What a day! Monday 30 April '07 that is.

Or maybe I should say: what a week!
Last We. Nadia had a bike accident and landed on her left arm, breaking it :-(
And today Tirzah got her right middle finger squashed in the door. Ouch!
We love to wear our 'babies' in our house, so that's what we did ;-)
I usually just wear Noah but Tirzah was so upset today, that I decided to put her on my back. It was surprisingly comfy! All 20kg of her...!
But Noah got jealous, so Nadia decided to put him on her back!!!

And to top it all off: Noah is cutting his first 2 molars AND he's taken his first few steps!!!!!!!!!!!!!!!!

So yeah, what a day...

Transfer from carepages

Hi,

I started this blog last week by transferring all my posts from Noah's carepage on to here.
The carepage was a nice tool to keep people informed about Noah's health and progress but not everybody could access it and it was a hassle with having to have a username and password.

Then I found out about these blogs. Duh! I should have done that in the first place...!
Never mind. All the posts from the carepage are now on here. It might look a bit funny to start off with, because I only just transferred them. I have put the original dates on which I wrote the posts at the top of each post. Hopefully that will be clear enough.
Now I just have to put more photos on here and update it every now and then ;-)

You can leave comments on here too, like the message board on the carepage. Or of course simply email us on konakiwis@gmail.com

14 April '07:
Oh dear, I haven't been here in ages! Sorry!
Better give you an update, as Noah is only 3 weeks (!) shy of his first birthday.

He had his first checkup with his cardiologist in Feb.
He had to have an ECG, an X-ray and a heart ultrasound. Everything is well!!! He does have a slight murmur and the valve that was repaired has a mild leak but the doctor said it was nothing to worry about.

In the mean time, Noah started crawling in Jan. and he's now nearly walking. He cruises along the furniture and generally gets into EVERYTHING.
It's so amazing to think that when he was 3 months old, he could barely lift his head up.
He has the most beautiful dark eye lashes, his eyes are a sort of darkish blue and he has more hair than any of his siblings at this age ;-)

9 Nov. '06:
Time flies! Noah turned 6 months last Monday!!! Wow!
He's all better now, no more ear ache. Although I suspect he's teething again. The flow of endless dribble is worse than usual!

It's hard at times to believe he's been through so much in just 6 months. But then I look at him, at his beautiful smile and his scar and I know it wasn't a bad dream.
But we can never ever really express our gratefulness to God Who saved Noah's life and allowed him to be with us. We all enjoy our little man SOOOOOOOO much!
He's nearly able to sit up by himself and he's rolling all over the place, so we need to be prepared for when he get mobile. Oh no....! If you've been to our house, you know that's not an easy thing... Too much stuff for him to get into...
I'm going to have to do some serious packing away and tidying up very soon!
Noah is still fully breastfed. He doesn't seem ready for solids yet and as long as he's gaining weight, I'm more than happy to delay the introduction of solids. His older siblings never liked solids much as babies and Tirzah (his 5yo sister) was exclusively breastfed for over 11 (!) months. And she's healthy as!

Noah is very active. The more movement, the better. A few days ago, I took hom to a preschool music programmeat the church next door (Yes, we live right next door to a church, not our church though).
He loved it so much, it was so funny watching him. He wanted to join in with his whole body ;-)
I will try to take him regularly, whenever Craig is home to look after the other children.

25 Oct. '06:
Noah has been doing really, really well lately!
But right now he's pretty sick again :-(
He's had a cold for a while but it didn't seem anything major at all.
Yesterday he went downhill fast, so I took him to see the doctor. He was diagnosed with an ear infection in both ears. Poor little man...
Today he still has a high fever, doesn't drink much, vomitted violently and is asleep most of the time. I just took him back to the doctor and he still has very infected ears. So he's now on antibiotics.
He's starting to get a bit dehydrated, so I also have to try to keep his fluids up as much as I can. Otherwise we might have to go to the hospital tomorrow. And that's the last place we want to go!

This all brings back so many memories for me, from when he went to hospital... It's hard yet I'm thankful this is 'only' an ear infection and has nothing to do with his heart.

18 Sept.:
Well, Noah saw his paediatrician dr. Selby last Thursday. She was so pleased with him and with his progress!
He's now off ALL medication and fully breastfed. Yeah!!!
He's 5.7kg (12 and a half pounds) and 62cm (a bit over 24 inches). That means he's in the 10th percentile of the growth chart. He used to be in the 3rd percentile...!

He has a sticky eye at the moment. He was born with 2 sticky eyes and it took ages for them to clear up. I suspect a blocked tearduct. Been squirting breastmilk in it.

11 Sept. '06:
Noah is over his chest infection now!
He coughed for quite a while, but he's fine now. While he was sick, he didn't put any weight on for 2 weeks.
But last week he was weighed again and he'd put on 300 grams in 6 days!!! That's about 10 ounces.
He now weighs 5.56kg (or a little over 12lbs).

At the tender age of just 4 months he's also cut his first 2 teeth! He dribbles like crazy all the time and if I'm not careful, he bites me when he's feeding. OUCH! Hopefully he'll quickly learn to stop that.

It's already the 25th of Aug. here in NZ and it's Tirzah's 5th birthday. Noah & I spent hours in the hospital though this morning... I took him to see the GP this morning and she reckoned Noah had to be checked out by the paediatrician(s) in the hospital, to be on the safe side. So off we went to Tauranga Hospital. Got there by 10.30AM and ended up staying till 2.15PM. Most of it was just waiting in the emergency department. Noah was checked out by several people, all the while charming everyone with his beautiful smile :-) They took x-rays of his lungs and a swab from the back of his nose to check for influenza and RSV. His lungs were fine and the other tests came back negative! Praise the Lord for that!!! It seems he just has bronchilitis. He's feeding okay and producing enough wet nappies (diapers), so we were allowed to go home! I found it quite hard being in the emergency department. It was the very same place Noah was taken to when he first got sick at 5 days of age. All those memories of that awful day came flooding back... But at the same time I'm so, so grateful for how healthy he is now! And for his weight gain, his cheeky smile, his lovely personality, etc. Just amazing!!!

22 Aug. '06:
It's still winter here in NZ and Noah unfortunately picked up a cold last week. It's now gone to his chest :-(
He's seen the GP twice this week and today the doctor put him on antibiotics for his chest. I guess the good thing is that it hasn't gone to his lungs (yet?). I don't like putting Noah on antibiotics, as he already had so many when he was in hospital and I know too much about the nasty side effects of AB.
But I don't want this chest infection to turn into something worse either!
Please pray that Noah won't get sicker but better instead.
This cold has already caused a lot of sleepless nights for both Noah and me...
He's asleep in the sling right now, so sweet :-)
But I can clearly hear the 'rattle' in his chest as he's breathing.

Thanks for reading this and for your support!

2 August '06

Noah & I got back from Auckland this morning.
We flew up to 'the big smoke' yesterday, for Noah's MRI in Starship Hospital.
It all went very smoothly. It was kind of strange for me to be back in PICU, where Noah was being prepared for the MRI.
I saw some of the nurses, but none of the ones I got to know well was on yesterday :-(
Noah got lots of attention from the staff that was on duty anyway. Everybody says he's so alert, with very wise eyes. And that he's beautiful.
Just gotta brag a bit ;-)

The doctor involved with this study the MRI was for, had a talk with me. He explained that the very first MRI Noah had (before his first surgery) showed that his brain was completely normal.
The second MRI was done just after his first operation. This one showed 2 or 3 white spots on his brain. Lots of babies have these white spots, some have up to 20 or 30. Most of the time these spots have disappeared by the time the babies are 3 months old with their 3rd MRI.
They don't know yet what these white spots mean and it's one of the things they're looking at in this study.
Apparently babies who have had heart surgery and been on the bypass machine, are slightly more prone to e.g. ADHD and clumsiness. Hmmm... these things tend to run in our family anyway. so if Noah turns out to have them, there's no way of telling whether it was because of the surgery or not!
We're not worried, it's not something we can change anyway.
We will get a report of this 3rd MRI a bit later on and when Noah is 2 years old there will be another one plus an assessment of his development.

Last week I wrote that Noah's feeding tube had come out. He saw his paediatrician dr. Selby on Monday and she was very happy with his growth and progress! He's now just within the bottom line of the growth chart for 3 month old babies with his weight, height and head circumference.
He still has a small amount of diuretic medication and we're also giving him Duocal by mouth. This is a powder mixed with water or breastmilk, that provides extra calories and fat. Noah hates the stuff in his mouth, but I want to persevere with it as long as we can, to help him grow.

27 July:

The NG tube has come out today!!! Yeah!!! No more nasal gastric feeds (I hope, just breastfeeds.
On Tuesday (1 Aug.) Noah & I fly to Auckland. This trip is payed for by the research programme he's enrolled in. It's a neuro-cardiac study, to research the effects of heart surgery on babies' brains. For those of you in NZ and saw us on TV3 news back in May: yes, Noah was on the news because of that research.
Anyway, so he's having an MRI on Tuesday, in Starship, stay the night in a motel and then fly back the next day.
When Noah is 2 years old, he'll have another MRI and they will also asses his progress at that stage. There may be a follow-up when he's 5 years old. The research programme is still trying to secure funding for the 5yo follow-up.
So far, Noah's brain development has been fine! That's very reassuring.

So next week is a busy one for us: the paediatrician on Mo. and then up to Auckland on Tuesday.
Will keep you updated as I can!

25 July here in New Zealand right now.
And Noah continues to do so well.
He was weighed yesterday and now weighs 4470g. (about 9lbs11)!!! I can even tell by carrying him that he's getting heavier. He now has chubby cheeks, like his siblings used to have as babies ;-)

This coming Mo. he has to go and see his paediatrician. I hope she will say his feeding tube can come out. Noah only has 1 tubefeed a day now, with the rest breastfeeds.
The only thing with his tube coming out will be to figure out how to give him his medication. He either gags when you put something in his mouth (other than my nipple LOL) or just spits it out. So that might be a bit of a challenge. We'll see...

The day after arriving in Tauranga (it was June 13, '06) I was allowed to try and breastfeed Noah again, for the first time after 33 (!) days. As soon as I put him on the breast, he knew what to do and was away, heartely sucking and drinking!!! It was so amazing! I just sat there, feeding him and crying tears of happiness. All that expressing had not been for nothing after all. It was a real answer to prayer for me.
From then on, I could slowly increase the amount of breastfeeds each day and decrease the amount of formula. Noah had several x-rays to make sure the chylothorax wasn't returning and his lungs stayed clear. The x-rays showed his lungs stayed very clear!

We stayed in Tauranga Hospital for 6 days and went home on 17 June, just in time for Joel's birthday on 19 June. Joel, Noah's oldest brother is now 12.
It was nice to be home for Joel's birthday, but a few days later, when I went to see Noah's paediatrician, Noah had lost too much weight and she wanted Noah back in hospital. The story gets a bit boring from here on, it's all about weight gain or weight loss and feeding. We ended up staying in hospital for 2 nights. By then we were better off at home, as there were too many bugs going around in the children's ward. A week later we were back in hospital AGAIN... :-(
This time we stayed for 10 days... By now Noah had his feeding tube (NG) back in and the first few days he had only tube feeds of expressed breast milk, just to get some weight back on him.
It was hard being back in hospital again, but at last Noah started to gain weight. By the time we went home, he was on 3 breastfeeds and 5 NG feeds a day.
The home care nurses from the hospital now come 2x a week to weigh Noah. He's packing the weight on now! (July '06)
As I write this on 20 July '06, he's now 4.25kg or 9lbs 3. His birth weight was 3.7kg or 8lbs 3. And he gets 2 tube feeds plus 6 breast feeds a day. We're hoping to get rid of the tube soon.
We're extremely grateful to our Heavenly Father for saving Noah's life and for having him with us. He's such a joy and a blessing!

That Sunday was Mother's Day(May 14, 2006). It was so weird for me, being so far away from my older 4 children and having to spend it in PICU with my very sick newborn. The night nurses had made lovely cards for the mums for Mother's Day, with baby's foot print on it. Very sweet! It was the only Mother's Day present for me that day.

On Mo. it was decided that Noah would have his operation on Tuesday, May 16. His due date!
By then we had been able to contact quite a few people and we knew that lots of people all over the world were praying for Noah. This gave me such a peace!
He went into theatre quite early that morning. By 1pm we got a phone call that he was safely off the bypass machine!

The first few days after the operation he seemed to do well and to improve every day. But by the weekend, his improvement slowed down and from then on, it seemed that with every step forward, there was one if not more steps backwards. His kidneys refused to kick back in for quite a while, he retained far too much fluid and all sorts of other things went wrong.
By the next weekend, his surgeon, Kirsten Finucane, was getting really worried about him. She told us later that she'd worried about him all weekend and studied his ultrasounds and x-rays.
She rang us on Mo.morning to say she wanted to talk to us. She'd decided to do another operation, as it turned out Noah had another, smaller VSD that was causing the trouble, together with his smaller left ventricle.
It was a shock to us that Noah had to have another operation, but we knew it was necessary. We were told at 10AM and by 11.30AM he was wheeled into theatre.

This time I had a much harder time coping with it, but by late afternoon Noah was back in PICU and the operation had gone well, his surgeon told us. It was horrible to see him so pale, hooke dup to all sorts of machines and drains again, just like after the first operation.
But by the next day we could already tell that he was recovering a lot faster than the first time! He only spent one more week in PICU and was then discharged to the Children's Heart Ward in Starship.
In the mean time he'd developed chylothorax after the second operation. This is a condition in which the fat from the breastmilk is draining into the chest cavity, due to some small damage in his tummy (belly). This happens to about 30% of babies after cardiac surgery. I was told Noah couldn't have my milk for a while. This was such a blow to me, after I had been expressing for weeks.
But because the chylothorax was discovered quickly, he would only have to be on a special low fat formula for about 2 weeks, instead of the usual 6-8 weeks.
So while in the Children's Heart Ward, Noah was on this formula (Monogen) while I kept expressing.

After 6 days in the heart ward, we were able to transfer back to Tauranga Hospital. But that day was a stormy day again (it's winter in this part of the world!) and Auckland suffered major powercuts that day. Starship had no power either, other than what they could get from their generators. It meant doctors couldn't get into computers or e.g. look at x-rays. It was real chaos!
Traffic in Auckland was chaotic too, as many traffic lights weren't working. We were waiting for an ambulance from Tauranga to pick us up and it turned up hours later than expected.
By 3pm we finally left Starship and got to Tauranga Hospital by 6pm.

Writing this on July 18, 2006:

We're a homeschooling family, living in New Zealand. Dad is a kiwi, mum is from Holland. I (mum) use British English spelling, as that's what is common in New Zealand. Just so you know ;-)

In Sept. 2005 we found out that we were pregnant with our fifth baby. A very welcome surprise!
Noah was born at home on Sat., May 6, 2006, ten days before his due date. It was a very long and hard labour, some 28 hours all together, but without complications. And we were thankful to have another healthy baby, or so we thought...
By Thursday morning May 11, Noah was a strange colour and he wasn't feeding at all. It scared me, so I rang my midwife Bet. She was able to come over almost straight away.When she took one look at Noah's skin colour, she said we had to go to hospital NOW. It was so scary, I had no idea what could be wrong with my precious, tiny 5 day old baby.
Bet put Noah & me in her car and drove us to our local hospital in Tauranga. It's about a 30 min.drive from where we live. I remember keeping an eye on Noah in his carseat and wondering what was wrong with him and if he'd make it to the hospital... All I could do was cry...

Once in the emergency department, they saw Noah within minutes of us arriving there.
Lots of doctors, house surgeons and other staff all had a look at him, poked him, prodded him, tried to find veins to take blood. It was so awful! Noah just screamed and screamed and his little body had gone into shock, so they couldn't find any veins.
In the end, after a powercut (it was a stormy day), x-rays and lots of other stuff, including a lot of crying, Noah was transferred to the ICU and put on a ventilator.
It was decided he had to be flown by helicopter to Waikato Hospital, a far bigger hospital, as Tauranga can't deal with very sick babies.

Craig & I went home to get some stuff and to pray with the other four children and say goodbye to them. Mike (Craig's best friend) was already staying with us, so he could look after the children.
By about 6pm the hospital rang us that Noah was on his way in the helicopter to Waikato Hospital in Hamilton.
Craig & I drove to Hamilton, about a 2 hour drive. I don't know how I survived it. I'd never ever left one of my babies at this young age. And now Noah was somewhere up in the air, in a helicopter, on his way to NICU (Newborn Intensive Care Unit)...

We spent that night in Waikato Hospital, still not knowing what was wrong with Noah. They suspected infections, maybe blood poisoning or pneumonia.
The next morning blood test results starting coming back but they didn't show the amount of infections suspected. It was decided to do a heart ultrasound on Noah.
It was then that the reason for him being so unwell was discovered. He had multiple heart defects!
I was in shock when I was told yet at the same time strangely 'happy' to know what was wrong. Craig had a coarctation of the aorta too, so I knew what that was.
At this stage in Waikato, all we were told that Noah also had a coarctation of the aorta, a narrowing.

Waikato Hospital doesn't deal with cardiac babies so Noah would have to be transported once again. Only one day after his first helicopter ride, he was to have another one. This time to Starship Hospital in Auckland, the only children's hospital in New Zealand. Craig & I had to drive to Auckland, as we couldn't fit into the helicopter.
By the time we got to Starship's PICU (Paediatric Intensive Care Unit), it was around 8PM. Noah was already stabilised and again on a ventilator. He was also quite bloated from fluid retention. He looked like a little Michelin Man! Every time I looked at him, I just cried... The cardiologist told us he'd already done a heart ultrasound himself and explained that Noah not only had a coarctation of the aorta but also at least one hole, a VSD (of some 7mm!) and that the left ventricle of his heart was small. It was all rather overwhelming to take all that in at that stage.