Well after a few weeks of stellar progress, little miss Heidi has hit her first major hurdle and its a big one. We're back on a knife-edge ATM, she has developed a very serious infection in her bowel....it has a big long name that sounds awful and is something that NICU units fear with tiny little prems like DD. Since their guts tend to be a bit slower than a full-term bub, it leads to more opportunity for the gut contents to brew and ferment away creating a nice haven for bacteria to live. The bacteria damage the bowel and it gets 'sick' and sort of goes on strike if you like. So her poor little tummy is very large and distended as if all the air and contents are stuck. At its worst, the condition can perforate the wall of the bowel. Sometimes this can be isolated to a small portion of the bowel and can be helped with surgery. If it starts to destroy more of the bowel as it progresses the condition can be fatal.

Monday night her tummy blew up and they stopped her feeds and commenced xrays regularly to monitor for any perforations. So far her xrays have been clear which is a good sign. She's having them every 8 hours. This morning she has a small amount of blood in some poo which is another trademark sign of the condition. She is being treated with antibiotics and won't commence EBM feeds again for another 10-14 days depending on how she responds. Today they escalated treatment with a few things as 'just in case' measures. She has been intubated (put back on the ventilator) to help her conserve energy and rest her lungs, and its also there is she has a major crash at any stage. She has also had her central line replaced and IVs in what seems like every little limb. They're trying to establish an arterial line but are having some trouble with that one. Today they had to gain access for the central line in her head which just broke my heart. Just through a vein on the surface of her scalp. She is receiving morphine for any pain that she's in so she's very sedated but the aim is to have her as comfortable as possible to conserve her energy and to support her while she fights the infection. So my poor little girl is very very sick right now and we just don't know which way things are going to go. There is every chance she'll recover and the condition won't progress to any bowel damage. There is also every chance that it will - and we have no control over any of it. We just have to hope.

This all happened after I'd spent 48 hours away from her due to the cold I had so its been a major shock to the system and so so hard to deal with. She is very unwell. I'm a mess. We just keep hanging on the next phone call or test or xray to see if things are getting better or getting worse. The doctors are doing everything possible to get her better so we can only go forward with the knowledge that she's got the best treatment and support behind her. Still doesn't make it much easier to see her so sick and having so many nasty procedures. Only a few days ago she was so lively and well. We're hoping to know more about how she responds in the next 72 hours. The paediatric surgeon came to see her today just in case, and they're hopeful we won't have to talk to them again - so am I.

I'm exhuasted. Physically and emotionally. I'm sleeping with one eye and one ear open all the time (like most mums I know). I'm missing contact with her so terribly. I know that sounds so selfish but cuddles with her and being able to help look after her was such a lifeline for me. DP & I are trying to hold it together but struggling a bit. I don't feel like we ever got complacent - we always knew that something could happen - its not until it slaps you in the face that you come back to the reality of it all and realise that she could be taken from us in a whisker.

I'll do my best to pop in and update - send her lots of strength and get well vibes if you have any left to spare.