Miles for Smiles

At the end of what felt like another loooong week, while lamenting my tiredness (like no other person has known the level of tired I feel...), we went to David Grier's farewell party before his run of India.  Man, if ever one needed a wake up call, this was one.  How quickly I have forgotten not only all we have been through this year already, but how much other people are facing on a daily basis in their struggle to deal with life with an unrepaired cleft lip and / or palate.  David showed a video of the operations done recently in Mozambique (187 repairs in one weekend!) and all I could do was sob!  While I hope that Emily's recollection of her op will only be a picture we show her, I cannot imagine what those children (and adults!) go through every day.  The gift that Miles for Smiles and Operation Smile gives them is immeasureable.  Although, when you see how the joy radiates out of them once their clefts have been repaired, you know, that to them, it is very measureable and very real.

So, on that note, I was once again, brought back to reality, and to the realisation,  that so many people take on so much to make these wonderful changes in other people's lives without ever complaining or asking for thanks.  I need to suck it up, appreciated the miracle that is my amazing daughter, and concentrate on the joy! And, maybe, take some more vitamin B...

Progress

Hooray! After two weeks on DuoCal, Emily Bean has picked up 200g and is enjoying eating again.  Her darling Aunty Keira, has cooked her some special food, that she absolutely loves, and has ignited a new hunger in her.  Very strange to have to stop feeding Emily because she tries to eat too much (and this only leads to awesome throwing up...).

I chatted with a mom this week who is expecting a cleft baby.  It was surreal to think back on all we have been through in the last seven months.  It often makes it feel like there wasn't a time in our marriage where we didn't have Emily.  Or, at least, that time feels like decades ago. And then, on the other hand, I can't believe how fast Emily's seven months have flown by.  It is so nice to settle into a bit of a routine with her now.  The peace of mind that comes with knowing that we are on the right track with her feeding is liberating!  And, for the first time, Emily slept through last night!  We put her in her cot at 9pm, and she slept right through until 4am.  It's like she's rewarding us!

She is also a lot more alert now, smiling and playing more often.  She laughs and laughs!  I have these pictures saved as my screen saver... so needless to say, I am often smiling like an idiot at my computer screen...

Yin and Yang

Having a child born with a defect (using this description for Emily feels wrong in every way) has split most of my experiences in two.  Light and Dark.  The joy of bringing this wonderful child into the world, the anxiety of the hardships ahead for her.  The struggle to feed, the astonishment of the speed with which she learns and adapts.  The excited anticipation to see her repaired lip, the anguish over the pain she was in after the op.  The indescribable elation of her first post stitch removal smile, the knowledge that another op lies ahead.

I am a very emotionally charged person, and so I realise that this has greatly affected how Emily's life has impacted on mine. I don't want to scare anyone who has found out that they are having a cleft baby, on the contrary, Emily has been such a blessing to me.  She has taught me so much in the very short time she has been with us, and, I am sure, will continue to do so.  I am infinitely aware of the strength and depth of character that these little angels are born with.  One tends to associate thought and understanding with speech, and it is hard to fathom that someone who has not yet learnt to speak can think and understand, but, let me tell you, Emily sometimes understands more than I do.  She can give me this look that says: 'See, I told you'.  It is too precious.

There is also a wide network of help available with families who have children with cleft palates.  I was not aware of this until recently.  But I also like to be able to work out solutions so probably didn't look as hard as I could've to find them.  Should anyone out there need this support, it is available through either the Red Cross Children's Hospital Speech Therapy Department or The Groote Schuur Hospital Speech Therapy Department.

The reason I have come across this resource now is that Emily has been struggling to pick up sufficient weight.  We are now dealing with a wonderful Dietician (Katherine Megauw), who is helping us find a solution.

We also discovered in the last month that a cleft can often come hand in hand with other head growth development problems.  Our docs gave us a bit of a scare and sent us for a CT scan because they were concerned with the size and shape of Emily's head.  I am happy to report that all is perfectly normal, here is a pic of the Beanie's (substantial) noggen:


You can see how wide her cleft is.

 This pic also shows how wide her fontanelle is.  This is another 'side affect' of the cleft.  It has closed dramatically from when she was born, and has also moved up on her head, it was much lower.  If you look carefully, you can also see all her toofes!

I wonder sometimes if Emily is going to shout at me when she is older for putting these pics onto the interweb... oh well, too late now...

Here are some more pics:

Going for a weigh in this week, so hold thumbs for a heavy baby!

Milestones

While Emily Bean is cruising through her developmental milestones (need I say it? That's right, ADVANCED BABY), I seem to be stumbling over mine.  Juggling the practical difficulties that come with raising a cleft baby (who is teething...) with work is proving a great challenge.  And not least because I will ALWAYS be my own worst critic.  I need to learn that 'perfection' and 'giving my all' needs to balance against remaining sane! Learning that I don't have to do everything myself!  I got some good advice from a wonderful friend, who said to take it easy on myself - one of those things that is easier said than done. And on the other side is the emotional rollercoaster that goes with letting someone else care for your child, however loving, doting and amazing they may be.  I simply find myself running around, trying to do all, but feeling like I am achieving very little.  It is quite overwhelming.  I kind of feel like I am neither good at being a mother nor good at my job at the moment.  I also don't want to sound like a whining ninny.  I realise that I am not a bad mother, but it doesn't stop that little voice telling me I am every now and then. But, I will find my rhythm again, it's just that patience has never been one of my strong points.

Okay, enough about me.  Emily is growing so quickly.  She is more and more beautiful by the day! She is also playing games now and loves to laugh.  Just when you think you can't possibly love anyone more, she looks at you a certain way and flashes you the most incredible smile, that literally stops all the craziness, centres you again and makes you realise that there is nothing that compares to the unconditional love between a parent and a child.

And, yes, you did read correctly, she is teething.  Yet another milestone that the cleft throws an interesting spin on.  It, unfortunately, limits the 'muti' we can use, as the powders that everyone swears by end up going up her nose and causing her untold discomfort.  She also (like her mother) does not like the taste of liquorice, so Teejel also doesn't work (the face she pulled when we gave it to her it was priceless, the crying that followed, not so much).  For now, Pansoral and Panado seem to be all we can do, but it works, so who's complaining?

We are also feeding her Purity style organic baby food with her formula.  She seems to take to new tastes very well (especially when they are flavour like 'banana and peach pudding'!).  Her weight is also climbing nicely, and I am proud to annouce that she is starting to feel heavy when I have to rock her to sleep in my arms (crazy, I know, but to see her thriving like this can only bring me joy!).

Here are some pictures that I took over the last three weeks, enjoy!

Maternity leave in its glory

I can't believe that this is my final week of maternity leave. To say that the last four months have been life changing is probably the biggest understatement in the world, ever!  Just think, on Sunday, the 'Carte Blanche' theme tune will evoke that school dread in me again... I don't know how I am going to cope at work and get up at all hours to feed the Beanie, but I am not the first working mom, so it must be possible (please, let it be possible without too much heartache!).  Let me not be my cynical self and expect the worst, I still have Team Bean and in that regard are a heck of a lot luckier than most other working moms! And while I fear next week, Jeannie is counting the sleeps because she and my Ma will be looking after Beanie while I am at work. Like I said, REALLY LUCKY!

Beanie is doing well, picking up weight like a champion!  Still so petite and adorable, but those cheekies are getting rounder (sometimes with food that she won't swallow and then spits out when I'm not looking...).  Her ear is still leaking, but she is not running a fever, so it must just be gunk that wants to come out and from that point of view, good that it is coming out.

My hernia op seems to have been a success.  I am not in nearly the same amount of pain, just post op pain, and for that I have awesome pain killers.  They do make me quite drowsy, so at the moment, all I do is sleep, feed Beanie, take pain killers, do washing, feed Beanie, sleep... and so it goes.  This is also why it has taken me so long to update the blog... you knew there had to be an excuse in there somewhere!

My pain is almost gone now, so I am only taking pain killers once a day, so my energy levels are picking up.  I woke up with a start early this morning with the thought that this is my last week, so now I am trying not to miss a single moment with Emily (can one cuddle 24 hours a day?). Man, oh man, I am going to miss her (sob...).

Team Bean's theory on my Dejavu

Okay, their theory goes something like this: My brain is muddy (I have used this word, they used another word for brown stuff... and my brain was full of it) with tiredness, so it takes a while to process what is happening.  When my brain surfaces from this 'muddiness', it catches up with what has happened, and then thinks it has happened already... because it has, but only once, and not twice like I seem to 'think'.
Still want to win the lotto, though.

All's well in the land of the Bean

Well, almost all is well... Emily's ear is still infected and we need to take her to have it 'suctioned' out again - poor child!  Her check up with the Paedeatrician went well on Friday.  He is, of course, amazed at her progress.  She should be at about the two month mark in developmental milestones,  but at the moment, she is between 3 and 4 months.  So, almost at her actual age.  Advanced Baby (in case anyone missed that I feel that my child is far above average).
His only concern was the slow down in her weight gain, and he has put her on Polycose which is a calorie booster.  Let me tell you, the run around to find someone who had a tin of this powder in stock was a nightmare.  But on the plus side, I thought it was going to cost about R1000 for the tin, and it only cost R93! Grant still phoned me once he had paid to make sure he had the right stuff because it was too cheap - too funny (just goes to show how this NEVER happens with baby products).
Her appetite is so much better now, which is a great relief.  The only downside is now when she wakes up and wants to eat, her time from awake to fury because we have taken too long to prepare her food has gone from about 1 minute to 10 seconds - makes for very interesting 3am feeds.  I am surprised the neighbours haven't phoned the cops yet, because it must sound like we are murdering the poor child and all we are actually doing (or not doing, as she sees it) is preparing her food (slowly...).
I am going in for my hernia repair tomorrow, so will try and squeeze in as much Bean time as possible today, because it will probably be a few days before I can hold my most precious Angel again (tear...).  I have to stay in hospital overnight so that (and I quote from the doctor) 'they can give me the good stuff for the pain' - Grant is soooo jealous!  And speaking of Grant, he and my mom will be on solo Beanie duty on Wednesday night... it's going to be... interesting... maybe I should send the neighbours a 'warning'?

Say cheese!

I have added new photographs of my supermodel to her gallery.  Enjoy!

Dejavu

I am going crazy!  I have this insane theory (which, right now, sounds perfectly sane, to give you an indication of my mindset...), that because I am so tired, my subconscious brain is 'interfering' with my conscious brain.  So, just about every day, I have the most ridiculous sessions of dejavu.  Convinced that I am actually becoming psychic it is so bad.  I can only reason this away by saying that I must be running through so many scenarios in my dreams of possible outcomes to the activities of the following day that one of those scenarios inevitably plays out in reality.  The only thing I can't explain is the level of detail (it is quite freaky), but then I have always been a stickler for details (some might say OCD, but, hey, a job worth doing...).  Not only is this driving me crazy, the other members of Team Bean are about to ban me from the clubhouse because I am driving them round the bend too - the phrase dejavu is now a swear word around here!

Now, if only I could put this to some good use, and win the Lotto - who will be swearing then!?

The Ostrich

No, this is not a story about sticking my head in the sand until all the badness has past, it is, in fact, quite the opposite.  While attending our first Babygym class (http://www.babygym.co.za/), we were told the story of a new ostrich farmer.  He felt sorry for the unhatched baby ostriches who were trying to get out of their shells, so he 'helped' them by cracking each egg so that when the chick was ready, it could break out of the egg a lot easier.  Unfortunately, to his horror, when the chicks did hatch, they all had floppy necks and couldn't hold their own heads.  Distraught, he contacted an ostrich farmer with years of experience to help him solve this mystery.  He told the other farmer how he had cracked the eggs to help the chicks as he didn't want them to suffer unnessecarliy.  The older, more experienced, farmer explained to him that it is in tapping the eggs from the inside until they can break free, that builds their neck muscles, allowing them to hold their own heads when they hatch.  The moral of the story, although nature/the universe/God can seem to put undue (and overwhelming) stress on our babies, they need to learn persist, and in so doing will be strong enough to survive in the (sometimes bad and scary) outside world.

I thought this story was a bit more meaningful than 'what doesn't kill you, only makes you stronger' because I really don't want to think in those terms when it comes to Emily.  While I struggle to stop feeling sorry for myself because of my lack of sleep and energy, I have to remind myself that my daughter is not 'being difficult'.  That, when a baby of her age cries and won't let you put them down, it is because they need you to comfort and soothe them.  Being needed on such a fundamental level is breath taking.  And when I hold her and she does (eventually) stop crying, the peace and tranquility with which she sleeps is something I only can only hope she will know throughout her life.

Health update wise, her lip continues to heal beautifully!  Her right ear is still infected and she is on another round of both ear drops and antibiotics, so lets hope it can finally clear it up.

She went for her weigh in this week, and she is now 4,55kg and 56,4cm tall.  I am very grateful for my petite baby, as I have aggrevated the hernia I picked up during pregnancy and can hardly carry her at this small weight.  But, this will be sorted out, and then I won't put her down until she needs to go to school!  Likely!  I can't wait to see her sit and crawl and eventually walk and run.  I never thought I would feel this way as I always loved babies and not toddlers, but the thought of my daughter reaching her developmental milestones and experiences excites me no end, and I can't wait to go through them with her.

And like that, it is over... for now...

After what has been, without doubt, the hardest week so far, Emily's stitches came out without incident. Why should that surprise me? Emily is, after all, amazing!

Happy, smileys!

We had to be at the hospital at 6am! But I learnt a new trick - Electrolyte replacement sachets!  Beanie had a runny tummy on Tuesday, so I bought some Cera Lyte 50 sachets at the recommendation of the pharmacist.  I made 200ml of mixture, and used this to make her formula.   It is berry flavoured, so she looovvved it!  In the wee hours of Thursday morning, when giving her the last feed she was allowed before anaesthetic, I gave her a feed mixed like this, and she lasted a lot better on her enforced 'hunger strike'.  Let me add, at this point, that I usually mix Emily's formula with Rooibos tea, instead of water.  So I just brew up some Rooibos, and then mix her formula with that.  She loves it!  And it made such a difference, when we were struggling with her stomach when we put her on formula (and before anyone judges, we had to, because she was lactose intolerant!).

My mom has also asked me to please add that the medicine dummy feeder does need two people to feed.  One to hold the dummy in place, and the other to fill the syringe and feed the milk in - in case anyone was trying this alone, and feeling less capable than us.  Please, remember, that at any given time, Beanie has two carers from Team Bean looking after her - she is a very lucky little Beanie (and, I am a very lucky Mommy, to be so well supported!).

Back to Thursday's procedure.  Emily was only sedated with anaesthetic so that she could lie completely still when they removed her stitches.  It was so quick, that I left the theatre after holding her so that they could administer the gas, got to the waiting room, switched my laptop on to post on her blog, and the plastic surgeon came out and said he was done! Amazing!  Just about sprinted back to the recovery area so that I could see the results, and I could hear her coming because she was, um, 'asking' quite loudly for her food...  She drank from her medicine dummy, and then gave us the breath taking smile that I posted above. 

Her ENT came and checked on her grommits, and her right ear is a bit infected still, so we have to keep on with the antibiotic drops until it clears.  Not the most pleasant thing I have ever done, because the sticky icky slime that is coming out of her ear makes my spit go thick (my mom's version of 'I threw up in my mouth').  But it is already a lot better, so, hopefully, it will be all clear soon.

Feeding, post surgery last week was entertaining.  If there has been any one thing that allows Emily to express herself, it has been her feeding!  She has now decided that she no longer wants to drink from her Pigeon cleft feeder, mind you.  Her way of telling us this, is to gag when we try to feed her with it (smiling and shaking my head as I type this!).  So, in a frantic, dazed state, I shot out of the house on Thursday to hunt down a dummy style teat - a lot easier said than done!  I found Mam teats, that are fitting her Nuby silicone bottle so that I can still 'assist' the feed by sqeezing the soft bottle.  But, this also, only works when she is in the mood... We mostly start a feed with one device and end it on another - my child likes to keep us guessing. 

Never a dull moment - and why would I want it any other way?!

Here is a montage of pics to date of my darling Angel, Emily Bean Fairbanks (even Rocky had a montage...)

  

  

  

I, truly, have nothing but love, pride and admiration for my darling, strong, wonderful daughter, who brings us endless smiles and love.