Days 408 - 411 The Big Fright

It's been a pretty hectic week. When Mikayla was hospitalised on Saturday, she went in with temps over 40C, her heart rate was well over 180, and her O2 levels sitting around 70. She was very sick. They have had to constantly suction both her lungs and nasal passages to take out all the muck, and try keep it out of her lungs. Effectively she was diagnosed with bronchial pneumonia. Saturday was really horrible. It was really scary to see her so sick.

By Sunday morning there was a marked improvement though, and everyone was really happy with her response to the treatment she was receiving. She was obviously still weak, and unhappy, and still very sick, but certainly looked to getting better.

But then Monday arrived.

The first thing my husband noticed was the colour of her tongue. It was a very dark purple/ blue... almost black. Her jugular vein was more pronounced than normal. Her sats kept dropping, and her HR was high. They were concerned with her elevated HR because it was aggravating the fluid build up. She was also really very out of it. Every time I touched her (like trying to lift her), she would cry (a painful, sad cry). The pediatrician indicated that the tongue was a possible sign of possible cardiac failure, as was the enlarged jugular, and was very unhappy. Mikayla's upper right lobe of her right lung had also collapsed. The long and short of it, was that she felt Mikayla may not be able to fight this, and there was a chance we would have to start saying our goodbyes.

It was horrible. I think I went into mild shock, and perhaps panic too. I wasn't prepared for this day yet! It wasn't supposed to happen like this. I needed more time. I kept thinking: What if this is it? What if I don't ever see her smile again? I didn't take the time to really enjoy the last smile I DID see... to cherish it... to remember the moment! I needed that moment... and now it may be gone, and I may never get another chance! I just couldn't bear it! I mean, how do you EVER prepare yourself for that moment?

And then Tuesday arrived.

And suddenly she seemed MUCH better. Granted, the lung was still collapsed, and she was still on O2; but she started maintaining her sats around 90-100 and her HR was at normal levels around 130-140. Her colouring in her face was much better, and her tongue colour had marginally improved, and she was more alert and more comfortable. A complete 360! Today was much the same, and infact, she is even better. Granted, she is still on the O2, and her lung is still collapsed, and she is still fighting the pneumonia... but she looks like SHE is now fighting too, rather than just letting the drugs to the work. She had her hands in her mouth today, and was reaching out for her toys (the best part of this is that her left hand, which is the hand she tends to favour for reaching out, is "unusable" because it is bandaged up as that's where they have the port for the intravenous antibiotics and whatnot.. so she is using her RIGHT hand to reach out... her PT would be chuffed!). She is starting to look like our little Miks again. Not quite smiling yet- but is far more responsive, and clearly more comfortable.

It's been such a roller coaster week. We're not completely out the woods yet. Mikayla still has to be weened off the O2, and keep her levels up herself. Her tongue is also not quite it's normal colour. I'd like to up her feeds a bit- because she is currently on 50ml every 2 hours (not sustainable at home!) (she was on 125ml every 4 hours, with solids in between). And obviously the lung has to repair itself. But we have certainly turned the corner (and a big one at that!).

At the end of the day, this is Mikayla's story- and she obviously hasn't quite finished telling it. I am still convinced some days that people think I make these things up!

My little princess warrior.... you're certainly keeping things interesting!

Day 407 Hospitalisation

Poor little girl is very sick

Last night wasn't good. Officially, it was a "good" night, in that she only woke once. But during the course of last night, she changed... she was no longer crying, but started, actually whimpering. We couldn't get her to keep much food down... even when we used the peg. She was so exhausted, and yet she wouldn't/ couldn't sleep.

I went to her this morning.. she was covered in phlegm- it was even in her hair! I bathed her, and gave her half a feed in her peg, but she vomited it all up. We tried contacting the doctors- my feeling was hospital, but I wanted to check what the doctor said. Anyway, I couldn't get hold of anyone... so I took her temperature, and it was 39.2C!!! So Russ whisked her off to the hospital this morning. Russ has been great- and has spent the whole day at the hospital- helping with feeds, helping hold her down for medication etc.

Effectively they are treating her for bronchial pneumonia. She is on 2 antibiotics and something for the fever (it was over 40C when she arrived in the hospital!!). They are suctioning her nose and lungs, as well as physio. They are also nebulising her. They have also had to give her medication for her heart, because even with them having brought her temps down, and putting her on oxygen for her sats, her heart is still beating wildly... the problem with this is that with her heart lesions, the wild heart is actually causing more fluid build up on her lungs, which is what they have to get under control.

She goes from being very distressed, to being quiet and lethargic. She is very tired, but is battling to sleep, because even on the oxygen her breathing still isn't great, and her oxygen level was dropping well below 85. Russ says she seems confused...

I haven't been able to be there, because I can't take Jude, and I obviously have to be around to feed him. The second time I went in to see her, this afternoon... I said hello to her, and her head WHIPPED around to see me... and while I didn't get a smile, she seemed to be trying to talk to me.

I am scared. Mainly because she has been so strong... and has never had to be hospitalized (except for the op for her peg)... so her rapid decline from a snotty nose to bronchial pneumonia - it was less than 48 hours from zero to hero - has been quite a shock. And because I can't be there, I feel like a bad mother. She is probably scared, and in a very unfamiliar surrounding, and of course I just hate seeing her suffer. And for her to go from a loud moaning, to a whimpering, is really an indication of how terrible she feels.

The pediatrician is doing everything possible- and covering all bases. And the nurses are of course lovely. It's going to be a tough night- cos I can't be with her. I love her, and I am trying to be positive. But it's hard. I am also trying to trust that this is all in God's hands... but really am feeling a bit like I have "ostrich syndrome".... (or would like it, in any event)

Mikayla has always been such a fighter... despite us. We've obviously treated her for stuff as and when she's needed it- but invariably she rarely ever needs anything, and has certainly never needed hospitalization. But I have noticed that every time she gets a little more sick than the last time, and takes a little longer to get better. But this is full blown. I feel so out of my depth. But she's in the right place.

I guess I can only trust that God's plan will prevail, and that he'll give us all the strength and courage to deal with what lies ahead... whether that's Mikayla, or us, or both.

I love you baby girl.

Days 405 - 406 Sick little girl

To say the last couple of days have been difficult is the understatement of the year! Mikayla has been very unhappy. Yesterday we took her to the pediatrician after having a pretty hectic night... And he basically just said it was congestion,- it was viral, and we would have to wait it out. Well, last night she was horrific. Waking often, not wanting to feed, very bunged up, etc. So we took her to the doctor today (both pediatricians, plus both docs had I previously seen were ALL not around!! How's that for luck?)

Anyway, he basically said that it's an infection, and is in her right lung. She is now on a medley of medicine, including antibiotics. My worry is that she is so clogged up.. She won't eat, and is vomitting up feeds we give her in her peg. She cried for 8 1/2 hours solid today. She won't sleep, even though her poor little body is completely exhausted from all the coughing, sneezing and wheezing!

Not sure what night we'll have.... All I can say is that I HATE seeing her suffer like this. It is so very very wrong!

Days 402 - 404

Mikayla is finally growing out of some of her clothes. At 13 months, she is now out of newborn sizes, and is wearing 1-3 months... in the slightly bigger sizes of that age category. So I've started collecting all her old clothes and putting them aside.

But I can't throw or give them away. I have absolutely no need for them, obviously. Jude will look silly in pink (and besides, he's ALREADY too big), and we're certainly not going to have any more children... but... I can't do it. It's like I'll be closing a door on my life... FOREVER. Since as far back as I can remember, I have wanted a daughter. Pigtails. Ponies. Fairies. Pink, pink and more pink. And along with that desire for a daughter was all the things we'd do together. She'd tell me about her boyfriends (Ja, as if!! ... but I can dream, can't I?), she'd emulate me when she was 7 (like I did my mum), I'd paint her toe nails, and she mine (weird, I know.. but it's a girl thing!)... we'd do all those girlie things... and the biggest of course would be that I would watch her Dad, both her and my hero, walk her down the aisle. But the day I throw out those clothes, I am officially closing that chapter. Look, I know... it's already closed. But I just cannot bring myself to officiate it yet. I. Just. Can't. Do. It.

Mikayla has been doing this very strange thing. She has found how to grab her pinky of her one hand with the other. But she grabs it, but then twists and squeezes it.. and she seems to do it to get to sleep. The problem is that she HURTS herself...and ends in tears. So we put a sock on that hand to prevent her from hurting herself. BUT now she has started hurting her OTHER hand... she presses her hand up against her face, so that she pushes her thumb and forefinger against her face... so she hurts her hand and her face... so now she has a sock on her other hand. She looks quite funny with two socks on her hands... and of course, she chews like mad on them, making them soggy... giving "put a sock in it" a whole new meaning :)

We have started Physical Therapy with Mikayla. She loves the therapist, and really does try very hard. At the moment, out first goal is to try give her more head control, and loosen up her hamstrings and lower back, in preparation for sitting. So watch this space.. in the therapists words "Mikayla might just surprise us all"!

Days 389 - 401 Chaos Reigns

Well, the last couple of weeks have been... erm... interesting.

You have continued to be on and off... still sweating at strange times... happy the one minute, really unhappy and snotty the next. About a week ago, we whisked you off to the docs, and he picked up that you had a chest infection. We put you on straight penicillin... it seemed to work really quickly, which was great. And you seem ok- but, as I said, from time to time you still get snotty and sweaty. The unpredictability of it does make it very hard to keep a tabs on- so we can think all is well, and then suddenly at 4pm you're inconsolable. The other night we had one of your 3 hours of crying stint... in between that you vomited up all your milk, and had a snotty nose. And then the next day you were bright as rain!

It's been pretty chaotic. Dad has been away most of the week... and taking care of all 4 of you has been quite trying on me. You're mostly good as gold.. although I have had some interesting nights of you being relally miserable... and dealing with you crying for 3 hours, and still being able to breastfeed your brother, when I am on my own, has been, well challenging!!

The good news is that you're still growing! You love your solids... I just think your tummy isn't big enough to take more, although I think you'd love to have much more :). Weighed you this morning... 5.12kg!

This morning, your brother decided he wanted you to sit with him. So he picked you up, and put you on his lap... he really does adore you, and is so sweet with you. And you adore him straight back. So proud of him :) Here you are watching TV together... look how he holds your hands... and you're watching the TV... so sweet....

Me and my big (but not biggest) brother watching TV together