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.  

June 21

I owe an update.  This is the first time I've been on my laptop since Friday.  I'll be brief.  Ryan has been on the steroids for 6 days.  He's had some good days and they were happy with his progress and started weaning his ventilation. They even talked about taking his breathing tube out to see how he'd do.  However, as is typical with this roller coaster ride, that's not happening.  He had a rough night last night and has now increased his ventilation settings and will not be extubated.  Our wee man has been putting up a great fight, and the medical world has obviously been a huge help in his fight.  Unfortunately, the steroid treatment is medicine's last option.  The rest is left up to fate, magic, miracles... I don't know.... The bottom line is we're worried.  That's all I'll say at this point.  There's no point in 'guessing' what will happen.  For a while we were living moment by moment, then it was day by day, then week by week.  At this point, I think we're in between living day by day. Trying to enjoy all the time we have with him, yet still keep life peaceful and fun for Sadie.  Sometimes we're good at it, sometimes we're not.

June 15.... Deep Breaths...

I didn't realize this title had a double meaning until after I wrote it.  Today's a family meeting (sitting down with doctors, nurses, social worker)- which ALWAYS makes me nervous so at the beginning of the last one, the social worker made stop and take deep breaths before we started... I've been trying to relax - took Sadie to a friend's house for a swim this morning, but now that the time has come, my deep breaths are rather shallow... (as an aside, I've realized that under stress, I revert to my teenage eating habits - today's lunch - pizza, pop, and a chocolate bar... I NEVER eat chocolate bars).
The other meaning of the title is that the main topic of conversation today will be Ryan's lungs... the next steps... and (hopefully not) last resorts...
Hope to be able to write tonight, but might not be able to.  Here we go...

June 12

Things are pretty quiet for the time being.  The goal now is to have Ryan rest, eat, and grow.  Eventually, we will have to address his lungs - which continue to be in pretty bad shape.  The steroids did help, a little - now they need to grow.  We may need to consider another round of steroids, and hopefully since his duct should no longer be an issue, they may work even better (obviously it'd be better if we didn't need them at all). It's also a goal to get him extubated and breathing with the byphasic or CPAP machine... this is a pretty tall order because his ventilation settings are still pretty high. There are other babies the same age or younger who are on those machines, I guess their lungs are in better shape. I was chatting with his nurses and they said he has what they call "White boy syndrome". I guess in their years of experience, they find that these poor lil' white boys are the ones who take the longest to get better.  They said that African American and East Indian babies do the best, and the very toughest are the African American girls.  (This has not been proven fact - merely an observation from some the nursing staff that I thought was interesting).  Unfortunately our baby boy is the whitest white boy - it's his blond hair that's holding him back ;). 

While I was holding Ryan today, Nancy asked me how his ribs are doing.... I didn't know there was anything wrong with his ribs. Apparently in his discharge summary, they'd recorded that he had 2 fractured ribs after his surgery. HUH??!!  The surgeon told us the surgery was fine - I'd assume if there were fractured ribs, he might mention that.  Ryan's doctor came over pretty quickly after Nancy told her I hadn't been informed- she said it's common after the duct surgery because that's how they get to the duct - through the ribs.  We'd been told that, but nothing mentioned about breaking ribs.  I took the news surprisingly well but felt a little unsettled after I got home so gave the hospital a call - the discharge doctor called me back pretty quickly and said that one xray was reported to show fractures, the next one didn't mention fractures.  They're going to look into it and get back to me tomorrow.  The bottom line is that Ryan is ok - doesn't seem to be in any extra pain, and handled our cuddle very well today.  If the ribs were in fact cracked, there's nothing they can do - these babies (as we know) are super resilient, and apparently very bendy. It'd be nice to know the true story though.

Breaking news: Just got an email from Karen (our 3rd primary nurse).  She spoke with one of the docs who said that they don't have to disclose the broken ribs. "it happens with ligation'.  So weird, since this whole experience seems to be all about full disclosure and giving us worse case scenarios.  Oh well.  At least he's not suffering.

June 10 - Moving Day

If all goes according to plan, Ryan will be back to Sinai tonight.  I talked to Nancy today, and she said his old bedspace is empty - so hopefully we'll be 'home' soon.  Scott's down with Ryan today, and I've had a Sadie day.  We had our first swim in G & G's pool, which Sadie loved.  It was the most exercise I've had other than taking the stairs to the NICU.  We'll be back in tonight for another dip I'm sure. 
Ryan's doing ok... had a so-so day with lots of swinging and DSATs.... the surgery won't be an immediate cure for these swings, his lungs are now the problem, and they just need time to grow.
Today's lesson for me is giving up control.  I'd love to be there for the transport so that I can see him get settled into his new bed and know for myself that he's ok.  Luckily Scott's taking an extra-long day so that he can stay and see our boy get settled.  If he wasn't there, I'm pretty sure I'd be making a late-night trip to make sure everything is ok. I feel protective of him because he's a different baby after his surgery, and his nurses are going to have to re-acquaint themselves with the new Ryan - that's why I want to be there... I'm sure they're happy enough to not have me hovering and telling them things they either already know, or will very easily find out.  Maybe a glass of wine by the pool is all I need. 

June 9 - 6 weeks down!

Hard to believe that Ryan was born 6 weeks ago today. That also means my 'recommended' recovery time is done too.  He is almost 31 weeks old and weighs about 3 pounds.  Not sure how long he is - haven't measured his length in a while.  His recovery is going ok.  His nurses have said he's not doing awesome, but he's not doing poorly.  "Status quo" they've said.  He had another blood transfusion today to help get his red blood cells back up, that should help with his oxygen saturation.  I'm in debt 2 blood donations now, once things get settled down.  If you have a chance and can do it - donate blood!
They've started the paperwork to get us transferred back to Sinai - they gave away our spot, so now we have to wait for a bed to open up.  In terms of his lungs, they say for now, it's just time and letting him grow.  Sinai may opt for another round of steroids once he's recovered from the surgery.  We'll see.  Fingers crossed for no infection... with all his IVs and the incision, and stitch where there was a drainage bag, it's very possible. Although we'll miss the peaceful quiet room at Sick Kids, we're looking forward to our familiar nurses at Sinai.

June 7

After a long week of waiting, the PDA ligation is complete. Now Ryan will forever have a tiny metal clamp in his chest (the doctor said it's so small it won't set metal detectors off, phewwf). The doctor said surgery was a success. After it was complete, I felt 10 lbs lighter with this weight off my shoulders.... I hesitate to wriet that, because there are still complications that can arise, but hopefully the worst is over. It's been an emotional week, preparing for surgery, having it be postponed, not having an idea of when it was going to happen, one of the harder parts was seeing the families at sick kids with kids way sicker than Ryan and knowing that some of the reasons for the delays were because of complications during other surgeries. 
We came home to get some sleep.  As we left just after 9, Ryan was starting to wake up and seemed ok  They gave him some medicine to lower his blood pressure because his body has to learn to circulate blood in a whole new way and that's hard when you're tiny!  Tonight we go to sleep hoping our phone stays quiet, but Sadie's at my parent's house just in case we get a dreaded call. 
I've gotten a few more grey hairs and worry lines and have started to become a bit of a stress-eater... those caramel fudge squares that Scott picked up for me from Starbucks, sure made waiting for surgery slightly tolerable.
Ryan was just under 3 pounds today - getting to be a 'big boy'.  He's 30 weeks and 4 days.  

June 5

I'm considering changing the title of this blog to Ryan's Rollercoaster Ride Home.  It's been a quiet few days of waiting for the PDA ligation.  Ryan's been stable and comfortable, and we've had some good quality cuddles. Sick Kids is a nice place to wait, but we definitely want to get this over with sooner than later. 
I shouldn't write this, but today the nurse told me that his latest Echo showed that the duct has gotten smaller.  That means, they're going to talk to the surgeon to take a look to see if it's even worth doing the surgery.  I haven't spoken to any doctors yet, which is why I'm hesitant to write this news, but it's all a part of the ride.  Who knows what this afternoon will bring...  In my opinion (which has been wrong 90% of the time) he still needs the surgery because his duct has gotten smaller before, then got larger again.  He's also still 'swinging' quite a bit which the nurses have all said is mostly a result of the duct being open.  I'd like to be wrong on this because no surgery is always a better option. 

Oh yeah - our big boy weighed 2 lbs 13 oz yesterday, remember he was born at 1 lb 12 oz!?  Gained a whole pound.  It looks good on him. 
Another nice thing is that Nancy has come over on her dinner break the last 2 days she's been working to check in.  

I also need to say another big THANK YOU again to everyone that continues to show us support in the form of well-wishes, food, offers to help, activities for Sadie, texts, emails, etc. Now, if anyone knows of a good house cleaner in the area - feel free to send the info!  It's so great to be surrounded by so much love.  Hopefully a good-news post to follow shortly.

June 2 - 5 weeks... and pictures!



Getting settled for a cuddle - May 26



Relaxing, June 2

Peek!

Holding onto his tube... don't pull it out!

Good news is the blood culture was negative, so no infection.  If all goes well, we'll get a spot for the surgery early this week.... FINGERS CROSSED!  Although Sick Kids has been great (and they have super-comfy recliners for cuddle time), we miss Nancy and our Sinai friends.