Thursday, February 17, 2011

Days 280 - 286 The aftermath

So, feedback on your progress post op, Miks....

Thursday, 10 Feb
Unhappy, crying.... and you were also unhappy and crying, with temperatures.

Friday, 11 Feb
So happy to see me when I arrived in the morning... it was too cute. Still with temperatures though, and not happy being moved around too much.

Saturday, 12 Feb
We brought you home in the morning. You were feeding every 3 hours, only around 70mls at the most. I anticipated an AWFUL night, because you weren't terribly happy during the day. infact, I'd go so far as to say you were ignoring me most of the day... making it known how unhappy you were that I left you overnight, not once, but TWICE!

In the evening you were really funny though... you had a bottle around 6:30pm. I then gave you a suppository (you hadn't passed a stool for 3-4 days)... and then you fell asleep. I checked on you around 8pm, and although you were asleep, you had a dirty nappy... so I ended up waking you to change it.... and then you were SUPER happy. Smiley, chatting... it was too adorable.

Then you went to sleep almost instantly, with not so much as a fuss... and, as I say, I was expecting the worst.

Well. You slept til 6:30am the next morning. Yes. 06h30am! Not one wake up. And then you started eating. And your appetite has come in leaps and bounds.

Sunday, 13Feb
Eating well. Very sleepy today. Only one wake up in the early hours of Monday morning, at 3am.

Monday, 14Feb
You're now eating almost 100ml at every feed, every 3-4 hours. And drinking lots of water in between. Your evening was a bit grumpy, so we ended up using the tube to finish your bottle.

Only one wake up, at 2am... and then only woke up again at 07h30am!

Tuesday, 15Feb
I cannot believe how much food you're eating!! You are SO HUNGRY... And you're eating it all orally!! The irony is that I was told by the surgeon (only after the op), that your stomach will have shrunk by about a 1/3, due to the balloon taking up space, and some of the stomach being used up to suture your stomach to the abdomen wall. And yet you're eating more now than EVER before.... and FAST!

The other strange thing is that your reflux actually seems to have improved?! It's supposed to be worse due to the op?

Your last feed before bed seems to be the one we're now battling with. We ended up giving you your early evening feed through the tube tonight, because you were hungry, but were fighting taking it orally. It was so funny to watch, because you were moaning, and then eventually you kind of stopped... but it was like you were kind of thinking "hang on, nothing to moan about anymore". You looked very confused! and it's really weird feeding you straight into your tummy, and then burping you... and it comes out your mouth... it's just strange!

Only one wake up. 2:30am, and then only again at 07h30am!

Your Dad and I are so TIRED!? And yet we're getting so much sleep!?!?

Wednesday, 16Feb
This hunger of yours is astounding!! On some feeds we are giving you betwene 125-150ml! I weighed you yesterday... you have put on probably about 250grams... IN LESS THAN A WEEK! And post operatively! And you're genuinely hungry... and will not settle until you've had enough to fill that little tummy of yours. You're feeding almost every 3 hours... but your feed size per meal has gone up 25-50%. You are, for the most part, comfortable, and content. Not all smiley yet.... but I am hoping it will come. You're even a little more alert, perhaps? But maybe I am imagining that?

Your granny and grampa arrived today.... granny was holding you at one stage, and you had your head kind of in the crook of her neck... and you snuggled into her.... you really did.... purposefully tucking yourself in close to her.... and it even looked to me like you were trying to touch her face.... it was really very precious to watch.

Granny also does "star jumps" with you... (Well, your arms, while you're lying on your back)... and she counts to let you know they're coming... and I can see that you're anticipating it. Your eyes widen, and sparkle, and the corners of your eyes scrunch up... it's a smile in your eyes!! But the fact that you actually anticipate it, is just lovely.

On Monday, I went to the gynae to check how your baby sibling is doing. Growth is really good. Baby is around 900g already. Kicking like mad. Your mom feels ENORMOUS! And I have 12 weeks to go still! But I have big babies... which is why I was always uncomfortable with the fact that you were so small.... it's amazing looking back how obvious all the signs actually were that something was wrong! Anyway, no use crying over spilt milk!

Sleeping last night? Not great. You had fought your bottle (seems to be the thing now), and I said to your Daddy that we needed to top you up via the tube, but he told me just to have supper first... you fell sleep in that time... so we didn't top you up... and surprise surprise (not!), you woke at 12pm, and then again at 05h30am! The midnight feed you drank around 125mls... but then you didn't want to go back to sleep. Daddy tried to banish you to the lounge, but I can still hear you... so I went and held you upright on my chest, and in about 10 minutes you fell asleep... seems you just wanted a cuddle :)... but don't think I'll do it every night... cos while I love our cuddles, I will have to put my foot down with midnight cuddles... they leave Mommy a bit of a zombie.

Well, one thing that's a given with a T18 baby.... expect to be kept on your toes!

Oh, and the most wonderful thing... via mummy's friend Kathy, I am in touch with another T18 mum in Joburg... her little precious boy, Lior, is 9 months old like you. And I just love that I can be in touch with another SOUTH AFRICAN. I love all the mommies overseas, they have been to utterly wonderful, and supportive, and at times my lifeline.... but they have access to things we don't, and sometimes I find it soul destroying to see what I am NOT giving you.... so someone else in "the same boat" as me, is quite exciting. Little Lior looks so sweet.... maybe I have a boyfriend for you.. tee hee xx

Thursday, February 10, 2011

Day 279 The firing line


Been in the hospital since 7 am this morning. Had a terrible night with you, Miks. From 12h30 til 4:30 you cried. And cried. And cried. Did you know you were having an op today? Were you saying you didn't want to? Eventually I asked your nanny to come in and watch you for an hour so I could get just one hours sleep before I had to get up and get ready for the hospital.

I can't stop crying this morning. At everything. And nothing.

You've been in theatre now since 10:33. I've been told the procedure will be 1 1/2 hours.

The waiting isn't fun. I think I'm scared. All so silly, really, because the op itself isn't major. But here I am with tears running down my cheeks. Feeling silly. A bit shaky. Have a knot in my stomach and throat that makes me want to be sick. So overboard I am sure.

I hated seeing you go to sleep under the anesthetic.

I'm scared.

A video clip of you before the op: You were already unhappy here... this is one of your moans that I hate the most... it's a soft, gentle, croaky, SAD moan... makes me sad!


Well, the operation only lasted an hour... when you came out you were already awake, and desperately hungry! It was 12 o'clock before the nurses finally fed you (they're so darn slow there.... it was frustrating me to no end!)... 9 hours without food! Shame... poor precious girl.

You have been running temps of over 38/ 39C. Surgeon said it's to be expected, as is the crying (and boy are you crying)... after much fighting, they eventually gave you more pain meds, so you fell asleep.

I am at home now- and you're still at hospital. I hated leaving you, but obviously had to come back for the boys. Plus, I am in desperate need of a nights sleep... I am no good for me, OR for you in this state!

It's been a hard day. You are remarkably strong... where do you get that from? I am not so. I know it's for the bigger good... but I hated seeing you in pain, and running temps like that (you NEVER runs temps!!). Plus, and maybe I am reading too much into this, but I always get the feeling that because you're not a "normal" baby, you get treated like a "thing". Not quite deserving of the cooing and ahhing, nor the full attention that other babies get, because they can scream the house down. The thing is, although to everyone else your cry is gentle and soft... I know it as your hysterical cry... and I hate worrying that the hospital won't know the difference, and therefore won't give you the attention that they might another baby.... I have said this so often: it is my greatest fear: that you would suffer. It would quite simply destroy me.

Anyway, as ops go, it went well. I should be celebrating. But I also know we're not completely out the woods yet.... so I am holding off on popping the champagne just yet (although, after today, a glass would go down well!)

Thank you for being so brave, Miks, when I am so weak. Sorry that you're hurting. Please know that my desire is to help you, not hurt you. I love you, and all I pray is that you are not in pain, and that you rest well... because I have no doubt you're just as exhausted as me.

I love you baby girl. Good night. Mwah! Mwah! Mwah!

A pic after the op... look at that rib cage! You can see the Mic-Key peg... really quite neat... And shame, you were half asleep... poor noonoo

Wednesday, February 9, 2011

Days 274-278 The night before

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


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

Friday, February 4, 2011

Days 266-273

So on Tuesday we went to see the surgeon regarding the g-tube op. He recommends doing a laparascopic gastrostomy. Basically meaning that they cut a small incision through the belly button, then then go into the stomach, and create a small hole through the stomach, and out the abdomen wall. To avoid "leakage", they then suture the stomach directly to the abdomen wall. He said that, as opposed to doing the procedure through the oesophagus, it's a slightly longer operation, but not too invasive (there are more invasive procedures). We will then have a mic-Key tube inserted immediately (how ironic is that?!), which is a flat little button like attachment, which lies quite flat on her stomach, and would be the entry for the feeding directly into her gut. He says it's very comfortable, and she can move freely without there being a risk of the tube coming out etc. Because we're going directly into her stomach, he also says we can pretty much feed her anything through the tube (provided, obviously, it is pureed/ liquid form).

What are the risks?

Well, firstly, there is quite a high risk of infection directly at the source of the wound... in fact, he said this is fairly common, and obviously quite treatable, provided we keep an eye on it. In some cases, the wound site develops quite nasty sores... (I forget what he called them)... which will obviously need treatment.
There is also the risk of there being a leakage from the stomach into the abdomenal cavity... obviously this can cause quite bad infection... but he seemed to say it was fairly unlikely because of the fact that they actually suture the stomach to the abdomen.
Then there are the other risks, such as her reaction to the anesthetic, her ability (or non) to come off the ventilator. Also, interestingly, he said with "these" babies (meaning T18 babies), between the ages of 9-12 months, they start to gain weight, and the added pressure of her gaining weight, puts pressure on the heart to work harder, and could equate to the heart giving out.

It's such a catch-22... we want her to put on weight, bearing in mind that she has remained at aroung 4kgs for over 3 months; but the risk of that is that it could actually cause her heart to give up. Am I killing my child?


You know, this is my take on it: I can't live for tomorrow. It's too much to think of tomorrow. And as I was explaining to Miks' nanny, in everything in life, there is RISK. I risk being in a car accident everytime I drive on the road with my children. But we can't live scared of every risk. OBVIOUSLY there is unnecessary risk- but for Mikayla: well, she's not a smiley, content little baby. She is uncomfortable a lot... and I would be too if I was always just a little bit hungry, always just a little bit sore. Even my mum pointed out: with her being so thin, it must be horrible being passed around, and moving against things... is it fair to expect her to suffer like that, in the hope that I will extend the number of days, months or years I have with her.

Like all of us, her days were decided long before she was born. And I have little control over that. And you know what? I don't WANT to feel responsible for her life or her death. All I know is that I have to think about how she is TODAY, and what I can do for HER... TODAY. As the scripture goes: "Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own" (Matt 6:34)

I love Mikayla so very much, and there isn't a day that goes by that I don't wish I could change all of this. That I don't hope. That I don't dream. But all of this is what it is. And as a family, we have to keep on living... for today... and making the most of today. Because I know that no matter how long, or short, Mikayla is with us, there will be a time when she will no longer be... and I don't want to feel like it was my fault. I have enough to bear on my shoulders already.

So we booked the procedure for next Thursday (the 10th). The doctor tells us that there is a possibility that she is in for a couple of days- I suppose it just depends on how well she copes with everything.

I am scared. I am anxious. But I am also hopeful at the prospect of the good it may bring. And THAT'S what I am choosing to focus on.

The irony is, that we may have to delay the op, because she had been really unhappy the last few days, pulling her legs up like she's cramping, and she's had a very runny tummy. We took her stool in for a test, and she has "giardiasis", which caused by a parasite in her tummy. Very easy to catch. So as of yesterday, she's been on an antibiotic. Her runny tummy ceased almost immediately... but then last night... shew... what a VERY unhappy little girl. She was sort of grumpy in the evening, but not TOO bad... although we had resorted to giving her paracetemol (so bad enough, I guess)... but she wouldn't feed. She had probably only half of what she should be having.

At her 2:30am feed she drank almost her whole bottle, which was fantastic, but at 4:30am she woke up sobbing. I could barely console her.... but NOT cos of her tummy... she seemed to have a blocked nose, and was coughing and choking and spluttering.... it was really quite frantic! I tried everything to clear her nasal passage, and eventually the only way she would settle, was on my chest. I was up for probably an hour trying to calm her, and everytime I tried to put her down, she would cry.... Eventually she let me put her down, and then didn't wake again until 8:30am!!

Anyway, so the surgeon may postpone her surgery... I am waiting now to find out.

She's also been quite... I dunno... distant lately? I don't really know how to describe it... it's wierd. I am hoping that it's just cos of the infection.... but who knows?

Sometimes I have this uncontrollable urge to wrap my arms around her, and just squeeze her, as if somehow I could protect her from the harshness of the world.... a reality she has been so subjected to, and is so undeserving of. It's scares me, when I see how MANY children have had to suffer and continue to suffer at the hands of a fallen world... I like to think that there is an extra special place in Heaven JUST for these innocent beautiful little boys and girls who got the raw deal here on earth.