Lisa and family have passed on that it’s hard to believe that their tiny bub is 2 months old! They are so appreciative for your emails, calls, and texts - they have a real sense of feeling connected to the world outside the hospital and still part of everyone’s lives. Here’s a little update from Lisa:
Hannah is now such a chilled, peaceful little thing - lots of smiles and coos. She reminds us so much of our other girls when she's awake - very alert, active, strong neck, loves tummy time. She just tires quickly and sleeps more. (An interesting phenomenon for us!) She has milk 'on tap' through her nasal gastric tube. This enables her to sleep through the night. She usually wakes around 4.30AM, in time for her daily weigh in at 5am. I'm actually managing to sleep too and block out the noises of other crying babies, beeping machines and lights. We are in our own room now, it's a bit quieter so we can shut the door and have some privacy.
Each morning a team of cardiologists, nurses and specialists examine and review Hannah and set a daily plan. They have been very pleased. Hannah is stable and settled and the hope now is for little change, except for things that aid her growth, weight gain and development in preparation for the next operation.
The day goes pretty fast, there is always something happening, a test, scan, visit from a therapist and discussion with a specialist. Hannah certainly is a clever girl. The third child is usually bundled up and dragged around with the rest of the family. She worked out how to get all the attention. We have all day to adore her and respond to her cues and needs. She can enjoy the few perks of hospital life. Heated crib means warmed wipes and a long massage after a leisurely bath each night and some fresh linen. We can also now 'unplug' her and go for little walks around the ward. She was also clever enough to avoid Winter in Toowoomba.
My highlight is that she has been back on expressed milk for a few weeks and established oral feeds again. She was given the all clear from her speech therapist and ENT and didn't skip a beat in reestablishing- clever girl.
It is exhausting for her so we started with once a day and built up. Again she was quite clever, and started demanding oral feeds just before her tube feed was due. She has defied the odds again and proved she is an overachiever.
Bailey and the girls are back and forth trying to retain some normality with school and work. He is managing everything beautifully with a little help from all our family and friends.
Bailey brought another esky filled with home cooking from the Toowoomba community. Thank you so much to all those involved! The response is overwhelming. We feel very loved and while we initially resisted the assistance knowing we could manage - it has been awesome to pull out something healthy for an instant dinner or snack.
Thanks again for your prayers and support.