Momentous Occasions 1,2,3,4

I was meant to write this next post on Christmas and our summer holiday.  Promise, it is coming, but I have way more exciting things to share about today!

Last week was one featuring numerous momentous occasions.

Isaac hadn't used his walking frame since before Christmas, so we gave it back to the Physio!  This means that Isaac is officially walking independently.  It was a surprisingly emotional moment, and I was soooo proud of my little guy.  I guess it felt like the end of an era, with unimaginable possibilities on the horizon.

Feeding a friendly duck on the front lawn

Later in the week, we were invited to speak at a NICU staff training meeting.  It was great to see some familiar faces from the time that Isaac spent in the unit. And to have Isaac show off his walking and speaking skills.  Some of them remembered how sick he had been, and were almost stunned at how well he is doing.  It's also quite amazing the extra bits of information you pick up when talking to people.  A year ago, I found out that Isaac had been one of the longest resuscitation that had been performed in the NICU.  This time, I found out that a contributing factor to Isaac's outcome was because one of the neo-natal consultants was present in theatre when he was born.  He was able to get top of the line care immediately after his birth.  She had to use the oxygen at a much higher pressure than is normally used, which did compromise his lungs.

Check out my new glasses

Yep, I'm a showoff!

Next up was getting Isaac glasses.  He's had a slight squint (cross-eyed).  We'd been to the ophthalmology department at the hospital a number of times, and finally before Christmas they decided that he needed to see the specialist.  Upon seeing the specialist in the new year, he recommended that we get glasses for Isaac with the intention that it would correct the squint.  It was really easy to sell him on the idea of wearing glasses, as I wear my a lot of the time, so Isaac was quite happy to be just like mummy.

Bubbles and water wars

And last but not least, Isaac's third birthday.  We celebrated with a "bubble" party and had a mini water theme park set up on our front lawn.  It makes a nice change, to have a birthday party in the mild of summer - Reuben's birthday is middle of winter, so we always have to plan for an indoor activity.  We had a great time with friends and family celebrating with us.  It's amazing to think what we've been through in the past 3 years and what a blessing our boys are.

2012 Ultimate Blog Party

Sometimes it helps, just to let your hair down and meet some new friends.  In the week or so that I've been blogging for, I've visited a heap of new blogs.  This is a great chance to find new blogs from others on topics that you are the interested in.

If you've arrived at my blog through the Ultimate Blog Party, you're here at a great time!  I've only just started blogging - it's been a little over a week, so it shouldn't take long to catch up on what's going on in our family (unfortunately, the majority of my initial blog disappeared, so I've rewritten most of it, but it isn't as well written as it was originally).

Just a quick intro - I'm Tui, mum to Reuben (aged 5) and Isaac (aged 2, born with Hypoxic Ischemic Encephalopathy Grade 3 and recently diagnosed with cerebral palsy), and married to Phil.  We live in Christchurch, New Zealand, so in addition to the challenges of raising my gorgeous boys, we've been dealing with 19 months of earthquakes (more than 10300 of them!).

How did I choose the title of my blog?  As a kid, Mum sometimes used it as my nickname.  As for the by-line, I thought that maybe I was being kind of crazy in starting to blog, it's always chaos around here (between family, work and ongoing earthquakes), and yet I'm still quite a normal, rational individual (I think I am, anyway).

What's happened between then and now?

After we got home from NICU, Isaac continued to show progress.  However, we still didn't know what we were going to be faced with over the coming weeks, months and years.  A really important part of his ongoing care was through an early intervention program, which works in conjunction with the hospital to ensure the best outcomes possible.

There are four options for early intervention care in our city.  We couldn't get into The Champion Centre, which is near our home, and has a fantastic reputation.  In fact we only had one option, all of the others were full.  I guess the benefit of the program we ended up under, was that they came to you, instead of you going to them.

Reuben (4 years) and Isaac (6 months)

When Isaac was 14 weeks old, I went back to work part-time.  Sometimes you just gotta do what you gotta do.  So he was in the nursery at the same preschool Reuben was at.  This was great, as it meant that Reuben could pop over and visit his little brother.  Also meant that I only had one drop off and pickup each day.  Reuben just adores his little bro.
He was seen by the speech language therapist and developmental therapists until he was nine months old.  At that time he was discharged from that part of early intervention because he was less than 25% behind a typical child.  I wasn't very impressed, but figured that if there were problems going forward he'd be able to get more help. 

Reuben (4 1/2 years) and Isaac (12 months)

So we did the appointments, and Isaac made really good progress.  When he first laughed, the sound was awesome, and the feelings that it generated were almost overwhelming.  Fortunately he has been able to eat regular food, although he doesn't do well with anything that requires much chewing, and has started talking.

Physically he has made steady, albeit slow, progress.  Watching him learn to roll over, sit, developing through to commando crawling, bum shuffling, and then back to crawling.  It was progress, but  I was starting to wonder if he would ever walk.  I know that I should have been grateful that he was progressing, and we weren't facing worse case scenario. 

Isaac (17 months) at preschool

So, two months ago when we had our appointment with the Neo-Natal Consultant (NICU babies usually get "upgraded" to Paediatrics between 2 and 3 years of age), I decided that it was time that we got some action on Isaac's development.  I went in with quite a list of things that I wanted to have checked out.  Since then Isaac has had an EEG to determine if he is having absent seizures, seen an opthomologist for possible lazy/cross eye.  He drools quite a bit,  I have found that he doesn't like eating food that has to be chewed very much and a lot of his words are difficult to understand.  We are currently waiting on a referral to speech language therapy.

Isaac has gotten to the point where he can stand if he's leaning against something and walks around holding onto furniture.  If he tries walking by himself he is very unsteady.  The issue is that the brain damage he suffered is in the area that affects balance.  He is now seeing his physiotherapist more regularly and got a walker about 3 weeks ago.  This has made an enourmous difference to his walking, balance, social interaction and confidence.  He loves the independence it's given him, and can't get enough of going to the mall.

First day of cruising at preschool with his walker

There are currently vacancies at the Champion Centre.  Tomorrow there will be a meeting to determine if we can get Isaac in.  I'm praying that he will be accepted, as I believe that they will help him to progress even further.

Where to Start?

Where to start?  I've been contemplating writing a blog for a while now.  Finally I decided, why not?  The worst that can happen is that no-one will read it.  Who knows what is going to end up on my posts, but fit's going to make for an interesting journey.

I love my boys - all 3 of them.  You know it's weird, but I never thought that I'd be a good Mum.  With everything that we've been through over the past few years, I think that I have changed my mind!

Reuben was born in June 2006, when we were living in Napier.   My Dad, who lived in Ashburton, was diagnosed with colon cancer about a month before I got pregnant.  He passed away, when Reuben was 5 weeks old.  The really sad things is that Dad never got the  chance to meet his first grandson.

As a baby, Reuben suffered from reflux, colic, and urinary tract infections.  Not exactly plain sailing for a new mum with no family around for support.  By the time he was 6 months old, Reuben had been to 2 funerals, a wedding, a 21st and had travelled as far north as Auckland's North Shore, and as far south as Timaru.  We even took him camping in the Coromandel for our Christmas holidays.  He was a fairly well travelled little man.

In March 2007, we decided to move back to Christchurch.  Most of our family was there
I've found out that somehow the rest of my post has been deleted, arrgh! Even though it posted ok in the beginning :-(
Here's some of the rest of the story...

Having had a normal healthy pregnancy, we were completely unaware of what was about to happen when baby Isaac was born.  It was Wednesday 27 January 2010, 1 week past due date and the first that we knew that there were any problems, was during a contraction when his left foot appeared.  I have written this account merely to give you the opportunity to find out in more detail what we have been through.

I had been having middle contractions during the morning, and as my midwife was at the hospital with another client, I was seen by the locum midwife (whom I had seen a couple of times during my pregnancy) for a scheduled appointment, just after lunch and everything was fine.  Later in the afternoon, the contractions intensified, and I felt uneasy about something, so called her back.  I had text Phil, to ask him to pick Reuben up from preschool on his way home from work.  But a half hour later phoned him and said for him to come straight home.  I phoned preschool to let them know that someone would be picking Reuben up, but didn’t know who or at what time.  The midwife and Phil arrived at our place within a short time of each other.  It was at this point that Isaac’s left foot presented.

As soon as we realised that it was a foot, Phil was instructed to phone for an ambulance. The midwife called for backup from another midwife who was just around the corner.  Poor Phil, he was getting instructions from left, right and centre.  Bring gear in from midwife’s car, phone my sister to pick up Reuben, get Reuben’s car seat and back pack out for my sister, hold my hand during another contraction, etc.  The ambulance arrived, but parked on the street, and the crew carried their gear up the long driveway into the house.  When it was established that we needed to get to hospital, they were walking back to the ambulance to get the gurney to bring up and take me out, but the other midwife went out and told them to get the ambulance up the driveway pronto (or words to that effect).  I was able to walk out and climb into the ambulance between contractions.

As we were about to pull out of the driveway, the driver and midwife were discussing whether we needed to be travelling with lights and sirens (apparently, they are only allowed to travel with lights and sirens in life and death situations).  So, in peak hour traffic (5:10pm), it took 12 minutes for the ambulance to get from our home in Parklands to Christchurch Women’s Hospital (CWH) with lights and sirens.  When we arrived at the hospital there was still only one foot out, but by the time that we got up to the operating theatre, both feet were out.  This meant that they were no longer able to perform a caesarean and the baby had to be delivered naturally.

There was a myriad of people in theatre including Consultant Obstetrician and Registrar, Anaesthetist, Neonatal staff, plus Midwives.  Within 5 minutes, we got to the point where baby’s sacrum had been delivered (the lower part of the spine where the tail bone is – basically his bum was out), but he got stuck.  It is at this point that the cord would have been compressed, and we don’t know how much oxygen was flowing through.  After a large episiotomy was performed, and things were still not progressing, the decision was made for a general anaesthetic to be administered so that a forceps extraction could be done.  However, there was difficulty with the general anaesthetic, and problems intubating and getting me stabilised ready to proceed further.   Another Anaesthetist was called in to help at this time, as well as the Consultant Neonatalogist and Consultant Anaesthetist.

12 minutes later, at 5:43pm, Isaac William Brewster was born, weighing 4.140kg (9lb2oz).  He was pale and floppy and was immediately intubated.  Then he was taken to Neonatal ICU Level 3 in a critical condition, where he was put on a ventilator but also required CPR and several doses of adrenaline.

In the interim, Phil had arrived at the hospital and was waiting outside the operating theatre.  When the baby was born, Phil was told that they didn’t know how long he had to live; it may be just minutes or as much as a few hours.

Isaac was diagnosed with severe Hypoxic Ischemic Encephalopathy (HIE) grade 3 and placed on the criticool machine, where he was kept in a hypothermic state (33.5^oC compared with normal temp of 36.5 ^oC) for 72 hours in an attempt to reduce the impact of the brain damage which he suffered.  This is a new treatment protocol which has only been around for a couple of years and was researched here in NZ.  Up to 60% of babies, who suffer this level of insult, do not survive and those who do are often severely disabled, can be deaf or blind, and require wheelchair and other support, as well as full time care for feeding.

He was also placed on a brainz monitor that has 4 small probes inserted just under the skin on the head, to monitor brain activity and seizures.  A nasogastric tube was inserted for feeding, catheter and two other umbilical lines for blood pressure monitoring and fluids, plus a probe on his foot to measure oxygen saturation, pulse and heart rate.  He required medication to keep his blood pressure stable, anticonvulsants for seizures, as well as antibiotics and various nutritional inputs.

The next day (Thursday), we decided that we needed to name our wee man, as we hadn’t done so up until that point in time.  When we told Reuben that we were going to call the baby Isaac (meaning “he will laugh”), Reuben looked like he was ready to burst into tears and told us that the baby wouldn’t like that name.  So we told Reuben that he could the baby Zac, which was much more to his liking.  However, now, if anyone refers to Isaac within Reuben’s hearing, they will be “corrected”.

That night his breathing had improved to the point where the doctors extubated him and he was on nasal prong oxygen.  However after 3 hours he required reintubation and support from the ventilator.

At 48 hours, Isaac had an MRI scan to determine the distribution and severity of the brain damage.  Just transporting him there and back was a logistical hurdle - all of his tubes etc had to be put on “extension leads” because of course there can be no metal in the MRI machine, and he was kept “on ice” so that his body temperature would remain low for the two hours that he was not on the cooling machine.

When the results of the MRI came back, they showed some brain damage (focal alterations in the head of the left caudate nucleus and more posteriorly in the basal ganglia).  But brain damage can work a bit like a bruise, where all of the impact is not initially visible, and as the results weren’t as severe as anticipated, he was to be rescanned at approximately day 7.

His body was slowly warmed back to normal temperature from 72 hours.  On February 2, he was removed from the brainz monitor.  We also got our first cuddle that day, what an incredible feeling that was.  The following day, he was taken off the ventilator and breathing on his own with nasal prong oxygen.  As he did not have any gag reflex and was not swallowing, regular suctioning was required to remove secretions from his mouth.

Day by day we noticed small improvements in Isaac.  The next day he was beginning to cough to clear his mouth, but still required some suctioning.  He was feeding two hourly via the nasogastric tube.  The follow up MRI scan showed no progression of the initial impact on the brain.  So now it’s a case of wait and see what Isaac is and isn’t able to do.

Gradually Isaac’s muscle tone is improving, and he is becoming more alert.  Isaac passed his newborn hearing test, but will be followed up due to the nature of his birth.  He is feeding less often with increasing volumes.  By 13 February the nasal prong oxygen is removed and he is breathing completely on his own.  Three days later, he has begun to breastfeed.

At 3 weeks 5 days, on Mum’s birthday, Isaac is discharged from hospital!  What a milestone, and he has completely amazed the hospital staff in the process.  Although we still have a long road ahead, the long term prognosis is nowhere near as dire as initially expected.  Each milestone will be eagerly, yet apprehensively, awaited.  We continue to see improvements in him, and if you didn’t know his history, you couldn’t tell by looking at him, what a traumatic start he had to life.  Isaac really is a wee miracle.