Day 51: The days use to feel so long, sitting by one incubator, then the next, back to the first and so forth. Those days were filled with worry, anxiety, hand holding, watching and reading... but each day felt like it might never end and that was hard. Now time is hard but in a different way, I still feel like this journey (or nightmarish hell) might never end and the worry and anxiety is still ever present but now the individual days seem faster. I feel like there isnt enough time with hand holding, kangaroo cuddles, nappy changes, abbys hat off time, baths, expressing, breast contact, tube feeds, reading and abbys prong watch (trying to stop her from pulling them out!) I always feel like as soon as one task is complete its already time for another task to begin. We leave around 7:30-8pm (sometimes much later) but I always feel like I need to stay longer, like it hasnt been enough time for the day and I dont want to miss anything.... I guess that is all quite normal in this very not normal situation. Today was a better day than yesterday with a few little hiccups included of course. Abigail spent most of the day in 40% oxygen again, she had a few periods of increased work of breathing but overall was fairly settled with her breathing. Her cpap remained on 8. Abby spent a fair amount of time today fighting with her prongs to the point she had some fresh trauma (bleeding) to her nose which again puts her at risk of developing another infection. I dont blame her for hating the prongs and head gear although I wish she wouldnt fight it so much. Abigail handled her cares so well today that she also managed to have her very first full bed bath including a hair wash! She looked adorable and smelt so fresh for her mummy cuddles. Unfortunately we dont have any photos of the event as ash was at work at the time. The diuretics have taken too much potassium and sodium from Abby so she has been commenced on suppliments and the drs are keeping an eye on her. Today Abigail did not have any great improvements but she did not deteriorate either, that makes today a great day. Aiden was much more settled today with his work of breathing, he still worked a little during his breast feed attempt but id say thats ok given the huge effort trying to bf is for a teeny baby. So we have avoided high flow for over a week now! Aiden does still have brady/desat/apnoeas with his feeds and sometimes requires stimulation as a reminder to breathe. Aiden wad quite alert again this evening so we took advantage of this and gave him a bath (which he loved!). We also noted that he was due a weigh tonight so rather than over handle him we did his weigh with his bath. Our little monkey man weighs exactly 2.5kgs! Tomorrow is the start of a new week, in this coming week the twins will be 35 weeks and 8 weeks old... but lets just focus on tomorrow for now.
Posted on: Sun, 02 Nov 2014 13:58:36 +0000
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