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Today is my first birthday, and I am going to update my own page since my Mum and Dad haven’t done so yet.

I first rolled over when I was 5 months old, then by 6 months I was rolling from one room to another. At 7 months I could sit by myself for a few minutes, by 8 months I was sitting really well and playing with toys. I started crawling at 8 ½ months, which is also when I started pulling up onto things. Now I can climb onto absolutely anything and love it. I can climb up and down the stairs; I have even learned how to come down backwards properly; and I can climb up into my highchair. I have taken a few steps on my own already but am not walking confidently just yet.

I got my first tooth just after 6 ½ months, now I have 14 and another 2 on the way. I have been sleeping through the night since about 6 months, except on the odd occasion while teething. I like brushing my teeth with my very own toothbrush and I am getting much better at it. I also know how to brush my own hair and I think I do a good job, even though mum often does it again after me. I said my first words at 8 1/2 months, now I babble on in my own way all the time, some that Mum and Dad can understand and some they can’t. I sing and smile and laugh all the time too.

I love my food, and eat really well. I started on rice cereal at 4 months old, and then Mum introduced banana, apple and sweet potato over the following weeks. I decided I didn’t want to breast feed any more when I was 7 ½ months. By then I was eating lots of different foods. Now that I have so many teeth I can eat almost anything. I can use a spoon, but still have trouble getting the food from my bowl onto the spoon. Sometimes it is just easier to use my hands, and so long as the food gets into my mouth I don’t mind. I can drink really well with a straw and am getting good with a cup. I have started replacing my formula with cows milk lately and have really enjoyed it. I still have a bottle with formula just before bed, but Mum thinks she will stop that soon, we’ll see about that.

I love books. First of all I would chew on them, then I tried tearing them up, but now I am getting much better. I have my own bookshelf and love taking books off and putting them back (sometimes). I have a few books in my cot. Mum and dad often put me to bed, and I will turn the pages of my books, look at the pictures and feel the patches. Sometimes I even move my finger across the words like Mummy does when she is reading to me. I usually fall asleep reading. When I wake up in the mornings I read for about ½ hour before I wake Mum and Dad up.

I haven’t really spent a lot of time around other children yet, but I do have a few friends. I see Jaiden who is 2, and Mitchell who is also 1 the most. Josh, my cousin who is 3 loves playing with me too. I haven’t met my other cousins yet, but I can’t wait to play with them. I love watching other children playing, either in the church playgroup or at the park. I learn lots just from watching them. My favourite toys are my hospital bandage bear that I always sleep with and my Smurfs, I love putting them in and out of their little house.

I love being outside, and spent every weekend during the winter with Mum and Dad outdoors in the forests training and racing our sled dogs. We had lots of fun, and even camped in a tent a few times. It got very cold and Mum and Dad over dressed me so I got hot. I have won lots of hearts in the dog circle and I have managed to get Alex and Nigelle to do whatever I want. Mum and Dad also took me on a big holiday for a week to the snow, which I loved. I got more sleepy than usual because of the altitude, but my breathing was fine. I liked eating the snow and watching the dogs race the best.

We went for lots of very long drives to go to races, sometimes it was a 10 hour drive each way, but I love the car and was always a good girl. I even slept well when we stayed in hotels. I am very good at restaurants, and Mum and Dad love taking me out with them. I have my own special chair that attaches to the table so I can be with all the grown ups. Mum and Dad haven’t been out without me yet, but I am trying to arrange something for them.

I had my Christening when I was 6 ½ months old. It was very small with only close family. Nanny and Poppy, Aunty Nic, Uncle Pete and Cousin Josh travelled to be with me, and we had some fun time together. All my family live a long way away so I don’t get to see them as much as I would like to. The church we go to is very nice, although I find it hard staying quiet sometimes, and I like to sing when everyone else is praying. Nobody seems to mind though.

I have also caught up with James, my HLHS buddy from hospital who will be turning 1 soon too. We went to the Zoo to celebrate turning 6 months old, and our Mums stayed in a hotel for a night with us to spend some special time together when we were 9 months old. James is also at my house now to celebrate my first birthday. He is a very special friend.

As for seeing doctors, I still see my paediatric cardiologist every 3 months and my paediatrician every month. They are both really pleased with me. I used to see them both a lot more often but not anymore. I have had all my vaccinations and a few extra ones like chicken pox, the flu vaccine and Prevenar, which I will be getting next week. I don’t even cry when I get a needle. I still have some medicines, but I don’t notice it because it is with my breakfast. I have lisinopril and aspirin each morning and that’s it!! I was on a few more when I first got home from hospital but they have slowly been reduced or changed. I like it now because I hated taking that yucky Captopril all the time.

I haven’t been sick yet, although I had a few cold symptoms for a week when I was teething, just a runny nose and slight cough. I also had constipation for a while when I was first introduced to solids, but we sorted that out.

I’m still not really sure what all the fuss is about my health though. I am just fine and intend letting everyone know. I know my Mum and Dad still get scared for me sometimes, and I have even caught them crying when they thought I couldn’t see them. HLHS is a very serious condition, and there are no guarantees, but there are no certainties in life for anyone so I plan to enjoy every second of every day.

That’s all from me. I am sure that Mum and Dad would love to hear from anyone who would like to know more so please e-mail us.

Bye………………

Taylor is 18 months old (22 March 2002). She had her cardiac catheter a few days ago, and all went very well. She is a candidate for the Fontan which wont be until she is around 4 years old. Fingers crossed she will be intervention free until then. She will only need to visit her Paediatric Cardiologist and Paediatrician three times a year from now on and remains on lisinopril and aspirin once daily. Her scar is almost non-existent, and you would never guess she had a heart condition. She weighs 10.6kgs and is 78.5cm tall.

Taylor has the most beautiful denim blue coloured eyes and her hair is a mass of sandy curls. She is very bright and spirited. She shows absolutely no developmental delays and at this stage has no physical limitations either (she runs faster and climbs higher than many of the children in her Gym class). We spent a wonderful summer with her, with a lot of time going for walks to the park and beach. She just loves being outside. Her fluorite activity is eating in cafes with her mummy and loves baby cappuccinos (milk froth with a few chocolate sprinkles). She is the best eater you could imagine and gives any toddler a run for their money in that department. Every morning we wake up and can’t believe just how lucky we are to have her

May 2003

Taylor has been in day care two days a week since January 2003. She thrives on the interaction with other children and is learning more and more each day. We are very biased parents, but think our growing daughter is incredibly beautiful and talented. She still has the softest blue eyes, flowing locks of golden curls, and manages to win over everyone she meets. She is often naughty and pushes the boundaries in an effort to test our limits as all 2½ year olds do. At the same time she is incredibly sweet and overly eager to learn. She loves playing in sand pits (or piles of dirt or rocks) and riding her little Bob-the-builder trike, counting and adding, singing, playing games, painting and drawing, her music lessons at Pre School, and anything where she can climb. Given the chance she would spend all day outside playing in her cubby house or the dirt.

Pre Fontan Update (2003 / 04)

Taylor has always tried to keep up with other children her own age and older. Although her energy levels remained high, her stamina and ability to perform physically were decreasing. She eventually had difficulty walking up a single flight of stairs, and by night time we would often need to carry her to bed. We went everywhere with a pram so she could always rest. Her oxygen saturations were constantly dropping and she saturated in the low 70’s at rest prior to her Fontan.

In winter she seemed to struggle more than the other children, and had difficulty breathing the cold air. She suffered croup on a number of occasions, including being hospitalised one of these times. She was very blue around her mouth and fingers all the time. We constantly had strangers stopping us in the street to tell us that our child was cold. The most common questions we were asked were “Is she wearing purple lipstick?” or “Has she just had a purple iceblock/lolly?” We eventually gave Taylor a clear lip balm to wear whenever she went out so she could say “yes” she was wearing lipstick.

In the summer before her Fontan, we took Taylor to Rockhampton, central Queensland, to celebrate a family Christmas. The temperatures rose to 40+ degrees Celsius, and it was extremely humid. Taylor coped better with the heat than we had expected, although still looked blue.

Taylor’s Cardiologist decided to have her Fontan in February 2004, before she had to endure another winter. In the months leading up to surgery, we mentally prepared Taylor. In typical Taylor fashion she took it all in her stride and was actually excited about the adventure. She delighted in telling everyone “I will have drains sticking out of my chest, and I will be thirsty and a bit sore”. She accepted that the surgery would be unpleasant, whilst remaining positive and proudly telling us “I won’t be so puffed anymore after my operation”. She compared herself with her Mum being pregnant and awaiting a caesarean delivery. She would often say “everything will be alright after we have our operations Mum, and we won’t get puffed any more when we walk up the stairs.” Her courage and attitude make us proud.

Taylor’s Fontan – 26 February 2004

At three and a half years of age Taylor underwent her Stage 3 completion fontan at the Royal Children’s Hospital in Melbourne. She remained under the care of her previous surgeon, Dr Christian Brizzard, who took particular interest in her.

Taylor waited from 6.45am until just after 1pm for surgery, due to a back log in surgery and lack of beds in ICU. During this wait we had to keep her quiet, without food or drink. Being the active little girl that she is, she amused herself by playing basketball, soccer, car racing, and other games in the pre-surgery ward. She tired us out completely. At one point we just felt like picking her up and walking out of the hospital. There couldn’t possibly be anything wrong with this girls heart function! Finally the time came, and they took her away from us once more. It was harder this time than for previous surgeries as Taylor had a full comprehension of what was going on.

About 6 hours later Dr Brizzard called to say he was finished and that he was very pleased with how the surgery had gone. He said that her aorta was bigger than he had anticipated, causing some minor complications, otherwise everything went as expected. He left a 3.5mm fenestration, and was very pleased with how she was going. It was another 2 hours before we finally got to see her in the ICU, and another 2 hours after that she began to come out of her anaesthetic.

The first night after surgery was not pleasant. Taylor drifted in and out of sleep and was in obvious discomfort and pain. This part was heart breaking for us. When she was awake she was very demanding and insisted on being allowed to have a drink – which she was not allowed. She was slowly weened down on the morphine and eventually extubated at 2.30am the following morning. She took some time to stabilise, but coped well considering. Less than 24 hours after surgery she was transferred up to Ward 7-West.

Her overall recovery went well, despite some issues associated with fluid levels as a result of too much Lasix being administered. It also took a while to stabilise her on warfarin, and fluid restrictions were a great challenge for all of us (Taylor has always been a very big drinker). She had the first of her chest drains removed on day 2 after surgery, and the remaining two drains were removed on day 11. In the meantime she did plenty of physio, became accustomed to walking around with her two drains (she actually wanted to keep them as a souvenir) and loved her visits to the Starlight room. The fact that she was inconvenienced by the drains and lines was no barrier to her. She took it all in her stride.

She was eventually released back into our care on day 14, and just over a week later we were allowed to leave Melbourne and go home. She was saturating in the mid 80’s, was already displaying more energy than before surgery, she had stabilised on warfarin and couldn’t wait the get home. It was like nothing had happened – except she already had more energy.

There is so much more we could say about our time in hospital, as like all parents we travelled the emotional roller coaster. We knew that we could not have been in a better hospital anywhere in the world and were once again incredibly thankful to Dr Brizzard and all of the staff. They treated Taylor like a little princess.

Post Fontal Update

We returned home from Melbourne in March 2004. In April, Taylor started an excellent 3 year old Pre-school program, two days a week. She did extremely well, and had we not told the school about her condition they never would have known. She did lag behind on some of her gross motor skills for a while; but with practice, and time to recover after surgery, she soon caught up with the other children. She was so excited when she could jump; hop and run like the others, and couldn’t wait to ride her bike. She mastered running up and down the stairs very quickly too. Now she plays on the monkey bars, swinging upside down by her legs and jumping off – a great concern for us and her doctors.

At her last check up with the Paediatrician Taylor was on the 75^th centile for both height and weight. Pre fontan she was always on the 25^th centile. It is amazing what difference oxygen and the ability to be more active can make.

In July of 2004 Cameron Grace Colvin entered our world. Taylor now has a baby sister to take care of - she adores being a big sister and is extremely caring and responsible. We had a family holiday at the beach in December 2004 where Taylor watched over every move her little sister made. Taylor also decided that boogie boarding was a great sport, and loved the beach.

In February 2005 Taylor started 4 year old Kinder, five days a week. She physically keeps up with the other children and has a preference for playing physical activities with the boys. She is doing really well academically. The teachers have said she is a bright child, and they look forward to helping her reach her full potential. She loves numbers, enjoys addition and subtraction, writes her name, is extremely creative in her artwork and can do everything asked of her at school. She particularly enjoys sport, music, drama and art. Other than monitoring her activity when her INR results are too high, Taylor needs no special attention at school for her cardiac condition.

We have not enjoyed managing Warfarin, as so many things from diet, vitamin K, infections, other medications, high temperature, growth spurts, and more can affect the INR levels. We are concerned when her levels go too high and try to minimise her physical activity when this does occur – especially since Taylor tends to be very boisterous and full of adventure at the best of times. Outside of school activities she loves swimming lessons and is doing very well. She would also like to start dancing and is very keen to learn the violin.

Taylor is a highly spirited child in every sense, and tends to be more intense, sensitive, perceptive, and persistent than other children her own age. We love her for the strong spirited child she is, and are so proud of her accomplishments and achievements. We are confidant that her quality of life is nothing short of incredible. We are grateful that we have her, and would not do a thing to change her. Although we grieve for her little heart, to the young – nothing is difficult.