Day 37: Where the babies go beep beep beep. Every day brings its own set of challenges, goals, milestones and emotions. Today was a little bit of a mixed bag and another one of those roller coaster days (we knew we couldn’t have uneventful days always – even if it would be nice to!) We began the day with the usual excitement and anticipation weigh day brings and again were pleased with the >100g each of our little cherubs put on (and boy can you see the gain now in their chubby and adorable little frames and faces). The excitement however was short lived. Abigail did not improve overnight and our night nurse felt that her condition was actually deteriorating from previous nights so had the Paeds around to review her. Abby had not been below 40% oxygen overnight and required up to 50% or more with any handling. As I said in this mornings update, the Paeds increased her CPAP to 7 and ordered bloods, the results showed no infection but a low hb (ability to carry oxygen around the body). This morning the paeds ordered a blood transfusion and a chest x ray to make sure there was no sign of a viral infection (that can be missed on bloods apparently). Abigail had another cannula inserted and was commenced on 40mls of PRBC (red blood cells) over 4hrs, she continued to work with her breathing today and remained in around 40% oxygen all day despite the increase in CPAP and blood. She did however change to a much nicer shade of pink after the transfusion. Abigails x ray excluded any infection however it did show that there was again a slight collapse in her lungs that hopefully the CPAP 7 will help with. I feel like my little princess is never going to get off her CPAP and sometimes it is so hard to watch her fight and get cranky every time the prongs have to go back in. Due to Abby being fragile again today we were not able to cuddle her however I did get a cheeky 1 minute cuddle when I held her up so her linen could again be changed (she really likes messing all of her bedding!) It was nice to hold her, even if only for a little while as it is starting to feel like forever and it fills me with such sadness to not be able to share that closeness with my darling girl. Both of our little munchkins had their feeds increased to 42mls every 3hrs today (due to weight gain) and both had desats with their increased feeds, Aiden also kept pushing around a quarter of his feeds back up his feeding tube. Aiden enjoyed a Daddy cuddle a little too much and forgot the breathe for a little bit resulting in another dusky episode followed by some very loud alarming from the monitors. Twice today he required stimulation for his A&B’s and desats, most of the time he was self-recovering though. Aiden had longer periods of awake time today, he is so incredibly alert when he is awake. He looks around and sucks his dummy. He moves his head around and uses his arms to remove his nasal prongs. He also makes little noises and sometimes they even sound like responses, we can’t help but smile or laugh at some of his “responses” (there needs to be some comic relief sometimes). We continued with our usual routine of humming, reading, lightly touching Abigail, Aiden having a cuddle, attending to their cares (when the nurse wasn’t trying to take over!) and being involved as much as we could. It doesn’t always help though. We won’t ever feel like it’s enough until they are home. We try to advocate for our babies, we try to do all we can (and we know we do far more than a lot of other parents – we see it every day) however the truth is (well at least for me) it doesn’t feel like parenting yet. I feel like I need to ask permission to touch my children (and sometimes I do as occasionally I’m told that I can not hold them) and every night, leaving just gets that little bit harder.
Posted on: Sun, 19 Oct 2014 12:36:31 +0000
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