Boiling frogs and warm fires

It's 4:30 am and I am sitting up using my breast pump and watching Kaylee sleep. 


She is doing super well.

We have only had to suction her twice this shift and then only a little bit.  I am going to ask for her oxygen to be turned off to see how she copes with it - I think she will do fine without it.  Over all she is doing brilliantly.

But I am not sorry we came.

Truth be told I was getting very tired and she was dangerously sick.

At home I was giving 6 hourly meds, 8 hourly meds, daily meds, managing her feed pump, using the breast pump and suctioning her nose every few hours day and night.  I didn't realise just how insane it was trying to manage all that plus do the other things I was doing until I stopped doing it all.  Just like I didn't really realise just how awful Kaylee was starting to look until after she was on oxygen and started to look better!

There are two reasons things got as crazy as they did.

The first is, it happened slowly.  If you put a frog into hot water it will jump out but if you put it in cold water then slowly add heat, the frog will boil alive - not realising that the water is getting hotter and danger is imminent.  I think I was a bit of a boiling frog by the time I brought Kaylee in to hospital.  I was looking at photos I took a day or two before we came in and  I was startled at just how pale she was.

The second reason is, Kaylee is my sixth baby but I am still finding where the panic buttons are with her and working out when I need to call in help.  A bit of a snotty nose that you just keep an eye on with another baby, really needs to go to the doctor with Kaylee.  A bit of a cold you'd just take to the doctor with another baby is a trip to the hospital for us.  A hospital trip for another baby - a plane trip to the mainland for us.  I still find it totally crazy that a slight cold that would have been a mild inconvenience for my other kids would have killed Kaylee if we hadn't come in for oxygen and treatment.

And it is further evidence that we are indeed in a whole new world with Kaylee.

Sometimes well meaning people try and reassure me that after Kaylee's heart surgery she will by "right as rain"  - but the truth is she won't be.  Her heart surgery is a huge hurdle and getting over that will free us up to address some of Kaylee's other issues - but on a day to day basis the biggest change initially will be two less medications to give.  And that's it.  Kaylee's feeding stuff, reflux stuff, cleft stuff, developmental stuff and all her other stuff will still be there and still need dealing with.  This isn't just a long term thing - for Kaylee, and for us, this is a life long thing.

Usually when your kids get sick you know they will get better.  They get chicken pox and as they whine and itch through the rash you know that in two or three weeks time they will have a few scars and childhood memories of watching TV on the couch.  They get appendicitis and usually, after the initial trauma of hospital and surgery, there is an expected recovery time and a life afterwards with only a scar for a souvenir.  With Kaylee she will not get better.  It is like a fair ground game where we use mallets to hit the gophers that pop out of the holes. 

I honestly do not know how people walk this road without a faith.

Because I believe, truly and deeply, that my daughter will be miraculously healed.  There will come a day that she runs and jump like other children.  There will come a time when she will have a voice to speak her mind.  There will come a time when she will bite into the fruit of the tree of life and use the leaves that are for the healing of nations.

But right now God is using this time and all the evil and horribleness that goes along with this world, to sand back the rough edges of my character.  He is blessing us and giving us what we need even while Very Bad Things happen.  And the good things don't make the bad things better, the bad things are still very bad.  But the bad things only make the good things sweeter.

And HOPE for the future is like a fire by which I warm myself on a cold night.

We're home

Coming home was like waking up from a bad dream.  We are already carving out a new normal with feed pumps, breast pumps, medications etc. playing a major part.  Today we had pancakes for breakfast and I am still in my PJ's at close to tea time - taking a day out for rest on the Sabbath.  Yesterday we had a picnic in the backyard complete with Kaylee in her rocker with her feed hanging from her IV pole.  We only have two chapters of The Chronicles of Narnia left to go and then we get to close the books and savour the memories as we move on to another world to visit.
 There are adjustments - the kids are learning not to touch Kaylee's pump and tube or my breast pump.  Jon and I both go full pelt every day from the first moment of waking to when we fall into bed at the end of the day (Sabbath is a very big hit here at the moment!).  There are also a thousand different false alarms and starting at rabbits in the bushes.  Last night I was administering Kaylee's meds and felt a bit of resistance.  Inside I heaved a big sigh and pictured Kaylee's tube being blocked up with her 6pm med because I didn't flush it well enough.  It's a tight rope act to flush enough to get it all out of the tube, but not so much that Kaylee ends up with too much going in to her small intestine at once and making her tummy sore and diluting the capsule contents can be tricky so I thought, perhaps, I had got it wrong.  The idea of having to go into hospital that night to have a new one inserted (a rather uncomfortable procedure that can take an hour or more) did NOT appeal.  I checked everything and tried again - it turned out the syringe had just stuck a little.  Little events like this can get a little tiring!

Her little snore sounds like a cat snoring and it is quite comforting to hear.  We are going to get some foam wedges for her to have tummy time and nappy changes on.  We discovered that nappy changes on a flat surface makes a small ocean of yellow stomach fluids rush out Kaylee's mouth and nose.  Not attractive.  We don't need a mobile, there are always a couple of faces hovering over her.  She is totally doted on by everyone - other than Andrew who ignores her or tries to steal her dummy.

Jon has done a fabulous job with the other kids and home.  Andrew and I are getting re-acquainted.  I left a 14 month old with about four teeth, only just pulling himself up on furniture with 0 vocabulary.  I have come back to a 16 month old with a mouth full of teeth (he's been teething non-stop since I left) who has taken his first steps already and can say a few words.  I need to check with Jon to see what he likes and doesn't like now.  Anna is fragile and very cuddly and plays peek-a-boo with Kaylee.  Christopher stays as close as he can and often asks "Can I touch Kaylee?" like he thinks she may float away.  Billy constantly wants to know if he can help (he laid out Christopher's clothes for him yesterday unasked) and really wants to get in on the practical side of things.  Erin has lost a tooth and grown two more since I left.  She adores Kaylee and would administer meds if I let her!

While Kaylee's needs have provided a different beat to our life right now (and most likely forever) we still add our melody.  Pancakes, picnics, story time and worship are still woven into our homelife.  The meandering conversations between Jon and I that have been the staple of the last 11 years still provide veins of gold to our days.  Cuddles, kisses, stories, discipline, changing nappies and wiping noses all pepper our days with their own unique colours.

And I love being HOME.

Blogging will likely be a once a week-ish affair now I am home.  Life is taking all my time right now

I have more to say than ever but I need to be with my family right now.

The biggest thing left unsaid to all of you out there is THANK YOU.

But I have six kids waiting to be tucked into bed so that will have to wait for later.

But rest assured, I will get back to it.

Somewhere amid living this amazing, crazy life I have been blessed with.

closer to home

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.