Sunday, 15 April 2012

The great outdoors

We didn't get to see Joey's face as the night nurse changed his tubes. I'll make sure we get to see a lot of his little face as soon as he's home.

So this week, we had the oxygen delivered to our house for when the boys come home. We had 18 cannisters! Some travel and some permanent. We've placed them all over the house and they're waiting eagerly to be used!

The boys had a sleep study which went well but it took the doctors a week to get around to reading and analysing it. The sleep study just means their stats are recorded over night and it shows how well they did on that level of O2. By the time the doctors got around to reading it, a week had passed and both boys especially Xander was doing so well and alarming high that I asked for it to be re done on a lower level. They were reluctant but I pushed for it and finally they agreed. They turned xander down by two points - the second sleep study showed that he did very well even for that lower level. Joey will stay where he is. They're reluctant to move their O2 levels now as they're almost ready to come home and want them to be stable for home time. I understand that but it's frustrating when I can see them doing so well and obviously needing less O2 than they're on. The sooner the boys come off the O2, the sooner we can start having a normal life with them.

I had a couple of teary days as the nurses didnt seem to be pushing the boys at all and it seemed like the boys just wouldnt ever feed from the bottle for all their feeds. They're so sleepy and no poking or covering them in kisses would wake them up!

Today however...Xander had his feeding line removed! It was taken out as he needed it changed anyway and the nurse said we could just see how he does. He did 5 in a row! Joey too! If they get too sleepy then it'll have to go back in but i'm hoping thats it now. Come on baby boys...we're all ready for you at home. Please please wake up for your feeds.

Another lovely thing happened today. We took the babies out for the first time! We were allowed to take them for a walk around the hospital grounds and I LOVED it! We had travel Oxygen cannisters in the pram and their sats monitors came with us too. Only the occassional beep beep beep but apart from that it was just amazing. We were like all the other parents you see every day pushing their babies around. I'd like to say that the boys loved it too but they spent the entire time fast asleep! The receptionists who we've seen every day for 3 months were so excited to see them! We're still not allowed visitors and it was just lovely to show them off to people - even if it was just the hospital receptionist! We'll try and get the grand parents to stand outside the hospital next weekend so they can see them. There will be so many tears!

Xander loves his new parrot!

 Joey wanting to get in the photos

 Joey crying and Xander trying to hold his hand!
 Head scans
 Bath time
 The boys are getting a bit big for their cot now..note Xanders foot sticking out the bottom!
 Holding hands

 Ready to go for their walk - first time they've experienced fresh air!
 Matthew would look more excited if he weren't so hungover!

 So tempted to do a runner...

Oxygen waiting for the boys at home!


  1. I was in tears reading this ... so happy ... xx

  2. Yeah for going outside for the first time..FANTASTIC news!!! So happy that the end is so close and going home is such a reality for you now. Enjoy the next week or so getting everything ready for their homecoming. Soooooo excited for you all, I know it's going to be such an emotional time. Take lots of photos so that we can 'live' that moment with you guys!! Lots of love!!

  3. Oh wow! What a fantastic blog. You must be reeling with excitement. What a lvoely feeling it must have been to have been out with your little fox cubs, just the four of you, as it should be. Wonderful news guys. What strong, gorgeous boys you have. I can't wait to see the pics when you bring them home. Have they given you an idea of when? What hopsital are they in? Is it West Middlesex?