Long overdue update

Well it's been over 5 years since my last post here, so time for an update.  This not an easy website to come back and read for me.  The 4 months I spent writing things down here as a way to just get the word out to all our family and friends who wanted to know what was going on were the hardest months of my life.  Looking back I don't even know how I handled the day to day visits to the NICU.  The doctors were fantastic, but the sheer reality of what we were facing is still hard to digest.

I think the act of actually writing things down here helped me out immensely.  It forced me to sort the days's facts out and explain what I was hearing to others.  That process helped me keep focused on the facts and the hope, and not get bogged down in the overwhelming negative despair that surrounded the entire ordeal.   It started as the most efficient way to get the word out, but I had no idea what a following we would get here, and how much the comments and support helped us out.  Everyone who read this blog and commented, called or visited was part of our strength that we passed on to Dillon and Madeline, so in fact.. all of you are responsible for their health today.

If anyone had told us in October of 2007 that Dillon and Madeline would be living in Costa Rica, surfing, ziplining, swimming like fish and learning Spanish, it would have sounded like a dimwitted attempt to give us some hope.  I could not have predicted a better outcome to such a hellish beginning to their lives.

Just yesterday, Dillon was stung by a stingray while boogie boarding at the beach (2 hours of bawling) , then later that day he shook it off, went biking and  landed a jump badly, scraping up his hip and his elbow with roadrash.  By bedtime that day he was on his skateboard trying to perfect a kick 180 he is learning.  It made me think about this blog and how his life started.  I don't think we would be as calm at dealing with these bumps and bruises, or as willing to let him get back out there again and attempt to kill himself in the pursuit of fun, if we had not been through the worst with him already in 2007.  There's not much more medically you can throw at a parent after you tell them their kids will not survive, and if they do, they will be disabled in some significant capacity.

As for Madeleine, she is diving to the bottom of the pool headfirst, better at Spanish than I am, and will eat just about any weird food you put in front of her (Yes, Brussels sprouts and beets are weird).  As for her personality, if I was not married to Abby I would call her the most outspoken person in my life.

So things turned out in the end.  Reading this blog again, I felt it needed an epilogue of sorts, and I can't think of a better one than a video we made a few weeks ago of Dillon and Madeleine in surf lessons here in Costa Rica.  The fact that they are here today, living this life, still sort of boggles my mind.  So here they are.. my perfect, perfectly healthy twins.

Love.. Dad.

Great end to the year

Madeleine came home on Sunday, December 30th, as our New Years gift. Due to a complete lack of time, sleep, and everything else it seems, it has taken me a week to get on this blog to write the update. It has been everything we ever dreamed of, and way harder than we imagined. But.. worth every bit. They are both amazing, and we still can't believe we actually have them both here.

Here's a few pics of her and her brother....




Sam was here for New Years and LOVES his new siblings. He could not stop stroking and kissing them. He loves to stand at the crib and stare at them.



Don't know how often I will be updating this blog moving forward, what with the no sleeping thing :-). We would both like to thank everyone who read and posted here for us during this extremely difficult time for us. We could not have done this without all of your support. You have all been amazing.

Love from all of us
Abby, David, Dillon, Madeleine & Sam.

A Christmas Present

We got 1/2 our perfect Christmas, as Dillon finally came come on Sunday, Dec 23rd. His due date was Dec 22nd, so after 4 months in the hospital, and what seems like a million scary moments, he ended up at home just one day late.

Here he is in his bed at home. There were many points along this journey when we thought we would never see this.

Here he is just arriving at home. with his cousin Joshua.

Dressed up for ChristmasBack in the hospital visiting Madeleine

Madeleine, wide awake as usual..
Now we are just waiting for Madeleine. She has been feeding better for the last few days, and with a little luck, we will have her home before the new year. Sam arrives tomorrow, so we might have all 3 of them! What an amazing way to start 2008!

As we wind down this amazing journey, we both wanted to thank all of you for your generous outpouring of support. Your comments on this blog got us through some pretty dark times, and I still well up every time I re-read it from the beginning.

Stay tuned for the update on Madeleine..

Dillon almost home...

Hiya all,

Babies are still in Lion's Gate, and doing well. Dillon is all off probes and tubes. We can actually walk around with him like a real baby! Madeleine is still on a feeding tube and O2 sensors, but is off her heartrate monitors.

Dillon is actually ready to come home already. They are talking about us taking him home this weekend. Madeleine is likely going to be a few more weeks. She is still learning to breastfeed, but its a slow go. She is very distracted, wide eyed and awake, looking around the room.

Examples below. Pics of Madeleine not breastfeeding.






And.. here is Dillon in one of his rare moments awake without a breast in his mouth, having a big yawn.

The twins are both sleeping in the same crib now, and are very comfortable together, except when Madeleine hits Dillon in the head.

Update ... Finally!

Bad blog poster.. bad.. I have been remiss in my posting duties.. apologies to all.

OK.. now that we are back home, I'm starting to think that Edmonton might not have been all that bad. We have been slammed back into the reality of both our jobs, Sam visiting, Christmas shopping & parties, and a 3 month backlog of house projects. And we don't even have the twins at home yet! Can't really complain though.. we are having a blast, and it's so great to be back.

Sam was out last week and it was his first time seeing the babies (besides on the ultrasounds). He was quite a proud older brother, and loved holding them and touching them in their crib in the hospital. (He had predicated that we would have a boy and a girl)

They are both on room air now, no supplemental oxygen at all. Dillon is now bottle and breast feeding, so they removed his feeding tube yesterday. For the first time ever he has no tubes sticking into him! He still is wearing the sensors for vital stats, so there are still a few wires to deal with, but he is living without any medical assistance! Madeleine still has her feeding tube in. They have run it through her nose, so that it does not get in the way of her trying to bottle or breast feed.

Dillon is doing very well on the breast and the bottle. He can now pull a full feed from either. He is taking in about 70ml per feed, and feeding every 3 hours, or 8 times a day. That works out to about 1/2 a liter of milk per day he is consuming. Madeleine is still a week or 2 behind Dillon on the feeding, and is still primarily being fed via her tube. She is learning the bottle, and we are hoping to see some progress this week.

Dillon now weighs in at 6lbs, and Madeline is 4lb 15oz. A long way from Sept 9th!

Will try to get some updated pics of the giant babies this week. Here are a few shots of Sam holding his siblings.

Back in Lotusland

We made it! After 3 months, almost to the day, we are backing living in our own house. Babies are now resting comfortably at the Special Nursery in Lion's Gate Hospital, 10 minutes up the road from our house. They still have a road to recovery ahead, but at least we are back amongst friends and family.

It was a frustrating week, as we were to come home on Tuesday, to Richmond General, but the hospital had a flood and at the last minute they canceled our flight. We had checked out of the hotel, and sent all our luggage and clothing ahead to Vancouver via courier. We ended up overnighting at our friend Linda's place, then waiting around yesterday to see what was going to happen. Finally the transport team showed up at 2:30pm, and confirmed we were going, and we had 2 beds at Lion's Gate in North Vancouver! Abby and I were grinning like idiots for the rest of the day.

Here's a few pics and vids of the trip home..

Twins snuggled into their transport isolette. Its a self contained incubator to keep them warm, on oxygen, and monitors their vitals. Dillon is in the front, Madeleine is cooched up behind him.


Edmonton NICU team saying goodbye. We will definitely miss everyone who took such good care of us there.

Here's the jet that we took home, operated by the BC Ambulance team. We had 2 pilots and 2 infant care transport medics that accompanied us in the plane.
Babie's getting loaded onto the plane in Edmonton.. -25C (brrrr)

Cramped quarters with all of us in there. Nice to see Abby upright and awake for the return flight!

Landing in Vancouver. You can see the plane shift back and forth in the crosswinds as we are lining up for the runway. At the end of the video, you can hear one of the medics say "There is something going on over there" He was looking at a large number of emergency vehicles that were at the end of the runway. They were responding to an emergency landing scare that was happening at the same time we were landing. Details are here.

That was our journey home! Here are a few more pics of the babies from earlier this week.

Dillon lounging about in some new duds..
Dad'n'Dillon
Madeleine expressing her true personality (looks like she has some nice sideburns as well)


Dillon trying a bottle for the first time (he took almost the whole bottle!)


Twins crashing on Mom's lap after a good lunch

Getting closer to coming home!

Apologies to all who are suffering from B.W.S. (Blog Withdrawal Symptoms). But some great news after a week of radio silence...

Madeleine has made it 24 hours on low-flow, without her Si-Pap machine! That means that both twins are now technically in level 2 ICU and could be transferred to a lower mainland hospital other than BC Children's. Starting Monday we will be working with BC and Edmonton hospital admin to try and get us moved asap. More on this as it unfolds.

Madeleine had an operation on both her eyes this week, to solve a problem that is fairly common in preemies. The blood vessels in the retina are not developed enough to handle the volume of blood that they are now getting, now that they are breathing oxygen air. As a result, if the operation is not performed, there is a strong possibility of the retina detaching, and permanent blindness. The good news is that this is fairly routine, and the operation only took about 45 minutes. They use a laser to "zap" the retina, and she was scheduled for 2000 zaps per eye, but they only had to do 600 per eye. She had eye drops for a few days, and still looks like she has a black eye, but has recovered fully. Dillon will likely have to have this same operation in the next week or so.

Madeleine is now in a crib, so both babies are out of the incubators and on room air temperature. She has a larger traditional looking crib, albeit made entirely out of metal (looks kind of like a baby Alcatraz). Now that she is off Si-Pap, they will probably move her to a little bassinet like Dillon is in.

Speaking of our perfect son.. he is now bottle feeding. Abby is jumping for joy, knowing that she can now get me to do the midnight feedings. He just started this today, after a few false starts. The nurses were very happy with how well he took to it, and how strong he can suck. For the next while, we will be working on both breast feeding and bottle feeding him, so he grows comfortable with both. We will start trying Madeleine on breast feeding this week, now that she is feeling better. Both twins still have the feeding tubes in (through their noses now), as this is still the primary means that they get their food.

They both had their first true baths in a bathtub as well. They both initially squawked at it, but once in the water and warm they each liked it, and did not fuss. Coming out in the cold.. that's another story. Lots of drama there. Each day we get to act more and more like regular parents, even if it is only for a few hours per day. We leave the hospital grinning like idiots most of the time these days. A long way away from where we felt 3 months ago. Yes.. as of this coming Friday, we have been here 3 months!

We've had quite a few visitors over the last week. My sister Heather was in town last weekend and spent some quality cuddle time with her niece and nephew. Abby's aunt Kim and her daughter Emily were in town this last week, and we had to beat them off the babies with a stick, as they spent more time with the twins than we did!

That's about all for now. We are having Internet issues here in the Hotel (its free, and you get what you pay for), so I am unable to post pics or vids right now. Trying to figure out a way to get them up for all to see.

Thanks everyone for the birthday wishes. Not how I planned to spend my 40th, but we will have a hell of a combo Abby Birthday/David Birthday/Thanksgiving/Halloween/Remembrance Day/Grey Cup/Babies coming home party!

Minor setback.. but not too bad.

Things seem to be heating up here in the push to get babies home. The NICU here was approaching full last Wednesday, so in an effort to get the twins into level 2 (where they could be transferred to a BC hospital) they put them both on an aggressive push to stay on low-flow oxygen, and get off the Si-Pap machine. Dillon has made it through today (5 days), but Madeleine crashed overnight, and took a step backwards onto getting rate assisted Si-Pap, something she has not been on for weeks. They feel that they just pushed her too far, and she got exhausted. She had also just had a shot on Wednesday, so she was already feeling under the weather prior to the push.

She has now rested for a few days and they are trying her on 6 hour stints of low-flow at a time, and she seems to be doing well each time. Dillon has progressed well and is now on day 5 of straight low-flow. He has also been moved out of his incubator and is in regular baby bed (sort of like a plastic shoebox). Its much noiser being outside his sealed incubator, with all the nurses talking and other babies in the pod ringing high or low on their stats, but he seems to be able to sleep through it all. Good training for living in our noisy house!

He is now technically in level 2, but because Madeleine is in level 3, he inherits that status as they are always kept together. If she can get on low-flow over the next week or so, we are in a position to transfer back to a BC hospital.

I got to hold both of them together a few times over the weekend. It was amazing. They both do really well when then they settle in next to each other, and are comfortable feeling each other's faces and hands. Here's a few pics of them hanging out with Dad.



Dillon in his big boy bed..

Boobs

Both babies tried breastfeeding this week for the first time. Dillon (being the guy) had no problems and LOVES it. Madeleine is not so sure. She latches on, but seems rather disinterested in the whole affair. She only seems to go for a few seconds at a time. Dillon on the other hand would quite happily spend 24 hours/day on there. Another step forward though.. and closer to getting out of here.

Dillon is now up to 4lbs 14oz (He'll probably hit 5 lbs today), and Madeleine is 3lbs 10oz. We have had some ongoing problems with the reliability of the scale in Madeleines incubator, so now we are are weighing them both on an external scale. Here they are hanging out on the scale.

Dillon...



..and Madeleine

Update for last week, and the Rodeo!

Sorry all for the delay in posting. Very busy week back in Vancouver, and back here in Edmonton too. First off.. everyone is progressing well. Dillon is a chunky 4lb 9oz, and Madeleine is 3lb 8oz (give or take). They have been having some technical issues with the scale in her incubator, so they weighed her on an external scale. She is still gaining weight at the same pace of her brother, but is still about 1lb behind due to her lower birth weight and some early issues she had which disrupted her feeding. It will be interesting to see if she catches up over time, or is always a little smaller than Dillon.

They have moved pods now, into "E" Pod. We have been in "B" and "C" pod over the last 2 months. The pods are arranged by severity of care in the ICU, with A, B & C pods being the higher risk, and "J" pod being the last one we are in before we would be discharged. So.. things are moving along. They are still in level 3 ICU, but pod E has both level 2 and level 3 babies in it.

They are still both being trialled part time on low flow oxygen (the small tube under their nose). They are both doing really well. Last week they were only doing an hour or so, and now Madeleine has done a 13 hour stint, and Dillon has done around 9 hours continuous. They are both now almost on a room air oxygen mix of 23 or 24%. We will probably start breast feeding today, as they are an low flow when we hold them.

Here are a few videos that clearly point out the difference in personality already developing in the twins. They were both taken out to be weighed the other day. Dillon (the first video) is fairly quiet about the issue, he squawks once or twice. Madeleine.. well... not so quiet. Sigh..

Dillon....


Madeleine...



For those of you wondering what a pod looks like, I took this little video showing what the room looks like. I took it 2 weeks ago, so it shows the twins still in Pod B, but Pod E looks essentially the same.




Had a very busy week in Vancouver last week, but managed to get the babies room kitted out during the 4 evenings. Its a color called olive oil, kind of a yellow green combo. White cribs, change table and a taupe couch round it out. Felt good to make them a nice home to come back to.

As they say, when in Edmonton, do as the Edmontonians do.. We went to see the Canadian Rodeo Finals at the Rexall place (local version of GM place) on Saturday night. Yee-haw Quite a sight to see. We were the only ones out of 18,000 people not wearing cowboy hats and some form of Wrangler denim/corduroy combo outfit. You know you are at the rodeo when they have events like the wife carrying contest, where drunken men throw their wives over their shoulder and attempt to race to the other end of the area, predictably stumbling and dropping their wife on her head. Good times. The other interesting Darwinist event is called bull poker. 6 guys sit at a poker table and they let a bull loose to charge them. The last guy who manages to stay in his seat gets $500. Yup.. $500 for risking your life with a charging bull.




Well that's it for last week's catch up.

The twins re-union

Words can't describe our day on Sunday, so I will let you all just watch the videos below. Suffice to day it was probably the best day we have had yet in Edmonton. Both babies were breathing completely unassisted for about 15 minutes, and then spent another hour without masks, using only a lo-flow tube under their noses. Previous record on lo-flow was only about 2 minutes, and that was only a few days ago. As the title suggests.. this was the 2nd time the twins got to touch each other. Dillon is on the left, and Madeleine to the right, sound asleep.











As you can see, Madeleine slept through the entire event. She had been awake about 30 minutes earlier, but crashed by the time she got on Abby. Here she is earlier while we were changing her outfit.


So there we are.. a great day had by all. We were in 7th heaven for the rest of the day. It was incredible. We had about 10 nurses all crowded around watching the fun as they cuddled with mom.

I'm back in Vancouver this week, so there probably won't be any new pics until the weekend.

Oh yeah.. I almost forgot

It's 11pm and it's $#@!!'ing snowing here!!!!

Saturday Nov 3rd.

November already! Yikes.. We arrived here in August!. It was another uneventful day.. which was just fine thanks very much. We are starting to get more involved in the day to day care of the twins, now that we are all more comfortable with the medical aspects of their life. We bathe them, change their diapers, and can take them out of the their incubators and put them back by ourselves now. Dealing with the tangle of hoses, vents and wires has become second nature. It feels a lot more like being parents now that we can interact more. When they cry, we can solve the problem, be it a full diaper or needing a cuddle. We can even get them to go to sleep now. It's still a long way from having them home, but every day feels better.

Dillon is now 4lb 4oz and Madeleine is 3lb 2.4 oz. Here's a pic of Madeleine hanging out on her very proud mom..


Little Dillon trying out the low-flow oxygen. Check out those jowls!



Here we have the world's youngest grumpy old man.

Can't you just hear him yelling "Get off my lawn you little urchins!!!!" in 70 years?

Boo

Not an overly active evening for their first Halloween, so we decorated their incubators with some scary spiders. If they are deathly afraid of spiders as adults, someone remind us that we did this to them.

We tried Dillon on lo-flow oxygen yesterday. This is the next step to get them towards level 2 care. He did not like it one bit, and we had to put him back on the Si-Pap. We will try again next week. It was an aggressive move to try him this quickly, so no-one was really surprised that he did not take to it.



Madeleine heading off to sleep with Dad. A big yawn!

Baths, cries, and the road home..

OK.. lots of news and pics today. Both of the little rugrats hit weight milestones today with Dillon weighing in at 4 lbs and Madeleine at 3lbs. They look HUGE these days, but I have to keep reminding myself they are still 1/2 of Sam's birth weight, and I thought HE was tiny.

Dillon had a bath today in a little metal bowl. It was hilarious. It was his first real bath, and he was not sure what was going on, but he seemed to like it. He smells MUCH better now. He also got another blood transfusion as his hemoglobin count was low again.

Madeleine also cried audibly today and I managed to record it. She is not very noisy yet, and I put the recorder practically in her mouth, but here she is all her glory. (It's a still picture, not an actual movie)

We also made some progress on the journey home. In our search for someone who would pay our living costs while out here, Abby managed to navigate her way to the BC Provincial Director of Perinatal Care, who is basically the person who moves babies in and out of BC. She talked to us for a while, and is now working several hospitals in the lower mainland to try and find some room, once we get out of level 3 ICU and into level 2 ICU. We might even be able to get into Lion's Gate in North Vancouver, as they have a level 2 ICU. Fingers crossed!!. Oh, and she is also the person who approves our out of province expenses, and she committed to cover our hotel bill at a minimum (the largest expense), and asked us to submit all other expenses for consideration. So.. that is a big relief.

Here's Madeleine relaxing on Mom....


Awake and alert with Dad.. in a new outfit.

And here she is REALLY relaxing on Dad.....

Dillon's first bath.


Little man in all his glory...


Finally.. Mom holding Dillon..

Dillon.. meet your sister....

Madeline... meet your brother.

I have to show you this picture before I write another word.


That's right.. Abby got to hold both babies for the first time, and this was also the first time Dillon and Madeleine touched each other since Sept 9th when they were still in Mom. A very emotional moment for us as we got our new family together for the first time. It was incredible. No other words to describe it. More pics to follow.

They tried Madeline on "low-flow" oxygen for the first time yesterday ( just a small tube under her nose, no mask). She struggled with it, and had a number of Brads and Desats while Abby was holding her, so they put her back on the SiPap. Probably need to wait a little longer for that.

They have both had a routine ultrasound of the head, and both results came back OK. This is where we would have seen fluid in the skull or other defects that might impact brain development, so all looks good there. They also did an eye exam on both of them, where they actually inserted a tool BEHIND THEIR EYEBALLS!! My eyes get irritated just thinking about it. They are checking the retinal development, and all looks OK there as well.

Abby started what will be a long and arduous journey to get someone to cover our hotel expenses while we have to stay here in Edmonton. BC MSP stated we needed to talk to the Coast Health Authority (group that runs the Vancouver hospitals). Coastal Health told her to talk to MSP. When they were told that MSP sent us to them, they told us to talk to BC Womens. Let the politics and games begin! More on this as we navigate the murky waters of our provincial health system.

I'm back in Edmonton for the week, so there will more frequent updates to the blog this week. Promise!

Madeleine on Mom trying out her low-flow oxygen tube.


Dillon likes his hand held, and Madeline likes holding a hand. This might work out well!. Here she is hanging on to his thumb.


I know, I know, babies can't smile at this age, but seriously.. look at her.

A very proud and happy Mom.

First family photo. Just need to get Sam in there next.