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








Tuesday 8 May 2012

Finding our feet


It has taken nearly two weeks to find the time to write in my blog. My God the last couple of weeks have been mind blowing.

We brought the boys home and immediately met with disaster! They were on liquid milk at hospital (special milk for prem babies so only available on prescription) but the hosp sent us home on the powdered version as its cheaper. Thank you NHS, The boys didnt take to the powdered milk at all and they just weren't feeding. It was so thick that we couldnt get the milk out of the teat to test the temperature so in desperation we were sticking our fingers in the milk to check it wasnt too hot..which in turn meant it wasnt sterile. All this was happening at 2am the day we brought them home. Matthew called the hospital and they said to come in and get some bigger teats. He did just that but still the milk was too thick . He then went back again (4am) to get more liquid milk. This totally ruined any routine they had and we had to go back to 2 hourly feeds. They take an hour and a half to feed...its no surprise that the next few days were a blur.

The boys were difficult feeders at hospital and they were even more difficult at home. We were so institutionalised by the hospitals strict routine of the babies finishing their feeds and we were trying so hard to do the same at home not really realising that sometimes babies just dont want to feed that much and will probably take more later. As soon as we were told that, things got a little easier. But - the boys have bad reflux and although they're on reflux meds, unless you prepare the meds properly they're pretty much ineffective.

I asked one of the nurses if we could pre prepare the meds for the day so we're not doing it just before a feed and she said yes , thats fine. Just to make it clear, we have a big bowl full of different meds which need to be syringed out and put in to different bottles for the feeds. As both boys are on different amounts, it's quite a long and complicated task so preparing them in advance would save a lot of hassle - not much but a little! So - we pre prepared the meds and the boys reflux just seemed to be getting worse. They were screaming and wriggling around after the first bit of milk. It was so upsetting to see and i consequently started to dread their feeding times. Matthew was firmer than me so did ok but I couldnt feed them if they were in pain. I lost my confidence completely and wondered if they just didnt like being home or if they just didnt like me.

Some said that the boys were just difficult feeders but I knew something wasnt right. I read the packet of meds that deals with their acid reflux and it says to give it to them immediately or within half an hour. It also says to mix it with cooled down boiled water - not boiling water which I had been doing. Thank you to the nurse who said pre preparing was ok. IT IS NOT OK!

I'm ashamed to say that before i got to the stage of reading the packet of meds, I had called the NNU to tell them what was happening and I had googled the issue and seen that lots of babies were lactose intolerant. I decided that was the issue! They said it was doubtful but to bring them in toA&E. So, we did! Just before the doctors saw them, we fed them and they fed like a dream. It was so hot in there that they were both sleep feeding (so reflux wasnt a problem..until later that night) so we sheepishly left and said we didnt need to see the doctor and apologised for wasting their time.

The hospital also didnt send the boys home on the max amount of anti reflux meds as they were meant to so that was a whole other drama trying to get in touch with them and up the dose.

So..now we've got the meds right and we've been through a million different types of teats and bottles, we're almost there.

I have my confidence back and I'm slowly managing to look after the boys. They're both attached to the O2 cannisters which I find hugely restrictive. The tubes get tangled and you have to be so careful not to trip over or pull them too hard. The boys like to pull the cannulas out of their noses which gives us heart attacks when we check on them and find them hanging out of their noses! We've resorted to letting them sleep in the living room as it's so difficult moving them in and out of their room..or any room.

We have to change the sticky bits and cannulas every week which is another traumatic event. The sticky bits are really sticky and the boys cry so much when we take them off. We then have to hold them still whilst we put new ones on and by the end , we're just exhuasted from the stress of it all.

They;re also tested every few days to check their O2 levels and they need blood tests. One of the nurses tried 3 times on xander whilst he screamed and screamed. I was close to throwing her out of my house when she said she would come back another day. Thank you for bruising my soon in three different places and leaving him snuffling for hours after you've left.

We've taken them for a few walks with their travel Oxygen. Matthew loves it but I spend a lot of the time wondering if the travel O2 is still plugged in and if we'll be back in time for their next meds!

To make things even harder, I have carpel tunnel in both my wrists. It's like someone is tugging at the nerves in my wrists. It's so painful but I just have to get on with it as I need to pick up the monkeys all day.

So..the drama continues and my boys are still being put through more pain with their blood tests and o2 cannula changes. They're home and i can keep an eye on them but I cannot wait for their O2 cannulas to come off. I want to see my babies faces and for them to be free of tubes so they can be picked up and carried around the house.

The last three months have been so full on and my life has been on hold just making sure the boys are being looked after properly, watching them fight their daily battle with the nurses and doctors. I now feel like we still have a way to go and getting two hours sleep a night has meant quite a few teary days. I dont have time to do anything but feed, change, burp, trip over O2 tubing before starting all over again. I've forgotten what its like to go for a walk, shop, see friends, sit in a cafe, have time to myself, read, take in fresh air or relax.

Matthew is back at work with awful timing of having to work extra hard and long hours. We've enlisted the help of a night nanny and have help some days but it's expensive and i'm desperate to be able to look after them myself so we dont have to spend so much on care.  I'm not sure if it's physically possible but I'm trying. Our mums have been just amazing bringing food and helping, staying over to help with the nights but they cant come every night and Matthew and I sigh a very deep sigh when it's just the two of is as we know we're set for approx 2 hours sleep!

We tried to get them in a routine but they do pretty much the opposite of what they're meant to!

If anyone is reading this then I'm sorry for not replying to calls/texts - life with prem twins on O2 and meds is not easy! This blog has taken me three days to write!

I love having my boys home so much but I'm struggling with how intense looking after them is. Being so restricted with their o2 and their meds is harder than I ever could have imagined. I made a promise to the boys in the hospital that I'd give them so much love and spoil them rotten and I feel a bit like i'm failing them.

People say it will get easier - I hope so as I need some kind of respite from being exhausted and anxious.  As hard as this time is and as much as I cry and get frustrated that this happened to us, I love the boys so much and will do everything I can to show them how much i care. Even if I get it wrong every now and then!




 Grandmae feeding Joeby


 Timmy


 Naughty Xander!
 Sleepy Joeby





 Quick photo inbetween the cannula change - Xanders beautiful face
 Joeby's chubba cheeks! He's lost his hair!

 First came Xander...then came Joseph vests from Jess!



 Aunty Sarah
 Barry taking it easy
 Gibbo and sleepy Xander
 Is there something on my shoulder? Bex
 Grandpa Bill

Feeding is a two man job! Nana Fox