Mikayla is 16 months today. Never. Never. Did we think we'd have this much time with her.
And yet there's more to celebrate today. This is really silly... I mean REALLY silly... but I feel like we've reached another milestone. Let me explain:
You see, for months now, and for reasons I cannot explain, I have had the number 486 in my head. I don't know where it comes from... it just pops in from time to time. Then, on Saturday, when I posted that post, after not having posted for a while... I looked at the numbers, and remembered.. 486. And I was worried. It's so silly... it's just a number... but after her turn on Saturday, suddenly it didn't seem so insignificant, and it just kind of lingered at the back of my mind over the proceeding days.
But now we're at day 489. That's 3 more days. It's a milestone. Not a true one. Not a significant one. But one nonetheless.
The bad news is that Mikayla's condition is not improving- well, not at any significant level. The doctor did a CRP sample, which checks her inflamation levels... and it seems that there is a decline in inflamation which suggests that the antibiotic is fighting the infection. But her lung is still consolidated. We have given her slightly stronger pain meds to keep her calm- she has been really fretful the last few days.
Tuesday was particularly bad. She was really unhappy. When I arrived her upper chest was all puffy. She was agitated, and was shouting- a horrible cats cry. To cut a long story short: the IV line that was now being run into her jugular vein in her neck had BENT. Can you imagine how sore that must've been?! They have swapped sides now, and she seems more comfortable. But the only other place to run a line, if this one comes out, will be her head... and then all her crazy hair will have to be shaved off (and it's only just growing now). But for now, it looks fine.
So since yesterday afternoon, the meds seem to be keeping her calm. And I think if she isn't spending so much time fighting and shouting, perhaps some of that energy can go to fighting the infection.
I feel so sorry for her. Her poor little body must be so sore. She has now been having physio for 11 days. On that tiny body! My heart just breaks for her. She's is so strong, and yet so fragile.
I am not sure what to feel at the moment. I am tossed between utter despair and worry, to strength and calm, to surrender. The reality is that at this stage it doesn't look good. We are doing everything we can, and yet she isn't getting better. We've moved through several antibiotics; and while they do their part, her body can't to it's part, and so she just gets worse again. How much more can her poor little body endure?
It's just not fair.
And yet, Mikayla has surprised us all before. Several times. And as long as she wants to fight, we will help her. It's really up to her.
Friday, September 9, 2011
Sunday, September 4, 2011
Day 485 Hospital Update
Mikayla has been up and down today. She is sleeping alot, but this is better than being awake, because when she is awake she can get quite distressed. Although we have had a couple time when she has been awake, and calm. Yesterday we took the boys to see her. We just told them she is sick, nothing more. She was so calm when they were there. You really could see that she was pleased that they were there, even though she didn't smile. I was worried about Luke though, who was quite tearful :( He said he doesn't like her being sick. I know he fears the worst, although her cannot quite verbalise his fears.
The nurses are playing with her O2 levels between 2 and 3. And again, she is up and down in this respect. She doesn't like being held or moved too much. Except for her Daddy. Mikayla just LOVES her Daddy. She is calm around him, and even let him pick her up today. I hope it's a good sign.
I am feeling... I think scared. I don't want her to be in pain, or suffer. This sucks.
Saturday, September 3, 2011
Day 484 Please pray
Miks took a turn for the worse in the early hours of this morning. Her upper right lobe has collapsed again, and her left lung is completely consolidated. She is currently breathing with only about 25% lung capacity. It isn't good. Please Pray! I am terrified of her suffering :(
Friday, September 2, 2011
Days 469 - 483 Reflection and Perspective
I've been thinking alot lately about how far we've come. Not sure why. But I think perhaps it gives some perspective to the "now", when you stop and consider "then".
Mikayla was born and we were given weeks, nay, days of possibly being with her. But the days become weeks, and the weeks months, and the months years! But it's not just time. The early days were hard. Really hard. I guess I need to remember that as Miks starts to frequent hospitals more often, something that wasn't an issue before... The perspective is that in those dark early days there were some really hard moments. The apneas. You cannot begin to know what it feels like to hold your limp, purple baby in your arms, to breathe life into her, to shake her just to get the life to come back into her eyes. Or what it feels like to hold a baby that won't stop crying... For eight hours solid, and with no means to comfort her. To hold you emaciated child wondering if she's starving to death.
I'm sorry, I am painting a bleak picture... But here's the important part: we came out the other side. And in those dark days there was also much joy. There were the obvious ones: the smile around 6 months. The age milestones. The reaching out to touch things. But there were others: the softness of her skin. The sparkle in her eye. Watching her gain weight, and actually get chubby! Smiling at her brothers. Dancing together to our special song. All simple innocuous moments that make up a life. Those are what memories are built on... All those innocuous moments.
As I sit here next to your hospital bed, Miks, watching your O2 levels rise and fall, with the red beep every time it drops below acceptable levels. As I hear the suctioning of the machine as the physio sucks out all the mucous build up, as i hear the bubble bubble of the oxygen machine, as I watch the soft rise and fall of your chest, and wonder how it is that for 14 months you barely went to the doctor, and yet in the last two months you have been hospitiliised THREE times, and I wonder if this is how our lives are going to be? Endless hospital visits? As I sit here, I think it's important to reflect on how far we've come. How far you've come! What we have survived, what YOU have survived.
And also to take a moment to be humbly grateful for all that we have had so far.
I have often said how hard it was when you first entered this world, because the daughter I was expecting was robbed from me. And that feeling of loss was so enormous. Like a thief in the night, all my joy, hope and happiness was taken from me. But I've been thinking about this a lot, and, well, something cannot be stolen from you that you don't actually have. In my head I had a "normal" baby girl. But I never actually had her... So how could she have been "taken from me". It doesn't change the sense of loss, but perhaps I need to take in cognizance that what I have is what I always had, but just didn't know it. And every now and again I need to step back and recognize that the wonder of that may just exceed the loss.
Little Caleb passed away this week. It's been really moving to witness all the people that that beautiful child has touched and the impact his short 29 months have brought. How can we not be thankful for his life? And so it is, Miks, that I am thankful for yours, and thankful that today. Right now. You are here with me. And that really is a blessing. Even in the hard times.
Mikayla has been in hospital since Monday. She has pneumonia. Although not bad, they are battling to wean her off the oxygen. She is sleeping most of the time, and obviously unhappy. I am finding a lot of the nursing staff either rough with her, or completely uninterested. It upsets me immensely having to have her there all the time... I have to be home to breastfeed Jude. I was hoping she'd be home today.... But I guess we'll have to see what tomorrow brings! Just want to see my sweet girl smile again.
Mikayla was born and we were given weeks, nay, days of possibly being with her. But the days become weeks, and the weeks months, and the months years! But it's not just time. The early days were hard. Really hard. I guess I need to remember that as Miks starts to frequent hospitals more often, something that wasn't an issue before... The perspective is that in those dark early days there were some really hard moments. The apneas. You cannot begin to know what it feels like to hold your limp, purple baby in your arms, to breathe life into her, to shake her just to get the life to come back into her eyes. Or what it feels like to hold a baby that won't stop crying... For eight hours solid, and with no means to comfort her. To hold you emaciated child wondering if she's starving to death.
I'm sorry, I am painting a bleak picture... But here's the important part: we came out the other side. And in those dark days there was also much joy. There were the obvious ones: the smile around 6 months. The age milestones. The reaching out to touch things. But there were others: the softness of her skin. The sparkle in her eye. Watching her gain weight, and actually get chubby! Smiling at her brothers. Dancing together to our special song. All simple innocuous moments that make up a life. Those are what memories are built on... All those innocuous moments.
As I sit here next to your hospital bed, Miks, watching your O2 levels rise and fall, with the red beep every time it drops below acceptable levels. As I hear the suctioning of the machine as the physio sucks out all the mucous build up, as i hear the bubble bubble of the oxygen machine, as I watch the soft rise and fall of your chest, and wonder how it is that for 14 months you barely went to the doctor, and yet in the last two months you have been hospitiliised THREE times, and I wonder if this is how our lives are going to be? Endless hospital visits? As I sit here, I think it's important to reflect on how far we've come. How far you've come! What we have survived, what YOU have survived.
And also to take a moment to be humbly grateful for all that we have had so far.
I have often said how hard it was when you first entered this world, because the daughter I was expecting was robbed from me. And that feeling of loss was so enormous. Like a thief in the night, all my joy, hope and happiness was taken from me. But I've been thinking about this a lot, and, well, something cannot be stolen from you that you don't actually have. In my head I had a "normal" baby girl. But I never actually had her... So how could she have been "taken from me". It doesn't change the sense of loss, but perhaps I need to take in cognizance that what I have is what I always had, but just didn't know it. And every now and again I need to step back and recognize that the wonder of that may just exceed the loss.
Little Caleb passed away this week. It's been really moving to witness all the people that that beautiful child has touched and the impact his short 29 months have brought. How can we not be thankful for his life? And so it is, Miks, that I am thankful for yours, and thankful that today. Right now. You are here with me. And that really is a blessing. Even in the hard times.
Mikayla has been in hospital since Monday. She has pneumonia. Although not bad, they are battling to wean her off the oxygen. She is sleeping most of the time, and obviously unhappy. I am finding a lot of the nursing staff either rough with her, or completely uninterested. It upsets me immensely having to have her there all the time... I have to be home to breastfeed Jude. I was hoping she'd be home today.... But I guess we'll have to see what tomorrow brings! Just want to see my sweet girl smile again.
Thursday, August 18, 2011
Days 460 - 468 Here we go again...
So, we thought we were keeping your sickness at bay. Well, actually Miks we did really well. We even managed to re-inflate that collapsed lobe. I found our that the last time you were really sick you actually had LOBAL pneumonia. Apparently worse because it is concentrated in one area.. Hence the collapsed lobe.
Anyway, so we thought we were doing well, and then Sunday came. And your temps started going up. By Monday morning, your temps were between 38 & 39C and you kept vomitting up your feeds, and you sounded awful. So I whisked you off to see the pediatrician. He told me you had bronchial pneumonia, and sent me home with an extremely strong antibiotic, but everything we put in you (through your peg), you vomitted up. How is medicine supposed to work if you can't keep it in your little body?! By Tuesday morning your temp was around 40C! I phoned the pediatrician, and she recommended hospital.
You know, one of the things I hate most about your condition is how the medical community can treat you without compassion and any sense of urgency. I arrived at the hospital, and they did nothing for 45 minutes, even though you had a ridiculous temp, and you were throwing everything up. I wonder if they would treat a "normal" child with such nonchalance?
To cut to the chase, you spent two nights in hospital, and once you were holding things down, they said I could take you home. You're just down the passage from me in your bed as I type this. 3 out of 4 feeds you have vomitted up. Your vomit is a strange yellow colour, even though we've put nothing yellow in you. You have had 3 really wet stools today- one so bad i just threw away the clothes you were wearing along with the nappy... This for a baby that is always constipated! Your eyes.... Your eyes... Well... They're different. You have an almost glazed look about you. You're really sleepy. I keep getting this feeling like you're giving up. Like you don't want to fight anymore. I dunno. It's something about your eyes. And no smiling, and you're barely making a sound (SO not like you!).
Daddy goes away overseas for 10 days. The timing couldn't be worse for you to be sick.
You need to fight, baby. You need to fight.
Anyway, so we thought we were doing well, and then Sunday came. And your temps started going up. By Monday morning, your temps were between 38 & 39C and you kept vomitting up your feeds, and you sounded awful. So I whisked you off to see the pediatrician. He told me you had bronchial pneumonia, and sent me home with an extremely strong antibiotic, but everything we put in you (through your peg), you vomitted up. How is medicine supposed to work if you can't keep it in your little body?! By Tuesday morning your temp was around 40C! I phoned the pediatrician, and she recommended hospital.
You know, one of the things I hate most about your condition is how the medical community can treat you without compassion and any sense of urgency. I arrived at the hospital, and they did nothing for 45 minutes, even though you had a ridiculous temp, and you were throwing everything up. I wonder if they would treat a "normal" child with such nonchalance?
To cut to the chase, you spent two nights in hospital, and once you were holding things down, they said I could take you home. You're just down the passage from me in your bed as I type this. 3 out of 4 feeds you have vomitted up. Your vomit is a strange yellow colour, even though we've put nothing yellow in you. You have had 3 really wet stools today- one so bad i just threw away the clothes you were wearing along with the nappy... This for a baby that is always constipated! Your eyes.... Your eyes... Well... They're different. You have an almost glazed look about you. You're really sleepy. I keep getting this feeling like you're giving up. Like you don't want to fight anymore. I dunno. It's something about your eyes. And no smiling, and you're barely making a sound (SO not like you!).
Daddy goes away overseas for 10 days. The timing couldn't be worse for you to be sick.
You need to fight, baby. You need to fight.
Tuesday, August 9, 2011
Days 454 - 459 - Hide and Seek Video
Finally got to upload this video of Mikayla playing hide and seek with her Dad. She loves doing this.... and gets the cheekiest of smiles when playing :)
She's still pretty chesty. Thankfully it still hasn't progressed to her lungs... and we're doing all we can to ensure that. She's quite chipper though- and also has no temperatures. So given the circumstances, is actually doing very well.
I am however praying for little Lior, and his brave mum. He has bad pneumonia again. I just wish I could give Kim a big hug more than anything else. Our little babies are so small and fragile, and to see them fighting so hard is so heart breaking.
So, on this women's day, I want to honour all those amazing women out there that I know of (and those I don't), who give so much of themselves for their precious little special babies. Who love, and cherish every moment. Who would give anything to swap places. You are simply remarkable, and I couldn't have got this far without you.
She's still pretty chesty. Thankfully it still hasn't progressed to her lungs... and we're doing all we can to ensure that. She's quite chipper though- and also has no temperatures. So given the circumstances, is actually doing very well.
I am however praying for little Lior, and his brave mum. He has bad pneumonia again. I just wish I could give Kim a big hug more than anything else. Our little babies are so small and fragile, and to see them fighting so hard is so heart breaking.
So, on this women's day, I want to honour all those amazing women out there that I know of (and those I don't), who give so much of themselves for their precious little special babies. Who love, and cherish every moment. Who would give anything to swap places. You are simply remarkable, and I couldn't have got this far without you.
Wednesday, August 3, 2011
Days 436 - 453 It's raining It's pouring
Mikayla is sick again! She has bronchialitis. It is thankfully not yet in her lungs, and we are suctioning, doing physio and nebulising to try keep it out. She is not as miserable as the last time... And is not in hospital, which is a relief. Of course, just to make things interesting, Josh is also sick. Hes been vomitting and has had diarrhea. We've sent off urine samples swell, but I am hoping it's just a 48 hour bug!
Was so frustrated, because when we took Miks to the hospital on Sunday to see a doctor, the doctor put her on "Asthavent" after I had told her she has heart lesions... Apparently this particular medicine pits pressure on the heart' and the Xray of her heart om Monday shows that her heart is bigger than when she was in hospital.. Now that could be due to the infection, or the medication, or signs of pulmanory hypertension.
Sometimes living in the dark somewhat, is very frustrating... But sometimes ignorance really is bliss.
Anyway, been a pretty chaotic household... Russ & I are pretty pooped!
Miks has been really cute.... She plays this game of hide & seek with us- she particularly enjoys doing so with her Dad. I have a lovely video of it, and will try post it tomorrow. She really is a sweet little girl... And like all little girls, she just loves her daddy! And of course has him wrapped around her little finger.
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