Merlin Jian Hellenius

Born Thursday June 9 at 25 weeks and a fighting weight of 1 lb 7 oz (670 g) & 34 cm

(Note:  this website covers the first six months of Merlin's life...  click here
for more recent news about Merlin)

Then

Now (early 2006)

Rob's hand and Merlin

Click here to meet the proud parents

 Older movies
(Probably good only if you have broadband Internet connection)

  Click here for newer photo albums of Merlin at home

  Here are older photo albums from Merlin's Hospital days

Click here to view the comments that people left for Gilly and Rob

Notes from Gilly... (most recent first)

January 30 2006:

It was a long morning.  I do not guarantee the accuracy of this information, as we're all quite tired and there was (as usual) a lot to take in...
But here goes.

Merlin has some hearing loss.  Both ears are pretty much effected equally.  We don't know the degree of hearing loss yet (more on this later) and we probably won't know for about another 4 months or so.

The sedated hearing test showed that his auditory nerve is not functioning properly.  He has Auditory Neuropathy/Auditory Dysynchrony (or Desynchrony) which is a premie condition.  Some people afflicted
with this develop other neurological pathways to get the information to the brain, this test does not show to what extent this has happened for Merlin, and this could continue to develop further.  The sedated test
also indicated that there was partial damage to the hair cells in the cochlea [inner ear].  Another test confirmed this, but again we don't know the extent of the problem.

Basically, we have to wait for 2 things.  First his hearing has to finish developing, and second he has to be old enough to actively participate in tests to indicate what he can hear. They have quite sophisticated ways of getting information from babies about 6-8 mos. old (corrected age, of course).

We will begin the process to get hearing aids to exploit whatever hearing development (and speech) we can.  He has to see an ear,nose and throat Dr. first, and if all goes well, he'll have aids in about 6 weeks.  If necessary, he could be a candidate for cochlear implants down the line.

We will also start pursuing early intervention programs.  There are a couple of different philosophies as to what is the best approach.

January 17:

Well it was a busy and happy holiday season.  I was curious to see how Merlin would stand up to all the visitors - I guess I shouldn't be surprised that he was still the life of the party long after his parents were flopped out on the couch.  Just give that boy 10 minutes of shut-eye and he's ready to snuggle and play for another 2 hours more.  Those of you visiting the website regularly will see that we haven't got any holiday photos up yet.  (Those that have digital copies should send them to Grandpa Kit for posting on the site). The big news is of course Merlin's debut as a cover boy (see the website).

We have many appointments for the end of January, including the plastic surgeon and a hearing test.  Merlin's over-all health is good.  But he didn't gain enough weight the end of December (he's not quite ready for turkey dinners yet) and so he is back on the oxygen during the days.  Not so much because he has breathing problems, more to boost his metabolism so he eats more.  This strategy is working.  He weighed in today at 4.73 kg (10 lbs 7 oz), which is a significant gain from his last weigh in.  Oh, I almost forgot to say - he rolls over now.  Both from front to back and back to front.  It's about a once-a-day occurrence now, so we have to start babyproofing the house now.

December 22 2005:

Merlin is a cover boy!  A prestigious British medical journal has used one of the earliest pictures of Merlin on the cover of their January edition.  Here's the link to show our boy on the cover of the January issue of ADC Fetal and Neonatal.  Click on the Cover illustration link to see the photo larger.

December 16:

Since Nov 21, we've been trying Merlin off Oxygen.  Initially, he was off for a few days, then his blood oxygen saturation started dropping and we had to put him back on.  Then we got the go-ahead from his Doctor to try him off each day, and only put him on as needed.  This meant oxygen at night for a week or so.  Since December 6, he hasn't needed any at all. We keep testing him, and his saturations are always
above 90%.  The final test that all was well, was a weigh-in at the Doctor's office.  He is now 4.2 kg (9 lbs 5 oz).  This keeps him on his growth curve.  Now Mom, Dad and baby all breathe easier.  Apart from meaning Merlin is getting healthy and strong, it makes life a lot easier around the house and for going out and about.  And just in time for holiday festivities, too.

Merlin would also like to welcome (somewhat belatedly) his new second cousins: Zoe, born September 13 in Ontario and Olivia and Lucas born November 22 in Oregon.  Coincidentally, all of whom were a little earlyish and smallish (but significantly bigger than Merlin).  We all look forward to meeting these cousins before too long.

Expect to see lots of great photos with great grandparents and great aunts and uncles after the holidays.  It's going to be a big family celebration!

cheers,
Gillian

November 19:


Merlin is growing and doing well (over 8 lbs now).  I'm trying to get him to breast feed more.  Monday we are going to try taking him off the oxygen again.

We did get some bad (although not entirely surprising) news about his right eye.  This is the eye that had the retinopathy problem the worst and it now has a wrinkle in the retina.  So vision will be seriously impaired in that eye (although, if you covered up his left eye, he would have enough vision to "get around and not bump into things")  His left eye is doing very well and should have good vision.  There was a surgery option to unfold the retina, but the chances for significant
improvement of vision was low, and the risks of making the situation worse was too significant to make it worth while.

We have gotten a visit from the infant development specialists and they said he is developing really well.  He is on target for his corrected age (the age from his due date).  Which from talking to Mike about Zoe, we sort of already knew, but it's nice to hear it from a professional.  When he comes off oxygen, he will get a hearing test (the noise from the oxygen is enough to interfere with this apparently).  He seems to hear loud, high pitched noises, but we aren't sure his hearing is 100%,

So right now, he visits his peadiatrician every 2 weeks, the opthomalogist every 3 weeks.  The health nurse comes by to weigh him every few weeks, and Infant Development come by every month.  Still waiting on an appointment with a plastic surgeon to see about his nose.   Anyhow, we're pretty busy and with one thing and another, we get out pretty frequently.

Last weekend we went on our first official non-medical outing out to Langley to see great Nana and Papa.  Fun was had by all.

October 30: (Two steps forward, one back...)

So Merlin is back on the oxygen.  One of the tests he had to pass while off the oxygen was to continue to gain weight (about an ounce, or 30 g per day).  He didn't quite do that, and he actually became quite lethargic by the end of the second day on room air.  So we took him back to the hospital and the pulse oximeter to find out what level of oxygen he needed.  He's still on what he was before, the lowest setting
on the regulator.  He perked up again as soon as he got that little bit of extra oxygen.  He's eating lots, he must be gaining weight.  We'll find out how he's doing at next week's Dr's appointment.  Other than that, things are going okay.  We're settling into the groove and enjoying this beautiful fall weather.


October 22: (Breathe that Fresh Air)

Yesterday, Merlin went on his second outing to see his paediatrician.  Grandma Leslie helps me with all his gear - the usual baby stuff plus the oxygen tank.  He weighed in at 3120 g (6 lbs. 14 oz.).  Then we went across the street back to the familiar Special Care Nursery to see our fans... I mean to get hooked up to a pulse oximeter.  This meter reads the oxygen content in Merlin's blood.  A handy thing, if you are thinking of turning off the extra oxygen flow.  After 2 hours on room air only, with good meter numbers, the good Dr. said we could go home without the tank hooked up.  We stayed for another hour just to be sure.  So now Merlin is like a regular newborn, truly breathing on his own.  After 36 hours or so, we can honestly say it has had absolutely no ill effects, he is just as wiggly and energetic as ever.

October 15:

Grandpa Kit writing here...  Merlin is home! (Typing these words has brought tears).  On Friday Merlin moved from Royal Columbian into his first true home with Rob and Gilly.  He is the first premature baby that RC has ever sent home on oxygen therapy.  Gilly said that that last few days have been quite crazy with technicians checking out and setting up the gear.  Lots of visits with hospital teams and advisors too.  After a very active first night, Merlin is now settled in pretty well.  The current stats are: weight 3045 g (just over 6 lb 11 oz) and an incredible 49.3 cm long (tall?).  Gilly and Rob are still working out the logistics of it all.  Gilly said that she was feeling quite well-prepared ahead of the big move but has since realised that there were lots of things left to do.  Grandma Leslie is with them and helping out.  Will add some pictures when we visit Gilly, Rob and Merlin later today.

October 2:

So Merlin has made another move.  He has left the Special Care Nursery behind him.  Because he is just on a little oxygen and is otherwise a healthy, happy baby, he no longer needed "special care", so he has been moved upstairs to the Paediatric ward of RCH.  But because he is still a little guy and somewhat vulnerable, he isn't in a shared room.  He has his own room... with a cot for mommy.  On Friday night, Merlin and I spent our first night together - with his whining monitor.  It was a strange new place for both of us, but we are now quite settled in.  This also means fewer rules about visitors.  He can host a little party in there if he wants and be held by anyone who is healthy and has cleaned their hands.  (as long as he asks Mom first)

But wait, that's not all... today his doctor came in and turned off the oxygen.  They do this little test every now and again to see how it goes.  Today it went pretty well.  His oxygen saturation dropped (mid 80's), but it didn't plummet.  So it only got turned back up to about 12 cc's. (about half what it was previously).  I left Grandma Leslie watching the situation.  It remains to be seen if this will tire him out too much, but even if it needs to be turned back up again, this was a big jump for him.  He weighed in yesterday at 2770 g (6 lbs. 2 oz.)  - almost what Mommy was when she was born.

September 21:

Merlin had a few visitors today (Great Aunt Deb, Aunt Jess, Uncle Jonas)  Jess also took a few pics, so there are likely more to follow.
He's 2470 g today.  Taking all his feeds by bottle.  His oxygen was turned very low during the day, and up a bit this evening.  He is doing very well.  Once he is off oxygen, they will make sure he isn't getting too tired for a couple of days, make sure he is still gaining weight and taking bottles, etc... and then it will be time.

September 11:

It was decided that Merlin's nose was well-healed and he could have little oxygen prongs inserted.  This was done yesterday so he could come out of the incubator and go into a cot.  He has to regulate his own temperature now, so he is well swaddled and bundled, which he likes.  He weighed in at 2205 g (4 lbs 14 oz) last night.  His oxygen need is still really low, but they can't quite turn it off yet.  The exciting thing is that now he is in a cot, grandparents can hold him, which Grandma Leslie did today for the first time.  His due date is fast approaching (Sept. 20.)  I don't know if he'll quite make it home for that date, but it shouldn't be too long now.  I've been busy getting things ready for his homecoming, and I think I'm ready. (ha ha!)

September 3rd:

Merlin weighed in at 1930 g (4 pounds 4 ounces) tonight.  His oxygen is at 25%.  Those of you hitting the website regularly have probably already seen the video of Merlin suckling (I don't think it is windows compatible at this point.)  He is still getting his milk through a tube or bottle, but he has had a few practice sessions at the breast.  When he doesn't need any extra oxygen, we'll try breast feeding for real.  Yesterday, the nurse held up an outfit to him, to see if it would fit and it was too small.  It's nice to know that some manufacturer somewhere makes premie clothes that are too small for our boy!


August 27th:

It's been a while since I've updated last, because we're spending more time with him.  As Merlin gets bigger and stronger there is more that we can do with him.  We change diapers, take temperatures, give him bottles and help with baths.  Also, the cuddles are getting longer and more frequent.  The nurses and I are getting very close... He weighed
in at 1810 g (4 pounds!) last night.  His oxygen requirement is at 32%.  They've found that it is best to wean the oxygen very slowly for him, so it's going to take some time.  All we are waiting for at this point, is for the oxygen to come down to 21% (room air) and for him to take all his feeds by bottle.  Grandma Leslie took some really cute pics of Rob giving him a bottle (he ate the whole thing), so look for them.


August 15th:


Merlin is 1520 grams (3 lbs 6 oz) today.  Over the last couple of days, he has started taking some of his milk in a bottle.  He gets very
excited about this event, his little mouth starts going as soon as the nipple gets close to his face.  His lungs still need to heal up from
all that time on the ventilator, and he needs to gain more weight, so he only gets one or two bottles a day so as not to tire him out.  He's
also wearing pj's now.  He looks pretty darn cute in them with his bottle, I'll get some photos out of this soon.  His need for oxygen is
starting to lessen, so snuggles will soon be mask-free.  We've heard a few faint cries, but nothing very loud yet (well, his basic needs are
always met, so nothing to scream about, I guess).  I'm starting to get ready for his homecoming, which (knock on wood, fingers crossed and all
that) should be about a month away.


August 10th:

He weighed in at 1440 today. They'd like him to be gaining a bit more, so they've upped his feeds to 19 ml. He had an eye exam and a head ultrasound this week. Both came back good. He will have a few more eye exams to make sure they are developing properly, but it seems the danger of brain bleeds is over, so no more head scans. Last night they were able to reduce his oxygen a bit and they have taken him off the caffeine. So he is doing very well. Grandpa Kit took some photos of us having a snuggle with his oxygen mask on. And some of him without any gear at all. So you can really see his face. They're on the website now.

August 4th:

So at 1400 grams, Merlin has more than doubled his birth weight.  He is a little "puffy" today, so some of that weight is water retention, but there is no doubt that the boy is growing.  He now gets 17 ml of breast milk every 2 hours.  But the big news is that the CPAP is off.  As of about 11:30 this morning, he is breathing on his own with oxygen pumped into his incubator.  Hopefully he can continue on this way and they can wean him off the oxygen.  He looks very pleased and content to have all the breathing gear off his face.  His new trick is pulling at his feeding tube (he likes to keep the nurses on their toes.)  So, once the breathing situation is well in hand, I guess getting him onto the bottle/breast will be next.

Thanks for listening.  The huge cheering squad keeps us all going.  (PS: some new pictures in the photo albums)

July 30th:

This morning at 11:30, Merlin was extubated and put on the much anticipated CPAP mask.  He's been on it now for 4 hours and his nurse says she's "very pleased with him".  He looks much more comfortable and was very alert when we saw him.  He smiles when Rob sings "Kung Fu Fighting" to him.  He also gained weight and at 1330g he has very nearly doubled his birth weight.  We are both very proud of him.

July 24th:

Well, as ever, an eventful week.  Finding the equipment Merlin needed was proving quite difficult.  Although his great uncle Rob and aunt Lyn really scored finding the gear in TO, getting training for his caregivers on it was also going to be difficult logistically.  However, it turns out there are a couple of other hospitals in the lowermainland that could offer Merlin the level of care he needs.  Royal Columbian (New Westminster) has a CPAP mask and flow driver unit and staff that are already familiar with using it.  So the upshot of all this is that Rob and Merlin went on an ambulance ride on Saturday from Children's to Royal Columbian Hospital.

He's all settled in his new place.  It's a smaller nursery, so it's a little quieter too, which suits Merlin well [although he's going to miss his favourite nurse ;) ].  So now it's back to weaning down the ventilator settings until he is doing most of the work and then trying him on the CPAP.  His weight yesterday was 1226 grams (just over 2.5 pounds?).  We had a snuggle this morning and he grabbed my thumb hard.


July 13th:

He's doing well.  They've reduced all his settings on the ventilator to the point where he is doing most of the work.  They are looking for a special CPAP (continuous positive airway pressuree) mask to put him on. (This is a mask form of the prongs that hurt his nose) He'll be taken off the ventilator when they find one, or when he just gets big enough to go without the CPAP, whatever happens first.  He is consuming milk only, so no more IV.  The only tubes he has now are his breathing tube and his feeding tube, so he's a little more comfortable than he was.  The cuddles continue and I'm really starting to see his personality develop.  Yesterday he met his great uncle David and great aunt Barb.


July 8:

Update on us:
The move went well, big thanks to my Mom, Rob's Mom, Shawna, Aunt Deb
and the team at A1 Moving (good guys, all) and others who helped pack
and feed us.  We are largely unpacked and settled in record time.

On to the little guy:
He's 1155 grams today.  We had a shorter cuddle, as it was noisy in the
nursery and he was feeling a little too feisty.  He's been awake and
downright communicative the last couple of days, but still getting lots
of good sleep too.  He can't cry with a breathing tube, but he has lots
of facial expressions.  We'll have to try to get some on camera for you
all.  They've started to wean him off the Midazolam (muscle relaxant)
and I think it's starting to show.  His blood work all looks good after
a top-up yesterday (they take so much for tests that the wee ones get
plasma and red cells about once/week).  I'm getting a bit better at
changing his diaper (not easy inside an incubator with all his
monitoring wires), but he still wrinkled up his brow at me, so clearly
I need practice - no worries there.  His feeds are up to 7 ml every 2
hours and he's almost out of the 1 week colostrum, so we should see him
grow very quickly soon as he moves on to real milk.

Thanks for all the e-mails and now messages in the web guest book.  It
means a lot to have such a cheering squad.


July 07 update:

Weight: 1100 grams
Feeds are up to 5 ml every 2 hours. (I need to pump more milk!)  And his bowels
are still in good shape.  He's off morphine and he was quite alert today.  I didn't
hold him because he had some other things going on (a top-up of blood cells -
which they need to do about weekly because they take so much for testing).


            July 03 update:

Yep, our boy is officially 1000 grams on the nose yesterday.

It was a big day (mostly for me) because Merlin and I got a snuggle. Up to now,
he's been in the incubator the whole time and Rob and I just get to put our
hands in to hold him. But yesterday, the nurses put him and all his gear
on my chest for some "skin-to-skin". It's supposed to be important for them
to hear my heartbeat and feel me close. Whaterver it did for him, I sure know
it made me very happy. Rob took pics which will be loaded on the website
as soon as we get them to Grandpa Kit, that address is:
http://www.kitandjane.ca/earlyMerlin_web/albums/1-Merlin - 4 days/index.html His blood cultures turned up negative,
so they also took him off all the antibiotics. I'm heading in now, maybe for another
snuggle, if his oxygen needs stay in the low 40's or better.

  June 29 update: (apologies for the gap... they've been busy)
        (Rob and Gilly moved on Wednesday)


He has had a trying week.  The CPAP apparatus that he was on hurt his
nose, so they had to remove it and re-intubate him.  Then he got an
infection (they still don't know what exactly, as the cultures kept
coming back negative), but the general antibiotics they gave him seem
to have cleared that up.
He is now stabilized and using about 30-40% oxygen, he still has moist
lungs, which they are going to give him diuretics to try to correct. 
The main thing is he needs to mature his lungs and grow generally. 
They stopped his feeds for a while when he was sick, but his is back on
the program now, eating breast milk at the rate he left off at.  Today he weighed
970 g but some of that is probably water weight.

June 17 update:

I was just looking at that photo from Saturday, and he already looks
pretty different.  Merlin continues to breathe without a respirator, but
with a CPAP (it keeps a little air pressure in his lungs so they don't
deflate completely.)  He has been on the CPAP since he went off the
respirator, so this isn't news, but I forgot to mention it earlier.  He
needs a little more oxygen (up to 48% some times) than he did
previously, but there hasn't been any talk of putting him back on the
respirator, so I guess we just hope that goes down again over the next
little while.


He continues to be fed milk and he spits some up, but the docs said
this morning to keep the amount the same (1 cc every 2 hours).  His
weight has gone down (to 640 grams this am from 675 originally), but
that is to be expected for all newborns for another couple days, then
it should start to go up.  It is nerve-wracking to watch though, when
he is so small to begin with.


He still wakes up and gets angry when he's disturbed.  He opens his
eyes and looks at me and nestles into my hand.  It's really hard not to
be able to hold him, but he does seem to know that we are there by his
side.  He spends most of his time quietly sleeping, and that's what he
needs to do.

June 14 update:


He's been breathing on his own since yesterday noon.  They have given
him a bit more oxygen (30%) because he is working hard.  They have
doubled his food intake to 12 cc's / day.  He was alert and angry when he had his
wipe down this morning and cried a bit.  His bowels are working order
(if you know what I mean). His brain scan was good.


June 13 update:


He has been eating 6cc's/day of my milk (through a feeding tube) for
1.5 days now and seems to be digesting well.  He is on a respirator (or
ventilator - what's the difference?) that allows him to take his own
breaths and just tops him up if needed.  He is just on regular air, not
oxygen.  Today they are going to try him off that.  I'll let you know
how that goes.  It could be the kind of situation where he is on his
own for a bit, gets tired, and then goes on it again for a while. 
Against my cousin's advice, I will also share that while his diaper was
open this morning, Mom and I saw him take a little pee...