Blending in at the Park!

6 months of Ultan x

Today is a very special day which the boys have been planning for months now - Ultan turned 6 months today :).  We had cake, pizza and Daddy brought home sushi (not knowing Mommy had ordered pizza!).  Seán and Kai had a playlist of kids music for Ultan and Happy Birthday was sung while Ultan sat like a Lord in his bumbo laughing at his families shenanigans!

It also marks a one year anniversary of me being taken off bedrest after a 2 month stint of not being allowed move from the bed, not knowing from one scan to the next if our baby was going to make it.  He did and we will celebrate that forever.

To our wee 6 month old Celtic Dragon.  His fire within ignites all who meets him.

Cleft Lip and Palate Awareness Week

This week it is Cleft Lip and Palate awareness week in the UK which is arranged by CLAPA. When we were first diagnosed, the information that we got from the CLAPA website was like getting a big hug from all the fellow members sharing their stories, so you can imagine how proud I am that Ultan's journey  is being shared to fellow CLAPA members.  Everyday, three babies are born with a cleft in the UK. If Ultan's journey can give one of these familes a feeling of warmth and hope by seeing, his happy character, his happy smile and how proud we are of him, then this blog will have served its purpose.






Our relationship with CLAPA started when we were diagnosed at our 20 week scan and found many closed doors here in Hong Kong.  We turned to the UK for support and CLAPA was one of the first sites that I visited.  We also turned to professionals for guidance and someone who has played a huge part in our journey is Mr Alex Cash who from 7000 miles away was the first medic to diagnose Ultan after he was born (I was never any good at geography and I am making a complete guess that London is 7000 miles away from Hong Kong!)

Alex's area of specialist clinical interest includes management of cleft lip and palate.   Having Alex's professional opinion was not only informative to us but also relaxing as he told us what we should be doing next.  Leaving aside the medical support he gave us, Alex spent an equal amount of time reminding us to enjoy our baby, reminding us to behave the same way we did when our other boys arrived, reminding us that our baby will grow up very quickly and we only have one chance to enjoy him as a baby.  He told us, get the feeding right and the medical stuff will happen.  For us it is rare to find a Consultant to be such a realist with information and also humanist to the case, Alex holds both of these characteristics, educating both Mark and I with the medical aspect of cleft while reminding us that parenting Ultan is the most important thing.  He will always be the doctor who was the calm after our storm of diagnoses - we would highly recommend Alex Cash.

By far the worst part of being diagnosed with Ultan's cleft was relying on doctors' reading of scans to give me information.  My biggest fear during my pregnancy was not being able to feed Ultan after he was born.  A fear that would keep me awake at night.  On meeting Dr Valerie Pereira (who was awarded a PhD, Impact of maxillary osteotomy on speech in Cleft Lip and Palate by UCL Institute of Child Health, London) she was a calming influence for me and put me in touch with her colleague Ms Alex Forsyth who is the feeding specialist with the Great Ormond Street Cleft Clinic.  Alex really calmed me and directed me in what bottles are used in Great Ormond Street.  I will share Alex's information in another post but I will always be grateful to her go taking the time to reassure the pregnant woman in Asia!

When I write here, I am writing to the parents who are in the similar boat as the 20 week pregnant me.  A parent who wanted the best for her baby but was going around in circles trying to find the best info.  CLAPA, British professionals mentioned above and Joanna Chu here in Hong Kong were a big part in helping us through the pregnancy, because for me the pregnancy was the worst part.  In our journey, once we got Ultan safely in our arms all was OK.  He drank his first bottle without difficulty and Alex cash was right - get the feeding right and everything else will follow :)

Photos from April - introducing my new babysitter - I can share him with you ;)

Meet my new babysitter -

Mr Jamie Oliver.....!

Ultan loves watching Jamie and before you judge me for putting my baby in front of the TV - I have dreams of my youngest son cooking multiple course meals in 30 minutes...

He might even cook with an Essex accent - aww right!!!

Photos from March

As with any plastic surgery, it is a sit and wait game to see how the finished work will turn out.  During the healing process, the muscles have to knit and when they do that they tightened which you can see pulls up the lip bow on Ultan's cleft side.  Once the muscles have relaxed the lip bow should relax back down.  This could take 12 - 24 months.  So, Ultan's face should/could change continuously over the next year.  It will be interesting to do a comparison on the first anniversary.

February Photos - We are Home

It was so good to be home.  

I thought I would be in mourning for Ultan's first smile but surprisingly I didn't even reach for a picture for many weeks.  I definitely mourned prior to surgery and even for those first hours after surgery.  But, with his first smile or second smile, Ultan is Ultan and he shines through with or without a cleft.

Something I thought might happen but wasn't prepared for was the regressing back to a newborn schedule.  Ultan was born on the 25th percentile and dropped to the 10th percentile after surgery so he worked hard to regain his weight which meant he was getting up every few hours during the night.  And as he is breastfed it meant that I had to pump more.  My motto kept ringing in my head - it is only a phase....  

I tell you now, you can conquer the world on a good nights sleep!

Last day of stitches.  8 days post lip repair

First day of no external stitches. 9 days post lip repair.

  Embarrassing confession:

Ultan's shiny face is a result of my fear of going near the wound hence I didn't clean his face from when we left hospital until we returned to get the external stiches out.  Once I did wash his face, it was rather alarming the amount of my make up that was on his face (obviously hugging the wee fella a little too close to the wound!)

Do know that you can wash your child face after lip repair.  I was just too scared!

I have to say, with the external stitches gone, Ultan did not look nearly as delicate .  He was slowly but surely returning to his normal self.

Shiny face gone.  Here is the little man's big smile :)

I didn't think about the nose repair before surgery and Ultan's nose was a complete surprise to me.  I think Dr Lam Lai Kun did incredible job.

January Photos. In the hospital

Ultan at 8 weeks old in hospital getting his lip repair as well as the frontal part of his palate prepared for his palate surgery later this year.

Even the extra small hospital gown was too big for our wee 8 week old Ultan

Morning after surgery.  Mirror was brought as an entertainment tool for the cot.

Kai seeing Ultan's second smile for the first time :)  Ultan's brother's were very relaxed about their brother's new smile and were more interested in given him a kiss and exploring the hospital room.

Ultan's new smile Day 2 post surgery.  I didn't capture the first smile on camera as Dr Lam Lai Kun had the privilege of giving Ultan his second smile and receiving the first smile from his second smile - with me?!

Also, these are the AWFUL arm restraints that Ultan had to wear for almost 3 weeks.  He tolerated them really well but it was obvious he didn't like them.

 4th day post surgery as we are just about to go home :)