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