Sunday 5 August 2012

Sleep Deprivation

It's been a while since I posted and thats due to one reason...sleep deprivation! Our boys are doing so well in so many ways but they just can't grasp the concept of sleeping without the need for our help in settling them every two hours. After months of getting just 3/4 hours broken sleep a night, we finally gave in and have enlisted the help of night nannies. It was a desperate move so Matthew could function at work and I could stop crying! We hope and pray every night that they sleep but each morning the night nanny comes down to our pull out day bed looking utterly exhausted and tells us of the amount of times they woke during the night. We often dont need her to tell us as despite ear plugs, we still hear the monkeys shouting at the top of their voices. We end up getting so anxious at night time as we know we're in for a long and painful night! One day boys you will sleep and that will be a very very happy day!

A quick update:

Boys are off Oxygen completely!!! We did our last sleep study and can now see our boys beautiful faces all day (and night!). They're smiling so much and developing so well every day now. Unfortunately the good times lasted a few days when Xander developed bronchiolitis. He was coughing and wheezing so much and after two trips to the GP they decided the best thing to do was to get him to A&E asap. I drove him to hospital totally gutted and of course in tears that we were going back. We were seen straight away (having a prem baby is like being a VIP!) and they monitored his O2 levels which were thank God fine. They gave us an inhaler to give him and told us to keep an eye on his feeding and breathing.  He took about a week to get better and finally started smiling again - poor Joeby got it straight after and he was sick for the next week.

The boys are now better and we're focussing on helping them to learn to sleep as much as possible. It's really quite extraordinary how despite being in exactly the same routine in the day, they take it in turns to wake in the night meaning we get about an hours sleep at a time. Once you're awake and have settled one, you know it wont be long until the next one wakes and the pressure to get that precious bit of sleep is just immense and you end up tossing and turning and staying awake as a result! We're both finding it just so difficult and end up so desperately tired every day feeling sick, swaying and just not being able to function as we've not slept properly for such a long time now. We have a sleep training expert on board now giving us advice and she explained that as the boys were prodded and poked and have gone through so much in terms of reflux, oxygen tubes, constipation, colic, bronchiolitis etc it's no wonder they havent had a chance to develop their ability to self settle and sleep. We're now in sleep training and hope that they will soon learn to settle themselves so we can start to feel better and a little happier! We've got to 7am before and been so cross, frustrated and so upset...then we look down at the boys and they give us their biggest smiles. Our hearts melt and we're geared up to try again...saved from ebay one more time!

Joeby was doing so well - it was Xander that was the problem but in the last couple of days it's Joey who's been waking. He's been putting his hands in his mouth, dribbling and had pink cheeks yesterday...the dreaded teething!!!! According to our sleep training expert she says he should still be able to self settle through the discomfort...keeping everything crossed! We cant afford to pay for the night nurses to too much longer so something has to change!

They're both fully weaned now so they're getting plenty of food and milk in the day...come on boys, give us a break and SLEEP!!!!

Inbetween the awful, sleepless nights the boys are smiling so much and at nearly 4 months old (7 months) they're doing just so well. We spend a lot of time in the house as it's a mission to get them fed, cleaned clothed and ready to go out but we go for a walk in the afternoon every day just to get some fresh air and to remember that there is life outside the living room! We've come so far already and as soon as we can get this sleep problem resolved then life will be easier....I hope! Pic of our beautiful boys, love their little smiles so much xxx






















Wednesday 13 June 2012

Movement!

Well, it turns out nanny M wasn't as amazing as we thought! Although we will be forever grateful that she taught us how to ged wind up properly and the boys are feeding much better  - her routine wasnt very useful and the amounts she told us to put the boys on for feed were really unrealistic and they were starving - infact they lost weight at their next weigh in. J didnt sleep through ever again and infact they were waking more than ever before...we were feeding them individually when they woke up as she instructed but as anyone with twins will know this is a massive no no and we were getting about 2 hours sleep a night. Sleep deprivation is a form of torture for a reason and my God we were both just losing the plot - I say we, but really I mean me! Matthew seems to cope much better with less sleep. I on the other hand was feeling sick and dizzy again and feeling like I was sinking a little.

After a few more nannys came to stay and after them all showing us their techniques on how to settle, feed, burp, play and handle babies something in my brain clicked. I'd had enough and suddenly I felt calm and decided that with all these nannies telling me whats best, I was losing my confidence yet again and I would rather just do things my own way. I'll probably get it wrong and I'm sure other people do things better but I'd had enough of being told I should or shouldnt - these are my babies and I'll do what I think is best. I'm so grateful for advice but if one more nanny tells me another way to sleep train a baby which contradicts all the others then I'm going to go mad!

The boys are still only letting us have about 4 hours broken sleep a night - mainly as we go to bed at 8.30pm every night just to get an hour in before the dreaded night waking! We're both shattered but have to have faith that one day these monkeys will let us sleep and we can have a conversation with eachother again!

I'm still not able to be on my own with the boys yet - their little guts mean that they're so difficult to burp and it takes such a long time to get anything up that it takes two people and definitely not a mum with tendonitis in both wrists! The pain was so bad that I couldnt even lift a kettle let alone a baby. I couldn't tie my hair up, brush my teeth or change their nappies without wincing in pain - so enough was enough! i went to my GP for him to give me the steroid injection in both wrists.  He looked at my wrists and agreed that I have bad tendonitis from overuse due to being a new mum of twins. He looked a little hesitant and I asked him if he was sure he'd be able to do it - he said that he has done it before but if he got the wrong tendon then it wouldnt be effective and the more you have the less effective they are. He then said it would be best if I went to a specialist. Argh!!  Leaving the twins at home to get to the GP was a mad panic and now it was all wasted! So...the long and short of it is, a specialist gave me two steroid injections - I;d love to say I was really brave but my mum may not quite agree! I'd told her not to come with me at first - after everything I'd been through - the labour, the op for the retained placenta, the emotional rollercoaster of the boys in the NNu for 100 days ...of course i'm brave enough to have two injections. Apparently not. I was shaking like a leaf to the point where my legs were bouncing off the bed. Thank God my mum was there! The Dr said it may get worse before it gets better - and it did. Poor Matthew did all the feeds by himself as luckily the boys woke up separately in the night. We then had my mum and another nanny the next day so I could rest my wrists. I cant tell you how frustrating it is to not be able to to hold your own baby. The pain is slowly getting better but I may need another injection to get rid of the pain completely. My mums going on holiday soon...who's coming with me?!!

Although the boys have their problems and keep us awake all night they're just so gorgeous and I love them more and more each day. They're starting to do little smiles and love cuddles and their play mat. They love baths but hate getting out and most of all they love a foot massage! They're suckers for a bit of tlc and just love being stroked or massaged - just like their dad.

The boys have done one sleep study as we'd have enough of the richmnond team and their faulty machines - so we paid for another team to do it. The results were brilliant and they've been turned down to 0.06!! We have movement!! We need to get to 0 before they're off completely so we have a way to go but we'll keep paying or badgering whoever we need to to get them off O2 so they can be free from cannulas once and for all.

Xander

Joeby


 Xander

 Xander
Bathtime! (the calm bit)



 Tash pregnant with her twins



Tuesday 29 May 2012

The Turn around

The boys have been running us ragged since they came home. To the point where I was still taking myself off to the toilet to have a good sob - something I thought I left behind at the NNU! We were demand feeding them as others said they're too little to be in a routine but as there are two it meant that they were feeding at different times, sleeping at different times and we had an average of 2 hours sleep a night. Plus with their reflux and screaming all day, I was starting to go mad.  I was beginning to hallucinate I was so tired. I was permanently dizzy, felt sick and on the brink of tears all day. All I could hear and see when I closed my eyes were screaming babies!

When the boys were in the NNU , all I could think about was getting them home. As long as they were home and I could shower them with love, things would be fine. How wrong I was. I needed help desperately and...we found it!

Things have changed so much, it's like having two new babies. They seem so much happier and I have managed to up my hours to an average of 5 hours sleep a night. I have complete faith that very soon, I'll be getting a lot more. Things changed as soon as we met Margarite. M has been a nanny/maternity nanny for 30 years and knows babies so ridiculously well it's unnerving.

She was recommended to us by a friend and after meeting quite a few nannys I wasnt particularly excited but as soon as she entered our home, I knew she could be the one to help us. She saw me feeding Joey (for the 12th time that day!) and immediately told me to stop. I was rocking him at the same time which was apparently all wrong. Rocking is for sleeping. Feeding must only be done with eyes open and babies must not gulp. We told her about the babies reflux issues and how uncomfortable they look. Her first words were that reflux was a myth - it doesnt exist. I reminded her that the boys had a probe down their throats for 12 hours at the hospital which measured the acid in their stomachs and it proved that they were indeed very refluxy.

M is very old school and takes no nonsense. No no no. No - is her favourite word which actually makes things confusing when she means yes but this time she really did mean no! She said that all babies get acid in their tummies when they feed - it doesnt mean they have reflux at all. She said they were uncomfortable in their tummies as we were over feeding them (i had been mistaking their hungry face for hunger when apparently it means wind or tiredness,,,and sometimes hunger). Very confusing but...ultimately she said the boys need to get into a routine, be given the correct amount of feed (which was less than the govt. recommended amount and less than any other professional would recommend) and that they need to be winded a lot more. Having been under so much pressure at the hospital to get the boys to finish their feeds so we could finally take them home meant that Matthew and I were so happy when the boys finished their bottles. Error. M said that the amounts recommended are too high and with all this surplus feed and wind building up, it was causing the boys so much pain in their guts. Medics misdiagnose this all the time as reflux - she told us to stop their medication , stop tilting their baskets and to put them on normal milk. No need for prem milk any more. She's not a nurse - nor doctor so I was really really worried about stopping their meds but in my desperate teary sleep deprived state I agreed. She talked us through a routine and the boys have been just incredible ever since.

She often sees parents with babies who have colic and says the same thing. Cut down on the feeds, encourage focussed, well paced feeding and burp before during and after the feed. Suddenly colic disappears. Reflux doesnt exist. This woman has totally changed our lives and for the last two days my babies have been so peaceful - not one painful cry.

Rather than the boys feeding every two hours, they have a set routine and I am amazed and thrilled to say that last night (day two of the routine) Joey slept from 9pm - 5am! Unbelievable! Xander managed 9pm - 3am then after a feed, 6am.

The last two days have been just so lovely and the boys are loving their new way of life. I am finally finally enjoying my two beautiful boys and back in the land of the living!

Now we just need the community nurses to get their arses in gear with soring out their Oxygen and we're away! We did another sleep study - my poor mum helped and stayed over and kept an eye on them all night making sure their figures were good meaning she didnt get a wink of sleep. We knew the results were good so we were really excited about the consultant coming back to us telling us we can turn the O2 down. once again, the nurses came back telling us the machine didnt record the data. It's been 5 weeks since the boys came home and we're still no close to getting them off O2. I was fuming and have pleaded with them to sort the situation out. All this delay means they could end up being on O2 for months longer than necessary. It's uncomfortable for them and so difficult to manage them with all the tubes. Matthew and I are so upset this is still going on and we're desperately looking for a solution - even if it means buying a machine ourselves and sorting it out privately. I dont want these tubes on the boys a second longer than necessary. Now that they're enjoying life, they deserve to be free from any reminder of the hospital. Mission of the week - get this sleep study sorted!

















Thursday 17 May 2012

Walks

Things have got quite a bit better in the last week. The boys reflux seems to have got a lttle easier to manage although they still wake up in pain which is difficult to cope with as its upsetting and worse between 2am and 5am - the time when our coping mechanisms are at our lowest! We're trying all kinds of tricks for reflux, wind and colic so fingers crossed something will work soon.

We've been for some lovely walks with the boys and had some really nice cuddles which makes it easier as it makes me feel like we're just like other parents enjoying their babies. We've been to the river and had a quick lunch outside in the sunshine with Aunty Julia - bliss! We're still waiting for their first smile but as their corrected age is 4 weeks it may only be a couple more weeks! I think my heart would literally melt to know they're happy and to see their gummy little grin!.

I still get so frustrated with the O2 tubes and It's so hard lifting the babies and being careful not to let the tubes get caught on things and pull at their faces. Its hard enough juggling the boys as they cry and wriggle without having to watch out for tubes getting tangled and pulled. The boys are also finding the cannulas annoying and pull at them all the time. Joey in frustration actually tore them off his face yesterday. He tore the little stickers right off which must have hurt him so much. I cried with him a little and told him how sorry I was for him.  He then lifted his little hand to my face and I know he was just having a stretch but it was almost like he was wiping my tears too! We'll get through it all together.

In order for the boys to come off O2 they need to do sleep studies (leave a monitor on their foot overnight and a machine records how much O2 is in their blood). If the results are good, we can turn the O2 down and gradually they come off it altogether. We've tried a few times but then first couple of times the probe wouldnt stick and the last time, the machine was faulty. Its now been three weeks and still no proper sleep study. I've asked for the machine again but the nurses say its broken. They dont have money for a new one so they have to wait for it to be fixed which could take a while. This just delays things even more which they dont see as a problem. Matthew has called the hospital to see if there's anything we can do or borrow a machine from them as the sooner the boys are off the O2 the better.

Turns out I dont have carpel tunnel so the physio left a message saying she doesnt know what it is and will have a word with the GP. So in other words, she's passed it on for someone else to deal with. I bumped into another twin mum on the weekend when out with the boys for a quick walk and she said she had the same in just one wrist and she said it was RSI. That may be what it is as we have to hold the boys in an awkward position to feed them and I was doing it all day at hosp for three months. I now have thumb and wrist splints on so maybe they'll help.

Although things are so hard and there are times when i'm pulling my hair out that I cant help the boys more, we do have some lovely moments and I still think of the babies and parents in the NNU who have it much worse. They may not ever get to see little smiles at all. Being in the unit every day for 3 months will haunt me for a long time!

I'm also so lucky to have such lovely friends -one  friend is taking a holiday day from work just to come and help (George you are amazing), others coming to look over the babies and take me for some fresh air (Nicci and Sarah - love you!!) Lucy for coming on a day off and helping with feeds and making an amazing lunch and others coming to visit and see the boys - we're so loved and for that i'm so so grateful.

Matthew is off from work today so we're off for a walk by the river - I love days when he's home. No matter how tired we all are, if the boys aren't in pain then we're possibly the happiest family ever.




 Xander on a quick cannnula change
 Joeby
 Sarah and Nicci
 Xander