Tuesday, June 29, 2010
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!)
Wednesday, June 23, 2010
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!!)
Tuesday, June 22, 2010
Sunday, June 20, 2010
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
Saturday, June 19, 2010
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.
Friday, June 18, 2010
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.
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 :-)
Thursday, June 17, 2010
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!
Wednesday, June 16, 2010
Mikayla had a great morning... guzzling back her [ridiculously expensive] formula. She was a happy little camper. The afternoon...not so. She got progressively angrier and angrier.... she guzzles down her food, which then give her winds, but then she wants to suck through the discomfort... more winds. Didn't want to lie down. Didn't want to be held up. Didn't want to be cuddled. Wanted to eat. Didn't want to eat. Just overall pretty cross. Not sure if she's perhaps cross that her mother made her eat the cheap formula this afternoon... or maybe she's got a sore tummy (you know, poo story again)... but she was just angry. In fact, during her 2am feed, she was even shouting at me. Yes, my 5 1/2 week old baby actually SHOUTS at me. It's quite a thing really, being shouted at by your tiny baby. She doesn't cry. She shouts. Such attitude :-)
So, you've all heard this: attitude = altitude.
I decided it should be: perspective = attitude = altitude
Have received so much encouragement from other T-18 mums and dads out there. It's a whole other world, which I never knew existed. Families conquering through their "new normal". Families dealing with tragedies, and small milestones, and even little miracles daily. It makes me wonder why I was so tuned out before? There are people all over the world, probably just on our doorstep, dealing with such enormous decisions and challenges. And yet we can be so oblivious to it! I hope that my eyes are opened to the world around me, that I might reach out and touch those around me.
I read this today, and I liked it:
John 1:16 (NIV)
From the fullness of His grace we have all received one blessing after another. [italics mine]
Perspective people. Perspective.
Tuesday, June 15, 2010
Anyway, so Miks had the taste for the good life today. Not loving the normal formula (NAN) as much- but good little girl that she is, she drinks her NAN too.... er.... just slower. She slept well today, and, well, it was all fairly uneventful really.
I joined an email support group... T18 specific (thanks Kathy!)... and the response I have had from other people who have gone through, or who are going through what we are going through, is quite unbelievable. What has shocked me is seemingly how little SOUTH AFRICAN support there is for T18 families. Abroad there are NPO's like SOFT who provide all sorts of support. Here, it seems to be a case of "your baby's disorder is incompatable with life, take her home to die". Ouch! I am not discounting the severity of the disorder... but what about if she LIVES? What if Mikayla continues to grow...nay... LIVE? Without my intervention? I mean, lets be honest here: Mikayla has seemingly little SEVERE defects (unless there is something my paed hasn't told me), and all the things that she has had wrong she has seemed to "fix"... IN SPITE OF US, and not because of us. Apart from the first 48 hours in hospital, we haven't provided any intervention whatsoever. So if she lives 3 years, or 5 years, or 13 years or 28 years, who advises me on care, who helps with her care, who do we turn to for financial support, and medical support? The children who live need wheelchairs, and special walkers, and special schools and and and..... I cannot believe that there isn't some kind of SA NPO who deals with this reality?! I will admit, that at this stage the majority of people who have contacted me who's children have "survived", live abroad. I wonder why that is? Look, by no means is my "list" exhaustive, but this is what my experience has pointed to so far.
This of course isn't necessarily a reflection of what I do or don't want for Mikayla's life... but it's THOSE uncertainties that scare me, because they will have a direct and very real impact on us as a family.
Oh, and we got our new medical cards today... with Miks name on the card now. I have to confess, I didn't think I would see the day. Nearly 6 weeks now. My goodness!
Public holiday tomorrow. Yay! Ooh, and my back is killing me... I have to start sitting properly when feeding Miks. All this hunching is killing me! And as for my abdomen.... man! Can't believe I am battling with this C-section healing like this, this time around. I am hobbling about like an old man (no offence to any old men out there!).
Monday, June 14, 2010
After her bath tonight, I gave her a massage, which she actually really enjoyed. Think I am going to do it more often. She is so alert after her bath... I know I've said it before...but I mention it again, because it's also my favourite time with her. I love to just watch her as she looks around, like she is absorbing every detail she sees. And then something seems to catch her eye, and her eyes go really wide like she is quite horrified... its very cute!
I also love her around feed times, cos she makes the cutest gurgling sounds. And they are quite specific. She has the "I'm irritated" gurgle, the "I'm content and might even fall asleep" gurgle, which I call her "purr"; and then there's the "I'm tired now"..er... which is less of a gurgle and more of a groan and wriggle-squiggle. Ok... none of that made sense. But I'm her mum: I get it!
The funny thing is after last night's blog, would you believe it... I dreamt Miks smiled at me. And not once... but TWICE! And you know... it's just as I predicted... completely dazzling and beautiful. You'll just have to take my word for it. But it has supermodel written all over it. Move over Cindy Crawford!
Now, don't fall over, but last night I read Lamentations. Really, I was expecting something alot more depressing. I ploughed through the whole book... and you know... it's not so bad. Look, Jeremiah is a miserable thing. But that's why they call him the "weeping prophet". But you know what- even the moaners have important things to say sometimes, if you'll listen. I liked this:
"The thought of my suffering and homelessness is bitter beyond words. I will never forget this awful time, as I grieve over my loss. Yet I still dare to hope when I remember this: The faithful love of the LORD never ends! His mercies never cease. Great is His faithfulness; His mercies begin afresh each morning. I say to myself, "the Lord is my inheritance; therefore, I will hope in Him!"- Lamentations 3:19-24
Why Lamentations you ask? Well, I think I was psyching myself up to read Job. You know, when I got saved, Job was the first book I read. Can you believe it?!?! The funny part being that when I came to report back to my Alpha group about reading Job... I referred to it as "job" (as in the thing you do for work)... and not "jobe"... I mean, let's be honest... whats with the spelling... it's terribly confusing for newbies!! But I know better now. Anyway, been thinking for a while now of reading it. Let's be honest, if Job can endure and survive what he did... I reckon there's a lot to be said for that.
So I did some more looking around the net, and getting in touch with other T18 mums. I have to say, it actually left me quite deflated. It can introduce more questions that answers!
But if you get a chance, go check this link out: http://www.youtube.com/watch?v=th6Njr-qkq0
Very sad :-( Infact, I feel sad. Sad for all the families who have had to say goodbye, sad for the families who had to struggle, sad for the precious little girls and boys who put up such a brave fight.
You quickly learn the things that are important and those that are not. When Luke was a baby, being my first child... well, I was his walking dummy. That child could eat (suckle, lets be honest), until the cows came home. So when Josh came along he was a 7-minute-a-side boy. And I have always been quite verbal that no child of mine will ever be long feeders again, having had the eternal feeder with Luke. The thought of endlessly feeding like that again, horrified me.... And then Mikayla came along. Well, her feeds take up to an hour, sometimes more. And you know... I love every second of it (ok, not at 1am in the morning.... but come on! I can be forgiven for that!). Suddenly the fact that I am not breast feeding isn't such a big deal. The fact that Mikayla can feed on her own is so exciting, I don't care that she can't breast feed! She's the bomb! As they say, "don't sweat the small stuff".
And perhaps I should be celebrating Mikayla more. I cannot emphasise enough: every little milestone that Miks achieves she does in spite of me, not because of me. I am inspired at her strong will, at her courage and her determination. And boy does she have attitude. Don't go thinking you'll get anything by this little mite. She's no fool :-)
Miks, here are the reasons you are a miracle:
1. You made it to full term
2. You survived being born via c-section
3. You came off your oxygen in less than 48 hours
4. You took a bottle in less than 48 hours, and continue to drink from the bottle
5. You made it past 30 days
6. You have no MAJOR defects to speak of
7. You are alive
You are my miracle child. We don't know what tomorrow holds, but Jesus knows why you're here. My only job is to love you. And that I will do with the greatest of honour!
Sunday, June 13, 2010
Miks has been pretty much like she was last night... fighting her sleep. And still snack eating. But otherwise good. I weighed her tonight. She is up to 2.9kg! Yay for Mikayla! I am rooting for the 3kg mark... Go Miks Go! I am pretty convinced that a substantial amount of her weight is being put on her cheeks. Mind you, it just makes them more and more kissable.
It's funny, cos there are still days when this all still feels so surreal. And it takes almost everything in me not to live in the future. You know... waiting for tomorrow to happen. Waiting for my closure. I know, like I know, like I know, that I need to enjoy Mikayla here and now. But it's really difficult when the only one certainty is that her survival isn't good. How good obviously depends on two things: firstly, on circumstance. We just don't know what will happen to Mikayla in the days, weeks, months or years that lie ahead... and if or what will effect her in a big or bad enough way that it could make her tap on deaths door. And then secondly possibly the level of intervention we take. The second largely depends on the first, which needs no discussion on my blog. Sorry. Some things are too personal to speak about in this forum :-)
The thing I desire most at the moment? To see my sweet little girl smile. Oh my goodness, she would have the most beautiful smile!! For now, only in my dreams....
Oh, and please forgive me for plagiary et al... but the following was to sweet not to share (thanks to my dear friend for sending it to me):
"Wee little baby, fresh from Gods arms
You light up the world with your sweet baby charms
May God ever bless you with love and with grace
And may joy always shine on your dear little face"
Mikayla, my darling, my prayer is that I would always honour you. That I would honour you now while you are with us. That I would honour God, by caring and loving His beautiful (and my beautiful) little child. You truly are a treasure. And while there is so much I will miss with you- SO MUCH we will NEVER experience together, so many firsts that I will not not see with you; I know that I am better for having known you. You have changed me somehow. I discover this in small doses daily. You have changed US.
But there are days when this is so unbelievably hard. It's a strange thing to have this mixed emotion of feeling honoured that we were chosen to be your parents, and yet feeling picked on for the cruelty of it. There is no question that your being healed and healthy would have been my first choice. But these are things we simply cannot change.
The Serenity Prayer:
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Trust in the Lord with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6I had to add this as well:
There is a remedy, or there is none;
If there be one, try to find it;
If there be none, never mind it. - WW Bartley
I guess it's all just a matter of perspective!?
Saturday, June 12, 2010
So I was thinking... the thing about putting ANYONE before yourself... particularly someone you can't see; IS humbling. That's why being humble means putting people before yourself. Maybe it's a bit of a chicken and egg scenario. And one thing that keeps coming up is how God will use Miks condition for His glory. Now, I am not saying I like that; but when you don't have a choice in the matter... well, you don't have a choice, do you. And how often do we ACTUALLY give God all the glory. I mean REALLY give God the glory? I mean, we're talkers, us humans. We say things, and even do things... but never does it become more real that when the choice is taken from you. And maybe that's a good thing. Not having a choice I mean. Hmm... anyway, I am babbling!
Friday, June 11, 2010
You know, my Dad once said to me that it's in tragedy, or in hard times that you see who your true friends are. There is certainly truth to that... but what it doesn't point out is how much you learn about people, and their capacity to care for one another. It's so easy to care for people, in some respects, who are experiencing pain of some sort, because we have a REASON to extend out our hand and touch them. Oh, if only we could all humble ourselves to that point everyday, and for no reason... imagine what an amazing place the world would be!
"Do nothing out of selfish ambition or vain conceit, but in humility consider others better than yourselves" Phil 2:3
"God opposes the proud but gives grace to the humble" James 4:6
"Before his downfall a man's heart is proud, but humility comes before honor" Prov 18:12
Mikayla hasn't fed well again today... well, she feeds fairly ok, but she seems to be eating less, and it quite fussy when she eats... but maybe I read too much into things. But she was good today. Had a very dirty nappy this morning!! I really hope that has made her more comfortable. We went out to watch Bafana Bafana on the big screen today (whoop whoop.. ayoba... and all that)... and Miks was passed around, and loved and cuddled... at least she doesn't fuss... real little angel my darling. There are no words for how completely in awe I am at the people in this community. Thank you. Thank you. Thank you.
5 weeks old today, my little darling. I can't believe how quickly it's gone.
Counting down the days til we move back into our home.. looking forward to seeing my little girl in her room, and the boys each in their own rooms too. We won't know ourselves with all the space. And I think I will start going on walks... Mik and I. I think she'll like that :-)
Oh, and did I mention that my husband ROCKS?! And he also rocks my world.
Tomorrow I will take some more pics of my precious. Good night :-D
Thursday, June 10, 2010
I sometimes find myself, like a scary moment yesterday in the toiletry lane in SuperSpar, just staring at nothing, wondering how it is I got to this place. Er, in my life, that is, not the toiletry lane. Everyone else is just so, well, normal. How does life just go on so normally? Do people look at me and think "shame, she's the one with that child with the disorder". Is that how I will always be remembered? Please don't get me wrong... I am NOT ashamed of Mikayla, or her condition. I love her. Nothing. Nothing. Nothing will change that. Ever. I do, of course, wish she was whole.. but I wish that for HER, more than for me. It just all seems so unnatural. So wrong. I keep thinking this can't actually be happening. And yet it is.
Mikayla was fairly well today. Hasn't wanted to be left in her bed to sleep. Seems to want to be held a bit more, and loving hanging over my shoulder as opposed to lying in my arms. She fusses as if she is hungry, but spits out her food like mad. Poor little thing.
It's weird... I watch her, and there are moments when she is so LUCID. She seems so completely normal in those moments. It's like, just for a few moments, any breakdown of communication is fixed. I imagine the ends of two electric wires touching, just for a moment, so that the electricity passes through, and then the wires move apart, and the light goes out... and she looks, so... well... sick.
Wednesday, June 9, 2010
Regarding her feeding... we are going to try a special formula, which name eludes me at the moment... but it is special formula which has added carbs, but won't be hard on her kidneys. It is apparently quite costly, so we'll try it out and see if it helps at all, and take it from there.
While I was on the phone to the paed, Miks vomited... and it definately wasn't a posset, as it was projectile (sorry, rather graphic, but just truthful!).... I was terribly worried that Mickey had perhaps picked up with Josh had. The paed said that babies do sometimes just vomit, and that provided she didn't vomit again within the few hours that followed, it should be fine. And she hasn't vomited again, nor is she running a temperature... so it looks like she is fine.
Me? I am not so fine.
This hurts so very very very much.
Tuesday, June 8, 2010
Mikayla slept and slept today. And has been unhappily awake. Still no poo! :-( Am concerned. Russ and I were looking at the back of the formula tin at their recommended feeds... and at one month, they recommend 150ml per feed, with 5 bottles a day. Miks has maximum of 75ml per bottle (although probably only drinks between 55 & 65ml each time), and a maximum of 5 bottles a day. And I have tried making her drink more- no doing with my little girl. When she is full, or had enough, she just spits any more milk out. *sigh* It makes me so very sad that my little girl will not grow into a big girl one day :-(
And she continues to be strong.
Josh was sick again today. He's had high temperatures, and vomited last night. By the time he went to bed, he had definately improved... although he hastened to add that he was still very sick, after I told him it was school tomorrow.... even half day is the end of the world... this child, for all his "sociability", HATES school like you just don't know!! Luke just obliges! My ever pleasing child (except when he's is playing WII, when he becomes a complete terror).
The very sad news is that my maid, who has gone off on maternity leave, is in hospital... her baby died in the womb. They didn't let her hold him (she was around 36 weeks!), and haven't even told her how he died. I just feel desperate for her. So many sad things happening... it's just too much.
Monday, June 7, 2010
And the race is hard. It's the toughest ever.
What do you do?
Collapse into a heap and just stay where you are forever?
Me? I am not a quitter. I have to just move on. Keep going. My nature, actually, is go just persist, as hard I can... quite frankly, to get it over and done with. There are days when that's what I want... just to be finished. Over. But in a race, the most rewarding part is knowing that you finished the race... not because you finished it, but because you took part. You gave it all you had.
Someone pointed out to me today that perhaps when the race is at it's hardest, what I could do is take in the scenery. Enjoy the view. Chat to a friend along the way. Make something out of it, when all seems lost.
How is it that people endure the hardships they do? We're nothing special, really. There are people who have suffered far more than Russ and I.
I confess there are days I am FURIOUS. With the doctors, with myself, with other peoples happiness, with God. But I know that I cannot stay in that place. And I know that it doesn't change anything. This is what it is. That's all there is to it, really. And part of what this IS... is a little, beautiful, innocent child. With kissable lips, delicate fingers, a perfect nose, a mop of dark hair, denim blue eyes. She has skin so soft, I cannot stop touching it. I love to bury my nose in her soft hair, and smell the babyness of her. And you know, my race is so insignificant compared with hers. She is the fighter. She is the strong one. And while I have my moments of doubting whether God is holding me in the palm of His hand, I believe with all my might that He is holding Mikayla.... who wouldn't want to hold such a treasure?
Someone said to me today, that the best part (they have a completely different circumstance, and yet completely the same circumstance to what we are experiencing) about their little boys life (who is sick), is that they don't get to make the decision about whether he goes or stays in this world. And I guess she's right on some level. After all, that's an enormous responsibility- one that I'd rather not take. And so I have to trust this over to God. Whether I like it or not.
Mikayla has been so good today. She is awake around 1 1/2 hours at her feed times, and then very sleepy in between. She quite happily goes off to sleep on her own. She still hasn't done a poo... it's been a few days now. She is quite fussy at times... I am not sure if it's cos she is uncomfortable due to the lack of poo, or just general grumpiness; but for the most part she is a quiet, good little baby. No apneas. Breathing still labored. Another day...
Love you Mickey!! :-)
Sunday, June 6, 2010
Dyl spoke this morning on God's plans for our lives. And the long and short of it is that we need to keep that perspective... that GOD has a plan. And that it is BIGGER than us. But, as He promised in Jeremiah, it is to PROSPER us and give us a HOPE and a FUTURE. Never has that promise been more hopeful to me.... I have to grasp onto any hope I can during the hard times... what else do I have? Then, a girl I had never met before, came up to me in church and said that she felt God saying to her during worship that His words from Psalm 30 were for me. And that she felt that I had a heart for worship or something. I can't remember everything she said, but it was very encouraging. And what a nice couple. Hope to spend more time with them in the future :). I know it's really hard to put yourself out there when God shares with you... it takes trust in Him.... really, MORE of Him and less of us. And we're so introspective, us humans. So me-focused. So good on her for having the guts.
Mikayla was super sleepy after church today.... just seemed to be sleeping the day away. I was feeding her at lunch time, and she had quite the possett on me.... so I gave her a little sarcastic "thanks Mikayla"... and Josh, all indignant, says to me... "don't be mean to Mikayla, mommy"... the ever protective big brother! Man, I have seen such a soft side to him since Mikayla entered the world. It's too cute! The boys played beautifully today. Had to capture some pics of them too.... I am so desperate to get snapping away more... need more models :-)
And Psalm 30 goes like this:
1 I will exalt you, Lord, for you rescued me. You refused to let my enemies triumph over me. 2 O Lord my God, I cried to you for help, and you restored my health. 3 You brought me up from the grave,a]">[a] O Lord. You kept me from falling into the pit of death.
4 Sing to the Lord, all you godly ones!
Praise his holy name.
5 For his anger lasts only a moment,
but his favor lasts a lifetime!
Weeping may last through the night,
but joy comes with the morning.
6 When I was prosperous, I said,
“Nothing can stop me now!”
7 Your favor, O Lord, made me as secure as a mountain.
Then you turned away from me, and I was shattered.
8 I cried out to you, O Lord.
I begged the Lord for mercy, saying,
9 “What will you gain if I die,
if I sink into the grave?
Can my dust praise you?
Can it tell of your faithfulness?
10 Hear me, Lord, and have mercy on me.
Help me, O Lord.”
11 You have turned my mourning into joyful dancing.
You have taken away my clothes of mourning and clothed me with joy,
12 that I might sing praises to you and not be silent.
O Lord my God, I will give you thanks forever!
But what then, about my baby girl? What about that vision I had for a beautiful little girl? I SAW her. She was standing... about 3 years old. Wearing a little frock. Blonde hair in a bob, with a gorgeous little fringe. Blueish eyes. She was MINE. I had never felt something so certain... but I was so scared to BELIEVE. Is that because my vision was a lie? Because the reality is that Mikayla CANNOT ever be that child. Hope as I may that she would be. I was so excited when we discovered Mikayla was a girl, because I finally felt like God DOES talk to me... not just all those other spiritual people out there.... that yes, HE SPEAKS TO ME! But all that has been shattered! I have had a few people tell me things that they believe God is saying to me through them... but I so desire that God would speak TO me... and now I am not so sure He ever has, or ever will? A sad sad thing....
Saturday, June 5, 2010
Mickey was an absolute star last night! Had a feed at around 10:30pm, then at 3:30am, and then only woke up at 8am! Angel child! And didn't keep us up for hours on end when she was awake to feed.
She's a real particular little thing. She won't feed if she is full, or if she has a wind... she actually SPITS the food out her mouth! She also prefers to sleep where there is noise. Still doesn't mind sleeping in a bright light room; and it seems that the more noise the better. She actually falls asleep quite easily in a noisy room, whereas she fusses to get to sleep when I put her in her room. But she does do both.
Was checking on FB tonight, and a friend of mine, who's daughter was born the day before Mikayla, posted that her daughter smiled at her today. I am obviously thrilled for her. But will I ever see my daughter smile?? Possibly not. It makes me tremendously sad!!
And the thing that keeps striking me is how much I still want a child. The void I felt, that need to have another child, which made us "try" for Mikayla, hasn't passed. It is stronger than ever. Does that make me a horrible mother? That even though my child is born, I am still desiring a child... a healthy child? And what happens if we do have another child? What if Miks lives to prepubescent years? I will have two babies to look after? That scares me a little... but I cannot get away from this feeling... it is all consuming!
Friday, June 4, 2010
Miks was fairly good today. Her breathing was horrible today, especially in the evening... just really labored! Seeing her tiny body sucking in air like that, requiring so much effort, makes me terribly sad. My constant prayer is that she doesn't suffer... it would be so wrong for a tiny innocent being like her to suffer at the hands of this cruel world. I took her with me to fetch Luke from tennis. She wouldn't finish her bottle before we got there, and kept spitting it out; but then moaned like anything when we were there, trying very hard to suck on my finger!! So much for not being hungry! And then, of course, I didn't have the bottle on me... I felt terrible!
Thursday, June 3, 2010
I went out at lunch time to fetch the boys, and left Mikayla finishing her bottle with the lovely lady helping out with us at the moment, while we try find someone to work for us full time for a 3 month contract, while my lady is on maternity leave. Anyway, she called me about 10 minutes after I left, to tell me that Miks had stopped breathing. She had managed to get her breathing again... but shame, I think she got a bit of a fright. I had warned her these could happen though, and had told her what to do, and I must say, she seemed to handle it very well. I have a feeling it wasn't a proper apnea though, as from time to time Miks stops breathing for short periods (8-10 seconds) anyway. The paed just refers to this as interrupted breathing (I think). Still, if you aren't used to it, it can be quite alarming being on the receiving end of one of these.
The paed called today, having spoken to the only geneticist who lives in Durban, who is now retired. She was hoping I could maybe go and chat with him, in the hope that I would get more answers. His health is declining though, so I won't get to chat with him. She did say, though, that she had an informal chat with him, and he said that in his many years of experience, and having worked in the USA, and having seen countless cases of T18 babies over the years, that the oldest he has seen a T18 child survive is to prepubescent years, and that the children who do make it there are severely mentally and physically impaired. Some have managed a small amount of mobility, most are unable to speak, but they cannot function like a normal able bodied (and able-minded) person can.
Do I want that for Mikayla? Would any parent want that for their child? Added to the emotional toll it will take on us as a family, there are the financial implications, the time implications. As it is, Mikayla (being a tiny baby), takes up the most part of my day with feeding, burping, getting her to sleep. The reality is, that unlike healthy children, a mentally and physically impaired child requires the same (practically) amount of time that a newborn does. It would mean giving up my job, possibly, or hiring someone else to look after Mikayla. How would that effect the possibility of us having more children? And that burden will ultimately fall on my shoulders. And as selfish and as cruel as it sounds, I don't want that ENORMOUS responsibility- nor do I want to palm my child off into someone else's care. What does that say about me as a mother? As a person? Well, I think it says that I love my child, and I want her to LIVE... I am not talking BREATHING here... I am talking LIVING.
And you may not like what I am saying... but, as someone said to me today: don't criticize until you've walked a mile in my shoes!
Wednesday, June 2, 2010
How are things? How do I answer that question? How is Mikayla? Fine? Well? Breathing? Alive? I don't know how she is. I mean, she is all of those things, but she still has Edward's Syndrome. That's not going to change, unless by a miracle of healing. I am not saying that's not possible... and that I am not hoping for a miracle... I would love a healed daughter... but I also have to live with the reality that that's probably not going to happen. I asked throughout my pregnancy... EVERY SINGLE DAY (often a few times a day).... that God would heal her if she was sick (even when I was told she was "fine"), and she wasn't healed... I am afraid to say that to some degree I believe His purpose for Mikayla involves this disorder... whether I like that or not.
Anyway, the paed and I were chatting and I mentioned the neurologist, and just that I would like to KNOW how her brain is functioning... as I said yesterday, that won't necessarily bring me any kind of comfort either way... but it may give me a little more clarity. Anyway, the long and short of it, is that the paed just said that babies that "survive" T18 (i.e. live longer), are severely mentally handicapped... ALWAYS. Well, deflated doesn't come close to how I feel.
I live on a pendulum, swinging from grasping onto hope, to clinging in despair. And no answers. No goal to work towards. No closure.
While typing this, my boys went outside to chat to the neighbor's son... this is the bit of conversation I heard:
Neighbor: "hows the baby?"
Luke: "She's fine"
Neighbor: "She's cute, hey? I saw her at school today"
I took Miks with me to fetch the boys... the kids (and adults, actually) just love to hold her and touch her. *sigh*
Her sleeping wasn't great tonight. She is really battling to poo... poor little noo-noo.... she isn't constipated... she just seems to store it all in? And she gets grumpier and grumpier, until she gets it all out. I am sure it's just cos her gut is under developed. Although, perhaps it's just because I tend to look for the worst in everything?