An update

Dear friends,

I want to testify of God's love and compassion.

Yesterday was a day of ups and downs.

I held my baby skin to skin and she ATTEMPTED TO LATCH ON. Tears flowed people, tears flowed. I had almost got adjusted to the idea that we may never have a breastfeeding relationship that doesn't involve a pump - which is kind of like having a friendship that is only over e-mail, beautiful but different! This is GOOD news. And at this point it was simply more good news on top of the good news we had been getting since we got here. I think a part of my brain had fooled itself that given time I would walk into the room and she'd be completely better - "normal".

Then Kaylee's breathing went backwards. They did some tests for this including a lumbar puncture among other invasive proceedures. The day before yesterday was a HARD day adjusting to a new ward and sleep still alluded me so to walk in and be told this more than knocked the wind out of my sails. Especially as I was told this by my favourite PICU doctor, who also told me that Kaylee may end up back in PICU.

I want to hold my daughter through every painful proceedure and sing to her and the fact that I can't just kills me. I have been trying to be there for every moment that she stops breathing, every moment that she experiences pain, every moment that she is unsettled and at the moments she is peacefully resting, I want to sit in the chair next to her an watch her. But at this, I walked away. My legs were swollen to twice their size, I had run out of fresh underwear, I was shaking and crying, I had not slept more than ten hours since Kaylee was born total - and that was restless and broken, hardly sleep really. I was at my limit.

And this is where I testify of God's love.

I walked downstairs to where my Pit Crew Capitan was waiting - with a Bible and some clothes. I cried long and hard on her shoulder as she prayed over me. The Holy Spirit comforted me with scripture - Psalm 121. I prayed that the angels would sing over Kaylee seeing a I could not. The Holy Spirit reminded me of Zephaniah 3:14-20 - read it people it's good stuff. I cried and I talked, I talked and I cried. I drank coffee. I came to a realisation. Standing next to my daughter trying to feel as hurting as she does, DOES NOT HELP HER. It kills me to do it but I have to trust my medical team of fantastic doctors and nurses and WALK AWAY. This is new to me. I am ALWAYS the one to comfort my newborns, I change 95% of the nappies, I had to laugh when a friend confessed to me today that she is a control freak because she is one of my subjects - for I am the QUEEN of control freaks. I used to be involved in every moment of my children's lives and right now I am a completely different kind of mother. Changed overnight. It is strange getting my bearings in this new world and I know that I need to find my role and my groove soon so I don't burn out.

I went upstairs and changed my clothes then went down to Kaylee's room where she had settled quickly after the tests. Sitting next to her was the biggest fruit basket I have ever seen. Seriously people, you are TOO GOOD TO ME. The person who sent this too me I have never met in person, she is a fellow homeschooling Mum on an internet forum. She only knows me through the words I write yet God used her to give me exactly what I needed at the time.

So I have made a plan.

I am going to do the things I can do the best way I can.

I will hold Kaylee, I will sing to Kaylee, I will express milk 2-3 hourly through the day and 3-4 hourly through the night, I will read to Kaylee, I will love on Kaylee with all my heart.

And sometimes I will walk away.

I will eat, I will sleep, I will write.

I will cry on the shoulders of my angels with skin on.

I will breathe fresh air.

I will go against every fibre of my being to accept graciously the extraordinary
outpouring of generosity I am facing from friends, family and all my "Imaginary Friends" out there in the internet world.

I will not torture myself as I walk away with thoughts of "what if my daughter dies while I am laughing with a friend" because I know I have loved her best I can and will continue to love her best I can. And I will put on my own oxygen mask so I can be there for her.

So I slept a bit and expressed more than twice as much milk afterwards.

I munched a sweet pear and wrote.

I cry, I laugh, I talk to my other kids, I taste chocolate.

And I sit by Kaylee's bed and be her Mum.

Because that is all I can do.

And I will do it well

Thanks to God and thanks to you.

Later that night I spoke to my children on the phone and as I put down the phone was overwhelmed with gut wrenching grief.....and my pit crew chief knocked on the door, held me, gave me the things I had asked for, prayed over me, talked to me, laughed with me.

God is good.

I am like a tomato plant. Without His staking me up, I would be a jumbled mess on the
ground covered in rotten fruit. But He is holding me up.

Thankyou Lord.

Today I was better after something resembling sleep. I moved rooms but I had help to
do so. I had support on the end of my phone. I was better to myself and therefore was more able to be there for Kaylee. I fell asleep while expressing milk (I worked out I spend about nine hours a day doing this at the moment, trying to get enough for my tiny girl to help her grow into a not-so-tiny girl) and I fell asleep in the chair by her bed. I had a real, healing, hour long sleep and expressed more milk.

Sheila – my favourite PICU Dr. – came back to put a long line into Kaylee so we can give her some specific medicine over a longer period (test results for Meningitis and a culture growth came back inconclusive, so we need to treat for them just in case). I turned up just as her job was finished and did my job – cuddling and singing to my completely exhausted baby whose mouth fell open as she slept, causing me to realise she has my lips.

Unfortunately, they didn’t get a long line in. Her little blood vessals are just SO small. So tomorrow they will be taking her to surgery to put in a central line. I am going to do my job, make milk, cuddle, read, talk, sing and pray like crazy. I am going to ignore the bleeps and squeeks of the machines and let the medical staff do their thing without trying to control, direct or even understand their every movement.

Please pray.

Pray that the doctors will get a line in quickly and easily tomorrow.

Pray that the cardio team will have wisdom and discernment as they formulate a plan
for the care of Kaylee’s little, holey heart.

Pray that the nappy rash on her bottom (thrushy, thanks to the uber doses of antibiotics) will be cured.

Pray that my little girl keeps on breathing.

Give thanks for a day where Kaylee did not stop breathing once today (she is on Maximum dose caffeine, I see many a moccha in my girl’s future!)

Give thanks for an amazing support network that has sprung into action for me. My Pit Crew Chief literally gave me the shirt off her back last night – a very comfortable one with breastfeeding access.

Give thanks for McDonalds. The “food” sucks but the free WiFi is fantastic and I can access it 24 hours just by sitting outside the restaurant in the hospital

Give thanks for good friends visiting and offering help to Jon back in Tasmania.

Give thanks for mobile phones. I hate them, but I love that I am contactable at all times by the ward, my husband, my friends and the comments you leave on this blog. I can also call my support team.

Give thanks for His Word. Psalms 30-35 were for me this morning as I expressed.

Pray that I keep making super milk and make more of it for my girl.

Give thanks for the testimony that my little girl will have.



“Let her sleep, for when she wakes she will move mountains”- Midsummer Night’s Dream