Another full and crazy day yesterday. There are times I feel like I am directing a big stage production. I was sad to say goodbye to my amazing team in Melbourne. It is sometimes scary taking the next step toward normalcy. Leaving behind the comfort of hourly obs by nurses who specialise in cardio affected babies, lactation consultants who work with NG tubes and syndrome affected babies and cardio affected babies every day, my pit crew chief and fabulous Melbourneites (move to Tassie people!), various support workers who are vivacious, funny, kind, wise, compassionate, knowledgeable or all of the above; friends with whom I have laughed and cried at all hours of the day and night as they helped me care for my baby. And my other friends into whose hands I pressed my contact details with promises that one day we would watch our babies play together while we drink coffee, not an alarm in ear-shot. I am not a crier, but tears welled up in my eyes as I wondered if their babies would make it that far.
But I am taking a step toward home.
It often takes me a little while to warm to a new nurse or doctor but I have found that if you treat them like a super star they often rise to the occasion. There are few people who work in the care of very sick babies who are completely without compassion and humanity. The staff here in Hobart do seem to be rising to the occasion and the doctor who transported Kaylee to Melbourne was on duty last night. She IS a super star!
For now I am in Ronald McDonald house which is lovely (and paid for by the government!) but in five days, depending on what goes on with other families in the house, I may need to find other accommodation. Please pray that I will either be able to stay here. I have a friend who lives close by but Ronald McDonald house does provide me with a breast pump and it is directly accross from the hospital. Plus it has a fantastic playroom for my children to use when they visit me.
I held my husband and children last night. I took them all in to see Kaylee in dribs and drabs. They each sat in the arm chair while I held her out to them to be touched, hugged and kissed with hardly any tubes or wires. Our time together last night was late, rushed and far too short but thanks to the generosity of friends willing to open their home, I got see my family today too. Spending time with the children was wonderful and painful. It reminds me of all that I am missing. It reminds me how forever changed we all are. Each time a child is added to our family, the relationships change. In adoption circles they refer to it as the family "constellation". The addition of another star to an astrological constellation causes all the other stars to change the way they relate to each other slightly due to shifts in gravitational forces. What we have been through in the last two weeks has caused all of us to change and shift. It is like there was a massive supernova in the middle of our family constellation. The children's lives have been forever changed. I am forever changed. I don't want to growl at them EVER again - but sometimes growling is my job. I am brittle in places I was previously strong and strong in places I was previously weak. The few moments I got to snatch with Jon resulted in tear stains on his shirt. I am amazed by him and his strength. We have discovered that we have been both listening to the same album since all this started. An album I downloaded for free by Josh Garrels. Track 3 has been speaking to both our hearts. It is our 11th anniversary tomorrow and it has shown to be 11 years well spent. He is my hero. We went to the Botanical Gardens and spent time together. Kaylee was constantly on all our hearts and I wished passionately that she was nestled in a sling against my chest as we wandered around and talked about the flowers. I am constantly torn.
Kaylee herself is doing well. Her breathing has been pretty good since we got here. She really only de-sats (looses oxygen saturation in her blood) when she is annoyed or upset. The typical Kaylee Princess act where she holds her breath until she gets what she wants - and frankly, at this point, I do whatever I can to get her whatever she wants, when she wants it! She has gastro-oesophageal reflux disease (GORD) which causes her occasional discomfort (bad heartburn, occasional vomiting) but she is in a bed that is tilted up, her magic milk has been thickened so it stays in her tummy better and she is taking medication to help - the same medication that her Daddy takes actually! She is still attempting to feed and doing lots of things with her mouth. My goal is to keep her interested in doing things orally so that when it comes time for her to eat solids, she won't be reluctant after having been tube fed for all of her life. Also I want her to use her mouth often to exercise the muscles she will use for talking and experience the closeness and cuddles of breastfeeding. Any nutrition she takes in orally is an added bonus. I wish I could physically be with Kaylee constantly like I was with all my other babies but at this point it simply isn't practical so we do the best we can. Milk volume is not an issue any more with me expressing 600-700mls per day - far more than Kaylee actually drinks. We are stockpiling in the freezer!
I am exhausted tonight and I miss my babies and my husband. But I am a step closer to home, and that is something.