More Monday news

Matthew has continued his negative fluid balance today, and his most recent weight showed he had lost nearly 200g, putting him under 3.1 kilos now.  To be at the 50th percentile (can’t you tell I’m a stats person?) he should be around 2.3 kilos for his length and gestational age.

We’ve been through his recent chest x-rays with the Dr, there has been some improvement in some areas, and some not quite so good results in other areas.  But the edema is definitely reducing on the x-rays.  He has an upper left collapsed lobe as well as patchy atelectasis (lack of gas exchange in the lungs).  The chest ultrasound showed no excess of fluid in the lungs, which to us is good news, as they don’t need to drain his lung(s).

He’s definitely having a better day today.

Matthew, what are you doing?

Well, it’s been a couple of days since I posted anything, and there is rather a lot of news about Matthew to tell you about.

First of all, as of midnight just past, Matthew reached a negative liquid balance.  What this means is that he has finally peed out more than he has been given in liquids since birth.  OK, it’s not by much, a negative balance of 0.72ml, but it is a start!  Last night, after I returned from a brief trip back to Kelowna, he seemed so much skinnier than when I had last seen him on Friday afternoon.  His head was egg shaped (not a round ball), and he had “definition” on his arms!  By this morning, he was even skinnier.

But, this good news has come at a price.  On Saturday, while I was some 400km from him, Matthew decided that it would be fun to give his doctors a scare.  So he spontaneously collapsed one of his lungs.  A couple of shots of surfactin later, a switch back to High Frequency Ventilation, some paralysing agent (again), and he was stabilised.  Apart from the antibiotics that were restarted as he came back positive for a Staph infection of some kind.

And this morning, at rounds, with about 3 senior neonatolgists, lots of junior doctors, nurses galore, discussing his case, they are going to perform a chest ultrasound on him, and culture his urine and blood and they think he still may have an infection, possibly pneumonia.  So, all in all, Matthew, what are you doing?  I’m docking your pocket money!!

Honey, they shrunk our son

Yet again, Matthew appears to be shrinking, which is great to see.  From a girth (around his belly button) of 38cm a few days ago, today he was 35cm.  Overall, he is moving more (though that could be the morphine & sedation he is being weaned off), so he is feeling his tube more and he doesn’t like it!  He’s had his catheter removed, so is peeing into a nappy (OK, diaper..) and occasionally having an “accident” so the whole bedding needs to get changed.  His oxygen needs is coming down (24% when we left him for our supper), and he is gripping our fingers tight when we are there.

I’ll post some photo’s a bit later, and you’ll be able to see the difference yourself.  He’s still got a lot to lose, but he is definitely becoming more baby shaped – we even saw his hips today!

Thanks everyone for thinking of Matthew, and keeping him in your prayers – he is making positive progress, and we hope and pray that he continues to move in the right direction.

Who shrunk my son?

Finally, after 14 days a real piece of good news for us.

Matthew’s urine output significantly picked up the other day (over 400ml in a 12 hour period), that the following morning he looked considerably less puffy.  Jen & I were so pleased and proud for him!  His uring output remained quite high over the next day, and every day he seemed just a little less himself.  They are starting to wean him very slowly off his sedation drugs and morphine, this will probably take a week or more to wean him off.  He is coping well on the ventilator, and with the sedation wearing off he will start to breathe for himself we hope soon – a big milestone for us will be him coming off the ventilator.

Matthew was weighed this afternoon – on the 18th he was 3526 grams, today he was 97 grams lighter – a little progress in the right direction!

Jen and I took a trip to tthe Vital Statistics Office on Monday, so Matthew is now registered, has a PHN, SIN, RESP and whatever else the government does for newborns these days.

My laptops currently dead at the moment, but I will do my best to keep the photo’s coming.  Did you see the Fathers Day card with Matthews footprint on it?

My first Fathers Day

Over the weekend, Matthew didn’t do quite so well – his urine output was still way to low, and he kept “de-satting” (lack of oxygen).  So, they have had to up his hyrdocortisone, but the good news on Fathers Day (check out the photos) is that his urine output – with pharmacological help – is way up – from 2.2ml per kilo of birth weight to 8.9ml per kilo of birth weight.  He’s still taking on more that he putting out, but that may change over the next 24-48 hours :)

It’s monday morning now, and little Matthew seems much better – his urine output as mentioned is up, and overall he seems better.  But I’m not a doctor!  They’re still concerned for him, and running all sorts of tests on him still trying to figure out what is wrong.  Right now, they are doing another head ultrasound and an ultrasound of the kidneys.

Jen and I are off today to register Matthew at the Vital Statistics Office and all the other legal pieces we need to do.

Some Good news for the Weekend

Thursday evening, Matthew’s doctor spoke to us at some length about Matthew’s condition, about how moving him onto a traditional ventilator should help him, that they still have no news about what caused his Hydrops.  While Matthew will take weeks to get better, his condition could deteriorate in minutes.  But overall, Jen and I were a little happier that at last Matthew was making even more small steps in the right direction.

After a fraught 30 minutes or so when they changed the ventilator over, and wondered if they would have to change his tube (due to a leak), it was decided that they would not change the tube over – the risks outweighed the benefits, and besides, Jen and I were against it.   It was considered high risk to change as with all the swelling, it would be hard to put a new tube down his throat, it would have to be done in the OR with resusitation teams, neonatal teams, emergency trachyotemy, and all sorts of other scary sounding stuff.  We’re glad all the RT (respiratory therapists) were against it.

This morning, his condition seemed much improved.  He was stable, his breathing on the ventilator was good, he has tested negative so far for infection, though they are thinking they will have to change his central line soon to stop him getting a CLI (I even know what one of those is!).  Matthew had an x-ray this morning, and compared to two days ago, his edema seems to have reduced slightly – so we are very pleased abou that.  Still very early days, still in critical condition, but some positive signs of improvement. The breathing tube still has a leak, but will not be changed unless there is a medical need for it to be done.

For all of you that have left us comments, or sent us emails, and are thinking and praying for Matthew, thank you!

Thursday

I’m now back at the Children’s Hospital after about 18 hours in Kelowna to grab a few personal items to make our stay at Easter Seals hostel a little more comfortable.  We’re able to use a new programme from the BC Government, called “BC Family Residence Programme” that provide up to 30 days of accomodation for families (from outside Metro Vancouver area) who have children at a few select Hospitals in Vancouver.

Wednesday night was pretty rough for us and Matthew – he had a minor procedure on Tuesday afternoon (though not so minor for him) to remove some fluid from his lungs for sampling to see if this helped the Drs in the search for what was causing his hydrops.  WIth a little help he passed his first stool as well.  But by Wednesday afternoon, when I got back, Matthew was running a temperature and his heart rate was 170+, his blood pressure was low, and things didn’t look good.  But they gave him some antibiotics, and by this morning, his temperature was back down, his heartrate was good, and his blood pressure was back up.  He had a little more help passing some more stools (he’s now had two nappy changes in the last 6 hours), and he seems more contented than last night.  He is still in some discomfort, and he has not started to decrease in size yet, though – and this is probably me just looking for positive signs – his double chin seemed less pronounced this morning, his chest looked a smidgin smaller.  But his legs had got a bit bigger – so I guess the fluid just moved about.

Jen is just taking a well earned break now, she’s still recovering from the last 2 weeks,

Tuesday Blues

Yesterday evening, Matthew seemed so full of life – he was looking at us while I read him a story, and he was trying to breathe on his own.  But it did look like he was in some discomfort from time to time.

This morning, he looked a little larger than previously, which the Docs don’t think is good. They admit that while he is not getting worse, he’s not getting any better either.  By lunchtime he seemed peaceful – they had upped his sedation medication, as he was definitely in some discomfort from the ventilator tube.

I flew back to Kelowna this evening, leaving Jen with Matthew.  I feel so lonely here without them, and I miss Matthew terribly.

It’s been nearly a week

:(

I haven’t been able to take any pictures lately, as my camera battery ran out.

It’s hard to believe that it’s nearly a week since little Matthew was born.  In just this week we’ve had the joy of getting to know Matthew, of starting to learn his little ways, and the love that the two of us feel for him grows every day. In that time we’ve got to know a few of the nurses that have looked after Matthew in that time (Jan & Justine, to name a few) for a few shifts each.  Having that continuity has been great for Matthew’s care.

Matthew’s progress has been slow, but he is stable.  The doctors are in general pleased with his progress, but are worried that he is not getting rid of his water quick enough.  Today though, he has picked up his output, which is good news.  We’re about to head down to NICU to see him, and read him his goodnight story, and get the latest update on his progress.  Let’s hope it’s some more good news.

We’re expecting him to be moved out of his dedicated Critical Care Unit room in the next 24 hours to so, to the general NICU area.  We have mixed feelings about this – we’re pleased that he is considered stable enough not to need his own nurse 24×7.  But, we will miss Matthew having that dedicated support.  The CCU room is relatively quiet, and the lights can be dimmed – and we know that Matthew doesn’t like noise, and when we turn off the lights he opens – or tries to open – his eye(s).

Day 5

It’s day 5, and Matthew continues his slow and steady progress.  He’s still in critcal condition, but everyday we notice a little small improvement in him.

His night was so-so – after yesterday’s antics, we was moving too much, so they had to give him a paralysing agent again, and upped his morphine, as it looked like – from his vital signs – that he was experiencing pain.  So, this morning when I saw him, I was a little disappointed that he wasn’t awake like he was yesterday.  But at rounds this morning, it seemed very positive – the Dr seems to be treating Matthew quite aggressively, pushing him almost to get better, rather than waiting for Matthew and responding to him.

The dopamine to control his blood pressure was stopped, and Matthew responded well to that.  Jen has started expressing some milk, so they gave Matthew 3ml of this today – and when they checked his stomach contents, it had all gone, so they were extremely pleased about that!  He had a blood transfusion today, as he has had quite a bit of blood removed for all his testing.  But other good news we had today included the results from the chromosone and metabolic testing – nothing abnormal was found, it was all clear!  Yesterday’s ultrasounds all checked out normal for the head and liver, nothing new around the lungs, and confirming that the kidneys were working overtime and were slightly bigger than normal.  So for this evening, it’s keep everything as the same, stable, giving him some more breast milk for nutrition.  His swelling is slowly improving – today we saw the fluid had mostly gone from his fingers and toes.  He still has a lot of edema, and it will take a long time to dissapate, but we are heading slowly in the right direction.