Thursday, 17 May 2012


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
 Sarah and Nicci

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