She's doing alright, we have good and bad days, like any other baby. Her lungs seem to be much stronger but she still requires the oxygen for a bit of a boost. She spent a few days in hospital the week before last to have tests done trying to figure out what's causing all this excess mucus that she's struggling with. Unfortunately, they didn't find the cause of the mucus but on a positive note, it looks like her lung has reinflated nicely and she appears to be breathing a lot more comfortably now. Hopefully when she stops struggling with this mucus, she should be able to come off the oxygen. It could just be the tube down her throat that causing her mucus - anyone's guess at this stage!
She's getting clever now - starting to kick u a bit when she feels like it. Not often but boy, they learn pretty fast how soft the parents are. We are trying to harden up, but its bloomin hard!
Our biggest issue continues to be feeding. She has gotten used to wearing the splints all the time and she's starting to get quite good at all her stretches and exercises. However, when it comes to feeding, a lot of distraction is needed!!! She still only tolerates a small amount in her mouth before gagging. We are totally reliant on her nasal gastic tube to give her 99% of her feed. We dont think this is necessarily related to Escobars Syndrome, it is most likely because of the fact that she couldn't feed for so long in the hospital because of the incumbersome oxygen device she was on, so she never learned how to feed properly. In addition, most of the time that she was in hospital, she was being suctioned daily down her nose and in her mouth to get rid of excess secretions. As a result, she's very screamish about her face and has negative associations with both her nose and her mouth. Its so difficult to break this, though we're trying very very hard and getting fantastic help from medical staff (who have been amazing).
So if you get a chance to say a wee prayer for our litle munchkin, please direct it to her feeding! We would really appreciate it.
Ger's parents are arriving in a few days from Ireland to meet their first grand-child (though there's another gorgeous one since). They will be staying with us for a month and Ashling will be going on her first holiday (to Taupo and Roturua) while they are around. Woo Hoo.
Lots of love xxxx
