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 :)

Not forgotten

It is embarrassing to look at how long I have neglected to post on this blog.  I haven't forgotten it - far from it.  It has been on my mind as I have a lot that I want to write about.  But presently I find time slips away very quickly.

I have been busy with these 3 little guys..... :)

I am getting photos together so you can catch up with Ultan's journey.  And it is a journey that is going so fast.  He is 5 months now.........

Sharing so you can keep in mind

This post is something I debated about sharing and decided at the time against but as time has past I have changed my mind in order to stop it happening to another baby who has just gone through a lip repair. 

To this day I am still convinced that we chose the right doctor and through him we trusted that he chose the right hospital and I honestly believe he did.  Through my miscarriages in Hong Kong I have experience in a lot of the hospitals on Hong Kong Island but I have to say checking into the Adventist Hospital was a first for me.  Living in Hong Kong I had heard rumours about the hospital having a good cardiology dept and a good ER dept for kids but further than that I really had no idea (except that there would be no caffeine which was fixed by some wonderful friends!).  

Ultan's nurses were, on the whole, incredible.  Through Ultan's stay he had 4 nurses that stood out who cared for him. The nurse who mainly took care of Ultan happened to be Japenese who didn't speak Chinese and had limited English.  I wished so much to have all of my family near by because my Brother in Law, who has craved a profession with Japanese, and his gorgeous Japenese wife would have cemented the bond between our nurse and us with their Japanese fluency.  Nurse 1 (as I shall call her) was born to care with her natural tendency to care for babies.  She completely respected our Son and we love her for that.  You know you are in good hands when your nurse walks through the door and you want to see her.  

The second nurse was by far the most confident with dealing with clefts.  She has the most experience with cleft care and with her confidence I would imagine would make a good teacher.  She made me feel completely at ease with her care for Ultan and I trusted her in updating the doctors as she had experience with what she was talking about.  Nurse 3 was lovely, she was an extremely nice person but I had to stop her temptation of cleaning the wound when unnecessary i.e.  the nostril floor is especially tender and as there are no stitches in that area. Blood clotting is relied upon as part of the healing process.  Watching this process it may be tempting to clean the dried blood away but from what I have read, the nostril floor is best left a lone in the days following surgery.  Turned out nurse 3 was new to Adventist and I would love to know if she had worked in Queen Mary because she reminded me of the nurse who wanted to feed Ultan with a syringe!!  

Nurse 4, was on her night shift when Ultan came under her care.  During Ultan's stay I didn't leave his side and at night I would sleep on a sofa bed by his cot.  I would hear nurses come in to do their job checking Ultan and by the third night I didn't get out of bed everytime a nurse came in. Unfortunately I choose the wrong night to stop because when nurse 4 came in to do her check at around 4 am, she, probably without knowing, or realizing, she pulled up the bed blankets around Ultan's chin.  Well, for a baby who has had a 3 hour surgery on his face and has his arms in arm restraints to stop him touching his healing wound, having a wool blanket available for him to scratch his itchy wound = time of his life.  Ultan had a field day ripping his head from side to side probably trying to relieve the itchness of the healing wound that by the time I found him the bedding was filled with Ultan's fresh blood and his face was covered in blood - to the degree that I did not know if his wound was damaged.  Just hours earlier I had been told about two incidents in Hong Kong where the lip had split post surgery and believe me, I was mentally incapable of having to go through this surgery with my son again.

The nurse obviously was shocked that her innocent and to be honest loving action of covering a baby and make him more cosy would end in such a bloody result.  Immediately she changed the sheets and as much as she wanted to clean up Ultan, I think she knew by my eyes that it would be best if she left the room and not to return - which she did.  Thankfully experienced Nurse 2 arrived a few hours later and I trusted her competence to clean Ultan safely (she didn't touch the wound, just cleaned the blood around the rest of the face) before Dr Lam arrived.  Dr Lam did a complete clean and to my extreme relief confirmed all was OK and no damage was done.  I also have to mention that the ward manager came in to apologise for what had happen as soon as she arrived to work.  She was devastated by what had happened and was sincerely apologetic.

From reading this you can tell that there was no way Nurse 4 would have done this on purpose.  It is a natural reaction to pull the blankets up on someone to make them more comfortable but in the case of patient recovering for a lip repair, it happens to be detrimental to their recovery. The wound must be protected from not only the baby's wee fingers but also from all other devices which will help baby scratch the hell out of his/her wound.  This is why I have decided to share now as Mom/Dad/Carer who are taking care of baby after surgery will not allow a loving nurse do this to their lip repair baby.  And for the carer, don't be surprised how instinct kicks in.  

Trust me, trust your instincts!

A relieved Mommy taken a photo after Dr Lam confirms the wound is OK!

PS  Ultan is a clever wee fella and he learned that having a nurse come near him may end up with a needle stuck in him so he would react like any baby know's how and would scream if the nurses crossed the bottom of the cot.  However, to my amazement, Dr Lam Lai Kun did a complete clean, which included using instruments

and Ultan had nothing but smiles.  This is obviously a good sign - one does wish for their plastic surgeon to have a gentle touch!