Days 274-278 The night before

So tomorrow is the big day, Miks. We go in for your op.

*sigh*

I am not sure how I feel about it all... firstly I guess I am horrified at the fact that the op is only at 9am, but you are allowed no food after 4am, and from 4am to 7am you're only allowed clear liquid, and then the last 2 hours before the op, you're allowed no liquids whatsoever. In part, I cannot think beyond that. At the best of times you are inconsolable... but you're going to be hungry, thirsty, and inconsolable... argh! I can feel my heart racing already at the thought. The sound of you crying sends me into such a fluster! I am really concerned that those few hours are going to be HORRIBLE!

You certainly have given us reason to want this op though.... the last couple of nights. Last night you cried for almost 2 hours, the last hour you were absolutely hysterical! So was I! There we were, mother and daughter, rocking away, both crying our eyes out! Not a pretty sight! Your nights have just gone pear shaped... it seems all good, until around the late night feed... and you feed ok, but just cry and moan and cry. Your Daddy and I are pretty finished... I love you dearly, but frankly, this is getting ridiculous... I am battling to function, let alone keep my sanity.

I know I am hoping for a small (or maybe BIG) miracle: but I am really hoping the g-tube will help with your contentment and therefore ours. I cannot understand how, while perhaps you're not always really unhappy (as in crying), you're certainly not content... it suggests that something is wrong, and I guess the only way to try find that something is by a process of elimination. So the g-tube will hopefully help eliminate the issue of getting sufficient nutrients and liquids. I realise it may present us with a whole plethora of other problems... for example, the surgeon said that it will make your reflux worse, so he will be prescribing medicine for this... but, perhaps it won't. And unless we try, we'll never know.

I am not sure what to expect. I feel terrible that I am going to let them cut you... you're a tiny, delicate little thing... I just feel horrid about it... but I also understand that I am primarily doing it for you (with the offset that hopefully we'll also benefit from it). Perhaps I am not thinking about it too much... and then, if I think about that, it worries me that perhaps I am being a bit blase about it? *sigh*sigh*sigh*

I want to say so much to you. I wish you could understand all that I have to say. Just know that I love you. Very much. And I'll be waiting in the waiting room for you when you come out.

Love your mommy

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!