Rubbish day

We spoke to the doctors yesterday - we were both so nervous. Luckily Matthew did all the talking so I could hide my shakes and swallow any tears. They said that the boys aren't performing as they should be (flash forward to parents evening?!). Everything other than their lungs seems fine for now but their lungs just arent working as they should be for their gestational age. They both seem to be stuck on sipap and we need to get them moving as staying on sipap itself for too long can be harmful. Their plan is to put them on a course of diaretics starting off with a low dose going up to a higher dose if necessary. Then we'll see how they do over the next few weeks and hopefully with this extra time for their lungs to develop and the effect of the diaretics draining fluid from their lungs they should get better and gradually come off sipap. The doctors also told us that the boys wouldnt be going home at their due date of 15th April  - it would most likely be a few weeks after that. If the diaretics dont take effect then we'll have to think about the horrible last resort medicine but there's no point thinking about that now.

We left feeling a mix of emotions - positive that everything else seems to be working ok ie brain, bowels etc (although the doctors are careful to say that this is fine for now and it doesnt mean they wont be different in the future). But really disappointed that the boys werent performing well for their gestational age - I thought all babies their age would be having the same problems but apparently not. The next few weeks will be really important for them and they need to start showing some good signs of improvement.

Today was a tough one. I arrived and Xander was up on a lot of Oxygen. I put my hand on his little back but that seemed to make it worse so left him alone for a bit. The doctors had just done a ward round and the nurse said he's just recovering from being handled so much. They were short on nurses again and the senior nurse had to leave the room for a bit leaving the junior nurse (who looks about 12) in charge. Xanders oxygen requirement was getting higher and higher - more than he's ever been on. Before panicking I changed his nappy incase that was what was bothering him and the child (nurse) changed his mask incase that was upsetting him. Nothing seemed to help and he kept needing more and more. I asked her to please do something as he's never been this bad and she called the doctor in. He changed the pressure on his mask and he came down a little but he was all limp and just not right. I then had a mini break down and couldnt stop the tears. It was quite embarrasing and odd being comforted by the child (nurse) but I couldnt hold it in any longer. The doctors said they would up his dose of diaretics to see if that would help.

Later in the day, I was changing his nappy again when he starting going downhill again - we had to put his oxygen up to 70 and he looked like he was really struggling heaving his shoulders up and down with every breath. My little angel was finding it so hard and I hated every second watching him like that. He opened his eyes for a while and it was like he was looking right at me asking me to help him. I couldnt bear it any more and again, out came the tears. I held his tiny hand and told him how sorry I was that I'd done this to him. Maybe if i'd slowed down when I was pregnant he would still be in my tummy enjoying himself instead of going through this nightmare, I dont think I'll ever get rid of the guilt.

I left the room when the he was having his blood tests and was in the expressing room when an alarm went off in the unit. One that I'd never heard before. I ran outside and asked the nurse if it was the boys - she said it wasnt the twins and to go back in the expressing room. I came out a few minutes later and found out that a mum in a side room had pressed the emergency button as her baby had stopped breathing. I was speaking to his mum in the morning and she was so excited as he was just days from going home. The nurses told me that he just stopped breathing so they resuscitated him. He was ok but was being transfered to another hospital - not sure why but it normally means its not good news. I saw the mum as she was leaving  - poor thing looked so pale and drawn. She must have gone through hell in those few minutes.

Matthew now has a cold so he cant visit the boys incase he gives them an infection and he's gutted as he's managed to see them every day since they were born. Even if its been for 15 minutes at 5.30am before a flight! Luckily he has me to relay all the good news to him! One bit of genuinely good news is that Joseph made a leap from 40% to 25% oxygen which is great. I dont want to get too excited as we've seen him go down before and then he suddenly goes back up so we'll see how long that lasts.

Praying for a better day tomorrow - for all of us!

Joey

 Xander

 A much more beneficial use of hospital tape