Dec 26

Christmas is over... it was a big lead up toward the big day because we were on eggshells about germs.  All we wanted for Christmas was healthy kids.  Scott got hit with a wicked cold about a week ago, so this is how he spent the last week:

We hope the effort to avoid the germs pays off, but today Sadie came down with a mild fever.  We immediately shipped her off to my parents.  You might wonder about all the crazy germ control, but a friend of ours that we met in the NICU is going through a very hard time with her little guy.  He had a 'cold', and they took him in to get checked out... more than a week later, and he's currently at Sick Kids, back on c-pap and in the PICU.  He was a bit ahead of Ryan in terms of oxygen requirement and feeding... this is a huge setback for him.  His mom is an amazing woman who has this incredible ability to see the good in any situation (unlike myself!).  Their situation  has been weighing heavy on my mind all week.  I feel bad for them, and it is a big lesson in perspective.  We are very lucky to be where we are. It also is a reality check of how these wee guys just can't fight even the common cold.  Ryan has made great strides since he's been feeling better and we are working hard to keep him from having another big setback. Part of me knows it's inevitable, but in order to keep our consciences clear, we have to do EVERYTHING possible to protect him.  It is very hard as a mom to have to choose between your kids.  Sadie's sick, and I know that what's best for her is to be home, cuddling in her own bed, but when we look at the risk of her being home, we know that she'll be well taken care of at my mom's, and she can fight a cold like a champ, unlike wee brother.  I'm sure each cold it will get more tolerable (I won't say easier, because it will never get easier). 

Another notable moment came yesterday - Sadie had gone to my parent's for a change of scene.  I was with Ryan in his room and I had a moment of emotion about my friends in the ICU, and also just the day in general.  I cried.  All of a sudden Ry looked at me like, 'mom, come on, get over it, I'm gonna be ok.'  It sounds crazy, I know.  I put him on the bed, and he proceeded to laugh, smile, and coo like a 'regular' baby.  His timing was perfect, and after that he had a great day. We're still all learning a lot about ourselves, and each other. 

We hope everyone had a very merry christmas. 

Merry Christmas!

I wish I could've sent one of these out to everyone who has been supporting us along Ryan's Road Home, but this will have to do.  Please know how thankful we are for all the support and encouragement.

Dec, 13

Today's kind of a big deal. Back in June, when things were not going well for Ryan (the weekend we were advised to 'stay close' because our options were running out), there was a card at his bedside one morning with a follow-up appointment booked for Dec. 13.  I thought, hey - do they know something we don't? Is he gonna make it? Turns out the pre-booked appointment had nothing to do with his prognosis, it is standard practice for the follow-up team to see the babies at 4 months corrected.  The timing of said appointment was - interesting.  Anyhow, as we know Ry pulled through, and today's the day.  I'm a bit nervous because the reason they see the babes @ 4 months is because this is the time when physical and developmental disabilities can start to show... We know that he is in one of the highest risk for these things, but so far so good.  I'm just hoping if we stay on top of his developmental milestones, the impact of these disabilities will be minimized.... and using my wishful thinking powers that he will pull through and defy the odds, as he has done on many occasions before. 
Happy 4 months little big boy. (Sadie's new name for her little bro). 

Dec. 5

Just checked in on the ol' blog (while pumping), and noticed 17 000 pageviews! Guess Grandma, Grampy, and Papa have been busy checking on things ;-)

No time for an update but here's a treat:

Nov. 30

Good riddance to November.  What is usually a month of excitement (Sadie's birthday, and Christmas prep) was a month of stress, emotion, and illness.  Now that it's over, there were lessons learned, but still glad it's over.  I thought we were ending on a high note because Ryan's eye exam went extremely well today.  The doctor couldn't believe the improvement.  I can't remember how much I've updated on his eye condition, but the short version is that his blood vessels have finally grown into the outer zone of both eyes, meaning his vision should be ok other than the potential need for glasses (genetic, sorry buddy).  HOORAY!  I literally breathed better for a brief moment after hearing the news, and the weight on my shoulders literally felt a little lighter. Until.... and I hesitate to post this on such a large forum, but I bet many of you have had this happen to you.  Here goes...
Ryan had a paediatrician appointment in Richmond Hill today and since our nanny lives down there she was meeting me at the office.  On my way there (at a red light) I got a message that Sadie needed to be picked up from her friends house.  I waited until I got to the parking lot before calling my mom to ask her to go pick her up. Suddenly I was out of the car with the doors closed, with my keys, and Ryan locked inside.  OH F.... Thank goodness I was on my phone (although the blunder may not have happened if I wasn't).  Martine ran inside to tell them we were there, and we'd be coming up - eventually.  I called Scott who I'm assuming dropped everything and headed down (a 30 minute drive).  Meanwhile, Ryan was doing great, I could see his oxygen monitor and we were watching him just chilling (no pun intended) in his carseat (which is rare when the car is not moving).  A mom who was in the pedia's office came out and said that this happened to her and she ended up calling 911 because the fire dept was right next door and they were there in 2 mins.  After a short mental debate, I did it.  Scott was about 15 mins out, so I went for it.  Medically fragile baby, on oxygen, freezing cold day... urgent enough.  Sirens rang out within a minute, and there they were.  They were very nice, afterall a mom in this situation does not need to be reminded of anything, we'll scold ourselves more than anyone ever could.  Ry was fine, we thanked the firemen, and off to our appointment we went.  No wonder I have a headache tonight.
Here's another brief update:

• We spent a week at Southlake hospital because Ryan's cold finally got the better of him (and us) he had a terrible cough and his oxygen saturation started to drop on the Sunday night.  They were great at the hospital and let us stay until we started to see a noticeable improvement. 
• He's back on his regular oxygen level and is starting to be able to eat a little better
• Still a long way to go on the eating side of things- we're seeing a specialist, and he'll probably end up with a g-tube ( a tube that goes right into his belly and is permanent until he doesn't need it anymore)
• Reflux is still a battle we can't win
• I've booked us into an osteopath... am going into it being slightly skeptical, but a friend I met in the hospital takes her boy who is a lot like Ryan and has seen some success... why not?
• He has gained weight.  too much weight.  Now they (the dietitians) want to drop his volume of fluid and add in protein powder to help his length
• I struggle with following all of their 'rules' because a lot of it goes against what my instinct is telling me. I have to trust them because the bottom line is that they know what is best for his lungs and if we protect the lungs, we give him the best chance
• I want to have Christmas right now because we are at a good place on this roller coaster.  I fear what the next 3-4 weeks will bring.  Everyone tells me to focus on the positive, but I still struggle with that because the last month was so low.  
• Sadie continues to delight, surprise, and amaze
• Now that Ryan has turned the corner and has 'recovered' from the worst of his cold, he is more alert, he even started 'cooing' (the first 'happy' sign we've seen from him in a LONG time)
• We now have nursing help 3 nights per week (tonight being one of the nights which is why I'm on the computer and its past my bedtime).  She starts at 11, and I'm 'on' to let her in and get her set up for the night.  3 out of  7 is great but if and when the next cold comes, we'll have to ask for some more. I think part of our issue with 'coping' came from pure exhaustion.
• We continue to be grateful for those who have helped us out lately... we're lucky to have some really great folks in our lives

That pretty much scratches the surface of the last little while but it will do for now.  Upcoming events include our neonatal follow-up appointment at Mt. Sinai, more consults with the feeding doc, and a new 'complex care' clinic that is run through sick kids, and in January we'll address Ryan's hearing.  For now, thinking happy thoughts and trying to keep the visions of sugarplums vs. the visions of other not-so-great things.
Farewell November, you won't be missed.

Nov 16 - Home for 9 weeks

Sitting in Ryan's room waiting for him to wake up to eat.  It's been a crazy few weeks with more downs than ups it seems. I've been reminded of the roller coaster that is prematurity many times, and still forget.  I think the biggest challenge (for us - is sleep).  For Ryan, it's many things.  Lack of sleep does funny things to the ol' body and mind... we knew this.  Every parent knows this.  But there are very few ways to deal with it. I don't know where the coping mechanisms come from - by that, I mean how can some moms deal with the lack of sleep and some moms can't.  We have a ton of help and we are very fortunate to have had some amazing people come in to our lives lately.  I know that sleep will come.  Eventually.  Once we figure out how to get him to eat better.  Here's an abbreviated Ryan update:

• We visited 6 hospitals in 7 days this week.  
• Southlake ER to check hernia
• Sick Kids ER later that day to re-check hernia
• Sinai for an eye appointment that had been rescheduled to Wednesday, but no one told us
• Sick Kids for oxygen assessment and chest x ray (an appointment that we'll have every 2 months)
• Sinai for afore mentioned eye exam
• North York General for a visit with the chief of pediatric nutrition to assess Ry's feeding issues and reflux
• Our new nanny is awesome (thanks to the Ontario government Enhanced Respite grant for helping with this one)
• Ryan weighs 6.34 kg and is 61 cm long... I'm new school now, so I don't have the lbs and inches conversions
• We've had a 'cold' in our house for 3 weeks now.  Ryan and I spent 2 nights in Richmond Hill hospital before Hallowe'en because of it, but luckily it never made its way into his lungs... it just WON'T GO AWAY.  Neither will Sadie's - so I imagine that his will hang on even longer than hers will.  
• Anxiety about germs is mounting because I've seen how one tiny cold can be a huge setback.
• Our nursing support has been increased to 16 hours per week, which is great, but is still a lot of time without said nurse.  
• We're still feeding Ry every 3 hours but each feed takes an 45 mins to an hour, then he needs half an hr to settle - then he coughs 10 or 15 times (thereby waking/keeping us up), then it's time to do it again
• This is taking a negative tone - things aren't falling apart, we're ok... I'm just illustrating reality.  It's hard.  Harder than we (I) thought.  I could do a post on what's going on in my mind - but I'm not ready to share it with the internet at this point in time. I'll draft it, and one day when this is behind us I may post it
• We are already experiencing the frustration of wait-lists for services... more on that another day

We continue to be grateful that our family is together.  Sadie was pretend talking to frosty tonight on the phone and told him that Ryan came home.  She also occasionally talks about how mommy's home and I'm not going anywhere.  She amazes me every day. 

Nov 4 - week 8 @ home

Current weight: 5.82 kg
Gestational age: 6 months, 1 week
Corrected age: 12 weeks
Parents exhaustion level: high

• 2 sleeping kids, 1 sleeping husband... I'm up because in mere moments, Ryan will be too.  Feeding is still a roller coaster, and it's one that comes with many deep breaths and digging very deep for patience.  Luckily we've been seeing a feeding specialist (where was she 8 weeks ago!?)  We now have a lot of re-training to do 
• Ryan has some super bad reflux and I'm searching high and low for a cure.  I even caved and bought a pro-biotic to see if that can help things out.  
• He was hospitalized for 2 nights last week.  He'd had a cold, it wasn't getting better, I got worried, the ER doc thought it was aspirate pneumonia, it wasn't, the storm came, our doc didn't want us driving home, Ry got a new feeding tube put in, we stayed an extra night, we came home, I was beyond exhausted, emotional, and stressed... Ry seems to be on the mend - we survived the first cold. I DREAD the next one. I don't think it'll 'get easier'.  EVER.
• Long story about the hearing assessment, and it's not an overly happy one, so I'm going to wait to tell it.  I'd rather play with some pictures while I have time.

... Ryan has other ideas... maybe another day...

Oct 15... week 4 at home.

As I sit here at my computer, I'm watching Ryan and his new RPNurse having a bottle on the couch.  Through CCAC we have qualified for 8 hrs a week of RPN help.  So far so good.  Although it's hard not to just do it all.  Our nurses at Sinai set the bar very high, so this is definitely a transition.  The nurse will come 2 days a week for 4 hours. I've requested 8 am - 12 pm to help with the craziness of the morning.  Eventually, we may even get to the point where I can actually leave Ryan with them (gasp!). Here's the gist of what's been going on...

• Ryan weighs about 11 lbs
• His corrected age as of Oct 13 is 2 months old but at the end of this month, it will be his 6 month birthday.  Mind blowing.
• They say not to wish away the baby days because you'll miss them when your kids get older.  I can say with confidence that I am wishing away these baby days and am looking forward to the bouncing toddler days with no tubes or alarms
• He still has his feeding tube but we only use it about half the time
• We had no appointments last week but made one with his pediatrician because he hadn't pooped in 5 days. Apparently breastfed babies can go 14 days, so we were politely sent home, Ryan pooped the next day.
• We have an accessible parking permit for him because of the oxygen.  This will make doctor's appointments much easier (especially the Toronto ones).  Too bad he's so fragile, otherwise I'd drag him out for some Christmas shopping.... not.
• We are getting  a little sleep, but Ryan is probably the noisiest sleeper in the WORLD he grunts and groans pretty much all night.  Both Scott and I have had super weird dreams when we're in the room with him
• Sadie is an awesome big sister.  She had a slight fever the other day, so infection control was in full-effect... even more than usual.  She's ok now, but I dread the day it turns out to be something 'real'.
• We've had a few visitors... close friends and family who are super healthy
• I'm still overwhelmed by the generosity of our friends and family - now that we have this help, maybe I can get some proper 'thank-yous' out there.
• Ryan likes going out for stroller walks and every time we try, it gets a little easier.  The hardest part is getting our butts in gear to actually do it.  
• We've yet to venture to Grandma and Grampy's for a visit.  Thanksgiving consisted of me and Sadie going over for dinner and I brought a plate home for Scott.  Again, it won't be as bad as we think, it's just  a matter of getting out the door
• Miss Sadie turns 3 in less than a month, but there won't be any candles on her cake (no flames allowed near oxygen).  We're just having  a 'family' party for her in order to reduce chaos, germs, and stress
• Scott is away for 3 days this week... Grandma and I will be very busy.
• Baxter has been staying with a wonderful family in Etobicoke, and is very happy.  I miss my snuggles, but can say that I'm not ready to have him back yet.  We would have a hard time giving him the exercise he needs, and an unexercised dog is a bad behaved dog... last thing we need right now.

I think that's it for now... yes - I owe tonnes of pictures.  It's on the list for when I have help. (the main thing I'm supposed to be doing is napping... but how can I watch over what's going on if I'm napping!?)

A Special Delivery

We've been home for about a week and a half now... losing track of the actual number of days, but perhaps 9?  Things are going well.  Adjusting to a newborn is tough, but a newborn with many special needs - extra tough.  But our support circle is still strong, and we're actually getting a  lot of support through the government (CCAC is now going to provide us with 8 hrs/week of a registered practical nurse to help with Ryan). 

My friend Leslie came by with an envelope that brightened our day.  THANK YOU to everyone who contributed to this gift.  Many of you have already contributed to Ryan in so many ways and we are overwhelmed and surprised by the continued generosity.  I feel like I can't say thank you enough -  and will never be able to say thank you enough.  My already puffy eyes are puffier now.  I wish every one of you could have a cuddle with Ryan, and see him in person, and eventually, hopefully you all will.  Until then, I will try to get pictures posted.... my 'technology' setup is a little less than ideal so getting pics from camera to computer isn't as quick and efficient as I need it to be.  Hence, the mega-delay in promised pics. 

Since he's still sleeping - here's another brief synopsis of the last few days.  Point form of course.

• He has almost pulled his feeding tube out twice now.  I've googled taping methods and have found one that works better
• it takes him almost 12 hours to get his poop out.  It may be all the iron he's on, but last night was a sleepless night for all of us (except Sadie, of course)
• Sadie continues to be happy to have her mommy home and continues to be a superstar big sister
• The oxygen company continues to be unreliable.
• The delivery guy gives me a panic attacks because he smells like an ashtray, wears his ugly old boots in the house and talked to Ryan face to face with his stinky booze/smoke breath.  
• I need to be better with hand hygeine
• I left a store because the clerk had a cold
• I wish we could be out hiking and apple picking and visiting pumpkin patch
• I feel guilty for having those thoughts because we should just be happy we're home
• He's up.  Feeding time.
  
  Thanks again y'all

Home: Day 3

Wow.  This post will be point form because Murphy's law has taken over our house so I may or may not get to finish...

• Ryan is settling in nicely
• Leaving the hospital was much more emotional than I thought.  I've been re-affirmed about how truly amazing our nurses were
• Sadie says, "Ryan's home!" multiple times a day
• He sleeps a lot
• He is still figuring out how to take bottles
• We have to manage his feeding tube by listening to his belly and "injecting" a pop of air into it to ensure it's properly placed before we give him any food/meds through the tube.
• His oxygen tubing is 50 feet long
• He is connected to a monitor that occasionally scares the @#*( out of us during the night for no reason but I'm afraid to turn it off because something might be 'real' one tme
• Sadie is very happy that I'm home
• She is the typical older sister.  One minute wants lots of hugs, next minute wants nothing to do with him... mostly the first
• We feel lucky, stressed, happy, sad, frustrated, confused, hesitantly optimistic, exhausted, energetic, grateful... all at the same time
• We've had visits from a nurse, a respiratory therapist, a physiotherapist, next week a dietician, a trip back to Sinai for eye exam, a pediatrician appt, all in less than a week
• The nurse was very impressed with Ryan and us - that means we may have been taught too well, so we may not qualify for the community care access after about a week.... eek.  I tried to explain that we're doing well because Scott is off and that next week when I'm on my own the picture may look a little different
• To hire a nurse is approx $120 for 3 hours.  It's an expensive nap, but might be necessary in the future
• I'm already making my list of things to bring to our appointment on Monday
• Ryan enjoys sunlight and fresh air.
• He seems to be much more content at home
• He hasn't pooped since Wednesday
• He has a lot of medication that is actually somewhat ok to manage
• There is a lot of paperwork that we have to deal with
• Oxygen machinery is intimidating.  Very intimidating. No candles, no smoking, no shocks in the winter, weekly visits to fill the liquid oxygen tank
• It's hard to be upfront with people about hand hygiene around Ryan.  I asked the physiotherapist to remove her coat when she came inside and she looked at me like I was from Mars.  Dude. How often do you wash your coat. 
• The unknown is scary.  Ryan's been sleeping so much during the day, we may be in for an awake night - thus far he's had a good day/night schedule.
• I'm scared of cold and flu season
• I really want to post some pictures but just don't have time
• If I'm not with one kid, I'm with the other, if I'm not with a kid I'm pumping, if I'm not pumping I'm preparing milk or meds for upcoming feeds, If I'm not doing that I'm washing said pumping equipment or bottles or whatever.  Oh and sometimes we eat, play, walk, tidy.... so when people say I should take time for myself to get a massage.... I don't know how to answer them. Oh and Scott is doing everything else in between... bills,one kid/other kid, cleaning organizing, reminding me to eat
• I thought it was hard when Sadie came home.  Perspective is a funny thing.  
• It's weird to be physically recovered and have a newborn. I would never wish this on anyone, but not having crazy raging hormones (just the occasional crazy rage) or a physical recovery to deal with makes this a whole lot more manageable
• Our horseshoe that lives at our front door has apparently been upside down for the past year... I learned today that it means our luck fell out.  My sister turned it the right way up today... perhaps that's why all this happened.  Who knew!

Ok.  That's good for now.  Supposed to sleep when the baby sleeps right?  Hard part is it takes me like an hour to fall asleep and he's due to eat in an hour. 

The Most Important Post. EVER.

I can't believe I'm late writing this post!  I envisioned an "as it happens" post for when this day came, but like everything else along this journey, the best laid plans don't always work out.  The bottom line is RYAN IS HOME.  Did you see that??

RYAN IS HOME!

We left the hospital on Sept. 20 @ 1 pm.  After 148 days in hospital.  Not the longest stay in history, but a pretty rough one from what we hear.  There were tears, pictures, and stress but we finally got out the door. The amazing, wonderful Nancy even got her shift change so she could walk us down and see Ryan take his first breath of fresh air (mind you the entrance to Mt. Sinai isn't the most ideal place to take one's first breath but you take what you get.  We even took him through the Wendy's drivethru because we were STARVING by the time we got home. 
I only have a moment to write because both kids will be up shortly.  He's doing great.  We are managing the oxygen and the feeding tube well and he's sleeping most times he's supposed to sleep.  One thing we're waiting on is a poop. 

This is not my last post. As Ryan is still kind of a home patient, his road continues.  We've had a revolving door of nurses, oxygen deliveries, physiotherapist, nutritionist (next week)...

Gotta go.  Will write more later.   Maybe.

Sept 16

We're in a bit of a state of limbo at the moment. Medically, Ryan's ready to come home...meaning he doesn't have any spells, and his oxygen levels are good. However - we're waiting on the home oxygen installation, he needs to have another hearing assessment done, and he's still not having oral feeds for the whole day.  They've given us the option of giving him a longer lasting feeding tube so that if he's too tired to finish his bottle, we can give him the rest of the milk through the tube.  It sounds intimidating and scary at first, but I've been learning how to manage all this kind of stuff over the last couple weeks, and we'd be 'trained' to deal with the tube before he comes home.  SO - this leaves us with the decision - should we wait it out at Sinai or move him up to newmarket.  We've been going over the pros and cons all week. If I had more time I'd write out the list here... but Sadie's due to wake up any moment.  My gut says get this kid home.  He needs consistent feeders, fresh air, and his family. From a selfish standpoint, I'm done with hospitals.  The bottom line is we do what's best for Ryan. Take everyone out of the equation and figure out what's best for him.  The staff doctor that is taking care of him now seems to be be a little on the fence - hence the limbo.  The only real benefit to having him in Newmarket is that we'd get to meet some of the team up in this area... will we not meet them anyways as outpatients? We're so close... but so far.... The tentative homecoming date was set for Thursday, but I don't know if it's really going to happen.
It's been a LONG road (over 140 days now) and out support system has been, and continues to be AMAZING.  Thank you to Leslie for her Guest post the other day.  Ryan is one lucky little dude with a huge cheering section behind him.  His room is coming together nicely, although it's not your typical nursery... we've put a single bed in there so that one of us can be with him and the other can sleep, he'll have a big oxygen tank, and a small pharmacy area for all his medication.  Toys R Us had an amazing deal on a pretty awesome video monitor that can zoom in on the baby, which is perfect so we can check to see his oxygen prongs are in correctly.  Our little house is going to be busting at the seams soon enough with all his "stations".  But... at least he'll be HOME.  Eventually.

Sept. 3 - 5

Where did the summer go!? The day Ryan was born, it snowed.  It may even snow the day he comes home at the rate we're going... We're now approaching past day 130.  (I started writing this entry on the 3rd and it's now the 5th). I haven't downloaded any pictures yet, and there are some cute ones!  It's been all about eating, eating, eating (for Ryan, not me).  I've been doing 10 - 12 hour shifts at the hospital so he has some consistency to practice bottlefeeding - plus driving time.  The remainder of my time is with Sadie, or sleeping... sorry husband, dog, and house.  Ryan's been having a hard time with bottle feeding. It's a long, complicated story to try and explain, so I won't go into it right now.  Preemie babies commonly have reflux issues.  Preemie babies with chronic lung disease have more severe issues.  He's got both strikes against him.  Add on the fact that to him, feeding for him is like an overweight smoker running up a giant flight of stairs, and he has to do it 8 times a day.  Sometimes it takes him 40 minutes to get 25 mls of milk (his full feed is 65 70 now).  That means he probably just burned all those calories, therefore he's not gaining weight.  Then, because he's not gaining weight they add more 'calories' (formula) to the breastmilk... by adding these extra calories, the milk gets thicker and harder to digest, and can agitate the reflux.  Are you seeing this vicious circle that we're in...? It's like we can see the finish line but we just. can't. reach. it. The hardest part about this week was a blissful 24 hours where he bottle fed like a CHAMP and we were told he may come home next tuesday!  Then... he got tired. He decided that bottles are for the birds and it looks like we'll be there for a while longer.  They want to sort out his eating issues before they send him up to Newmarket  or home so we have the resources we need and doctors who know him.  Fair enough.  Thank goodness for our nurses, our patient families, and my "beautiful" husband who have been picking up a lot of the slack in my absence.  Sadie hasn't skipped a beat.  She's happy and hilarious as ever. I'm excited to share the pictures of her 'holding' Ryan for the first time. 

P.S.  I read Leslie's guest post (how could I not) and I'm speechless. I wish I could find the time to properly thank each and every one of you who has helped us along the way.  I bought a giant box of thank you cards.... but they're sitting on my dresser waiting to be opened... they'll have to wait a while longer.

A Guest Post

Hi Everyone! My name is Leslie. I’m a good friend of Kerri and Scott’s and I’ve convinced Kerri to let me be a “guest blogger” today  I thought this would be the best way to reach everyone who loves Kerri, Scott, Sadie and Ryan. Ryan the brave, will hopefully be coming home soon (Yay!) and in lieu of a traditional welcome home baby shower (as Ryan won’t be able to be around large groups of people quite yet) I thought it would be nice to coordinate a group gift for the McPhails to congratulate them on their looooong…difficult and continuous adventure with Ryan. Along with our continued emotional and physical support, which I know is so appreciated, I think Kerri and Scott are in real need of a different kind of support. When Ryan comes home he is going to need continuous, specialized care and equipment and all of this costs money unfortunately. If anyone is interested in joining me in giving a monetary gift (even just modest amounts) please email me at lesliejaneferguson@hotmail.com

Of course I know there will be those of you already planning on your own personal gifts. For anyone who doesn’t already have Kerri and Scott’s mailing address, you can email me and I will send it to you.

So thanks for reading and for cheering on Ryan, and loving Sadie and supporting Kerri and Scott and lets hope that Kerri keeps her promise to not read this blog entry ;)

Leslie

Aug 24

We are approaching day 120... Ryan weighs almost 7 lbs now and we are the 2nd 'oldest' family in the unit.  There is a couple who have been there 8 days longer than we have... wonder will be going home first.  Not much to report, which is a good thing.  I'm stealing 5 minutes to write because Sadie's decided to sleep in! Still working on feeding, I think we found a good bottle, now it's just a matter of Ryan's stamina and ability to take the whole 60 mls.  If I could sit there all day and breastfeed, I'm sure he'd be home in no time, but that's just not possible yet.  I'd never see Sadie, and it would be really hard on everyone else.  I think that by the week after next, they'll want me to try it to see how he does.  The longer we're there, the higher the risk for a setback like infection. 
We did a 3 hour CPR course last night... well, it was about an 1.5 hrs of CPR, and 1.5 hrs of scaring you about how dangerous EVERYTHING is and how many rules we broke when we brought Sadie home.... oops. I'm sure we would've been more careful if she'd been in the 'at risk' categories like Ryan.  
I'm overdue for pictures I've uploaded the latest from my phone, but not my actual camera.  Been thinking about our 'thank you' gifts for the nurses and the hospital.  I ordered charm necklaces for our 3 primaries.  A lady in portland makes sterling silver jewelry.  I got her to put a charm that says breathe, an angel wing, a baby foot, and Ry's birthstone on the necklaces.  Will post pics when they arrive.  Excited to see them! 
Time to get my girl up - we have a date in the pool this morning.

A video!

Aug 18. Day 113

We have been in the Level 2 for almost 2 weeks.  Ryan has now been extubated longer than he was intubated.  He's breastfeeding 3 times a day and attempts a bottle twice a day.  He is still figuring out the whole eating thing... it, like everything else, is taking time.  Eating is very tiring - if he's tired, he can't eat, if he's hungry he can't sleep... if he can't sleep, he can't grow... it's all very confusing, and somewhat stressful, because as of now, the only reason he's not home is because he's not feeding all day.  Weight gain is also a challenge because he'll start dropping weight as he breastfeeds more because it burns calories.  We're searching for the perfect bottle that will work for him.  Some nipples are too floppy, too fast, too big... we need one that's juuuust right.  After 3 weeks of vacation, Nancy comes back Thursday.  Hooray!  Karen and Cathy have been awesome, but it will be nice to have our whole team back. 

Here are some pics.  For the 'big babies', Cathy takes the oxygen hose from the bagging system and puts it in the bath for a nice jacuzzi... I've never seen him so relaxed.  He's gonna be a waterbaby.

Jacuzzi time

Half-pint

Little girl and a big dog

August 8th. 103 days

On Ryan's 100th day birthday, one of the docs came up to us and said that we 'might' be moved out of NICU to the level 2 nursery.  After so many days, I've finally learned not to get my hopes up, however, the stars aligned and they moved him!  He's now a resident of the level 2 nursery and is doing well.  We are working on getting the boy feeding.  Feeding is what will get this guy home.  He seems to be a bit of a 'boob man' thus far, which is good, but he also needs to have bottles - which, like everything else, is taking time. 
In other very good news, his brain hemorrhage has resolved, hooray!  His ventricles are still swollen, but they haven't gotten any worse.  His eyes are the same as well... slight improvement was noted but he's still on weekly checks. 
I actually spoke to the discharge nurse today to discuss arranging the home oxygen.  It is a little daunting talking about the 'big tanks' that will be on each floor, and the tubing, and the monitoring... but we'll sort it all out.  A video monitor is definitely on the 'to get' list.  We haven't really thought much about his nursery, but it seems like now's a good time to start thinking.  Maybe soon  we can start breathing.

Day 100!

I'm writing this post on Day 99 a) because I'm actually home and it's only 9 pm b) Sadie's in bed c) True Blood is on tomorrow night.

This is a pretty significant milestone.  There have been times when we didn't think we'd make it this far. Also, this wee blog is about 20 views away from 10 000 pageviews!  I know that almost half are from the grandparents who are 'worried they didn't get the email update' but no matter, thank you everyone for reading and for your continued support.  We couldn't have made it this far without you. 

First, I'll make you read a little update - then I'll show you some pictures.  I've kind of lost track of exact dates, and I've been less than reliable with updating (wasn't that the goal of this blog in the beginning - to help me keep track of things?).  In terms of ventilation, Ryan had been doing well on his byphasic so they moved him to c-pap (the same machine, but with less pressure).  He was able to come off the machine and go onto high flow oxygen to work on oral feeds. From there, they decided to take him off c-pap and put him onto low flow oxygen to see how he did. That means no nose thingy, and no machine - just oxygen prongs in his nose and a steady flow of oxygen.  He's doing all the work.  So far so good.  He's requiring a lot of oxygen, but not more than they'd anticipated.  It has been about 72 hours.  It is still very possible that he will get tired and they will have to put him back on cpap, but for now he's doing well.  He will most likely come home with low flow oxygen.

As far as feeding goes, he's getting better and better (when he's not too sleepy).  He's up to 4 oral feeds a day (out of 8 feeds).  He's not super consistent on the breast or bottle but he's had some success with both so we're happy.   He's not gaining as much weight as the dietitian would like, so they're supplementing him with lots of extra calories.  They've also started giving him some medication for reflux.  It's very common in preemies and they like to give the medication because reflux can cause feeding aversions and they'd like to avoid that (obviously). We noticed he'd cough and gag a little before and after feedings and this is a sign of reflux.  After tracking those episodes they decided to start the meds.  I would like to do a nice montage of "where we were/where we are" pictures, but this ol' computer just can't take it... nor can my patience for formatting and trying to make it all look pretty.  Sorry to disappoint, but this is all ya get for now.

*Thanks to a wicked loud thunderstorm, it's now 5 am on the 5th, and we have 10 007 pageviews and Ry is officially 100. 





Aug 4, 99 days old



Day 100: Where we were and where we are

May 2 - 4 days old

Aug. 3, 98 days old





May 2

Aug 4, 99 days (on low flow)



Goodnight



July 26

We had a family meeting today.  I'm like a Pavlovian dog when it comes to these meetings - I walk into the room and immediately feel like I'm going to cry.  We've had some pretty intense meetings over the last 89 days. Yep. 89 days.  Today's meeting was very different.  We actually heard the words 'h.o.m.e' and 'discharge plan'.  I can't 'say' those words too loudly, because I don't want to jinx them - but am embracing the light at the end of this very long tunnel.  They would like Ryan to be home by his due date (not likely, they know that), if that doesn't happen, they'd like him home as soon as possible after the due date.  Barring any unforseen setbacks (mostly infection or his eyes taking a turn for the worse), she said she would guess that it won't be more than 2 months. 1 month is best case scenario, but as we've learned the hard way, best case doesn't usually happen in the nicu.  We've heard from countless parents who are close to their discharge date and something happens. 
Now, for the next 2 weeks is to get the boy eating. Starting now, he's having 2 full feeds/day and on Saturday night, our nurse Karen is going to give him a bottle at one point during the night (bottle of breastmilk).  I have no problem with them introducing a bottle a) because I can't be at the hospital 24/7 to feed him... I would, if he was our only kid. b) (men ignore this point) I'm using a nipple shield, so the transition from boob to bottle will be easier (they recommend this shield to these little guys to make it easier and less tiring).  c) Scott can do nighttime feedings once and a while, hooray!

Ryan will most likely come home needing oxygen.  This is somewhat scary, but very common and the hospital does a lot to help facilitate the setup at home.  Otherwise, when he comes home, he'll be a 'regular' baby - no tubes, no monitors, no nurse (yikes!).  So it's my job now to get to know his 'normal' and start doing more of his care at the hospital.  He'll be 38 weeks next week, so that means he'll be 'term' so we're getting down to crunch time. 

It feels scary and surreal that things have taken this turn and I can only hope they stay on this path.  He's been extubated for a little over a month.  I'm excited for the day that he'll be extubated for longer than he was intubated (he was on a vent for 7 weeks, so about 3 more to go). 

We'll still need a lot of positive vibes sent our way - he'll need all the help he can get to get to where he can  make the trip from Toronto to Newmarket.  Thanks again to everyone who've helped us get to this point.

I'm listening to Sadie try to fall asleep with a stuffy nose - this is frightening because I CANNOT get sick but she needs her mommy... perhaps this may be a setback waiting to happen.  If mommy gets sick, mommy can't go feed Ryan... if Ryan doesn't eat, it will take him longer to come come.... argh.

July 25

Ummmm... where did July go? 
We've been taking more steps in the right direction... Biphasic pressures have been weaned from 10 to 8, this is good because his high flow oxygen has been providing pressures of 5.  Once biphasic can be on 5, they can switch him to Cpap.  Their goal is to get him off the machine completely so they're definitely making him work.  He had a full 'nutritive' feed yesterday and ate like a champ... actually, he's better at breastfeeding than Sadie was.  Let's hope that continues.  I ALWAYS get nervous when things are this good.  Everyone else is allowed to be happy, I will stay on guard.

July 22... Pictures!!

We've had a good week.  We've now moved to 5 mins of 'nutritive sucking' once a day, and Ryan is on high flow for 1.5 hrs in the morning and an hour at midnight.  The thought is to try and get him on high flow for 3 hrs in a row starting next week, and doing 2 feeding sessions.  So far, he seems to like eating the proper way.  It's a long way until they can remove his tube, but we're on the right track.

His eyes are still a concern, so he'll continue to be monitored weekly.  Not that he's close to being able to, but he can't be moved to Newmarket until his eyes are no longer an issue because if he needs surgery it's only done at Sick Kids.  Cross fingers for no surgery!

In other news, we continue to be in contact isolation - but we were able to move to a new bedspace in a more quiet corner which is nice.  Ryan has the 'common' strain of the bug, which means he got it from another baby.  Bummer.  Since we've started the feeds, my hospital visits are becoming much longer, it'll almost be like commuting to work since I'll have to be down there for 2 feeds. It'll be an adjustment for everyone once again.

Here are some pics of what we've been up to...

hello.

Walking on the boardwalk before mommy heads downtown.



Snuggle in a new sleeper.  July 5



Bathtime! July 10

July 12



Ryan - 4 lbs 7 oz  July 12, 2012



Sadie - 8 lbs  Nov 9, 2009

Tucked in July 12

High flow! July 16

July 18

July 18

July 18



**No wonder I don't put pictues up often, this took me over an hour and a half!! Our ol' laptop has a hard time with all the pics

July 16 - 80 days old

... or 12 weeks... or 36 weeks gestation. 

A big day for me and Ryan today - a day I thought was a long way off/might never happen, but the stars aligned (I just spelled stats instead of stars, but his stats aligned as well;-) and we were able to take him off his biphasic machine and put him on 'high flow' for some NNS.  Let me explain.  What is high flow? It is straight up oxygen delivered through nasal prongs - no mask, no pressures.  Facial freedom.  What is NNS?  Non Nutritive Sucking. It's basically breastfeeding minus the feeding part.  It's just to let Ryan 'explore' and smell, and if we're lucky (which we were) to get a wee bit of milk.  They don't want him to actually feed, because he obviously doesn't know how and would choke.  He was on high flow for 35 mintues, just what the doctor wanted him to start with.  Tomorrow they'd like to have him do an hour, and so on and so on every day until eventually they can get him to cpap, then to low flow, then home.  This can apparently be a LONG process, but I'm glad the wheels are in motion.  It was great to see everyone's excitement about our lil milestone today.  RTs and nurses were all pretty smiley.  I'm feeling hesitantly happy because I'm still scared of setbacks but I'll take this small victory for what it was. Good boy.  Good night.

July 14

Had a nice morning visit with Ryan today.
Big news.  On Thursday night, Nancy and I said farewell isolette and put Ryan in a crib.  He was technically ready a week or so ago because he was 2000 g and was regulating his own temp, but we wanted to play it safe with the serratia bug and all.  He's doing well in it. He's like a 'real' baby, and likes to be swaddled.  They put a blanket across the top to keep the light out, and because he's still on all the monitors and probes, he's allowed to have comfy rolls and to still be on his tummy.   Apparently when they reach term (36 weeks) they're not 'supposed' to be on their tummy's anymore, but when their lungs are still bad, they make some exceptions.
As for the Serratia, the typing came back, and it turns out that 5 kids had the same strain, 2 had the same strain, and 1 had it's own strain.  The 2 and 5 mean that they were passed within the NICU.   We haven't been told where Ry fits in there, but I'm thinking he's one of the 5 because he had had 2 negative swabs, then a positive one.  I was very upset when I found out because it could mean months of his nurses having to wear gowns and gloves when they handle him.  We also got moved to a different part of the unit, so now we're right in the middle, next to a sink and a garbage. It's even brighter and noisier than our old corner. Hopefully once this 'outbreak' settles down, we'll be able to be moved to a better area. There have been no more new cases as of yet, so hopefully things will calm down soon.  I could rant for another couple paragraphs about why I'm bothered by this whole thing, but I won't.  It's done. Nothing can be done to change it.  Moving on.  People are still allowed to visit us in the NICU, the same as before - everyone just has to be conscious of hand hygiene, but that's not anything new. 
I'm due to post some pictures, looking back at the camera, there are many.  Stay tuned.

July 12

(I wrote this on the 12th, but had technical problems... will do a current update later if time.)

A few busy days this week.  Ryan's been stable, still on biphasic but still requiring at least 50 % oxygen (room air is 21%).  They've started giving him an inhaled steroid (like what people with asthma take) to see if that can help lower his oxygen requirements.  They've also given him a diuretic so that they can get rid of any excess fluid on his lungs - all in hopes of decreasing inflamation in the lungs and decreasing his O2 requirements.  He's gaining weight steadily and is on an every 3 hour feeding schedule (like a regular baby).
BUT.  There has been a number of cases of a bacteria called Serratia in the NICU - at 10 days babies bums are swabbed to check for bacteria (Ryan's was negative).  Every-so often these swabs are done to ensure there are no weird bugs going around.  One thing led to another, and a few babies had 'colonized' the bacteria.  This means they're not 'infected', but they are growing the bacteria in their bowels.... ugh.  So.  Ryan's wee neighbour tested positive for the bug, and was put in 'isolation'  what that means is that the nurses who are handling him need to wear a gown and gloves when they enter his isolette.  The hospital began swabbing every 48 hours.... after the 2nd rounds of swabs, Ry's came back positive.  As did 11 other babies.  :-(
They've now clustered all the colonized babies and their nurses have to wear gowns and gloves.  Parents don't have to since we're not touching any other babies.  Today we find out whether the bug is from different 'families' (which would mean it's not been passed through the NICU) or from the same families (meaning it was).  Yesterday we had a meeting with infection control and tomorrow we'll have another one to hear what they're going to do.
LUCKILY there hasn't been anyone 'infected' by the bug, and everyone is being watched very carefully.  It's still a risk though, and if infection does occur, it's pretty serious so we're obviously worried about this.  It also sucks being isolated because you feel alienated.  I also don't like the fact that Ry doesn't get to feel warm hands on him, just sticky gloves.  Hopefully his mighty immune system will kick in and beat the bug so he can come out of isolation.  I've been looking into what I can take (a probiotic?) so that some of the extra good stuff can get into my milk... I doubt it, but it might be worth a shot.
In other news, Sadie has been loving G & G's pool and has been getting more and more confident in the water.  It's also a nice break for me to be out in some fresh air for part of the day.
I also have to continue my big 'thank yous' to people who have been helping us out.  I went to my first spin class since this all started, and my wonderful gym has given me 2 free months to come as I can since I really can't commit to investing the time/money to a gym right now.  Love those ladies.

July 4

Intense is an understatement when it comes to what's been happening over the last few weeks.  Tumultuous is a word I rarely use (nor do I know how to spell it), but think it might be appropriate... I don't even really know where to start to write about what's been going on so here goes.

We've basically gone from nearly deciding to take Ryan off life-support because it was looking like his lungs were not responding to the steroid treatment (which was a last resort).  We spent an entire tear-filled weekend in the city by his side the entire time watching and waiting for some sort of sign that he was responding to treatment - we were devastated.  Out of desperation, we talked to numerous doctors and were encouraged to let the steroids run their course and see what happened.  Low and behold, they started to work, right at the end... He was successfully extubated on June 24, and has remained on the Biphasic machine since.  (Biphasic is a machine that gives puffs of air through his nose rather than the tube that went into his lungs, it's a much gentler form of ventilation - next step is c-pap) We are by no means out of the woods as he still requires the maximum ventilation that this machine can supply, and his oxygen reserves are negligible (he can't be off the machine for more than a couple minutes).  However, he's still showing signs of fighting.

It has been a very hard time for us, constantly debating if we are putting him through too much - how much can these little bodies take - is it fair to him to go through all this stuff - what sort of life will he have after this is all done - how much pain is he really in... the list goes on and on.  All we can do is trust our instincts and our medical team, and know that we are doing everything in our power to keep him comfortable and to ensure that he has the best possible outcome. 

As I said, we are not out of the woods.  After his routine eye exam, they found that he has ROP (retinopathy of prematurity).  This is an eye disease that effects preemies, especially those exposed to high levels of oxygen... He had his follow up check and it was the same, so he'll continue to be on weekly monitoring.  Treatment would involve him having to be re-intubated for 24 hours, which no one is in a hurry to want to do, but if left untreated, it could cause blindness.  Treatment also involves going over to Sick Kids and they do a laser surgery. We're watching his oxygen levels closely, and hoping that it doesn't progress to the stage that will require treatment.  Each day off a ventilator is so much better for his lungs.

What's happening now...  he is stable.  He's needing oxygen and pressures from the biphasic, so we're hoping that eventually his oxygen requirements will go down, and they can wean some of the pressure. Nancy has told us that could take a long time.  Until he tells us one way or another, we'll wait. It's much easier to take him out of his isolette now, so we've been enjoying lots of cuddles.  He's a 'big' guy now, so he's wearing clothes and regulating his own temperature.  Within the next few days, he may even be moved to a crib.  These are all good things that I say with that fear in the back of my mind - anticipating the next downhill ride on this roller coaster.

To end on a positive note - when Scott asked Sadie if she wanted me to say anything to Ryan for her, she said, "I love you Ryan."

Long Overdue Post (and pictures!)

I finally have a little time to sit and write... not really my ideal way to spend the evening... Sadie's asleep, and I'd really like to be having my Ryan snuggle, but unfortunately on my way to the hospital, this happened...

.... Yup, that's the bottom of our car falling off.  The other night on my way home from the hospital, there was a bunch of foam insulation scattered across the 404, and since it was dark, and there was debris all across 3 lanes, I ran over a fairly large chunk.  No harm done (I thought)... Today when I was driving I heard something that sounded like maybe a flat tire so I pulled off at a mall to check it out.  Bummer. I turned around and headed to the dealer (driving slowly up a VERY busy road in rush hour).  To me it doesn't look like a cheap and/or easy fix... is there even such thing in the automotive repair world!!??  So - it's a forced night off for me, and I'm not gonna lie, it's tough not seeing him.  We've had A LOT of time together in the last few weeks.  I've called the unit a bunch of times, and he's doing well.  I will get into the Ryan update in the next post, but first - more pictures.

His new label after returning to Sinai after his surgery. So nice.



A Father's Day cuddle.  June 17



Can't remember if I posted a pic of this yet, but it was a pretty big deal. (He's now over 1900 g!)



June 20, wearing a hat made by our friend Jen




June 23.  The day before his extubation, think he's excited?




Your wish is our command.  Extubated June 24




Us and Nancy, our angel - also, first cuddle on BiPhasic machine




June 24




Rockin' his first onesie, June 30




Peek-a-boo! July 1




July 2




A nice surprise the night nurses made




A moment with no tubes! July 2



New sleeper! July 4

 There's a lot to write about, so I'm going to do a separate post to update on what's going on.  Stay tuned...

June 29

Seems fitting to do a post today, because Ryan was 2 months old yesterday... Corrected, that's 33 weeks and 3 days.  Fastest and slowest 2 months of our lives.  It's also my mom's 60th birthday today.  We were lucky enough to have the morning together.  Sadie planned the party which consisted of purple cupcakes, mac and cheese, party hats, and a swim.  After the party, I hitched a ride to the hospital and Scott met me after work.  We've been putting in a lot of time with Mr. Ryan, and he's been doing ok.  Still on the byphasic machine, which is great.  He had his last dose of steroids yesterday afternoon, so the next few days will tell us whether his lungs can support him.  He also had his eyes tested, unfortunately the exam showed retinal damage - this is mostly caused by the amount of oxygen he has required.  They're following up next Tuesday, and after that we'll have to discuss a course of action.  This weekend his 'elite' team is on (Karen and Nancy) so he'll be in good hands. 

How Fitting...

Found this image on Pinterest...  Must go print it out and put it beside Ryan's bed.

June 25

Quick note.  Day 9 of 9 day steroid treatment was on Sunday.  On Sunday morning at 9 am, they took out Ryan's breathing tube and replaced the jet ventilator with a byphasic machine which is MUCH easier on his lungs, and he can now turn his head. (It gives him puffs of air, but he still has to do a lot of breathing on his own) He has surprised everyone and has made been successful for about 18 hrs now.  We're by no means out of the woods yet, and will know more by the end of this week.  In the meantime, we're still spending lots of time with him and hoping hoping hoping that his lungs will support him without the help of the steroids. It's been pretty cool watching him learn how to breathe.