Heidi tipped the scales last night at 1030g!!!!!! Yay for the 1kg milestone. What a fatty!!! So that means she's put on a quarter of her original birthweight. And her central line did come out today so she's exclusively on EBM now.
We took DPs brother & wife in to see her tonight, they we just amazed and so happy to meet her. I stayed in the family room with DS and their little girl - somehow I've managed to lose my voice and get a bit throaty so I'm staying at arms length for a couple of days which is very hard. Gives me an excuse to rest up at home - DP had today off and will tomorrow as well, so he's got DS under control while I catch up on some much needed sleep in between expressing. He's my rock right now I don't know where I'd be without him.
Oh wow! I remember well how excited I was when Immy reached the kilo mark - such a wonderful milestone! Big cuddles darling Mama - you're doing so well.
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.
i can't even imagine what you've been dealing with Hun. just letting you know i'm thinking of you both,you have a little fighter there,
I hope you get better asap so you can see your beautiful girl again must be so so hard but your such a strong women
Oh Infinity , I can only imagine how scary that must have been for you to see such a big change over a short amount of time
Hopefully the weight gain and strength she has gained over the past couple of weeks with your amazing EBM will give her the extra strength she will use to get past this infection. Her Paed team sound really on the ball and doing everything to take the pressure off her and give her the best fighting chance, and she will fight, she already fought so much to come earthside, she will fight to be back in the arms of her Mummy and Daddy.
Gathering all the strength, courage and get well vibes I can and sending them right to Miss Heidi
I wish I could give an IRL hug right now
and you're doing a great job with supply of EBM.
1kg!!!! YAY!!!! What a fabulous weight, a real little chubba 
I hope she gets well asap 
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