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