Thursday, January 27, 2011

Days 263 - 265 To Operate or Not to Operate?

I went to the pediatric dietitian on Tuesday. And while she didn't tell me anything I didn't already know, she has slightly changed Miks' eating plan, and, well, we have a plan now at least.

We have loaded her feeds (formula to water ratio), just a little, to try increase her calorie intake, and we are also trying to aim to also have her increase her fluid intake in the form of water, to hopefully help address her constipation issue. This we will do for one week. Then, week 2, we're going to attempt solids again- and the dietitian also gave me some great tips on "bulking" her solids to increase her calorie intake without having to necessarily make her eat MORE... so clever! Her biggest concern was that Mikayla isn't currently getting sufficient calories in her system, even for her size, which is why her weight seems to waiver around 4kgs. Obviously this has implications not only on her size, and her growth, but also her neurological development. Plus, without sufficient calories being taken in, she doesn't have sufficient energy, and since her energy expenditure is already so much for her, because of her low muscle tone, it is in part her reason for being unable to eat more than she currently eats (she just tires out too easily)... so it's a vicious little circle!

Which brings us to the next possible plan of action, which is to have a G-tube inserted directly into her gut. The idea here is not to stop feeding her orally, but rather to use the G-Tube to increase her feed intake, thereby increasing her calorie intake. At the same time, we could use it to give her more water, which will hopefully help with her gut issues. And this can all be done without her expending any energy whatsoever.

I have my concerns, obviously. The operation itself is not a major operation by any means.... the procedure itself takes only about 10 minutes, and the "wound" takes not even a few weeks to heal- kind of like a pierced ear would heal. The issue here though is that, for any person, there is risk involved due to the anesthetic etc.

Obviously with Mikayla, we don't know firstly how she will react to the anesthetic, nor whether her heart will cope with it. We also are not sure whether her heart defects have worsened over time. Also, as is standard procedure, she will be ventilated whilst on the anesthetic, and we don't know whether she will cope easily when trying to come off the ventilator. At this stage, we will obviously have to sit with the surgeon and anesthetist, and discuss all the risks. The anesthetist may require that we take her to the cardiologist again to have another check of her heart.

I am not sure how I feel about it. I think the operation is a necessity. If it helps her put on weight, there is a good chance she could sleep better, for one, but also be a happier, more content baby- which is good for her, and good for us. But there is a certain amount of fear: if something goes wrong, and something happened to her, would I blame myself? I would hate to feel RESPONSIBLE for her death. Anyway... we are just in exploration stage!

She has been very unhappy lately, in the sense that she wants to be held constantly... now, I do actually love cuddling her... but carrying her around while I am trying to cook supper, or late in the evenings, when I am tired, is not fun! On Sunday and Monday night, she was VERY unhappy during the night- in fact, on Sunday night, she was awake for 2 1/2 hours in the early hours of the morning... which was really taxing on me. But last night, albeit she had had a terrible time getting to sleep, she slept from about 9pm til around 1am, and then straight after that feed, slept again til 7am!! She was also very happy this morning... so I thought perhaps we had turned a corner... but alas, this evening she has been really unhappy again... just crying constantly :( Russ is funny, cos he can ignore her crying, but if I can hear her, it makes me really uptight... completely stressing me out... and after HOURS of it, I feel like a wreck!

*Sigh* I just pray that there is a day when she turns her corner, because I long for her to be happy, and content... for me, yes, but also for her!

Monday, January 24, 2011

Days 261-262

Having been terrified of the weekend, as Russ was away, and I thought Miks was going to give me a real hard time (which would've been just my luck!), Mikayla proved me really wrong, and had two really good evenings on Friday and Saturday night. I was ever hopeful that we had turned a slight corner- she even seems to be putting on a little bit of weight...and then last night struck! I couldn't believe it: she was awake every 3 hours! I had to do all the feeds, as Russ had to fly down to PE to fetch a car, which he then has to drive 1000km back home, so I didn't want him to be too tired. And then today she is terribly unhappy again... doesn't want to feed- and is not at all smiley. I am really hoping this dietitian will help us somehow!

I have to say, one of the funniest little things Miks does at the moment: is how she frowns at me. Sometimes (like today), she's so serious, and when I talk to her, she crinkles up her little brow and frowns at me. It really is cute! And we (3 of us) were all gathered around talking to her this morning, and she was looking from one person to the next to the next.... as if sussing us all out.... I managed to get one little smile out of her... but nothing major. She's obviously not feeling so well. I was actually worried she was running a temperature today, as she felt hot (and it's a cold day, so it's not fro the outside temp)... but I measured her temp, and it was quite fine at 37C (her temp averages around 37.5, so I don't tend to take notice of anything under 38 or so).

I keep wondering: how is it that some people just seem to have a blissful sail through life with never a trouble in the world? They never seem to have to struggle for things... they never seem to have to endure any kind of suffering whatsoever. They get the good jobs, the nice pay, and never seem to have to struggle to get there. Why is it, quite frankly, that seem people just seem so incessantly LUCKY.... I feel like the unluckiest person in the world. Don't get me wrong: this isn't a pity party... and I'm no fool: I know have been very blessed in so many ways.. I know, like I know, that I have SO MUCH more than some, but still, some people are just downright lucky. Why? And then why are some just so UNLUCKY? And I know there are people way worse... WAY worse off than me (I mean, to put in into perspective... we've had a rather unfortunate year this last year, but even then, actually I can still count my blessings!!). Are we born one or the other? Why does God answer some prayers and not others? Have I done something wrong? Isn't He listening? Or is He?

I'm waffling, I know this!

I have to end by saying this: as much as "lady luck" hasn't become me in the last year: I am VERY thankful for the blessings I do have. I realise that were it not for God's blessings we wouldn't have any of the blessings that we have... I just keep hoping that I'll turn my corner. That we'd be examples of God's graciousness, greatness... of His miracles!! Isn't that silly? After everything, of course I still hope in God. And I still believe He can change everything for the good.... I still hope that He will answer me.. someday... somehow....

Sometimes I worry about how we'll cope if Mikayla stops fighting her fight? But, as I said to someone yesterday, and as the saying goes: "it's better to have loved and lost, than never to have loved at all"

Saturday, January 22, 2011

Days 259-260 Reaching

Russ was away yesterday- infact for the weekend... and after yesterday being a complete disaster with Miks, I was anticipating an AWFUL night. As a result, I was tucked up in bed by 9pm.

Well, once again, she showed me!! She went to bed around 7pm, after only having half her bottle. But given the way she'd been during the day (she cried most of the day, and fed really badly), I decided not to fight the issue.

She stirred at 09:30pm (due to some idiot sales person phoning me at that time- I think the phone woke her, as it did me!!). Then woke at 11:15 for a feed. She would only take half the bottle, and I was so exhausted, I decided to leave it be. She woke again at 12:30.. and I thought "oh boy, here we go".. but she had a tiny bit to eat, and fell asleep, only waking for her next feed at 5:45!! She downed that bottle, and fell straight back to sleep until 08:45! Blissful! So am feeling somewhat more refreshed today, thank goodness!

Anyway, I took this video today- a perfect example of the "reaching out" that she does.... I think she is overstimulated easily, and so won't do it too long... but this clip is the end of a longer "spell" of her reaching for this little tiger teddy. If you look carefully, you'll see that she actually manages to open her hand to grab the whiskers.. really amazing as her left hand she battles to open and close her grasp easily. You can also see in this video how she likes to put her right hand over her left hand.

I just love this little treasure.

On a sad note: two families lost their T18 treasures yesterday. To the families of Amadeo (45 days old), and Nolan (18 months): my heart just bleeds for you... there is not a day that goes by that I don't, even just for a moment, think about that day that we'll have to face in our family, and just thinking about it hurts like nothing else. May you find comfort during this time in The Ultimate Comforter. And Amadeo and Nolan: fly high, beautiful children...

Friday, January 21, 2011

Days 253-258

Gosh, a week gone by already! Where does the time go? And Mikayla is already 8 1/2 months old!! Some days I still think I am going to wake up, and this is all going to have been a dream... but then Mikayla wakes up for a feed at 1am, and it all comes rushing back at me :)

It's been a chaotic week in general. The boys were back at school this week (yay for me!)... I was dreading it, what with Luke always fussing about school, and with almost the whole group of Josh's friends having moved schools... I thought Wednesday was going to be a nightmare... well, once again my children showed me up (like Mikayla REGULARLY does), and they have been absolute superstars... settling nicely, and happy as Larry.. I hope it stays that way.

Miks has been really up and down- although, in hindsight, that itself is not new news... she's erratic as a general rule. But the last week she's had some really strange days. Like take today- she was really quite happy first thing in the morning, but by lunch time she was really unhappy. Now the strange part is the "manner" in which she is unhappy... today she wasn't grumpy... she was SAD. When she cried it was a sad whimper... that really seemed to come from deep within. And, when L resorts to giving her paracetamol, then I KNOW that Miks has been VERY unhappy. She still seems to lift her legs alot, like her stomach is cramping... it's almost like she's actually trying to stop herself from pooing- which children do do... and then she actually makes herself constipated.

Anyway, as Russ said, we have to do SOMETHING about it, because anything is better than where we currently are! So I have succumbed, and am going to see a pediatric dietitian... in the hope that some serious attention to her diet could help her poor little digestive tract, and make her happier, and more settled. I am not sure if it'll be enough, but I suppose we have to start somewhere. If things don't change by the time the new one arrives, well, you'll have to lock me up- as it is, I am a complete zombie...

She also, in between her bad moments, can be a real sweet little thing... I have a mobile that hangs next to her changing mat, which she really loves. It's really low, so she can actually, by accident, touch it... and she gets really chuffed if she does touch it! Then the other day, I was leaning forward, and she would slowly move her hand forward, and it would touch my lips, and I'd kiss it, and she'd grin, and then take her hand to her mouth, and then she'd do it all over again- she did this 4 or 5 times!... I really think she was TRYING to touch me... she wasn't actually reaching out in so much as she was just moving her hand to me (I was well within reach), and she doesn't have that much control over her hands... but she was definitely trying. Sweet little thing! I'll often take her hands, and open them on my face, and she gets really mesmerized when she's touching my face.... I do the same with the mobile- and she loves touching that- she gets really quiet when I am holding her hand to it. Not sure if she quite gets it yet that her hand is the one touching, but she seems to like it. Oh the small things that I took for granted with the boys!

She also, if it's bright in the room (like if the lights are on), always sleeps with her hand over her eyes... like this:

Oh, and an update on the weight: I actually did weigh her, and she had lost some weight, and at the beginning of the week she was down to under 4kgs, but then I weighed her again halfway through the week, and she was back up just over 4kgs! So, I think, like her "moods", and her eating habits, her weight fluctuates. I am hoping the dietitian will be able to help here.

I have also ordered her some dark glasses! Can't wait for them to arrive... will post pics when they do :)

Friday, January 14, 2011

Days 250-252 Weight issue weighing on my heart

We should never compare our children. Ever. But I can't help this one:

You see, the issue is that Mikayla is still TINY. Now, most T18 babies remain small, certainly smaller than their non-T18 peers. But if I look at Mikayla's size at 8 months, compared to other T18 babies when they were 8 months... it's not so much HOW MUCH she weighs, in so much as how very thin she is. To be honest, I haven't actually put her on a scale recently... which I will do (but she's sleeping right now... and you know what they say about sleeping babies!)... but she really is THIN. Her little bottom is so skinny, that her bones, at the bottom of her back actually stick out. Much like an anorexic. Her ribs are very visible, and her knees have absolutely no meat on them whatsoever. In fact, her knees are wider than her thighs and calves, again, much like an anorexic. Sometimes she looks completely starved to me! Although I will add that after a meal, her tummy gets really "big".

It's not from lack of trying. I feed her as much as I possibly can, but normally she doesn't take more than around 90ml... if she has a "hungry day", she may take up to a MAXIMUM of 120mls. And she does this every 3-4 hours, even during the night. I know it's not enough for a non-T18 baby of her age- but unfortunately those rules don't apply.

We've tried some solids, and I do give her cereal or purity once in a while, but my experience is that she gets badly constipated when I do that, and I also can't bear to see her in so much pain (aside from the fact that it also impacts us and our sleep patterns, because on some nights when she has been badly constipated, she has basically cried the whole night)!

And here's the clincher: I try feed her more, but she actually PUSHES the bottle away, by moving her head from side to side, and brushing the bottle away with her hand... and gets really cross if I get forceful (I've tried).
And when I have managed to force more food down her, she actually vomits it up... it's really like her little tummy can only take so much, and that's it.

Russ and I were also chatting about it last night, and we were commenting how her upper body is definately stronger than her lower body... and while she does move her legs, she seems to have very little strength in them.. in her lower body in general... and certainly has no fat on them.... in some places she actually looks like she has loose skin... again, much like an anorexic. I really don't know what to do about it. Am I slowly starving my daughter?

I might be being a little over dramatic. But, while she has developed little "cheeks" on her face, which indicate a bit of fat, no one else sees below her clothing... and she really is thin.

My biggest fear is, and always has been, that she would suffer. It is my most whispered prayer, that God would spare her of any pain or suffering.

I am feeling very alone at the moment on this, and really don't know where to turn.

Wednesday, January 12, 2011

Days 244-249 Wondering about wandering

I would say that probably the most frustrating element, if you like, with Mikayla's condition is this: no rules apply. So there isn't a formula that works for all T18 babies. Each varies on a case to case basis. And certainly in Mikayla's case, it also varies on a day to day basis. It means we never know what to expect, and everyday that a challenge is presented is dealt in isolation to another day... even if the other said day presents the same challenge.

It's not without an attempt on my part to create some kind of continuity, even a slight attempt at a routine... the problem is what works one day, simply doesn't work the next.

It does make it difficult for us, as a family... because we really have nothing to "work towards" (or from)... but more than that, I think it must be so hard on poor little Mikayla. I get recommendations for Miks to see people for this and that... but I know that those said people haven't had dealings with T18 babies, and even if they had, she would still be a kind of "guinea pig"... and I just can't put her through that. So we plough along, figuring things out as we go. Sometimes it makes me feel like a bit of an island. And I believe no man should be an island.

It's also strange, because the bible talks about the Isrealites wandering in the desert for 40 years. That's where I feel like I am in some ways. My life is so rich with colour in some ways, and so desolate in others. It may seem like I am trying to attain perfection in my life... but that really isn't the case. I just want to be happy. Joyful. 2010 was a difficult year. What does 2011 hold in store for us as a family? Part of me longs to hold onto hope of good things to come... but the experience of 2010 has left me skeptical and despondent. It's a sad place to be.

Mikayla has been on and off lately... she is still an amazingly "healthy" baby.... so, she has no major sickly things to deal with. We never take her to the doctor. She's on no apnea mats or special chronic medication. She's had no operations.. and other than the apneas she had in her first couple of weeks, we have had no major medical scares to think of. It's miraculous, really. We certainly have the issues of her constipation... and I am at a loss on what to do there. We really have tried everything... and one day she's fine, and the next not... without us actually changing anything in her diet. It's frustrating, because I can see the discomfort it causes her, and I hate her having to go through that. But this is one of the things we plough along with! Also, lately she seems to cough quite alot while feeding... I have put it down to her being tired... she certainly seems to cough more, the more tired she is... perhaps she just doesn't concentrate as much. But other than that, in terms of her "health", she certainly is on top of the world.

I am so very fond of her. She is such a sweet, gentle little girl. She has become more cuddly, and seems to like being held in a cuddle, far more than she used to. Josh has been too sweet lately. He's such a caring little boy, and will do anything to make her smile, or calm her down with she's moaning. He's his MO in life! And she is very fond of him, often giving him bigs grins, which makes him grin straight back. I love it! But sometimes it scares me, to think of the future, and how hard this has been, and will be, on the boys. It's just so wrong!

I always used to say that "no mother should ever have to bury their child", and I thought I would never be the kind of person who could cope with having a child with a disorder such as Downs Syndrome (obviously in those days I knew nothing of T18)... isn't it ironic what life throws at you? Sometimes I think I should hope for all the bad, and then maybe some good will come my way... a kind of weird reverse psycology (*laughing hysterically*... like God could be fooled?!?!?!?).

So we continue to take the positive with the negative. And everyday I love my little girl more than the day before... and everyday, it scares me just a little bit more.

Thursday, January 6, 2011

Days 241-243 Sleeping Beauty

I couldn't believe it... last night, Miks had a bottle at 18h30... she didn't quite finish her 90ml... she probably had around 75ml or so. She then did her business.... TWICE, without any suppositories, and THEN... WAIT FOR IT.... she slept til 1am, finished her bottle at 1am (which Daddy gave her), and then only woke again at 7:30am!! I just couldn't believe it!! I woke up at around 5:30am... it was light, and I thought "gosh, haven't heard a peep out of Mikayla"... I hadn't even woken when Russ got up! It was a strange feeling... I had a moment... and then I could hear her breathing, so I knew she was fine.... oh golly gosh, I hope she does it again.... and again.... and again.... what I would give for her to have a decent sleeping routine in the evening before this baby arrives... or I am going to end up a complete zombie!

During the day she's been fine. Not VERY smiley.... but not terribly miserable either. She slept ALOT today... but is quite happy awake tonight just chilling.

I just love this little girl. For everything that she may not be, which I am sad about for her, and for us.... she's a little darling... and has the sweetest little nature. I know we're blessed by the little things... the fact that I've seen her smile... heard her laugh... held her hand... that she feeds out a bottle, and breaths fine on her own. I was thinking today, that as hard as the hard moments are.... I am so enjoying her :)

But life is going to be CHAOTIC when this little baba arrives.... eeek!

Monday, January 3, 2011

Days 206-240 Getting to know Miks better

So the first few weeks of December were just chaotic, trying to wrap things up before taking leave. I basically hadn't taken leave pretty much the entire year, and since I had to take all my leave by the end of the year, decided to take a full months leave. Somewhat disappointing really, as it's not like we've jet-set off to some exotic location... but rather we spent Christmas with my folks, and have otherwise just been at home. But I have loved the MUCH needed break. To clear my head. And settle my heart a bit.

As mentioned above, we spent Christmas down in East London (that's Oos Londen, in die Oos Kaap, and NOT the East of London, Britain, incase anyone was wondering.. ha ha). Well, the morning we left, Mikayla was an absolute disaster. She cried the whole morning, the whole way to the airport; and the ENTIRE flight to ELS. I felt like climbing on the plane and flying straight back home... I just felt it was going to be the worst holiday ever. Miks is much happier in her own environment. She hates to travel, and I would go so far as to say that i think she perhaps doesn't like the MOTION of travelling in the car. Even a large dose of Calpol didn't help ease her, or make her sleep. So the first night she was very unhappy as well. We then travelled to see my grandparents, (Gran and Step-Grandfather) who were celebrating their 50th wedding anniversary... but something during that tiime started to change... and well, to cut a long story short, it turns out Mikayla was an absolute ANGEL during the 11 days we were away. Infact, the only really horrible days were day 1 and day 11 (er... travelling days!). She was smiley, happy... even laughing occassionally. She slept well at night, fed well, and was just an absolute pleasure.

Mum and Dad got a lady to help out so that if we wanted to go to the beach or whatever, we could leave Mikayla at home with this lady (since Miks REALLY battles outside.. she just cannot tolerate the good old South African glorious sunshine glare).. and it was on these occasions that I realised something... now hold your horses... this is big.... Mikayla really likes being around my husband and I. I mean... she REALLY enjoys our company, and attention. She would get very unhappy on the rare times we left her alone. It's almost like she has separation anxiety when we're not constantly around her.

I have to say: she was just adorable when we were away. Every now and then I would happen to be standing at her bed when she woke up, and she'd open her eyes, and the first thing she'd obviously see, was me, and she'd give me the BIGGEST grin EVER. It's a really wonderful feeling to know that she knows us. And that she really does love us. I think for a while now I have reserved something of myself. It's difficult to put your heart and soul into something or someone that you know you are going to lose sooner rather than later...and I think during this holiday I have learnt to FEEL my love for Mikayla a little more. Both a good and bad thing, in some ways.

This is a video of my husband throwing Mikayla back... she just loves it (well, she smiles like mad every time... little adrenalin junkie!)

Then below is a video of Mikayla when we had got back home, sitting outside (which is something she VERY RARELY does, as she HATES it)... but it had been a balmy summer afternoon, and we were having a braai in the garden just before sunset, so the glare wasn't too bad... she was so chilled.... sucking away on her fingers... how she gets her middle two fingers into her mouth, I just dunno... but those are her fingers of preference. Otherwise it's the WHOLE of her left hand in her mouth.

The hand thing has really made a difference to our lives... she definately self soothes a bit now. And when she gets really tired, she actually sucks her right hand, and covers her eyes with her left hand. Like this:

Then lastly, I had to post these two videos.... Mikayla very rarely laughs... and she has the cutest little laugh when she does... like a hiccup almost... but you'll have to take my word for it: it IS a laugh. She seems to find the funniest things funny. The first video, she was laughing at her Daddy when he was kissing her... it was a real spontaneous moment, that I managed to capture the tail end of... The second was of her laughing at her Daddy's beard... he rubs her hand down his chin over his stubble. Her one hand, in particular, is very sensitive... and this often does make her laugh.

The other night (new years eve), I was holding her chatting to her. I was holding her upright, facing me (she loves to try holding her head up, and manages to do it for a little longer now), and for some reason she just thought I was funny, and laughed at me 3 or 4 times. Good to know someone finds me funny... maybe I should try telling her jokes... no one else laughs at my jokes (I am REALLY BAD at telling jokes).... but maybe Miks will? There's hope for me yet....

It's those special sweet moments that make me love her so much!

We are trying again with the ce
real... I gave her cereal with apple and cranberries tonight (apparently, according to the box, it's also good for tummy etc)... I admit, I am nervous... but we're giving it a go.... all prayers appreciated :)

And my head? Ooh... lots going on in there.... too much to share on this entry. But I tell you one thing: I am GLAD 2010 is OVER. It has been a HORRIBLE year for our family. First, the daughter I had prayed so hard for, and had anticipated, and been so excited to welcome into the world, arrived not as I had expected... and with all the blessings that she is, it was still an enormous loss. Then one of my aunts (one of my mum's 3 sisters) passed away after her 3 or more year battle with cancer; then m
y mother in law passed away, and then just before Christmas, ANOTHER of my mum's sister's passed away very suddenly after having a HUGE heart attack.... she wasn't even 60 yet! Gosh, I just wonder at what point happy things will start happening in our lives? I mean, don't get me wrong, I know that we are blessed in MANY ways... but I just, ah, I dunno... I long to feel inexplicable joy... I am not sure I know what it feels like anymore to feel absolutely blessed, or absolutely happy? Then again, do even the REALLY blessed (nothing-ever-goes-wrong-in-their-lives-kind-of-people) even know how very blessed they are?

Maybe the blessings aren't the big things, but rather the small things that often go unnoticed?

My 2011 new years resolution? I don't have one... I think it's all a load of rubbish... but I am certainly hopeful of good things to come... maybe, with a little bit of luck, even to me!? *Sigh*