Day Fifty Two - The End

My name is Ryan Jaydon Gordon and today Jesus came to fetch me while I was in my mom's arms. I breathed on my own for an hour before He took my hand and led me away. Mom and dad were both there and I know how much they love me; I just hope they know how much I love them.

Today was the first time I ever wore clothes. My aunty Shan and uncle Bjorn bought me a Winnie-the-pooh and Tigger babygro - it was so soft and made me feel really warm.

Mom is smiling in this picture because I looked so cute and because she loves me so much. I was awake for most of the day before my tubes came out.

Dad loves me too...he spent the whole night with me in the cubicle room and slept in a chair next to my cot. I did wake him up a few times when my heart rate went too high.

Mom slept at the Ronald McDonald House in the "Folly Bridge" room with Naomi, Noah, Rene and Travis. My little big sister, Naomi slept next to mom. I got my turn later when the oscillator was switched off.

It was a busy day today because I had so many visitors. First there was mom and dad with my brothers and sisters; then aunty Shan (uncle Bjorn had to go to work); then granny Tehillah and grandpa John; then aunty Laura and uncle Garreth with my cousins...and then finally grandpa Michael, who drove all the way from Wales this morning. Phew, I guess I really am loved and will be missed. I just hope everyone remembers that Jesus is taking good care of me until they see me again in heaven!

Day Forty Eight

My soul, wait thou only upon God; for my expectation is from him.Psalm 62:5

Day Forty Seven

Today was father's day and of course dad came to visit me. Well, mom and dad both stayed the night at the hospital and had a nice lie-in then came to visit me in the morning before church.

The last few days have been hard because my blood pressure has dropped and the doctors have been giving me extra fluid to help. I really don't like that because I get puffy and can't open my eyes.

One good thing is that they have started to give me milk again and are also giving me less medicine to make me sleepy. Hopefully Jesus will help me to open my eyes again soon, it is really hard for mom and dad when I am all puffy.

The nurses wrote a card for dad and put my heal prints on it...dad was very happy.

Day Forty Three

It's been good few days for me, and for everyone who loves me I guess; my CO2 levels have been much better and today the nurses even reduced my oxygen pressure from 30 to 26. The target they say is 12 and then I should be able to breathe on my own. Woohoo, what a day that will be! They also reduced my breathing rate from 70 to 40, which feels alot better. I need to get it down to 20. Still lots for me to do but with all the people asking Jesus to heal me, I am sure He already has. We just need to be patient and watch my body get stronger.

Mom and dad had another meeting today, with a doctor from SCBU called Dr. Ives and one from PICU called Dr. Scheffler; and of course my day nurse, Kirsty. They were in the meeting room for ages but when they came out mom and dad were smiling and laughing. Then they started talking about what the doctors said and it didn't sound very good to me. I guess they were smiling because they know that Jesus loves me and no matter how bad things get, He can heal me. I hope that is what His plan is...I will be the first to know if it isn't, but that is ok too.

Day Thirty Nine

Granny came to visit me at one o'clock in the morning after finishing her work. I love granny's visits, she really makes me feel happy when she laughs. My older brother Noah says he often goes to granny's house and sleeps in a big bed next door to granny's room. I hope I get to do that one day soon.

I woke up later in the morning after having my nappy changed by my nurse, Alison. She is very kind to me and even lets mom play my favourite music. Dad was here when I woke up; he sang me some songs and read me something out of Jesus' book. But this morning I felt very bad and the doctors were talking a lot about something called see-oh-two which has something to do with my blood. They were very serious about it.

When mom and dad were with me later in the morning, doctor Josep said that I had come to the end of the road; which is strange as didn't even know I was going somewhere. He asked them to think about calling it a day, whatever that means. All I know is that dad said he would never give up hope and mom said she was very scared that I was in pain. They said they would go and discuss it and come back...I wish I knew what "it" was. Anyway, after a while they came to see me again and asked my day nurse, Nicky, when they would be doing another gas. She said they had just done one and were waiting for the results. Well, the results must have been good because when the doctor came back with them and told mom and dad, dad just smiled a big smile and said to mom, "there is our answer, do you want another fleece". I really have no idea what they were talking about but when nurse Nicky asked if they wanted care to carry on, dad just said yes. I was happy then.

Dad says sometimes we are put in really difficult positions and have to make decisions that will change our lives, and in those times Jesus is always willing to help and make the decision for us. I can't wait to go up and have a chance to do that because I know Jesus will always make the right decision because He is God and He knows best!

Day Thirty One: June 1st 2009

I had a visit from a kidney doctor today. He came all the way from a place called London and he had some good things to say to mom and dad. They had a long talk and grandpa Mike was here too so he listened to what the doctor said.

It looks like the doctors are going to try with the PD for a few more weeks until my kidneys start working better. Mom, dad and everybody at home and even in far away countries are praying for me so I am sure Jesus will fix my kindneys.

I also have a new type of breathing machine now and it is taking me a while to get used to it!

Day Twenty Nine

The doctors were thinking about stopping the PD today but mom and dad are not happy about it, so they prayed and asked Jesus to change their minds...He did.

Mom has been putting cream on me to help soften my skin, it feels great and now that I am not so puffy I can open my eyes and see her. Mom is very beautiful, dad is quite hairy.

Day Twenty Five

What a wonderful day today was; the sun was shining, my favourite PICU nurse, Nicky was looking after me and mom and dad spent almost the whole day with me. Nicky said I was having a really good day and I think she was right. Oh, and the surgeons came and put a new PD tube in today, so mom and dad were really happy.

Mom was so happy today and dad was too; he even started talking about something called rugby with my doctor, Andrew. On days like this I feel like I could soon be home.

Day Twenty One

Today was a great day! The doctors stopped giving me the medicine for my heart and I feel even better. They have also decided to try and get all the extra water out of my body but putting a tube in my tummy. They call it PD; mom had to sign a piece of paper to say it was ok for the surgeons to come and put the tube in.

Mom and dad are really excited because the doctors are trying something new and so far Jesus has been answering all their prayers, except one. The one they pray the most is for me to come home and that Jesus is saving till last.

Day Nineteen

Mom came to see me with my older sister Rene today. Dad was with the church and mom had to phone to ask him to come to the hospital because the machine that filters my blood has stopped working and the doctors say that I may only have a few days to live. Well, you can imagine what dad said..."they don't know everything!". Mom and Rene were crying, dad said he got uncle Cliff to pray with the church. I expect Jesus was listening so I am just waiting for things to get better.

One of the doctors called Emily had a long talk with mom and dad. She told them that all my important organs were not working properly and that I would die very quickly if the doctors stopped giving me the medicines for my heart. She also said it may be better to stop helping me breath and let me die instead of waiting for me to die on my own.

I know mom and dad believe that Jesus has already done things inside me to let me live and they won't give up. Dad told doctor Emily that he was trusting Jesus for a miracle for me and that if one does not happen, he is happy for me to go to be with Jesus forever. That sounds good but I do want to go home first, I haven't even played in the garden yet or had Cheerios for breakfast or slept in mom and dad's bed; there is still loads for me to do before Jesus comes to fetch me :-)

Day Eighteen

I got my first taste of breast milk today; it was yummy, even though they had to put it down a tube in my throat.

Mom likes to squeeze my hand and she loves it when I hold onto her fingers. On my right arm there is a big hole where on of the tubes that feed me went in, so mom prefers to squeeze my left hand. Dad always asks the nurse looking after me how the hole in my arm is healing.

Dad likes to sing to me when he visits; the song I like the best is 'Jesus loves me' and I try to open my eyes when he sings. Lately dad has also been reading to me from a book called the Bible; I think it was written by Jesus because it is all about Him and how much he loves his children; dad says I am one of them.

Day Fifteen

I moved to PICU today. I got a ride in the transporter and have been on a different breathing machine because of it. I find it a little bit harder on the this new machine but the whole move to my new home went quite smoothly. The nurses were really pleased.

Only mom was here to see me move, dad is back at work. I know he loves me and I am sure he will come and see me later.

My favourite nurse, Carmen, cried when she said goodbye to me. I will miss all the wonderful nurses at SCBU. They took such good care of me.

The nurses at PICU are also nice and they have much more space to look after me in than at SCBU. At the moment I am the only one here that is being looked after. This place also has a parents room just a little way from my bed and mom and dad can come and see me whenever they want without having to wait outside.

Today I also had a huge needle put in my leg for the dialysis and there is a bug machine next to my bed which is going to filter my blood; though the doctors and nurses are still trying to get it working.

Day Thirteen

Today is a great day because doctor Charlotte says I passed the test they set for me and they are going to try giving me dialysis. That means that they are going to try and help my kidneys get rid of all my puffyness. It also means that I will get a ride in the transporter and go down to PICU where all the older children get looked after.

I am starting to get a little nit lighter and mom and dad are really happy.

Day Eleven

Something good happened today, the doctors had a talk with one of the PICU (I'm going to learn what that means one day) doctors called Josep and he told them to stop giving me the medicine to keep me from moving. He also told them to start sucking the stuff out of my lungs. I am feeling better already!

Doctor Charlotte told mom and dad that they are going to give me a 24 hour test to see if my blood presssure can come right; dad phoned uncle Cliff and asked him to get the whole church to pray. I am sure that will do the trick, Jesus does listen to them when they pray and he knows all about me.

Day Ten

It has been a really hard week for me, and mom and dad. The doctors have had to give me so much extra medicine to help my blood pressure that I have swelled up like a balloon - whatever that is, dad says it a lot.

The really nice doctor Charlotte has had talks with mom and dad in a private room. I couldn't hear what they said, especially with all the noise in SCBU's "hot room" but when they came out they were all sounding a bit sad. I wish I could give them a hug but I have so much medicine in me to keep me from moving, I just can't.

Day Five

Today was not such a good day for me, my blood pressure has been too low and the doctors have been giving me extra watery stuff in my arm to help; it makes me really puffy. Mom and dad are really concerned, but they keep saying thank you to Jesus. I really can't wait to meet Jesus, he is ever so helpful.

Oh yeah, I also have pipes in my chest now which help take some of the watery stuff out of my lungs. It does feel good when stuff comes out.

Day Three

I had a visit from nanna and grandpa today, I think they were worried about me but at the same time happy that I was alive. The SCBU team were a bit short staffed today so Alison came over from PICU to look after me. I think dad was a little worried at first because one of the doctor's had to show her how all the machines worked which are looking after me. She said the machines in PICU are slightly different but that she knows what to take care of me; dad sounded relieved after that.

I have been breathing air from my breathing machine today and mom and dad are well pleased. Dad keeps saying thank you to Jesus!

Day One

My name is Ryan Jaydon Gordon. I was born today, May 5 2009, at 11:40PM at the John Radcliffe hospital in Oxford. I don't know the name of the midwives that delivered me, or the doctors who looked after me once I was born but boy there were loads of them.

Way back when I was only a tiny thing in mom's womb, we all went to the hospital for the 10 week scan. The doctors said I had far too much fluid behind my neck and I would probably die within the next few weeks. Mom was very sad and cried loads; dad was just angry and said that the doctors didn't know everything, God was in control. The doctor, who's name was Manish, said it would not be a bad thing to have the doctors kill me before I grew any bigger; mom and dad were not very happy with the advice and decided to keep me...phew!

Well anyway, after about 20 more scans and two amnio deductions (that's when the doctor sticks a big needle in mom's tummy and sucks out some of the watery stuff that I was swimming in), God decided it was time for me to be born, 4 weeks early.

My lungs had not developed properly and I was full of extra water so the doctor's took me away from mom and dad as soon as I was born. They put a tube down my throat to give me air and stuck some needles in my arms for medicine. It sounds bad but I have a special bed to sleep on it is really warm and comfy. Also, the nurse who is looking after me is really nice; her name is Carmen and she is from South Africa (the same place mom and dad are from).

Mom and dad came to see me just now; I couldn't see them because my eyes are swollen shut but I know their voices so well. They both held my hand and prayed for me. I wish I could tell them how much I love them but that will have to wait.

Thank you Jesus for letting me live. Amen.