Oxygen training

The boys have evened themselves up a little now and they're both doing as well as eachother. Fingers crossed that means that they'll come home at the same time. It's very difficult to know how they're doing as one day they can be on 0.01 O2 and the next day they're on 0.06 so they dont seem to be consistent in their progress. Again - it's normal for prem babies to be up and down so we just have to be patient.

They're now on two bottle feeds to one tube feed so they're doing really well. Joey is especially doing well - he's gulps his feed down and is getting good at burping and farting his way through! Xander finds it a little more difficult. His reflux seems to be much worse and he looks like he's struggling when feeding. He looks so uncomfortable and wriggles around and cries. I give him lots of kisses and then remember that doesnt help so I try and burp him but he's so little he finds it hard to burp. Nurse Claudia is especially good with him and is so gentle. She has the knack of lifting him and moving him around without disturbing him. I've tried to move him gently a few times but it seems to end in vomit. Today it went straight down my top! Not every nurse encourages holding him after feeding as they think its bad habits and that he should be put down to rest but others think he needs to be upright for his reflux. It's very difficult to convince one nurse that another nurses technique works and they seem to take offence to it so you have to be very diplomatic and smile sweetly and beg that they please try. I'm so fed up of asking if I can pick up my baby and ask to please do what works best for my baby. MY baby! I can't think about what happens in the night when I'm not there as it keeps me awake worrying. Instead I think about them both being peaceful and sleeping all the way through until I arrive in the morning!

Today we were told that they're going to do a sleep study on the boys. This means they'll see how many times they desat in the night and what the max amount of O2 is that they need. They do this in preparation for them coming home on Oxygen. It's looking very likely that they'll be home on Oxygen so they'll come home on the maximum amount and a team of people will review it weekly at our house and bring them down slowly. They could be on it for a few months or a few weeks. It's a shame they'll be home on Oxygen but we're used to the tubes and monitors now so we'll just be over the moon to have them home. A team of people come and set up the canisters in our house and teach us how to use them. Once the boys have their bottles for every feed and once we've completed the resusitation course we then room in for the night (stay at the hospital) with the boys and make sure we're happy and then...home time!!! This could be in two or three weeks!! Really trying not to get excited as I dont think I'll truly believe it until it happens but I'm obviously bubbling with secret excitement inside!

The boys will be coming home on 3 hourly feeds. They take two hours to feed and burp meaning we have an hour to sleep/eat/wash. How do people survive?! I may not be in contact much when the boys come home!! Both our mums are so keen to help which is amazing. I dont know what we'd do without them. My mum throughout all of this has cooked and filled our freezer to make sure we have enough food for when we get home from the hospital late at night and dont have energy to cook. She's been a life safer - Matthew especially is enjoying some nice home cooked food as it's a vast improvement on my cooking!! He asked me the other day how long she would keep it up for as he's got used to having nice food at home now! The cheek. Matts mum has also been just brilliant - she's made the boys little blankets for their prams and is a tower of strength for Matthew when things have been hard.

I'm also panicking slightly as we still havent got their room ready. We seem to have so little time to do anything that we haven't even got their cots yet! A lovely friend who I went to school with who I havent seen for years and years and who seems to love the boys even though she's not met them yet very kindly introduced me to her neighbour by email who also has twins. I hadn't even met her in person and she already offered me her twin moses basket stand. So kind of her. She then introduced me to her local twins club and introduced me on email. One of the mums herself had very prem babies and one of hers also came home on O2 so she knows exactly what we're going through. She's lending me her monitor mats so I dont spend the nights watching them to see if they're still breathing! Prem mums have seen their babies stop breathing to the point where you have to give them a shake to remind them to breathe. I think once you've seen that you worry about them taking their next breath for a long time after they come home. This may seem a little neurotic to some people and maybe it is but after everything I've seen I can't help but worry for them. It's so kind of these mums who I've not even met to be giving me things for the boys - people are so generous. I'm amazed at how many people read the blog and ask after the boys. Friends have come all the way to the hospital for a quick coffee just to say hello as they know I sit in the hospital all day myself as visitors arent allowed. I'm so so lucky. I still have no time to reply to texts and emails as even writing this blog is always done at high speed last thing at night with eyes half closed but I want everyone to know how grateful I am for their thoughts, cards, emails and texts. Friends who I've not seen for years or don't keep in touch with too often have sent such lovely cards and messages - friends from abroad and friends from way way back have been so lovely. I'm so grateful and luckly to be surrounded by such lovely friends and family. Thank you all so much. Keep crossing those fingers for my boys - we're getting close now!! The world will see the biggest smile on my face when I bring these baby boys home. Happy tears only from now on.

Joey

 Xander

 Joey

 

Xander

 Joey

 Xander