known in full as Joe Oliver Tibbles and Harry Jacob Tibbles. Sorry about the surname boys, but that’s your dad’s fault ;) Get used to a lifetime of comments about cats and how cute being a ’Tibbles’ is :)

Tomorrow Jason is coming to visit us, so we are looking forward to that. I’ve told the babies to be on their best behaviour overnight. Or else!

Wednesday, 10 February 2010

A quiet day

Sarah's home today for a well earned rest and so it's down to me again to update the blog. Both boys have had a tiring day with lots of handling today and that seems to have had an effect on them both as they have flagged a bit this afternoon. Harry's ventilation has been up and down all day but he continues to take his milk well which can only be good news - he's now on his maximum feed of 3.5 ml per hour. The same applies to Joe who has settled a bit following the drama earlier in the week and he too is on 3.5 ml per hour. We're off to register the births tomorrow, which will be 2 weeks since their arrival - another great milestone!

Tuesday, 9 February 2010

Sibling Rivalry

Joe continues to be up and down on his oxygen requirements to stop him desatting.

Harry was obviously feeling left out as he has been having bradys and desatting today, and needed bagging to bring him back to normal. Basically he is repeating how Joe was yesterday, so they are putting a new ventilation tube down right now. It’s quite traumatic for parents to see so I’ve been sent off for a cup of tea and been told not to worry. Hmm, yeah right, if only it were that easy. Fingers crossed he bounces back and copes better with the procedure than Joe has.
Joe sleeping on his tummy


Just a quick update as I am shattered and can hardly keep my eyes open.

Joe is now stable again, although still desatting regularly. His oxygen levels are varying between 40% and 70%. He is having a blood transfusion right now so hopefully that will help. If he continues to desat the dr will x-ray him again and consider switching him to a ventilator that shakes air into him at a very high rate, instead of the conventional ventilator that pushes air in. He is now up to 2ml per hour of milk, and is increasing that by 0.5 ml every 12 hours until he is up to his full allowance.

Harry is still looking a little yellow. He may have his morphine increased today as he is getting very active and is risking pulling his ventilation tube out. His milk his also up to 2ml per hour, and increasing by 0.5ml every 18 hours.

All-in-all the drs and I are very pleased with both babies this morning, although Harry continues to do a bit better than Joe.

Monday, 8 February 2010

Joe and his lungs

There are three quiet times every day, between 7.45 and 8.30 both am and pm, and from 1.30 - 2.30 every afternoon. It’s quiet time in the NICU right now and I have been told to leave so will give you a brief update before I am allowed back in.

Poor Joe is having a tough time. He has had lots of bradys and desats today, often requiring ‘bagging’ to bring him back to normal. Bagging is where they put a mask over baby’s face and manually force air into the lungs using a bag attached to the mask.

This afternoon they decided to change his ventilation tube to see if that helped, but unfortunately Joe hasn’t coped very well with the procedure at all. His lungs partially collapsed, and his chest was very stiff with little movement. His sats were struggling to stay in the 80s (ideal is between 86 and 95 for babies on ventilation) and he is on 100% oxygen.
There is very little that can be done, except give him time to recover. The dr is checking back on him frequently and will consider a change in the type of ventilation if needed. He said this is just one of the complications of being born so early. Joe’s lungs are very tiny and just struggling to cope at the moment. Once he is 14 days old they can use steroids to reduce the inflamation which may help.

His feeds have been stopped for a few hours to give his body as much rest as possible.

I’ve neglected poor Harry a bit I’m afraid - although I completely trust the nurses to look after Joe properly, I feel it’s my job to keep an eye on him, and his sats levels. They are so busy they don’t always respond to the alarms as quickly as I’d like (ideally I’d like 1-1 nursing and a response time of less than 3 seconds, but I can’t have everything!!). So, I have hardly left Joe’s side, but luckily apart from his ventilation needing some fine tuning, Harry has been a good boy and continues to truck along steadily. He needed blood and platelets this morning but that seems par for the course for him now.

Both babies were weighed today. I haven’t had a chance to confirm Harry’s weight as his nurse got distracted by another baby, but Joe is down to 525 grams or approx 1lb 1.5oz.

If you can keep little Joe in your thoughts tonight it would be much appreciated. Today is the first day I’ve been really scared he may not pull through this. I know I’ll be taking two babies home in a few months, I have to. My heart would break if anything were to happen now. Keep fighting Joe!!

Update: Harry is 589 grams which is 1lb 4.5oz so he is now the bigger twin! Great growing Harry :)

Sunday, 7 February 2010

Houston, we have an eye!

More of the same here in Babyland. Babies stable and happy. Both of them are now on 1ml of milk per hour and still up and down with their ventilation and oxygen. Harry needed both blood and platelets overnight and is looking a bit yellow so he’ll be basking under the blue photo therapy lights soon I’d imagine.

The great news is that Joe is starting to open his eyes! Well, one eye anyway, but it’s a start. When I shield his eyes you can just about see it starting to open a little bit. Hopefully in a few more days we’ll see them properly :) It makes me so happy to see these tiny little milestones. It will be so great to be able to see into his eyes and imagine what he is thinking.
This is little Joe in the picture. I took a picture of Harry too, but it makes him look like an over-cooked chicken so I'll try and do a better one later.

Jack's blog (Feb 7)

Yesterday we went to the hospital to see the babies. On the way in Ben got stuck in the doors of the hospital. It took a long time to get to there. We had to wash our hands before we saw the twins and we had to take our jumpers off. We saw Harry first and he was moving a lot but before we saw Joe we had to wash our hands again. After we saw them we went to Tesco's to get some lunch and I nearly got squashed in the door. We ate our lunch in the car park I had a cheese roll, Ribena and some Pringles. Mum thought my lips were sore but it was the Ribena on them.

Ben's blog (7 Feb)

Yesterday we went to see the twins at the hospital. It was a journey of about an hour and a half to get to Portsmouth. When we got there there was lots of hand washing to do and it was really hot. We saw Joe and Harry and they were really tiny and had lots of tubes in. They were about the same size as Millie's smallest toy baby. On the way out I got stuck in the revolving door at the hospital and on the way in also. Jack did the same on the way out.

Are they ours?

I've had a few people email me wondering if Joe and Harry are ours, or surrogate babies.

They are all ours!

For those people reading this who don't know us well, I had surrogate twins in 2008, and little William last June, also a surrogate baby. All three of them are beautiful, perfect babies and I am as proud of them as I am of my own children :)

Edited to add that an update on the babies will be coming later.

Saturday, 6 February 2010

Visitors for the twins

What a difference a day makes. Both boys have had a good day today. Joe’s has been a little busier than Harry’s but both babies are stable and ticking along which is what we what.
Harry is now up to 1ml of milk per hour and is tolerating it well. To put that into perspective, I expressed 700ml yesterday - I literally could feed the whole unit at the moment, but as the nurses keep saying, better too much than too little. They all laugh each time I take in yet another bottle of milk. Each mum has two rows each in the freezer for milk, and mine currently fills my two rows, goes along the back of the freezer, and up the other side. What can I say? Just call me Daisy the Cow ;) I’m a bit rubbish at the whole pregnancy thing, so at least I am good at something.

Both babies are on morphine to keep them sedated so they don’t fight against the ventilator, but this morning Harry’s dr decided to half his dose to try and prompt him into making a bit more of the breathing effort on his own. Unfortunately Harry now has ants in his pants and won’t keep still. His little arms and legs are waving all over the place, and while some activity is a positive sign, we don’t want him wasting all his energy as he needs it to grow so the morphine is likely to be increased again for him. Other than that he has had a settled day. I did his nappy this afternoon and helped change the sheets in his incubator which was nice, I feel like a proper mum when I can get involved in his care.

Joe is back under the photo-therapy lights for jaundice, and this morning he had another transfusion of platelets. He also pulled out his line going into the artery in his belly button. This is bad because it’s the line they use for taking blood every four hours to check his blood gases, and without it, it means he’d need to have heel pricks to take blood instead which isn’t ideal as his feet are so tiny. Luckily although it took a couple of attempts a few hours apart, they managed to site another arterial line in his arm. He has also re-started milk at 0.5ml every other hour. He hasn’t had any more bradys today, thank God.

Also today was a very special day for Joe and Harry as they got to meet their wonderful big brothers Ben and Jack. They are going to update the blog tomorrow with their thoughts about the babies. Being here is like living in a little bubble where you forget all about normal life outside the hospital so it was lovely to spend a couple of hours with them and David doing normal family stuff.

a small blip for Joe

Written at 6pm last night. I couldn't get online to post it then. Death to mobile broadband!

"It’s been a bad afternoon for little Joe. He is having lots of bradys (bradycardia - as far as I understand it, this is where the heart rate slows down to unacceptable levels) and desasts (desaturations, where the oxygen levels fall in the blood). They aren’t really sure of the cause, but his ventilation and oxygen levels has been turned up to help and he will have a blood transfusion this evening. The poor little chappy now also has both arms splinted, one with his long line in, and this afternoon they added a cannula in his other arm to give him a transfusion of platelets. They are also stopping his feeds for a while, so he is now mil by mouth once again. Today they were increased to one ml per hour so they want to rule out the increase in milk being the cause of the bradys. Blood gases show he is struggling more than usual and a sample of blood has been sent to check for sepsis. His nurse says she has a gut feeling something is wrong - he is very pale, and much less feisty than usual. Hang in there Joe, please.

It’s been an emotional day all round today. A mum brought her 6 month old to the unit, who was born at 24 weeks. She was born weighing just an ounce more than Harry and after nearly four months in hospital is now really chunky and healthy, despite needing oxygen. I was okay until her mum mentioned that she was born one of a twin, and her brother didn’t survive. I just about managed not to burst into tears but it really brought it home just how far Joe and Harry have yet to go."

Now an update as of 3am, Saturday 6th. The good news is that the blood seems to have done the trick. No more bradys, his colour has pinked up, the drs thought his xrays all looked okay and he is generally looking more comfortable. Unfortunately I am now not able to touch him, or Harry either as I have come down with a slight cold and a scratchy sore throat. It's just typical isn't it? I NEVER get colds, ever. Why now? The one time in my life I can't wallow in bed and be waited on :(

To leave on good news, both babies head scans looked perfect. Please, please God let this stay this way.

Friday, 5 February 2010

Friday 5 Feb (am)

Sarah's joy of being re-united with her lap-top was short-lived following a problem with her mobile dongle so I am back in charge of the blog. It's been a busy night with Harry having another transfusion to help get his iron levels up. His blood oxygen levels are low and the Docs are a bit puzzled by this and as a result his ventilation has been increased again. They are pondering whether the problem may be mucus around his ventilation tube so that may be replaced later today - his blood pressure is also low. All in all a bit of a struggle for Harry at the moment but he's still taking his milk which can only be good news.

Joe's had a much quieter time and he now has a long line in his arm which hopefully will help bring some colour back to his toes which are still purplish !

I'm taking the littl'uns over to see them tomorrow and Ben is going to update the Blog on Sunday.

Thursday, 4 February 2010

Online from the hospital!

Yay! My laptop and I are able to resume our close and loving relationship :) I am now online at the hospital using my mobile broadband dongle thingamajig. It's good to be back :-D

I was with the babies this morning while the doctors were doing their rounds, and they (the drs) are very pleased with them (the babies). Apparently they are doing as well as could possibly be expected for such early babies. Please God let this continue.

Harry has now started breastmilk. 0.5ml every two hours. he dr said it's not so much for nutrition at this stage as he will continue to get all he needs from his TPN (Total Parenteral Nutrition) but will adjust his gut very slowly to being able to tolerate food. He will also be on anti-biotics for the next five days to try and keep on top of his infection. Later today he will also have another transfusion of platelets to help his blood clot. He is now on quite a low pressure on his ventilator but the dr doesn't want to take him off it just yet as he is so small and even the smallest nasal prongs they use for the C-Pap (next stage down of breathing help) would be too large for his tiny nose. Just hearing that C-Pap is in the not-too-distant future is fantastic news.

Next we moved onto Joe. He is plodding on, needing a bit more support from the ventilator than his brother. His infection levels were very slightly raised so they are going to monitor them, and also keep a very close eye on his feet due to the discolouration he is getting from the reduced blood flow. His milk has been increased from 0.5ml every other hour, to 0.5ml per hour, so fingers crossed he enjoys that. He has also started to do very small amounts of poo - Harry has yet to reach this milestone.

Both babies will get their long lines put in either today or tomorrow and both will also get their one week head scans. Wow, one week! It's been one whole week since they arrived. They are such a part of my heart already I can't imagine not having them. Last Thursday evening was one of the saddest nights of my life, not knowing whether they were alive or not, not knowing if they were going to survive the first 24 hours. I'm feeling so positive now though. My babies know how much I want them, and love them and I just know they are going to be fine.

Thursday 4 Feb (am)

A bit of a worry today as skin tests on Harry have come up positive for a Group B Strep infection which can be very dangerous if it gets into his blood stream. He's been on antibiotics for it and the Docs will review it later. Other than that he's doing really well with his ventilation being reduced from 60 bpm to 40 bpm. His foot is a much nicer colour today but he couldn't be weighed yesterday due to his fragile skin.

Joe was weighed and he's now 540g and he's continuing to tolerate his milk which is good. He's got a few purple toes due to the positioning of his line affecting his circulation and the humidity in his incubator has been reduced so he's having oil on his skin to keep it in good condition.

So fingers crossed that the infection gets dealt with and I'll update things later if we get any news.

Wednesday, 3 February 2010

All Harry. I couldn't get a clear one of Joe as I was getting too much glare from the incubator.

I am now home for a couple of hours to collect some clean clothes and see my other rugrats before heading back to Portsmouth this evening. Thank goodness they are letting me stay - I can't imagine having to be this far away from them every day.
David has done a great job of updating everyone regularly so there isn't much to add. Joe is comfortable at the moment, and looking lovely and pink after his 12ml of blood last night.
He is on and off insulin as his sugar levels are all over the place, but other than that he is doing well. He is currently having 0.5ml of breastmilk every two hours through a tube that goes into his nose and down to his tummy. He seems to be absorbing it well.
Harry is also doing very well. He has been put on anti-biotics as a precaution as the infection levels in his blood are slightly raised. His blood pressure and blood sugars have been stable but he has yet to be started on milk due to his rocky first couple of days. His biggest problem is his skin. He is so bruised and sore that he now has to lay on silk sheets to prevent as muh friction as possible. This morning he was looking a bit orange so he is back under the photo-therapy lights for jaundice.
We had a scary moment last night at about 3am when I was visiting him, when he lost the blood supply to his right foot where the arterial line goes in. It just turned white and lifeless before my eyes and looked just like a plastic doll's foot. Apparently because everything is so small and fragile the arteries sometimes go into spasm and clamp down preventing normal blood flow. Luckily the dr (miserable woman, think she didn't like being woken up) did her magic and by the time I went back to bed an hour later the colour was returning and looking better.
I've changed his nappy twice now, which isn't really changing a nappy at all, but swapping some wee-soaked cotton wool balls for clean ones, but it's all a step in the right direction, and it's nice to actually have something to do and feel involved.
My days are forming a nice three hourly pattern. Express milk, wash-up, see babies, eat or sleep, repeat. Around the clock. I enjoy seeing the babies most through the night as the unit is quiestest and the nurses have more time to explain things and have a chat.
Baby Harry

Wednesday 3 Feb (am)

Quite a busy night for the boys last night. Firstly little Harry had a problem with his foot when the blood supply to it failed...Docs think this was due to a block caused by the arterial line and all has now been sorted but it's something else to watch for. Sarah had earlier changed his nappy and was worried that it was something to do with that - but apparently not. He's also had some platelets added to his fluids to help with blood clotting. Joe's had a blood transfusion due to low iron levels but otherwise he's fine. The really good news is that both were scanned yesterday and there is no signs of any bleeds around their brains.
Sarah's home later for a while so she may do the next blog.

Tuesday, 2 February 2010

Tuesday Feb 2 (evening)

Just a quick posting to let everyone know that both boys are stable and have had a good afternoon with their blood levels settled. Sarah's back at home tomorrow for a short while so we're all looking forward to seeing her again.

Tuesday Feb 2 (pm)

A bit late putting this blog on but got there in the end. Firstly Joe had some milk yesterday and is tolerating that well - he's on 0.5 mil every two hours. His ventilation had to be increased overnight as did Harry's...they're now up to 60 per minute whereas Joe has been as low as 25. Joe's also been put on insulin to help out his blood and Harry had another transfusion overnight but is more stable now. His skin is still very delicate and he's now got a silk sheet to help stop it getting too irritated although he's got some damaged skin where the tape was used. Not only is it uncomfortable for him but it also increases the risk of infection.
Since then it's been fairly quiet for them, Sarah's still staying over there but will be home for part of tomorrow for a bit of a break. I've got a stinking cold along with Jack and Millie but Ben's fine and looking forward to seeing mum again.
Thanks again to everyone who's got in touch.

Monday, 1 February 2010

Monday Feb 1 (pm)

Another day has passed and the boys are still with us. Sarah had a chat with the docs today and they think that the twins are even younger than we thought....they estimate that they are under 23 weeks because their eyes are still fused. Apparently that doesn't necessarily mean that there will be any problems further down the line and in any event Sarah's pretty sure about her dates.
She's managed to get some pics of Joe which are on here - and yes, that is Sarah's hand you can see and not the Unit's resident big-handed Giant so that gives an idea of how tiny they are.
Harry was weighed today and he's now 535 g (about 1 pound 2 ounces) - for the technically minded that equates to a small plastic bottle of Heinz Tomato ketchup. Joe's ventilation was increased this afternoon just to help him out a bit. ..Harry's had a quiet day....I think their lines are going to be changed tonight so that may put them back a bit.
Thanks for the messages of support from's nice to know you're all out there wishing for them to pull through.

Monday February 1 (am)

Just a quickie to say that both boys were stable overnight and will put a pic of Joe on later.