Day 98 – Monday February 16th 2009

Monday’s are always a busy day with lots of activity.  Today Eva had an echocardiogram, an ultrasound scan of the heart, as part of a training day.  They were just using her as practice.  Her first Echo was in her first week of life.  I really don’t know how they did it when she was so small.  All was well and it seems the PDA (hole in her heart from birth) has closed which we had already presumed.

We have realised that of course Eva’s discharge plans are all up to God and Eva.  I think that Andrew and I fell into the trap of thinking that as we made a step towards normalisation we had more control.  Actually we have none and just have to wait until Eva is ready.  Today I made a real effort not to ask the medical staff for any dates and plans.  Perhaps we have been too busy trying to map out the stay and forgetting that it is all down to Eva really.  Andrew is in a tricky situation where he has a couple of work travel commitments in the next 2 weeks and not knowing when Eva is coming home is making it difficult to plan cover for these if Eva comes home during this time.   

Today Dr Laura came back.  She was very apologetic that she joked 2 weeks ago that she didn’t want us to leave and we haven’t!  Laura is happy with Eva’s progress and can of course see a big change in her size.  We are all looking forward to the weigh day tomorrow to see an increase and the hot cot removed. 

Eva seems to be feeding really well today.  I discussed with one of the community nurses expressing off some of the first breast milk, which is thought to be thinner and less fatty.  The idea then is that Eva eats richer milk straight away.  Anything to assist with the acceleration of weight gain.

Eva had bloods today again to check the medication doses are correct. I am starting to feel better about the medications.  Laura says Eva does not need to be woken up during the night instead I can spread them through the day hours.  Today Eva took the Sodium Phosphate for her bones in a syringe with milk with very little spillage.  I am pleased that this seems to be the answer for now until she learns to spit it out. 

In the Nursery today there was a baby next to Eva that was smaller!  I was excited that Eva was actually bigger than someone.

Katja, the Family Support Worker, came to visit today.  She asked if she could have a cuddle as she never gets to cuddle the babies in SCBU.  Katja said that a cuddle with Eva made her day.

Most people that I see say to me “You’re still here!”.  I am really conscious of how long our stay has been.  Every day I watch people arrive with a car seat and take their babies home.  Of course I am very jealous of these families.  

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