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