Days 47-52

Oh my goodness what a crazy crazy week!!

To start the week, Mickey, your great aunt Lorraine passed away. She was the most amazing woman. She had a grace about her. I never heard her raise her voice. She was kind, and humble. And she spent the better half of her life caring for over 30 years for your second cousin (?) Hayley who was severely brain damaged- and I never heard her utter a word of complaint. She was just wonderful- I am so sad you never got to meet her... like the rest of us, you would have loved her dearly. But she is free and happy and healthy, and in heaven now with Hayley, who is also free and whole. And they're singing with the angels! We're the ones who are sad.

We've been trying desperately to pack, and in between work has been manic. Your grampa also came up to visit, and your granny is still here. It was grampa's birthday, and we had fun on Sunday celebrating with him.

Russ had to take you to the OT on Friday, as I went off to Lorraine's memorial service in PMB. They made a little brace for your hand. I don't think you fancy wearing it too much, but it's to help keep your wrist flexible and possibly even straighten it a bit, so it doesn't become tight in it's little bent position. You're funny when you wear it, because you somehow manage to get out of it everytime! But you only have to wear it for an hour every time, every other hour until you get used to it.

Your feeding has been up and down. You'll have a day where you average 45mls a feed, and then the next day you'll average 60mls a feed. On Thurday you were averaging 75ml per feed, even fitting in two feeds of 100mls each for good measure! You certainly keep things interesting! No hard and fast rules for my little princess.

I have some lovely hats for you... am taking some pics, and once we've settled down in our new (old) house, I'll post more pics of you. You're getting chubby cheeks, and VERY LONG! You must just now grow WIDER so that you can wear more of your clothes.... you have quite the wardrobe- and only fit into a few things (kind of like my wardrobe, only my clothes are too small, and not too big!)

Day 46

The Truth about Trust

Here's the thing about trusting someone: trust is self sacrificial. There isn't a huge self benefit to trusting someone. Ultimately, you are giving a piece of yourself to that person that you trust. You are saying "okay, I am going to accept, without knowing, that you will not intentionally hurt me, and that what you say is true and good, and what you do you will always do with me in mind, with the intention of honoring and loving me". And that's why betrayal hurts so much. It's that fact that you have had something taken from you in that betrayal.

On my side, I am having to trust in God. Trust in His plan, and believe that ultimately there is good in this. The hard part is not knowing if there will be good in it FOR ME. I can see how Mikayla's condition could benefit the greater good. I have seen already how it has moved people to love and care. To go out of their way for a complete stranger. I can see the good there. I really can. But I have yet to see the good FOR ME. Maybe part of what God will teach me, is that ultimately I have to trust in Him. And that perhaps part of trust is hoping. I guess that in some way when you trust in someone, on some level it's simply a matter of hoping for the greater good in that trust? In that person.

I know God is good. I know that. I know that His character says that He doens't create sickness and disease, and that He loves us. We are His children. But on the days when I am hurting... and I mean, REALLY HURTING, I cannot understand why my Father in heaven would allow me to hurt like this. And in that moment, I succumb to the negative, and in doing so, I let go of my hope. I guess that trust is a choice. And by trusting Him, I am choosing not to see what I am living in, for what it is, but rather hoping in what it could be- whether I know what that is or not. But I admit, it's really hard sometimes when you're in the thick of it, to actually see through the fog. In those moments, I want to be able to fast forward, to where I can see the whole picture; but then, perhaps, as someone shared with me, that wouldn't be the point: after all, you can rush a butterfly out of the cocoon by cutting the cocoon open, but the butterfly wouldn't come out beautiful and strong and whole, without the struggle of getting out of the cocoon.

Mikayla had her paed appointment today. She has put on weight, and that's all we know. She now weighs 2.96kg. Nearly nearly 3kg! I was kindly given a whole box of Infatrini... my oh my but my daughter loves this formula! What the paed also said we need to decide is whether or not we want to take Miks for another scan with the cardiologist, to see if her ASD and PDA have closed up, and to also check if she has developed pulmonary pressure, which could cause heart failure of the right ventricle (left ventricle is the common heart failure). She described what the symptoms were, but rather than give my words, this is the Wikipedia description:

Backward failure of the right ventricle leads to congestion of systemic capillaries. This generates excess fluid accumulation in the body. This causes swelling under the skin (termed peripheral edema or anasarca) and usually affects the dependent parts of the body first (causing foot and ankle swelling in people who are standing up, and sacral edema in people who are predominantly lying down). Nocturia (frequent nighttime urination) may occur when fluid from the legs is returned to the bloodstream while lying down at night. In progressively severe cases, ascites (fluid accumulation in the abdominal cavity causing swelling) and hepatomegaly (enlargement of the liver) may develop. Significant liver congestion may result in impaired liver function, and jaundice and even coagulopathy (problems of decreased blood clotting) may occur.

Note: heat failure is not the same as heart attacks etc..

Otherwise the appointment was fine. Miks herself had a good day. She was a star in the evening. We had her on Infatrini. With the Infatrini, she finishes her bottles, or leaves only a tiny bit, which means she is drinking up to 75ml a feed. The great part is that she went for 5-6 hours between feed during the night... which is great cos we're getting more sleep.

And we've started our packing... only 1 week to go til we move back home (only 7kms away, but still REALLY exciting!!)

Day 45

This is all so wrong.

And I am so. very. sad.

Day 44

Sleeping beauty

Miks still isn't eating well. And it's not from lack of trying on our part. She just feeds about 30-40ml, and then flat bang refuses anymore... even if I give her a break, and ensure the bottle is warm. I must confess, it worries me. It's a strange thing, you know, when you've been told your child is going to die, according to the laws of medicine, you start looking for those things that will ultimately take her life. It's a terrible thing, and I have to consciously stop myself from reading too much into every tiny thing... thinking "is this it?". It's quite creepy, actually. Unnatural.

But Miks, at your 5pm feed, you ate really well, and after your bath you had the most wonderful wakeful good few minutes. I was holding you, and you were looking at me. You seemed to be scanning every detail of my face, and tracing the outline of my head with your eyes, like you were taking in every detail. I obviously can't say if that was infact what you were doing. But, Miks, it was so special. And I was taking in every detail of you too. The shape of your eyes, the dark blue of them. The arc of your eyebrows, the little beak at the end of your top lip that is so kissable.The way your hair has lightened over the weeks, the way it's straight, with the ever slightest bit of curl. Your little pixie ears, your tiny fingernails. your strawberry chin. I just want to treasure every detail of you. I want to make sure that I never forget.

To quote Jim Croce:

If I could save time in a bottle
The first thing that I'd like to do
Is to save every day
Till Eternity passes away
Just to spend them with you

If I could make days last forever
If words could make wishes come true
I'd save every day like a treasure and then,
Again, I would spend them with you

But there never seems to be enough time
To do the things you want to do
Once you find them
I've looked around enough to know
That you're the one I want to go
Through time with

If I had a box just for wishes
And dreams that had never come true
The box would be empty
Except for the memory
Of how they were answered by you

But there never seems to be enough time
To do the things you want to do
Once you find them
I've looked around enough to know
That you're the one I want to go
Through time with

PS. I am told that you look big in all these pics, Miks, so I thought I would take a pic of you and me together to show how little you still are.... and for the record, your mommy doesn't have a big head

Day 43

Miks has two enormous you-know-whats today. When I wipe her bottom, some blood does appear on the cloth. Miks has a small protrusion of skin... kind of like a small pile. It seems to be coming from that. Perhaps that little piece of skin is coming away? Anyway... our paed appointment is on Tuesday. We'll check it out.

Little Miks has a relatively sleepy day, even though she had family and friends over to visit. Although she had one really long awake spell. She was in her bed (I thought she'd fall asleep), but just lay happily awake for AGES. Otherwise she is well. I am thinking the clearing of her gut really cheers her up... poor little mite!

Was reading to the boys tonight, and I read them a child's poem book on the following:

"Jabez was more honorable than his brothers. His mother had named him Jabez, saying, "I gave birth to him in pain." Jabez cried out to the God of Israel, "Oh, that you would bless me and enlarge my territory! Let your hand be with me, and keep me from harm so that I will be free from pain." And God granted his request" - 1 Chronicles 4:9-10

I have always liked the above scripture. The simplicity of it. The simplicity of his request to God, and yet the greatness of it. I know, I know... many a book has been written on it, and yes, that's where I gain my knowledge of the scripture (can't say I have attempted to plough through the rest of Chronicles!), but how often do we ask God to bless US?? We pray for our children, our parents, our friends, our friends friends, and even the ladies dog two doors down. But do we pray for OURSELVES? SPECIFICALLY?

Just a thought! Maybe I'll give it a go.

Day 42

So, people comment often how "strong" we are. Well, the following kind of sums up what coping really comes down to (thanks Kathy for recommending I look it up):

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley

Mikayla isn't eating too well. I am wondering if perhaps she fairs better when she is at home in a quiet environment. I find she eats better then. She likes to just lie quietly watching her little night light changing colours, or her mobile gently going round and around. Stimulation makes her frustrated and tires her out, only to wake up fretful and more frustrated. Maybe I will try let her have a quiet day at home (Russ and I will have to do shifts! I have a 3 year old's party to take my boys too... they wouldn't miss a party for the world)

I am tired....

Good night :-)

Day 41

“To whom will you compare me?
Who is my equal?” asks the Holy One.

Look up into the heavens.
Who created all the stars?
He brings them out like an army, one after another,
calling each by its name.
Because of his great power and incomparable strength,
not a single one is missing.
O Jacob, how can you say the Lord does not see your troubles?
O Israel, how can you say God ignores your rights?
Have you never heard?
Have you never understood?
The Lord is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
He gives power to the weak
and strength to the powerless.
Even youths will become weak and tired,
and young men will fall in exhaustion.
But those who trust in the Lord will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.
They will walk and not faint.

Isaiah 40:25-31 [Italics mine]

God gives and He takes away (to paraphrase Job)... ULTIMATELY all of our time is written. Pre-written in the heavens. Who are we to be so arrogant that we think we can or cannot control our lives here on earth?

Don't get me wrong, I believe that we should HOPE. And DREAM. And DESIRE. We are His children, and any parent wants their children to be happy. But if you could see the outcome of the choices your children make, and you knew that they were not good, wouldn't you do everything to steer them in the direction of the path that you knew would bring them ULTIMATE joy, even if it meant some sorry and pain in the present? And maybe that joy isn't even to be found here on the earth. And I guess in part that's what I am learning. God is a BIG God. And He sees the WHOLE story. Not just my little part.

But the thing I do long for, I guess, in my life, is restoration of sorts. A little placing back of some of the joy that this has lost in my life. That's my hope, my dream, my desire.

Mikayla has been really quite unhappy again today. I did weigh her this morning. She is up to 2.94kgs.. nearly nearly 3kgs! I have run out of her good stuff... ha ha... the expensive formula.... and she is now down to the pleb stuff. I fear she is having withdrawal symptoms!! :-)

I have been very busy today. Booked her paed appointment. Booked her OT appointment, and even managed to book in a little gynae appointment for me. Have been really sore, and worried that I have developed an infection at the site of my C-section. But it looks like it's just inflammation. I am on antibiotics just incase (can't be too careful nowadays), and then some anti-inflammatories as well. I was expecting an infection of sorts given my run of recent good luck :-) Don't want to speak too soon... but, as a wise old musician once said: "the times, they are a-changing"... Here's hoping so!