I am a wife, mother & keen photographer with an obsession for Scrap booking. My motto is live life to the max and don't regret too much!
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This will be the 3rd time i have written this post. Has anyone else had problems with blogger? Or is it just me! The first time i posted it it was the only post that appeared and all the others disappeared, the second time when i clicked publist post it said page could not be displayed and when i went back everything had gone. I'm going to copy this before i publish!!
Anyway, it was Corey's RCV shots again today, it was awful! The jabs really, really hurt him this time, more so than last time. He seemt as if he was mad as well as upset and was really punching and kicking too. It was so awful to think that i've put him through this. I just hope it's all worth it.
He was weighed and is now 20lb 4oz and Dr P listened to his lungs whihc he said sounded clear and he was making minimal effort with his breathing.
The subject of feeing was brought up again but he is putting g-tubes off for a least a couple of months as he see's no urgency. He's started him on some tablets called Omeprazole for his reflux to see if they will make a difference. Fingers crossed.
I met with a researcher today from the University of Sheffield. She is conducting a study regarding the care of special needs babies/children in the comminity upon leaving hospital. We chatted for a while and was happy to help. Hopefully the info i gave her will be of use.There's a website regarding the study if anyone is interested.
I am sad. DH and i aren't getting on the the moment. All we seem to do is argue. I don't even really know why.I keep thinking what it would be like to be on my own and sometimes think it would be so much easier. At least we manage to keep the shouting away from Corey, even though he's still young i don't want him subjected to that. At the moment i much prefer my own company to that of hubby. I love spending all day just me and Corey and then at 4pm when DH is due home i seem to get this black cloud over me. I'm hoping it's just a phase i'm going through but what if i don't love him anymore? I'm not sure i want to be a single parent, not that there's anything wrong with being a single parent. I'd always imagined bringing Corey up in a loving family environment but at the moment there is no loving.
I am officially getting fat!
I've known this for a while and have tried so hard but i love food too much!
My latest downfall is Croissants. I used to be a toast girl or sometimes nothing at all but recently have started to have these french delights. Yesterday i had 4 for breakfast, yes you read right, 4! And i loved every mouthful, all with a hint of strawberry jam. I'm also feeling abit low so i don't think that helps. I would love to be one of those people who feels nauseous when stressed and therefore doesn't eat but i am the complete opposite, i eat. This evening we had to take Corey to the doctors for his final flu jab so we were late getting back. I made a huge amount of vegetable broth this morning for Dave's dinner so that was him sorted but i never think of myself and then alway's end up eating crap. Well the crap tonight was Fish & Chips from the local chipshop. dave's fault, he suggested it. Although very yummy i'm sure there was 1000 calories in them and 30% fat. Then i had chocolate cake with custard for afters. In my defense it was low fat custard! Who i am trying to kid here. I am gonna have to do some serious exercise. Dave's just bought an exercise bike and i have only been on it once. Tomorrow i will use it, i promise!
I broached the subject of babies again this evening. I really would like another baby. Maybe i'm mad! I mean it's only 12 months since i gave birth at 28 wks and ended up with a baby fighting for his life and only 7 months since he came home. But i desperately would love a sibling for Corey. When i was pregnant i said i didn't want anymore but things change. Even going through what i have i still want one. I guess deep down inside i'm hoping that lightening won't strike twice but who knows. Anyway looks like i'll never know. Dave is adamant he doesn't want another. I thought he was softening a little this evening as he was very quiet whilst we, sorry, I talked about it. He says he is petrified of this happening again and he couldn't go through it a second time. I know what he's saying is true but if we all thought like that we'd never do anything, right? I said if we could guarantee that it would be 100% safe would you consider it and he said yes. I'm lost now. I can't have a baby on my own so i guess for the moment i have to put it out of my mind.
Well the weekend has been pretty unproductive. That unproductive that i can't actually remember what happened!
Dave went to the flicks on Saturday to see After the Sunset. Said it was an ok movie.
Corey has cried and cried today. He really has got to me. I was so fed up! I can see a white blister on his upper gum so think his top teeth are about to come through. Hope he's feeling better tomorrow, don't think i can cope with another day like today. The only thin that kept him quite was putting him in his door bouncer but you're only supposed to leave them in it for 30 mins at a time.
Did some more scrapping this evening. Going to have a go at making Christmas cards as well and made my first one over the weekend.
Corey had a Neonatal Follow up appointment today. I was so nervous wondering what they would do and also having to enter 'that' building again. We haven't been back to the unit sice Corey was discharged in April. I felt sick as soon as i entered the building.
Anyway, we saw Mike Smith, Corey's consultant. It was lovely to see him again after so long, he's a really nice chap. He couldn't believe how big he was and said he looked really good. He did some basic skills with Corey. Holding and reaching for objects, holding 2 objects at a time which he did and Dr Smith said that was very good because at 7 months it isn't possible and Corey is 9 adjusted. He also managed to pull a rattle on a string which indicates his brain is able to plan, another good sign. He checked his muscles and had him sitting. He said his muscle tone was excellent. All in all he was very pleased with him. If there had been a problem he would have brought him back to see him but as he is looking good he doesn't want to see him til Feb 2006!! This is when he will be 2 yrs corrected. Woohoo!
Then we went in to see the staff who looked after him on the neonatal unit. It was fantastic! They absolutely adore him and spoiled him rotten. He had so many hugs he really enjoyed himself. They said he looked fabulous and of course i had to agree!
They have asked me to take part in a research study which i have agreed too. It involves seeing if aftercare of children with 'needs' is adequate enough. I can definately give them a very long list on that one!
Went Christmas shopping tonight and actually got quite alot done, for a change. My feet are killing me now!
Well she rang, the nurse in case you're wondering. Guess what, we aren't going down. I knew he wouldn't. If he was the same in 0.1 why not! She gets me so angry sometimes!!!!!
Another 2 wks wasted. She even tried putting off the next appointment by a month instead of 2 wks, no chance matey!!!!!
We have an appt at the hospital where he was born tomorrow. It will be the first time i have been back since we came home in April so i'm not sure how i'm going to react. It's a developmental assessment and i'm dreading them telling me somethings very wrong!
Well, i thought the trace was ok. Nothing to write home about but ok. I turned him down from 0.2 to 0.1 for a good 6 hrs and it made no difference to his saturation.
Well when Sue rang at about 7pm, yes 7pm! Talk about making you wait she still didn't give us an answer. She said he had been between 93-95% all night and therefore he averaged 94%. I thought that was ok. Oh No, that's not ok apparently. She didn't know what to do so will have to wait til Thurs and speak to Dr Primhak! She said he will do one of three things, turn him up, turn him down or leave him as he is. You don't say!!!!!!
Well the day started off like no other. A call from BBC Look North, a TV station wanting to interview me for the local news! They had seen the article in the newspaper and thought it was a story the public would like to hear. They came at 1130 and insterviewed me, took pictures of us and of some pictures of Corey when he was born. It was on the news at 1830 and it was a splendid piece. They had pictures and footage of Corey with my words voiced over the top. Then close ups (omg) of me speaking and Corey playing with his toys on the floor, it was really amazing, i was so pleased.
Had the Speech Therapist today. Same old story, carry on doing the same. I told her that he was gagging on everything and low and behold the first spoonful made him sick. Just before i gave him anything he started salivating profusely. I thought this was a good sign but she said not. Apparently it's more probably like the mouth watering experience you get just before you vomit. Nice!
Sue came in the afternoon with the trace equipment. She was as negative as ever! I mentioned about the TV program. All she could say was that other babies were smaller than Corey and born earlier. Yes they were but they wanted OUR story! She also said that she didn't think Corey would be off the O2 until after March. I so hope she is wrong, for my sake and Corey's i want him off the damn stuff but also i would love to prove her wrong!!!!
My big boy is One year old today. I am so very proud of him!!!!
Dave had the day off work today and we got up with Corey about 730am to open his pressies. I was so excited for him although he had no idea what all the fuss was about. He got lots of presents and cards.
We had a really small party for him with lots of food and drink and had a lovely Winnie the Pooh cake make for him.
Completely forgot about the newspaper article so i called Dad to see if it was in as he has the newspaper delivered. He said he hadn't received it yet but he knew we were on the front page! OMG. I was so nervous. I didn't want poor readers having to gaze at my face when they got their newspaper ;D
Anyway Dave and i ran out and got 3 copies. Laura wanted a copy and i wanted a couple. They had a pic of me and Corey on the front page with the headline and the story was on page 5. There was a lovely picture of me and Corey looking at each other and a little pic of him on his own. I was thrilled. It will certainly be something to show him when he's older. They did get a small piece wrong. They said he only needs oxygen from time to time, but in fact he needs it 24/7.
All in all it was a pretty good day. I thought i would be more emotional but i think i was far to busy to be anything!
He's the newspaper article:
The story reads:
A YEAR ago Corey Stannard was fighting for life as he struggled for his every breath.
The Sheffield tot was born three months prematurely after his mother developed dangerously high blood pressure known as pre-eclampsia.
Doctors warned his parents he might not survive long.
But today Corey and his family are celebrating his first birthday and looking forward to many more.
At birth the new arrival weighed a pitiful 2lbs 2oz. His lungs were not properly formed, so the infant was placed on a ventilator to keep him alive.
"The whole thing was a bit of a whirlwind shock," said mum Cath, of Houstead Road, Handsworth.
"I went into hospital on the Thursday to get checked out and 48 hours later he was born. It was a bit scary.
"He couldn't breathe properly on his own. He was in hospital for five months with a whole variety of problems.
"His blood supply wasn't getting around properly. He was on a ventilator for 10 weeks.
"But, as often happens with children on ventilators, he got chronic lung disease and his chest was in a very poor state."
To add to the difficulties he needed surgery at 10 weeks to increase the blood supply to his lungs.
Although he still needs to take oxygen from time to time and is largely fed through a tube, Corey is well on the road to recovery and is growing stronger with every passing week.
"He should be off oxygen altogether fairly soon," said Cath. "He is like a normal one-year-old, although we have to be careful.
"He has a low immune system so any bugs or colds can be more serious."
The family are having a small get-together today and will celebrate his first year of life with much joy and more than a little relief.
"It will be a happy occasion," said Cath.
"A couple of times we didn't think he was going to make it. But he was a little fighter.
"To get to be a year old and be fairly healthy is wonderful."
I called the Sheffield Star again today, our local newspaper. I had been in touch previously with them to put a Happy Birthday notice in for Corey's birthday on Monday. No-one seemt to know what i was talking about. Apparently the woman who originally spoek to me was on vacation. Grrrrrrrrrrrrr. This was inmportant to me! Anyway i ended up talking to a very nice man called Tony who took all the details of Corey's story and said he would like to send a photographer round. An hour and a half later she was here. She took loads of photos of the two of us together so it will be interesting to see which one they use. I can't believe they are going to do a story about him!
Well Corey's feeding has hit an all time low. I can hardly get anything into him orally. He gags at everything i give him. Sometimes as soon as the spoon hit's his mouth.
I know now 99.9% that we will have to have a G-Tube. I just have to face the fact.
On a positve note, the sickness is getting better i think.
Corey has been the child from hell this weekend. They can change their personality at the flick of a switch! Thurs & Fri he was an absolute delight and then he grumbled and moaned all weekend. Yesterday he was fine too and he seems to be ok today so far!
Anyway Saturday we had a trip to the Ikea in Leeds to try and get a desk for my new scrapbooking room. Yes i am at last getting it set up. So we went and came back with nothing. I'm going to have to learn to control my temper though. I went in on my own because last time we took Corey he came back with a cols and with it being RSV season i wasn't taking any chances. So i couldn't see one i liked and then when i did i didn't think it would fit in the car. So like a moody teenager i stomped out of the shop in a foul mood and took my frustrations out on my poor husband. I know i'm doing it but i just can't seem to stop! I'm so bad. Anyway, 5 mins in the car and i calmed down and unlike me i actually apologised. So we popped into the big shopping centre on the way home, Meadowhall, or Meadowhell as everyone calls it, especially this time of year. I wasnted to get a storage unit for my scrapbooking supplies. They had it in stock but being the idiot that i obviously am didn't think to look at the measurements til i got in the shop and didn't realise it wasn't big enough to fit my 12 x 12 papers! Grrrrrrrrrrrr, i'm such an idiot. Anyway DH very kindly took me to Sainsbury's Homebase where i found a rather nice see-through 4 drawer unit.
When i got home i browsed the web looking for desks and eventually settled on a standard rectangular one and seeing as i wanted an L-shaped desk ordered two so i could fit them side by side which i have done. They arrived yesterday and i prompty whisked them upstairs to make them up as they were self assembly. The leaflet did say it needed 2 people but i thought 'what the heck!' Anyway the only part i got stuck with was lifting the desk top onto the legs because it was very heavy but i did manage it. So now i have a scrapbooking area to call my own and hopefully my back will recover from scrapping on the bedroom floor! Hopefully i will keep it as tidy as it is right now!
Well, i haven't been on here for quite a while now. It's been a very busy week and so i haven't really had the time to write.
Corey had his hospital appt for his RSV Vaccine and it was awful! They weighed him, 19lb 5oz now so at least he's putting weight on. They tried to get some blood from him but didn't have any luck, they tried 3 times and he was screaming his head off, twice in his hand and once in his arm. He said he wasn't going to try anymore and they would just have to live without it.
For those of you that don't know, Corey is being entered into a trial for a new drug. He could either get that or the old style Synagis that they usually use, they are giving 50% one and 50% the other so it's pot luck really. They take blood before, during and after to see how the immune system is responding but we have to write notes everyday in a journal so they can monitor everything. He's been fine since he had it on Wednesday, no ill effects at all although today he has been super grumpy but i think that's his teeth. Here's a link telling you a bit more about the new drug. It could be 20 to 100 times more effective than synagis so i really hope it works.
Sitting is getting really good now although he does still fall over so have to put cushions around him to stop him.
He did something really funny today. He was sitting in the room playing with one of his toys and he just started laughing at it. For no reason at all he was hysterical about this stripey toy! Weird!
His bottom two teeth are really through now and the gum around one of them has been bleeding so i think that might be why he's been grumpy.
Will add to this later when i can remember what happened! :)
Name: Cath Home: Sheffield, United Kingdom About Me: A baby will make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for. See my complete profile
