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Our precious son

My life in the NICU

                                                  

 

Thursday 13th November 03 - Mummy was admitted to hospital today to keep an eye on me.

Saturday 15th November  -  I was born at 20:48 weighing 2lb 2oz.

Monday 17th November - I am very poorly. The doctor has told Mummy and Daddy to spend lots of time with me because they think i might not get better. They think i have something called Group B Strep and i also have a bleed in my brain and something called a PDA.

Monday 24th November - They started giving me my Mummy's milk today. Yummy Yummy!

Tuesday 25th November - They started giving me some antibiotics today as they think i might have got an infection from all the lines in me so they have taken some of them out.

Wednesday 26th November - I am feeling much better today and the doctors have tried me off my ventilator but i didn't like it very much. I got really tired and they had to put me back on after an hour. They have stopped my Morphine and are giving me Caffiene to make me more alert.

Thursday 27th November - The doctors have put me back on Morphine.

Friday 28th November - They think i might have something called NEC so they have had to stop my milk. I also have Thrush and am now on 4 different antibiotics.

Saturday 29th November - My ET tube blocked while Mummy and Daddy were here today and they got very upset because the doctors had to sedate me and put a new one in.

Tues 2nd Dec - May have another infection so they are keeping an eye on me.

Tues 9th Dec - They started me on some medicine today called Indomethacin to try to close my PDA. Increased my feeds again.

Fri 12th Dec - My first weigh in since i was born. I now weigh 3lb 1oz. My head circumferance is 28cm and i am 16in long.

Mon 15th Dec - My PDA hasn't closed with the medicine so i will have to have an operation to close it. My infection won't go away so they have moved me into a different room and changed my incubator and all my lines and ET tube to try and get rid of it.

Fri 19th Dec - The doctors are giving me Diuretics as i have got very puffy. They have stopped my antibiotics so i don't get immune to them. Don't think i'll be having the operation until after Christmas.

Sat 20th Dec- Had to put me back on antibiotics because i have a temperature.Had another blood transfusion today. My O2 was at 55%.

Tues 23rd Dec - Had to be reintubated today because my tube got blocked. 

Thurs 25th Dec - Merry Christmas Mummy & Daddy! Got lots of nice presents even some from the hospital, how nice is that! The doctors have told mummy & daddy today that my brain scan looks normal and they can't see any damage I think that was their best pressie ever!

Fri 26th Dec - I was weighed again today - 3lb 11oz. They put me on volume guided ventilation so i'm trying to do some breathes for myself.

Mon 29th Dec - Having some more antibiotics. Weighed again - 3lb 13oz.

Tues 30th Dec - Had another blood transfusion today and they have increased my diuretics because i am all bloaty again.

Weds 31st Dec- They had to put another ET tube in today because i pulled it out again and my cannula. They did a lumbar puncture today to rule out meningitis.

Thurs 1st Jan 04 - Happy New Year Mummy & Daddy! I didn't feel very well today. I was very agitated and all swollen so they had to sedate me.

Sun 4th Jan Don't feel very well at all today. They've had to put me back on normal ventilation because my oxygen keeps going up. They did a chest xray and my left lung looks very bad. I might have Pneumonia or it could just be secretions.

Mon 5th Jan - I got to have a cuddle with my Mummy for the 1st time EVER today. She has been so patient having to wait this long.

Tues 6th Jan - I'm going to have another blood transfusion today. They have changed my diuretics to try to get rid of more fluid but i don't look nearly as puffy as before. Had a new incubator.Im 3lb 15 and a half today.Had another cuddle with Mummy. I changed from continuous feeds to bolus feeds today.

Thurs 8th Jan - The doctors contacted Leeds Hospital about my operation in the morning. If my infection doesn't get any worse they will book me in for my operation next week. But when Mummy came back this afternoon my infection count had gone through the roof so don't think i'll be getting it soon.

Fri 9th Jan - I was very grumpy today so they had to sedate me again. Because i keep getting lots of infections they are going to test me for Cystic Fibrosis.

Sat 10th Jan - I pulled my tube out today whilst the doctors where examining me, at least they were on hand!

Mon 12th Jan - I've been enjoying my milk so they have put me on 2 hourly bolus feeds now. I'm now 4lb 8oz! When Mummy got home this afternoon the hospital rang her to say that Leeds are going to do my operation in the morning!! Mummy & Daddy hope i will get better afterwards. Had a big cuddle with Mummy in the evening.

Tues 13th Jan - I went to Leeds in an Ambulance with flashing blue lights. Mummy & Daddy set of at 0715, they are doing my operation at 10am. I am in the Jubilee Building, Ward 4. I got to the hospital at 09:45. They did a heart scan first and it showed that the left side of my heart is enlarged because of the PDA, this should get better after my operation. I went down to Theatre at 12:45pm and came out at 14:30pm. They had to put 2 clips on the PDA because it was very big. I was very Bradycardic afterwards but was stable when i got back to the hospital. Was in 60% O2.

Weds 14th Jan - I'm not very well today.  My heart rate is all over the place and i'm in 100% oxygen but sometimes my sats go down to 60%. Had my chest drain out.

Thurs 15th Jan - I'm even worse today. I am struggling to keep my oxygen levels up. My blood gases are very poor. Mummy wouldn't stop crying. They think they will have to give me steroids and hope that makes me better. The Doctor rang Mummy & Daddy at home at 21:15pm to tell them they had had to put me on a big machine called an Oscillator. They have stopped my feeds and are giving me antibiotics. They gave me a big blood transfusion in the night and are also giving me medicine to raise my BP. They are struggling to keep my saturation over 74%.

Fri 16th Jan - They are now giving me something called Nitric which helps the blood flow to my lungs. I am saturating better but am still in 100% oxygen. My blood gases got a bit better in the day and at one point they managed to turn down my O2 to 73%.

Sat 17th Jan - Tried me without the Nitric but i didn't like it so they put it back on. Had another blood transfusion. My heartrate is still very erratic. I pulled my tube out again today. Managed to get me off the nitric in the afternoon.

Sun 18th Jan - Back on the Nitric and in 100% oxygen again. I am very swollen again.

Mon 19th Jan - They have found out i have reflux so they are putting a tube into my intestines to the milk bypasses my stomach. It's called a Jejunul tube.

Tues 20th Jan - Feel a little bit better today. My Nitric has been turned down and my oxygen is down slightly. They stopped the medicine for my BP. Nitric was turned off completely at 1pm.

Weds 21st Jan - At first i was feeling alot better, so they decided to put me back on the normal ventilator. I didn't like it at all. I went back onto the Oscillator after a few hours. My O2 was 100% and i was saturating in the mid 80's. They have started to give me Dexamethasone - a type of steroid.

Thurs 22nd Jan -  I feel a bit better today. I am in 55% O2 but went down to 38% later on.. They turned me over onto my left side and i didn't like that and my oxygen went upto 100%.

Fri 23rd Jan - I had a really good night and in the morning my oxygen was at 45%. They decided to put me back onto my normal ventilator again. When Mummy & Dady rang at 11pm i was doing ok on my normal ventilator and was in 46% O2.

Sat 24th Jan - Had to reintubate me again at midnight because i pulled my tube out again, hehehe. I was very active today because of the steroids. My blood pressure is also very high. Had to sedate me again because i wouldn't keep still.

Sun 25th Jan - I am doing really well so well in fact that the doctors are taking me off my ventilator completely!!!!! At 12:40pm i went onto CPAP. Initially i was in 85% oxygen  but by 5pm i was down to 60%.

Mon 26th Jan - I was very irritable today because of the steroids. They gave me some medicine called Chloral to settle me down. Had my first cuddle with Mummy today without the ventilator.

Tues 27th Jan  I had a good night and in the morning my O2 was at 47%. I got to wear a babygrow for the first time today, mummy thought I looked very cute. They are trying to wean me off my morphine but they have to be slow about it because I have been on it for so long I am sort of addicted to it. My Daddy cuddle me for the first time today, it was lovely, hes been too scared to hold me up until now.

 

Weds 28th Jan  I have been a good boy and am only needing 30% oxygen. It took Mummy & Daddy 2 hrs to get to see me tonight because they got stuck in the snow.

 

Thurs 29th Jan Mummy thinks I look a yellowy colour and has mentioned it to the doctors. My oxygen has been down to 28% today!

 

Fri 30th Jan I have Jaundice again but it is different to the kind I had when I was born, this is due to the special food they gave me when I was born called TPN. It should just get better on its own in a few weeks. I look very skinny now because I have lost all the fluid I have been retaining.

 

Sat 31st Jan My big sister Laura came today and cuddled me for the first time, it was lovely. 

 

Sun 1st Feb I weigh 4lb 1oz now. I have lost weigh with being ill and losing all the fluid.

 

Mon 2nd Feb My Birthday, or should have been anyway. Mummy was due to have me today. Mummy took lots of cakes in for the lovely nurses and doctors. Had some tests today to make sure the Jaundice was just due to the TPN and not because there is a real problem with my liver. Had an abdominal scan which looked normal. Had urine and bloods send for analysis. Reduced my steroids today.

 

Tues 3rd Feb Came off my morphine altogether today and was a bit restless. I came out of my incubator today and into a cot! I am 3lb 13oz today so I have lost weight again. I had my eyes tested today and they look fine, will have them looked at again in a week just to be sure.

 

Mon 9th Feb Doctors are going to put something called Duocal in my feeds to help me gain weight because I am so small. At 11am they tried me off CPAP with just nasal prongs. I did so well!! They didnt put me back on until 15:45pm and that was only because I was getting upset and they thought it might calm me down. Ive been sat in a baby chair today as well.

 

Tues 10th Feb Came off my CPAP at 11am and I was still off it when Mummy & Daddy went at 18:15pm.

 

Weds 11th Feb Physio came to see me today and didnt think there were any problems. My jaundice is getting better to the doctors said.

 

Thurs 12th Feb Eyes tested again and they are good. Need to be seen again in 9 months. Been sat in my chair again today. I weigh 4lb 2oz today so I am putting weight on again. Off CPAP for 12hrs today.

 

Sunday 15th Feb Have left me olff my CPAP altogether now cause I have done so well. Im moving out of Room 4(ICU) today into Room 7(HDU) today.

 

Mon 16th Feb I was weighed again today 4lb 7oz. They have changed my food now to something called Nutriprem 2 which will make me gain weight even better. Dr Primhak came to see me for the first time today. He looks after babies who have problems with their lungs and need oxygen. I had a chest xray and some ECG monitoring. They are now actually planning for my future and for when I come home, wow! Had a head scan today as well.

 

Tues 17th Feb Mummy couldnt come to the hospital today because she has a really bad cold. They have started to give me some milk into my tummy to see how I like it. Am having another blood transfusion today. Have had a trace and had my oxygen set at 0.5 litres, Im not to go below that.

 

Thurs 19th Feb I am enjoying having milk in my tummy again. They are reducing my steroids a lot now to try to wean me off them. They are putting something called Thick and Easy in my milk for my reflux. Stopped some of my medicines. 4lb 8oz today.

 

Fri 20th Feb Mummy got a shock when she came today. I am now in Room 8(Special Care)! I am having all my milk by NG tube into my tummy now. Having extra Duocal now as my weight gain has dropped off a bit.

 

Sun 22nd Feb I am 4lb 12oz today.

 

Weds 25th Feb My oxygen requirements seem to be going up. I am in 1 litre most of the time now. They did an xray to check my lungs but they were fine. They did find though that I had brittle bones. At some point it looks like my arm and ribs have been fractured, they only spotted it on the xray because now they are healing. They are giving me some supplements to make my bones stronger.

 

Thurs 26th Feb 5lb 1oz today. Grandad had a cuddle for first time today.

 

Fri 27th Feb I had my first bath ever today but I didnt like it very much. I had 16 xrays done this afternoon to check for more broken bones just to be safe. They found another in my foot but that was it.

 

Sun 29th Feb Having my feeds every 2 hours now.

 

Mon 1st Mar Im having tiny amounts of milk from  bottle but not a lot. I am now on 3 hourly feeds. Are going to increase my steroids again slightly so they can get my oxygen down hopefully. Am having a trace done tonight

.

Weds 3rd March Ive done quite well with my bottles today.

 

Thurs 4th Mar - The Speech Therapist came to see me today and thought i was doing quite well. They have added extra Thick & Easy to my feeds for my reflux. I weigh 5lb 13oz today.

 

Sun 7th Mar - I weigh 6lb 3oz and i am 46.4cm long.

 

Mon 8th Mar - Dr Primhak came today and was fairly pleased with me. He say's i should be home by the end of the month!. Increased my steroids again today to try to reduce my oxygen. Because i am doing so well they have given me my first immunisations today.

 

Tues 9th Mar - I am not very well today. I had a very high temperature in the night and haven't slept very much. I am not tolerating my feeds very well and they may have to put up a drip if i am sick again.

 

Weds 10th Mar - I'm feeling even worse today. I have been put back in an incubator because i keep desaturating. I am in 3.0 litres of oxygen and there is oxygen in the incubator too. They have done a chest xray which has shown i have a large cyst in my right lung which is filled with air. They are giving me antibiotics to be safe.

 

Thurs 11th Mar - I feel a little better today. My temperature has gone and i am in 1.25-1.5 litres of oxygen. I am back in my cot and i've been weighed again - 6lb 11oz.

 

Sat 13th Mar - Back in the incubator! just for a couple of hours as i needed more O2. I can't seem to keep it stable.

 

Sun 14th Mar - I keep desaturating all the same and need lots of looking after. Another chest xray has shown that my cyst has got even bigger. They are giving me a blood transfusion and they are moving me to Intensive Care -Room 3

 

Monday 15th Mar - If my blood gases get any worse i will have to go back on a ventilator. One of Dr Primhaks team came and they have increased my steroids and put me on strong antibiotics. Am in an incubator in 3 litres plus incubator O2. They are giving me Chloral becaue i am very upset.

 

Tues 16th Mar - My blood gases are back to normal and i'm settled again. I am still in high oxygen though. Dr Primhak came in the evening and turned my O2 down and i was ok.

 

Thurs 18th Mar - My oxygen requirements are better and i no longer need the incubator oxygen.

 

Fri 19th Mar - Moved back to Room 7 this afternoon.

 

Sunday 21st Mar - Weigh day - 7lb 7oz and 48cm long.

 

Monday 22nd Mar - My O2 requirements are still abit erratic. I needed 2.25 litres in the morning but only 1.5 in the afternoon. 

 

Tues 23rd March - I needed 2.5 litres this morning. Dr Primhak says they may have to drain the cyst if i don't get better.

 

Thurs 25th Mar - I am 8lb exactly today.

 

Fri 26th Mar - I smiled at my mummy for the first time today.

 

Sun 28th Mar - I am 8lb 9oz today and 49.1cm long. I am putting on weight well now so they might stop my Duocal.

 

Mon 29th Mar - Stopped my Duocal today. Dr Primhak came today and said i couldn't go home yet, mummy got very upset. He wants my oxygen requirements to be a little more stable. They have increased my Diuretics to see if it makes a difference. He has took the xray of my cyst away to get some advice on what to do about it.

 

Tues 30th Mar - I am going to the Childrens Hospital tomorrow to have a CT scan done of my cyst. Am having my feeds change. I will have a feed every 4 hrs in the day and then a continous feed overnight from 9pm to 5am. Mummy put my NG tube in today for the first time. Mummy got to have me all to herself this afternoon. They gave her one of the parents rooms so we can spend time together as a family. It was lovely. I was in 1 litre of O2 today for the first time in ages.

 

Weds 31st Mar - Went to the Childrens Hospital for my scan. I didn't like it and cried all the time.

 

Sun 4th April - Mummy and daddy came and spent all day with me in the Parents rooms.

 

Mon 5th April - Dr Primhak came and told Mum that he needs me to have a good trace in 1 litre of Oxygen or they will have to operate and take out the part of my lung with the cyst in. I better be a good boy now.

 

Thurs 8th April - I still need upto 1.5 litres of Oxygen sometimes. Weighed again today - I'm 9lb 3oz.

 

Sun 11th April - Mummy and Daddy spent all day with me again. Daddy gave me my first bath today, he was very unsure but i enjoyed it.

 

Weds 14th April - I have mostly been in 1 litre of Oxygen. Dr Primhak came and was pleased with me. He says i can go home next week!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Mummy was crying tears of joy. The trace i had done wasn't brilliant but will do. I still might need to have an operation though.

 

Thurs 15th April - I am 9lb 15oz today. Mummy was shown how to use the Kangaroo Pump that will feed me overnight today.

 

Fri 16th Apr - I had my ears tested today and passed with flying colours.

 

Sat 17th Apr - Mummy and Daddy are staying overnight tonight to get used to looking after me. I was a good boy and slept from 8pm til 0630am.

 

Sun 18th Apr - I have been a grumpy boy today. I just want to go home now.

 

Mon 19th April - I can't believe that i am going home tomorrow. My Kangaroo pump arrived at home today and the nurse who will look after my oxygen went to visit mummy. I had a head scan today and it showed that the ventricles in my brain are enlarged so the fluid isn't draining away properly. They will keep an eye on that and measure my head regularly.

 

Tues 20th April - I'M GOING HOME TODAY!!!!! They had a meeting about me in the morning and then they got me ready for going home. Mum & Dad took me downstairs and Gwen and Kate came down with me. Daddy put me in the back of the car and off we went. Mummy just looked at me all the way home but i just slept.

We got home and Mummy & Daddy just looked at me, i don't think they could believe i was actually home.

 

Well that's my Diary from the Intensive Care Unit at Jessops Hospital in Sheffield.

 

If you want to know what i'm upto now, please visit the updates page.

 

Thanks for reading!

 

Lots of love

 

Corey xx