Monday, May 31, 2010

Day 24

Sleeping beauty

Well, Mikayla was a SUPER star last night. She slept right through from around 10pm til about 4am. She has been a sleepy little critter today as well... and rather grumpy when awake. But seemed to be much more alert today. This afternoon I was singing to her... and she seemed to calm down and listen to me. It's so frustrating not knowing how much she can hear or see. Sometimes she seems to absolutely see me... and then other times, it's like she looks straight through me!

I was saying to a friend today, that in all of this, the thing I find the hardest is the not knowing, and the lack of control. I know I have said it already: but it's a hard thing, particularly for me, a doer by nature... a get up and go person.... to suddenly just be DOING nothing!? Never has the reality of leaving something in God's hands so real to me. We often say "well, I am trusting God for this or that"... that we're "handing things over to him".... but until you CANNOT maintain even an iota of control over something, do you actually understand what that means. And let me tell you: for me, it's pretty hard. That's not a faith thing. It's not that I don't believe in His ability, or His plan, and trust ultimately in His will.... it's that suddenly I cannot have the least bit of control.... nothing at all. It's a really humbling experience.

Having my winds... a rather undignified thing for a little princess!

I was told a lovely story about a little boy, who, upon his parents bringing his baby sibling home, asked to be alone in the room with her. The parents agreed, but were concerned about why, so they snuck up to the door to keep an eye on their older son. Upon doing so, they saw him run up to his baby sister, and whisper to her: "Because you were the last person to have seen Him.... what is Jesus like?". Oh... to see the world through the eyes of a child!

I was a very brave girl today. I went out and left Miks to sleep at home instead of taking her with me. I am rather proud of myself (I did call in and check on her though)... was rather un-exciting, as I just went grocery shopping... oh, and to buy some fat clothes! I can no longer live in denial!

I am a messy eater! And look at my chubby cheeks!

Next thing to do is to find a nanny-come-cleaner... for those of you who don't know: on top of all this shock of my poor little girl, is the fact that the lady that worked for me had to go off on early maternity leave when Miks was a week or so old... oh, and the cherry on the top, is that my engagement ring has gone missing.... I am trying NOT to have a sense of humour failure :-(

Sunday, May 30, 2010

Day 23

Well, after a ghastly night last night, I am afraid I bunked church this morning! Russ went, but I tried to get some extra sleep- after dealing with a super grumpy little girl last night. Was bummed I didn't go to church though... I realised last week how much I had missed it.

I had a fairly uneventful morning. Have started to do some serious spring cleaning, what with us moving so soon. Besides, it's one part of my life I can control: cleanliness! When everything else seems to be spiraling out of control, I still have my broom and mop :-)

No apnea episodes today *phew*... Mikayla has been really "snotty" lately. She sounds pretty chesty, although I know it's just a build up of mucous due to her tiny little features. I do put saline solution up her nose to help moisten her nose, to help minimize mucous build up, and I also put Olbas on her bed every night to try help her breath, as well as a humidifier in her room every night. On top of that I try keep her warm at all times. I am pretty paranoid about her getting sick. Nothing really seems to help, although I'll still press on.

Russ weighed Miks today. Ok, she did have her clothes on, but she is weighing 2.8kgs now. She has made up over 400 grams since her pediatricians appointment a week ago! Clever girl!

Mickey being harassed by her Daddy with LOTS of kisses :-)

We took the boys to lunch today, with Miks in tow. We bumped into a couple people we knew.

You know, the strange way people treat us really irritates me at times. For goodness sake! I haven't changed one bit. You can see they know about Mikayla, but don't really know what to say... and unlike when you have a healthy child, and everyone wants to take a peek and ooh and aah after the baby- they avoid asking to look into Miks' pram like the plague. I have taken to opening the pram up so that they can see her the minute I see people who haven't seen her. And I don't know what people are so afraid of? Are they afraid that she's some kind of monster?? She is just a sweet, innocent baby girl.... who has been betrayed by this broken world! Gosh, sometimes I feel I should just become a hermit and avoid everyone. It would make it so easier for them, and for me! Would the world even notice if I wasn't around any more?

Saturday, May 29, 2010

Day 22

We didn't have a great start to the day today. First off, Miks didn't have the best night. At her 11pm feed, she was awake for nearly 2 hours, and was very unhappy. Eventually she did fall asleep, but it took some coaxing to get her there.

Then, this morning, Russ took the boys to Luke's school, where Luke had a mini soccer tournament on. I fed Miks, burped her as usual, and then, after we had some chattig time, I took her to her room to "top and tail" her, and dress her for the day. While I was changing her, she had an apnea episode. I am no sure how long it lasted for... maybe 30 or 45 seconds? Maybe a little longer? I rubbed and patted, but seemed to be to no avail... so I gave her mouth to mouth. I am not sure if that's what helped, but she did come around.

Then, not 3 hours later, I Skyped my brother in Australia. While we were chatting, I was holding Miks, and I glanced down to see that she was bright purple... another apnea!! I couldn't believe it. My poor brother- I think HE got such a fright (never mind me!!). More rubbing and patting, and more mouth to mouth. Then 10 minutes later another one!!!! It was pretty scary. I sat with Mikayla after the third one for a good half an hour cuddling her. She kept having these strange shaking things- like a really bad cold shiver? Maybe that's exactly what they were, although she was wrapped up quite warmly.... but I was pretty much terrified that she was going to have another episode without me there.

As time goes on, so we become more accustomed to our situation, and Mikayla's condition, that we seem to just be fine. And then, like now, I just get so terribly sad. Sad for everything I dreamed of for Mikayla. Sad for the little girl who she will NOT be. And sometimes it is simply all consuming. I cannot describe the feeling.... it just feels like my heart is literally breaking into little pieces... over and over again- it's a very real tangible feeling.... it actually hurts me physically. I see other little girls the same age as Mikayla, and already can see how she isn't developing like them. Or I see older girls than Mikayla, and know that she will never progress to what they are. Then I rebuke myself for comparing my daughter to other people's daughters, and the statement that one should never compare your children to other people's children becomes that much more pertinent. But how can I not compare? I still want that for my daughter. I want to see her run. I want to see her laugh. I want to see her smile. I want her to be everything she can be and more. Is that wrong? I think I wouldn't be a mother if I didn't desire the best for my daughter. And she won't have those things. It doesn't seem fair. And yet, what about life is fair? God never said things would be easy. There is no guarantee that things will be fine. There is suffering in the world. I happen to be going through trials... but if I step back and put it into perspective, the reality is that there will always be people better off than me, and people worse off than me. My reality is what it is. And it hurts. But I am blessed with an amazing husband, two wonderful, bright, healthy boys; and a sweet little girl, who God has loaned to us a little shorter than the next person. Ultimately all children are only on loan to us anyway... we get arrogant and think that they're OURS , but we all belong to God. And our lives here are determined by Him long before we took our first breath. Mickey has purpose for her time here. One day maybe I will see it.

And maybe one day it won't hurt so much.

Friday, May 28, 2010

Day 21

Mikayla came on an outing with me this morning to go watch Luke run "mini comrades" at school. Miks was a real star... and the gals were loving holding her and cooing over her. She was pretty sleepy. She hasn't fed brilliantly today. She's been quite sleepy, and then was really grumpy this afternoon. I am not sure why... although I am pretty convinced that it's her tummy that is making her unhappy. And Luke ran well.... not a terribly sporty oke, my Luke, but I was SUPER proud of him anyway!!

We had a movie night tonight with the boys, while Miks slept. We watched the Princess and the Frog... very cute!

And me? I have had a good day today. Feeling stronger and more able to cope.

Thursday, May 27, 2010

Day 20

Job loved God despite his circumstances. I am learning to do the same. As the song by Hillsong goes "All of my life, in every season, You are still God, I have a reason to sing... I have a reason to worship". I will worship You, God, despite the feeling that everything I had wished and hoped for seems to be crumbling around me.

A friend of mine today spoke about the "Chaos Theory", which is basically that amidst the chaos, like in times of tragedy, everything seems random and chaotic. But that as you step back from the chaos, so you see the order of things. The divine plan. The meaning. That, really, there is no randomness. So one day I will see the order of this. I certainly already see how Mikayla has touched lives, and how
humans have an enormous capacity to love. God calls us to love one another. And when a child in particular is affected, it becomes so easy to show that capacity for love, because of the child's unquestionable innocence. But I have also learnt how important it is to reach out to people around us, and, as a friend said, we should never suppress the urge to reach out and touch someone, particularly in times of tragedy.

This friend has also gone through great loss. She lost her baby at 24 weeks, due to a placental disease. I feel so immensely sad for her. But also this rather sick feeling of... envy? I know that's an AWFUL thing to say, as what she is going through I wouldn't wish on anyone.... but what she has, that I don't have, is closure. I know I can't live waiting for tomorrow, and have to enjoy today, and I am trying... but I can't help but wonder what tomorrow will bring.... and when will it come? Living with such a sense of not knowing... all the uncertainty, is quite overwhelming at times. Especially for me!

Mikayla has been a star today. She is eating so well. The only thing she seems to be battling with, other than her labored breathing from time to time, is that she seems to take forever to poo. And seems really uncomfortable until she does. I try massage her tummy, which does seem to help. I tell you, when she does poo.... it all comes out! She does only about 1 poo a day. Not sure if that is normal for bottle fed babies? I shall have to find out.

Am going to have a chat with a neurologist, to find out if he can tell at this stage how well or unwell Miks' brain is....

Shew! Am tired from this lack of sleep.... par for the course, I suppose :)

Wednesday, May 26, 2010

Day 19

Miks "kished out" on Daddy's shoulder

Well, last night was a NIGHTMARE!! We decided that Miks needs to be in her own room, because Russ and I need to have our sleep. so the last two nights have just been awful. Just like any newborn baby, Mikayla quite likes being alert at 2am... and wants to be held. And, as any mum and dad of a newborn knows, at that time the parent is pretty pooped... and sense of humour goes out the window.

I had an old friend of mine visit today, which was wonderful. Miks was quite alert today- she gets more and more wakeful by the day. And her feeding is amazing! She eats between 50 & 75 mls per feed. And tonight she actually had about 100ml... probably not ideal for her tiny little tummy, but she has these little power feeds occasionally! And I just try and go with the flow.

Miks and Mommy

I kept thinking today that she seems so normal. How is it that she can have this ENORMOUS problem with her body, that affects her ENTIRE body... every single cell.... and yet, seem pretty much normal.... I know the genetic councellor did say that we would notice it when she failed to thrive.... but Miks seems to be putting on weight. She is becoming more alert. She has had no more apneas.... infact, the only thing that gives it away are some of her physical features. But so what? We're all different anyway?! She just doesn't seem SICK? I guess that's part of what makes this all so difficult.... the only "sick" thing about her is that her breathing is sometimes quite labored, which I attribute to the high pressure on her lungs. But that could sort itself out... couldn't it?!

I just feel so helpless. I am a doer by nature. A fixer. A go-getter. A fighter. And yet there is nothing that we can do. It makes me feel so inadequate. A failure. It's a difficult pill to swallow.

Look how fat my cheeks are getting

Holding Daddy's hand (er... finger!)

Day 18

Miks and I had a pretty busy day today. Our start to the day wasn't great, because Josh isn't well. He was nearly hysterical, saying he had a headache. There is measels going around at the moment, so I am of course a bit panicked, because first and foremost I don't want Josh to be sick, because I am concerned about HIM, but also because we obviously worry about Mickey picking something up. Her little body, from what I have been told, simply doens't have the capacity to fight the way a healthy baby might- and even in a healthy baby, measels is pretty disastrous!

So the first thing to do was get Josh comfortable at home, and make a docs appointment for him. Then Mik and I went to see the psychologist. Miks was a real little star at the appointment Slept through pretty much the whole appointment, just waking up when it was time to go.

I must say, I think it helped a bit going to the appointment. Just having a sounding board- and getting to say pretty much anything, without fear of judgment, and without the person on the receiving end feeling the need to console me, or help me, as friends would naturally want to do. I learnt a few things while I was there. I won't go into all the details, but the one thing I realised, is that while friends have been wonderful and caring, their need to console me, actually confuses me, and makes me question myself, and my decisions in terms of Mikayla's condition. Because most of the people I speak to simply don't understand the nature, and perhaps the severity of the condition, they will often trivialise the matter. Now, that's not a critisizm of the friends and family who have given me well meaning advise. I appreciate their concern and love. But the reality is that this will only ever be REAL to Russ and I, because until you go through something, it is simply so difficult to understand and relate to it fully- particularly something of this nature. And thank goodness I haven't come across lots of other people who have gone through this. It's hard, and I wouldn't wish it on anyone.

The reasoning and intellectual side of me knows that decisions I make I will have to stick to, and the most important thing is to not question myself, because when I do.... well, that's when I fall into the pit of depression!

Tonight, I had a major meltdown. Another friend is having a baby girl!! I am so excited for all my pregnant friends.... but they are all a reminder of my loss! And that's the other thing I have come to realize: everyone says that I shouldn't grieve for Mikayla while she is still here. And they're right to a degree.... but what I have realized is that my grieving is not for the Mikayla who is with us, but rather for the dream I had for my daughter... the life that I had hoped for her, which will never come to pass. That dream, that desire, that I have carried my whole life, is gone, and THAT is the loss I grieve. But I am trying not to grieve for Mikayla. Because yes, she is here, and yes, she is my daughter, and yes, I love her, despite her condition.

Monday, May 24, 2010

Day 17

Well, today was the first day with Russ at the office pretty much the entire day, and Miks and I on our own for the morning, until we fetched the boys.

Mikayla was really alert today again- which she will become more and more alert as she gets bigger (erm... that's what babies do :)).

No apnea episodes at all today, which I was relieved about- don't like that sort of thing happening when Russ isn't around! Fairly uneventful day, really :)

Sunday, May 23, 2010

Day 16

Well, this morning we held Mikayla's dedication at church. It was an amazing service. I was so proud of Russ- he really is such a strong, amazing man... and of course the absolute love of my life. How I ever existed without Russell, I will never know. He is just wonderful!

Mikayla was so alert for the dedication as well.... was a real little grumpy thing too... ok, it was during her feed... but she was still a little star. I was uber proud of her! And everyone kept saying how beautiful she is.. well, of course!!!! My mum in law prayed that she kept thinking of the song "All things bright and beautiful"- I loved that. That is my little girl: bright and beautiful. Friends came and shared in the occasion- it was amazing to see how loved this little girl is, and she is only 16 days old!! Amazing how it is not our years of life that make the impact on the people around us.

We came home, and Russ popped out to get some lunch, and my mum-in-law was with me... I was changing Mik, and she has another episode where she stopped breathing. This time it was longer- and took much more for me to resuscitate her. Again, it was terrifying. I really am living on tender hooks. And then, again, tonight, she hasd another episode. Each time seems a bit worse, and a bit longer.

I keep wondering if this is it? Is Jesus getting ready to take our little girl home? Am I ready to let her go? How will I survive this?

Mikayla, my darling precious angel: words will never convey just how much you mean to me, and how you have changed my life. And nothing... NOTHING.... will ever be the same. You have shown me the meaning of family. The meaning of life. The MIRACLE of life. And, as Russ spoke about: we should treasure every day. We simply don't know what tomorrow holds. You are my miracle child.... and everyday that I spend with you, I am better because of it. I love you.

Saturday, May 22, 2010

Day 15

Had a rather hard day today.

My first fright was this afternoon, when Mikayla stopped breathing. She went completely purple. SHe didn't seem to try to breath either, but the air simply stopped going in and out of her little beautiful nose (babies cannot breath through their mouths, so nose is where you look for those little breaths). After a lot of rubbing and bouncing, she started breathing again. But it was a really terrifying experience.

Then, in bed in the evening, she was lying on Russ' chest, and she stopped breathing again. It is really frightening for me to watch. I am completely terrified first and foremost that Mikayla is in pain. She does remain very calm though, so that indicates that perhaps it isn't painful, and once she starts breathing again, she isn't terribly fretful. She is first very pale, and then makes soft gurgling sounds before drifting off to sleep. But the other thing that worries me, is if she is losing oxygen to the brain, it could obviously be detrimental to her brain functioning.

Of course, what it is also creating is a sense of suspense in our lives. I spent the whole day and day, in a kind of "held breath" state... waiting for something to happen. I also don't want her out of my sight. If she goes, I want one of us, or perhaps both of us there for her. I don't want her to be alone. Of course, I know that ultimately she is not alone, because I believe that when she leaves this world, Jesus will be there holding her hand to take her to heaven, but the human in me, is still afraid of her being alone, or afraid. She is, afterall, my daughter, and my first reaction will always be to try and protect her, nurture her, and comfort her. That's what mothers do!

Friday, May 21, 2010

Day 11 - 14

Well, the days have gone by, and Miks is still doing well. She feeds well- seems to chow down extra before bedtime, which is fine. We routine feed her, interspersed with a certain amount of demand feeding. It works for us!

She continues to sleep in our bed. A real shocker for me- I have always been dead against my babies sleeping in my bed! We tried 1 1/2 nights of her sleeping in her own bed. But, frankly, it was a disaster. She was so restless, we were up and down 100 times... it was exhausting. At least if she fusses in bed (ours) we can simply calm her while staying where we are! Way better option (but shhh... don't tell anyone I said that!).

She has had some amazing alert days. She seems to know our voices- and will follow the sound of Russ' voice as he moves around the room. The other day I put her mobile on, so that she could listen to the music, which seemed to calm her (not that she is a fretful baby, but still). Then, we actually put her in the cot under her mobile... and she actually followed the movement of the mobile with her eyes, as it turned around and around. Amazing!!

On day 13 we took her to the pediatrician. Doctor said that her heart has no sounds of failure, and overall she is very happy with Mikayla's progress. She hasn't yet got back to her birth weight. She is currently weighing 2.38kgs. But we can see that Miks has put on weight. Mainly by her cheeks... they have got quite chubby! And very kissable!

Doctor has asked us to talk about certain decisions we need to make going forward. Because T18 is not life sustaining, and she has a propensity for picking up illness, which they think we affect her upper respiratory functions, we need to think about decisions such as how much and what kind of treatment we give her, at what point we intervene, and at what point we stop intervening. It was a really difficult conversation... ultimately it's like we're deciding on the life and death of my daughter!! It's wrong!! *Sigh* I just don't know that I have the capacity to handle this. I know God says He won't give us anything more than we can handle..... but the truth be told.... this is destroying me.... inch by inch.

Doctor has recommended physio for Mikayla to keep her joints flexible. They don't want her muscles to shorten, due to her pulling her legs and arms in- it will make Miks uncomfortable, and will make changing nappies etc for us difficult. A friend of ours, a physio, came around and did a session with us, to show us how to do the physio on Miks. Miks was so good. She was relaxed throughout the session, and was super relaxed afterwards. What a cute little chicken!

Monday, May 17, 2010

Day 10

Today was good. Mikayla was really sleepy... which is not surprising when you consider she was rather quite awake most of the night... she definitely has her day/ nights swapped around.

I had a great talk with a good friend of mine in Johannesburg. It was good to just pour my heart out a bit. I feel terrible off loading on Russ all the time... he is so strong, but it must be hard being so positive amidst all the uncertainty, and topped with that, the pessimist of note (being me!).

I also called the genetic laboratory today, where Miks' tests were done, and spoke to a genetic counselor. It was just good speaking to someone who knew and understood the facts; who didn't sugar-coat the truth to try "make me feel better"; and who immersed the conversation in the reality of what it was, rather than the maybes and possiblies etc. She said that 60% of T18 babies don't make it beyond the first 21-30 days. 90% don't make it to their first birthday. Interestingly, I thought it was the major defects of these babies that determined their life expectancy; but she said that while those play a part, the reality is that the extra chromosome simply puts the body out of balance; and that challenge of the bodies equilibrium simply causes it to be unable to function properly. She also said that if a T18 baby does survive, it is severely mentally and physically retarded... and as callous as it sounds, I quite simply do not want that for my daughter. I would be keeping her alive then for me... not for her.

She also pointed out that a baby like MIkayla will at 2 weeks, be like a 2 week old baby, but a month from now, will not have progressed much beyond that. So the gap widens. And it's her failure to thrive, that will indicate her little body slowly giving up.

Now that may sound like all doom and gloom- and neither are realities I desire... but I would rather know the facts, and prepare myself accordingly, than lull myself into a false sense of hope. Afterall, my pregnancy was just that: a false sense of hope... and when the reality came upon us when Miks was born, it was such a shock... SO raw, that I simply couldn't have two of those kind of "encounters".

Tomorrow I am going to phone a psychologist. I think I should talk to someone about these things who will have a really objective, and professional view.

Mikayla was again really sleepy today. She had some lucid episodes, but was overall sleepy. Her feeding isn't great. She eats, but I don't think that she actually eats enough. She does seem to have put on weight though, and even her legs aren't as stiff as they were. So I think overall she seems to be doing well. My little angel.

We've also decided to dedicate her at church this weekend. It's not going to be easy for me....

I read somewhere that God only gives very special children to very special parents.... and while Mickey is definately a special little child... I am not sure how special we are. But we do love her. And we want the best for her. That's the only thing that matters.

Sunday, May 16, 2010

Day 9

Well, last night was definately a better night. She slept alot better. She had a little top up feed just before she went to bed, which I think is what helped.

We had a relatively quiet day at home, with one or two visitors popping by. Miks wasn't very lucid today- was very sleepy, and quite, well, floppy?! But nothing too dramatic happened.

Am feeling slightly anxious about tomorrow, when Russ goes back to work. Not because I think I won't cope- she's such a good quiet baby... how can I NOT cope.... I just hope "something" doesn't happen during the day.... I am not sure how well I would cope with that!

Saturday, May 15, 2010

Day 8

Her first night at home last night.... hmm... it was interesting.

She slept most of the day, and then decided at 9pm, when we were heading for bed, that she quite fancied being awake... WIDE awake!! And spoilt little girl she is. The boys, from day 1, were in their own rooms, but Mikayla slept slap-bang in the middle of us. And when she gets fretful, Dad picks her up for a chest cuddle.... her favourite place to be is on daddies chest! We have also come to realise that she is quite a fussy little miss.... she gets to a point where she starts spitting out her bottle.. now, sometimes, it's because she is full, but we have come to realise that she will also spit the bottle out when the milk gets too cold! She is her fathers child :)

So we didn't get much sleep last night.... but the first night is always the hardest.. I do remember that much.

Then, today, we went along to Luke's school, to watch Luke play soccer, and see him sing in the choir. I REALLY chose my day to be out and about. It was pretty exhuasting. Bumped into SO many people we knew, and lots of well meaning people, who don't know about Mikayla's condition coming over to have a peek at her, and congratulate us. Their comments are pretty much always the same: "she is BEAUTIFUL... and SO tiny.... a little doll!". Then there are the questions on how the birth went, and how wonderful it all is... and it takes everything in me to resist the urge to tell people that, well, actually, it's been pretty much the worst week of my life... and, oh... by the way.... Mikayla may not make it to one year... infact, she may not make it to tomorrow!.... but instead I smile, and say thank you.

Josh and Miks

The boys are just adoring Miks as well.... they love feeding her, touching her, holding her, talking to her, cuddling her. She is a very loved little girl.

Luke & Miks

And me? I still keep hoping I will wake up, and this will all be a dream.... I am so very very sad.

All my beautiful children

Friday, May 14, 2010

Day 7

Mikayla is home!!!! Yay!!!

It was a bit of a mad morning, rushing around getting bottles, and sterilisers and all sorts of odds and sodds that we didn't initially think we would need. While we were shopping, they did an X-Ray of Miks' hips- the paed was worried that they were dislocated... but her hips are just fine. They're a bit stiff- but we'll discuss possibly physio with her from the end of next week.

It has been WONDERFUL having her home. Tes & Dyl came over for tea- and everything seemed, just, so... well.... NORMAL. It's during those moments when I think... well, everything is going to be just fine.... and then I remember that T18 doesn't seem to offer such blessings :(

But she is home with us- the boys love having her... I love having her.... it's just great to be a family, like we had planned.

I gave Miks her first official bath... in the sink :) She seems to have a really sensitive head, and didn't enjoy having her hair washed.... but she didn't seem to mind too much having her body submersed in water.

I am worried about how she will sleep tonight, and if she will wake enough, and be vocal enough during the night for her feeds.... *sigh*... we'll just have to see what happens. Quite nerve-wracking, really!

I am just so happy.... I feel like I am floating! My baby girl is home, in her cot, with her family, where she belongs. And I am just madly in love with her :)

Thursday, May 13, 2010

Day 6

Mikayla had another good night last night. The hospital are basically just feeding her and changing her- she really doesn't require any more "work" than that! She is such a good little baby- she sleeps alot- probably more than most, but she is still very newborn, and newborns are very sleepy in particular in their first two weeks.

We spent some time with her this morning, then Russ and I came home for a nap. Quite honestly, this back and forth-ing from the hospital is terribly exhausting. We went back again in the afternoon, spending time feeding her, gazing at her, and cuddling her.

We were about to leave, when the sister told us that the genetic probe results had come back, and that the doctor would be coming to discuss the results with us in the next hour. So we had to wait a gruelling hour an a half to speak with the paed about the results.

The results were as expected really. It is confirmed that our precious little MIikayla has full blown Trisomy 18. We are shattered! It's weird, deep down we knew that that would be the case, but there was just this glimmer of hope that we were latching on to. I mean, when we had all the scans we were given the all-clear! Perhaps that could happen again!?

So what does this all mean? Well, Trisomy 18 is a limited life expectancy disorder. Our little Mikayla's days with us are numbered. 60% of babies with T18 don't live beyond 21 days. Only 10% make it to their first birthday or marginally beyond. The statistics are not good. Our blessing is that Mikayla's defects are not huge, but the downside to that is that we really don't know what will take her life- really, we don't know what to expect. Each day with her will be a blessing to count. And each day a day closer to the end which we are to expect.

It's heartbreaking. Our time with her is inevitably to say goodbye. We will do everything we can to treat her like a normal baby. We need to for the boys. Luke and Josh need stability, and so far, we've not been so good at giving that to the boys. And we also cannot live holding our breath. Mikayla also needs us to love her like we would a normal baby.

Her progress will be slower than that of a normal baby. We're really not that sure what the extent of her "damage" is. It seems to simply be a waiting game. I am not sure how I will survive this.

The good news is that we will bringing her home tomorrow. Yay! It's gonna be hard work, but we will love her while she is with us- and try and have some kind of normalcy in this family. Will be glad to not have to continually be driving to and from the hospital.

Wednesday, May 12, 2010

Day 5

Mikayla is doing so well. She is taking feeds up to 40ml now out the bottle! I am so very proud of her. She has had a bit of a gammy eye- nothing serious... little babies often have their tear ducts getting a little gumped up... so they just gave her an antibiotic, and by the afternoon it was already looking better.

Still no tubes or pipes or anything, and in fact, they don't even have her attached to any monitors at all. She is only on an apnea mat, although she hasn't really had any apneas since the first lot on Sunday night.

I, on the other hand am not doing so well. I am on these awful pills to stop my breast milk, the side effects of which include a drop in blood pressure, nausea, dizziness etc. I had most of the side effects all in one morning- and it was promptly decided after having a brief visit with Miks this morning that I should go home and rest it out.

While I had a snooze at home, Russ went back to the hospital to spend some more time with Miks, and Dyl & Mark joined Russ to anoint Miks with oil, and pray over her- which I am told was quite a mammoth session :)

We went back this afternoon to the hospital to feed Miks, when I also had my C-section dressing changed, and all my vitals checked. Really, it's self inflicted on my part- I don't take any of my meds- so when I am in pain, I really have no-one to blame but myself. And boy was I in pain today. When I was changing Miks, she decided to let it all come out... really, she made me look very bad... there was poo everywhere!! :)

I spent some time on the internet today researching Trisomy 18. And, while it it still sad beyond words, I realise that others have coped before me- so we will get through this. I don't know how, but we will.

We are hoping that the genetic probe results will come back tomorrow afternoon. And then, more than anything, we just want to bring Mikayla home where she belongs. There will be decisions we will have to make, and things we need to know once we know the outcome of the results- but we'll address these as and when they happen. But the paed's desire is to send her home with us- she just wants to be sure that they know what is wrong with Miks before she comes home with us, so that we have the finer details of "what to do" etc.

The thing I have learnt the most over the last couple of days, is just what an amazing man I married. Russ has been an absolute pillar of strength. While I have crumbled at the seams, he has kept his feet on solid ground, always hoping, and always caring and always loving. I wonder how it is that I got to be so lucky that I would have a man like this in my life.... and I know, without a doubt, that we'll carry each other through this not matter what tomorrow holds. Mikayla is a lucky girl to have such an amazing father- and to watch him with her, brings me so much joy, because I know that his desire is to protect her, and keep her, and love her- the qualities of a great father, especially for a little girl..... but it is a bittersweet happiness.... because I long for him to experience the lifelong, very special bond of a father and daughter. He so deserves it.... and it was always my desire to give him that!

But I am sure this must be taking a toll on him too. And yet he keeps pushing forward. I really did land myself a gem when I married Russell.... but God obviously knew I needed someone like Russ- because I know I am able to cling to him through this difficult time.

And Mikayla? She is still fighting! And we're rooting for her!! Our precious baby girl.

Tuesday, May 11, 2010

Day 4

Mikayla has all the pipes out! No feeding pipes! No oxygen pipes! Nothing!! Such a very clever clever girl!!
We went in about 8h30 this morning, and spent the morning in NICU with Mikayla. We fed her her bottle. Finished the whole thing- really slurked it down! She is such a calm little baby.... but I have to confess that I love hearing her cry. It somehow makes her more normal. The paed has said that she is happy that we simply feed Miks formula, as it's important I keep my strength up. I sometimes wonder why. I mean, whats the point.... ? I feel like just quitting most of all. It's all too exhausting!
They did a scan of Miks' spine today. The paed was worried that one of her vertebra was fused. But it looks fine, apparently. They were also concerned that she was perhaps jaundice- but her levels were fine when tested.... clever little girl!!
They have moved her into a crib, instead of under the lights.... and she even has her first little outfit on. It is completely huge on her.... but it's the first outfit I ever bought for her- it says "Sweet Little Girl" on the front... which is exactly what she is.
I look at her: she has the most beautiful little sweet face. Tiny perfect nose, with rosy little lips. She is like a little pixie... all perfect. And yet... it's there... the reality that she is not quite normal. That she isn't exactly like other newborns.
Everyone keeps telling me that there is a plan for her. That God has a purpose in giving her to us. That she was pre-destined. And while I appreciate the kind words, I also find it terribly cruel that she would be given only half a chance. That she would have to be the baby that would have to fight for everything. Why Mikayla? What did SHE deserve to be the child to fight this? And fight, she does! I love her so very very much. And I just cannot understand why this happened to her. Why this happened to us. I keep thinking that we've put the wrong dvd in the slot. I keep wanting to hit the stop button. The eject button, and put in the right dvd. The dvd of my life. The dvd that plays with the little girl with pigtails running in my garden. the perfect baby girl that her brothers will dote over. The teenager whos brothers will make sure no boy ever hurts her. The little girl who will throw her arms around her daddy's neck and tell him how much she loves him- right up until the day he walks her down the aisle on her wedding day.
Will Mikayla even experience one of those realities???
There are, of course, so many unknown variables at this stage. The first of which is whether or not she does actually have Trisomy 18. The abnormalities point in that direction, but we will only know once the genetic probe comes back... hopefully on Thursday. The waiting game is killing me. I like to know the facts. I like to know details of whats going to happen and when. This time we have with Mikayla is not like that though. It's a "one moment at a time" game. And its frustrating.
How am I feeling?
Still very very raw.
I can literally, PHYSICALLY feel my heart breaking... 10.... 20 times a day. I feel like a failure. I have failed Mikayla. I have failed Russell. I have failed Luke. I have failed Josh. I HAVE FAILED MIKAYLA!! Was it my selfishness that made her this way? I so desired a baby girl.... I have longed for her for all my life. Is this so that I learn my lesson to not WANT so much??
And the boys.... I am a wreck. I am not functioning well. They need a strong stable mother.... and I am not giving them that. The boys deserve more than that!
I keep thinking... no... hoping.... that I will wake up, and this will all be a dream. That she'll be fine. Just like we had hoped.
It's not right. This isn't RIGHT! I am feeling so helpless! I am her mother. I should have protected her.
I am so very very sorry, Miks. You deserve so much more. You are beautiful. I am madly in love with you. But you deserved a better chance that this! I am so very very very very very very sorry!

Monday, May 10, 2010

Day 3

Today was a hectic day. Mikayla was taken across to St Augustines Hospital to see the paedeatric cardiologist, due to heart apnea's that she has been having. Her paed was worried that she had heart defects.
We tagged along- although didn't get to travel in the ambulance!
It was a long, hard day. But the cardiologist has good news. He said that, although she had two defects- these were things that were present in the womb, and had simply not sorted themselves out yet. They may still do so, or may not, but either way, they are not life threatening, which is great news. Mikayla was so good.... she hardly moaned while she was scanned.... such a precious good little baby.
There is apparently alot of pressure on her lungs though. They do worry about this, as the high pressure on her lungs can put added pressure on her heart. But its something they just need to monitor over time.
I wonder how I feel about everything.
Frustrated that I cannot take away her suffering.
Very very Raw.
I keep wondering why? Why my little girl? My precious baby girl?
She is worth so much more.
I am tired. Very very tired. And sore. All the walking everywhere does nothing for my c-section healing. But I have to keep going.

Saturday, May 8, 2010

Day 1

Getting ready in anticipation of the arrival of our beautiful baby girl. At this stage, everything was still fine..... let me take you back a few months....
At 17 weeks, during a routine ultra sound, we picked up that the baby has CPC's on her brain. The gynae was concerned, as it was a soft marker for Trisomy 18. As a precautionary measure, she sent us to a fetal specialist for him to check for any other markers. It was a gruelling 4-5 week wait for that appointment. I cannot begin to tell you the anguish I felt. I researched Trisomy 18. Here are some of the characteristics of Trisomy 18 babies:
  • Heart defects:
    • VSD (Ventricular Septal Defect): a hole between the lower chambers
    • ASD (Atrial Septal Defect): a hole between the upper chambers
    • Coarctation of the aorta: a narrowing of the exit vessel from the heart
  • Kidney problems
  • Part of the intestinal tract is outside the stomach (omphalocele)
  • The esophagus doesn’t connect to the stomach (esophageal artesia)
  • Excess amniotic fluid (polyhydramnios)
  • Clenched hands
  • Pocket of fluid on the brain (choroid plexus cysts)
  • Rocker bottom feet
  • Delayed growth
  • Small jaw (mycrognathia)
  • Small head (microcephaly)
  • Low-set ears
  • Strawberry-shaped head
  • Severe developmental delays
  • Umbilical or inguinal hernia
Saying I was scared is the understatement of the year!

In early January we went to the fetal specialist, and he did a very long, involved ultra sound. He looked at everything- her hands, her feet, her heart, her organs. The prognosis was good. He sent us away telling us that he felt no need for an amniocentesis. The only other marker he found, was a small defect in the pipe between the urethra and the kidney (I think), which was curved slightly more than normal, but he felt that this didn't increase our risk for a Trisomy 18 baby, and was something he would simply look at again when she was around 6
weeks old- and if it hadn't repaired itself, it would mean a minor operation to fix it. We were thrilled!! And so we prepared ourselves to meet our perfect baby girl.

Her growth from then on went well, up until around 34 weeks, when she started slowing down in growth. But the gynae wasn't worried. She felt that our baby was simply a small baby, and that the fetal specialist had given us the all clear for a healthy baby.

And so, on Saturday morning, the 08th of May 2010, we checked into hospital to deliver our precious baby girl via C-section.
Saturday 08 May 2010

Meet Mikayla
Weighing 2.52 kgs
46.5 cm long
And beautiful

Right up until they pulled her out, I was still praying for my perfect baby girl. Silent prayers of hope. But the hush in the room when they pulled her out was pulpable. The stolen glances were not quick enough. The concern too obvious. I found out later that they took 3 minutes to get her to breath on her own. When they whisked her away, I sent Russ with, but no-one would tell me what was going on. They wheeled me to recovery, and still no-one would say what was going on. Then I was transferred to my room- and still nothing from anyone- just sad faces!

After 40 harrowing minutes, the paed and Russ came into my room. The look on their faces said it all. When the paed said that they suspected my beautiful baby girl had Trisomy 18... well, I cannot begin to tell you the pain that I felt. It was primal. It was strange aswell, because everyone kept referring to her as the baby, until I said that her name is Mikayla. She has a name. My daughter has a name. And so it was. Baby Mikayla van Rensburg had entered into our lives to forever change us.

Eventually in the evening, they wheeled me, in my bed, to see Mikayla and hold her. There was my precious little girl, with pipes and wires all over her. And she was BEAUTIFUL. I am so madly in love with her. Mikayla... you are perfect. Beautiful. Our little princess.

The rest of the day is a blur. Tossed between complete grief and utter despair, to absolute joy over my beautiful girl. The only emotion I have not felt today, is anger. I have no doubt it will come, but I just want to be able to love my little girl, as any mother would. I don't care that she is different. She is still my baby. And I love her.

"Dear precious Mikayla

I love the softnes of your skin. It's like velvet on my fingertips, and like heaven on my lips.

You have come into our lives, and I keep hoping, wishing, desperately praying that you would stay. That I'd get to hear you talk, laugh, cry.

You are my daughter! My daughter! My daughter! I love you so very much.

Please stay!

God... I don't know how to talk to You. I know we live in a fallen world. And you may not have caused this. I'm not sure if I am even angry that You didn't intervene and make Mikayla ok. I don't even think that I am angry at You at all - or angry at anyone for that matter.

I am just so terribly confused why you promised me a daughter... why take her away then? And I am hurt and sad. And desperate to take away Miks pain - her abnormalities, and make her whole here on earth.

And I am frustrated I don't have answers - that we're not really sure whats wrong.


Help me understand. Why.