Thinking & Feeling

“The world is a tragedy to those who feel, but a comedy to those who think.” Horace Walpole

Friday, 25 December 2015

The Elves of Christmas in review

These Christmas Elves have been visiting me every year for 10 years now.

I love it and look forward to, and treasure, these photos every year!

This is how they have evolved through the years...







Tuesday, 22 December 2015

Thanksgiving 2015

On 6 Dec (9 days behind the official date) we hosted Thanksgiving in Cape Town 2015.​​

About 40 friends and family joined us to eat, drink and be merry and most importantly be thankful and show gratitude for the many blessings in our lives.
As is customary during the dinner festivities we went around and allowed everyone to say a few words of thanks as they wished. It was completely optional. I REALLY didn't think either of my boys would speak - a good few adults were too shy to - but they both did! They stood up in front of all those people, many of which they don't know and:

Quinn: Said that he had just come back from a really tough 10 day hike at school*, and that after only getting very limited supplies of powdered soya mince and powdered mash etc and starving most of the time for 10 days that he is very grateful for home and FOOD! And also for for Nathaniel's heart op being successful and for his amazing recovery since.

Griffin: Said he is grateful for me and all the time and effort I am putting into all his end of Grade 7 stuff and getting him ready for high school and all the money being spent on his schooling. That when I am busy with the baby, Quinn will help out with cooking and make dinner. And for having his baby brother.


I'm so impressed that neither mentioned technology, or consumer goods at all. xxx

*More so Quinn's group Journey apparently got old/wrong maps and had a very bad start to their journey. Their guide was new and completely inexperienced too. So they got horribly lost and went the wrong way walking 20+km extra on the first day or 2 and taking 2-3 days to find any of the proper scheduled activities, so they ran out of food and missed a lot of the fun stuff. The group morale was VERY low and they had one boy who stopped eating or drinking, and another who was very unfit and slow and they had to carry all of these 2's stuff for them. In the end they had an intervention and 4 of the group gave up, left and went home early. Quinn says he had the option to quit, but chose to stick it out and finish. And he did. Apparently by the end he had been largely instrumental in turning the group's spirit around and they finished as one of the groups with the strongest vibe. And ended up loving it. I am VERY proud of him for that. What a great life lesson right there!

​My gratitude for this year:
There is a Swedish proverb that says "Shared joy is a double joy; shared sorrow is half a sorrow." I think this sums up my experience and learnings this year.

As I started to reflect on this past year to count my blessings and think about what I am thankful for so many thoughts and feelings came up. I realised that behind that which I am thankful for is deep, raw and very real emotion. There came the realisation that despite the good it's been a really difficult year where much has been quite chaotic and in flux.

Some really significant and traumatic things have happened that have shaken us to our core. Things that are not easy to cope with at all. And yet we all did.
We have all survived, strived and even thrived despite all the challenges and so I have realised that it is the social bonds and the support given through the good AND bad stuff that strengthen us, and that make the joy that much sweeter and the deep sorrows to be bearable.

So am really grateful for the bonds:
- Of family.
- Of our tribe here in Cantoria. Lead by our King Andrew and his little Prince Nathaniel.
- Of my big boys Quinn & Griffin who are my life's pride.
- Of my extended family of parents, sisters and their families
- Of Andrew's father and siblings.
- And of course the very special bond of friends both near and far.

I am thankful:

That my boys Quinn & Griffin remain wonderfully easy going, and excellent big brothers to Nathaniel.

That we got to take little Nathaniel to go see his America family in the states and especially Grandpa Lou in Florida.

That despite the extra chaos it brings; that our lives have been rich and full of visits of family and friends from all over the world.

And I really am grateful that I have a home full of boys (including the cat and dog) that understand, support and tolerate me (most of the time).

To end off some wisdom from another Swedish proverb which says:
"Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours"

Merry Christmas one and all!

It's that time of year again....

I hope that you have a wonderful Festive Season, celebrating in whatever way you do.

May you have plenty of time to have fun, relax, enjoy friends and family, and good food and drinks.

I hope 2015 has been a good year for you and that 2016 is even better!

With much love
Jane and all the boys in my life

Monday, 7 September 2015

Nathaniel is ONE, so time to get myself back... *ENTER BANTING*

Long ramble below, but the question is in BOLD below, so please just read and answer that if you don't want to read the rest..? THANKS.
So I'm doing a Banting type thing. Not super strict as I don't have a lot of weight to lose, and I don't think I am insulin resistant (yet), but I had got into a terrible habit and downhill spiral of simple-carb addiction. So while I have always eaten well and consciously previously, in the past year since living here and having baby, I would eat sweets, cakes, biscuits etc. pretty much with abandon. And for the most part my metabolism could handle it - because of breastfeeding. YAY! So no harm really. But I got to the point that I was almost justifying eating so much crap. 'About to exercise, so some chocolate is fine!', 'I just exercised so this muesli bar is good'... blah blah bullshit.

Anyway, with running 50-60km a week, and BF'ing and not getting enough sleep I was always tired and/or hungry and because I can't sleep when I want or need to caffeine and sugar are the quickest and easiest 'drugs' to try to 'buy' energy.

But then I started weaning, and then injured my heel at around the same time. Now that doesn't mean I did nothing. I went to the gym EVERY DAY (to do yoga, pilates, power-plate, circuit whatever I could). I tried to eat less, and found I was less hungry anyway without all that cardio. Yet I started gaining weight and bloat, esp around my middle, and alarmingly fast too! I literally put on 2-3kgs in a week or 2!! And I wasn't being a pig (well not overtly anyway). If I am honest I was still eating a fair amount of crap in there. (Don't tell A I called his brownies 'crap') ;)

So I decided something had to change and that my body must actually be a bit out of whack. I guess a pregnancy, breastfeeding and diet change, weaning etc etc over 40 will do that to you huh?!

Watching 'That Sugar Film', Spring season starting, Weaning baby, and him turning 1 years old (I can really no longer use the excuse that 'I have just had a baby' I haven't!) and wanting to FEEL good in and about myself and and and seemed the perfect timing to consciously make a change.

I started last Tuesday and have gradually improved each day with being more conscious and aware of what I am eating and then adjusting that to make better choices. I am by no means doing the whole proper Banting thing, but I am eating 100% more consciously and probably 90% more healthily (in the Banting definition of that).

I am not yet at the point of thinking beans, chickpeas, peanut, raisin, tomato sauce or 70& Dark Chocolate etc are 'bad', but as and when I have that kind of thing I do it in moderation and consciously and I think that's good.

I have successfully, and easily passed up on cupcakes, biscuits, muffins, toast, potato, Lindor chocolates, brownies, cookies, jam, cereal, left over party sweets, Tim-Tams, Nutella.... My life and this house is just FULL of this stuff! Even the YUMMY Butternut Panzeroti everyone else ate last night (I was going to eat it and then though, nah, I really don't need it at all). PLUS I have stopped just eating what the baby discards - which is big for me and I think I did that impulsively without even really noticing!

And I have discovered my heel can cope with spinning so I have some cardio back too which helps in all sorts of ways also. BUT I am not ravenous from it or out of control guzzling carbs, YAY.

For me a BIG mind shift is to thinking and believing that Fats and Oils are OK! I would previously have done low carb AND low fat. I steam veggies, fry without oil, use only lean eat etc. SO actually adding olive oil and butter to stuff I would usually have cooked and eaten plain is a bit of a mind shift for me, but I am giving it a try.

2 things I have noticed so far:
- I used to flavour my foods a LOT. Heaps of salt, pepper, herbs and spices. Now I am seeming not to do it and am just eating stuff quite plain and liking the actual taste of the thing.
- And things taste DELICIOUS. A and I shared an omelette yesterday and the spinach and tomato inside it tasted DIVINE. I couldn't stop commenting on it. I am sure it WAS delicious, but do think a week or 2 ago it would have tasted that good to me. I think more so my taste buds have become more sensitive again and I can tastes and appreciate flavours better.
I had a cappuccino too with no sugar/sweetener or anything and I liked the taste of that too. Last week I would have been reluctant to drink it.

So anyway this is starting to make sense and I can't refute that even though I didn't get either of my usual lie-ins this week-end, I was willing and able to wake up when baby did and don't feel drained and exhausted any more, and I think that was probably mostly carb hang-over now..? And I don't feel hungry, irritable, fuzzy headed all the time either. So I want to give this a decent go now, since I think I am over the initial hump and it's making sense and seems to really 'work'.

So my question is:
Do you HAVE to eat breakfast??
- I'm more of a cup or 2 of coffee when I wake up person. I don't want to eat until about 10-11am anyway (even on high carbs) so now I am really not hungry when I wake up...
Yesterday I went to do a 90-min spin-class at 08:30am and then did a 90-min yoga class after that and only ate at 12:30. But felt fine doing that.
- So can you skip breakfast and eat later on (mid-morning or early lunch) whether you are exercising or not, or is breakfast considered important and really necessary for some reason?


Monday, 24 August 2015

Griffin's Birthday

Griffin's original birth story got lost, since the page it was posted on got removed. I finally found a right up of it, so I am reposting it for my own records now.

He was born on 12 November 2001. I was 27.

Griffin's Birthday 

I had another healthy and uneventful pregnancy, and stayed fit and active right to the end. My due date was estimated to be 15 November, but due to the fact that Quinn was born large (and overdue) we monitored the size of the new baby. An ultrasound at 38 weeks estimated that the baby weighed around 3.9kgs already! With gains of around 250g per week I was not keen to go overdue again... 

So at 7am on Monday 12 November, Richard and I met my midwife Kate, at Vincent Pallotti Hospital to attempt an induction. We deliberately arrived early, to ensure that we'd be able to use the labour ward with the birth pool, as I wanted to have another water-birth. 

Kate inserted the prostaglandin gel at 7:45, and after 45 minutes of monitoring, we were sent out to walk around to stimulate contractions. The walking did help but the contractions were not very strong or regular. By 11:45 I was dilated to nearly 3cm, which was enough to allow Kate to rupture my membranes - releasing a flood of fluid which sounded like a running tap!  

Once the mighty flow abated we went out walking again, and the contractions were stronger, but still not very regular, or intense. Once back in our ward Richard lit some candles and placed some of our aromatherapy labour oil in a burner, while Kate massaged my lower back and bump with some of the aromatherapy oil. 

Four hours after the AROM, at 3:45 Kate again checked my progress, and found I'd only dilated to 4cm. I found this very disheartening, as by this time with Quinn's birth he was almost ready to be born... Kate mentioned that with such slow progress we may have to consider a Pitocin drip. I was very against this, and asked if there was anything else I could do. She phoned my gynae who agreed that we could wait another 2 hours, and then access the situation again. 

I could feel the intensity of the contractions increasing, and was starting to have to concentrate and breathe through them. I alternated between standing, leaning forward against the bed, and sitting leaning forward in a chair. I mostly focused on my own and squeezed stress balls (one in each hand) during the peak of contractions. 

At about 5:15pm I told Kate I would love to get into the birth pool - thinking I was still making slow progress, she suggested I wait until 5:45, when the additional 2 hours would be over, when we could access my progress and make a decision. 

That half hour seemed really long, and I was really having to focus during contractions. I was feeling a bit disappointed, and felt that if I wasn't at at least 7cm by 5:45 I may not have the strength or courage to continue. In the mean time I started feeling really drowsy, and was almost nodding off during the short time between contractions. I laughed and said that if I wasn't in labour, I could have quite happily gone to sleep. Kate said that was a sign that my oxytocin levels were high, as a side effect of oxytocin is drowsiness. 

Finally 5:45 arrived, and Kate suggested I empty my bladder before the internal. She came along with me and I had 2 big contractions while out of the room, and had to hobble back. 

I then climbed onto the bed, while Kate readied herself with gloves etc. Richard, who had not been feeling well since mid morning, and had an upset stomach had been sitting and reading on the side. 

As I got up onto the bed I curled up into a foetal position on my side and suddenly felt a change. A powerful force overtook me and I suddenly felt the urge to push. I yelled that I was pushing, and Kate hurriedly grabbed her phone to call her assistant mid-wife who was meant to be there for the birth. I shouted that I wanted to be in the bath, and Richard leaped up and started filling it.... I could not control the incredible pushing force and felt very out of control on my back, I yelled for them to help me up.. She then ran back in and placed a pillow in front of a chair and told Richard to sit in the chair. She then helped me off the bed, and got me to kneel on the pillow and lean on Richard. Kate then dashed outside to ask if one of the hospital mid-wives could assist. 

I put a hand down to feel, and felt the baby's head crowning. I called for Kate, saying the baby was coming. Before she got back from the door, and without any pushing from me, with the next contraction I felt the baby's head coming out. I felt again and could feel that the whole head was out! I was breathless and a bit overwhelmed by how quickly and suddenly everything was happening. Kate got down behind me and told me to push. I said I wanted to rest and wait for the next contraction - she said, ' This baby wants to come NOW', so I gave 2 pushes and felt the burn of one shoulder then the next and then the slither of the rest of the body coming out. Richard said 'It's a boy'. 

I sat down on the floor and held the precious little boy. I was still in complete disbelief at what had just happened, and was trying to catch my breath. 

I checked the clock and it was still before 6pm. I asked Kate what time he had been born and she said, '6 minutes to 6 - and you only got up on the bed at around 12 minutes to 6!'. 

A hospital mid-wife then popped in at the door to see if we needed help, but it was already all over. Once the chord had stopped pulsating, it was clamped, and then Richard cut it. The placenta was delivered, without much fuss, and then the assistant mid-wife Glynnis rushed in saying, ' I got here as soon as I could'. 

I got up on the bed again to have a few stitches put in, as I had torn slightly when the shoulder were born as they were slightly stuck. It was then that I realised that we hadn't even used the birth-pool, and had no birth photos! 

We named our newest family member Griffin. He was indeed big and weighed in at 4.46kg, which is just 10g lighter than Quinn was, but 12 days earlier! He was 54cm long, and has a 37cm circumference head. His apgars were 8 & 9 - losing points for colour and initial breathing. 

Richard then went home to fetch Quinn so he could meet his brother. 

When they arrived I had been moved to the maternity ward, and as Quinn arrived he said 'Baby! Giffin!' which was very sweet. 

I sent the night in the hospital, and went home after breakfast the next day.

Quinn's Birth Story

Quinn's original birth story got lost, since the page it was posted on got removed. I finally found a right up of it, so I am reposting it for my own records now.

He was born on 3 January 2000. I was 25.

The Mighty Quinn 

After losing our first baby prematurely, under very traumatic circumstances, my husband Richard and I felt strongly that we wanted the birth of our next baby to be a happy and joyous occasion. 

I became pregnant again in April 1999. The pregnancy went very well and once we were past the initial fear of another premature birth, we started looking for a midwife who would work with us, and respect our wishes. We found this in Kate Christie. She was happy for us to plan the birth exactly the way we wanted it, and never questioned any of our choices. She was extremely encouraging during my antenatal visits, in her calm and gentle way. 

My due date had been estimated around Christmas Day 1999, but that day came and went with no sign of the baby's arrival. We had expressed the wish not to be rushed into an induction should I go overdue, so we waited to see what would happen. The New Year also came and went with no sign of any real contractions, and by this time I was starting to feel a little impatient, as we knew the baby was quite large, and I was anxious to avoid too much medical intervention. We had made all the necessary arrangements for a home-water-birth. We had the birth pool set-up, and had all the necessary supplies on hand. 

By Monday 3 January 2000, our second anniversary, at 11 days overdue, I decided it was time to get things going. I phoned Kate to discuss our options. She explained that we could try a prostaglandin gel induction, but that we would then have to go into hospital so that we could be monitored. We decided to go in, as we wanted to try for a natural delivery, and didn't want to risk needing an emergency caesarean, as my blood pressure was starting to rise. 

We met Kate at Vincent Pallotti hospital an hour later. Kate inserted the gel at 14h30, and then sent us out for a walk. I knew that if the gel didn't work I would end up needing a pitocin drip, which I wanted to avoid at all costs, so I walked and walked, inside and outside, and sure enough contractions started. They weren't however very strong or regular. So we finally agreed for Kate to rupture my membranes. This was not in our birth-plan but under the circumstances we decided it would be a good idea, as the baby's head was still high, and wasn't pushing on the cervix - Kate thought the added pressure might be what was needed to encourage progression. Kate performed a controlled rupture of the membranes at 18:15. 

This had the desired effect, and I soon started having strong regular contractions. By 19:30 I was really having to concentrate and breathe through contractions and couldn't find a comfortable position. Kate suggested I try getting into the birth pool for a while. Which I did, while Richard lit some scented candles and put some labour oil into our aromatherapy burner. The water was fantastic, and changed the nature of the contractions from feelings of pain, to pressure. Within minutes of being in the pool I started making grunting sounds, and thought I needed to push. After a quick check Kate declared that I was already 9cm dilated! 

I had to pant and blow for a while to allow my body to finish dilating, and while Kate hurriedly called her assistant, Glynnis. 

Kate then told me to listen to my body, and go with what ever it told me to do. I tried various pushing positions, from kneeling and standing, to sitting, and finally decided that squatting was the most comfortable and effective, it also allowed me to feel grounded, and Richard was able to hold me from behind. The contractions were coming on fast and strong, without much of a break in between. I was finding it hard to push, and seemed to be fighting the feeling rather than surrendering. I could feel the baby's head inside me, but I was starting to doubt my ability to carry on, when there was a sudden reprieve. For about 7 minutes there were no contractions, during which time I gathered my mental strength and even dozed slightly. As the next contraction mounted I braced myself and put all my strength into pushing. The crowning was rather painful and I again doubted myself, when suddenly Kate said, "The head is out, feel it!"

It was amazing a big soft warm head under the water; I couldn't believe how much it was moving & turning from side to side. With that another contraction came and after easing one shoulder out the entire baby slipped out. The feeling was quite awesome. It was 10:22 pm. 

And there suddenly, finally was our baby! A perfect chubby baby looking up and staring straight into my eyes. Richard wrapped his arms around us and said " Happy Birthday" to the baby and "Happy Anniversary" to me. It was only after quite a few minutes that Glynnis reminded us to check if it was a boy or girl, I lifted a leg, and there was no doubt that he was a boy! I said "It's a Quinn". 

We were left together in the pool for a while, and Quinn started suckling hungrily. We were all a little surprised to hear that he weighed 4.47kgs, and was 57cm long  a big baby indeed. His apgars were 9/10. 

Richard went home to get a bit of sleep, while I roomed in with Quinn. I stayed awake all night, too excited and happy to sleep. I watched the bright orange and pink hues fill my window as morning broke the next day. After a perfunctory paediatrician check early the next morning we discharged ourselves, and went home. 

Tuesday, 4 August 2015

Nathaniel's Op Incision

This is a photo taken by Quinn of Nathaniel's incision when I was changing the dressing on Sunday....
It's the first time I have changed the dressing since leaving the hospital. It needs to stay covered as it heals... With my ab repair op back in 2003. I had to keep micropore on it for several months. The plastic surgeons claim that the best way to ensure a neat and thin scar is to keep the incision held together like that. So I suspect we'll keep this one dressed for a few weeks yet.

I think the incision looks good. The 2 scars at the bottom are where the drains were, so those are little crosses. The very bottom of the main incision leaked a little at first in the hospital, but dried out after a day or so, and that area has a bit of a scab on it now. It's not wet or infected though, just has a yellowish scab from the plasma that was leaking.

He is doing well and is mostly back to his old self, and is walking quite nicely again now. He is still a bit clingy and whiny at times, and still wakes up and looks for me a lot more at night. But he seems ok.

He has a check-up with the surgeon on Thurs. I think she'll be happy. In a month he goes back to the paed cardiologist for another u/s to see how his heart and valve are doing and if they have settled in to a nice new normal. He'll also have his 1 year check-up then!

The complaint I sent to the hospital was acknowledged and they said they'd take it up with the relevant department. Let's hope they do.

I took a while to recover. It was overwhelming being back at work last week and trying to catch up and do everything I had to. My whole body was sore, tense, stiff and tired. If I tried to run I would feel nauseous and like I would get another migraine. So I just stopped trying to do much of anything. After a chilled week-end where we spent lots of time just being, playing, getting fresh air and sunshine etc though I feel so much better this week. I did have a bit of a pity cry last night after a tough day, and it felt good to actually finally let go and let it all out, after being so 'strong' and coping through it all. ...

Saturday, 1 August 2015

Nathaniel's' Open Heart Surgery Experience Part 2/2

Following on from Part 1 of Nathaniel's Heart defect diagnosis and surgery we found ourselves settled into ward 12A - the paediatric ward of the hospital. Being the mom, and still breastfeeding I was the default care-giver to stay at the hospital with him. So although A did visit as much as he could and came around for the doctor checks and tests he was able to pretty much carry on with life and get a bit of work done - and help with getting the boys to school etc as they were back at school by now and their lives needed to go on.

I ended up staying in the hospital with him for 4 days and 3 nights, with just one brief break to go home and shower etc once in that time.... those days were LONG and I lost track of time and the outside world, with not even a window to look out of. It was both a tiring, stressful frustrating and sort of pleasant time. I had to sleep IN his cot with him, my back has still not forgiven me for that. And there is so much noise, routine, disruption and frankly nonsense that goes on in a hospital. They really do not leave you alone or let you rest at all. Someone always wants something, even in the middle of the night. So I was busy doing something. Cleaning, dressing, feeding, changing, medicating, checking temps, checking BP, check O2 stats, reading to, playing with, putting to sleep, waking up, cuddling Nathaniel all the time. Day and night and all confined to on or around that little 'jail-cot'.
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But that said despite how awful being in hospital was, that special 'nothing else to do but sit here cuddling' time was super special and I really enjoyed the bonding time and opportunity we had. Nathaniel and I definitely got closer though the experience and I am grateful for that.
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It was also nice to have a break from having to prepare meals and cater for a few days. A cooked meal arrived for him 3 times a day, and once for me too. It was cool being able to just feed him and eat and not have to try to juggle entertaining him and trying to cook while keeping him happy (admittedly the other 2 boys do help a lot with this at home anyway, but still).
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So overall the time in the hospital was mostly pretty bearable and at times bemusedly pleasant, if you just follow the rules and instructions and are not stroppy, but one particular nurse was beyond awful.

She is really not good. She does not communicate well, clearly or even in a pleasant manner with parents, and is rough, to the point of potentially damaging, to children both psychologically and physically. Her bedside manner is very bad and her handling of patients (well Nathaniel at least), is I feel almost abusive. 2 examples:
- On our fist evening in the ward after ICU, after Nathaniel having had all meds via IV or nasal tube prior, she proceeded to shove 5-6 different meds down his throat via syringes in quick succession. It was done FAR to fast and roughly done and as a result a few minutes later he vomited out the entire contents of his stomach. Note that he has NEVER vomited before (or since). She didn't seem to care and kind of laughed it off saying 'maybe he had it too fast'. YOU THINK!?

From then on he went on a meds hunger-strike. And we struggled to get him to take any oral medication, and after trying to add it to his milk he stopped drinking anything from a bottle too. Leaving only breastfeeding as an option to get nourishment into him. On Monday we got nearly no pain medication into him at all, and only on ME telling Dr Vosloo this late that evening did she suggest using suppositories. Surely the nursing staff could and should have considered this option??? He had been clearly in pain all day...  2 Nurses and myself then administered suppositories to him, gently and with no issue over the next day. 

- On the Tuesday evening this same nurse decided she was going to administer a suppository and she literally shoved her entire thumb up inside his anus and rectum so hard and fast and right up beyond the second knuckle that he screamed and shrieked in pain! I was so shocked and horrified I couldn't believe it. Surely that is 1) unnecessary 2) dangerous, and could perforate the bowel!? and 3) actually pretty abusive!? I am absolutely appalled at her treatment and lack of compassion and care. After that he was scared and upset every time we administer the suppositories, and clamped his legs together in fear of anticipated pain, even though I always did it as gently and slowly as possible to ensure there is no pain.

I was horrified and appalled. I was actually a bit traumatised by it myself. After we left I actually lodged a complaint about her as I feel it is important that something is done about it, and to potentially spare any other babies and young children from having to endure unnecessarily traumatic experiences with her.

Nathaniel progressed nicely over the days, and had a follow-up U/S on the Tuesday by Dr Pribut where he measured the pressure differential on the aortic valve to be 20 (down from 80) so that's great. He did detect a bit of a leak, but says it does not look serious at all and he thinks it might settle down quite well in a few months, when we'll check a gain to see how everything has re-stabilised.

On Wednesday morning on her rounds Dr Vosloo examined him and decided he was strong, in good health and his incision was healing as it should so she gave us the ok to go home! YAY YAY YAY.

I packed up and got organised as fast as I could and then hung around the nurses station expectantly and kind of harassed the nurses to get their asses into gear then, as we needed a dressing change of the incision and to get his drain stitches out before we could go. We also had to wait for a prescription of suppositories to be filled. This would have taken hours if we'd waited for them to be sent to the ward. I insisted on going down to the pharmacy to get them myself on the way out thanks.

Eventually we were FREE. Nathaniel and I high-tailed it out to the car and the little boy who usually does not like his car seat or car rides much actually smiled when I put him in it. I do think he was very glad to finally be going home after nearly a whole week in hospital. Poor boy.

When we got home he flopped about on the big bed really happily. Hugging the pillows, turning the TV on, admiring himself in the mirror and chopping on an apple.

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We are now 2 weeks out from the surgery and he is better and stronger every day. After a few really clingy days and nights and struggling to get him to take a bottle or to eat still he has started trusting us and being himself again and is healing from the experience in all ways.

He has a check up with the surgeon this week, but I think she'll be very happy with his progress.

So here's hoping his repaired valve stays in good repair and doesn't give him any more trouble!

Tuesday, 28 July 2015

Nathaniel - from well and healthy to open heart surgery in 1 week!

Wow, where to start?? 

I think I can safely say that the past 2 weeks have been the most harrowing, traumatic and stressful of my entire life.

I have been through a lot, and know I can cope with a lot too, but I don't think anything can prepare a person for what we went through...

A few weeks ago we had a healthy 'perfect' baby. One who was born at home, and had had a pretty perfect health record. He'd only seen a doctor 2-3 times in his life and even those were purely routine check-ups. His first and only really issue had been a nappy-rash caused by teething his top teeth,it was clearly uncomfortable for him and we thought it needed a good strong cream to get rid of it. So we made a GP appointment. By the time the appointment rolled around it was already clearing. I almost suggested cancelling, but A decided to go ahead, thinking a general well-baby check-up was not a bad idea anyway.

That was Monday 29 June so exactly 4 weeks ago now. Our lovely competent, and very caring GP Dr Lauren Lee gave Nathaniel a once over and routinely listened to his heart while he was there. She said she heard something she was not happy with, but told A it was likely an 'innocent murmur'. (Note that She'd never heard anything she didn't like before and she's checked him about 3 other times previously) But to be safe she referred us to a cardiac paediatrician, so that he could assess.  Remembering that he was such a robust, rambunctious and well baby we were barely concerned and made the appointment as a formality. 

The appointment with the Cardiac paediatrician Dr Harold Pribut was on Monday 6 July. Since we were fully expecting it to be declared 'nothing', A took him to the appointment and I didn't even attend it. So it was a complete shock and surprise for me to get the call from A following the appointment that actually it wasn't nothing. It was very much SOMETHING.

He referred us to a cardio-thoracic surgeon Dr Susan Vosloo, and we managed to get an appointment that same week on Friday 10 July. She confirmed the diagnosis from Dr Pribut that Nathaniel had a congenital Aortic Valve Stenosis (apparently it seems certain it was caused when his heart first formed and was not caused by any other environmental factors before or since his birth). The valve does not have the typical bi-cuspid deformity (which is the more common issue where only 2 cusps form instead of 3), and is tri-cuspid as it should be, but there is webbing between 2 of the cusps effectively fusing 2 of the cusps and making it work as if it were bicuspid. In additional to this it was ALSO narrowed and not opening to the full diameter of the valve (about 6mm instead of 10mm), so this created restricted flow through the valve and a lot of pressure behind it, i.e. in his heart -I think its the left ventricle. The pressure gradient should normally be about 10, Nathaniel's was 80 (over 70 is considered serious and boarding 100 is dangerously serious). The consequence of this is that his heart has to pump and work much harder to get blood out of the aorta, and long term result is the hart muscle enlarging and thickening and this is not good. The ultimate consequence if left untreated is heart  damage and finally heart failure.

Wow, that was a lot to take in! In consultation with Dr Lee, Pribut & Vosloo we established that surgery was definitely needed and that the diagnosis was not in question, and that Drs Pribut and Vosloo are pretty much in the top of their fields and are internationally recognised as among the very best cardiac doctors in the world.

We were told it was not a dire emergency, but that it was serious and not something we should wait too long to do. They said the 'best' time to do the op would be before any damage was done to the heart, and they felt that this may already be starting to happen.

So between the surgeon, paediatric cardiologist, GP and us we wanted to get it done sooner rather than later. So we dived in and opted to just do it the very next week. Before we had time to think/worry about it too much. And also reasoning that:
1) He was well and healthy, which is the first prerequisite for such a major surgery. If there is any sign of illness it is deferred by a month. I reckoned that if we scheduled it for several weeks in advanced inevitably he'd just get sick in that time.
2) The big boys were home for the holidays so we have no complicated schedules or transport issues, ad they weren't bringing germs back and forth from school too.
3) Nathaniel's 1st birthday is coming up at the end of August, I sort of wanted to get it done and dusted an behind us, and have him forget all about it so he can celebrate his birthday and move on without this hanging over us.
4) There was no real reason to wait, and I am quite decisive generally and once I decide something I like to to just happen asap.

So the op was scheduled for Thursday 16 July. We were told it would be about a 3-hour op (much longer than I had first expected) and it would require a full cardio-pulmonary bypass (ie he'd be on a 'heart and lung machine' and his heart will be stopped and 'on ice' for the procedure and then restarted at the end... ). He'd need to be kept in ICU for about 3 days afterwards and would spend about a week in hospital. So pretty serious and scary stuff!
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I had to take him into hospital at mid-day on Wednesday 15 July, for all the pre-op prep. Baseline blood tests, vital stats, ECG baseline, lung x-rays and various swabs etc, and I also spent the night in the hospital with him, having to keep him nil per mouth from the early hours of the morning - NOT easy with a co-sleeping breast-feeder in a too small pull out bed in a noisy disrupted hospital ward.
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We were woken at 5am anyway and I had to get him up and give him a  'sterile bath' and dress him in his hospital gown. A arrived just after 6am for a quick cuddle and then he was given the pre-med which made him drowsy and he was soon asleep. By 06:45am we were waiting in the theatre receiving area and by 07:15am they took him away. Telling us to come back at about 11:30am.

We weren't sure what to do. I knew sitting in the waiting room is not a good idea and is the surest way to lose your mind from worry. Previously with Quinn's ear ops I'd go for a run while Dr Raynham operated. The weather was bad though, and we were frankly too exhausted and fussy headed to consider doing anything requiring co-ordination, and neither of us wanted to eat, or socialise.... so we ended up driving home, where I lit a vigil candle and then we crawled into bed and ended up both falling asleep. I actually think that was the best think we could have done as the time passed quickly and we both got some much needed rest, having not slept well in the nights leading up to the surgery and esp that night before.

We got up and still dazed and slow in mind and movement - I felt like I was moving through a thick fog that whole day, and nothing felt real or normal - headed back to the hospital and to the surgical ICU waiting area. We were soon called for and told that all had gone well and he was out of surgery and being set up in the ICU. We were taken through to see him.

Even though I knew what to expect, NOTHING can prepare you for seeing your usually strong, mobile, vocal and vital child lying seemingly 'lifeless' like that with tubes, lines, monitors, wires, bandages, plasters and machines all over. He looked nothing like himself. His head was bandaged up, and he was on a ventilator. His eyes were taped shut, his hand tied down and the drain lines were jutting out of his chest. The chest incision seemed huge and really long. There were arterial and venous lines in his groin and neck and electrical heart pacing wires coming out of his chest. He also had ECG sensors all over his body. The noise of the machines seemed overwhelming. My instinct was to touch his cheek and arm and tell him he was ok, and that we were there and he'd be all right. His ICU nurse snapped at me and told me not to touch him, or actually even to talk to him, as I was affecting his blood pressure and 'upsetting' him. I felt awful, confused, and hurt. All I wanted to do was help him, to be there for him, to soothe him and take some of it away for him, and yet I felt like just being there was making it worse. It was beyond awful. I just stood there quietly, watching him and willing him to be ok.
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I can't actually remember now how the rest of that day went. I know we spent the afternoon there with him and at some point we went home for dinner. I think we went back again and then went home to sleep. The next day we got a new ICU nurse Virginia. She was kind and caring and not only allowed but seemed to encourage me to sit near him and talk to and stroke him. She kept telling us how strong and mobile he was and how it was a challenge to keep him sedated. They try to keep the babies sedated for several days post-surgery so they don't fight or fail and rather to keep them still and calm and allow them to 'sleep' and rest through the worst of it so their bodies can just heal. She took some expressed breast milk from me and told me she'd tube feed it to him for comfort and to line his stomach, even though he didn't need it nutritionally yet as he was on intravenous IVs.
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After lunch on Friday she told us that he had somehow managed to come out of sedation enough to flip himself over onto his tummy not once, not twice but FOUR consecutive times!!! (He still has a massive and nasty groin bruise to show for that from the arterial line he rolled over). She was astounded. He was semi-waking and moaning and sticking his tongue out trying to talk or something. It was both distressing to see and also heartening to see how strong and 'alive' he was.
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By Friday late evening Virginia said that much as they increased the frequency and doses of the sedatives they just couldn't keep him sedated and so were going to let him start waking up. I was fine with that.

By Saturday morning although she said he had had a fitful night, he'd been awake enough to actually take both bottles of breast milk I'd lift and he needed more. He was able to open his eyes and moan and croak a bit when he saw me. Since I didn't have more milk bottles with me Virginia went out of her way to help me to breast feed him instead thinking that would be just what he (and I) needed to feel calmer and more settled. So she got him out of his bed and onto a pillow on my lap (quite a major logistical operation mind you), where he latched on and suckled away making both him and me very happy. What an angel Virginia was and I am so grateful that we got matched to her, she was just what we needed.
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Later on Saturday afternoon Quinn popped in while Nathaniel was restless and moaning. And while children are strictly NOT ALLOWED IN THE ICU, Virginia was quite ok with bending the rules and letting Nathaniel's very favourite person come sit with him. Especially when she saw how Nathaniel immediately settled down, relaxed and became calmly alert and responsive as soon as he saw Quinn. She even acknowledged that there is only so much they can do medically, the rest of the healing is done by the family and the nurturing relationships the patient has.

​By Saturday night a little bit of his personality was staring to return and he was babbling away and being quite comical at times, in between being woozy and moaning from the pain. Virginia let us know that he might be ready to be discharged from the ICU on Sunday morning. YAY!

Sunday morning rolled around and I leaped out of bed feeling quite chirpy. I had to drop Quinn off near town to go do some school related community service and so popped by the hospital to visit with Nathaniel nice and early. He was fast asleep and Virginia told me he'd had a really good night, sleeping well and naturally for most of the night and taking bottles happily as needed. He was still fast asleep when I visited, so encouraged by the news and Virginia's assurance that the doctor would be use to release him up to the general Paed ward after her rounds, I decided to head out for a little run. To get some fresh air and sunshine and finally have a chance to BREATHE.

So off I went. I headed straight from the hospital and ran along the fan walk and Seapoint Promenade to the swimming pools and back. It was a beautiful morning, and although I wasn't really feeling very fit or strong, I enjoyed the chance to be out in the 'normal' world. However as I got back to the hospital I realised that all was not well with me... my tell tail physical pressure cooker symptoms started to reveal themselves and Murphy's Law as Virgina pones me to say Nathaniel was being moved up to the ward, I realised I was getting a full-blown migraine. DAMMIT!

There was little I could do other than head straight to the hospital pharmacy to buy whatever migraine treatment they had and down a handful of those, and then call Andrew so he could head over to come be with Nathaniel. Once he arrived I got myself home while I could and slept the worst of it off for a few hours. I have not felt that bad for a long long time, and it was clearly my body's way of letting me know it was not coping and needed to release some of the stress. It felt REALLY HORRIBLE not being able to be there for baby boy though just as he was well enough to be properly awake and sitting up though... 

Once I got back to him though he was happily reading with his daddy and I think they'd actually had some really good quality bonding time, so I guess all's well that ends well.

TBC in part 2...

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Saturday, 25 July 2015

USA Trip: Taking Nathaniel to his paternal roots. Part 4 - NYC!

Following Part 3...

It was finally time to go visit the long awaited and much anticipated NEW YORK CITY!

We all piled in the car and started the long drive from New Jersey to NYC. AFter quite a long traffic heavy drive we eventually went through the Holland Tunnel and arrived in Manhattan!
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Surely a place like no other...
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I think people could easily spend a week exploring just Manhattan, certainly a few days, never mind the whole of New York City. We had just one afternoon and evening, so what did we do...?

Well, first we spent about an hour looking for parking. LOL. And OMG it is impossible to find parking there and holy crap it is expensive... like easily $40USD for 2 hours (That about R450).
Once we'd parked, moved and parked again we headed straight to China Town.
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Where we went straight into a Dim Sum restaurant to eat. I wanted to be annoyed and frustrated, because, 'Hello you American people, I want to see NYC!?'... but then, Dim Sum, OMG, DIM SUM. OM NOM NOM NOM!

Seriously, it was the best Dim Sum ever. It was like being in Dim Sum heaven. And Jill clearly knew what she was doing, so as the cart came by she'd grab it and order one of all the yummy things, sometimes 2!
It was seriously delicious!
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So after stuffing ourselves full of Dim Sum we walked around China Town a bit and explored the store selling weird and wonderful fruit and nut products and sweets (they had chicken feet jelly sweets!) before I final put my foot down and told the others I want to see New York dammit. There are flippen China Towns everywhere in the world, and as fun and weird and wonderful as they are they all look the same! *rolls eyes*

They reluctantly listened to me, but first Jill made us go get this warm custard stuff (bean curds apparently) for dessert, which would have been ok if it had any flavour. Instead it was just bland and tasteless...
And then we walked, a very short walk, on to Little Italy.
Where we almost immediately stopped for cannolis!
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After that I told A I was going to have a fit if we didn't actually start to get going see SOME of New York. I mean it could be my only ever chance to be there. He agreed that they were indeed buggering around, so we walked on to SoHo. By this time Cliff was fretting about his car and Jill wasn't super keen on walking so we decided to split up. I had Nathaniel on my back, and A and I walked on leaving Cliff, Jill ad Rachel to browse and shop as they wanted to and then to get their car and we agreed to meet at Central Park.
We finally were able to get up to stride and walked and walked and walked, getting to see the Empire State and MetLife Buildings in the distance...
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Until we finally got to Grand Central Station via a quick coffee stop at Starbucks.
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We had to high tail our way fro there to Central Park. As soon as we met up with Jill and family she bought a pretzel. She is the skinniest person ever. I am not sure how as she spends all day buying food! Actually I think she just makes everyone else eat, I am not sure how much of it she eats herself - typical Jewish mama! :)

Anyway we walked a ways along the outside and around a small piece of the inside near the Plaza hotel. Again you could spend DAYS exploring just Central Park, it is HUGE.
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Once we were done with Central Park we let Cliff drive us toward Times Square, where we walked around and had a look around then explored both Hershey World and M&M world, oh my world between the mega merchandising, chocolate and the frenetic energy of Times Square it was actually all a bit much.
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It's busy, loud and bright, and quite an assault to the senses... we sat for a while on a grand stand just taking it all in, and then decided it was time for food!

We ended up walking to a Chinese restaurant and I had a really nice pad thai for dinner.

With that it was quite late and ready to head home to bed!

The next day was mother's day and Jill invited her parents over for brunch. We go to enjoy that with them and then all to soon our trip was over and it was time to pack our bags head off to Newark airport and fly back home.

It was a really amazing trip and I am very glad I got to experience America again, it has many and varied amazing parts and people. It was great to be able to take Nathaniel over and show him off a bit, and it was wonderful that so many of A's friends and family got to meet him.

Thanks for everything everyone!