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...