life at home

It was two weeks ago that Oscar was discharged from Ward 23B and life on the outside has been going well! Oscar's recovery has been straight forward and it's hard to imagine he had open heart surgery only 3 weeks ago. He is happy in himself and gaining loads of weight (250g this week) which is keeping us busy and up alot at night. I had coffee group yesterday with my ante-natal class and it seems all our babies are going through a feeding frenzy again and we all feel like we have new borns in the house again - so good to know Oscar is just doing normal baby stuff. It's still amusing to us when he cries for food and gets very grupmy if we take too long to get the bottle in his mouth as he had never displayed that frantic need for food that a healthy baby does, before the operation. Now he is a healthy baby and - subject to verification from the cardiologist in a couple of weeks when we go for our big follow-up clinic appointment - he no longer has a heart condition!!!

We meet with the cleft team next month to find out what their plans are for his next round of surgery and until then we have no idea if his lip repair will be done this side of Christmas or early next year. At least we are well versed in preparing for an operation and it certainly doesn't feel as daunting as it once did.

Oscar moved into his own room last Friday and into his new cot. It's another exciting milestone and he seems to be coping well (as are his parents, especially after he slept for about six hours last night!).

It's hard to explain what it was like being at Starship but we reflect everyday on what an amazing and special time it was (albeit one we'd rather not have had to go through in the first place). We met some amazing and special people and really got to appreciate how lucky we are to live in a country with a great public health system (ok we know it's not perfect) and to see what an amazing place Auckland Hospital is. Brennan and I both wanted jobs there by the end of it - there is always so much going on and there seems to be no end of opportunities there; good people who really seem committed to their work and to be doing something they love. Not to mention what a nice place the new hospital is. We also really appreciated that special time with Oscar - in our bubble where there wasn't an outside world of shopping, cleaning, cooking etc... just us and the ever opening door of nurses, doctors and visitors. Mainly we feel lucky to have shared the experience with the other families on the ward.

Better run, little boy just waking from his sleep and if I don't send this now another day will go by.
Happy weekend to all.
xxx
fi

pre and post op photos

Oscar saying goodbye to Monkey

Oscar in his cot on the way to theatre

Post Op, back in Ward 23. Top to bottom: oxygen supply taped across face (which wasn't required much after about four hours post-op),
the two white dots on wires on his chest are monitoring heart rate (there were also an O2 saturation monitor and respiratory rate monitor),
obviously, the scar!,
beleive it or not the two plastic things in the square plastic bag in the middle are connected to wires which are connected to his heart directly - they are pacing wires in case his heart became irregular or had faltered after closing the chest (electricity, ay!?) - the pacing wires are attached inside the chest cavity during surgery to the outside of the heart with 'very loose stitches' (I know, huh!?), so that they can be removed without having to 'go back in',
Older Kids who have this done - the pacing wires removed while they are awake and conscious but probably on morphine - say it is a weird feeling - no kidding ay?,
he also has lots of pink stains on his skin from the pre-op antiseptic wash,
and under the big plasters just above the sheet are the real gross ones - don't read on if you are squeamish! - they are flexible plastic drain tubes which are placed in his chest cavity during surgery so that any fluid which gathers post-op comes out instead of sitting round and making trouble,
Yes, the flexible plastic drains and the pacing wires are removed viscerally and literally with a bit of a yank - by a nurse! - after the stitches holding them in place on his skin are removed...

And yes, looking a bit groggy!

Reunited with Monkey and sleeping soundly!

Chilling out in the HDU cot

Super Starfush Man returns, albeit with one hand weighted down - its just protection for the i/v line they put in so they could remove all the operation day anaesthetic ones which were in horrible places (important step in recovery), but still give him morphine if required.

Back in his hammock on post op day 2,3 or 4 - tubes and all - cause he wouldn't go to sleep in HDU

we're home....

Oscar got discharged from hospital this morning! He is now sleeping soundly in his hammock and Brennan, Sal (sister) and I are on a house cleaning mission.
Needless to say we are very happy to be here... will write later cos I just look like I'm mucking around and I'm supposed to be working!

Fi

looking good

Oscar got a good report from the doctor this morning and we are just waiting for some patients to be sent home today so that we can move out of HDU back into a side room!
Our nurse removed Oscar's oxygen supply today and also the lure in his arm, so we now just have the feeding tube and some electrodes on him.... a lot less paraphernalia than before. He hasn't had any morphine since 9 last night and is still uncomfortable when peeing, but it seems to be on the improve. They think it is just some trauma from having the catheter removed. 
Today it seems that we almost have our boy back. We've had smiles and giggles and lots of waving of the superstarfish arms. All in all the smiles have returned to our faces and I think we can imagine going home soon.


We are having trouble uploading photos at the moment, but will get some up asap.

Monday Monday

So we're back into the bustle of the working week and more staff on the ward than on the weekends - Monday mornings are busy! Oscar had a good night and behaved well for his nurse. We too had a good nights sleep and feel a little more human today.
We are still in HDU as Oscar is still on quite a bit of morphine due to pain when peeing so bit of a hold up but hopefully they'll get to the bottom of that problem today... no further mention of it being a hernia so that's good. Otherwise he appears more relaxed and happier than he has. No problems heart wise so we no complain!


Oscar woke up this morning just before his eight o'clock feed. Though not his classic 'smiley and chatty' self, he seemed very much himself - very calm and happy to just look around at things and not the kind of clouded over Oscar we have been a bit worried about all weekend. He still obviously has a sore and cloggy throat from the surgery breathing tube (which was taken out shortly after the operation) and the feeding tube, so the chatting tends to come out as gurgling anyway. But he had a really good scream after breakfast, and in typical fashion all the medical faces poked their heads in and said it was good for him!... which is good, because there wasn't anything we could to stop him. Eventually he slipped back into a morphine stare and then sleep... but much less morphine now of course, and much more peaceful recuperative sleep. 


Some more wires coming out of/off our son before next feed at 11am so we better get back.
Happy Monday folks.
xx

update

Oscar is still in HDU and for the most part is doing well. Heart wise all is going well however he is still needing quite a bit of morphine as he is a lot of pain when going for a pee. We are not sure why and are growing a little impatient to find out - they are running some tests and it could possibly be a hernia, but that's only speculation at this stage.
Anyway I am just away from him to take a shower and get ready for family visits so that's it for now, but will write later in the day.

Back in Ward 23B

Hi! Oscar is out of PICU and back in Ward 23B (Heart Ward) in the High Dependency Unit - HDU, which is a room on the ward with a few more nurses and machines per square foot. (Next step in a few days will be back into a "side room" - ie our own room like we were in before).


He freaked us out a bit yesterday in PICU. He was more awakeish and restless than we had expected and the staff just weren't our good mates on 23B, so we were glad when he was transferred this morning - after only about 18 hours in PICU (we had expected 48 or so). He had been extubated (breathing tube removed) last night as he started pretty much breathing for himself quite soon after arriving in PICU - but he is still on a bit of oxygen just to help him out. So before leaving PICU he just needed some drains removed and little stuff and he was ready to go...


Needless to say 23B welcomed us back with champagne and chocolates, with seven of the top surgeons on hand to congratulate Oscar in person - they are so good to us - before settling us into a dark corner of HDU where he is currently sleeping soundly. OK well there are some lies and hopefulnesses here but you get the picture.


Brennan.


I'd just like to add that we wouldn't have been writing with such good humour this morning.... just so you don't think we've breezed through this without skipping a beat - here is the truth... 
It's been a terribly hard couple of days and I have had to leave the room a number of times to catch my breath and to let the nurses do some of the nasty things. It goes against every instinct to just standby and watch your defenseless baby go through all of that and I truly hope yesterday will remain the toughest day of Oscar's life (fullstop). 


It was like a weight had lifted as soon as we got back to the ward today, he calmed down almost immediately and I certainly did. The hardest thing for me was that he didn't close his eyes at all in PICU even though he was definitely out of it most of the time and he just looked really scared and unhappy, now he has eyes closed and is enjoying having his hand held. We even had a small first smile for Dolly one of the nurses (who is a baby whisperer) when she came to visit him tonight!!!!! Lets hope there are many more of them in the coming days. 
We continue to gather much strength from the other amazing parents, children and babies who are on this journey with us and can't imagine doing it without them all. We will be a bit lost when we go home (but not for long).
Thanks for the visits, calls, texts, emails and food (you did a great job Matt and the card wasn't even inappropriate for a change).


Fiona




    

All patched up - we finally had our day today.

Oscar Noah Rigby's surgeon is very pleased with the way his surgery went this morning! He said there were four major things the surgeons worry about with this surgery and I can't remember any of them - but I do remember that they were all ticked off as done and dusted!! importantly, his heat rhythm, which can be disrupted by the surgery, has re-established well, and according to post surgery checks the patch is doing a great job and there is no residual leaking around the edge.


So, we had to have him nil by mouth since early this morning, wheel him down awake and grinning and hand him over - we were pleased to have had some experience in all of those things... 


Once the surgery was underway we made our way into the city to pass some time, until we got the call from the nurse that he was off bypass. Then a bit later, from the surgeon reporting, and then an invite from the PICU nurse to come and see him... He is still cute, thank goodness!... his scar is smaller than I expected, there are lots of lines in and out of him, but he has already started stirring and moving, to our surprise. 


So by all reports he is doing great, and we are waiting to check into our new accommodation in the Family Rooms, so we can have a sleep and a little recuperate.


love and thanks for 'keeping' in touch with us through this, even if it has been through this rather odd medium - we have felt you all checking in to read up on our status!

it's true folks, you can be cancelled 4 times...

If you've seen the news, you'll know there was a car crash in Kawerau yesterday... those 3 kids are now in Starship Intensive Care, so we have been cancelled again. 
We're calming down now, but we had our angry pants on for the past couple of hours. Angry that 3 kids were in a car without their seat belts on. Angry that they didn't tell us till 8.30 this morning and made us starve Oscar from 2am when they must have known hours ago that the 
PICU beds were full... No, it is not the surgeon or the cardiologist or anesthetist that we depend on to get into surgery - the biggest hurdle which has stopped us three out of four times is the availability of a PICU bed and PICU nurse - A PICU nurse is dedicated to only one child in the hours and days after surgery... Angry that I almost gave myself a migraine this morning with the stress.
Oscar has been fed now but we're going nil by mouth again from 9am as there is a slim, slim, super slim chance that they will do him this afternoon... otherwise they try again tomorrow....
so since this is a family show I wont put down all the swear words I'd like to and I'll go get some fresh air instead.

please let it be tomorrow

good evening,
All systems are go for the morning, Oscar should be called for around 7.30am. Meet with his new surgeon this afternoon, his name is John and he's from NYC, studied at Columbia University and now calls Auckland home. He was a great pains to tell us that it is a real honour to work here as part of the Greenlane Hospital Cardiology Services (which is now based at Auckland Hospital, but much of the pionnering heart transplant work etc happened out of Greenlane). It has the highest international reputation and is one of THE places a cardiac surgeon wants to work in the world. Aren't we lucky!

I'm just dog tired tonight and was really over it all today, but I've come home tonight and left Brennan and Oscar in our other home at Ward 23B. It's nice to be here with a glass of wine knowing that no one is going to burst through the door to my room all night long.

We are well practised at this getting ready for surgery gig now, but to be honest I'm not feeling too flash about it tonight... a good nights sleep should sort me out though and we look forward to letting you know that it's all taken place some time tomorrow afternoon.

Fiona

ps Oscar now weighs 5.12kg, he put on 70g yesterday and 50g today... he's starting to look cubby and it's delightful.
xx

could be Wednesday.. 4th time lucky???

We have been updated and Oscar is down on the surgical list for Wednesday this week - as we all know it's not a definite, but that's what they're working towards at this point. 
Our friends from the ward sent their 2 week old downstairs for his op this afternoon, they are currently sitting up here at Muffin Break in the hospital waiting for the surgeon to call to say they've finished... we know he's off the by-pass machine and hopefully will be in ICU shortly so they can go be with him. They are holding up well and we hope to be sitting with them in ICU on Wednesday evening!


In the meantime I am grateful for having all of this precious time with Oscar where I don't have to get him in the car and dash off to one appointment or another.


Fingers crossed for Wednesday folks.

no poblem!...

So I might have been a bit drunk last time I (Cat-Daddy) posted... which might have been the long one with the cat photos...

But today I am not - I am at TVNZ 'working'.

No surgery yesterday as many of you will have heard by now. The only thing that could have got in the way was an emergency, and it did... an adult heart which had been tranpsplanted into a new adult body did not respod and the surgeons had to keep the adult heart's new body on bypass... until they could get the adult heart to start doing its thing in its new environs.

Bypass is when the heart is stopped and the surgical team are using multiple devices to extract blood from the body, thin it, oxegenate it, warm it, thicken it again and return it to the body. When Osacr is in surgery we will get an 'off bypass' phone call letting us know when Oscar's heart is all go again after being on bypass, and the more complex matters in the surgery have been completed.

Anyway, no surgery yet and still waiting for the doctor's regular rounds this morning... and still waiting to find out when our next chance for surgery is - we can now call them 'chances' rather than 'bookings', I think!

Standing Oh So By.

... as we say to Oscar when he is a lil grizzly, 'no poblem'.

not today... maybe Sunday

Surgery has been cancelled again today - the morning booking was taking alot longer than expected so our surgeon couldn't get into the theatre. They told us about 2pm that we wouldn't be going in, so quickly got the bottle into Oscar's mouth as he had been nil by mouth since 9am. Brennan walked alot of km's around the hospital between midday and 2 trying to keep him asleep.
The surgeon came to see us to say that she is trying to get a team together for Sunday as she is off for the school holidays next week and Oscar is her baby and she'd prefer not to hand him over to the other surgeon... again it's mainly dependant on having staff and space in PICU but she said 95% it'll happen Sunday!
We are currently in an awful cafe on K'rd to get internet access and hopefully the next stop is a glass of wine at Verona and then back to the hospital to give the boy a feed.
I know all of you who love Oscar are finding this wait tough as well - but hopefully we'll get our day on Sunday and we can all breathe easier.

xx Fi and Brennan

Acclimatisation

One of our fellow parents on children's heart ward 23B noted that having a surgery day 'practice run' can be good...

So low and behold, the stressed out parents of last night (thinking Oscar had surgery coming up today), are tonight, more relaxed, sleeping, and generally feeling as if we can cope -  because we know a lot of what is to come, emotionally and procedurally... of course we have done all this before, now - of course the surgery didn't go ahead today, and may not tomorrow, but we have now had 1 x the night before surgery, and 1 x waking up on the morning of surgery and trying to pretend is is not really happening, while we go about the business of preparing our delightful son for his big event!... so we are old hands. (   )

So hats off to Rebecca (who provided the 'practice run' perspective), and of course Joseph who has had one false start for surgery before the surgeons told them that they would have to wait (just as Rebecca's other three kids and Dad are waiting at home) because they had only performed that particular surgery a small number of times, and only on babies in worse heart failure than Joseph and therefore with bigger hearts... and they wanted to wait until his heart failure was worse and his heart bigger... !!! (three exclamation marks means utter consternation)...

and to Justine and Lucy and Dad Don who turned up today from Hastingsish I think, leaving the farm and the other kids, in good hands no doubt...  and who (Justine) is up most of the night trying to breast feed her not so well new Heart Kid (about 8 days old, I think), who always says hello and chats, even though we all only introduced ourselves tonight (I was calling Justine 'Lucy', the name of her baby, cause I read it on the door of her room - the name on our door is Oscar Rigby, so probably should have picked that one. Duh!)

So there are blessings in having the surgery delayed, and there are lovely people with whom we share much of the journey (we will tell you about our nurses when we have decided who is our definite favourite!, there are three in the running, and we will try to read out the names in the correct order - that is to start with the third favourite, at the bottom of the list) ... Though it must also be noted that some parts of other patient's journeys we do not share in - Kat is from Dunedin, is about 22, is at Starship on her own looking after her baby while her partner and other child are at home - and she has been in the hospital for 5 months!

So if we have not said it before, once again we feel lucky to have the support we have, to have each other, to live in Auckland, for Oscar to have (as the cardiologist put it) 'the best one (congenital heart defect) to have', to not have too much financial pressure at this point in time, and to be on Starship's doorstep... We are also enjoying not having any other medical clinic appointments - as Fi said, we are kind of learning what it would be like to have a new baby at home, each day simply being devoted to Oscar and his well-being rather than the general running we do and love with Oscar, albeit with nurses coming in for blood pressure, heel pricks, multiple things connected to him, oxygen saturation tests and generally just because they are smitten with our son.

AND THIS IS one of OUR CATs, BELLA, she is a struggling alcoholic and she is really cute and we miss her when we are in hospital, and she says she misses us but, I'm not sure if it is not only about food.

and this is mamma-cat snuggling the cat-mamma

So surgery tomorrow, pobly. But if not, we are in good hands.

Huh?

The surgeon came in to visit this morning at about 8:30, to talk to us about the surgery and sign consents etc. She is really lovely and basically the best in the world... she said we should expect to go down to surgery earlier than we expected at 1200 or 1230...

Then she came back at about 0910 and said Oscar had lost his spot to a more urgent case...

Our little boxer reached his fighting weight though this morning, weighing in on fight day at 5010 g, after match officials had said they had wanted him to reach 5kg for the surgery (though this had fallen into less significance)... so all this time he was just managing his training load!

So Elizabeth said hopefully they could fit him in tomorrow afternoon... or if not then they would consider doing his surgery over the weekend - we do not know how precedented that would be but obviously that would be great too... anyhoo, just relaxing now, much more than we would have been otherwise!!

Introducing, in the blue corner, stepping up for the super duper babies extra fly weight commonwealth gold medal fight for an operation slot, weighing in at at 5010 folks... Oscar "The Oscanator" Noah:

MCU sparring with camera

Dancing, like a butterfly:

the big day draws near

So we have almost made it to the starting blocks! Oscar is due in surgery at 1pm tomorrow if all goes according to plan. We have had a run through of what's involved this afternoon and a visit from the anesthetist to explain what he has to do etc, we will hopefully get a visit from the surgeon in the morning before she goes into theatre. I wont give you the gory details of what they do to him, suffice to say I wouldn't wish it on anyone! They should be about 5 hours with him which includes getting him prepped and doing the heart bypass, the repair itself only takes about an hour.
I was feeling very sick and stressed about it this morning as we were waiting all morning for the doctor's to do their rounds.. they didn't get to us until 11 and when they did, they didn't say anything about his surgery! A nurse came and told us at 1pm that he was on the list for tomorrow, then I felt heaps better..... but also worse!!!!

Brennan is having the night with him tonight and I am home to check on the cats and get a good nights sleep. We will be able to sit with Oscar once he's out of theatre and in intensive care. They are going to give us a tour in the morning so it's not too overwhelming when he gets there with all his tubes and lines and battle scars. We're still not sure where we'll be able to stay while he's in ICU but all will be revealed in the morning!

Here's a cute one taken today - that's his feeding tube up his nose (which he managed to get out yesterday).

Let me know if you have any questions - you can add a comment, I'm sure there's lots of stuff you'd like to know. And we will let you know as soon as we can how he's doing - but feel free to text me. 

One more photo cos I couldn't resist it.

We know you are all thinking of us, especially the wee man.
Fi

Surgery update

We are still living here at Starship (well one parent at a time and one Oscar). It’s been a testing few days but there may be some light at the end of the tunnel… rumour has it that they are planning to do Oscar's surgery on Thursday (today is Tuesday, so hopefully they’ll let us know soon). We should find out in the morning, but I’ve been saying that for a few days now….

Even if they tell us in the morning that they have it scheduled for Thursday, it is subject to change – mainly a bed being available in intensive care and being bumped by a more urgent case, so we’re on tender hooks. 

So far we know that after the surgery he’ll spend one or two days in intensive care (ICU) and then a few more days in the high dependency unit (HDU), which is part of the heart ward we are in now. During those times, Brennan and I can stay in a room in another part of Starship, then when he is well enough to go back into his own room we can return to the routine we are in now, where one of us can stay overnight with him.

Oscar is doing his best in the circumstances and continues to gain weight, albeit slowly. We had a frustrating day yesterday where he vomited a few times and so failed to gain much weight due to the high calorie formula they were trying him on - ironically to put more weight on (I think the phrase is - "Aaaaarrrgghh!!??!!??!").

We are hoping for smooth sailing tonight though as I am feeling the effects of the four pj and sheet changes last night!

It’s hard to keep the blog up to date with very limited internet access, but we will do our best! Fingers crossed it’s all systems go this week… and you will be the first to know... possibly even before us. 

Sounds like tomorrow is going to be tough day - firstly hopefully finding out more, but they are planning to do pre-op tests and preparations on Oscar Noah and going through the consents and stuff with his parents... so another day of the pocks and prods, the interupted sleeps (for all of us!), the out of time feeds, and general palava of being in there, and right next to the ward's reception desk. 

So for the next few days, please feel free to call but we need to keep visits to a minimum, and we will keep you posted.

love

action!

In short:
We are now in Starship Hospital with Oscar.
Surgery likely to be next week (but date not set).
Only one of us can stay with Oscar - Fi so far...
Looks like we are in til the surgery - though the admission was for 24 - 48 hours!
Then Oscar will remain in various Starship wards for 7 - 10 days recovery.
Oscar is cute.

Oscar was admitted to Starship Hospital yesterday. It was a planned admission and was to be a 24 or 48 hour stay so they could administer a medication that lowers his blood pressure and therefore eases cardio-pulminary congestion. But of course they have to monitor this very closely and gradually increase the medication to reach the right dose...

Anyhow, Fi always thought that 'we' (mostly her and Oscar) would end up staying in Starship until the surgery. This likelihood was confirmed yesterday... one the Docs said sending Oscar home now was unlikely especially as he has a nasal-gastric feeding tube which we would have to be experts in if we took him home.

Anyway, upshot is, for the moment we have been told that the surgery will probably be next week, Oscar will (almost definetly) stay in til then, and we have pretty much moved into ward 23B with hammock, bouncey chair, mobiles, pram, snap and go wheels, our own food especially!...

... Also, Oscar is really cute, and he wanted me to add that he loves everyone... (I told him maybe not including Rodney Hide; he said Yep, Rodney Hide included... you can lead a horse to water ay? but you can't make him drink, unless you put down a nasal-gastric feeding tube).

Oscar having a 'dream feed'

Starfish to Starship

I took Oscar back to Heart Clinic yesterday (Tuesday) as I wasn't happy with his progress over the past week and thought he was struggling more than before, so didn't want to wait for another week before the dr's saw him.

They agreed that he wasn't doing so well and basically said the time has come to plug that darn hole! We are being admitted to the Heart Ward at Starship tomorrow morning (Thursday) for 24 to 48 hours so they can put him on a new medication which should help take the pressure off his system a bit - not sure what it is, but it helps the blood be absorbed in the body and takes the pressure off the lungs (I'll try to get the name next time, so I can give a proper explanation). This medication can lower blood pressure which is why they have to give it to him in hospital where he can be monitored.

They'll try him on that for one or two days and then decide if we go home or stay in til the surgery. They are hoping to fit him in next week but will depend on how he's going and if there are more urgent cases that require the surgeons attention! I was told that his date was set for 4th October, so we know it will definitely be in the next 2 weeks.

The main problem we have at the moment is that he is eating less and less - getting too tired to get through his bottle and is not gaining much weight now. I will be glad to have the doctors and nurses keeping an eye on him as it is starting to feel a bit stressful at home. He is still in good spirits though and we have lots of chats and giggles throughout the day and he still looks nice and healthy.

I get to stay in the ward with Oscar and Brennan can be with us during the day and home to the cats at night. We will keep you posted and thank you for all the love the support.

Fi

13 weeks / 3 months

So, the super starfish man is getting old now! Longer and wider and bigger and lots of other things with -er on the end (cool er, laughing er, funny er, alert er, smiley er, hungry er {mostly, kind of} etc).


We had another busy week this week just gone... heart clinic Tuesday, audiology Wednesday, cleft clinic Thursday. 


Heart Clinic.
After a week of trying my darndest to increase Oscar's volumes of milk, I was excited to get him on the scales and see if my hard work had paid off. Looked like it had with Oscar weighing in at 4.75g, a 180g increase in a week and twice the previous weeks gain - looked like I had been doing something right... However Oscar was still below the line for his age. The Cardiologist wasn't bothered though as they don't expect heart babies to do all that well in this department! They do however want him to be at 5kg for his surgery so I was pleased we were heading in that direction. 


They decided he was working harder than before and it was time to put him on medication (which they had thought he'd be on at around 8 weeks of age - so he has done really well): I was relieved as I thought he wasn't doing as well as he had been as well - more sweaty and not taking as much milk as the previous week... He is now on two diuretic meds which will take a bit of pressure off his system.  


So all in all they were happy with him and at this stage surgery is still scheduled for mid October. 


I wasn't feeling all that happy about the medication for the first couple of days as Oscar was being sick after having it and seemed to be very sweaty still, so i had the community nurse, who monitors him between clinic visits, come out and see us yesterday. We had another weigh in and it turned out that he had lost 130g in only three days since Tuesday and had therefore actually only gained 80g in the previous 10 days, not the 180 I thought he had (most babies at this age put on around 300g per week). 


Needless to say I was gutted about the backwards step, but happy to know that he obviously was carrying extra fluid (which had evidently contributed to the higher weight gain but not been recognised as a cause), and so it was definitely the right thing to put him on the diuretics. Our next step is to meet with a dietician next week and get him started on some weight boosting powder which will be added to his formula.


Our nurse also thought Oscar wasn't looking quite as well as usual, so we will go back to heart clinic this coming Tuesday, rather than waiting the usual two week gap.


So there is a bit of a conflict of factors: Oscar eats less than he should because he gets exhausted faster due to the heart condition. He also uses more of his calories than normal with his heart (and other organs) working harder and faster than usual. And they want him to gain weight so he can have the problem fixed! But he is doing his best and that is all we can ask...


Audiology.
This was a follow up appointment to finish some tests that we went for in August. No change: he has reduced hearing due to fluid in his middle-ear which is expected with cleft babies, but the underlying audio mechanics are fine. He will start wearing a hearing aid shortly... the one they had there for him didn't actually work, so just waiting for a new one to arrive! It is a small box which clips on to a head band that goes around his head. There is only one aid needed to increase his hearing and it can go anywhere on his head as long as it is firmly against the skull bone - the device transfers the sounds to the bone and by-pass the blocked middle-ear where the fluid is sitting. The inner ear is normal, so no long term hearing problems, just muffled hearing without the aid until the palate surgery at 10-12 months. 


The idea is to wear the aid when we are talking to him or playing music, have guests etc, so that he can hear normally and start to engage with sounds and language. Apparently there is an American website where you can purchase modified caps which house the hearing aid which would be nice when we're out and about - so I'll be checking that out after I finish writing this!


Cleft Dental Clinic.
More anticipation before our dental visit as I was anxious to see what the orthodontist would have to say about his progress after our big efforts over the past two weeks to put the taping across Oscar's upper lip over night to help get ready for his lip repair surgery. It's been a real struggle for me in particular, but Oscar has accepted the taping and we're getting a good 10-12 hours overnight with it in place. It pulls the two parts of his upper lip together and helps create a kind of a step down under the nose (if you pucker your lips then press down on your upper lip beneath your nose you will get an idea of what we are trying to achieve). They would ideally like him to have it on for longer each day, but I'm not prepared to have it on during the day and have him struggling with it... small steps, small steps. Things had moved well, so progress made and we'll keep going with the regime!


Fi xx


The mamma-cat (Fi) is doing a really great job looking after Oscar and keeping up with everything while I swan about pretending to work. Oscar is a real happy little trooper and it is lovely to come home to them - usually sitting on the couch having a cuddle and waiting for me! 


Brennan xx

9 1/2 weeks old

update

We had a call from one of the Dr's at Starship on Monday after their meeting to say that they reviewed Oscar's case and his surgery wont be in the next 2 to 4 weeks but in 4 to 8 weeks. This is because he is doing well and isn't presenting with any side affects so that's good, but we would really like to know when it's going to happen and I am concerned about it stretching on as it means delays to his cleft surgeries.

Oscar had an appointment at Greenlane Hospital on Wednesday for a hearing test - there is a newly introduced Infant Hearing Screening Programme which he failed in hospital in the days after his birth, so this was a follow up test. He didn't do too well unfortunately as he has fluid in the middle ear - glue ear, which is pretty much always present with a cleft palate and should sort it's self out once he's had the palate repair done next year (hence my concern about the delays). So I was told that we have to talk to him with a raised voice so he can hear us and we have to go for more tests but they can give us a headband with two little devices which sit behind the ear and send the sounds straight to the bone and by-pass the middle ear so he can hear better. This will be important to help him develop language skills over the coming months.

Next Friday we see the ENT Specialist who is part of the large cleft team, so hoepfully she will be able to answer some of our questions about his hearing.

The taping went terribly - Oscar hated that as much as the bonnet/elastic combo and his mum found it all too hard and heart breaking, so we're taking a break from that for the minute. Hopefully I wont get in too much trouble with the orthodontist next week!

On the plus side, he is continuing to put on weight and is smiling more and more everyday.

Fiona

Clinic update

Oscar had both clinics yesterday - a quick checkup at Oral Health at Middlemore where they adjusted his mouth plate and applied some second skin to his checks and then a piece of taping across his lips (or lack there of) which he has to wear fulltime to help shape his lip area in preperation for his lip surgery.

Then we had heart clinic at Starship. This time he had to have all the tests done, so x-ray, ECG and echo scan. It was a long afternoon and a long wait at the end of all the tests to see the doctors. They were really happy with his progress and were impressed with his weight gain (about 20 grams per day) as it is hard for heart babies to put on weight. They have a meeting on Monday where they discuss all the cases and expect that they will decide to operate on Oscar in about 4 weeks time.

Although there will never be a 'good' time to hand over our precious baby, I am glad that the surgery will take place sooner rather than later (we had thought it could be 2 or 3 months before the op).

We will probably get about a weeks notice for the surgery, so we'll let you know when we hear.

Special thanks to our food rosta mates - had Robyn's fabulous cannelloni when we got home from our very long day yesterday! Bloody marvellous.

Numero uno

So welcome all to our blog to keep you up to date with Oscar's progress.

We decided that since Oscar has quite a few medical procedures to go through in the next 12 months that it would be good to start a blog and keep you all up to date with the latest news without you needing to call for medical updates. Of course all the terminology is confusing for us too, so this blog gives us the chance to get it all down clearly. 

Many of you won't have heard that to go along with the cleft lip and palate, Oscar has recently been diagnosed with a hole in his heart. It is called a VSD - Ventricular Septal Defect. 

"A VSD is a whole in the ventricular septum - the muscular wall that separates the right and left ventricles, or main pumping chambers of the heart. This opening allows the movement, or 'shunting', of blood between the ventricles. Most commonly, oxygenated blood from the left ventricle enters the right ventricle because there is  a greater pressure in the left ventricle and the resistance in the lungs is significantly lower than in the body tissues. This is known as a 'left-to-right-shunt'". 

"Ventricular Septal Defects are the most common form of congenital heart disease. Small holes usually close spontaneously in the first year or two of life. Large holes almost always require surgical closure in the first year of life. Larger holes may interfere with a child's feeding and growth and may cause rapid breathing, excessive sweating and poor weight gain..." (luckily for us, Oscar has not presented with any of these symptoms so far apart from his mildly increased respiratory rate).

"In a 'left-to-right-shunt', blood that just returned from the lungs crosses the VSD and goes back to the lungs again. This causes increased pulmonary (lung) blood flow. A heart murmur occurs because there is a pressure difference between the two ventricles and there is a turbulent blood flow crossing the hole. The smaller the hole the louder the murmur."

Oscar's is a large hole, which means he has to have surgery to correct it. 

We weren't expecting this added complication but thanks to our great health system Oscar is in very good hands and we have been well taken care of! 

Re Cleft: As you will know we had thought cleft-lip repair would be done at around 5-6 months of age and cleft-palate repair at around 10-12 months of age. Oscar Noah's heart surgery will force these other procedures to be delayed. While recovery from the cleft-related surgeries was expected to be comparatively immediate with Oscar released from hospital on the following day, the heart surgery will be more taxing with Oscar expected to be in hospital for up to ten days.

To be updated as news comes to hand.