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!
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