15 months old

Hi All,
Oscar will be 15 months old on Sunday. He had his palate repair on the 8th July and has recovered really well. It was a slow recovery, but he got there in the end and is going great guns now. He really seemed to enjoy having his palate intact and started making purposeful, la, la la's almost straight away.


We saw his surgeon last week, which was 8 weeks since surgery and he is happy with the results and doesn't want to see him for another 12 months. Of course we were delighted with that news as we half expected there to be another surgery as there are a couple of residual holes in the palate. But one is very small and will hopefully close on it's own and the other will stay there until his bone-graft when he's 8 or so.


He also had appointments with Audiology and his ENT Specialist and they have decided that he'll require grommets (small drains to clear the fluid out of his ears). This is going to happen sometime in the next few weeks, we're just waiting for a date. This is a 15 minute procedure, so just a day stay in Starship, but of course they have to put him under, so I'm not super thrilled! 


His Speech Language Therapist is very excited about his progress now that he has recovered from surgery. He is eating really well and chatting away at daycare and home. He is pulling himself up on everything and getting ready to walk - but still a wee ways away from actually doing it!

Gramps gave me my first chocolate biscuit!

Coffee Group 1st Birthday outing at Butterfly Creek - August 2011

Oscar loving his vegetables!

Brennan and I are having lots of fun with him.


Hope you're all well and enjoying the RWC.
xx


fi

no more surgery... (for ages anyway)

Hi there,
I know this is very late in coming, but in my defense, I wrote all about Oscar's palate repair and I lost it... then I was too tired to do it again and I'm only now finding my way out of the post surgery haze!
Oscar is doing really well after surgery on the 8th July. It was fairly uneventful and after 2 nights in hospital we were sent home much to our delight! Hospital rooms are not made for 3 people!!
It's been a pretty unsettled few weeks with Oscar not sleeping well and feeling generally under the weather, but he's back at daycare this week and zooming around the place with his arm bands on (these are to prevent anything sharp or hard getting into his mouth and undoing the surgeons handywork). He only has to have them on for another couple of days so yippie to that!
Much to my delight, two of my dear friends have had babies during this time. Melissa had baby Molly in Australia on the 6th July and Cath has baby Nico in Auckland on the 14th July. We are excited to meet them and get to know them in the coming months and years. Hard to believe Oscar is 13 months already!
We've had a pretty crazy year and to be honest, I think it's only just dawning on me that we've been through so much without too many meltdowns - although Brennan may tell you otherwise... I found the lack of sleep after this last op almost unbearable and wasn't at my best! Anyway, that is all behind us now and there are no surgeries on the cards for us for 8 or 9 years. So raise your glasses to Oscar and lets celebrate a brave and adorable wee man.
x

postponement

Hi Folks,

Well you can stop wondering how Oscar's surgery went, as it hasn't happened yet. We got cancelled as Oscar came into contact with someone who had chicken pox so the hospital decided it was too risky to operate. We have a new booking on the 8th July so not long to wait and in the meantime we have a week off together next week to just relax. Oscar has had a bad cough for a long time and has just finished a course of antibiotics and is heaps better and is sleeping through the night again, so I'm glad for the extra time before surgery to get that sorted.
I finish my job tomorrow too, so will be a full time mum for the next month or so, which is perfect timing.
For those who don't know - which is most of you cos we've somehow managed to keep it pretty quiet, Brennan is studying full time this year. He is doing 2nd year law at AUT and loving it. It certainly keeps us all busy!

Here are a couple of photos of the first birthday party.x

One more time round

Hi folks

We don't really know if there is anyone out there anymore - we do know that we have been bad bloggers and haven't updated for ages...

But we want to let you all know that we are heading back to Middlemore on Tuesday this week - 28th June 2011 - for Oscar's palate repair.

That is Oscar Noah Rigby, who recently turned 1! - 19th June. He is doing really really well despite having been pretty hard hit by the common ills that apparently come with the joys of Day Care. And his birthday was a lovely day at home with family and friends.

So, back to Middlemore on Tuesday morning for surgery on Tuesday afternoon. We will be in for a few days depending on how he goes afterward.

and we'll let you know how it goes!... promise x

The all clear

Oscar had his follow up appointment with the cardiologist yesterday. He had a ultra-sound done to check there were no residual holes in his heart now that it has had time to recover from surgery. He was given the all clear and Jon (the cardiologist) was excited to see Oscar's new lip. We are very excited and don't have to go back and see them for 4 years - or just before Oscar starts school!!!!!!
Well done Oscar's heart. We can close that chapter now and await our surgery date for the palate repair, then this blog can go into retirement for a while.....

meet the surgeon

Hi there,
Well we were having a good day on Tuesday until the earthquake news came through, we'd been to see Oscar's surgeon for his post op check-up.

Oscar and his surgeon - Zac

Zac was very happy with the results of his handy work. The area has healed well and the nasal splints and arm splints are gone! Oscar can now put whatever he likes, in his mouth again - although one of the benefits of surgery, is that he's forgotten that he used to like putting everything in his gob.
Zac thinks he'll do the next repair when Oscar is about a year old - June or July, but he'll see Oscar in 3 months time to see if he's ready for it, or if he'll wait another few months.
 

I started back at work two weeks ago, was an unexpected offer to work on Power Rangers (kids show) which is based in Glen Eden - which is where we live, so just a 5 minute drive to the office! Oscar is settling well into daycare which is just around the corner from our house. He's there three days a week and seems to be doing really well! I work Sunday to Thursday so I'm with Oscar on Friday and Saturday and Brennan has him on Sunday and Monday, then daycare Tuesday to Thursday. It's a bit of an adjustment but it's all good and hey we don't have anything to complain about aye!

Hope you and yours are all well and safe out there.

fi x

Oscar visiting his mum at work.

10 days later

Well it appears we have made it to the other side. Oscar is doing really well and although he is still rather grizzly, he is also happy and smiley most of the time. He's sleeping through the night again and eating really well. We don't have a bottle option at the moment but he's going great guns on his little 'open' cup, which is a plasitc cup that he sips from. His greatest pleasure at the moment is ripping up tissues....

His nasal splints are staying in til we see the surgeon on the 22nd Feb, which is all good, but we'll be glad when they're out. Our main enemy at the moment is the humidity, but everyone in Auckland is in the same boat! Bring on autumn I say!!!
Hope you are all well. Bye, from a much more relaxed Fiona x

recovery

well it's been a difficult few days for us, but I think we may have gotten over the hump.
Oscar has had a few problems with feeding since the surgery which has caused a bit of stress for his parents but he was much more comfortable eating today and we are confident that he's on the improve! I think he has a sore throat from having the breathing tube in during surgery and possible oral thrush from all the antibiotics he had to be on for the surgery. We started the thrush medication this morning and there was an almost instant change in him. Previously he had been turning his head away every time we went to feed him. He also can't use the special teat he was using prior to surgery (which we were lead to believe he'd be straight back on). Anyways, we are spoon feeding him, one little spoon at a time, and when he'll let us, we syringe it in. Today we tried a little glass with milk in it for him to sip from and he got the hang of it right away... so at the moment, it's just trying all of those things and taking it nice and slow and when none of those things work and we don't think he's had enough fluids, we hold his head and force it in... not pleasant or ideal and has lead to more than a few tears between Oscar and myself.

Other than that, the wee man is doing brilliantly well and today we had lots of smiles.
The lip and nose both look amazing and he is as cute as a button. He is coping really well with the arm splints and is even sleeping through the night more or less.

I have a stinking head cold which is not helping matters but hopefully a good sleep tonight will have me feeling a bit more human tomorrow.

Waiting to go into theatre on Friday

Today (5 days later)

Here are a couple of photo's of the new look Oscar. The nasal prongs stay in for 2 weeks post op, so 9 days to go!!!

lip repair and nose job - Friday 28 Jan

JAN 28th AM
hi all.
Oscar had his surgery yesterday morning and it all went smoothly. He's recovering well and has been smiling, so we know they didn't change him too much!
The surgeon didn't end up doing any repair to the palate yesterday as the cleft was still too wide. He gave Oscar a lovely new lip and a nose job though and will do the hard palate when he does the soft palate repair in about 6 months time.
As you can imagine, yesterday was pretty tough for us. Mostly I just felt sad about the fact that Oscar has to go through so many procedures. Of course they are all positive and will give him a normal apperance and normal speech but it does seem a bit unfair somedays, and the days he comes out of surgery all sore and grimbly-grumbly are definitely among them!

He was pretty wacked out when he came back from recovery, but after a good sleep and a feed he was looking remarkably perky. We are having to feed him via a syringe for the next couple of days so as not to disturb the sutured upper lip... Oscar barely slept on the night before surgery, so neither did I, so I have come home tonight to try to take advantage of the empty house, and B is in charge.

JAN 29th PM
On the night following surgery Oscar was pretty restless then had a good period of sleep and woke super hungry at about 4 am. It was one of those 'Oscars back' moments. He had a big feed and just sat on the bouncy chair grinning at me the whole time - yes, oblivious to the time of day, but more importantly already adjusted to the syringe feeding and someway toward being adjusting to having a closed lip.

So, Saturday night, I am home and Fi is with Oscar at Middlemore. We may be discharged tomorrow, then Monday is a public holiday, so it could end up being Tuesday... Oscar today fed via syringe and had some pureed solids via a plastic spoon, good signs but we hope to see him take to the bottle again soon (you can image that the dynamic of feeding from the bottle has changed for him considerably, but hopefully when the tenderness around the upper lip declines he will feel more comfortable trying to suck and press down on the teet)... Also looking forward to the team changing the small dressing on his lip tomorrow so it can be cleaned and we can sneak a look underneath!

Funnily enough, we reckon he looks even cuter.

 

We have a date for surgery!

Oscar is scheduled for his first cleft surgery on Friday 28 January. We had a pre-admission appointment on Tuesday last week and we're all set to go for surgery this Friday! We go in on Thursday afternoon and he'll have surgery sometime on Friday.
They will be working to repair the hard palate (front of the mouth), his lip, and making his nose symmetrical. We're likely to be discharged on Saturday or Sunday. Basically once he's eating and having wet nappies they send you home.

He will have to wear arm splints for three weeks which will prevent him from being able to get his hands in his mouth while the area heals, to make sure he doesn't undo the surgeon's beautiful work. This will be an interesting time as pretty much everything gets put in his mouth these days, but they tell us that they get used to them quickly....

Then he'll have his soft palate repair sometime around 10 - 12 months of age (he was 7 months old yesterday).

We're excited and nervous now that the time has finally arrived, counting down, again. But Osacr doesn't seem worried about it all!

So we will probably be posting a bit more often and trying to keep you all up to date.

ok so this one will bring us up to date

Firstly, Happy 2011 everyone!
We are excited about this year as Oscar will turn one in it and that feels like the most exciting thing ever.
I'm sorry that we went quiet on the posts, but as the old saying goes - no news is good news!
Brennan, Oscar and I have just returned from a weeks holiday at Kaipara Flats (just out of Warkworth) where we were house sitting for our friends Craig and Amanda. It is a very beautiful and serene spot and we loved every minute of it. We had some chooks to look after and gardens to water which was fun and other than that lots of enjoying Oscar time. He is going great guns and mainly entertains himself by putting everything he can get his hands on into his mouth. He seems very keen to get moving and although it would be a stretch to say he is nearly crawling - he is making all the right motions and can turn around in circles very well! I think we have about a month to get the house ready for a baby that will be on the move.
Oscar's other new thing has been pushing his orthodontic plate out of his mouth. For the past month or so he has been able to get it out, so rather than it staying in there full time, it's out all the time and much to his displeasure it gets put in for bottle time. We are constantly paranoid that we will loose it somewhere as he can't have a bottle without it. Hopefully that wont be an issue for long though as it can't be long before we have a date for surgery. We are off to Middlemore today to see Heather the Orthodontist, so will see what she has to say.
Oscar has started on solids as well which he's doing a great job of. Funny all the things you think will be hard that turn out to be no problem at all! He seems to compensate very well for all his problems ie a mouth that doesn't close and a throat that can't swallow normally and he gets the food down without any drama.

Here are some recentish photos.

Oscar and Aunty Linda having playtime

Austin helping with feeding time (the cats are two of things he wants to get his hands on - patting is not really in the vocab yet though and tends to be a bit of a fur grab! - or his feet on this occasion. Austin, for the record, puts up with it as long as it means he can be near his Mamma.

Gramps Rigby taking Oscar for his first paddle (Cornwallis, for the record - we figure this photo is going to turn out to be one of the classics we will look at in 20 years and say 'where was that?')

Oscar and Josef (friend from Heart Ward) having a playdate

The Oscarnator in action

Oscar and friends getting ready to go for a walk

will let you know when we know about the next surgery and will also explain what happens in the first cleft repair.
Take care out there.
xx
fi

oops sorry it's taken so long....

Note - this was written ages ago - in mid November but never posted.... I promise to start writing again regularly!


It is hard to imagine what we should write in our blogs now... looking through the previous posts we are deeply reminded of how glad we are to be here, not there!

Though of course there are still matters, less significant, to report. About ten days ago we visited cardiology for Oscar's four week (give or take) post-op checkup. We have a lovely photo of Oscar with his chief cardiologist and the man who originally gave us the news, Jonathan Skinner. Great you are. Oscar had an ECG, a measure and a weigh, an O2 saturation taken, and an X-ray and Dr Skinner was happy with all his results - No Problem! So we are heading back there in another four months and in ever diminishing regularity until Oscar Noah is hopefully discharged - he'll always be a heart kid though, and, needless to say, to all you lot in the ward and in the team, we think of you all often, with love, and will continue to do so.

Afore-mentioned Dr Skinner (in the blue with glasses) (he really knows how to hold on to a baby!)... Mst Oscar Noah, and the unmistakeable and ever-reliable Mr Monkey Oswald Rigby (please do not note strange drawing on whiteboard! I'm sure it is a heart... valve or something)

So without delay onto other news! We met with Oscar's plastic surgeon on Friday - he is in charge of his lip and nose repair and some other stuff. It generally happens between three and five months, of course just when we were in Starship. So we were hoping it might be in line for us this side of Christmas, but as it has turned out, the surgeon feels that we can get a better result if we wait until Jan or Feb 2011 and Mum and Dad make a concerted effort on the taping across his lip. It is fair to say that we let this task slip a little during our Starship stay and struggled with it before we were called up for the heart repair. Nonetheless, we are back on the horse now and in fact Oscar seems pretty relaxed about the tape situation now, whereas before it seem to agitate him no end.

So, comparatively, nothing really to report except some extremely healthy weight gains, visits with home care nurses who seem to come around because they want to see Oscar rather than because it is a job, and a bit of relief maybe to think that we are off the hook for a few more months to rest and enjoy our lovely son at home, before any more major interruptions!