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!