Welcome

. . . in all seriousness, thanks for stopping by! This blog will no doubt evolve over time, and will include all sorts of content. My aim is to let you know what we're doing as a family, how I'm coping as the mum of a child with Cerebral Palsy, and a variety of other things too.

If you are the parent of a special needs child, I pray that you will find encouragement, hope and support within these posts. I'd like to get to know your story too, so be sure to leave a comment.

I hope you'll come back soon.



Friday, 30 March 2012

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 (33.5oC 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.

Stumbo Family Story

8 comments:

  1. Hello Tui,thanks for sharing some of your story,you sure deserve a medal for all the challenges you have gone through.Looking forward to reading more

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    1. Thanks for your encouragement :)

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  2. Keep it coming Tui, Look forward to the next installment. You are doing amazingly well with your 3 boys - Sue

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    1. Thanks Sue, I certainly have my work cut out for me

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  3. Reflection is always a healthy process and tends to provide either a cathartic moment or growth from the experience. You carry on, I look forward to the next chapter. Nicx

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    1. Nic, I'm hoping for a bit of both, and maybe to help encourage someone else who's facing challenges too.

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  4. Hi Tui, I'm so glad you started blogging, I look forward to reading your posts!!!

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  5. I thought I had commented here before! What an adventure you had, I cannot even imagine the whirlwind that your son's birth must have been. Thank you for sharing and thank you for joining the CP Connection :)

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