Tuesday, July 19, 2016

Cleft Surgery #4

I know I don't write much about Bailey concerning her cleft (or really about anything at all lately - yeah, sorry 'bout that) but I wanted to make a point to write about it tonight. 

You see, when I was a scared, pregnant mom-to-be carrying a baby already diagnosed with a cleft, I googled. 
Yes, yes. 
I know that is what you're specifically told NOT to do, but really, does anyone actually heed that advice?
Anyway, here I was. At home. Sitting in my basement alone. Staring at the computer screen. I tried every search term; I visited all kinds of different sites. Some sites were good (the BabyCenter cleft support group comes to mind), others were not. I immersed and overwhelmed myself in all things cleft, reading about far too many things I shouldn't have been worried about yet. Looking up statistics. Looking at hundreds of pictures. Worrying myself silly.

Eventually I stopped that. Long before she was born I got myself in order, we met our future plastic surgeon, and I focused on the fact that we were having a baby. I got the worry and freaking-out out of the way so I could move on.

But, I still clearly remember how extremely comforting it was when a coworker linked me up with a friend of hers who had just given birth to a little boy with a cleft lip and palate - exactly what Bailey ended up having.  Yay, finally! Someone to give me real information! - not something more akin to a medical pamphlet.

So while this blog rarely focuses on Bailey's cleft, I also notice that I get traffic from people using keywords like "cleft blog" or "cleft palate information." 
And very likely that is a future or current cleft-parent looking for some validation or reassurance or maybe just some real talk. So that's why I'm writing tonight. Hopefully this gives some insight into what comes after the special bottles and first two surgeries.

So Bailey has had 3 other cleft surgeries up to this point (lip repair, palate repair, nose/lip revision) as well as 5 sets of ear tubes. (For more details, click here.)

This surgery was planned after she had a sleep study completed in May. Bailey has always snored, but her restlessness and complete destruction of her bed at night finally caused us to dig deeper. The study revealed she had sleep apnea, which we were already pretty sure of to begin with.

It was recommended by the ENT to remove her tonsils to hopefully open up her airway. And since our plastic surgeon had mentioned doing a touch-up to her nose and lip either this year or next, we opted to schedule them together. The ordering ENT was not able to coordinate schedules with our plastic surgeon, so we went with another ENT associate.

Bailey was the first surgery scheduled. They took her back on time, and we settled in to wait. About 30 minutes later, our ENT came to our room. Since he wasn't the one who ordered the procedure, he wanted to know exactly why her tonsils were being removed even though they were not enlarged. We talked about the sleep study and her trouble breathing through her nose. 
Then the plastic surgeon walks in.
(Very unusual to have both operating doctors leave and come chat with the parents half-way through. I'm pretty sure our nurse had a mild panic attack!)
We talked over more of what they were seeing in the OR, and we agreed to leave the tonsils and check to see if the adenoids were enlarged and needed removed. Turns out they did. Our doctor told us they were some of the biggest he's seen. They were 100% blocking her from breathing through her nose. 

Not having her tonsils removed was definitely a change in plans, but a positive one. In cleft kids, leaving the tonsils in place for as long as possible is advantageous because it assists the palate in some ways, especially when it comes to speech and swallowing food without leaking. So while many times tonsils and adenoids are removed together, we're glad they didn't have to be in Bailey's case.

For his part our plastic surgeon shaved off scar tissue on the underside of Bailey's lip, shaved down the scar between her nose and lip, and lifted up the cartilage of her right nostril after removing more scar tissue. She has nasal stents in both nostrils to help them hold their shape. 

All I can say is that our girl did awesome!
I don't know if I can adequately describe this child's pain tolerance. 
It's high.
The highest she rated her pain the entire day of surgery was a 2. 
One time.
She denied any pain the rest of the day.

We've been keeping her on Tylenol, and she has to use nasal spray 6-8 times a day. But she can eat normal foods and is back to all normal activities (except swimming). 

It will probably be a week or more until we can tell if the adenoidectomy helped her breathing and sleeping. It would normally be about 4 days, but I'm guessing the facial/nasal swelling might prolong things a bit. We're very hopeful that she will see dramatic improvement in her breathing and be able to get much higher quality sleep.

And to all our friends and family members, we appreciate all the prayers you have said for our girl this week. She felt every one of them! ♥

Sunday, June 26, 2016

Colorado vacation: Well, we did that.

The Ellis family took a week-long trip to Colorado last week. We rented a house in Breckenridge (lukewarm review pending) and spent a lot of hours in the great outdoors.

We caravaned out in three cars and most of us spent our first night at Jared's mom's house in Loveland, while a few beer-loving souls travelled on to Golden, Colorado for a tour of the Coors factory the next morning. Instead of beer, the rest of us loaded up on breakfast food and coffee, Graham included. 

Our started off our first full day with a sisters (and boys) workout early that morning. We ran along a creek through town and stopped later for a gondola ride and other random photo ops.

We spent the afternoon exploring the town and buying souveniers. 

It was a busy and active week. We took a few different hikes. The first was much longer and tougher than we had planned. It was up to a waterfall and it took us a good 3 hours. Bailey came along and was leading the group the entire time. 

The second hike was much easier and only about 30 minutes uphill. We came to a small lake and ate our picnic lunch and checked out the trout swimming around.

The last hike was basically a tiny walk to a scenic overlook of Lake Dillon. And home of countless hungry chipmunks.Adults and kids alike got a huge kick out of feeding them.

We spent one morning white water rafting - which was so much fun! It was through Brown's Canyon on the Arkansas River and rated an "intermediate" level. It was a great trip to start with, but it would be fun to do an advanced rafting trip next time. The guys were in the front of the raft, so they took the brunt of all the cold water (around 40ยบ) but we all got our share of freezing cold water at one point or another. 

We relaxed as well, hitting up a local brewery or two and hanging out in the hot tub at night. One night we played The Game of Things and were laughing till we were crying. (If you haven't played it, you really need to.) We also celebrated Fe's 30th birthday with a small surprise for her one night. 

The trip was memorable for all of us. The mountains were new to all of my sisters, and they all left wanting to come back soon. And I think a few of us were bit by the hiking bug - including Bailey! We all had fun, and who knows, maybe there is another Colorado trip in the future for us sisters some day.  :)

Saturday, May 21, 2016

run, Bailey, run!

We all survived elementary track & field day.
Just barely. 

I enjoyed it. I get a kick out of the little kids. You can tell which ones are already super competitive and which ones are laid back. A stray toddler ran on to the track to run after a relative. Many shoes went flying as their owners wove in and out of lanes during that long 50 meter sprint. It was entertaining.

Bailey was excited to run, but I think she was more focused on trying to locate us in the stands than on her actual race.

Speaking of the stands...
He barely survived the track meet.
Have I mentioned that this kid is adventurous with zero fear?

As the races were finishing up, we sat next to a friend in the stands. She was telling me that her son was afraid of the bleachers because she warned him that he could fall through if he wasn't careful. I'd already told Graham the same thing, but I figured it wouldn't hurt to reiterate. 
Not even 60 seconds later, Graham fell off the 2nd-top-the-top row of bleachers, looking like a game of pinball all the way down to the bottom where he hung above the ground by his elbow.

That was game over. He didn't come back from that one. Although he wasn't really hurt, he was already tired from missing his nap, and the fall just added insult to injury. Off he went, home with Jared. 

There were no winners at the track meet. No one was measuring or keeping tally of anything, which was nice. They all just got to try their hands at the different running and field events, and everyone was having a good time.

Bailey did well at long jump, although I missed her best jump since I was dealing with the injured 3 year-old climber.

That long, curly ponytail makes me smile.

The day finished up with some tug-of-war competitions.
I am not exaggerating when I say that Bailey took this very seriously.
I've never seen her so competitive. 
She went straight to beast mode. 
She was pulling on that rope so hard, she started basically stealing rope from the other team and ended up near the middle of the entire rope by the end. Her enthusiasm got a lot of laughs from the crowd, and she was beaming with pride when her team won.

It's a good thing that it was enjoyable because we have a lot of these days in our future.

Monday, May 16, 2016

May photo randoms

Birthday Breakfast: Daddy's Famous Cinnamon Roll + 5 candles

Grandma Snuggles

Grandpa Wheelbarrow Rides

New in the Solko household
It's like that weird extra room was just waiting for this piano to show up and complete it.

Ladies' Tea at church

I thought digital cameras made it fool-proof and virtually impossible to cut off someone's head. 
Guess not. 

Tiny bowls for tiny chefs

The hat and pink aviators. 
Be still my heart.

Planting with Daddy

A scolding from Daddy

 Back yard chillin' and cupcakes with Papa Alan

Always Fighting/Kicking/Pinching/Hitting/Arguing

"Push me, Papa!"


Photography by Bailey

 Photography by Graham

Photography by Avery