Kaylee is doing well. We are managing her gastroesophageal reflux (tendency to get heartburn and chuck!) with thickened feeds and keeping her tilted upright. We are being reasonably successful with that. It has been discovered that Kaylee has a small cleft in her palate which will need repair sometime after her heart is repaired. It explains some of the issues that Kaylee has had with feeding and knowing about it means we can start managing it so while I am sad that Kaylee will now be having two surgeries before her first birthday, I am happy to know anything that means I can help her better. Kaylee passed her hearing test with flying colours which is great. We will have to keep a close eye on Kaylee's hearing as kids with cleft palates do tend to get fluid build up in their inner ear, but the fact that she is starting out with full hearing is great news. I am getting in place a great support team here in Tassie. We are blessed to live where the waiting lists for help are weeks long rather than months, or even years, like on the mainland. We are hoping to take Kaylee's central line out very soon and head up to Launceston.
Over and above all the health and special needs stuff Kaylee herself is starting to wake up and interact with the world! She is reaching that age where she will crack her eyes open and take a long hard look around. We spend quite some time staring at each other! She is content and peaceful most of the time and loves a snuggle with Mum. We are often found curled up together in an arm chair fast asleep in spite of all the lines and tubes. She makes her nurses lives a little bit boring with few diva tantrums but a whole lot brighter with pink and bows and cuteness. She has become a bit of a favourite I think.
I am doing well. The kids came down yesterday for the second time which is great. Health wise I am fit as a fiddle. It takes a great deal of self discipline to take a nap or go to bed before midnight but that is nothing new. It has been a few years since I willingly went to bed. While I do like sleep, I can always think of a million things I would rather be doing. The kids are thrilled with their new sister and now know all about her various machines etc. We play the "glad and sad" game where we think of one thing that we are glad of and one thing that makes us sad. This gives them a chance to talk about all the big and complex feelings that go along with what we are going through as a family. We are working hard to make sure that their needs are cared for as well as Kaylee's.
We are now looking toward a homecoming. We have no idea when that will be as it is entirely dependent on how Kaylee's feeding goes. Thankfully we have many people who are helping us work out the various logistics of running our home once we are all together again. Caring for Kaylee outside a hospital environment is becoming less scary as she gets bigger and stronger and I get more confident.
Thank you all for your prayers and words of encouragement.
We can't wait to be home!