Reflections

Teddy's due date was in the middle of October. It was a difficult time for us. We really wanted Teddy around.

I think it is important that we share a few of our thoughts with people. This is because, some people think that we should have moved on in our grief. Also, some people are still putting their foot in their mouth when it comes to giving what they think is sympathy.

But we are not judging anyone. And that's what I want to talk about. As a 'bloke' I honestly thought that losing a really small child would not hurt the way it did; that it would not change my world. However, losing a baby, no matter how small, devastates a person. Everything has changed. Please understand that. And I'm sorry to those who have lost children, to whom I wasn't more understanding, before I knew what I now know.

The other thing I wanted to say is that Lil because she bore Teddy, does have a special relationship to him; but please never say, "oh, it must be harder for Lil". This feels like a punch in my guts. I could think of some metaphors to put beside this situation, but I think it is clear enough. Focusing on Lil's pain, does not take away any of my pain.

Also, we don't want people to tell us to cheer up. We want people to say, you are hurting. That sucks. If not to hurt with us, to at least let us hurt.

The other strange phenomenon that I want to share is that I have experienced great joy, and great sadness, all at the same time. It confuses me. I actually feel happy and sad, together. It is like water and oil becoming one substance. I don't know what to do with this feeling, but I wanted to share it with you. I think it may hold some sort of usefulness for how to deal with people who are hurting.

Soon, we will share about when and where we buried Teddy's ashes.

till then,

We continue to thank you for all your love and prayers

Goodbye Teddy

Monday was a difficult yet special day for the family. Thank you to everyone who came to farewell Teddy or was there with us in spirit. We all did manage to smile amidst the tears, as we dreamed of the hope to come. Thank you everyone who donated to Reah or to New Born care.

We managed to hold things together for the farewell but were hit pretty hard when we went home. The emptiness and pain sneaks up on us. We definitely need some time to heal. It is so strange thinking that Lil should still be pregnant and that Edward shouldn't have been born until October. Mikey's birthday, 18th October, will always be memorable because that was Teddy's due date.

To help with the healing process we are being sent on a holiday for two weeks and then will be back to work out what is next. We definitely need prayers for wisdom as to how to proceed with our journey next year.

Thank you all again for love, prayers, wisdom, hugs, positive vibes, soft words, flowers, gifts and support.

The slideshow has been posted on the farewell page.

Mikey has posted his eulogy and message on a page for those who have asked for it.

With love and prayers,

Mikey, Lil and Raphael

Seeya Teddy, we really miss you.

Train to Macquarie Park Cemetery and Crematorium

Info for how to get to Macquarie Park Cemetery and Crematorium can be found at their website maccem.com.au

Please note that if you are catching the train then it is best to get off at North Ryde station.

Teddy's farewell service: Monday 2nd August

Teddy's farewell service

Teddy's farewell service will be at 10am on Monday 2nd August. A month after he popped into this world. The service will be held at Macquarie Park Cemetery and Crematorium.
http://www.maccem.com.au/
The service will be held in Magnolia Chapel with refreshments served afterwards in the Terrace Room.

Children are more than welcome. We would request that you do not dress solemnly. We would also like to remind people that an option other than flowers is to donate to Reah at http://www.nkprojects.org/children-of-north-korea.

Teddy's farewell

Dear friends. Teddy has gone from this earth. Just after 12pm on Saturday he took his last breath. We really appreciate all the support from everyone. It has helped us get through this time. We really can't believe he has gone. We wish he was still here.

Teddy's farewell service will probably be Monday 2nd August, sometime through the morning. We are looking to have it at Macquarie Park. We will put up the exact times when we have them.

If you want to come to the service we would ask that you dress celebratory rather than solemnly. Also, we love and appreciate the flowers we have received but now we would ask people to consider donating to Reah at http://www.nkprojects.org/children-of-north-korea if you want an option other than flowers. This organisation is very close to our hearts.

With love, prayers and tears
Rejoicing in God's love
Mikey, Lil and Raphael

Teddy's last hours

Teddy has been in a rush from the very beginning. Now he is going to beat us to heaven. We are looking forward to seeing him again one day but we are really sad to see him go.
On friday, Teddy's third week birthday, we had a meeting with two of the doctors. They told us that keeping Teddy alive was no longer our decision. Abscesses had formed in his brain and none of the drugs were having any effect on him. Even now we keep asking if there is anyway for him to stay but the doctors are saying no.
Teddy looks so calm and beautiful, it is really hard to come to terms with what is happening to him. Sometime Saturday morning, Teddy's ventilator will be turned off and we will hold him as he heads off on his new adventure. We will miss him so much. We thank God for these precious three weeks and are jealous of little Teddy escaping this hard life, getting to heaven before us. Our tears are definitely for ourselves.

Prayer Meeting for Tiny Teddy. 6pm Mc Cafe. Missenden Road, Camperdown.

6-7pm Tonight. Thursday 22nd July.
Mc Cafe, Missenden Road. (Just near RPAH)

Just come if you are in the area. There is not much room, but we'll stand outside in the cold if we need to.

Don't feel obliged to come in person.
We really appreciate all your love and prayers.
xo Mikey, Lil, Raph and Teddy

PS: Sorry if you get this after the event. I don't feel like ringing and texting everyone.

Update: 22nd July PLEASE PRAY

I was hoping to tell everyone the good news that yesterday, Wednesday, Teddy had turned the corner. Things were looking up. However, now Teddy is in a critical condition. He has candida meningitis and an extremely high risk of very severe disability if he does indeed survive.
The doctors recommended ceasing care but we are being quite stubborn and asking for him to be given at least a few more days to see how he goes. So please pray. God is good either way, but we would love for little Teddy to stay.

Update: Tuesday 20th July

Teddy is still very sick and he could go either way, but the nurses are a little happier with his condition. They are just hoping that nothing else goes too wrong.

Poor Teddy was subjected to a lot today. He had an X-ray that showed that his right lung had gone back to normal after a collapse yesterday. He also had a cannula inserted in his head. This means there is a tube coming out of a vein in his head so they can take blood from him. All his arms and legs either have lines in them already or have been poked too many times. Teddy also had a lumber puncture(?) and some urine syringed from his bladder for tests. The rash is still fiery and Teddy needs morphine to settle him.

The good news is that he is attempting to slurp a mil of milk every four hours again. When we left the hospital tonight, he looked peaceful. Let's hope he has a good night.

PS: A page for photos has been added to this blog. Click on the photo tab just under the heading.

Update: Monday 19th July

We got a phone call at 2am in the morning along the lines of "Hi, we think you should come in to the hospital. Drive safely". We knew the doctors were not calling us in because Teddy had learnt to juggle or was able to write his name.

We were terrified as we drove to the hospital. Edward had become very sick and was fighting a few different infections. He has lived to fight another day but his condition is not much better. He has a rash and continues to have problems with his blood. After a few days of optimism we have gone back to having that dull dread hanging over us. This is another reminder that we are on a roller coaster and life is so fragile.

Update: Sunday 18th July

Edwards's last few days of stability has come to an end. He had been breathing well by himself, but was tiring out so they needed to put the tube back in today to do the breathing for him. They send the parents out of the room while they put the tube in, as it can be traumatic. I can only imagine what it must be like for the little guy.

He is on two lots of antibiotics for an infection and a possible fungal skin problem. His third blood transfusion went well today but he has some problem with his blood and needs a few things to fix it up. He also needed to stop drinking milk for a bit because of something funny with his stomach.

It really does feel like two days forward and one day back. Let's pray he bounces back from these latest complications.

Update: Friday 16th July

Left the hospital at about 10:20pm. Teddy had gone back to breathing for himself, which was good. He has also gone up to 2ml of milk every hour. Hopefully this will continue to increase. Teddy was looking a little pale tonight, so they may need to give him his 3rd blood transfusion. It would be great if he didn't need one.

Last night, we got to stick a photo of our family above Edward's cubbyhouse. Edward saw it and became quite excited. The monitor showed that his heartrate did indeed jump up. We hope it was good excitement and not stress. The cute thing was that Teddy was asleep within a minute of seeing the photo. It is great watching him fall asleep. Sleep is the best thing for him at this moment.

Update: Wednesday 14th July

Just a short entry tonight.

Edward has been stable the past few days with only the occasional niggle. The main concern is his breathing. When Lil and I were at the hospital tonight they had to put the tube back in to breathe for him. He had been going so well breathing by himself but then started getting tired and stopping breathing. Pray that he is able to go back to breathing for himself as soon as possible. Otherwise there can be complications.

Thanks again for all love, prayers and messages. Stay tuned... Same Teddy Time, Same Teddy Channel... Ready Teddy Go!!!!

Update: Monday 12th July

Teddy enjoyed opening his eyes late on Saturday afternoon. He peeped through. He has been experimenting ever since and today had them wide open. The doctor said that his eyes even followed our voices which we found amazing. Lil got a special treat yesterday when three of the nurses were able to pry Teddy from his cubbyhouse and let Lil hold him for almost half an hour.

There have been a few niggly things but once again the nurses have been fixing him up quick smart. Teddy has his own nurse monitoring him constantly. There are about nine different nurses on rotation. When we visit, whoever is on always bring us up to date. We are impressed with the nurses and especially how they look after us as a family. Raph got to meet his little brother on Sunday and was very impressed. We wonder what is going on in his head

Teddy needs the tube removed from his belly button soon. Before this is done, he first needs another line inserted into one of his arms. They tried today but his vein was too small and the tube went straight through it. The doctor is going to try again tomorrow. Pray that this works.

.

Update: Saturday 10th July

Yesterday, Friday 9th July, was Edward's 1 week birthday. We feel very blessed that he has graced us with his presence for such a long time. At the moment his condition is stable but that is only because the doctors and nurses have been fixing things that constantly happen.

Troubleshooting
In the last week, Edward has needed two rounds of Antibiotics, two blood transfusions, some caffeine, some morphine, increased sodium, some insulin to lower his glucose, controlled temperature and assistance with breathing. There have been other little things too.

As Lil has commented, it looks like one big troubleshoot. Something is constantly happening and the doctors are constantly fixing up Edward. Let's hope that Edward keeps bouncing back from each little setback.

Keep praying.

Recap: The emotional roller coast with the miracle twist (warning: maybe too much info for some)

Lil went into hospital on Monday with some concerns but was sent home as everything appeared normal. Lil was still worried on Tuesday and went in to hospital again. The doctors thought she was fine but did an ultrasound and saw that her cervix had already opened 3cm. Thinking that the baby was only 22 weeks old meant that Lil would probably need an operation to keep the cervix closed.

Over the next 24 hours the doctors decided that the operation was not a good idea and it looked like Lil was going to give birth to a 22 week old baby that had no chance of surviving. We had to come to terms with that. A few hours later the doctors were checking a second ultrasound that Lil had had and it appeared that the baby was not 22 weeks old but 24 weeks old. This allowed us to request that everything be done for the baby to keep it alive. However, we were reminded that anything could happen.

On Wednesday night, another ultrasound showed that the baby had already started trying to escape from Lil, legs first. The doctor immediately called for a Caesarean , but after an intense discussion it was decided by all that we would just wait for the baby to come out naturally as Lil's waters hadn't broken yet and every hour inside Lil was beneficial for Edward. Wednesday and Thursday night passed, despite Lil starting the evening with strong contractions. These two nights allowed Lil to be injected with some things that would aid the baby's development in case he came early.

By Friday we thought we may have a few more days with Edward inside, but he busted out at 3:35pm, feet first. Two doctors and two neonatal nurses attended to Edward and kept him alive and Lil had a few people attending to her too. It was a very emotional moment as we only caught glimpses of Edward as he was wheeled away. Then we were told that the first two days out are usually very positive which was the case. Edward looked quite robust and strong. But now the fight is on. Edward looks very skinny and there is always something that he has to battle but he is holding on. What an amazing journey, very up and down.

Edward "Teddy" Paul Bayliss burst into the world 16 weeks early on Friday 2nd July. We really hope he sticks around. It is all a bit scary and emotional, but we are trusting God whatever happens.