Ryders story so far

Ryder was born on Sunday 12th April 2009 (Easter).
On the 22nd of December 2008 Ryder was diagnosed with a congenital heart defect called Tetralogy of Fallot (TOF) at his 20 week ultrasound.

We also have a facebook group (see link below)

http://www.facebook.com/group.php?gid=54421280913&ref=ts

This group is for us to share our story with family, friends and anyone who is interested.

We also started this group to help parent's who have just found out their babies have TOF - when we first got our news, we found comfort in positive stories of other TOF children and are grateful to the parents who kindly shared with us.

TOF is a congenital heart defect (a problem with the heart's structure that's present at birth). Congenital heart defects change the normal flow of blood through the heart. Tetralogy of Fallot involves four defects:

-A large ventricular septal defect (VSD) (a hole)
-Pulmonary stenosis (this is a narrowing of the pulmonary valve and the passageway through which blood flows from the right ventricle to the pulmonary arteries)
-Right ventricular hypertrophy (this is when the right ventricle thickens because the heart has to pump harder than it should to move blood through the narrowed pulmonary valve)
-An overriding aorta (the aorta is between the left and right ventricles)
Ryder also has a right aortic arch which is present in 25% of TOF cases.




Ryder's Story so far...

16th December 2008

We were really excited about going for our 20-week ultrasound, a little nervous in case something was wrong, but mainly excited. We were happy to be finding out the gender of bubs and making sure everything was still OK. We did a bit of shopping before the scan and then went to our appointment. Scan was going well, everything was fine until we got to the heart. The radiologist said that bubs was being awkward and she couldn’t get the pictures she needed. She sent us for a 20-minute walk and I drank some more water. When we went back in she still couldn’t get the pictures she needed. She called in another radiologist to have a look and talked to the doctor. By this time I had got a really bad backache and I just wanted to go home. The final verdict was to send us to the WCH to get a second scan. She said their equipment was better, she said it was all OK and she was sure that the heart was fine but she couldn’t confidently say she had seen everything she needed to see. She said not to worry – we should have known something was wrong. We were a bit worried, but we believed her that everything was fine, and we were excited to have found out that bubs was a boy. We went straight to the shops to buy him something blue. On the way home we decided on a name – Ryder Bryce (Ryder means knight, a fitting name for a little boy who will need to be so brave).

17th December 2008

Went to the annoying doctors to get a referral to the WCH. Had to argue with him to convince him that we needed another scan ASAP. Instead of him calling the hospital he sent us with a letter to make our own appointment. Went to WCH straight away. Had to argue with the receptionist as our hospital was the FMC and she said we should go there. She went to find a doctor to look at our scan results. She couldn’t find a doctor and was about to send us back to FMC when Dr M showed up. He looked at our scans and agreed to do the second ultrasound. He argued with the receptionist to find us an appointment – thanks Dr M.

We spent the week a bit worried but were convinced it was just bubs being awkward and nothing would be wrong.

22nd December 2008

Went for our second scan at WCH. Took a while as they had to do all the checks again. Bubs was apparently being uncooperative again, but he did enjoy showing off his winky. I had to lift my bum in the air and wiggle it around to get bubs to move – it worked. Radiologist was looking at bubs heart and chewing on her bottom lip, was worried. Radiologist excuses herself to go and find the doctor, Dr M (he wanted to have a look anyway). Radiologist, Dr M and another woman who is not introduced return. They have a look at the baby’s heart for a while and um and arr and agree and point at things and say “yes, it is defiantly there”. They talk in medical terms that we don’t understand. Next, in come Dr R, the cardiologist (Oh no, something must be wrong – or maybe they are just being thorough). They all um and arr and discuss, we are feeling scared, confused and ignored. Matt is holding my hand – my back is aching again and I am in agony but I don’t say anything as there are two specialist doctors looking at my baby’s heart.
Finally, after being ignored for what seems like forever the cardiologist says “I guess you’ve figured out something is wrong?”
Yes
“Basically, your baby will need open heart surgery at some point”.
Our whole world has just been altered, open-heart surgery, that is really bad.
After our scan we went into the counselling room to speak with the cardiologist. He told us that Ryder has a congenital heart defect called tetralogy of fallot (TOF – yesterday we didn’t even know this existed). He explained the condition in detail and drew diagrams. I am amazed that I haven’t broken down yet – but am defiantly fighting back the tears. Matt wants to cry, but he can’t because I’m not. We are both so strong, and we stay strong so we can listen to the doctor. After he has told us all about TOF he tells us something that nearly breaks our hearts (worse then they already are). There is a 1 in 10 chance that bubs also has a chromosomal defect – either downs syndrome of 22q deletion. 22q is associated with severe learning delays and mental health issues. The cardiologist brings up the topic of termination and invites Dr M in to talk to us about having and amnio to check for the defects.
We agree to the amnio and it is booked in for Christmas eve.
We finally leave the hospital at 5.30pm. We get home ready to tell my Mum and Dad the news. I make it to the kitchen and finally I can not hold it in any more – I cry. I can’t speak, Mum must have thought the baby was dead or something. Matt quickly tells the story and explains. We go to tell Matt’s parents and I cry again. We get home and we both cry a lot – we are not sure what is going to happen and if we will still have a baby in the New Year. It has been the worst, longest day of our lives.

23rd December 2008

Pretty miserable day – crying, researching TOF and 22q deletion (want to know how bad it is). Torn by thoughts of what will happen if bubs has 22q – will we terminate or not? What is more selfish? Letting go of our child because he might suffer or keeping him because you don’t want to lose him? Turns out 22q is a spectrum disorder that can be very bad in some children or unnoticeable in others, makes it harder. I am not sure I could ever make the decision. I feel like a horrible person to ever consider it. How could I ever get rid of my baby boy just because he is not perfect? But how can I keep him if he is going to be miserable? Hoping and Praying that bubs only has TOF and we do not need to make a decision. I am so sorry for anyone who is ever faced with this choice.

24th of December

Am terrified of the amnio – a big needle is bad enough but more scared of the results. Go to WCH, decide that I no longer like this place as it is a place of bad news – want to have baby at FMC as planned but have to have it at WCH. We get completely lost in the hospital and panic that we will be late. Get there in time and talk to Dr M about the amnio and complications. We then go into the room and the radiologist looks at the baby. Dr M and a nurse come in and start preparing. I am terrified and hold Matt’s hand. My belly is covered in yellow antiseptic stuff (joke to Matt later that I have the world’s cleanest belly button). I originally thought that the needle went in my stomach but the doctor points to my pelvis. Panic. Doctor says to keep my hands still and on my chest. I wanted to use my hands to cover my eyes so I look away instead. Needle goes in, it does hurt and is uncomfortable. I sing a silly made up song in my head about a cat. After the needle comes out I make sure I have a look at what amniotic fluid looks like, it is yellow fluid. We go home to rest – I plan on resting for a few days, as I am worried about miscarrying. Cancel all Christmas eve plans, just want to be alone with Matt. Have to endure 5-day wait for results because of holidays.

25th December 2008

Worst Christmas ever. Tried to stay cheerful and asked everyone not to talk about bub’s heart. Was a sad day, not very Christmassy at all.

Spent next few days worrying, distracted by a bout of gastro one day. Lots of tears and internet research. Night before amnio results due was unbearable; Matt fell asleep with toy elephant (Elliot Muffin) that we had bought for Ryder wondering if he would ever get the opportunity to give it to him.

29th December 2008

Waiting for amnio results – ring nurse after lunch, they are not in yet – she says she will ring as soon as they are ready. Waiting, waiting, waiting.
Give up at 3pm and go for a nap. Can not stand the waiting anymore. 4pm still awake. 4.30pm giving up hope of getting results today – then phone rings. Heart is racing. Phone is for me, it is the nurse from WCH with results. Matt, Mum and Dad gather round. Nurse is talking to me, Matt is panicking, he says I have a good poker face as I am not giving anything away. Realise Matt is panicking and give him a thumbs up, all is OK, no chromosome defects – just TOF. Nurse reminds me to book an echocardiogram at 32 weeks. Hang up and hug Matt, then cry with relief. Matt just wants to celebrate. We are so relieved that it is just bub’s heart and our problem is put into perspective – there are far worse things that can happen.

31st December 2008

Not in the mood to party, just want to be alone with Matt and Ryder.

Next few weeks we spend hours researching TOF. Some of the stuff we find is reassuring and some is scary. We are developing a million and one questions. Find support groups on facebook and connect with others who have TOF babies or who have TOF themselves. So many lovely people send us their stories and we are feeling more confident that things will be ok.

23rd January 2009

Plan to give birth at WCH but can continue care at FMC. We are looked after well and are put under the care of a perinatal specialist. She is really nice and has a very reassuring voice. She arranges for us to talk to a neonatal specialist so we can ask some questions about our baby’s care when he is born. She tells us that the neonatal specialist looks and sounds like a mouse, she is right.

27th January 2009

Went to see the mouse doctor in the NICU. It was a bit sad as we are unsure if Ryder will have to be in the NICU when he is born. Asked the doctor about complications and heart baby care. His basic response was “wait and see”. You can’t really tell until bubs is born.

6th March 2009

Am 31 weeks now and am getting nervous about the echocardiogram. We are wondering if bub’s heart condition has worsened. It has been a long time since we last saw Dr R the cardiologist. Will be good to ask some questions and find out more about bub’s heart.

Will let everyone know how the echocardiogram goes soon.


16th March 2009 Echocardiogram

At our 28 week appointment Dr M (our perinatal specialist at FMC) sent a referral to WCH for our 32 week echocardiogram. At 31 weeks we still had heard nothing from either hospital so we rang up FMC to see what was going on. They were very helpful and chased up WCH and found out our appointment was in 4 days. Was wondering when they were going to tell us about it seeing as it was Thursday and our appointment was on the Monday. Didn’t give much notice for Matt to ask for time off work but his boss was really nice and understanding about it all.

Spent the weekend feeling worried and stressed. We were happy to be seeing the cardiologist again and finding out more but worried that things may have worsened since the last scan. I think I went through every single possibility in my head, from “oops we made a mistake, your baby doesn’t have TOF” to “Oh sorry it’s actually a lot worse than we thought and your baby’s heart is unfixable”. Didn’t sleep very well on Sunday night, kept dreaming about the echo.

Went for scan at 3.30pm, got there early and got to go in early. Was a bit disappointed as we didn’t get much of a look at bubs and they went straight to looking at the heart. Was nice that we got the same radiologist as last time. She started the scan and got a good view of the heart, although I had to spend the scan on my side, which got very uncomfortable. Dr R (cardiologist) came in and they began their detailed examination of the heart. Looking at the screen, I am not really sure how they actually can tell so much, it just looks like a blurry black and grey four leaf clover to me.

As with the last scan, the radiologist and Dr M proceed to discuss our baby’s heart in medical terms and I am not sure what is going on. Sometimes I hear the doctor say “That’s good” and that makes me happy. Because I am on my side I can’t really see the screen or the doctor, all I can see is Matt, looking very worried. After a while the doctor starts going on about the ductus (what is a ductus?) and it seems that they are having trouble finding it (turns out the hard to find ductus was the reason we were originally referred to WCH). After a bit of searching they decide to move us to another room with a better scanner, which is good because it means I can move.

In the new room I get to lay on my back. They continue the scan, bubs is being a bit naughty and won’t stay still. I think it is cute the way the radiologist keeps saying “come on baby, stay still, just a little longer”. They finally come to the conclusion that they have found the ductus and the reason it is so hard to locate is because of the right aortic arch. They finish up the scan and we go to the counseling room to get our update and ask the cardiologist some questions.

Dr R is quite happy with how things look and tells us that bubs should make it to 9-12 months before he needs surgery. We finally find out what the ductus is and he explains everything we wanted to know about the right aortic arch. He draws pictures to show how the right aortic arch forms and explains that possible complications could be a ring forming around the food and windpipe, but this is unlikely and if it did occur then it would be fixable.

We ask about what will happen after Ryder is born. Dr R explains that at the birth there will be a special nurse (not sure what kind) in case anything goes wrong. After, Ryder will spend 1 or 2 days in the nursery so he can be monitored closely and we will probably have to spend 6 days in hospital rather than the normal 3 (think this will be a bit boring so hoping I will get lots of visitors). Ryder will probably have some tests and we will be able to discuss what happens from there with check ups and surgery. Dr R said Ryder will probably have monthly check ups before surgery. WCH will organise everything for surgery including referrals, flights and accommodation for the trip to Melbourne, which is where the surgery will be done.

So things went quite well at the scan (no need for all the worrying), we don’t need to see the cardiologist again until after the birth and can continue on our care at FMC with Dr M who will arrange a tour at WCH birth center and our transfer.

Will post any new news as it happens, hopefully none until we announce bubs arrival.


A very nice Easter surprise

EDD: 12th May 2009
ACTUAL BIRTH DATE/ TIME: 12th April 2009 9.56pm
GESTATION AT BIRTH: 35+5
SEX OF BABY: Male
BABY NAME: Ryder Bryce
BIRTH WEIGHT KGS/LBS: 2.79kg / 6lbs 1oz
HEAD CIRCUMFERENCE: 34.5cm
LENGTH: 49.6cm
HOME OR HOSPITAL BIRTH: Hospital
TYPE OF DELIVERY: Vaginal
LENGTH OF LABOUR: 10 hours
PAIN RELIEF: Pethidine and Gas
BIRTH STORY:
Moved house on Good Friday (didn't do much but carried light boxes up the 3 steps into our house). Every time I climbed our 3 steps I could feel my hips getting achy so I thought maybe they were starting to soften. By Friday night I was aching from my hips down and couldn't sleep.
On Saturday morning the pain was just back to my pelvic area and I realised it was coming and going. Decided to time how long it was between it hurting. 10 minutes and pretty consistent. That's when I thought I must be getting Braxton hicks. Later that day the contractions were coming every 7 minutes.
On Easter Sunday I got up and the contractions were coming every 5 minutes (always planned to go to hospital at this point), they were quite painful but I still thought they were Braxton hicks. Wondered whether I should go out for Easter breakfast and lunch. Decided I would be fine and went. Was in a bit of pain and by midday they were coming every 3 minutes (timed this as the start of my labour). Left lunch early as I decided it might be a good idea to get checked at hospital (although I was sure they would laugh at me, tell me they were Braxton hicks and send me home). Rang hospital and explained that I thought I was having contractions and that bubs was a heart baby. She said I should come in as that way they could be prepared for a heart bub.
Got to hospital about 4.30 and they hooked me up for monitoring. After an hour the midwife said, it looks like you’re in labour, I'll just get the doctor to see how dilated you are. Doctor checked and said I was 4-5cm and was having a baby today - both Matt and I were in shock.
Was taken up to the delivery suite and met my midwife who was lovely and laboured on drug free until 8.30 when the doctor came in to check how dilated I was - 7cm. She decided to break my waters to hurry up the process as she figured bubs would get better care if he came before midnight. Once this was done the contractions came on faster and more painful, I could not handle it anymore and asked for the pethidine, tried the gas while the pethidine kicked in and decided I liked the gas a lot.
About 9.30 I decided to throw a hissy fit and declare that I could no longer do this and wanted to go home although deep down I knew that would not help. At 9.40 I decided I wanted to push and was very angry to be told I couldn't until they checked if I was 10cm. Luckily I was or else I may have killed someone.
After a bit of pushing (guided by a very bossy midwife who kept telling me push harder) little Ryder was born into the world and he was perfect.
I thought all up the labour wasn't too bad, just the last couple of hours and was definitely worth it as I love my little boy sooooooo much
Ryder was checked straight away by some doctors and a neonatal nurse and then he was given to me for a cuddle. He was then taken up to the NICU and Matt left me to go with him. After I was sorted out and cleaned up the midwife took me up to the NICU for a quick visit. He was doing well and his oxygen saturation levels were good.
At midnight while we were asleep he had an echocardiogram and doctors were quite happy with how he was doing. Talked to the cardiologist in the morning and he confirmed surgery would happen around 9 months.
Spoke to midwife in NICU and she explained about how the hole in his heart was large enough for the blood to mix well and was actually working to his advantage as his oxygen sats were at 100%.
Ryder stayed in the NICU for a couple of days and then was moved to the SCBU (Special Care Nursery Unit).
He is doing really well (which has surprised us) and the cardiologists are quite happy, the only thing keeping him there for so long was because he decided to come early and needed to get the hang of his feeding.
Matt and I will be going to stay with him Mon/Tue and will bring him home Wed which we are really looking forward to.


First Cardiology appointment

8th May 2009

Went to the hospital for Ryder's first cardiology appointment. Was sad sitting in the waiting room knowing that we would be back every month until surgery and probably every year after that. Was also sad looking at the other parents and their children, wondering what they were going through. Saw a teenager waiting for his appointment and thought, that will be Ryder one day waiting for his yearly checkup.

Before seeing the cardiologist the nurse weighed and measured Ryder- he is doing well and putting on weight.

Was happy that we got to see Dr R - the doctor who originally diagnosed Ryder with TOF (saw so many different heart doctors while in hospital). Dr R asked us some questions about how Ryder was doing - we were happy to report no change in colour (turning blue) or crying fits. Doctor was also happy and asked if we had any questions. We asked about how puffed he seems to get when feeding and he said it could be to do with how much blood is going to his lungs but said it was ok as he was putting on weight and looked well. Dr R showed us the knee to chest thing that we have to do if Ryder has a TET spell (turns blue) and explained (again) about calling the ambulance.

Appointment went well, will see the doctor again in 1 month and if things keep going well we will only have to go every 6 weeks until we are booked in for surgery.

As for how we are feeling about our heart baby - we love him so much and he is doing so well - I look at him everyday and can not believe anything is wrong and that eventually he will need open heart surgery. I can't help but worry about him though and am scared that something will go wrong (although I'm sure all new parents worry). It was a scary moment when I realized that I now have two boys in my life that I couldn't live without (Matt and Ryder - I love them both soooo much)

Cardiology Appointment Two – 12th June 2009 – Ryder is 2 months old

Arrive at WCH early to avoid peak hour traffic so we go and have some breakfast. We sit in the cafeteria with Ryder wondering how the appointment will go.
15 minutes before his appointment we head up to the cardiology department (somewhere I am sure we will get very used to).
We check in and wait for the nurse. She calls us in quickly and Ryder is weighed (4.51kg), measured (55cm) and has his oxygen saturation checked (98%).
We then head back into the waiting room. We are called in by a doctor (not our usual one). She explains that she works under Dr R and she will check Ryder and then Dr R will come in and have a look.
She does the usual stuff, checks his heartbeat, pokes around at his liver. I get a bit worried when she asks me to hold Ryder as she can’t get a good feel of his liver (thoughts of what else is wrong go through my head), but his liver is fine. She is also concerned about his snuffly nose.
She goes off to find Dr R who is busy and explains to us that he will be in soon. We wait patiently while she googles TOF on the internet – we think perhaps we must know more about TOF than she does.
Dr R eventually comes in and does the same checks and suggests saline drops for the snuffly nose. He asks if we have any questions – we say yes!
When is the best time for surgery? 9 months
What will the scar be like? It will fade with time, but grow as he grows.
Will he go down hill with time? Hopefully not, but it is a possibility, but it would be a gradual thing.
Dr R again tells us that Ryder is doing really well and we thank him for his time.
We book in for our next appointment – he does not need to come back for another 6 weeks – yay, another good appointment!

3rd Cardiology appointment

Thought I better keep this up to date:

Got to our appointment and the receptionist had put the wrong child's code in the computer so it looked like Ryder didn't have an appointment - luckily he was written in the diary.

Had a new nurse weigh and measure Ryder - she was very nice and Ryder liked her a lot - wouldn't stop wiggling and talking to her. She thought he was very cute :o)

Ryder weighs 5.59kg (put on a kilo since last appointment) and measures 59cm. His oxygen saturation levels were in the high 90s as usual. Was very happy and proud of him.

Waited in the waiting room for a bit. While we were there I told Ryder how proud of him I was and gave him a kiss on the head, unfortunately had a bit of static electricity and gave him a zap which he didn't like (he cried - poor bubby).

Had the same student doctor as last time (we call her google girl). Google girl also had a student doctor working under her today.

Google Girl checked Ryder out and then the "student - student" doctor checked Ryder - she left his winky exposed and i was thinking the whole time it would be funny if he peed on her - lucky for her he didn't.

Dr R (our cardiologist) came to have a look and was happy with how everything was going. We were happy to be told that if Ryder was to go down hill now he would be strong enough to have a full repair.We also found out that at about 6-7 months Ryder will have another echocardiogram done and the results will be sent to Melbourne so they can start booking him in for surgery.

I am dreading the surgery but half looking forward to it being over and us being able to move on and stop worrying so much. Ryder's heart is always something that is at the back of your mind, every time he cries, you wonder if he will stop or will he have a tet spell? You are constantly wondering if his hands and feet are blue or not? there is always the thought that maybe instead of taking him for a walk in his pram tomorrow, will you be taking him to the hospital. I'm sure most Mums worry about their babies but I think heart Mums and Dads worry differently - I hope that after Ryder has had his surgery I will be able to worry like a normal Mum - but maybe heart Mums never do?


4th cardiology appointment

Friday 28th August 2009

So was very worried about going to this appointment as have been paranoid lately that Ryder's hands and feet look blue at times.

Had our routine breakfast in the cafeteria and then headed up to cardiology. Had our usual nurse who did weight and length (6.1kg and can't remember height, maybe 63cm). Oxygen saturation levels are 97% - great.

Didn't get google girl (student doctor), just doctor R who seemed in a very good mood today.

He had a look at Ryder and said he looked great and must be doing well.

He had a quick check of his heartbeat and was happy.

He asked us if we had any questions, as usual we did:

Should we be worried about Ryder's feet and hands being blue sometimes? - Dr R said it is nothing to be concerned about and it is just a normal baby thing - he said most parents don't notice it because they obviously aren't looking out for their babies turning blue. He said it was completely understandable for us to be worried, so I didn't feel too silly for worrying about it.

Can Ryder go on holiday? (we are planning a trip to Sydney as we don't want Ryder's first holiday to be for surgery) - Dr R said that it was fine, he probably wouldn't recommend going anywhere out of Australia that would not have good hospital services, but Sydney is fine. He said that we didn't need a medical letter because if anything did happen, Sydney hospital would handle it.

We also discussed the best time for surgery. Dr R's opinion was that it is better to do it around the 9-12 month mark as waiting any longer is pointless as weight gain is minimal (eg only a kilo or so different between 12 months and 18 months). He also said that he didn't like it done any earlier - but doctors are continuously debating when is the best time. He said that the only thing that would delay it would be if swine flu broke out badly in melbourne or if something happened to one of the surgeons. He also said that they would avoid us having to go at christmas as he will be 8 moths at that time. He also said that waiting longer would be emotionally stressful because of the waiting so I am glad that they will stick to 9-12 months mark.

Dr R also told us (out of interest) that if Ryder went untreated he would probably be fine til about 3 years old and wouldn't live past 6 years old - lucky it is treatable and we live in a fantastic country with the capabilities to do so.

So our next appointment, Ryder will have his echo done and the results sent to Melbourne requesting a surgery date - will be good to get a date.

After our appointment we talked to the nurse about going to Melbourne and she explained that they sort out all the flights and accommodation which is fantastic. She also gave us some info about it all too.

So another A+ for Ryder - Yay!