Is that a grey hair?

No not yet…but I seriously think, that if I escape and survive this NICU thing without a grey hair, extra kilo or two and a face that looks like Mrs Twit it will be a miracle. A miracle like Lily. Mr T is already going grey, so he’s all out of luck in that department, he’s lucky he’s already got good looks and a svelte figure capable of consuming large amounts of chocolate, carbs and delicious delights without consequence, so I think he’ll be ok.  Lily seems to handle her setbacks and near misses a lot better than we do, simply fixed with a good rest and a sleep afterwards. No amount of sleep at the moment could fix the permanent heavy cloud that hangs over our heads, on the other hand I have thought how nice it would be to hibernate under my doona for the next few months…and wake up when it’s all over.

Tough one this week. Lily has been having lots of trouble with her breathing, due to the infection she had when she was born. It’s made everything that extra bit harder for her. She is also developing what they call chronic lung disease (sounds terrible) because of all the ventilation and oxygen she has required over the last three weeks. The lifesaving treatment she is receiving which she cannot live without, is also causing her harm, with scar tissue beginning to form on her lungs. In this case the positives of the ventilation outweigh the negatives. Lungs however continue to grow and develop until 6-7 years of age, so it is hoped that in that period of time Lily’s lungs would be able to repair themselves and resolve any respiratory illness she faces.

I had been doing really well this week with Mr T back at work…until yesterday at the mention of this next issue. The tears welled in my eyes, and the lump in my throat came back. Poor Lily, such a long way for her to go. I just wanted to pick her up and make her better, but I can’t do either. There is no comfort in the situation, and as much as you worry, the worry doesn’t make any of it better either; what will be, will be. Just as before there are still no certainties as we watch and wait for Lily to do her thing and decide what she will do. All that is left is to believe that she knows what she is doing, and trust her to be strong.

Another reality hit me yesterday too; Lily’s journey will not be over when she comes home…the life of a micro-premmie is fragile for a long while, well into childhood. With the lung issue she is developing, she may remain on oxygen after she comes home, and cold and flu season will be horrid. Home will probably be on lock down, as any risk of infection to Lily could cause serious respiratory issues that put her back in hospital. This all seems like the worst case scenario stuff, and it is…but that is what struck me yesterday, our little girl may well have long term issues beyond NICU that I hadn’t thought of yet. I hadn’t stopped to think too much about the future, having been so focused on the present. A little naïve perhaps, but I had initially thought that once she got through her first couple of weeks, things would get easier, not harder. With her increasing size and the effects of treatments on her tiny body, the underlying problems are becoming more medically significant and apparent for her.

That was yesterday morning…little did we know Lily had other plans for yesterday too. In between me leaving at about 12:30 and our return for Daddy’s evening visit at 6. Lily had been up to mischief. She decided to dislodge her own breathing tube, causing her heart rate to drop dramatically and the tube needing to be reinserted promptly by doctors, with some extra oxygen while they reintubated her…again. That makes 3 intubations in 48 hours.

The very kind night nurse must have seen the total look of despair and defeat on our faces last night as we sat next to Lily. After only three weeks in NICU the tiredness and complete emotional and physical exhaustion has begun to set in, and I guess our faces showed it. She introduced us to the Mother and Baby in spot 1 of our bay who was born at 23 weeks. Her little girl is nearly one year old, big and strong! There is plenty of hope for Lily girl!

Having a rest from my visit this morning, and saving myself up for a visit with Jerry tonight.

Hope she’s a good girl today….please Lily, with a cherry on top?