Wednesday, 4 July 2012
Sunday, 17 June 2012
Oscar's 9 days in Intensive Care
Day 1
Saturday 21st January 2012
Seeing him after the operation was such a massive relief, I had forced myself to be prepared for all outcomes, I am ashamed to say I had envisaged his funeral. I felt that by doing this I would be softening the blow if the unthinkable happened.
No new parents should have to think like that.
This is Oscar straight after surgery, it's quite shocking so I apologise if you find it upsetting.
Day 2
Sunday 22nd January 2012
Today was a rest day, there was nothing we could do apart from visit him, whisper in his ear how strong he was and how much we loved him.
Day 3
Monday 23rd January 2012
My first thought when I saw Oscar was he didn't look good at all. I had a sinking feeling something wasn't right, he looked worse than straight after the operation. The Doctors told us he was stable and they were going to attempt to close his chest. They do this actually in the intensive care room, they pull the curtains around the cot and do the surgery right there.
The first attempt to fully close his chest didn't go well, there was too much fluid so they just closed the skin and said they would try again the following day.
Day 4
Tuesday 24th January 2012
Oscar looked terrible today. I call this day the day he nearly died as I will go on to explain.
We had accommodation on the floor up from intensive care so we could pop to see Oscar anytime of the night or day. I had started to invite friends to come and see our beautiful boy, despite the wires I wanted everyone to see him, he was perfect and we were so proud of him, I was terrified if he died and nobody had seen him how awful for him and for us that would be. So people arrived and brought presents, I went to the pub for some lunch with my boss and a close friend. Alan was with other friends, we both knew they were going to attempt to close Oscars chest again that lunchtime.
I was expecting to see Alan back at the hospital when the chest closure had finished. He came into the pub and sat down next to me, he calmly told me we needed to go back to the hospital.
Oscar hadn't responded well to the chest closure.
I knew it, I knew he looked awful that morning.
His tiny heart had stopped for 90 seconds, Alan had walked in on a crowd of Dr's and nurses performing CPR. He started breathing again and we were told it was touch and go, he needed to start fighting if he was going to turn a corner.
I walked in later that same day to see the nurses 'bagging' him again.
I thought our baby boy was going to leave us this day, I really did, he looked like a waxwork, so pale and just so so poorly. His legs were swollen and purple which was beginning to worry the Dr's, they attached more tubes and different drugs to try and control the swelling. Oscar had an ultrasound which revealed clots, a large one in his right leg.
Oscars poor legs and feet so swollen from the clots
They started a course of injections with a drug called Clexane, he was to have these injections twice a day for 6 weeks. Alan and I later had to learn how to these injections ourselves.
The next 24 hours were a blur, I felt so empty just so bloody helpless. I wanted to see Grace and hug her, she must be missing her new baby brother.
Day 5
Wednesday 25th January 2012
I went in to see Oscar at 6am, I couldn't sleep. A German Dr came over to speak to me, I had seen him around intensive care a few times but he never made eye contact before so I was surprised he came over to speak to me. He quietly said 'I think he has turned a corner,' and gave me a smile. I later found out from Alan that it was this same man that brought our baby back to life the day before.
Oscar was stable and looked a bit better than the day before, he had a bit more colour and was opening his eyes occasionally and moving slightly, his legs were still horrendous though.
Today Oscar was one week old!
Day 6
Thursday 26th January 2012
I finally got to hold Oscar today!
I had to use an oxygen tube as he wasn't taking in as much oxygen as he needed to.
I was feeling better, able to walk much easier, to be honest I had carried on as normal and not even thought about the fact I had just had a major operation as well. Holding him he felt so small, he had lost an awful lot of weight. Grace had a hold of her little brother too.
Day 7
Friday 27th January 2012
He hadn't coped too well breathing so they had put an oxygen box over his little head, he was peeping through the perspex at me, cheeky baby!
Saturday 28th January 2012
Overnight Oscar was given a transfusion, this was to give him a boost of oxygen into his blood. He was still under the oxygen box as his sats dropped significantly in the normal air.
Day 9
Sunday 29th January 2012
I had had a bad nights sleep and was starting to feel like I was going insane, sleeping at the hospital was hard, being away from Alan and Grace, I was feeling really sorry for myself and spent most of the morning in tears. My sister came up to the hospital to help me out as Alan was working. We popped in to see Oscar and I saw he had a cannula sticking out the side of his head, there was blood all over the sheets from where they had been attempting to insert it, I was hysterical I didn't know what the hell it was. The Doctor tried to calm, me down explaining they had used up all his tiny veins so this was a last resort. If he took a turn for the worse when he was back on the ward they needed quick access via a cannula. These things are awful, they can take forever to finally get one inserted correctly. Oscar will have to have these every time he's in for surgery.
Whilst the Dr was explaining he say Oscar was being discharged up to the High Dependency Unit that afternoon....I was like 'What???' So from being a total wreck in tears I was skipping around happy, our boy was going to be one step closer to coming home!
AND I got to feed him with a bottle, the nurse started it off as they worry babies will struggle, Oscar struggle to eat? I don't think so, the ravenous little monkey chomped on that bottle for dear life. He has been the same ever since, we are lucky in that respect as we witnessed how difficult it was for other parents to get their babies to eat at all.
Although he was able to take a bottle he still had the feeding tube in so they could administer drugs and milk, this way they knew exactly the quantities he was receiving.
He was discharged up to the HDU on Ward 11 at 2pm...our brave baby had come so far.
Monday, 11 June 2012
Oscar Jack Wright born 18th January 2012
Finally sat down to write in my blog...20 weeks and 5 days after the event!
Oscar arrived safely via cesarean on the 18th January after a lonnng wait throughout the day as an emergency case was rushed in before me. (the emergency case is now a good friend of mine as our babies have similar heart problems and share the same birthday!)
Oscar looked perfect when he was born, crying and just beautiful. I was in some sort of other universe, I felt so strange, turns out I lost an awful of of blood as they struggled to stop the bleeding.
I remember asking if he was breathing ok and when can they take him...they were showing him to Alan and I but I just wanted him looked after, I felt the longer they waited the worse he'd get as I knew his heart wouldn't cope. I could see he didn't have Downs.
Oscar was taken to the Neo Natal unit in the Womens hospital, Alan went with him and I went to the recovery room.
Alan brought me some photos on his phone to show me, all I could say was, are you sure thats him? Is it definitely him? I couldn't tell, I had only seen him for a few minutes. I panicked and thought what if they mixed him up with another baby, the feeling of complete uselessness was to stay with me for weeks.
I was wheeled back to the ward, the 3 women had their babies, mine was safe in another hospital but I can't begin to describe the feeling, I'd had a baby but I couldn't see him or hold him.
We left him there on Ward 11 and were told his open heart operation would be happening in the morning.
At home we were a mess, it was such an unbelievably empty feeling, to be home without him :(
The following morning we went back to the hospital with as much resolve as we could find to be with our new baby before he had his operation. I could hardly walk so I was taking painkillers literally to the minute, I highly recommend co-codamol, I owe a lot to them!
The nurses in the High Dependency Unit on Ward 11 were lovely, the one looking after Oscar helped Alan and I to wash him and let us cuddle him for a while.
Then it was time for us to take him to theatre. Alan couldn't do it, he broke down. I carried our baby boy down the corridor and into theatre with a nurse either side of me. I laid him on the table and stroked his tiny hand as they put him to sleep. He looked so peaceful, I still have the babygrow he was wearing that day, it's my lucky mascot I will be taking it with me when he has his next op!
The operation lasted 5 hours.
We got the call at 4.30 that we could see him, we ran back to the hospital (well Alan did, I sort of shuffled) In amongst all the wires and machinery was our tiny boy, with a CHEST OPEN sticker and hooked up to a vent. He was alive, we were ecstatic.
Oscar arrived safely via cesarean on the 18th January after a lonnng wait throughout the day as an emergency case was rushed in before me. (the emergency case is now a good friend of mine as our babies have similar heart problems and share the same birthday!)
Oscar looked perfect when he was born, crying and just beautiful. I was in some sort of other universe, I felt so strange, turns out I lost an awful of of blood as they struggled to stop the bleeding.
I remember asking if he was breathing ok and when can they take him...they were showing him to Alan and I but I just wanted him looked after, I felt the longer they waited the worse he'd get as I knew his heart wouldn't cope. I could see he didn't have Downs.
Oscar was taken to the Neo Natal unit in the Womens hospital, Alan went with him and I went to the recovery room.
Alan brought me some photos on his phone to show me, all I could say was, are you sure thats him? Is it definitely him? I couldn't tell, I had only seen him for a few minutes. I panicked and thought what if they mixed him up with another baby, the feeling of complete uselessness was to stay with me for weeks.
Oscar Jack Wright 3 hours old
I was in a ward with 3 other women, I was taken to see Oscar a few hours later, he was hooked up to Prostaglandin and all sorts of other tubes in an incubator but he was sleeping and looked like such a healthy strong baby! He was 6lb5oz at this point.
They took him in a Critical Care ambulance to Birmingham Childrens Hospital that same night.I was wheeled back to the ward, the 3 women had their babies, mine was safe in another hospital but I can't begin to describe the feeling, I'd had a baby but I couldn't see him or hold him.
Grace and her new baby brother Oscar
I focused on getting mobile and over the next few days before I could get to BCH to be with Oscar. I got over there on the Friday afternoon, Oscar looked adorable, they had put a babygrow on him. I got to have a hold of him, he was tiny. Grace was such a proud big sister, stroking his head and kissing him.We left him there on Ward 11 and were told his open heart operation would be happening in the morning.
At home we were a mess, it was such an unbelievably empty feeling, to be home without him :(
The following morning we went back to the hospital with as much resolve as we could find to be with our new baby before he had his operation. I could hardly walk so I was taking painkillers literally to the minute, I highly recommend co-codamol, I owe a lot to them!
The nurses in the High Dependency Unit on Ward 11 were lovely, the one looking after Oscar helped Alan and I to wash him and let us cuddle him for a while.
Then it was time for us to take him to theatre. Alan couldn't do it, he broke down. I carried our baby boy down the corridor and into theatre with a nurse either side of me. I laid him on the table and stroked his tiny hand as they put him to sleep. He looked so peaceful, I still have the babygrow he was wearing that day, it's my lucky mascot I will be taking it with me when he has his next op!
The operation lasted 5 hours.
We got the call at 4.30 that we could see him, we ran back to the hospital (well Alan did, I sort of shuffled) In amongst all the wires and machinery was our tiny boy, with a CHEST OPEN sticker and hooked up to a vent. He was alive, we were ecstatic.
Monday, 9 January 2012
Facing the New Year!
We started the new year with a positive outlook, bought a few more baby clothes, wrote a few more lists! Alan purchased a babygrow complete with hat and mittens...all with the Villa logo on, hmm I think we need to talk.
First thing to do in the new year was get Grace settled into the new school, she was so nervous and cried on the way saying she felt 'queasy', but a very happy child emerged at the end of the day with a whole load of new friends she'd made! So proud of her, we have moved a few times so she's had to start at a few new schools, I hate having to put her through that but this time we are settled in the new house with no plans to move (for a few years anyway!)
On Thursday 5th January Alan and I had a tour of where our baby will be treated at Birmingham Childrens Hospital. We met with Theresa, a cardiac liaison nurse who knew about our baby's condition and offered some really useful information, she informed us that his DORV (one of his problems) falls under the 'Taussig-Bing anomaly', I knew there were various types of Double Outlet Right Ventricle and have read all about this particular one so I am happy to put a name to it.
After baby is born he will hopefully stay with me for a few days until he is moved over to BCH. We were shown to Ward 11 which is where he will go prior to his open heart surgery, this is providing he is stable on the Prostaglandin drug (Prostin). If he isn't they will be whisking him straight from BWH to theatre as soon as possible after the birth. Working on the assumption he responds well to the drug he will be taken from Ward 11 to have his op, probably during the first week, the op could last around 4 hours we have been told.
After this we were shown into the Intensive Care Unit (ICU), Alan found it more difficult than me, I suppose I have read every last bit of information I can get hold of about our baby's condition, that's what has helped me face this, Alan is the opposite and has kept a positive attitude throughout without feeling the need to read endless scenarios.
We saw a tiny baby who had had open heart surgery that morning with the label 'Chest Open' covering the incision, this is standard as the heart needs to rest afterwards and will be swollen. Theresa told us they perform around 500+ heart surgeries on babies and children a year at BCH, I asked how many more parents are in our shoes, apparently there are 8 sets of parents facing similar problems with newborns this January.
You hear people complaining about the NHS, not us, the ICU is a bustling environment with 22 beds and people stationed around each bed 24/7. Amazing. We left that room with our spirits lifted, our baby will be given the best care possible.
So...now we are just going to enjoy the final stages before our baby makes his entrance, what a pregnancy this has been. So many mixed emotions, good days bad days...just one hell of a journey...9 days left to go.
First thing to do in the new year was get Grace settled into the new school, she was so nervous and cried on the way saying she felt 'queasy', but a very happy child emerged at the end of the day with a whole load of new friends she'd made! So proud of her, we have moved a few times so she's had to start at a few new schools, I hate having to put her through that but this time we are settled in the new house with no plans to move (for a few years anyway!)
On Thursday 5th January Alan and I had a tour of where our baby will be treated at Birmingham Childrens Hospital. We met with Theresa, a cardiac liaison nurse who knew about our baby's condition and offered some really useful information, she informed us that his DORV (one of his problems) falls under the 'Taussig-Bing anomaly', I knew there were various types of Double Outlet Right Ventricle and have read all about this particular one so I am happy to put a name to it.
After baby is born he will hopefully stay with me for a few days until he is moved over to BCH. We were shown to Ward 11 which is where he will go prior to his open heart surgery, this is providing he is stable on the Prostaglandin drug (Prostin). If he isn't they will be whisking him straight from BWH to theatre as soon as possible after the birth. Working on the assumption he responds well to the drug he will be taken from Ward 11 to have his op, probably during the first week, the op could last around 4 hours we have been told.
After this we were shown into the Intensive Care Unit (ICU), Alan found it more difficult than me, I suppose I have read every last bit of information I can get hold of about our baby's condition, that's what has helped me face this, Alan is the opposite and has kept a positive attitude throughout without feeling the need to read endless scenarios.
We saw a tiny baby who had had open heart surgery that morning with the label 'Chest Open' covering the incision, this is standard as the heart needs to rest afterwards and will be swollen. Theresa told us they perform around 500+ heart surgeries on babies and children a year at BCH, I asked how many more parents are in our shoes, apparently there are 8 sets of parents facing similar problems with newborns this January.
You hear people complaining about the NHS, not us, the ICU is a bustling environment with 22 beds and people stationed around each bed 24/7. Amazing. We left that room with our spirits lifted, our baby will be given the best care possible.
So...now we are just going to enjoy the final stages before our baby makes his entrance, what a pregnancy this has been. So many mixed emotions, good days bad days...just one hell of a journey...9 days left to go.
Monday, 26 December 2011
23 days to go...
I haven't updated my blog for a while as we have been so busy with the run up to Christmas and the house move...the whole time I have been getting bigger and bigger. The GTT test results were clear so I don't have diabetes...which was great news given that it was nearly Christmas! The actual test wasn't great, I forgot to take Lucozade with me as I'd been advised to by friends but I thought I'd be fine drinking the glucose drink, which I was initially. Then in the waiting room, where I'd been sent to sit for 2 hours, I felt like I'd drunk 50 espressos...not a great look sweating and twitching in the corner like a right weirdo, ended up on the verge of telling a nurse I really did not feel normal but after running my wrists under the cold tap for ages I started to feel better. Had a few growth scans along the way which show baby is on the large side and fluid at a more acceptable level(some good news!)...and most recently an echocardiogram with Dr Miller on the 22nd December. Apparently I'm echogenic...I'll take that as a compliment! It meant he got a really clear view of baby's heart and was able to confirm that it's not going to be a straightforward switch of the arteries locations, the aorta is just too thin and they really need the pulmonary and aorta to be the same size to do that part of the 're-plumbing' process. So it looks like they will deal with the hypoplastic aortic arch first and then decide what to do from there.
Christmas has been lovely so far, it's like the calm before the storm, we're all so excited to meet our baby but at the same time only too aware it's not going to be easy. The house move is all completed, there's just some unpacking left to do now. Grace has a new school to start in Jan and hopefully a new gym too. I have another scan booked for the 28th December and then I guess we wait for 'the letter' to tell us c-section itinerary and times!
Christmas has been lovely so far, it's like the calm before the storm, we're all so excited to meet our baby but at the same time only too aware it's not going to be easy. The house move is all completed, there's just some unpacking left to do now. Grace has a new school to start in Jan and hopefully a new gym too. I have another scan booked for the 28th December and then I guess we wait for 'the letter' to tell us c-section itinerary and times!
Monday, 7 November 2011
Appointments and more appointments!
Not that I'm complaining too much, the level of care we are experiencing is excellent. The main problem is the logistics, still no moving date so care continues to be divided between Northampton and Birmingham. I had an appointment at BWH on 26th October to get the ball rolling up there, I can't recall much about what was said just that the Obstetrician agreed to a cesarean so we have it all booked for 18th January 2012!!!
He also said there is a less than 10% chance of other chromosomal issues although he wasn't specific as to what these were and suggested we talk more in-depth with the cardiologist.
I have O Rhesus negative blood which means I had to have an anti-d injection, I'd rather not say where they administer this particular injection! Anyway, I had it on the 1st November, I told the midwife I was nervous, her reply, 'Oh don't worry it only hurts as it goes through the muscle.' Hmm. That said, it didn't hurt too much.
Next appointment was on the 3rd November, this was with Dr Paul Miller the cardiologist we have heard such a lot about. After a nightmare journey driving cross country and missing trains we made it just in time. A midwife did a full scan of the baby prior to the cardiologists visit, this was hard going as the room was boiling and I began to feel really sick, the sensation of being scanned and lying on my back nearly made me faint. They sorted the air-con and gave me a drink of water, I made a right scene about getting my jumper off, as soon as I sat up it passed and I was fine.
Dr Miller came in to do his diagnosis of baby's heart, I promptly had another episode which again passed as soon as I sat up. Before nearly throwing up on him he managed to gather enough info to confirm Dr Mannings diagnosis. Although he referred to the coarctation of the aorta and added hypoplastic transverse aortic arch, I haven't looked this up but I assume it means not only is it too thin it is also the wrong way around?
Alan and I were sent to wait in a side room with tissues on the table and paintings of lillies on the wall, we have been in a few of these rooms for 'chats' lately.
A midwife, a doctor and Dr Miller joined us to discuss baby.
Dr Miller was very straightforward, he said baby will have the coarctation fixed within the first week of life, which we expected to hear. There is a problem with the following operations for the DORV and TGA as one part of baby's heart they need to stretch to the correct chamber will be too small to reach across so he suspects the best option is to fix a band around one of the valves to reduce flow to the lungs and allow baby to go home and grow! :)
This is both good and not so good, good he may get to come home much sooner than we first thought but not so good as he will still be struggling with the large hole in his heart. I can forsee many sleepless nights, I won't be able to take my eyes off him for a second.
Back to my biggest fear, the chromosomal issue. I asked again what syndromes apart from Downs could be linked to these heart defects, they told us DiGeorge syndrome. I have heard of this before and understand there is a wide spectrum of how this can affect people, from so mild you would never even know a person had it to a few learning disabilities, it's very rare though. However, the word 'rare' doesn't mean that much to us as we already fall firmly into the 'rare' category.
The midwife was happy with baby's measurements, there was nothing else suspect they could see on the scan. Although Alan and I are pretty much at the stage where nothing would shock us it is reassuring to know baby has no other problems they can detect. They did offer me the amnio again, I politely declined.
The amniotic fluid has risen though, enough to make them concerned, it could be something or nothing, gestational diabetes, infection in the womb or this being down to a genetic or chromosomal syndrome. I am due to go to Northampton on the 11th November for a gestational diabetes test(GTT) to hopefully rule this out. I have to fast from 10pm on Thursday night, in the morning they do the GTT, consisting of two blood tests with a glucose drink in between, the midwife confessed the concoction is foul so I'll look forward to that. They will also scan again to see what level the fluids are at...please let them have decreased!!
If it turns out I have this gestational diabetes they will handle the pregnancy differently....what that entails I do not know? If it's because of anything else then there's not much they can do.
I have cut sugar out of my diet all the same and invested in some really healthy/boring food to eat from now on. I was happy with my Jamaican ginger cake and golden syrup cake and really any type of cake, particularly Alans Mums cakes, or biscuits, or snickers and mars...and Twix's....
We have 2 more appointments lined up, one for a routine scan on the 23rd November and one on 22nd December with Dr Paul Miller just to check if there are any changes to baby's heart. We have been given the contact of Kay Dyer, a cardiac liaison nurse at BCH, we plan to arrange a meeting with her soon. Grace will come along too to have a look where babies with heart defects are treated. We think this meeting will benefit all of us, including Grace and start to prepare her for things she may see in January. Dr Miller has warned us in no uncertain terms, nothing can prepare you for seeing your own baby like this.
I had a revelation the other day, after feeling down and depressed and miserably sorry for our situation I decided enough was enough. Up until this point I have refused to buy a thing for baby and not even looked at any baby clothes, it dawned on me if he was born premature he wouldn't have a stitch! So I have bought him some socks! I am on the lookout for a few hats next and Grace is going to pick his first cuddly toy. Alan and I continue to have a sense of humour and are looking on the bright side more often than not.
I'm over the scare mongering and figure the Dr's have to do their job and entertain my morbid fascination with the world of syndromes and chromosomes but I really need to give it up. We won't know till he's here and so, in the meantime whats the point in obsessing over the if's, but's and maybe's!
He also said there is a less than 10% chance of other chromosomal issues although he wasn't specific as to what these were and suggested we talk more in-depth with the cardiologist.
I have O Rhesus negative blood which means I had to have an anti-d injection, I'd rather not say where they administer this particular injection! Anyway, I had it on the 1st November, I told the midwife I was nervous, her reply, 'Oh don't worry it only hurts as it goes through the muscle.' Hmm. That said, it didn't hurt too much.
Next appointment was on the 3rd November, this was with Dr Paul Miller the cardiologist we have heard such a lot about. After a nightmare journey driving cross country and missing trains we made it just in time. A midwife did a full scan of the baby prior to the cardiologists visit, this was hard going as the room was boiling and I began to feel really sick, the sensation of being scanned and lying on my back nearly made me faint. They sorted the air-con and gave me a drink of water, I made a right scene about getting my jumper off, as soon as I sat up it passed and I was fine.
Dr Miller came in to do his diagnosis of baby's heart, I promptly had another episode which again passed as soon as I sat up. Before nearly throwing up on him he managed to gather enough info to confirm Dr Mannings diagnosis. Although he referred to the coarctation of the aorta and added hypoplastic transverse aortic arch, I haven't looked this up but I assume it means not only is it too thin it is also the wrong way around?
Alan and I were sent to wait in a side room with tissues on the table and paintings of lillies on the wall, we have been in a few of these rooms for 'chats' lately.
A midwife, a doctor and Dr Miller joined us to discuss baby.
Dr Miller was very straightforward, he said baby will have the coarctation fixed within the first week of life, which we expected to hear. There is a problem with the following operations for the DORV and TGA as one part of baby's heart they need to stretch to the correct chamber will be too small to reach across so he suspects the best option is to fix a band around one of the valves to reduce flow to the lungs and allow baby to go home and grow! :)
This is both good and not so good, good he may get to come home much sooner than we first thought but not so good as he will still be struggling with the large hole in his heart. I can forsee many sleepless nights, I won't be able to take my eyes off him for a second.
Back to my biggest fear, the chromosomal issue. I asked again what syndromes apart from Downs could be linked to these heart defects, they told us DiGeorge syndrome. I have heard of this before and understand there is a wide spectrum of how this can affect people, from so mild you would never even know a person had it to a few learning disabilities, it's very rare though. However, the word 'rare' doesn't mean that much to us as we already fall firmly into the 'rare' category.
The midwife was happy with baby's measurements, there was nothing else suspect they could see on the scan. Although Alan and I are pretty much at the stage where nothing would shock us it is reassuring to know baby has no other problems they can detect. They did offer me the amnio again, I politely declined.
The amniotic fluid has risen though, enough to make them concerned, it could be something or nothing, gestational diabetes, infection in the womb or this being down to a genetic or chromosomal syndrome. I am due to go to Northampton on the 11th November for a gestational diabetes test(GTT) to hopefully rule this out. I have to fast from 10pm on Thursday night, in the morning they do the GTT, consisting of two blood tests with a glucose drink in between, the midwife confessed the concoction is foul so I'll look forward to that. They will also scan again to see what level the fluids are at...please let them have decreased!!
If it turns out I have this gestational diabetes they will handle the pregnancy differently....what that entails I do not know? If it's because of anything else then there's not much they can do.
I have cut sugar out of my diet all the same and invested in some really healthy/boring food to eat from now on. I was happy with my Jamaican ginger cake and golden syrup cake and really any type of cake, particularly Alans Mums cakes, or biscuits, or snickers and mars...and Twix's....
We have 2 more appointments lined up, one for a routine scan on the 23rd November and one on 22nd December with Dr Paul Miller just to check if there are any changes to baby's heart. We have been given the contact of Kay Dyer, a cardiac liaison nurse at BCH, we plan to arrange a meeting with her soon. Grace will come along too to have a look where babies with heart defects are treated. We think this meeting will benefit all of us, including Grace and start to prepare her for things she may see in January. Dr Miller has warned us in no uncertain terms, nothing can prepare you for seeing your own baby like this.
I had a revelation the other day, after feeling down and depressed and miserably sorry for our situation I decided enough was enough. Up until this point I have refused to buy a thing for baby and not even looked at any baby clothes, it dawned on me if he was born premature he wouldn't have a stitch! So I have bought him some socks! I am on the lookout for a few hats next and Grace is going to pick his first cuddly toy. Alan and I continue to have a sense of humour and are looking on the bright side more often than not.
I'm over the scare mongering and figure the Dr's have to do their job and entertain my morbid fascination with the world of syndromes and chromosomes but I really need to give it up. We won't know till he's here and so, in the meantime whats the point in obsessing over the if's, but's and maybe's!
Wednesday, 19 October 2011
6 weeks on since baby's diagnosis.
The last 6 weeks have flown by. I had such a fantastic response to the blog, thank you to everyone who messaged me, it definitely helped us get our heads around what can only be described as a nightmare. So many people have been in touch to offer support and we have been in contact with people who have faced similar problems and had happy endings, so this has been a major help!
I never thought at the age of 33 I would begin to study the workings of the human heart, my head is full to the brim with medical terms and procedures. I figured the more we know the better equipped we will be when Doctors are explaining details that quite frankly, baffle me.
We went back to Oxford for a follow up scan on the 7th October, this was as we expected, no changes to baby's heart.
The offer of an amniocentesis is still hanging in the air, I must have been asked about 20 times if I want to have this. We are aware there is a higher risk that babies with heart defects may also have other chromosomal abnormalities present at birth but the way I see it is, these are the cards we have been dealt and both Alan and I will love this baby no matter what. If baby does have any other problems then we will face them when he is here, I am praying he is 'normal' apart from what we already know and so far all the signs are good, we have an estimated 1:5500 chance of him having downs, as for anything else we will just have to keep our fingers crossed.
The process to move our care to Birmingham has begun as we have bought a house there, so this stressful episode now has the purchase of a house and all that goes with that chucked in for good measure! Hopefully we should be in before Christmas so we're really looking forward to the move, it'll be a good distraction. The rooms have worked out well as the one for baby has a lovely brand new blue carpet in it!
Speaking of which, I discovered that he will also be quite blue when he is born, this completely freaked me out, BLUE!?? But having spoken to a few people this is the norm with heart problem babies, normal colour will be resumed when he is put onto the drug to keep his heart valves open and working.
Baby's due date is the 25th January and the plan so far is for me to have a c-section slightly earlier at Birmingham Womens Hospital, then Birmingham Childrens Hospital is where he will have his first operation, this will be to fix the coarctation of the aorta. We don't know how soon they will operate at this stage.
He will need to have the DORV(double outlet right ventricle) and TGA(transposition of great arteries) corrected aswell and also have the large VSD(hole in the heart) fixed, these will be done in one go or a series of op's, depending on the surgeon and also on how baby is doing.
We are seeing Dr Paul Miller on the 3rd November for another detailed heart scan at B'ham Childrens Hospital, hopefully at this appointment we can start to organise things and get a proper plan in place.
So that's where we are at right now, looking forward to Christmas with little Gracie and the prospect of a new home. There's not much else we can do other than sit tight, stay positive and wait.
Oh and decide on a name for the little chap, we have one or two in the pipeline...
I never thought at the age of 33 I would begin to study the workings of the human heart, my head is full to the brim with medical terms and procedures. I figured the more we know the better equipped we will be when Doctors are explaining details that quite frankly, baffle me.
We went back to Oxford for a follow up scan on the 7th October, this was as we expected, no changes to baby's heart.
The offer of an amniocentesis is still hanging in the air, I must have been asked about 20 times if I want to have this. We are aware there is a higher risk that babies with heart defects may also have other chromosomal abnormalities present at birth but the way I see it is, these are the cards we have been dealt and both Alan and I will love this baby no matter what. If baby does have any other problems then we will face them when he is here, I am praying he is 'normal' apart from what we already know and so far all the signs are good, we have an estimated 1:5500 chance of him having downs, as for anything else we will just have to keep our fingers crossed.
The process to move our care to Birmingham has begun as we have bought a house there, so this stressful episode now has the purchase of a house and all that goes with that chucked in for good measure! Hopefully we should be in before Christmas so we're really looking forward to the move, it'll be a good distraction. The rooms have worked out well as the one for baby has a lovely brand new blue carpet in it!
Speaking of which, I discovered that he will also be quite blue when he is born, this completely freaked me out, BLUE!?? But having spoken to a few people this is the norm with heart problem babies, normal colour will be resumed when he is put onto the drug to keep his heart valves open and working.
Baby's due date is the 25th January and the plan so far is for me to have a c-section slightly earlier at Birmingham Womens Hospital, then Birmingham Childrens Hospital is where he will have his first operation, this will be to fix the coarctation of the aorta. We don't know how soon they will operate at this stage.
He will need to have the DORV(double outlet right ventricle) and TGA(transposition of great arteries) corrected aswell and also have the large VSD(hole in the heart) fixed, these will be done in one go or a series of op's, depending on the surgeon and also on how baby is doing.
We are seeing Dr Paul Miller on the 3rd November for another detailed heart scan at B'ham Childrens Hospital, hopefully at this appointment we can start to organise things and get a proper plan in place.
So that's where we are at right now, looking forward to Christmas with little Gracie and the prospect of a new home. There's not much else we can do other than sit tight, stay positive and wait.
Oh and decide on a name for the little chap, we have one or two in the pipeline...
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