Hi,
The last few days have been a whirlwind of emotions, tests, information and enough tears to fill an ocean.
The nursing team at the Rosie have been amazing and a wonderful source of strength, they constantly remind us to take everything one day at a time and to cherish each moment we have and to hold those memories close to give us strength.
We have been able to spend more and more time with Aiden, to start with it was very difficult to spend more than 15 minutes at a time at his incubator as the machines and beeps are scary and as we have little understanding of what they mean we found them hard to cope with but slowly we are learning to deal with the monitors, beeps and flashing lights and have learnt that if the nurses don’t come running over, we don’t panic.
The nurses have encouraged us to get involved in his care, so now we know how to clean his mouth when the respiratory tubes bubble and make him dribble, we have changed a couple of nappies which sounds easy but when the baby is connected to lots of wires it isn’t as easy as it seems.
Sometimes when we are not with Aiden we wander the hospital corridors, on one walk we came across the chapel and decided to listen to the service taking place, after, we spoke to the reverend and they offered to spend some time with Aiden and preform a blessing for him and produced a lovely little book personalised to Aiden and us, we are constantly overwhelmed by the love and support we all receive from friends, family and strangers who we have never met before, the experience has been very humbling.
We very much want to give back to the Rosie and one of the ways of doing this was to agree to Aiden being used in a research project, where the baby wears a hat which has many sensors attached, these sensors record blood flow and electrical brain activity, the results are added to a database and used to understand how to better identify ways to treat seizures in babies and those with the same the condition as Aiden. We are now calling Aiden a pioneer as he was the first full term baby to be treated using the ice jacket since commencing the research, we realise that if past research hadn’t gone into the ice jacket that Aiden wore our situation could be very different and if this research can help even just one other baby it’s very worthwhile.
Aiden has made progress since being at the Rosie, the ice jacket was removed after 72 hours and Aiden has been warmed to a normal body temperature. We were concerned the warming might trigger further seizures but Aiden seems to have coped with this well, it’s lovely to see him without the jacket and feeling warm and looking pink like a regular baby.
The next huddle to jump was getting Aiden off his breathing respirator, after numerous failed attempts over several days Aiden finally managed to have the tube removed and is now happily coping on CPAP (continuous positive airway pressure), this was a huge relief for us and we’re so proud of the progress Aiden has made, we are aware that he may need to have the respirator re-inserted if he begins to get tired or struggle, however at present he is maintaining his breathing himself and is coping incredibly well.
Aiden is now being feed expressed milk through a tube inserted in his nose down to this tummy and is digesting this well, this will provide him with all the nutrients and proteins he needs, before this he was just being feed a glucose feed to maintain his calories.
Love, Fleur and Keith
