1 week & 1 day old

Today was a struggle.

We arrived as usual to see Holly today, around 9.30am, and went in to her room. There are a few other babies in the same room as Holly, all in incubators and needing special care, some nearly as tiny as Holly and some full term but unwell babies. Every morning the doctors do the "ward rounds" which is where they see every baby and listen to their heart and lungs and generally see how well they're doing and give their orders as to what to change that day or whether to keep things the same for another long day. We had been told this always happens between 10am and 1pm but by the time we arrived they had already done Holly and were checking the other babies, and you can't be in the room when they're discussing other babies for confidentiality reasons, so we had only just got there and were being asked to leave with out even saying good morning to Holly bear (my nickname for her!) we sat in the waiting room as we were told and they said that they would come and let us know when they were done, but as you can imagine they are very busy as all the nurses have more than one baby to look after, so no one came to tell us that we could go back and see our baby girl until we got agitated and went to check for our selves.

When Holly's nurse arrived (Rachel) we asked how Holly had been over night (we had rang first thing in the morning and been given a brief summary of her night) and she told us that her gases, which are things like her oxygen level and c02 out put, weren't as good as they would like so she has had to have her oxygen support levels increased. This was so difficult as it was the first time she has taken a step backwards, they kept telling us that she will take 3 steps forward and 2 steps backwards, and her oxygen will go up and down and her ventilator will come on and off during her battle to be healthy, but she had been doing so consistantly well that I had decided in my silly mind (as appose to my sane and rational one) that she would be the first preterm baby in medical history to be able to come home at 24 weeks..... this is obviously never going to happen and I knew that really, but I had been dreaming that a miracle would happen so the news of a step backward just broke my heart all over again.

We did have some good news this morning as well, they couldn't hear the murmur in her heart, this doesn't  mean that is gone completely but its fantastic news and it maybe that its closing or closed completely, but they have to keep and eye on it for now and will have a more concrete answer in a few days time hope fully. She also came off her insulin this morning as her blood sugar levels had gone back down, which was also brilliant - another step forward! How ever, by the afternoon she had to have a little bit of insulin again as her levels were creeping back up - half a step backwards. Her blood transfusion that they did yesterday went well and she is also off her course of antibiotics now, so this is all good news too. The fact that her oxygen assistance has gone up is something that I am fixated with for some reason, I desperately want her to be able to breathe on her own..... well the next step is for her to come off the ventilator and have a little mask around her mouth which will give her help to stop her lungs deflating completely when she breathes out.....I want to be able to see her beautiful little face with out the tube but more than that, it will be a big sign that she is getting stronger and one step closer to being at home with Matt and I.

She is also having a tiny amount off my breast milk, 1.5ml every hour (she started off on 0.5ml every 2 hours) and this will keep increasing until she is able to "tolerate" enough milk to give her the nutrition she needs to grow big and strong and will be able to have one more tube out of her, which will be amazing because every tube inside her increases the likelihood that she will get an infection, so we want as many tubes to come out as quickly as possible as every time she gets an infection means she takes a step back wards and makes her life just that little bit more of a struggle for her.

We got to change her nappy again today, and whilst we were doing that the nurse changed her sheet which meant that Matt got to pick her up and have her tiny body in his hands.... she could fit quite easily into the palm of one of his hands but you have to lift her up in a certain way due to the tubes and wires and of course she cant come out of the incubator but he still got to have her laying in his hands, her little bum in one hand and her tiny head in the other. It was lovely to see Matt holding her and he was so happy to be able to feel her skin against his, but it only lasts a few seconds as she has to have her breathing tube disconnected so it has to be as quick as possible. I will try and take a photo next time this happens as I want to have memories to show little Holly of the first times we held her, and changed her, and hopefully soon, cuddle and kiss her.

Thank you to every one who is thinking of Holly, it means a lot to Matt and I that you are all thinking of us and wishing Holly a long, healthy and happy life. and thank you so much for all the cards we have been sent to celebrate our little girl coming into the world, even if wasn't they way it was originally planned, it is still an amazing thing and definitely something worth celebrating! I feel as though every day is her birthday and deserves a celebration, every minute we get to spend with her is a blessing and something that will never be taken for granted. It is so difficult to leave her side at night, and if it wasn't for the fact that I'm scared that if I don't get any sleep I will catch a cold and not be able to visit then I would sit by her little incubator, holding her tiny hand 24hrs a day.

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