Saturday, 23 February 2013

Blog 65 - Plastic Surgeon is Happy with Nick

Nick went back to school, on the Monday of the second week of school, in February. He was very excited to be back with his friends.

At the end of that week we took Nick back to see the plastic surgeon. There was a mistake made with his appointment and we had to wait 1 1/2 hours for Nick's chart to arrive. We then saw the plastic surgeon's registrar for a minute. He checked Nick's wounds and said to come back in 2 weeks.

Yesterday we took Nick back again. This time we saw Dr Lewandowski. He was very happy with Nick's progress. He just said to massage Nick's cheek scars to help break up the scar tissue. He also said that Nick's mid-face will recess over time and his lower jaw will continue to grow, so even though at the moment Nick has a big over-bite this will lessen over the next 8 years. Time will tell if he will need any further plastic surgery. (At the age of 17 final surgeries or tweaks are performed).

An eye appointment was made for March 22, when Melissa is booked in to have her left eye muscle assessed. Until then he wont wear his glasses.

Dr Lew said to come back in December with Melissa which is their usual annual review time. Yay!

Nick glided out of the hospital - he was so happy!

Wow what a feeling to know that there probably won't be anymore plastic surgeries for Melissa or Nick, for at least 6 years!

© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Blog 64 - Memories of Nick from Birth-9 years

We very happily brought Nick home from the hospital. He was still a bit jaundice so we had to place the bassinet by the window so he could get some sunlight.

He had trouble breast feeding because his little mouth was so small, so we persevered for a while. By 6 weeks he was on the bottle, just like Melissa was.

We had some problems settling him and I took him to the Health Clinic's sleep clinic to get some suggestions. It wasn't long and he was sleeping well.

Nick also had silent reflux. The only indicator being that his head was continually tilted to one side. The Health Clinic nurse picked this up and we treated it with anti-reflux formula.

Apart from those few things Nick was an easy baby. He was placid and happy.

Melissa to begin with didn't cope very well. We were on the count down to Nick's birth when he suddenly made his appearance - so that, and the fact that she was woken up in the middle of the night on the night of his birth, stressed her out and she ended up being sick.

In earlier blogs I have talked about the operations that Nick has had, so I won't re-hash them...except to say that he was always a placid patient and coped with the ops as well as he was able to. Nick has always shown quiet courage.

Some things about Nick:

When Nick was little he loved Elmo and his favourite toy dog, Flynn. Flynn went everywhere with him.

We took Nick to playgroup, then he went to Kindergarten, then school.

He took his first steps in my classroom.

As a toddler Nick loved dressing up and playing with his big sister. Nick also loved puzzles.

Everywhere he went, Nick was accepted by the other children. In Kindergarten the teacher did do lessons on how our faces are all different because some of the children were asking questions about his eyes.

In Prep it soon became obvious that the girls loved Nick with his best friend being a little girl called Ezrie. He has progressed through school hanging out with his harem of girlfriends, being invited to their birthday parties...generally enjoying his life. Academically he is an A/B student.

As Nick has gotten older he has found that he has little in common with the other boys. He owns no trucks or cars or other 'male gender' toys. But he does own every known type of doll. He loves craft and fashion. Nick is a chatter box and he loves to swim, dance and sing.

In the last couple of years he has developed a liking for Spongebob and Moshi Monsters so at least he has something that he can take or talk about with boys if he needs to.
Nick is unable to do any contact type of sport or any sport which may impact his face because of his craniofacial surgeries, so that cancels out a lot of activities that he can do, that are male oriented....which I guess also adds to his more feminine qualities.

We have encouraged Nick to be himself. We have not tried to conform him to the world's ideals of what boys should be like, nor have we encouraged him to be feminine.  We were told by the plastic surgeon when he re-constructed Nick's forehead and he brought it a long way forward, that Nick would have a large frontal lobe so he would be sensitive. Whether this is the explanation or the fact that Nick has sisters, or whether it is just him...we don't know. But we accept Nick for Nick and we do not attempt to change him. Except Joe did refuse to paint his room pink!

Nick happily takes his dolls with him to church and out and about. The only place they don't go is school. Boys who like girlie things are not well accepted by the other boys so we try to protect him from being teased by helping him choose which lunchbox, bag etc. to choose which suit his personality but won't lead to teasing. Nick has a vivid memory of being teased by some boys when he took his Dora doll to school in Prep. We try to avoid those situations for him.

Nick knows that he is different to most other boys but he is happy with who he is. Melissa loves that he is into girlie things as she has someone to play with! I have learnt a lot from Nick. His self-confidence blows me away. The way he doesn't care what other people think of him, blows me away. I always wanted to fit in, even as a child. Nick has taught me a lot.

Happy Birthday Nick!

© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Friday, 22 February 2013

Blog 63 - My Memories of Nick's Birth on his 9th Birthday.

Happy 9th birthday Nick!

Wow where have those 9 years gone?

Let me cast my mind back 10-11 years to where Nick began.

Nick was hard work to conceive. I had miscarried the baby after Melissa at 11 weeks, just after my dad had passed away. I was devastated. After not conceiving for a while, temperature charts found that my cycle was all out of whack and I needed to go on fertility tablets. My ovaries became enlarged so I had to stop taking them. For months, every morning before getting out of bed, I would take my temperature, and map it on my temperature chart. When the temperature started to rise it meant I was starting to ovulate and the 'trying for the baby' began..every 2 days, rain, hail or shine. We had to mark our tries on the chart. Joe was sick one month so we didn't try and the obstetrician went mad at us!

I have a memory of being in the hospital ward with Melissa when she had her frontal orbital advancement...I had the thermometer in my mouth when a nurse walked in. She asked me if I was sick. I had to explain to her what I was doing! I felt really embarrassed.

We did end up trying, for more than a year. Not really sure how long. It was a long time. A marathon. Joe remembers vividly me saying 'Let's go.....Are you done yet?' Not romantic at all...with disappointment each month when I got my period....but we were able to achieve our desire for a baby....Nick

When my period didn't arrive we excitedly did the pregnancy test and it was positive. Then the stressful time of waiting to see if he would survive to the 12 week mark, as I had lost two babies at 11 weeks. He did!

At the first scan we were told that Nick's nuchal translucency test showed that he may have Down syndrome. The blood test ruled this out.

We continued on with the pregnancy. I felt good. At the 20 week scan we were told he was a girl...this then changed to a boy at the next scan.

The pregnancy continued on well. I enjoyed the pregnancy. Scans showed a high likelihood of Crouzon Syndrome so we went into the birth knowing that and being ok with that.

I was booked in for a c-section but Nick had other ideas of when he wanted to make his entrance into the world.

The 22nd of February 2004 was a 42 degree day. We had gone home to my parents' house for the day as they had air conditioning. That night there was a massive thunderstorm about 7.30pm. I wanted to have a shower but couldn't so lay on the couch to wait out the storm.

About 11pm I had my shower. After coming out of the shower I sat on the bed and felt a sharp pain in my abdomen and there was a gush of water. Melissa had been a planned c-section so I had not experienced my waters breaking...I presumed that this was what was happening but was unsure. I called out to Joe and we both panicked - what would we do? We rang the hospital and they said to come in. I quickly packed a bag and we rang Mum. We had planned for Mum to come and babysit Melissa, but she didn't want to drive 30 minutes in the thunderstorm in the middle of the we woke up Melissa and the three of us went to the hospital. Melissa was not quite 3 years old.

God was good for we drove through the storm without any dramas, and when we got to the hospital it stopped raining in time for us to get out of the car. I remember sitting on a pile of towels in the car, feeling very nervous. I was examined by the doctor and told that yes I was in labour and I needed to have the c-section immediately. I also was going to have the c-section performed by him, the on-call obstetrician, not my own.

There was no one to babysit Melissa, so Joe and Melissa waited in the waiting room whilst I was prepared for the emergency c-section.

The drop in air pressure that night caused many women to go into labour - I was not the only one.

When Nick was born I saw him and knew straight away that he had Crouzons - he had a fused ridge of bone down his forehead and his eyes were bulgy. I did not need to ask.

What was freaking me out was that there was no cry,. I was calling out the doctor, 'Is he alright?' and there was no answer. I continued to call out to the doctors.The adrenalin was pumping through my body and my heart was beating so fast! I didn't want to lose this baby!

Eventually the nurses reassured me that Nick was alright. I wouldn't believe them until they showed him to me as he still hadn't cried. Nick needed oxygen, a massage and he needed to be cleaned out... But Nick as we now know is a fighter and he was ok. His apgar score at 1 minute was 6 and at 5 minutes was 7. He was 2950g and 48.5cm long..

I saw Nick again in his humidicrib when I was in recovery. All was fine. Joe and I were ecstatic.

He looked like a baby monkey with dark hair all over him. We were told that the dark hair was due to him being 3 1/2 weekx early - he had not cooked long enough.

The hardest thing about Nick's delivery, was not having Joe there to tell me what was happening. I felt so alone.

My obstetrician had organised for an experienced paediatrician from the Royal Brisbane Hospital to be at my planned c-section so he could look after Nick. Unfortunately because Nick was born out-of-hours we had the on-call paediatrician. This paediatrician had only seen Crouzons in her uni books. She tried to tell Joe that Nick did not have Crouzons and that he did not have craniosynostosis. Joe laughed at her. The fused ridge of bone down the middle of Nick's forehead was so obvious (I think she was only looking at the typical suture that fuses with Crouzons, but my family does not follow the general diagnosis, and that suture was still open) and his bulgy eyes were so obvious! We obviously knew way more than she did! She wanted to send us to a particular hospital, but again Joe told her that we needed a referral to the Mater Hospital, to see Dr Lewandowski, who was Melissa's plastic surgeon. We were not impressed.

The paediatrician wanted us to keep coming to her so she could learn more about Crouzons....we did not see her again after his 6 week check up!

After a week in hospital we took Nick home.

© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission

Friday, 1 February 2013

Blog 62 - Op #9 Nick's Lefort III RED Halo Is Off!

We are finally on the other side!The halo was removed last Tuesday 29 January. It was put on last year on Tuesday 8 October 2012.

The day was a long one.

There had been flooding from an ex-tropical cyclone the few days before the operation date and to begin with we didn't know if we were going to even make it to the hospital, but the main roads into the hospital were accessible.

After we arrived we were told that the Plastic Surgeon was coming up from Sydney where he had been for the weekend..... and he had been delayed at both Sydney and Brisbane airports so Nick's operation would be later than expected.

Nick was 4th on the list.

We arrived at the hospital just after 8am and he went into theatre at 2.15pm. It was a very long emotional day for Nick. The Starlight Room gave some relief when he was teary and hungry.
He jusr wanted to get in that operating room and get it off!

Whilst in the Day Unit Waiting Room Nick had numbing cream applied to his arms and hands. The plan was to put in a canula before surgery and he was to be given a sedative. Then the Plastic surgeon would cut the wires that the anaesthetist could put the mask on Nick for him to go to sleep. The numbing cream the nurse put on his hand did not work having been on too long, so he felt the canula go into his hand. He cried and he said he could feel it and it really hurt - Nick has a high pain threshold so I knew it must be really hurting him! I held in my tears and comforted him. It is so hard watching your child in pain.

After the canula was in and the sedative given, Dr Lewandowski comforted Nick to calm him as Nick was starting to get scared. He cut the wires that attached the halo to his mouth plate and cheekbones and removed the black bar so the anaesthetist could put the gas mask on.

Nick was nervous but brave. He took deep breaths of the gas and slowly drifted off to sleep.

Once asleep I kissed him, prayed a silent prayer and I had done so many other times.

The waiting then began. It wasn't too long and Matt the Plastics Registrar appeared in the Parents Waiting Room to tell us that everything had gone well. The halo had been removed, the titanium plates in his cheekbones were gone and they had shaved some sharp bone off the cheekbones to make a better shape. He had cuts on his cheekbones with dissolvable stitches, and wounds above his ears.

We saw Nick in Recovery and then he went back to the Day Unit Ward. He was sore and a bit spaced out but ok. He ate and drank and it wasn't too long and we took him home. We got home about 7pm.

Boy did Nick look different!

The nurse told us to put ice packs on his cheekbones to help with the swelling and bruising that was starting..and to give him nurofen.She had already given him some paracetamol.

He slept on the banana pillow which kept his head at an angle to help with draining of the swelling.

This has continued. We are putting Chlorsig cream on his cheek scars to help prevent infection. Later we will use Vitamin E cream to help the healing.

Nick does not like his new look. Melissa said exactly the same thing after her halo came off.

It is a huge deal psychologically to look into the mirror and see a different person staring back at you.

Because of his swelling and bruising he has not liked going out and hasn't wanted to go and see his friends at school...but that will come.

We are praying that the bruising and swelling around his eyes will not last too long..and he will be back at school with his friends real soon.

Nick 1 February

© 2012 by Jenny Woolsey
No part of this blog may be reproduced without prior permission