Giving his Body a Break

We had a rough night.  

Mathew and I stayed by his bed all night except for a shower and a one hour nap from 3-4am.  When we were power walking back down to PICU I said to Mathew "yesterday was bad but today will be better". 

They didn't give us his blood results through the night so were anxious to hear how he'd improved.  Some levels were up but others were down.  Hunter has a 50/50 chance of survival.  Well Mathew and I decided to take that as a positive.  50% is still a pass right?  And besides, we'd given him a strong name, he'd be strong for us.

Hunter was making little cries which I was able to settle him and calm him, like a Mum should.  We thought this was a good sign, he had fight in him!

Later that morning Hunter was still having the apnaec episodes.  The Clinical Director came in to see Hunter and decided that his body needed to have a rest so they were going to put him on a machine to help him breathe.  Just to give his body a break.

It wasn't until much later we would learn what this was.  Life Support.

Today was not better.

Starship Childrens Hospital

We are in Starship with 8 day old Hunter.  How did this happen?  How did we get here?  What went wrong?  What did I do wrong?

At this point we still don't know what it is that is making him so sick.  

Starship is amazing and horrible.  I don't think I will ever forget sitting in the emergency department, Hunter was still in his capsule strapped onto the ambulance stretcher and a little boy about Coopers age (12 months) walked past towing a trolley with an oxygen tank on it.  This moment it all became real to me.  We were the parents of a child sick enough to be at Starship.

Soon we were visited by the Liver Specialist.  He gently told us that Hunters Liver was very sick and failing.  They were going to give him platelets as a "bandaid" for his Liver until they could figure out if it was the virus that was making the liver sick or if the liver was sick and making the rest of him sick.   

Next we were transferred to PICU, Pediatrics Intensive Care Unit.  A place that shouldn't exist or at least a place we shouldn't be visiting.  

We had to wait a long time while the doctors and nurses hooked Hunter up to all sorts of machines, they had him in just a nappy and I was concerned he would be cold.  The bassinette had a heated mat under him and a heater above so he wasn't cold.  It's funny the things you worry about when so much more major things are going on.

A room was given to us in Ronald McDonald House.  Would we be here for a while?  

Throughout the day we were seen by every specialist doctor they had.  Both of our families had arrived now so we had all the support we needed.  

Nobody should see their baby the way we were looking at Hunter.  

Mathew and I had not slept in over two days but we would not leave Hunters side.  We sat and talked to him and held his hand the whole day.  I would continue to change his nappies and wipe his mouth when he dribbled the sticky glucose that was being given to replace milk.

Later that day Hunter started having Apnaec episodes where he'd stop breathing briefly.  A mask was put over his mouth and nose and he was started on CPAP.  The mask was tight around his head and I hated it.  It was too tight. 

Hunter was having blood taken every three hours to keep an eye on his platelet count and to hopefully capture the active virus that was doing this.  

We still had no answers.

  

Waitakere - Day 2

Mine and Hunters first night in hospital was long and lonely.  I cried and cried.  I was phoning Mathew telling him I couldn't do it, it was too hard and I was scared.  He told me over and over that I could do it, I was strong and needed to be strong for Hunter.  We got through the night but Hunter had fed poorly and was increasingly hard to wake.

I expressed my concerns to the nurses that visited our room but as with the Dr at Apollo Centre my concerns were dismissed.  Just as I did the time before I pressed on and went with my gut.  Early that morning I asked to see a doctor.  I wanted to discuss Hunters condition and get some reassurance regarding his condition.  The Doctors were busy at that time but someone would be around by 8am.

8am came and went, Mathew had arrived by this time and also wanted to see a doctor as it was obvious to him that Hunter was worse.  I rang the bell to ask again to see a doctor.  13 minutes went by and no nurses came to see us.  I went out to find one myself to be told that the doctors were busy with other children and other emergencies.  My 8 day old son who I could barely wake  wasn't an emergency.  

Another few hours of waiting went by.  Nurses came in, looked at the machine administering Hunters medicine then left.  They didn't speak to us, they didn't look at Hunter.  Just looked at the machine.

That evening I was not letting Mathew go home.  My Mum was now down from Whangarei, she would have Cooper and Mat could stay with Hunter and I.  I needed the support.  Visiting hours had closed before we got to see a doctor - after 8pm.  The doctor who saw us said that Hunters condition was a far different picture to that stated in his notes and had she known this she would have seen him sooner. I was told to lay a complaint.  

By morning Hunter had a feeding tube up his nose and into his stomach.  He was on oxygen and had been booked in for a CT Scan of his brain.    

The scan of his brain showed nothing abnormal but we were told we would be transferred to Starship.

Mathews tears started now too.

Waitakere Hospital Day 1 - The Start

Today's plan was much the same as the previous days, family time.  Getting used to juggling two babies and a visit to the midwife to get Hunter weighed and checked.

The night before I had noticed a wee spot of infection on Hunters scalp which was the site where an electrode probe was put on his head during labour to monitor his heartbeat more accurately.  I had taken a photo of the sore and sent it to my midwife who said to go grab some Bactroban from the pharmacy and check it in the morning.

In the morning the infection was worse so I decided that on the way to see the midwife I would stop in and have Hunter checked by a Dr at Apollo Centre.  I brought up my concerns about the amount Hunter was sleeping while he was looking at his head.  The Dr I saw said there was no need for concern about the sleeping or the scalp infection.  I questioned this with him, reiterating his age of just 6 days and being pre term.  "He's fine, we don't like to give any antibiotics to babies so young" was his response to my concerns.  

My instincts told me something more was going on.  I listened to my intuition and took Hunter to Waitakere Hospital. 

I stopped in at home on my way and told Mathew what I was doing and for him to stay at home and look after Cooper, I'd be home soon.

At Waitakere I was seen quickly by a Dr who looked at Hunter and told me he'd need to take some blood.  At this point I broke down.  I was so upset, my son had already had blood taken the day after leaving hospital to check his Billy Rueben levels for Jaundice and it was traumatic, Hunter screamed and screamed and I didn't want him to go through that again.  A nurse came to talk to me and try to calm me and rationalise it for me, it was just a blood test to check for bacterial infection.  

I eventually calmed down enough for the Dr to begin taking the blood.  Hunter made small cries but nothing compared to a couple of days prior.  

An hour later the results came in showing a small bacterial infection so antibiotics would be started, by IV.  Once again the tears flowed and I was being comforted by a nurse, "is there any family who can be here to support you?"  At this time there wasn't.  I didn't want Cooper there and there was no one else to mind him but Mathew.  I was so scared and alone.  

A tiny line was put in Hunters arm.  He didn't cry.  I was doing all the crying for him.  I knew in my heart of hearts that if Hunter was admitted to hospital he wasn't coming home.  

More blood was taken next.  Then a Lumbar Puncture was done.  Then a catheter was put in.  Then we were admitted to the Rangitira Childrens Ward.

This is not how the first week of life is supposed to play out.

My Three Boys

Finally we were home!  Time to start our lives with our newest addition.  

Me and my three boys.  I was going to be super-mum.  

Quickly we organised the house to suit our two kids, basinette in the bedroom, nappies upstairs and down, wipes, cloths in case of spills.  All done.  

The first night I bathed Cooper and Mat minded Hunter, he'd slept most of the afternoon except for topping up his tummy.  Only one moment of chaos when both kids were screaming.  We sat back and laughed at this because it was exactly what we wanted - a busy house focused around our children.

Mathews Mum came over that evening and spent some time having cuddles with tiny Hunter.  I said to Fi about how he'd slept most of the afternoon which she replied, newborns sleep a lot and I have to remember he is pre-term, small, had a long labour and is a bit jaundiced.  I clearly remember saying "OK, so he's fine".

He was due to wake at about 8pm and he tended to stay up for a couple of hours cluster feeding so I was prepared for this.  It's funny how quickly you get to know your baby's routine.  It was nearing 9pm and he hadn't woken.  Normally I wouldn't wake a newborn for feeds but he was so small I thought I had better make sure he was eating enough.  I took of his nappy to make him wake up.  As soon as he was awake he was hungry and began feeding. 

That night he woke just twice.  What a good boy!

Day two at home.  We spent the day mucking around, did some grocery shopping as a family of four.  Took some fun photos of the three boys and just generally hung out as the happy family we were.

Day three at home things changed.

The First Days

Hunter is perfect.  He looks so much like Cooper did when he was tiny.  Hunters nose curved slightly to the right just like Mathews does, he had huge hands and feet with funny curled up toes like Mathew, he had big black eyes like Mathew and black like hair like him too.  Hunter was going to grow up to look even more like his Daddy than Cooper does.  I was so excited to watch my boys up, to see Mathew grow with his sons.  He is such a good Daddy, I felt so blessed to have these three amazing boys in my life.  Perfection.

My time in hospital with Hunter was great.  He was so loud and aggressive!  And what an awesome feeder he was!  When he was hungry he'd shout at me and jump on the breast and feed furiously.  I had problems feeding Cooper so I was very excited about the prospect of being able to breast feed Hunter successfully.  During my pregnancy breast feeding was the one thing I wanted to do differently to with Cooper. Another tick in the box.

Three days passed, I was healing well and was getting my strength back.  They still don't know what was wrong with me but the minute Hunter was born I was well again, not a single fever, headache or chill...

Hunter continued to be a dream baby.  Fed well, slept pretty good for as far as newborns go.  I would talk to him in the wee hours of the morning, tell him of the plans we had, I told him all about his big brother and his Daddy.  I told him I would always look after him and that I wouldn't let anything bad happen to him.  

The following day we were going home as a family of four.  We would go for walks to the park in the double pram, trips out with two kids in the back of the car.  I thought everyone should be jealous because I had two perfect baby boys and the best father for my children.  Life was so totally perfect.  

Labour & Birth

8th May 2013, 36 weeks

Wow I'm 36 weeks pregnant already!  Cooper was born at 37 weeks so I was hoping for the same, not long to go!

I hadn't been having a good week, was feeling anxious and sick.  A couple of days later I was a wreck. Fevers, chills, headaches and very emotional.  My Mum came down from Whangarei to help me with Cooper as Mathew couldn't stay home from work.  There was thing on my mind that was stressing me out as I neared my due date and that was "I haven't got Hunters' first outfit ready".  So, off Mum, Cooper and I went to get Hunter's outfit that he would wear home.  We had been out for about an hour, I was freezing!  My fingers and lips were blue despite us being inside a mall and me dressed in jeans, t-shirt and two cardies.  We decided to quickly find what we wanted then we'd get me home and warm.  In Farmers I couldn't choose the clothes.  I physically couldn't choose them.  When Mum asked me what was wrong and am I sure I'm not in labour I said "I'm not in labour but something doesn't feel right".  I couldn't pinpoint how I was feeling all I could say was that something didn't feel right.  

Mum suggested I contact my midwife.  I told her how I was feeling and she said, it doesn't sound like pregnancy sick but that I was just sick and should get myself to the Dr as soon as could. 

I made an appointment to see my Dr that afternoon at 4pm.  I had a temperature of 39.5, was freezing  freezing cold and Hunter's heart rate was pretty high.  I was given paracetemol to get the temp down and told to take off my pants and jumpers and wait for half an hour.  The time went by and my temperature went down but not enough so I was told to go to North Shore Hospital, my Dr would call ahead to let them know I was coming.

North Shore Hospital is where I would stay until I had my baby boy safe in my arms.

From this point on things kept going wrong and getting worse for me. 

After seven attempts a line was put in, blood was taken, urine was taken, an exam of my cervix was done several times, blood cultures were done twice and I even had a rectal swab done, had a chest x-ray and an ultrasound of all my organs and Hunter's amniotic fluid.  They did every test they could think of and everything with me was fine.  Although I was still very sick and my temperature could not be brought down there was nothing they could find that was causing this horrible fever.  At this point I was having contractions every nine to ten minutes.

Through the night the tests continued to no avail.  

I was worried about Hunter, his heart rate was still quite high but I was assured by my midwife and other hospital midwives that this was OK as long as the heart rate was consistently high.  If it started fluctuating from high to low that indicates distress.

On the 9th of May and my fevers and chills continuing a Doctor came and asked me if I wanted them to get things moving and induce my labour.  I asked the Dr what she thought was best which her opinion was to induce.  At 5:30pm that evening I had an induction and by 7pm I was having strong contractions every five or so minutes and fevers peaking every 20-30 minutes.  What a ride this was!  

10 May 2013 my waters broke at 7:30am.  I thought it was all on, it was like the contractions instantly got worse.  I had an exam at around 9am to see how I was progressing...I wasn't.  So many contractions, so close together and nothing!  I still had a 2cm cervix and was only just 1cm dilated.  After all that I hadn't done anything.  What a disappointment!  I was now exhausted and still battling the fevers and emotions.  It was at this point the tears really started, I felt there was no way I could push a baby out.  And how much longer would it be before I got to 10cm??  I told Mathew and Mum that I it was going to end up being a C-Section.

So, at 8pm on May 10 after nearly 49 hours of labour two epidurals and eight doses of the anesthetic off I went for a caesar.  In theatre with Mathew was with me, I was very scared.  I found it a difficult thing to process.  Having my big tummy cut open and my baby pulled out while I was awake.

Well, turns out that just as the epidural didn't numb me the anesthetic didn't numb me either.  So under a general I went.  

Hunter was born at 8:30pm on May 10 2013.  He was 6 pound 4 ounces and 49cm long.  He was very loud, breathing well and scored 9 on his APGARs. What a relief!  Mathew met him first and was given him a bottle to feed him.  A very proud Daddy.  

It was after 9pm by the time I met him.  He was just perfect and tiny!  In the days spent in hospital that followed I learnt thay Hunter was a strong, loud, hungry and wilful little boy.  He was to give Cooper a run for his money!

Everything was perfect.