Sneek Peek at 20 weeks!

Ultan fell asleep on my lap last week and I instantly recognized the pose.  If we were to be handed a copy of a picture of Ultan at our 20 week scan, this is what it would look like (the consultant in Queen Mary refused to give me a picture from Ultan's 20 scan (still haven't forgiven her!) and we never got to see it clearly enough again to get a picture)

Looking at the picture you can see that Ultan's right nostril is collapsed which gave us the knowledge that Ultan had a complete unilateral cleft lip.  For those who are reading and have been diagnosed, Ultan's cleft was 8mm wide which would be considered a moderate cleft.

If you have read the blog, you will be aware that Ultan did not really show his face much and we spent most of the scans following his 20 week scan looking at this!

Back safe and sound :)

Thank you, all of you, for your support, kind words, positive thoughts.  Ultan is back safely in our arms - handing him over for surgery was the making of even more grey hair!!! Bear with me while I keep his new smile for myself for a wee bit :)

Nervous .com!

Looking forward to having our Celtic Dragon back in our arms safely!

Emotional Goodbye!

I have just got off the phone from Dr LK Lam.  Surgery is a go for Monday morning 8am (my stomach just flipped typing that...).  Thankfully, it was changed from Tuesday afternoon to Monday morning.  I didn't fancy trying to pacify a starving baby for half the day but with a morning slot, Ultan can be brought straight from bed to theatre.

Of recent weeks, I have had a lovely schedule in the morning.  We are - I think a very typical family. In the morning our house is filled with Mark and I having to repeat ourselves a thousand times trying to get the kids ready to go to school (I hope other households are the same!).  But, once Sean and Kai are off to school, the peace within our home is immediate.  Left with Ultan, I treasure our mornings alone together.  It struck me just now that this morning was the last time I would chat with Ultan on our own with his first smile.  (Tears are streaming down my face as I write this and I have a PCCW guy beside me fixing my cable probably thinking I am a mad woman in a dressing gown crying to a computer screen!!)

I have wondered why I have been so attached to Ultan's first smile.

I think when you are first pregnant,  everything is so surreal.  I was lucky enough to go through Sean's pregnancy with an incredible bunch of Ladies I met in the NCT London.  When I think back, I was certainly naive as to what was to come.  I was so focused on the pregnancy, which buggy to buy, what development was going to happen in the pregnancy that week that I didn't really think about the reality of having a baby or if I did think I had no idea of the reality.  When Sean was born, he was in his Daddy's arms for 2 hours before I got to the recovery room and was able to hold him.  Even being able to see him for the 2 hours, nothing compared me for when he would be placed in my arms.  It was a moment when I can easily say that the power between mother and son felt like chains being wrapped around my heart and sealed with a padlock.  Sean was locked into my heart and I knew that this love was unchangeable forever.  I also now understood what it was like to be a parent and instantly felt sorry for any grief I may have caused my own Mom and Dad.  I wonder would the other NCT girls agree?!

So when I found out we were pregnant with Kai, knowing now what love was like between a Mother and child, my attachment to Kai was instant from the moment I knew he existed.  If anything I worried that I wouldn't love Kai as much as I loved Sean - could one have that much love?!   When I got to hold Kai, and knew again that he too was locked into my heart, I turned to Mark and I told him of my euphoria and how I could have 7 children to which he replied promptly "with who" :)

So needless to say, Ultan was in our hearts from the moment we knew he existed.  I was only 7 weeks pregnant when we saw him kick for the first time.  This kick would have Ultan's Father believe in his son's strength even when a medic tried to tell him differently.  Mark believing in Ultan at such an early stage will forever forge the strong bond between the two of them - a bond I now know my sons won't fully understand until they have children themselves (if they choose to!).

Mark and I fell in love with Ultan even before our 7 week scan.  To be honest, we have waited for him for so long, we had fallen in love with him before he even existed.  To be presented with the baby you have waited for years to meet, who you have loved for years, well,  we just love him and that includes his cleft lip.  We love his wide smile.

It is that simple, no science involved, we love his wide smile and therefore are finding it emotional to say goodbye to it.  When I was bringing Kai home from Kindergarten this week, he said he was sad about Ultan getting a new smile because he would miss his old smile to which I replied "won't we all?"


Photos of Ultan chatting with me.  Who wouldn't love hanging out with this wee man

8 weeks old today!

Ultan turned 8 weeks old today!  For the first 6 weeks I was Ultan's life, well I was until Daddy came home from work and I was promptly made redundant for the Daddy :)  Ultan's favourite past time was hanging with his parents, studying us, checking us out.  Now he is grown up that is changing and it became abundantly clear to me yesterday when I was pottering around the kitchen with Ultan in his bouncy chair beside me.

Initially he was excited to be a part of the goings on in the kitchen.  But, he got bored of me and looked straight into my eyes and started crying.  I knew exactly what he was asking.  His brothers had returned home from school and he could hear them playing in the living room.  Ultan has realised that he is a part of a family and adores hanging with his brothers.  Once I carried him in his chair to be amongst Sean and Kai he was a very happy baby.

Sean and Kai have been amazing from the moment they knew I was pregnant with Ultan.  They are so proud of Ultan, so protective, gentle, playful, attentive. Yesterday as I observed my 3 sons interact together, discuss with Ultan when he will be old enough to move into the 'boys' room with them, I couldn't help but think how lucky I am as a Mom to have such attentive, loving boys and how lucky Ultan is to have such fabulous older brothers.  I wanted to bottle the moment for when they are killing each other to remind them how much they love each other.  I wish for my children to always have the bond and care for each other as they did on this Thursday afternoon.

My 4 boys with Mr Bing.  Yummy Chinese Crepes (Jianbing).  Peking Duck and the Classic are our family favorites.

Stay positive

Whilst we have reported in earlier posts that I was a voice of calmness and optimism in all of the various processes that we have gone through and are about to go through, I think it is reasonable to say that this has been anything but calm and stress-free. Of course it is bound to be stressful!

Some of our doctors have reported that we are very calm, but I think that is mostly a fact of being third time parents. I have to admit to feeling very stressed with all of this journey, as it sometimes feels like a huge burden to do the best thing for your child; to choose the best surgeon and care you can for your child; but to also balance that with the anxious knowledge that, by undertaking the surgeries he will experience pain. I think all those anxious thoughts and feeling stressed are very natural. For many of them, we can hopefully rationalize them that we have very little control over their outcome, but on others, we have choices to make and concerted effort to be put in with his feeding schedule and overall health before he goes in for that first surgery.

I must say Eimhear has been amazing at this, even though as parents to a newborn again, a few years older this time, we have been - what do I mean, we are - pretty tired, all the time. I am lucky that she is such an amazing mother and dedicated to all our children in the way she is, and has taken on so much of this herself, both prior to birth and after. Eimhear fore-armed us with so much information and preparedness that the process has been manageable, but of course, it would never be stress-free. But we have tried our best to keep communicating with each other, with new snippets of information we get and information people shared with us, while trying not to let it be all-encompassing and the sole topic of conversation between us as a couple and between us and our friends.

An additional part of the puzzle is trying to have Ultan blend into our family as seamlessly as possible, so that no one member of the family suffers or is in anyway forgotten while he goes through his journey. Eimhear is still healing physically following the birth and we all have her sanity in mind as a mother to three boys! Seán is on his own journey in his first year at school and is a big brother again. While Kai is looking to transition this year from kindergarten to school and has to negotiate school interviews, as well as deal with the fact that he is no longer the baby of the family; he too is a big brother, but also still a little bother, meaning, of course he is a middle child. As a middle child myself, I can identify with his special place in the family tree!

Life goes on too, with school, homework, activities and fun, friendships and family time to be fitted in to all of our lives.

I think us also having dealt with so many miscarriages has given us some perspective on matters. Us having already had the knowledge of what Ultan will need to go through for a quite significant time has probably allowed us to gradually come to terms with it. So perhaps getting this diagnosis at 20 weeks is so much better, even in Hong Kong where pre-natal care and attention for clefts is nothing like what some other countries can provide, than the shock one would get if this only presented itself at birth. I imagine that would be quite difficult, as everything would be so raw, with a newborn, as well as somewhat rushed as you try and get as much information as possible before he heads for his first surgery. So perhaps so much of the stress for us has already passed. But those levels are bound to be elevated again as he heads to his surgery next week.

We certainly hope that this blog will help anyone who goes through a similar journey. There is so much you cannot actually control and my philosophy is that there is absolutely no point stressing over anything you cannot control.

And, please take courage from our journey - things are working out for us. Ultan is getting bigger and stronger daily. His doctors are happy with him, as of course, are we. Extremely so. His brothers have been great.

There is so much of what happens after birth which is just a phase (we keep telling ourselves that: “just a phase, just a phase…” like some tantric mantra, at the end of which we will awake from a long night’s sleep, fully refreshed and no longer knackered!) and it will, in time, pass. That is the same for every baby. The next phase will be post-cleft lip surgery. It is almost upon us and I know we will all rally together as a family and we will move on from that too.

Capturing the Smile :)

As we approach the last week of Ultan's first smile, we are petrified that we will not have taken enough photos to capture his wide smile.  So, I would imagine that we have been extremely annoying parents sticking a camera in Ultan's face at every opportunity!  However, our youngest Son as always has got his message across to us loud and clear!

Proud Father and Husband - Part 1

My own post (everything written so far since Ultan's birth has been penned by Eimhear, with minimal assistance from me) has been long overdue. I apologise for that to any Dads keen to follow the journey from a Dad's perspective. But mostly I apologise to Ultan and Eimhear for not fitting time into my schedule to write this overdue piece.

As I write this Ultan is almost 7 weeks old. I really cannot believe how fast that time has flown, yet it all seems so fresh, despite the sleep deprivation and so much water already under the bridge. So many of the stories from over the last 7 weeks have been reflected upon already, but I will try and add a bit of colour from my own perspective.

Exactly 7 weeks ago I sat in my office with this niggling feeling that I should be taking my boys to the party they were attending at the far end of the south side of Hong Kong. But my rationale side overruled my gut, as I thought that we have to trust the help to be sensible and I should really try and get on with my work, as I would be about to take three days of paternity leave (paternity leave is not given by law in Hong Kong, but some employers do give some gratuitous leave). That niggly feeling though proved to be well-founded as the help decided to ignore direct instructions and put the kids’ lives at risk by putting them in a taxi with other people for the trip, thus meaning there were not enough seat belts for everyone. When Eimhear phoned me to tell me what had happened I thought "here we go again", but my overriding thought was that she had to go, as if we cannot trust her, then she cannot be minding our children even for a minute. Not a pleasant experience and the sickening thought I had was having to ask for help from people. I hate asking for help, I want us to stand on our own two feet, but sometimes an incident like this really brings you back down to earth and brings out the best in all of us. Anyway, over the coming days we experienced extraordinary acts of kindness from friends and neighbours. The sort of stuff that would happen at home in Ireland when there is a birth or a death. That was a really positive outcome from all this that we really felt the warmth of some of our friends and neighbours and struck deeper bonds with many of them.

Anyway the moral of the story from the last paragraph - always trust your gut!

The day of the birth dawned early and after dropping the boys with a neighbour for breakfast and to be taken to school, we headed off to the hospital. Inevitably I was asked to leave while Eimhear got ready and spent some anxious moments waiting until I would be buzzed into the operating area. I got to dress up in scrubs and then eventually was let in to the operating theatre. There was Eimhear on the table and she was chatting away. She seemed to be really talkative and I wondered what funny drugs they had given her, but she was lucid and kept telling people how they would not be taking Ultan to the Intensive Care Unit.  She was so calm and in control, but also talking a lot - nothing unusual, but a slightly odd place to be doing it. However, I found out later it was all part of the plan, to ensure he was not unnecessarily taken from us and put in intensive care, when in reality he is a perfectly normal baby. All fairly quickly they set to work and then before long we could hear him and finally I could see him. It was hard to tell how big the cleft was, but I got some glimpses as they worked on him on the assessment table. They then brought him over and showed him to us and too quickly then took him away again, ostensibly to clean him up a bit and do some of the checks, and this seemed to take for ever, but eventually he came back and then I was allowed to go with him while they stitched Eimhear back together. This to me is a strange moment, because the woman I deeply love is lying on an operating table with her stomach pulled open, yet I am leaving the room, leaving her to it. "Sort yourself out there, love, I am off, see you later." But I suppose I did have another job and that was to acquaint myself with Ultan. They gave me a room and then encouraged some skin to skin contact. That was special, having ten or 15 minutes with him alone. A pediatrician came and checked him over, pretty cursorily I have to say and gave no advice whatsoever on the cleft. I asked her to send for the dental specialist who would be able to assess him. She seemed to have understood my request....

After a while they took Ultan from me to take him in to Eimhear. I was booted out and was able to start sending some messages to family, friends and colleagues. At exactly 1 pm (visiting time) I was reunited with Eimhear and got to see how she was. She seemed OK and had obviously cherished the time with Ultan. I guess as a Dad this is where you just have to click in and start taking some control, as your wife is just after surgery and is going to be in pain for many days and weeks to come. She will be weak and sleep deprived, especially in a public hospital ward. We set about getting ready to feed Ultan and remarkably and thankfully that was a success and easier that we expected. I felt pride in giving Ultan his first feed. I got Eimhear all set up to start pumping to, no mean feat in an area about one to two feet wide to the side of the bed before you starting encroaching on the neighbour's bed, where a family of about 20 were having lunch, a pretty stinky affair to be honest. Presumably the food being consumed next door was the start of the mother next door's recuperation process.... I think I got a cereal bar. Promptly at 1pm I was booted out although I was able to stay a while to help Eimhear get arranged for the coming hours. The next 48 hours passed like this - visits at night and lunch time where I would cart stuff in and out and feed Ultan, change his nappy and wash him etc (although the no baths rule was completely ridiculous!)..

We were so happy to get out of there and get home with my newly enlarged little family and thus begin the next chapter of our lives as a family of 5.....

I guess I have not written of my thoughts and reaction... I think the cleft was much bigger than I expected, but that did not really phase me at all. I had done some of the research or shared in a lot of what Eimhear had found out and knew kind of what to expect. I guess a part of me was hoping that it would not be so serious. I was also hoping that the palate would not be involved, but unfortunately it was, in a fairly substantial manner. I think in the process from finding out and throughout the lead up to birth and his various medical appointments I have always been assuming everything will be OK and have tended towards the optimistic side, whereas quite often Eimhear had picked up on the worst side of things. Which for some of my friends who have known me a long time, they would probably have thought that my more natural tendency would be towards the pessimistic side. I guess it is part of my attitude that everything will be OK and nothing really bad will happen which will involve me having to do too much! I am proud of the way that I tempered some of the pessimistic thoughts - or worst case scenarios thoughts - that Eimhear was having with common sense and "it will be all right" thoughts. I am proud of us both for being largely in control of our emotions throughout this process. The worries and fears we have confronted over the past 6 months, together with the miscarriages and all the emotion that they have brought with them, really could have put a strain on our marriage and family. We could have fallen apart. Maybe we were close to it without realising it, who knows. And that strain for some other people going through similar scenarios may not have been bearable, but, I am sure like most other couples, we pulled together to get through it. I know that in whatever I have done over the last 10 years with Eimhear in my life, I have done it better when we are working as a team supporting each other. And I am, sure there were many times when I did not provide the kind of support Eimhear could have done with every day and at all times of the day, but I did try to and, luckily I have an understanding and supportive partner who has allowed me to play my part and take on responsibilities and be there. I am proud of Eimhear for all her diligence in her painstaking research and for arranging medical appointments to cover off the issues one by one. She has been religious in her preparation for Ultan's arrival and that has really paved the way for his progress towards surgery. Eimhear, you are a star and I am a lucky man to have you and our gorgeous new man in the family. Thank you for minding him inside you and outside!

So .... and what of him.... I am not sure that fathers get that instant and deep bond and love that many mothers get with their newborns. If anything they do get a sense of responsibility for the tiny bundle (and he was tiny compared to his brothers who weighed more at birth than Ultan does now at 41 days old!!) But there is something about Ultan that draws you in - he is already so alert and inquisitive. He fixes you with this soul-seeking look that makes you try and see yourself from his eyes and take a "long good hard look at yourself". Do you measure up as Dad material to this tough little guy? He seems to have me sussed out and looks past me now for something more interesting..... But occasionally he has given me that gap-mouthed smile with the lips turned up at the edges and his steely coloured eyes (like his mother) softening. Then my heart melts even more for him. He is an impressive boy. As stubborn as a mule/donkey/his mother. He has a lusty cry and a lovely cooing "awwooo" sound when he is content in his cot and looking to play / get into our bed. He is so interested in his brothers and smiles when he hears them messing. He is patient with their ministrations! And a word on that - his brothers have been amazing! They are so loving and attentive to him. Not nasty or jealous. Sure, they can be too rough, but they are only little boys of 6 and 4 who know no better and probably try to copy all the grown up stuff that we do with him (not that we are doing everything right or perfectly - I am sure we are far from it - especially with sleep deprivation!). I am so proud of their reaction to him and I know they will be the best big brothers!

We are a lovely, very masculine, family of 5 now!

The date is set and we have chosen Ultan's Plastic Surgeon

Today 2 weeks Ultan will have his first surgery and will have his lip repaired. Dr Lam Lai Kun will be the surgeon who will give our son his second smile.

We instantly liked Dr Lam when we went to see him while I was still pregnant.  He was very clear on his vision and stated clearly our options for Ultan's treatment plan and how important it was for us to wait and meet Ultan before deciding on which treatment to follow.

His history involved being Chief Plastic Surgeon at Queen Mary Hospital where part of his role was cleft repairs.  Now, he has a private practice and although I was initially worried about him not having much access to cleft babies, Dr Lam travels to China to preform repairs as well as having private cleft patients.

I feel extremely comfortable with Dr Lam performing Ultan's surgery.  As much as we have admired his past work, we are also going with our gut feeling as parents that Dr Lam is the best surgeon for us.

Not sure how I feel about the surgery.  As a parent I have bonded with my Son.  I have fallen in love with his wide smile.  It is almost as if I am going through a grieving process for having to let go of Ultan's first smile!

To quote Dr Lam "Babies are always fine, Mammies not so much"!

Dr Lam Lai Kun on the left performing surgery in China as part of the China Orphan Outreach Team

12.12.12 Urology meeting

12.12.12 may have been a busy time for Obstetricians delivering babies and for wedding bells to ring.  For us it was our first meeting with Urologist Dr John Ngan.  Since our 20 week scan with Queen Mary Hospital, we were led to believe that Ultan will probably have one of many things wrong with his kidneys from duplex kidney, to blockage to reflux.  What we did know was that Ultan's renal system on his left side was dilated and we would have to wait until he was born to investigate fully.

Dr John performed an initial scan in his office and it was from that scan that we heard the news, "in my expert opinion, Ultan will not require surgery on his kidneys".  It was such good news I asked him to repeat it for me.  However, he wanted to be sure and we were sent to Sanatorium Hospital for a scan with Dr Mark Chan who confirmed that Ultan had a slight dilation of 2mm on his left kidney which is considered very small in the medical world.

For now we celebrate this good news and hope that Ultan doesn't get any UTI infections and we will see Dr John Ngan in June who will hopefully confirm the dilation has reduced and the kidney has returned to normal.

I am actually looking forward to seeing Dr John's art again.  Very clever :)

PS When I was pregnant we also met with Urologist Dr Jennifer Sihoe who I would recommend as well.  We were introduced to Dr John Ngan through our Plastic Surgeon when I was investigating ways to reduce the number of times that Ultan had to go under general anesthetic.  Dr John Ngan has previously worked with our plastic surgeon who felt comfortable to perform his surgery with him.  Thankfully Ultan's renal system does not require any surgery.  

Our visit to the Cleft team at Queen Mary

This visit actually happened in mid December but due to our (still!) sleep-deprived, fogged up minds we are only getting around to writing now.

It is rather overwhelming to exit the lift on the 3rd floor of block S in the Queen Mary Hospital.  We were there to visit the Cleft team who have clinics every second week but the floor was crowded with patients waiting to see surgeons from all different fields.  We registered and took our seat and it wasn't long before Ultan was being treated like a rock star when some older children who have had their cleft repaired noticed Ultan's wide smile and smothered him with attention.  From this, other fellow patients were nosey to see what was all the excitment in the pram and voila, Ultan is surrounded and he loves the attention from all and sundry, giving it loads with his cooing :)

We didn't have to wait long to be called and first thing I noticed was Dr George Li who is the plastic surgeon who performs the cleft repairs was not there.  Dr Joseph Chung (I think!) was filling in for him but he does not do cleft repair.  Anyway, as I sat down Dr Chung examined Ultan for the briefest of moments - I had not even put my bum on the seat when he announced, OK, we will see you again in two months - WHAT?! we have been waiting to meet this team since July and this is it!!!

I didn't even get to say any of that as Mark had jumped in and asked the surgeon to hold on, could everyone introduce themselves and explain why they are in the room.  We went around the room starting with plastic surgeon Dr Chung, Antonio Tong and his team from Dentistry and beside me was Ms Wong, feeding specialist and speech therapist.  Mark and I straight away pounced on Wong (because we had asked for a feeding specialist and were told Queen Mary didn't have any) - we asked why she hadn't come to see Ultan when he was born.   I could go on with this conversation but frankly she annoyed me with her snigger of how well Queen Mary organise the feeding of cleft babies.  We were obviously talking about two totally different hospitals because her view of how her field is run in the hospital was not my experience only two weeks prior and when I explained my experience she actually told me I was wrong.  I had a choice to have it out with Wong or focus on the task in hand that was to discuss Ultan's treatment now. It has become apparent throughout that while QMH does indeed have experts, getting access to them or how they deliver that expertise is sorely lacking, at least in our case....

We explained to Dr Chung how we (and all cleft babies) had such a short window to get Ultan's treatment plan correct so we would like to discuss what was the best plan going forward for Ultan.

1.  The NAM - would Ultan require this?  Both Antonio Tong and Dr Chung didn't think Ultan would benefit from it.

2. Taping - again Dr Chung did not feel Ultan needed this as although Ultan has a wide gap, you can pinch the two sides of the lip together easily.

I have to say, I came out with mixed emotions over this visit.  I was really glad to meet Antonio Tong Head of Dentistry, who was extremely pleasant and very professional to deal with and I do hope he will be looking after Ultan in the future.  He actually had a feeding plate with him for Ultan but all of us agreed that Ultan did not require one.

However, yet again, I was extremely disappointed with the Plastic Surgical team.  I found the Plastic Surgeon to be condescending and he was frankly disinterested.  I would love for him to understand, to empathize with a parents wish to get the very best for their child and in order to do that they have to rely on the expertise of medics and it doesn't make it any easier when the medic is disinterested in discussing their patients/your childs treatment plan.

We walked out and Mark and I decided there and then we would not be able to use the Plastic Surgical Team from Queen Mary because we found it too difficult to communicate with them. but also they are supposed to be the acknowledged experts, yet they provide no support or information, especially in the pre-natal phase. Ultan's surgical treatment will be delivered elsewhere.

If we have any advice we can give to parents out there, is please do not be in awe of a doctor or other medical professional, who proclaims to be an expert on something.  It is all too easy to take as gospel what a doctor might tell you.  But we recommend that you go to every medical appointment armed with  questions that you need answers to make you feel comfortable with your child's treatment plan and who will be involved in it.  Keep asking those questions until you are satisfied.  If they are not answered satisfactorily, then make a fuss, ask more questions and do not be fobbed off.  If you are fobbed off, if you are in a position where you can do so, then vote with your feet and go elsewhere or, at least, seek a second opinion. Trust your gut instincts....

Movie night!

I am not sure if this was when Ultan was being introduced to Lightening McQueen or Buzz Lightyear by his two older brothers!

Happy New Year

Happy New Year Everyone  

We are gently easing our way into our new routine after having a very relaxing (sleep deprived!) family xmas.

My father sent me a New Years card which said

"A New Year is the perfect time for remembering all the things that are good in your world"

I am sharing as it struck a cord within me when I opened his card.  I hope all good things are happening in your world.

In the meantime, Ultan is practising his Irish charm preparing for St Patrick's Day.  Thank you Julia, we love the bib x

Ultan's first swim

Ultan went for his first swim when he was less than 4 weeks old and he loved it.  As he has a cleft palate he was unable to go under water in order to protect his ears.  I haven't researched it fully and we haven't met with an ENT surgeon yet so I am unable to explain fully but we played safe and let him enjoy.

 Look at his skinny little legs.

 The proud Daddy :)

Sean and Kai loved having their wee brother in the water with them.

Christmas Time

It was just a lovely time to cuddle up with our new expanded family.

Yes, we had a turkey that weighed more than Ultan!!

Yes we were sleep deprived.

But Santa Came

And the magic of Christmas was in our home made extra special with our wee Man