Monday, 19 March 2012

Rocky road...again.

On Wednesday the boys were 2 months old.  Matthew called from the hospital in the evening with some amazing news...the boys were moved out of intensive care!! They moved to the room next door - now called the Green room. The boys are still needing the Oxygen but the doctors decided they're not critical anymore. This was the best news we've had in a long long time and there were a lot of tears from us and our families too. Progress at last! I loved walking into the green room on Thursday morning to see my boys new home. The other mums in the room are a little less stressed out and it's much calmer so I already feel more relaxed. The boys are still alarming high and then low quite a bit (totally disturbing the other mums peace and quiet!) but the doctors say it'll just take time for their lungs to grow and grow. They may well come home on Oxygen anyway.

Our sighs of relief weren't long lived though. On Friday the doctor wanted to speak to me about Xanders eyes. We went into the parents room and I braced myself as I knew it was going to be something serious. Every two weeks the boys have eye tests. Any premature baby is at risk of developing ROP. This happens when they're exposed to large amounts of Oxygen. ROP when not treated can lead to blindness so it's not something you ever want to have to deal with. So far the boys had been fine but Dr Richard very calmly said that he had seen mild ROP in Xanders right eye. I immediately obviously wanted to cry but held it in and said "Ok, thank you" trying to wrap up the conversation so he'd leave the room and I could be left alone to sob! He didn't leave and instead gently explained a little bit about ROP and that it was a good thing that it was mild and that Xander will be tested again on Tuesday to see if it's developed. It can sometimes resolve itself or stay mild or get worse. If it's got worse then he'll have laser therapy or surgery at Tommys hospital. ROP mostly only develops further up to 36 weeks so they're all hopeful that it wont have got too much worse as they're now 36 weeks.  I managed to hold in the tears until the car where I called Matthew and told him everything.  We're both going in to hospital tomorrow morning to await the results. I dont think we'll actually take a proper breath until we get the results. We're both trying to be positive about it but it's in our minds all the time.

On a selfish level, it feels like another kick in the teeth. Just as we celebrate moving out of intensive care, there's another blow. It's relentless - this rocky road had better be coming to an end soon as I'm not sure I can maintain this high level of stress!

Matthew is amazing and deals with my mood swings brilliantly! He gave me such a lovely card for mothers day as well as some lovely presents. I had a lovely cuddle with both of them and Matthew did the nappies. I'm a lucky mum to have such beautiful baby boys, love them with all my heart.

Joey and his bottle

 Boys sharing a cot!
 Joey spotting Xander in his bed!

 Bath time
 Mothers day card made by the nurses



  1. gosh Sophie ... you are so brave to be so open to share this with us all and give such an insight into the emotional roller coaster of loving such wonderful and precious little boys ... I'll be thinking of you on Tuesday and am always so touched by the vulnerability you share with us - brings so much into perspective ... love Patricia

  2. Hi honey. Let's keep all crossed for tomorrow. I will be thinking of you! The boys look so blissful together in their new surroundings. The photoes show how big they are getting. All such positive steps. Come on Xander, you show them!! Xx