Ventilator be gone

Amys tiny little lungs just wont get better. The ventilator is preventing them from growing and healing but she needs it to stay alive. . Looks like the only option we have is to give her steroid. Its not straight forward though, as with everything there are side effects. No point dwelling on them too much though she has to have them. We are sick with worry wondering the effect our decision will have on our daughter. I pay her a visit that afternoon and as I’m sitting beside her incubator looking her she turns her head looks directly in my eye and pulls her ventilator. I can see the pain shes in. She has been very uncomfortable and restless recently. My heart breaks. I’d do anything at that moment to take away her pain. I head back up to the ward and cry into my pillow. I cant wait til the steroids now.

I’ve been here three weeks already and I’m actually getting used to it. I know all the nurses here and the midwifes call over from the labour ward to check up on me. Everyone is so wonderful. Katie is growing at a great rate, she is being constantly monitored too. The day of the steroids finally come, they work a treat!! Finally after 24 days of being ventilated Amy is on CPAP, (oxygen delivered through the nasal passage). Sometimes the little babies cant cope and need the ventilator back hopefully this wont be the case. I’ve been visiting neo as usual and she looks so different now.

The next issue. .

So coming to terms with the bleeds on the brain and feel better now I understand the ins and outs of it. Amys a very active little girls and has to be sediated to keep her calm, I swear she wants out of the incubator and wants to play !! At this time she is still on the ventilator and she hates it but its keeping her alive. She has cronic lung and her little lungs cant heal while still on the ventilator but shes not strong enough to come off it. AMys consultant calls up to speak to me, I’m having dinner and I nearly choke, I can feel the blood drain from my face, I start to shake. It feels like he is standing there for ages before he speaks but in fact its only a second or two. He starts by saying Amys fine, my face obviously says it all. We need to look at options for her coming off the ventilator.

The bumps in the road start to show.

First off apologies for lack of updates my big babies started back in school and it took me this long to get my backside in gear!

 

The minutes roll into the hours which roll into long days and lonely nights. I tell people not to visit I’m not up to it but to be honest I hate seeing worried faces staring at me not knowing what to say. I still manage to keep positive though. I have finally been able to read some of the booklet we were given from neo natal. Its harsh and I tell myself we are going to have to deal with everything in this, I feel maybe if I’m prepared it wont be as bad if something happens, again I’m terrifed of getting a fright body going into shock and Katie arriving. Amys doing good we are a few weeks in now and she hasnt done anything to cause too much concern. Weight gain is poor but in fairness the baby is trying to stay alive so give her a chance, this is a marathon not a sprint. Hubby and the kids call in. The kids share their school reports with me while dad goes down stairs to have a chat with Amy. The kids are going through each of the good comments beaming with pride. Its so good to see them smile again. Hubby comes back too soon and he is grey in the face…. I know its not good… Shes had a bleed on her brain he blurts out.. OH GOD this is the start of it, and you know what no amount of reading prepares you for it. I’m sick. I ask him a hundred questions there and then, none of which he can answer. When they leave I head down to see whats happening. She looks the very same, and why wouldnt she its internal, just didnt know what to expect. These bleeds are graded and hers is between a 2 and a 3 it goes to 5 which is most severe. Of course I want it fixed  and I want it done now. Nothing can be done I’m told, we have to wait and see what effect it has on her. Ah shite more waiting!!!!!!!