Kaylee is doing everything she should and nothing she shouldn't.
Her feeds have gone up to 25ml per hour over 22 hours which gives us three hours a day disconnected from the feed pump which is awesome. I have a love-hate relationship with the feed pump and breast pump. Kaylee spends 22 hours a day hooked up to a pump, I spend 6-8 hours a day hooked up to a pump. We're all about the pumping! I love that we can feed her this easily - not so long ago Kaylee would have had to stay in hospital until after she got over needing continuous feeds because she would have had to have a nurse sitting by her bedside 24 hours a day pushing in her feed. I love that my milk is going in to Kaylee and that it is helping and protecting her. Right now it is all Mama milk with no alterations. It is sort of like having a really close friendship via e-mail. I am constantly swirling her bag and poking it so as much cream as possible will go down the tube rather than stick to the inside of the bag. We have worked out how to hang feed in the car and my breast pump also plugs into the lighter socket in the car which makes us fully portable.
I put her to my breast about twice a day for some 'oral play' so she can pretend to feed. This helps her mouth muscles to keep working and helps her associate good and happy things with having things in her mouth. Many kids who are exclusively tube fed develop oral aversions where they hate anything going in or near their mouth. This gets to be a bit of a problem when it comes time for them to actually start eating. I have a vague hope that perhaps after her surgeries she may start to feed direct for at least some of her food intake but it's a long shot and we will have to see how we go. Seeing as Kaylee is being constantly fed she never feels hungry. This means she sleeps a lot with no hunger pangs to wake her for feeds and cuddles. I make the decision several times a day to let her sleep (which she needs in order to grow and get big enough for her surgeries) or wake her for cuddles and play (which she needs for cognitive and physical stimulation and development). I check her tube about twenty times a day to make sure it hasn't moved and I tend to fret about it first if she is upset for an extended period which is silly because it doesn't hurt her and is unlikely to move unless someone moves it. But a tube is a tube and while we are positively minimalist in the tube department compared to the last couple of months it is a yellow reminder lying across her face every time I look at her of the road we have travelled and some of the big hills (known and unknown) that are yet to come.
Kaylee herself is delightful. Her eyelashes go on FOREVER! She found her hand last night and I spent a good ten minutes or more just sitting watching her watch her hand. Her brothers and sisters adore her and it is rare that she isn't the centre of someone's attention. She is still in size 00000 clothes but there is one garment that she has grown out of. She is quite the fashionista and the big kids love to choose her hair clips and clothes whenever they are allowed. I would swear that sometimes she is smiling although it is hard to tell because the corners of her mouth naturally turn down and often when I think she's smiling she has her dummy in her mouth. She also farts like a champ much to the delight of her brothers.
The bigger kids are wonderful. We did a science experiment this past week where we put celery into food dye solutions and the four oldest had a blast. Unfourtunately a couple of the kids had explosive diarrhoea this week which made things.....messy. But through copious use of hand sanitiser etc. Kaylee, Billy and I managed to avoid it and everyone is recovered. We are getting into something resembling a routine now. We have started a new read aloud (Danny Champion of the World by Roald Dahl). We watched a couple of movies yesterday but for the most part their screen time has been infrequent simply because the rest of our life is so full and rich.
It has been odd finding a new normal. Life BK (Before Kaylee) saw me changing 95% of the nappies (yes, I was that possessive over changing nappies) and doing the bulk of the cooking and cleaning while Jon worked ten hour days four days a week. When he was home we would all spend time together working on projects or going on road trips. At the moment Jon is home all the time and is changing at least as many nappies as me (more during the explosive period) and doing as much if not more cooking and cleaning. As we settle in more I would like to take more of my old job back.
To be honest, when we were in the hospital I missed cooking and cleaning a lot. I regretted not spending more time doing it when I was home. I have come to realise all that time I spent putting off those tasks then being frustrated because my home was less than pleasant was so wasted. The effort taken to just get in and do it was insignificant compared to the reward. I have come to appreciate the small comfort of a tidy home, clean clothes and a hot meal so much more than I thought possible and I resent the wasted opportunities in my past where I could have had these things with minimal effort. There is a saying "you don't know how strong you are until you have to be strong". It could also be said "you don't know how hard you can work until you have to work hard". When we were in the hospital I worked 14-16 hour days most days and I worked harder than I ever have before. And it didn't kill me. The effort to get up and wash the dishes or fold a load of washing seems so small in comparison. Now days amid the strange mix of pumping, meds and normal life I am usually up somewhere between 5am and 6am and falling into bed somewhere between 10pm and 11pm on a good night (at times, later) and although my baby sleeps through most nights, her feed pump doesn't! Compared to what I am doing now, what I was doing was a cruise. But my day is full of cuddles, smiles, conversation and impossibly long eye lashes - and all of us together again.
I need to take a moment to shout out a big thankyou. To be honest, I am not totally sure who I am thanking for what because during the blur of those weeks when Kaylee was in hospital we experienced a huge influx of generosity. People blessed us with gifts, some I asked for through the blog but most were totally unasked for. Much of what we have I have lost track of who gave it to us. My freezer is full of food (two dear friends in particular went above and beyond the call cooking us up a storm!). Kaylee is the best dressed baby about. We are about to drown in clothes for the other kids. I have the most beautiful shawl and crochet layette that my Ravelry forum sent me as well as yarn and needles dropped off for me at the hospital by friends who I am yet to meet. People from my Homeschooling forum also poured out generosity over me while I was in Melbourne with food and other practical help as well as prayers. The lovely Bek was a super pit crew chief during that first Melbourne stay when my world was imploding. Friends and family watched my kids and helped Jon out in practical ways. Jon's old work collegues passed the hat around to send us gift vouchers for Mother's Direct and cloth nappies which has enabled us to save huge amounts of money by having Kaylee in cloth nappies for the majority of the time (a bottom that small requires teeny tiny nappies!) and helped us buy some practical items for Kaylee's day-to-day care and some literature to help inform us. Many, many people surrounded us in prayer.
We have also had a number of people give us money. We are doing OK with our day-to-day expenses for the most part so we are hoping to be able to keep the majority of the monetary donations to help pay for our whole family to stay in Melbourne together during Kaylee's next heart operation. This feels like an unspeakable luxury. Leaving my other kids for an indefinite period again seems like an almost impossible thing to do and having Kaylee and I disappear would not be good for Jon or the kids either. The Royal Children's Hospital will be in their new building by the time we get over there again with a two story fish tank, meerkat enclosure and fabulous set up to entertain sick kids and their siblings. We also have family and friends over there who will be happy to help us out if we need it so it makes sense for us all to be in Melbourne and I pray that it is possible to do this. I am certainly not asking for people to give us money, but I did want to let those who have given us money know what we plan to do with it and express my appreciation.
So thank you all of you. Those who have prayed. Those who have chipped in practically. Those who have simply sent a few words of encouragement at the right time. I am glad to be sharing our journey with such an amazing bunch of people.