Friday, February 27, 2009

Under The Tree - February 2009
How long have you been blogging for? Why did you start? What do you want from writing?
My name is Julie, I have been blogging since June 2008, it was just recipes though, no thoughts, I was really trying not to think too much then. A Blog was just a way to keep some recipes together for a job I was doing. But I discovered a blog is a very useful tool.
I started this blog about Thomas only a week and a half ago, after I discovered Carlys "Names" blog and "Love Reigns". I read stories from some other followers blogs, I was motivated. I wanted to make a memory scrapbook blog and have all the emails that I wrote about Thomas and pictures and poetry safely in the one place. I had emails stashed in 2 different computers and on the internet. Photos were not very easy to find either. I felt that it was time to get everything one place. It is Thomas' Anniversary tomorrow, he died on the last day of summer last year (29th February). It was a leap year last year, so we are recognising the 28th as his anniversary this year. There is a kind of audit of my feelings going on at the moment.
I probably would have left my blog at that point (just as a memory page) until Carly invited us to come under the tree. So here I am for the very first time sharing my feelings directly on my blog. I feel that I kind of belong here. I can relate to so many of your stories, thoughts and feelings.
Where is safest place for you to share your feelings? Is there anywhere you feel completely accepted just being however you are really feeling?
I haven't really found a public place to share my feelings yet. I can say anything to my counsellor, that is important. I go to a group, but the group is about everyone, not just about me. It's important to be sensitive.
Can you recommend any books that you have read that have given you a new insight, hope or courage in this new life you find yourself in?
I read a book called "The Shack". Its about a man whose daughter goes missing and how he changes over the years that follow, and about his pain, how he comes to a place of peace within himself, and about how he comes to a place of peace with God.
He was angry at God for a long time. I have been angry at God too. I have sometimes felt like a failed Christian, because all my prayers (and everyone elses) didn't bring about healing. The Bible gives me hope, it brings peace into my life. I don't feel very courageous.
How would you describe yourself before you lost your baby. How have you changed, who are you today?
I was not a very emotional person. I probably lived on the surface of things. I was very independent. I didn't know much about grief, or about or deep emotional pain. I had no idea how someone that lost a baby would feel.
I am still a mother, I would rather do things with my other 3 boys, than talk on the phone or do housework. I have been a little more emotional towards my children than I ever have. I feel like I have more capacity now. I am still a bit of a mess (see some of my poetry). I am still living with a huge box in the middle of my living room filled with most of Thomas' things. It has a pram, car seat, bath, change mat, I don't know what else, but it is a big box. I still haven't finished the thank you notes from his funeral. I don't think I will. I didn't want my baby to die and I don't want to thank anyone for coming to his funeral. I have also noticed that I don't want to wear my old clothes anymore, the ones that I wore when I was pregnant and before I was pregnant. There are too many memories in those clothes.
How do you think you are coping? Do you see any light in this road or is it all dark right now? Where do you imagine yourself to be in a years time?
I am conscious of letting my grief take its course. Shutting it down can mean getting really sick and I dont want that to happen. I wrote this on my blog "Grief is not logical, I do not know where it will take me day by day, but I have found that it is better if I don't resist, it is better if I let it take me where it will."
In one years time I hope that I will be able to function more naturally. That I will have more friends, that I will care more if the house is clean, I will care more about looking after my body.

Wednesday, February 18, 2009

Thomas' name in the sand

in the snow at Whistler

in the little bit of sand on Pebble Beach on Martha Point Mornington Peninsula

Tuesday, February 17, 2009

If I Wished on Wishes

Memories are the places I go to enjoy
Time spent quietly with my little boy
Sometimes others see that I've gone
Mostly, before they know it, I'm home.
Longer vacations might take all day.
Those are the days I stay in Pj's.


Since I lost you I can't stop searching.
I do it without even thinking.
I've Googled your name, and searched the maps,
panned North and South and zoomed up close.
You're not on the social networking sites either,
The picture isn't yours on Facebook friend finder.

If you had email I'd send you one every day.
If you had a mobile I would SMS, Hey :-)
If you were here I would take your picture.
And that cute T-shirt, it now would have fit you.
I'd round up a million memories of you as you are,
and store them all away in my heart.

I know you are somewhere nearby,
not in the ground and not in the sky.
You are somewhere that I cannot go,
I'll still keep on looking for you, even though,
I know it wont be you when I get close
(because life is better when lived with hope).

Its just not fair that you went so soon,
I know you were ready, I suppose I was too,
And I know its not a permanent goodbye.
But, I miss you. I miss you all of the time.
And, if I wished on wishes, my wish would be to,
hold you again, and remember every part of you.

by Julie Cozens

The Shoes I Wear

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I dont think I can take another step
Yet I continue to wear them.
I get funny looks wearing these shoes.
There are looks of sympathy.
I can tell in other's eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on you can never take them off.
I now realise that I am not the only person that wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try to walk in them so they don't hurt quite as much.
Some have worn these shoes so long that days go by before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Author unknown

The Truth

"You are a great God.
Your character is Holy.
Your truth is absolute.
Your strength is unending.
Your discipline is fair.
Your provisions are abundant for our needs.
Your light is adequate for our path.
Your grace is sufficient for our sins.
You are never early, never late.
You sent Your Son in the fullness of time and
will return at the consummation of time.
Your plan is perfect.
Bewildering. Puzzling. Troubling.
But perfect."

- Max Lucado

When Tears and Broken Hearts Agree

Commission new life, with hope
our brand new person,
first child, a brother, grandson
love dwells in every thought

Belly swells, a promise of life
fluttering begins, plans take shape
changes inside, waiting outside
the craftsman takes time

Stories told in the dark of night
how he will this
and I will that
excitement and longing grows

Scenes imagined on cue
malls an ever flowing baby parade
modern strollers, co-ordinated, accesorised
proud mums, I thought I'd be one too

Finely tuned, expertly crafted
so delicate, so dependant in the womb
doctors watch and wait, a few weeks more
horizon growing stormy, cold with fear

My child, my baby so close inside me
helpless to help him, pray
please let him be born Lord
alive to see his daddy's face

Hope and wait, pray and pray
parents today, a cry signals relief
now we are three, happy
marathon ran, all survived

Preparation is never enough
on the backdrop of fluffy blankets
minds wrestle to grasp
reality of anatomy gone wrong

Unknown words tumble forth
Patient and kind doctors explain
Surgery, transfer, emergency transport
first we will bring him in,

Maker made him, picked just for us
He knew we loved him
right from when he was really small
best place now, third floor somewhere really huge

Education, information learned, relayed
BP, HR, platelet, chromosome
too much, not enough, chimes call out
intense, neonatal, intense

Surgery stopped, the best know when
delay will save lives, he'll be stronger then
baby so still, so many machines
time passes by in fifteen minute alarms

Hope floats then drowns
be brave, stay positive, pray
make milk, it's something only I can do
cherish life, collect memories, be there

Belief outstrips, setbacks overcome
success, anatomy at last set right
hope and wait, pray and pray
Soon we will be a family at home

Created for a season, a purpose
time to leave, dignity
no more to be done, circle closing
tears and broken hearts agreed

Peace, loving arms our parting gift
yours, a whisper on the wind
richer and wiser we grew
welcoming and farewelling you

Bereaved, desolate days without end
patience till we meet in the next place,
we'll wait to see you there
in the garden, not on the third floor

From the heart of a bereaved Mother

This is now what "normal" is...
Normal is having tears waiting behind every smile when you realize someone important is missing from all the important events in your family's life.
Normal is feeling like you know how to act and are more comfortable with a funeral than a wedding or birthday party...yet feeling a stab of pain in your heart when you smell the flowers and see the casket.
Normal is feeling like you can't sit another minute without getting up and screaming, because you just don't like to sit through anything.
Normal is not sleeping very well because a thousand what if's & why didn't I's go through your head constantly.
Normal is reliving that day continuously through your eyes and mind, holding your head to make it go away.
Normal is having the TV on the minute I walk into the house to have noise, because the silence is deafening.
Normal is staring at every baby who looks like he is my baby's age. And then thinking of the age they would be now and not being able to imagine it. Then wondering why it is even important to imagine it, because it will never happen.
Normal is every happy event in my life always being backed up with sadness lurking close behind, because of the hole in my heart.
Normal is telling the story of your child's death as if it were an everyday, commonplace activity, and then seeing the horror in someone's eyes at how awful it sounds. And yet realizing it has become a part of my "normal".
Normal is each year coming up with the difficult task of how to honor your child's memory and their birthday and survive these days.
And trying to find the balloon or flag that fit's the occasion. Happy Birthday? Not really.
Normal is my heart warming and yet sinking at the sight of something special my baby loved. Thinking how he would love it, but how he is not here to enjoy it.
Normal is having some people afraid to mention my baby.
Normal is making sure that others remember them.
Normal is after the funeral is over everyone else goes on with their lives, but we continue to grieve our loss forever.
Normal is weeks, months, and years after the initial shock, the grieving gets worse sometimes, not better.
Normal is not listening to people compare anything in their life to this loss, unless they too have lost a child. NOTHING. Even if your child is in the remotest part of the earth away from you - it doesn't compare. Losing a parent is horrible, but having to bury your own child is unnatural.
Normal is taking pills, and trying not to cry all day, because I know my mental health depends on it.
Normal is realizing I do cry everyday.
Normal is disliking jokes about death or funerals, bodies being referred to as cadavers, when you know they were once someone's loved one.
Normal is being impatient with everything and everyone, but someone stricken with grief over the loss of your child.
Normal is sitting at the computer crying, sharing how you feel with chat buddies who have also lost a child.
Normal is feeling a common bond with friends on the computer in England, Australia, Canada, the Netherlands and all over the USA, but yet never having met any of them face to face.
Normal is a new friendship with another grieving mother, talking and crying together over our children and our new lives.
Normal is not listening to people make excuses for God. "God may have done this because..." I love God, I know that my baby is in heaven, but hearing people trying to think up excuses as to why healthy babies were taken from this earth is not appreciated and makes absolutely no sense to this grieving mother.
Normal is being too tired to care if you paid the bills, cleaned the house, did laundry or if there is any food.
Normal is wondering this time whether you are going to say you have two children or one, because you will never see this person again and it is not worth explaining that my baby is in heaven. And yet when you say you have 1 child to avoid that problem, you feel horrible as if you have betrayed your baby.
Normal is avoiding McDonald's and Burger King playgrounds because of small, happy children that break your heart when you see them.
Normal is asking God why he took your child's life instead of yours and asking if there even is a God.
Normal is knowing I will never get over this loss, in a day or a million years.
And last of all, Normal is hiding all the things that have become "normal" for you to feel, so that everyone around you will think that you are "normal".
------ author unknown ------

Pictures of Thomas 9/11/07

Hello everyone,

Some of you already know that there are pictures of Thomas that you can view on the internet, for the people that I haven't told yet, here is the link...

I have updated the pictures this morning.

Thomas had a Tracheostomy performed in surgery yesterday. We can now see his face because his breathing tube (Trachy) is in his neck. This is likely to be a temporary measure and could stay in place for a few months or a bit longer. It means that he now has a safe airway. Thomas is still being assisted to breathe with the ventilator but that will be scaled back and hopefully removed in the next couple of days. It is just supporting him at present while he recovers from this operation.

We hope that Thomas can have his TOF/OA repaired next week, it depends on how well he recovers from this surgery and how he is going with the Pulmonary Hypertension (blood pressure in the arteries going to his lungs). Link to info about TOF/OA is below.

Thank you to everyone who is supporting us with prayers and meals, and thankyou to the drivers who have been helping me get around. Thank you for your visits, flowers, cards and gifts. We are still on the waiting list for Ronald McDonald house, we are hopeful of a room before next week comes around.

If you know of someone who would like an email update please send me their email address and I will include them next time. Feel free to forward this email yourself.

Lots of love from all of us,

Julie, Dean, Rowan & Thomas


Thomas Update 20/11/07

Hello everyone,
I am at the Royal Childrens Hospital typing this. We are now living at Ronald McDonald House at 16 Gatehouse St Parkville. We are on the top level which means climbing stairs to get to our room, I am getting fitter all the time.
Thomas is going well at the moment. Over the past week we have had some setbacks, things seem to have turned around yesterday and today. Some of the setbacks were, his Lymphatic drainage system were leaking fluid into his chest cavity, called Chyle Thorax. Firstly the fluid was drained using a needle and syringe then there had to be a drainage tube inserted which was a bit tricky and took a few goes to get it in, it ended up draining about 140ml. The fluid accumulation has stopped and the drain is now clamped. It is being opened a couple of times a day to see if anything else is there to drain away and he is having daily chest xrays.
Feeds have been stopped for a week and they are considering starting feeds again soon. Breast milk is out for now as he needs a special formula. The other thing that happened is Thomas' IV lines stopped working and they tried to get other veins to work but couldn't, all the good ones had been used, they even tried for a vein in his head. Thomas had too much fluid and that made it extra hard to get a line in. Thomas now has his medication going into his thigh where they have put a deep vein line, they had to make an incision to get to it. That can only stay in for a week (until Friday) because the infection risk gets too high after a week. Hopefully there will be a vein recovered and ready to take an IV drip by then. We are really hopeful that he wont need
another IV line until his next surgery.
Today Thomas is only being assisted to breathe with the ventilator 10 breaths per minute which is a drop from 40bpm on Friday. Also his medication is being dropped back little by little. On Saturday we heard him cry. It seems that he manages to get some air around his Trachy to make sounds with. You would have never thought that you would be so glad to hear a child cry. He is also a bit more awake and he is opening his eyes a couple of times a day and trying to get his hand in his mouth. He is wiggling around too. The best news is that they are going to try and get him onto CPAP tomorrow and get him off the ventilator. It is still assisted breathing but he will be doing all the work himself. That is a huge step forward. Hopefully for us we will be able to have a hold of him again.
We are playing music to him and reading to him he likes to have his face touched and hand held and he hates getting washed (its probably a boy thing).
Thanks again to everyone for your prayers and meals I have attached a photo you can print out if you like, I hope to see you all soon.
PS. Dean is working and staying at home part of the week and coming in here the other part. Rowan has started school at North Melbourne Primary.

About Thomas 29/11/07

Hello everyone,
We are still at the hospital as you are probably aware. It is day 43 today and Thomas is going very well he was 6 weeks old yesterday. Thomas was moved to a new room (Number 8)
which is smaller and is quieter because his bay in Room 5 was needed for a more critical baby and Thomas is pretty stable at this point. That was good news. He has been weighed again, 5.095kg, that is about 11lb 4oz in the old scale.
I was able to hold Thomas yesterday as well, that was very good. He is a very cuddly baby.
We had a picture taken. I have been playing music to him, I am playing Sues music over and over, its very familiar because he has heard it every week at church. There is another CD with classical music that I am playing too. I am still expressing milk even though Thomas is not having it at present, I am hoping that he will be able to have it later on. Other medical stuff from last week.... The transfer from Respirator to CPAP has gone fairly smoothly. Thomas had a couple of events where he had to be put back onto the respirator fairly quickly, but he was soon back to CPAP and has remained with CPAP only for the last 4 days. The Chylothorax (fluid collecting in his chest cavity) has stopped and Thomas has has his chest drain tube removed yesterday. The deep vein IV lines were removed without infection or incident. His milk has been increased to full feeds without incident so all medicine is now being given orally (into his tummy tube). The morphine dose was weaned back 10% yesterday and will be weaned further on Saturday. We are weaning him back because he has had the Morphine for so long and he will need to have the full pain reliving effect of the Morphine when Thomas has his major surgery in about 1-2 weeks, that is having his Oesaphagus repaired.
Thomas is still being treated for Pulmonary Hypertension with Sildenyfil (Viagra). He is also being treated for an underactive Thyroid, which we are waiting for the results on the full testing that is being done. There is discussion about doing a study on his airways to see just how extensive the Bronchial Malachia is and at present they are trying to find the lowest possible air pressure that Thomas is comfortable breathing at. We got down to 8 but had to go back to 10 today.
It seems like a lot to take in, I am sorry, some of us just love details though.
Please feel free to forward this email to anyone who is interested. If you would like to reply that would be good. Its nice to know if this email gets to the intended destination.
Rowan is going quite well at school, he is still being himself, lots of fun and really great company, he is great with small children which the kids at Ronald McDonald House and their parents enjoy. We have had a few outings, most notably to the Melbourne Sports & Aquatic Centre and the Geelong Adventure Park (Courtesy of Ronald McDonald who also gave a magic show). Dean is working at the Shopping Centre 4 days a week and coming here the rest of the week. Josephine is able to feed the dogs on the weekends thankfully. We have had visits from both Grandmas during the last week and also Thomas' Great Aunt Shirley from Robinvale. Thank you to everyone for your visits, prayers and meals (we seem to have lots of meals
now), your support is essential.
Bye for now with love from both of us,
Dean & Julie.
Here are the links to photos etc. I try to update photos as often as I can, It was done Thursday last week. I have not attached photos this time because it makes the email too big for some servers.

Thomas Brodie Cozens 6/12/07

Hello Everyone,
Thanks for your replies to my last email, my mailing list has now increased a lot, if you are missing out or getting this second hand and would like to receive it directly please let me know. I have updated the online photos today. The link is
Thomas is doing very well this week. He had a Broncogram and another Bronoscopy in theatre yesterday. the report from the previous Broncoscopy showed that Thomas had severe Tracheal Bronco Malacia but the report from yesterday showed no such condition anymore. It was an amazing change, they even had to check that they were looking at the right babys report.
Thomas is still on CPAP but in theatre they experimented to see what sort of pressure Thomas needs. It seems to show very low pressures required, enough for the doctors to question if he needs the CPAP at all.
Thomas still has events where he stops breathing and his heart rate drops and his oxygen levels fall but the doctors think that it is related to the Pulmonary Hypertension rather than his airways collapsing. The cardiac guys have done an Echo Cardiogram this morning as they have been doing every week that we have been here (and sometimes daily) which may show a slight improvement but that is not official until the boss sees the report. Thomas is still on Sildenyfil for the Pulmonary Hypertension.
Thomas has a little infection at present which is being treated with 2 different antibiotics (they are treating his roommate also with the same drugs) the doctors have ordered tests of snot, poo and blood because it is not immediately obvious where the infection is. He had a tiny temperature yesterday for about an hour.
The other stuff that has been happening... I am continuing to express milk in the hope that Thomas will be able to have it after he has his surgery. There is no talk this week of when that surgery might be as the doctors are concentrating on discovering why he stops breathing when he gets upset. I have been able to hold Thomas another 2 times since I last wrote, and Dean has held him as well.
We are coming up for 4 weeks at Ronald McDonald House. We have had some free meals, prepared and served courtesy of AXA Australia, Medibank Private and ANZ Bank, also Carlton Rotary and a lady called Sandra who brought a gang of her friends. Christmas decorations have gone up at Ronald McDonald House and all over the hospital.
Rowan and I have been to the beach, walked around Nth Melbourne, played basketball and gone shopping, we are trying keep active, and I am trying to keep him amused. Rowan is getting a bit impatient with being here, he would rather be in his own home as we all would. Dean is at home with the dogs to keep him company, He is living around our kitchen renovation which included no hot water for a few days, it is sorted out now thankfully. The new kitchen is looking brilliant, thank-you Graham and his mates who are installing it. When I get home one day I will take a picture of it and post it on the Harvey Norman website for you to see.
Finally thank-you everyone for your visits, phone calls, meals, gifts and prayers. All of you who are praying please be encouraged by the good reports we have received this week.
With love from all of us, to all of you,
Julie and Dean.

To Mum 9/12/07

Thanks for your email,

I came home tody for a couple of hours, so I checked my email at yahoo. Can you use the email at optusnet (the one I am using now) next time as that one is so much easier for me to open and stuff. Thanks.

Thomas has had a bit of Diarrhoea so he has had his feed stopped and just fluid for a while to see if that stops it. He is being given anti biotics still for the infection that they cant work out where it's located.
His IV line broke down yesterday and then his new one broke down today so he is probably going to have a surgical line put in because he needs that IV line. He has not got easy veins to pick up.
He looks good even though he has these fevers that come for a couple of hours and go again.
I still havent heard the results from the Echo that was done last week. He was awake for ages last night and Dean and I got to hold him for over an hour. He just looks around and has a bit of a chew on his Replogle tube (thats the suction tube in his mouth).
We went to a BBQ with the people from the Down Syndrome Association and we went to church at Frankston today. It has been a good day and I am enjoying the peacefulness of home. I dont really want to go back but I will soon.
We have to come back tomorrow as I have an appointment at the Gynaecologist. Rowan is going to drop in to his class at school. He starts swimming at North Melbourne tomorrow morning.
Dean took a truck to Sunshine on Friday for Malcolm but it wasnt ready to take back yet. It might be done by the time we have to go tomorrow or he might have to catch the train back another day to get it. The kitchen is halfway in.
I am taking photos to post on the website.
I hope you are finding the website good.
Hope to see you this week.

From Thomas' Mum 28/12/08

Hello everyone,

It has been 2 weeks since I last wrote, I hope you all had a very merry Christmas. School holidays are here and lots of services have closed at the Hospital for the Holidays. The area that the computers are located in the hospital is closed for another 10 days so I am sending this email from home. We came home for the afternoon to do a couple of things and see if the house is still standing.

We have had some very good news. The last Echocardiogram showed that Thomas has nearly normal pressures in the arteries going to his lungs. Praise God that the Pulmonary Hypertension is now under control. All our prayers have been answered. The Sildenafil will still continue for now. Thomas is on a very high dose (about double) but the doctors dont want to drop it just yet. This means that Thomas's heart isn't pushing so hard anymore to get his blood oxygenated.

Thomas is doing well, considering everything that is going on. He is nearly finished his Antibiotics (for the Meningitis), that course is due to end on new years day. The IV line seems to have settled in nicely and is working well. The doctors are still slowly weaning down his morphine, now its down to 0.21, which is only 21% of his dose from last month. Also the pressure on Thomas's CPAP is being weaned down, we are on 7 now, tomorrow they are putting it down to 6.
Thomas seems to have recovered from the Diarrhea, it seems to have been a feed intolerance. We have switched to a different Formula called Alfare. He lost some weight when we switched his feed as the Alfare formula has less calories than Monagen. His weight dropped from 5.31kg to 5.010kg in 6 days! The volume of his feed has now been increased and he is now back to 5.190kg. My milk supply had almost disappeared due to lack of motivation on my behalf. I have been spending the last week carefully encouraging my supply to increase and I am doing really well, I have almost filled a bottle today!

Other things that have happened since I last wrote.... Thomas had a blood transfusion on Friday 14th Dec as his Haemaglobin dropped to 7.7, it came up nicely to 12.6 after thge blood. Often sick babies need to get a transfusion because they are not able to produce enough of their own red blood cells.

We spent Christmas day at the hospital. Santa came in a convoy of 10 Firetrucks, with lights and sirens! No trying to sneak around and get down chimneys. There were lots of volunteers singing and giving gifts, I am told Guy Sebastian was there with Kate Cebrano but we didn't see either of them. Thomas got at least 4 presents and Rowan got lots too. We had lunch at Ronald McDonald House and we are still eating the leftovers. Thanks for your Christmas cards, I got to read them today.

I will sign off there. Dean is finishing work soon and we are heading back to the hospital tonight.

I hope you all have a safe new year,

Lots of love from all of us to all of you,

Julie Dean Rowan and Thomas..

Thomas' New Year 1//1/08

I took this picture last night at about 11.30pm. Its proof that Thomas did get some sleep. Maybe the flash woke him up and its all my fault. His tshirt says "I love my daddy... daddy loves me"

Hello Everyone

Happy New year to you all. I hope you all enjoyed bringing in the New Year and, like us are looking forward to a prosperous 2008.

Rowan and Jamie (Rowans friend) and I went to the Melbourne Observation Deck (Rialto 360deg Skydeck) for a New Year celebration. Courtesy of Ronald McDonald, it was free food and drinks from 6.30 to 10pm. We were able to view the 9.15 fireworks display from 55 floors up. We were a lot higher than the fireworks. It was blowing a gale up there and it was really hot. It was a good New Years Eve to stay indoors. We had the most magnificent view over the city from day through to night. It was a great sunset too. There were Balloon Artists and a Magician with a dove and free pinball games too. We all had lots of fun and were home by 10.30pm.

Thankyou to everyone who has replied to my emails. I am sometimes able to reply but please don't be offended if I can't get back to you. I have limited computer time.

Thomas is going really well, he is looking really healthy and happy. He is awake a lot, in fact his Nurse said he stayed awake all night last night. Consequently he has slept through nappy changes and things today. We bought his little rocking seat into the hospital, he can have it in his bed when he is awake, he sits up in it. He has a whole new view of the world from there. He can see the toys we have put on his bed, its easier for him to see us, and he pays more attention to people now. We even get the occasional smile. A lot of this is because he is not dosed up on Morphine anymore, he is also a lot older, 76 days old today! It is really good after so many days of being so sick that he couldn't move.

The weaning of Thomas's morphine is at 0.08 which is only 8% of the dose he had 5weeks ago. Thomas is going to have a trachy change in the morning, the nursing staff are not taking chances that it will go smoothly. Even though the most recent study showed that he no longer has floppy airways. As of tonight there are no more antibiotics for the Meningitis, Thomas will have a lumbar puncture tomorrow to check that the Menningitis is gone.

Rowan is going to stay with Mum in Corowa tomorrow, for a week. I don't know who will enjoy that more, him or me!

Bye for now,

Lots of love from all of us to all of you

Julie, Dean, Rowan and Thomas.

More about Thomas 13/12/07

Hello Everyone,
It was good to see our church family and catch up with you all when we came to church on Sunday. Also, thanks to Tina who invited us to her home on Sunday for a Barbeque with the families that have children with Down Syndrome. Thomas turned 8 weeks old this week.
Thomas is having an eventful week, the little infection he ad last week has eventuated into Meningitis. Menningitis is an infection in the fluid enclosed between the 2 films (Menninges) that surround the brain. It can be viral or bacterial, Thomas has the bacterial type and will be treated with antibiotics for 2 weeks or more. He also has really bad Diorrhoea at present, which is really like green water.
The doctors were able to get a long IV line into Thomas on Monday so they can run fluids and antibiotics but they are not willing to rely on that remaining functuall for that whole time so they are sending Thomas to theatre for a Broviacc line today they tell me that Surgery will happen at about 4pm. A Broviacc line is surgically inserted into a main artery they will be using the artery in his groin. The end (that the IV lines are connected to) comes out at another site further up his trunk or down his leg. This type of IV line can remain in for months (unless it becomes infected of course). It is the same sort of line that is used for some Leukemia patients.
The samples that they have taken of Thomas' Diorrhoeaa have not grown anything. We still don't know what is causing it. We are now working on the idea that Thomas might have an intolerance to his feed which is Monagenn. He is being changed to Alfaree formula today which is a different composition, it may help stop the Diorrhoeaa. The doctors have tried not feeding Thomas and just giving fluids and they have tried half feeds but the Diorhoeaa just keeps coming back.
The Doctor who I talked to today tells me that the Surgeon wants Thomas to be as well as possible before he operates, at this point the estimation is in 6 weeks time. The Pulmonary
Hypertension is still the main concern and Thomas continues to be treated with Sildenefil. Echo cardiograms are planned 2-3 weekly to check on the progress of his improvement.
Pulmonary Hypertension is high blood pressures in the arteries leading to the lungs. Basically the vessels are constricted (small and tight) when they need to be bigger, relaxed and open. This is the most serious of Thomas' conditions, as it has to be better before he can have surgery.
Thomas is continuing to be weaned off Morphine he is down 50% from the dose he was having
10 or so days ago. The pressure that the CPAP is running at has been dropped, Thomas is coping well with a pressure of 7cm and his oxygen requirement is not much higher than normal room air. These are all really good signs, along with his size, and the fact that he was born full term, bode well for the future. Yesterday Thomas weighed in at 5.18kg which is 11lb 7oz. He has moved back to room 5 although he is in a different bay now. He was moved as a result of a few other babies with changing needs, not because Thomas had an emergency.
Thomas has 2 champion Grandmas as during this past couple of weeks Betty has won the Singles at her Bowls Club for the third year in a row. Margot has won the Veterans Division in her Golf tournament. Congratulations to the Grannies. I hope you have enough room for the trophies. I have updated the pictures on Sunday and I have included a family shots album which has pictures of the kitchen. No progress on the kitchen this week except to say I bought some fairly dreadful light fittings which will have to go back.
Bye from us at the hospital,
Lots of Love too,
Julie Dean Rowan and Thomas
PS: it seems that Rowan might have to start grade 6 in 2008 at North Melbourne Primary after
Link to photos

Re: More About Thomas 14/12/07

Hi Josephine,
Thanks for your reply.
Glad to hear that you and maybe Janine will be coming into the hospital next week. Thomas did have a rough week, he has his Broviac line now, he came back from Theatre at about 6pm last night. He is looking very clean and comfortable this morning. Last night when I saw him he was still covered in Betadine and still had some blood. I am not good with the blood and dressings make me squirm.
I spoke to Dad last night but the phone cut out and he didn't ring back. If I buy a phone card I will be able to call out from my room. I am on the go constantly though and the mobile is really the best because I can answer wherever I am. Its a shame its so expensive.
I don't think that I need anything in particular. There is always the very heavy items that I hate having to lug home on the tram though; longlife milk, fruit & vegetables etc. Its a shame that those things are ones that need replacing the most. I will make a list when I know what day you are coming.
Bye for now, Julie

News From Thomas 15/01/08

Hello Everyone,
I hope you are all well. I am sending this email from the Hospital as the Family Resource Room is now open again. I am trying a different email address because it is easier for me to use when I am at the hospital. You can reply to this one or the other one or both if you like.
Thomas has been busy as usual, since I last wrote. He has been diagnosed with Pneumonia today. It is a Right Upper Lobe collapse, which means Chest infection on his right side. I am told its not a really bad Pneumonia because its just in the one spot. Fortunately Thomas has a trachy so the nurses can suction the goo out of his Trachea that he coughs up out of his lungs. He is better this afternoon than he was this morning or last night. He is back on the Gentamycin & Vancomycin antibiotics as of midnight Sunday, (he had finished them on the 1/1/08 after the Meningitis). It is very easy for Thomas to get a bug because he occasionally has saliva spilling back into his windpipe and lungs, The hardware such as the trachy and the Replogle suction tube are easy pathways for bugs to get in, and Hospitals are bug laden environments even though there is antiseptic hand gel everywhere.
Thomas is Thirteen weeks old tomorrow, or today is his 91st day. The other day when he was upset and wouldn't settle I was checking out his gums for any swelling. I joked with the nurses that we could eventually be here long enough for him to get his first tooth before we get home.
There are quite a few babies here over 100 days old. It has certainly been a long haul and we are likely to be still in hospital for another 6-8 weeks.
A chest infection is a bit of a setback. The good news is that Thomas was able to spend 8 hours off CPAP last week. He had only humidified air coming through his tubes with a bit of additional oxygen. Every other time that he has previously had his air switched off Thomas has panicked and needed to be put straight back on. This time his air pressure was switched to zero and the nurses left his tubing still connected. Maybe it was a placebo effect, because the tubing was still there he wasn't alarmed. We don't really know why he coped this time but not other times, he did really well with his oxygen levels the whole time. He even coped with a sponge bath. He was exhausted afterwards though, all the next day he slept and slept.
Talking about baths, Thomas has had 2 real baths now, he is not too sure if it is a good idea, we make them really quick anyway. It is a real job getting him and all the tubing in the bath, it takes 3 people.
Thomas is now back on breast milk, that started again on 3/01/08, things are going along well there. He is making good headway into the frozen milk because Thomas is having 38ml per hour continuous feeds which ads up to 912ml per day. I am only producing about 300ml a day at present. There is still a lot of frozen milk.
Other stuff that happened since I last wrote. Thomas had a seizure on 3/01/08. It only lasted about 25mins as the medicine he was given settled him quite quickly. He had an EEG afterwards and then another one the next day, there was no further abnormal activity. The Doctors say that they would only investigate further if he had more seizures, which he hasn't had any so far. Also Thomas weighs 5.14kg, it has been fluctuating up and down for example he was 5kg 7 weeks ago and he was 5.3kg 4 weeks ago. He started big and grew quickly but now he has slowed down, his head is growing, its now 37cm.
We have been seeing a Music Therapist at the hospital whose name is Helen. Thomas really likes her and she has bought lots of new CD's, she sings little songs to him, and she has been very encouraging of us to read and sing to him as well. She even bought him a pair of headphones so that he can listen without disturbing others if need be. I think his room is much nicer with the music playing and I put it on all the time. His old favourites are Geoff playing Sues Southwind music and Cello Lullabies, we have now moved into Baroque Guitar, Oboe and Flute. There is a Handel piece that I think sounds heaps like "Michael Row The Boat Ashore".
The eagerly awaited arrival of Baby Ella and Baby Isabella happened early in the new year, a new cousin and a new friend for Thomas. Congratulations to Amy and Drew with the birth of Ella on the 4th of Jan. Congratulations to Kay and Matt with the birth of Isabella on the 2nd of Jan. I hope you are all enjoying your babies.
I haven't updated the pictures on the Internet since New Years day, the link to the website is will post some more pictures soon.
Thanks everyone for your replies to my emails, phone calls and birthday cards. Thanks to Nina (Janine) who came and did a wonderful colour for me yesterday. Thank you I feel much better. Thanks to Dad for bringing her too.
Lots of love from all of us to all of you,
Julie, Dean, Rowan and Thomas

Re; News from Thomas 18/01/08

Hello Josephine,

Thanks for your message. We have good news, The Pneumonia has cleared, his chest X-ray shows no shadow on his lung anymore.
And, the Surgeon has returned from leave so we are now booked to have Thomas's Oesaphagus repaired on the 29th Jan. The booking of course depends on emergencies and whether they can fit him in but that is the plan.
We are still trying to work out how to manage his airways. He needs to have air under pressure but we are trying out a cycle where he has 1 hour off CPAP and 3 hours on. The idea is that he will get more and more used to not having the air under pressure and he will be able to go without it soon.
Also the doctors have realised that he is not growing so they have started fortifing his feeds. The frozen breastmilk will have run out after the weekend, I don't know what I am going to do then. I am not making enough milk to feed him. He is also being weaned off continuous feeds to bolus feeds to teach his digestive system to cope with a whole meal at once, of course it will be done very slowly.

Copy of email I sent to Josephine 25/01/08

Hi Mum,
Further to the email that I sent Josephine (see below). I have been at the Family Court the last 2 days in a row and I now have a hearing listed for Thursday 31st January. I am making an application for the Federal Police to retrieve Rowan, unless he is returned before then.
He has taken Rowan to Queensland for a holiday, he has not taken his wife with them, she told his solicitor that they will be back on Sunday. It worries me to hear that he has taken Rowan to Queensland as I know that he has a brother living in Maroochydore and I worry that he will take him there to keep Rowan away from me.
A Duty Solicitor at the Family Court called his Solicitor this morning and informed him of my intention to file for a hearing. The solicitor tried to contact him and advise him but he was not answering his Mobile Phone. I have faxed the court documents to him this afternoon. This is very stressful.
Thomas is having a bad day today. He woke up because he was de-saturating and he was very upset. They weren't able to calm him and he had a fairly major event and he had to have sedation. he then had a temperature for about an hour and a half. his pulse was racing too. They took a chest x-ray and swabs of his trachy, and samples of his secretions to see if they could find any bugs. he is cool now and his Pulse is restful and his breathing is calm too. He is even a bit cool. It was scary for a while and I only arrived about half an hour after it started. He was so hot, I stripped his clothes off and took away extra blankets and put a cool cloth on his forehead. I know they are only simple things but I couldn't understand why the nurse hadn't already done that. I suppose she was busy with suction and extra oxygen etc etc.
Anyway it has been a stressy day and I have just about had as much stress as I can take. Good part was that Betty came to visit and she got to have a cuddle of Thomas before all that happened. I hope that he doesn't have any sickness because that will delay surgery.
Sorry I sound not very friendly.
See you soon,

Thomas' Surgery is Tomorrow 28/01/08

Hello Everyone,
We have good news, Thomas is booked to have his Oesaphagus repaired (joined to his stomach) on Tuesday 29th Jan.
The booking of course depends on emergencies and whether they can fit him in but that is the plan. The Pneumonia cleared in 3 days so that was really good.
Yesterday Thomas' Broviac line had to be removed. It broke down Friday/Saturday and a contrast study that was done Sunday morning showed that it may have been fractured and was leaking into his tissues. Thomas had blood taken on Friday after he had a really high temperature of 38.9, the results of that test showed an infection which the Doctors were trying to manage with antibiotics. Saturday some swelling came up in his abdomen and Thomas had pain and he needed Panadol.
Panadol is a fabulous pain killer for babies its really effective. I would not have thought so, even though I have always given it to all my babies, when they are hooked up to all the Heart rate and respitory rate monitors and having their pain monitored constantly you can really see the effect. Its much more effective than on adults. Thomas had sedation yesterday so he slept all day until very late last night.
We were concerned that Thomas' surgery will have to be delayed because of the infection. He is still having antibiotics and the Surgeon Russell Taylor says that he will still plan to go ahead on Tuesday.
He will put another Broviac line in when Thomas is in surgery. In the meantime Thomas now has an IV line in his foot. The Broviac line is the white on that you can see in the pictures. It goes in just below his belly button under the skin and it enters the Femoral artery in his groin, it is used to deliver drugs into a large vessel. This is because babies have tiny veins that can be damaged by intravenous drugs so they need to be administered into large vessels.
We were trying to work out how to manage his airways by trying out a cycle where he Thomas had 1 hour off CPAP and 3 hours on. The idea was that he will get more and more used to not having the air under pressure and he will be able to go without it soon, it wasn't working very well. Thomas was getting a bit upset or stressed. The Doctors decided that we would stop trying to cycle his CPAP on and off. The reason being to give Thomas the best chance to be in peak condition ready for his surgery on Tuesday.
Thomas is now having fortified feeds, which means that he is having extra formula added to his milk so that he would gain weight. It seems to be working well, he has gained weight. The last weigh in was on Wednesday at 4.480kg. The frozen breastmilk has run out so he is having some Alfare formula as well as the milk that I am producing, I am making about 300mls of milk a day which isnt enough to feed him. He is having a total of about a litre of milk a day or 41mls per hour. He is having bolus feeds now so he will have 41mls in half and hour and then nothing for half an hour. This method is preparing his stomach to accept a whole feed at once instead of his milk being dribbled in continuously.
Thomas Turned 100 on Thursday. Days that is. He got a certificate and lots of attention, He spent lots of the afternoon on the floor in his rocking chair as you can see in the picture. He had a really good few days before all the stuff happened with the Broviac line. Deans Mum, Betty came to visit on Friday and she got to have a cuddle with him.
Rowan has been at his Fathers house the last 2 weeks but school is starting this week so he will be coming back. I'll write and let you know how the surgery went. To our army of prayers, please keep us in prayer at this time. Thank you and bless you all.Lots of love to all of you from all of us
Julie, Dean, Rowan & Thomas
Sorry, ran out of time to attach pictures, they are on the web though
please see the link at

Thomas' Surgery is on Hold 29/01/08

Hello Everyone,
Thomas is not going to have his Oesophagus repaired today. The Surgeons didn't want to repair Thomas' Oesophagus today because he has developed another chest infection. I found out about the chest infection after I sent the email yesterday. The Family Resource room with the computers that I use to send emails was closed yesterday so I couldn't get back online to let you all know. (Yesterday morning I sent the email from a computer at Ronald McDonald House, it is owned by one of the parents who has a remote broadband connection.)
He is in Surgery now though. After the Broviac line broke down over the weekend it has become urgent that Thomas gets a new one. That's what is happening today, so that Thomas has a reliable central line for the drugs that he needs. Its used for infection control (antibiotics). To put in the new Broviac, Thomas only has to be in a light sleep. The surgeon who came to get Thomas said that he will be back in about 1 hour. That is about 11.15am.
Thomas has a all of his regular medicine straight into his stomach via his feed line (called a Peg).
Thank you to everyone who has held us in prayer, thanks for the support and encouragement. We really appreciate it. Thanks for all the replies that I received yesterday too.
All our love to all of you
Julie, Dean, Rowan and Thomas
I have attached the pictures that I intended the other day.
The internet is updated too.

No Surgery at all Today 29/01/08

Hello everyone,
There was no surgery today for a new Broviac line because Thomas was too upset.
They will try again tomorrow and maybe sedate him before they take him to theatre. That way he will be nice and quiet.
Today his heart was racing and he had a dirty nappy and he was crying, he was just not up to it.
Update again tomorrow if he goes in.
Thanks for all your replies I will get back to you later. I am going to go and give him a bath and a cuddle now.

Re: No Surgery at all Today 30/01/08

Hi Josephine,
Thomas had a much better day today, lots of sleeping but no Surgery.
Regards Thomas' Oesophagus repair; the latest from the Rounds this evening is, the Doctors have cleared the Surgeon to find a place on his list from Monday provided we have a clear chest x-ray. So it could be really soon.
The surgeon will put a new Broviac line in when he does the Oesophagus repair. The current course of Antibiotics will finish on Saturday so we are hoping to get through untill then on IV lines. We are onto the second one already.
Family court tomorrow.
I hope to be spending some time at home this weekend. See you later
Julie Cozens

Thomas Had Surgery Yesterday 13/02/08

Hello Everyone,
Its just a short email from me today. Thomas had his Oesophagus joined to his stomach yesterday. Hooray! He did not have a Hypertensive crisis which was the reason that surgery was stopped when he was first born.
He is well and there were no problems today
He was only the second patient in surgery yesterday so he was in at about 10.30 and back at about 1pm. We weren't able to see him until about 3pm. The Nurses and Doctors are all saying that he is very good. He has lots of lines and tubes just like when he was first here. He is a lot more stable now than he was then. He hasn't opened his eyes yet and he is fairly puffy in the face and neck. He is on a ventilator, he is on Morphine and Midazolam and antibiotics as well. He stirs when the nurses give his mouth and nose some suction. He has just had a little wash and his sheets changed so that has made him feel a bit better but made him very tired. He is sleeping now.
I feel as though I have been holding my breath for weeks and now I can relax. Thank you everyone who has been praying.
Lots of love to all of you from all of us,
Julie, Dean, Rowan and Thomas

Thomas turned 4 months old 22/02/08

Hello Everybody,
Thomas is now 4 months old as of Sunday 17th Feb.
Boy it has been a long haul. He has been in intensive care for 4 months+.
I am sorry that it has been a while since my last email. I just couldn't face it.
He is not very well at the time I am writing this email. I have just come from his bedside and he was just given an extra dose of intravenous Morphine to help him calm down. The story goes....
Thomas loses control of his airways and it sends him into a bit of a crisis. The reasons he loses control of his airways are varied, it can be because some spit or secretions were blocking his trachy tube or sometimes he has pain, usually from wind or from passing a motion, sometimes he just doesn't like to be handled. Then his Pulmonary Pressures shoot up and make it very hard for his blood to move through his lungs and get oxygenated. He turns blue and has to be given higher pressures on the respirator and extra oxygen. There are all sorts of dials on the respirator which the doctors change constantly during these events, altering the PIP, PEEP, Rate, Flow and alarms on things like Tidal Volumes etc. It is very technical, they are very calm, it is nothing like those television shows where everyone is shouting and running everywhere.
It is very hard to watch as he is very distressed.
Yesterday we had a meeting with the doctors who told us that they were organising a Bronchoscope to see if there was a reason that Thomas' breathing was so difficult. It was done at about midday and I was actually present because they did the 'scope at Thomas' bed. I saw pictures of his trachea on the television screen. There were 3 lumps that were closing together when he breathed out which was making it very hard for him to breathe in again. The answer was to make a Trachy with a longer pipe that went past the lumps so that his trachea wouldn't be obstructed. After 2 goes the new Trachy is in. They had to do scopes each time to check that the length is right, the first time it was too long at 9.5cm and had to go back to the orthotic department to be made a bit shorter. The new trachy is 8cm long and the standard ones are only 6cm.
There have been 2 more crisises since then. The new trachy hasn't been the total answer.
The most recent Pulmonary Hypertensive Crisis started at about 4.20pm when he started to do a poo, then he began to relax at about 5.15pm when he was given some extra Morphine. Morphine is good for this because it helps his arteries relax. Thomas is having regular oral Morphine and Diazapam and Chloral to keep him relaxed and pain free but sometimes he needs a bit extra, like this afternoon.He has had a chest x-ray just now to see if there is anything in his chest that is a problem, he has a bit of redness around his gastrostomy site that has not improved for 24hrs. The doctors have ordered antibiotics for that. We are also concerned that he hasn't had a good poo for a while so he is getting some Coloxl drops to help with a little bit of constipation that can be seen on the x-ray. Also Thomas seems to have gained quite a bit of weight since his operation. He gained about 1.05kg in 10 days. He is a bit puffy after the surgery and there is some constipation but it does seem like a lot of weight to gain to me.
The surgery went really well. He has been swallowing most of his saliva and he has been keeping all of his milk down. The join was easy and the surgeons were thrilled that Thomas was back to being fed hourly within 5 days. The wound has healed nicely and there is very little bruising or swelling. Everyone is very happy about that.
It is very hard to sound positive about much of this. We are all doing our best to cope. Thankyou for your prayers.
Love to all of you from all of us,
Julie, Dean, Rowan and Thomas

Prophetic Vision from a Man (Fully Grown now) who also had Osophageal Atresia at Birth 15/02/07

Hi Julie,
It's great to hear that Thomas is doing well. God is very good!
I just wanted to let you know that I saw a very interesting vision on Tuesday night, which I think was the night after Thomas had his surgery. I wrote it all out just after I saw it...
Tues 12/2/08I was lying in bed imagining a war scape, and hearing the sound of distant fighting. There were burning cities on the horizon and gun shots echoed all around. Long shallow trenches ran like a grid through a wide open plain which had become a wasteland of mud and dirt.
It was not safe to come up out of the trenches, because the enemy could be anywhere. All of a sudden I saw a little baby crawling about above the trenches and I realised it was Thomas.
Immediately a huge angel swooped down from heaven and carried Thomas up into the air. I heard God say "I'm bringing Thomas out of there now" (or something very similar). As the angel rose up into heaven I saw that it wrapped Thomas in two wings and flew with another two. I thought the angel was probably a seraphim but I don’t know. It was very tall and athletic with great white wings. Rising through the clouds above I saw a throne and the angel took Thomas to Jesus, the King of Kings who was seated on the throne and I knew that he was letting Thomas see many things from His throne as if it were from the top of a mountain.
It was a privilege especially for him, because Daddy just wanted to show this to him so much, but God also had a plan in doing this. God’s presence on the throne was like a cloud with much light shining out of it and in many colours. When Thomas looked out from the throne he looked through this misty haze of God’s presence and saw all things as God sees them. He understood secrets that are hidden to many others (because they see only what natural light shows them).
Then I saw an altar before the throne, made out of pure white stone and I knew that Thomas was to be a priest before the Lord. Then I saw spreading out from the altar, an auditorium filled with rows of seats made out of the same white stone. I knew that Thomas would not only be a priest before God but also before men.
The last thing I saw was a great library filled with shelves and shelves of books. The books were never too high to reach and the library spread out to fill a very large room located below the auditorium with the altar and the seats.
I think the shelves were made of that same white stone here too. I knew that the citizens of Heaven were given free access to this library and all that was in it. I felt that this library would be significant for Thomas and that he would also have free access to it.
That is as much as I could remember, so I hope it encourages you guys and Thomas!
Peace & Love to the whole family
Tim Ninnis

Thomas Today 28/02/08

Hello Everyone,
I have attached a picture of Thomas. I took it yesterday. He is a beautiful baby.
Today, Thomas has a busy day so this will be a short email from me. He has been to Theatre for another Broncogram and he is having an Echo and a Ultrasound too. The doctors are looking for a reason for his respiratory events that have been happening.
Lots has happened since I last wrote but there has been very little change. Most significantly was Thomas had a custom made trachy fitted. It was made a little longer to bypass some cysts in his trachea as I said in my last email. He had another one made that was a little wider as well. Now there is no air leaking around the sides like before. It has helped with keeping him stable but hasn't been the answer yet.
There have been x-rays and ultrasounds and blood tests. He is still on a sedative dose of Morphine, Diazepam and Chloryl, now they have added Midazolam and the occasional dose of Fentonal. He is also on Anti biotics for a rash that appeared around his gastrostomy site.
The stress is not any less yet.
Thomas is a brave fighter and God is the God of the eleventh hour.
We have hope and faith.
Love to all of you from all of us
Julie Dean Rowan and Thomas

Thomas' Last Day 1/03/08

Hello Everyone,
This is a very sad email to you all. I am broken hearted to tell you that Thomas passed away on Friday evening at about 6.45pm.
I am so sorry to give you this news. I am so sorry that a lot of you will be reading this at the start of your working week. I am crying too.
Thomas passed away in his Daddy's arms, with me and Rowan and Pippa his nurse. We were outside on a balcony on the third floor. We had lots of cuddles with him before he passed. He had his eyes open and was looking around, he smiled, he knew that he was somewhere different. There were no beeping machines or people he didn't know nearby. We had photos. Dean played him some songs on the guitar that he composed. We were able to spend some time afterwards with him having more cuddles and I bathed him. When we left Thomas, he was in his bed cuddled up in a lovely blanket that his Mama made him and he had all of his teddy friends with him.
The Doctors told us that the results of the bronchogram that Thomas had yesterday were extremely bad and that he would probably pass away very soon. Much higher pressures were required to keep his airways open than he had been needing last week and that was higher than the week before and this had been a trend for about the last 6-7 weeks. He was requiring more and more medical intervention to help him overcome the hypertensive crisis' when they occurred and they were occurring much more frequently. Yesterday when he was in Theatre for the bronchogram he had to be given a dose of adrenaline to help his heart after a severe hypertensive event. That's when the line was drawn. It was no longer active treatment in Thomas' best interest. Given the results of that bronchogram, any further medical procedures were not fair to him.
We were privileged to be offered the opportunity to be prepared for his passing rather than it happening in an emergency medical situation. I am so thankful for that. Thomas was in no pain, he was not distressed at all. He just went. He went home to Jesus.
Much love to you all from all of us
Julie, Dean, Rowan and Thomas
ps: I have updated the pictures on the internet here is the link

Re: Thomas' Last Day

Thanks for your support and sympathy especially over the weekend.
Thomas is our beautiful baby, we are heartbroken that he died. Staying connected to everyone was one of the things that sustained us, thank-you for your part in that. Just knowing we were supported by friends and family and even people we have never met, that there were people who waited for our news and looked at Thomas' pictures, that their lives were impacted by our news was really a special experience. I wonder how many lives Thomas has touched. I don't think I will ever know.
We have some arrangements to make today and we will pass on the details when they are set in place. There is a notice in todays Herald Sun, there will be another one published soon. We will need support for a while in this grieving process.
Love to you all, from all of us,
Julie Dean Rowan and Thomas

Thanksgiving for Thomas

Hello everyone,
Thank you all for your messages of condolence, support and sympathy. Gods miracle was Thomas. He touched so many lives, how many we will never know. When he went, peace descended.
I have replied to mostly all our friends and family by now. I ask that you please be patient with me if I haven't reached you yet.
We have arranged Thomas' Thanksgiving Service and Burial, to be on Friday 7th March at Bunurong Memorial Park at 790 Frankston Dandenong Road, Dandenong South, the time is 3.30pm. There is a notice in the Herald Sun on Wednesday from the Funeral Directors who are Kingston Funeral Services Cheltenham.
We have asked that instead of buying a floral tribute for Thomas that you would consider making a donation to Down Syndrome Victoria. The staff at Down Syndrome Victoria have been wonderful. They have supported me immensely, helped me come to terms with having a baby with Down Syndrome, showed me that it is a life of promise and fulfilment and they have also stood with me through the grief and pain of Thomas' time in hospital. I could not have had more professional and empathetic care. A donation would be a way to continue that good work that only they are doing. We will have some envelopes.
Please don't feel that you will have to leave your babies and children at home. We will love to see you all if you feel it is appropriate in your situation.
As always, Love to all of you from all of us
Julie, Dean, Rowan and Thomas

Re: How are you doing?

Hello Jay,
Thanks for your message. I have faith that Thomas is in Heaven and is blissfully happy there. When he passed away I know he went home to Jesus. The peace that fell on us when he left was huge, it was like a happy departing, like it was the right thing. I know that Thomas is in a place where he isn't held back by his body anymore. I know that he has angels caring for him in a place where there is no pain, suffering, grief, anger, fear, disappointment, despair, disease, death, sickness, sadness, confusion, rejection or anxiety. That gives me joy.
Even though I am very sad, it is only a sadness for me and Dean and my family. I am sad that my beautiful Thomas' life never got the right start but it is me and mine that have missed out on having him with us during our lives. He is in the eternal place and I will see him there.
There is a poem that I found on the Internet called "Welcome to Holland" it describes how I felt about becoming a parent to a child with Down syndrome. Now that he has died, I feel like I have been sent back to Australia, but what I would dearly love to do, is get back to Holland.
Here it is.

Welcome to Holland

by Emily Perl Kingsley
©©1987 by Emily Perl Kingsley.
All rights reserved
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian.
It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland""Holland?" you say"What do you mean Holland??
I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills.... and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned.
"And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.