A Catch-up Update....on Nate!

Well it's been a very busy last few weeks for Nate. Where to start?!

I don't think I ever updated with his 3year height and weight update - Nate was 98cm and 14.8kg on his third birthday, which is above 50% percentile and a great outcome :-). Here he is below with Anna our District Nurse, who visits him every six months or so now. He got to pick his reward stickers after we successfully weighed and measured Big Teddy, and then we did Nate :-)

We also had a fleeting visit from Big Sister Mia, who was up for a couple of days from Wellington where she is at uni. Nate quickly had her doing his bidding again - reading on the rug in his bedroom and running up and down the hallway playing ball :-)

And in more good news, Nate has taken to his car bed quite literally like a duck to water. Given how much he loves his cot, I had some concerns about moving him to a bed, but it's been no problem at all. In fact he won't get out of bed in the morning until someone comes in to get him (such a good boy!), but we know he sneaks around before he goes to sleep at night or before his daytime nap. We can tell because all sorts of things end up in bed with him - like a massive box of newborn nappies destined for his baby sister, 6-7 books, sometimes a few extra blankets, you name it, he'll find it! Once I caught him out of the bed in the middle of his rug, obviously en route to get something, and he just froze! Then he flashed me the 'finish' sign, like he was just finishing up whatever he was doing and heading back to bed - cheeky monkey!

His fascination with cars continues outside of his bed too - he loves to point out and say 'round and round'. In fact when we were out the other day and he had decided he had had enough of being there (at Starship A&E as it happens), he was quick to verbally tell us 'round and round' (which sadly had to fall on deaf ears at the time as we waited for x-rays). He has an ever growing collection of little cars though, and loves to try them all out....

And here he is sharing a few cuddles with Daddy the same day...

Technically these magnatiles do oh-so-much-more than just this, but Nate still loves to stack them! In fact this is one game where he can get quite frustrated if you don't sit with him and play alongside.....

And here he is gesturing and signing along with a stirring rendition of 'If you're happy and you know it, clap your hands......and stamp your feet (only this must be done with great concentration (cue tongue), and VERY enthusiatically!)....

.....followed by pat your head (equal enthusiasm required!)......

......and then....to celebrate.....climb the furniture - like most three year old boys like to do :-)

In other good news, we got his MRI results back and they show no change on the MRI prior (I think from about 18-24months ago). There were some small abnormalities then, but they are no worse or different now. We had requested the MRI because of the seizure the other month - so it looks like that for now, that was just a one-off occurrence (touch wood), which is good news. Unfortunately we have another anaesthetic coming up later this month, when we finally do his hearing test on his right ear. That will tell us whether his hearing aid needs a boost, which hopefully might help his speech come along.

Speaking of speech...it hasn't been coming along so well....we have been on Gemiini for over a month now, and while he really enjoys those videos and definitely seems to comprehend them, we haven't seen a radical change. Unfortunately it hasn't really prompted mimicking of new sounds, although he does join in on the ones he already knows. We have had the occasional words like 'home', 'again', 'dog', and Granny has heard a 'zebra' and 'lion' once too. Unfortunately they are just that, occasional and rare. Points again to some sort of apraxia which is pretty disheartening quite frankly. Nate (and us) continue to get frustrated at our mutual lack of communication, although we are still progressing with sign and also a picture board in an attempt to get him to use that as a backup route. His comprehension is still pretty good - if you ask him to show you a number or a letter, he can do it. Just can't quite manage to actually say it. I'm not sure what that is going to mean in terms of future schooling options though, and that is a bit of a worry for us :-(

Anxiety-wise, we haven't been too bad in the last month or so - he really is better when people come to our place, versus when we go to other peoples! Or if we are out, we bribe him into places with promise of him getting to choose a treat - works well in busy food courts (provided there is a McDs!), or equally in supermarkets and even cafés. Hey we'll take whatever works! Our paed has given us the name for some public and private help - it might be a long wait for public.....so we may venture private to get some support. We are also waiting a PT and OT assessment for him at home, hoping to have some aids that might encourage toileting and the like.

More recently in May/June, we have had a run of sickness over the last month too - he picked up an ear infection after his brain MRI (probably picked up in hospital), which then became a UTI - all of which resulted in three Starship visits in the space of basically three days. Not fun. And then it took a solid two weeks to kick it all to touch, so no daycare for Nate over that time. He then made it back to daycare for a week (he goes two days a week), and promptly picked up another virus, which saw us back to the GP. Challenged in his ability to clear the mucus and flem, he then choked on a chip, resulting in the need for assistance from Helen to help him dislodge the chip and throw up. Pretty scary stuff.

So with his symptoms continuing to worsen, we then had another trip to Starship A&E, to make sure that what we were dealing with was a virus turned bacterial (in which case, just needing antibiotics), or possible chip-aspiration on the lungs. One x-ray later, and it confirmeds signs of a bacterial infection in his upper chest, so back on strong antibiotics we went. As I write this now, he is four days into antibiotics and on the mend, but still needing ventilin to help him with his coughing fits. Poor little chap has had a rough run. And frankly so have we. It really takes it's toll, the stress of a special needs kiddo, and that statement goes well beyond just dealing with the bugs. (Later update - after 10days of antibiotics, Nate is now back on track).

Anyway here he is on happier days over the last few weeks, reading with Grandaddy...

And charging around in Granny's slippers.......

Granny and Grandaddy have been gone about a week now on their 8week USA-Europe jaunt. By all accounts they are having a fabulous time in California with my brother Craig and family, and getting some quality R&R in the warm weather. Shortly they will be off to the UK to spend time with my other brother Darryl, and Jo, Tom and Ethan, and also spending two weeks on a river cruise which I am sure will be just amazing. Here we are at the airport seeing them off...

And here is the little man, enjoying an ice lolly, while he helps us start to clean out the garage - prompted by the annual inorganic collection, and a need for us to start getting rid of some of our stuff that has been cluttering the garage for at least 2years now - trademe here it comes! Wow won't it be amazing to actually park two cars in there one day?!

Finally, our beautiful little man in winter-chill out mode at home.....x

 

 

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Nate and his May MRI

May brought with it one of the two follow-up appointments at Starship that we had been expecting from our last paediatrician visit....

• One has been planned to test his hearing under a general anaesthetic, in order to get a better hearing read and thus a hearing aid that better meets his needs. This will likely happen in June now.
• And the second was planned to redo his brain MRI following the odd seizure he had back in March, and to see if there have been any changes since his last brain MRI when he was about a year ago.

Today, we did the latter, and Nate managed it very well overall.

Granny kindly came with me to help out, which was really needed given I am not supposed to be lifting Nate right now, and Nate does love his Granny's company :-). He was his usual anxious self, waving goodbye to his nurse pretty much as soon as we arrived and clinging to me. Although at least that briefly stopped him focusing on wanting a bottle and breakfast! We did manage to entertain him with their toys for a little bit though.

Granny and Nate playing on phones!

Hello?!

After a relaxant med was given to him, he coped much better and we even had some smiles, albeit some drowsy out-of-it ones.

Here are some photos of us while we were in recovery...

We won't have results for a week or two, but fingers crossed nothing nasty is coming our way on that front. Our little man has rested up over the rest of the day, and is now back to his gorgeous, delightfully cheeky self :-)

 

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May update on Baby Bean

Check out the below, for the latest on Baby Bean....

Let's start with the good news.....after a few weeks now on bed rest, we are now safely past the 26week mark, which although not yet 90% viability, is a whole lot better than where we were :-). Yippee!

More good news....Baby Bean is growing really well, and pretty much sitting at around 50% on her measurements which is awesome! Here she is below.....

Bean's growth tracking

But unfortunately it hasn't been all good news on the pregnancy front.......since our last update, Mummy failed the glucose test in W26, and has now been diagnosed with gestational diabetes!!! My score on the two hour test (for those familiar with it) was 11, so it was a pretty solid fail.

• How's my luck you ask?! Well some stats I have heard suggest it's 5-8% of pregnancies, although I have also heard it is up to around 15%. To have that on top of the past SCH bleed and cerclage issue seems a bit bad luck, who knows what the odds of that are?!
• Gestational diabetes apparently results from the placenta and all the increased hormones, which impacts the pancreas ability to keep up with natural insulin production for mum and baby. Women who have a family history (both my grandmothers had this, albeit much later in life), a miscarriage history (tick), and are over 25y (ah yes, by just a few years), have a higher predisposition. Plus those who are overweight prior to pregnancy, which I'm hoping wasn't me! Contrary to what most people think, it doesn't come about because one ate too much sugar, and isn't as simple as just cutting out sugar. It's about carbs, made up of both starches and sugars, both of which result as glucose in the blood. And what is particularly scary though, is that 50% of women who have gestational diabetes (which only lasts while you are pregnant), will go on to develop type 2 diabetes at some stage later in life. Eeeekkk!
• So it's been a bit of a wake up call at our house in the last week. I am now testing my glucose levels four times a day (a fasting measure on waking up, and then again two hours post each main meal), while also trying out gestational diabetes diets to see what can work for me and what keeps me in the target blood sugars range. The fasting range I have been told to aim for is 3.5-5.0, and the two hour post meal range is 3.5-6.0. While I am only a week into this so far, I have already discovered that carbs are a real challenge for me. Goodbye Vogel toast with marmite for breakfast! Or bread at breakfast at all for that matter. And welcome to three main meals a day, along with three snacks morning, afternoon, and evening. And a new world of carb counting.
• I've yet to be seen by the diabetics clinic, so not sure if I will be on meds as yet or not. However I'm certainly finding it pretty tough to stay in the target range - I can now sneak into the range on the fasting measure most days at 4.8ish, but post meals my range is anywhere from 5.1 (rare) through to 7.5. Pretty easy to get into range if you eat less or cut carbs right out....but to adequately feed baby you actually can't do that. If anything I'm not eating enough at this point as have already lost a kg this week, so it's a hard balance to strike. Plus from what I hear, the challenge with gestational diabetes is the changing pregnancy hormones means that what you find can work for you one week (in terms of being within the blood sugar range), can be very different the next week, as your hormones increase. So basically my OB thinks I will be on meds at some stage, even if I can manage to control it with diet right now. We will see, whatever is best for Baby Bean, works for me.
• Got a be a silver lining to this latest challenge right? Yep there is. I am SO much more aware of what I am eating now, and haven't touched anything remotely sugary in over a week now.

So continuing with the good news.....with this latest discovery, I've been eating and subsequently feeling a whole lot better. I think I must have had gestational diabetes for the last few weeks, and with the strict change in diet, I already feel like I have more energy and am generally just feeling more positive. So much so that I felt well enough to go back to work this week too :-). Obviously I am still taking it easy in light of the incompetent cervix and cerclage, and will also continue to be closely watched by my OB (still at least once or twice a week), and now also by the MFM team at the hospital (who will monitor the diabetes and impact on baby and me). I also won't be doing any long walks or over doing things physically. But it's good to feel like I'm up to being up and around though :-)

26w5d

26w5d

26w6d

26w6d

Having just crossed over the 27w mark, we are of course now starting to get excited about Baby Bean's arrival :-). I'm starting to move past just the 'hopeful' stage, and genuinely feel this might actually happen for us! Our little man is still largely unaware as yet, although we have read a few books on the subject and we talk about a baby in Mummy's tummy. Conceptually not sure he's able to fathom it though. Anyway, I'll finish with a shot of him languishing on Baby Bean's gorgeous new quilt (lovingly made by her Granny).

Baby Bean's new quilt!

 

 

 

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Nate challenges himself physically at Bear Park

April 2016 - A monthly update written by Mo from the Kea Room at Bear Park, about our gorgeous wee man....

During the month of April we had the pleasure of meeting with Jenni, Nate's mum and she gave us an overview of the aspirations that her family have for Nate and some of the challenges that he may face due to his syndrome. Nate has continued to flourish in the Kea room and his willingness to communicate with us and his peers is clear to see every day.

Looking back at some of Nate's previous learning stories I can see he has a love of music and an adventurous and determined nature when it comes to pushing himself physically.

Last year the teachers at Bear Park had a professional development evening full of fun activities as a way to enrich the provocations for physical exploration. Physical development and motor skills are movements that are an important aspect of human growth and development. We discovered that there are five main areas that connect and link all learning abilities and skills that can be learnt. These are balance, eye-hand & eye-foot coordination, locomotion, eye tracking and fitness. We will continue to foster Nate's interest to challenge himself physically and encourage his independence in these areas also.

One morning in April Nate joined me outside. He clambered up one of the lower wooden boxes and reached the wooden plank that was positioned at an elevated angle between the low box and higher box. Nate paused and gestured and made vocal sounds. "Okay, I'll help you" I said taking Nate's hand and helping him walk the steep plank up to the high box where the monkey bars are. Once there he stood for a while looking around and wondering what to try next. After a few moments he held out his hand towards me again and wanted me to help him back down again. Krish was ahead of him on the plank and was carefully making his way down on his bottom. I tapped the wooden box and said, "Nate look at Krish. Sit down." Nate then sat down and eased himself towards the edge of the box. I took Nate's hand to steady him and encouraged him to move onto the plank. However as soon as he had hold of my hand he stood up again! This wasn't quite what I was trying to achieve but nonetheless I helped him onto the lower box safely.

Once on the low box Nate made his way towards another plank that extended out towards a large tractor tire. It was horizontal and not far from the ground. Nate looked up at me and I said, "You can do it by yourself Nate. Look, hold out your arms for balance" I demonstrated this to him. This time I moved a few feet away from him too, so that he wouldn't be tempted to grab my hand as a safety net. Nate then bravely stepped onto the plank and steadily and carefully crossed it. "Well done Nate! That was great and you did it all by yourself!" I praised him. Having reached the end of the plank he held his hand out to me once more. I moved just out of his reach on the far end of the tractor tire and reassured him he could keep going. Nate steadily made his way around the tractor tire and jumped off. What an accomplishment! Great work Nate!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Baby Bean's eventful journey to date

I'm really not quite sure how to start this blog update, or for that matter, how it will end. It's been on mind to write it all down, as it has been quite the journey so far, but at the same time I don't want to jinx things! Our Baby Bean couldn't possibly be more wanted and more loved already, but our journey to meet her has been quite some!!

Perhaps we shouldn't be surprised about this eventful journey, given the experience that we had with our gorgeous Nate - both his entry into this world, and his and our subsequent challenges as a 'special needs family'. But then again, Nate's diagnosis of Trisomy 9 Mosaic is quite literally 'one in a hundred million' - a completely random, and super-rare occurrence - so why would we possibly think that a second time round would be any less challenging?! That just doesn't seem to be our way!

So without wanting to make our story to date too long or too emotive, we can safely say that Baby Bean has been on our minds for sometime. In fact if things had gone as we intended, then Baby Bean would have arrived not long after Nate's second birthday, and not as Nate approaches 3.5years this August.

Within our Baby Bean journey, we have experienced four miscarriages. The first was so early in the piece that it almost didn't register, while the second and third although still pretty early, caused the expected anguish. That might be a bit of an understatement. The third was pretty upsetting for me, and I spent a weekend in tears and a lot of time beyond that in quite some thought and contemplation. While we obviously knew that as an older couple we had a higher risk, it seemed unfair to have both a child diagnosed with a super-rare and completely random disorder, and then be unable to progress a second successful pregnancy.

Naturally at that point, we did some research and also had a whole bunch of tests. However no reason came of the miscarriages. Just one of those things, and likely just reflective of the higher rates of miscarriages associated with being of an older age. Pure and simple. The advice given? Just keep trying until you quite literally find a golden egg.....or embrace science.

We opted to embrace science, and that in itself is a story. But to cut a long and complicated story short, we progressed with IVF supported by pre genetic screening (PGS). PGS basically screens embryos on their genetic health, and therefore significantly improves pregnancy viability. After our first round, we were super excited to find ourselves pregnant, and confident that we would soon have a new addition backed with all the benefits of fabulous specialists and modern day science! Our second baby was due to be born on April the 21st, 2016 - which seemed even more special and appropriate as April the 21st had been Nate's original due date (prior to his early entry into the world on March the 9th 2013). Sadly though, at just 8 weeks in-utero, our wee bub was found to have no heartbeat. Pretty devastating, as the IVF journey is not the easiest to go through, especially when you lose your precious gift. What followed in terms of treatment at that point is pretty standard I guess and not much fun to expand further on, suffice to say pretty heart-breaking.

And so came IVF round two, and the successful news of Baby Bean. We were reluctant to share our news, given our history, and spent the whole of the first trimester pretty much on tender hooks. We successfully clocked the heartbeat stage (6-8 weeks) and as the first trimester progressed, we started to feel more hopeful. We had registered with AOC again, and they had us on regular fortnightly checks given our history (although I think at that point, this was more to help ease my anxiety than for any other reason, as in reality there isn't much they can do should something not be right). Every time we went in, I'd be holding my breath until we heard the heartbeat. But the weeks went on and everything seemed to be progressing well.

Well right up until just on the twelfth week that is, when I started bleeding. We were away on holiday in Omaha, relaxing with Nate and my folks when it happened. That prompted a trip down to Warkworth for an urgent scan. We were told that this was the result of a small sub choronic haematoma (commonly referred to as a SCH bleed), which is pretty unusual (that figures). We were told that a SCH bleed can lead to miscarriage depending on it's extent, it's placement and it's growth, OR can be simply safely absorbed back into the body. So what to do? Nothing, wait and see. Excellent I thought, I'm great at just waiting - not.

As it turned out by our follow-up scan in 12.5 weeks, which also happened to be the all-important nuchal scan, the SCH bleed seemed to be gone and Baby Bean was measuring well! Phew! What a total relief - the first trimester was over and we were through the major miscarriage risk time. You can see Bean's pic without our earlier post - we just neglected to mention the associated drama in that earlier blog.

Around 15 weeks, we announced our pregnancy, and we started to feel a whole lot more comfortable that it might actually happen for us! We knew from the PGS testing, that we were having a little girl and we were greatly excited about her impending arrival. Our follow up 16 week scan showed everything was progressing perfectly :-).

The next milestone in our journey was the 20 week anatomy scan, which took place on Wednesday the 30th March. Baby Bean measured well - everything was perfectly in order with her estimated weight of 328g (putting her in the 60% percentile for her gestational age). Here she is....

The less welcoming news on the day though, was that my cervix was apparently shortening. At 16 weeks the length was 2.9cm, while at 20 weeks it was 2.7cm and had some signs of funnelling. Comparatively with Nate, it had been 3.3cm at 15.5 weeks.

AOC called me the next day (Thursday the 31st March) and said that they were referring us to the Maternity Fetal Medicine (MFM) at Auckland Hospital, and that someone would call with an appointment time for me. They reassured me that anything above 2.5 was okay, although still considered short for 20 weeks and worth a check with MFM. Naturally I googled for more. I quickly learnt that shortening and funnelling of the cervix is normal with pregnancy, but not typically until 35weeks and later. Shortening and funnelling at around 20 weeks brings with it a significantly increased risk of pre-term labour, and depending on the pace of shortening, this could mean labour pre viability (approximately 24 weeks). Scary. Oh and wouldn't you know it, apparently that this is rare - happens in about 1% of pregnancies. Yip that would also be right!

By the Tuesday the 5th of April, I had yet to receive a phone call, so I followed up. AOC suggested I come back in for an appointment and scan on the Wednesday, advising that I would see the MFM team the following Tuesday (12th April). Unfortunately the Wednesday scan showed that the cervix length had already further shortened to 2.2cm, and the following day I received a phone call asking me to come to MFM that very afternoon. Late that afternoon, the MFM team recommended I have a cerclage placed first thing on Friday the 8th of April and also start progesterone. So at 21w1d (Friday the 8th of April), I was back at the hospital at 7.30am and underwent the day-surgery.

Recovering afterwards, waitng for feeling in my legs to come back!

While it went absolutely fine, it struck me that with our last pregnancy, I was fine and Tadpole was the risk, while with this pregnancy, Bean was absolutely fine and I was the risk. Google put the odds of success of preventative cerclages at 80% (usually placed 14-16weeks), and between 40-60% with emergent cerclages. There just weren't any guarantees, sometimes they worked, and sometimes they failed.

I was worried, and three days of googling while recovering on the couch, really didn't help that! Robin kept telling me to stop - the googling that is. I'm not sure that would have ever been possible, I like to know the facts :-). He would have had to turn the internet off quite frankly. But I was really pretty stressed and worried about it - it's been a super long journey to get this far, and I was terrified we might lose Baby Bean. Nate kept me company throughout though - here I am hanging out with the little man on couch-rest, while we waited for the Tuesday the 12th follow up appointment.....he was only too happy to cuddle with and entertain his Mummy (along with his iPad :-))...

We had a follow-up on Tuesday the 12th back with the MFM team at Auckland Hospital, and the specialist said the cerclage was holding up with no visible change. Over time (and that's the unknown, as everyone is different), some women continue to funnel right down to the stitch, others find the cerclage holds, while a rare few also seem to get even better measurements with the cervix stabilised and progesterone support helping. To not have funnelled further at this stage was a relief, but I was still in tears while in with the specialist and afterwards (that's the less emotive and favourable way of explaining it - truth be told I was a bit of a blubbering mess). The level of emotional anxiety building up to the appointment was a bit intense. Actually most of the past week has been!

 

I also knew that we needed to avoid any funnelling until viability stage (approximately 24-25 weeks), because at least then Bean would have a fighting chance. And so at just 21.5 weeks, that meant bed rest with a goal of reaching 25 weeks. After that, we could go back to normal living (albeit no Saturday morning walks as we used to do, avoiding stairs, or just generally trying to do too much), and keep our fingers crossed. Unfortunately the procedure comes with no guarantees - we were told that if we got past 25 weeks, we could just as well get to 38 weeks. (Although my googling shows that the cerclage success stats (the stats I noted above), are based on reaching 37 weeks, before the cerclage fails. Shoot, after a 33w6d'er last time, we'd happily take a 36 weeker! Here's hoping we can be so lucky).

 

And so here we are back on the appointment roller-coaster - twice weekly visits with AOC, a weekly scan, and scheduled follow-ups back with the MFM team at Auckland Hospital. Outside of that, bed rest at home, weight and pressure off the pelvis. I've been fortunate enough to be able to keep up with work (mostly) through managing emails and phone meetings at home. It's not completely ideal, but helps keep me sane and stops me worrying about what I'm not getting done!

 

So updates on all the follow-ups...

• On the 18th of April (22.5 weeks), I had another tummy-scan, followed by an AOC visit. The cerclage seems to be holding (although not officially measured, for fear of aggravating), and they are pleased with how both I and Baby Bean are doing. Bean is measuring pretty much bang on average, and sitting at around 440-450g at this point.
• A further follow-up appointment on Thursday 21st April (now officially 23 weeks), shows that we seem to be tracking fine, although again that didn't include a proper measurement (as that in itself can cause an acceleration of issues or irritation that can prompt contractions, so not worth the risk to do too often). But the big appointment is timed for this coming Tuesday morning, back at Auckland Hospital with the MFM team, followed by AOC. We expect that to give us more insight as to how we are going and what the likely risks are from here.
• Well the big appointments of Tuesday the 26th of April came and went...and long story short...we are still on bed rest until we hit 28weeks. Baby Bean is looking brilliant, bang on all her measurements and growing really well, and the cerclage is holding up well at this point. However my OB said we have a 50/50 chance of being hospitalised before 30weeks, if I don't take it easy now - but of course it's all very unpredictable and unknown, I could well be admitted even with taking it easy! Anyway end result....I'm allowed to work from home, but no heading out and about, no stairs or anything physical really. A light amount of up and down occasionally throughout the day, is pretty much the extent of it. Oh and twice weekly AOC checks, along with weekly scans, and continued progesterone. And from 28 weeks, THEN apparently we will get to do/be 'normal' - back at work, allowed some short walks, out and abouts permitted. Bring on 28weeks and 90% viability odds! (Although this week, we clocked over on to 24 weeks on the Thursday, so thankfully we're at least at 50% now).
• Follow up appointments on Friday the 29th April, Monday the 2nd May, and next big scan and appointment scheduled for Thursday the 5th (when we clock over 25 weeks!)......and of course loads more appointments still to come. So for now, we are ALL FINGERS CROSSED! Watch this space for updates.....

Me at 24w3d with Nate

Nate at 3y1m, negotiating one more time along the wall!

Nate helping Daddy clear the lawn