Breathing Updates

No worries, George and Olivia are still breathing easy! Samuel, on the other hand, while he seems to be breathing a little easier, is still working on it :)

Samuel has been home nearly seven months! He first came home on February 23rd, but as you may remember, that didn't go very well... and neither did his homecoming on March 19th. But, since March 29th, it has been nearly seven months that he has been home with us. YEA! We have lots of follow ups with lots of 'ologists, but for right now we'll focus on the breathing... we see our pulmonologist about every three weeks, which is great because it offers a lot of opportunity for feedback and hopefully new orders from the doctor. The more opportunities we have for orders, the more opportunities we have to move forward :) Here's an overview...

(For a recap of the vent, trach collar, and HME, click here... descriptions and photos :) )

March 29th - on the ventilator 24/7, getting daily blood work to test for CO2 retention

April 6th - still on the ventilator 24/7, no new orders at appointment besides trying to keep him home :)

April 21st - still on the vent 24/7, orders to start trying the trach collar for 30 minutes per day. (Tried the trach collar at home back in February and it was a disaster so I was pretty nervous.)

May 11th - still on vent for the most part with short spurts of trach collar. New orders: if he tolerates it, start increasing time on the trach collar by 30 minutes every 3-4 days. Once at 4 hours, then try 4 hours in the morning and 1 in the afternoon - if he tolerates it, increase the afternoon by 1 hour every 3-4 days with a goal of 4 hours in the morning and 4 hours in the afternoon on the trach collar.

June 8th - on the vent for 16 hours and on the trach collar for 8 hours during the day; 4 in the morning followed by a 2 hour rest on the vent and then 4 hours on trach collar in the afternoon. New orders: as tolerated, increase trach collar by an hour every 3-4 days and try to cut out the rest on the vent in the middle of the day and get to 12 hours on trach collar. This is when we got orders for the HME :)

July 15th - still 12 hours at night on the vent, and up to 10 hours during the day on the trach collar, but can't quite get rid of getting a 2-hour mid-day rest on the vent. CO2 levels not good, so no new orders.

August 5th - same as July 15th... ugh. Until you focus on the fact that you're not going backwards... then I guess staying put it's not too terribly bad :)

August 31st - still on the vent all night and doing 10 hours on the trach collar during the day with a 2-hour break on the vent mid-day and on the vent all night (12 hours). BUT, at this visit, CO2 and base excess levels finally decent. New orders - try to be off the vent all day! YEA!

September 21st - off the vent all day and on the vent at night - 12 hours and 12 hours. CO2 still looks good... new orders: try to remain off the vent all day (on the HME) and to be off the vent every 5th night. AGH!!!! That means no switching to the vent for night time every 5th night! HME all day, and every 5th night try the trach collar (provides more humidity than the HME) instead of the vent.

September 21st - a second order, to try the passy muir (speaking valve) for an hour per day with no extra oxygen. I pretty much hit the floor. But I recovered with an "are you sure?" and a smile on my face :)

October 14th - the first order from 9/21 went well and Samuel was off the vent every 5th night... and his CO2 and base excess were great! New orders: to try and be off the vent every 3rd night! What about every 4th night? No clue... but every 3rd night, here we come! Actually, I was very hesitant about it at first, but then I took a deep breath, remembered how much I trust our doctor, and I jumped on board :)

October 14th - the second order from 9/21 did not go as well... Samuel loves his passy muir, but couldn't quite tolerate it for long periods of new time. New order: try passy muir three times per day for shorter periods of time.

There are lots of details not mentioned above... but I needed to see this overview. In the last month I have had a lot of exciting, bowl-me-over moments, but I also have lots of moments when I feel like progress is not happening, or like it's taking too long. But this reminds me it's only been seven months since my little man has gone from completely vent-dependant to now, being off the vent all day and every 3rd night. Wow. Yes, he still has cords and contraptions that help him breathe, but this is the same baby I couldn't walk more than 5 feet with seven months ago unless I was dragging the vent. Unbelievable. Go Samuel!

Some catch-up... even though I missed blogging, we still took photos :) Late August...

Sleepy Samuel literally falling asleep in DB's lap...

... yep, he's definitely asleep...

... now he's sleeping and comfy, too :)

Happy dance in my chair!

What's up camera?! Did you get a good picture of me and my chair... I love this chair!

(We have to watch him closely, Samuel isn't close to ready to sit in a chair unattended, but he really loves it!)

Finally, the box arrived...

... it's a dump truck! For DB?!

For the babies, DB assures me :)

Turns out the bubble wrap in the box was a huge hit! Most photos were blurry from babies swishing around bubble wrap and laughing hysterically :)

DB and George hangin' out... sweet boys.

Olivia, just chillin' :) This girl cracks me up.

I love the couch! Bouncy, bouncy!

Cheese! Samuel's a happy kid, but I'm pretty sure these were also the early days of learning to smile on cue. Ha ha!

Hairdo entirely by Nutella. Yes, really. Ew!

The official introduction... Samuel, this is Scout... Scout, this is Samuel - love him, but don't get any hair in his stoma!

I finally caught my little girl on the piano...

Go figure, the wild child appears tame on the paino :)

The Gang's All Here!

Today I didn't have to miss Samuel when we went to the park... for the first time, EVER, Samuel went somewhere besides to see a doctor! It was awesome :) Granted, everything he came in contact with was thoroughly wiped, and we were extra vigilant about anyone touching him (or even looking at him too closely ;) ), I think he got the full park experience. I love it!

The swing was Samuel's main hangout... and he loved it! Good thing - it was a safe, germ free spot, so he stayed there for a while :) Actually, he was there for a while, but it was because it was something he could actually do and he really did love it. We tried a little slide, but he wasn't too impressed... and after very short consideration, we vetoed going down a big slide with an oxygen tank. Ha ha!

Higher, daddy, higher!

I think Samuel and Stefanie are friends :)

All adults smiling... babies looking in every direction :)

Everyone looking in the same direction... except me... darn!
Logistics of getting everyone there: three adults, three babies, and two cars. DB drove with George and Olivia, and I rode with Stefanie and Samuel. With Samuel's gear, we can't fit all the babies in the same car, plus, someone has to sit with Samuel as a just-in-case and to suction when necessary. Once there, with three adults it was very do-able. DB rode home with Samuel and Stefanie, then drove another car back to meet us at the park. Such great teamwork!

Sweet Olivia :)

Nothing like bagel sandwiches (and an applesauce appetizer) after the park!
Stefanie and Samuel headed home after about an hour at the park for PT... plus, Samuel was ready to get on the floor and scoot.

Other fun news - Samuel is now in a Big Boy Crib! Since he has been home he has been in a portable crib... small, but we could access him from both sides if necessary. Turns out that was a good call in the early days of coming home! But he is doing so well, and definitely growing out of that tiny little crib, so we're giving the big crib a try.

Whoa... look at all this space...

... I love it
He really did love it! So much, in fact, that he didn't sleep much that night at all... lucky us ;) But since the first night he has settled in nicely and is loving his new digs.

Hi, My Name Is

I almost feel like it's my first time blogging! I'm so excited to write, but I have no idea where to begin! Although, unlike a first-time blogger, I know how addicting this can be... but I don't mean addicting in a bad way. Sounds crazy, but this is like therapy :) Almost two months without therapy - not good. Plus, almost two months without posting photos for Mo and Do - even worse ;)

It's been a busy last two months... I just finished coaching our schools boys and girls swim teams, who rock! Last fall I thought our lives couldn't get any busier, with coaching, working, having two babies at home, and driving to Charleston every night to hang with Samuel. Well, turns out I was wrong... this year was a lot easier mentally - I wasn't as worried about losing Samuel, but physically much more difficult - with Samuel home I'm lucky to get 3-4 hours of sleep in a row, and me coaching meant DB had all three babies by himself quite a bit during practices and meets. But, I'm married to an awesome man who not only understands how great coaching is, and how much I love it, but encourages me to keep doing it and makes sure we work out the details. Plus, we have good friends who were able to help out in a pinch :) All that said, the kids rocked the state meet and both teams finished as State Runner Up!

Enough excuses for my lack of blogging - and on to the good stuff! Like most homes of 18-month olds, things change daily around here... and we get change times three. I'll save all of the medical ups and downs for the next post... and lots of other thing too... :) There is so much to share I'm just going to have to start with today... plus, it's going to take me some serious time to pare down the photos from the last two months... ha ha!

Today, Rachel and I took George and Olivia to the park! My thoughts on the way there...

- Wow, have they grown...

- I swear Olivia looks like she's 3...

- George, please don't sweat to death (some chilly weather snuck up on us and the only pants that fit around his waist and are long enough for George are completely lined - comfy, but way too warm for today)...

- I miss Samuel, I wish he could come to the park...

- I can't believe they're already 18 months old...

- It's amazing how much you can love three little people...

- Darn, I didn't bring the wagon... oh, wait, they want to walk everywhere now :)

Upon our arrival, George made sure we all understood how fascinating wood chips can be!

Olivia, on the other hand, paid special attention to the leaf blower - the "stink eye" followed the poor guy everywhere until he was finished!

I think George had fun :) He was running and laughing like crazy!

Bounce! George was doing the work, and Olivia was along for the ride, but they both loved it. Two months ago they could barely walk on this thing without falling down :)

Every time I pointed the camera in her direction, Olivia managed to stop smiling... until this... no one can run, run, run, in pink sparkly shoes and not smile!

Our inspector made sure we knew exactly what was stuck between the slats... go figure, more wood chips.

They both loved the swings :)

And of course, who doesn't love snack?!

Knock, knock!

One half smile, one half funny face :)

Smelling the flowers - I love that crinkled nose.

Smelling, and picking the flowers...

... and very upset when she couldn't put them back together :)

Samuel had a busy day too! I only caught a little piece on film, but as you can see, he's doing great!

Enjoying some outside time...

... which is even better with a giant bouncy ball!

Completely not posed! I walked in and found him reading a book! Samuel is still doing the scoot on his back thing to get where he wants to go... love that he scooted to a book :)

Also not posed... but do not love that he likes to play with his HME. It's the thing that is supposed to attach to his trache to provide the heat/moisture exchange and a place to connect his extra oxygen (see previous photo). Samuel!

Well, will you look at that... my finger fits right inside this thing!

Wait a second - my thumb fits too!

Woo Hoo! Fun, but awfully germy...

No worries NICU friends, the 5-second rule only applies to food in our house... I did replace the HME with another one and wiped his hand down :) For non-hospital folks, it would be like sticking your thumb into your nose - it's where all the yumminess goes that Samuel coughs up - yuck!

Power Outage

Almost every day something happens that might be ordinary in other houses... but in ours it feels extraordinary :) For example, preparing for an emergency... I'm not talking mandatory evacuation hurricane stuff (please, not this year!), I'm talking things like a power outage. Seems pretty simple, right? Ha ha! This week we got to practice our power outage plan - fun. No exclamation point on purpose. But now that we've had to practice, we do feel much better :)

Actually it wasn't too bad, and it gave us a good chance to practice what we should do. It happened at 6:05am on Tuesday... I was sleeping, but I'm sure that's when it happened because a few of Samuel's alarms started going off and woke me up :) The two machines that have to have power in order to stay on are the oxygen concentrator (which provides Samuel the extra oxygen he needs) and the heater on the ventilator (which makes the air Samuel breaths warm and moist - not terrible if it's off for a little bit, but if off for long periods of time Samuel runs the risk of developing a mucus plug which could entirely cut off his airway). The oxygen concentrator is the machine that alarms anytime it loses power - and it puts the fire alarm to shame. It's on 24/7 when Samuel is at home. Up we jumped! But we did pretty well... attached him to an oxygen tank in place of the concentrator and put an inline humidifier on the vent in place of the heater.

We were incredibly lucky this happened at 6am instead of 6pm, for a couple reasons. First, we were lucky because everything else charges overnight... so everything else was charged. Talk about a wake up call though - were this to happen at 6pm instead of 6am, things wouldn't have been charged so we wouldn't have had that much time to wait for the power to come back on before having to pack up and head out either to Omi's house or the local hospital, depending on the extent the power outage. Second, we have to be very careful about Samuel getting overheated. His little body gets really hot, really quickly. I think it may be partially due to his diuretic, but whatever the reason, our house has to be at 72 degrees with the ceiling fans on in order to keep that boy cool. At 6am it's much cooler than at 6pm!

Fun, fun, for everyone! George, Olivia, and Samuel had no idea anything ever happened. We were lucky and power was back on before 7am. Too funny, we had two more power "blips" today... at least we feel ready! As ready as you can be :)

Hello? Local power company? I would like to talk to your president about preventing power outages at my house...

A few moments of normalcy... more and more of them every day :)

Toe!

Tell George to smile and you get this hysterical fake smile...
but ask him to show you his teeth, and you get the cutest smile you ever did see!

Hey dad, check it out - this kid is even more handsome up close!

Accessories

Olivia loves accessories! She has enjoyed inspecting earrings and necklaces from the first day she noticed them. This time we were lucky enough to get a few memories on film :)

Home from the pool... but this boring bathrobe just isn't cutting it...

A sparkly headband and sunglasses - much better!

Thank you for the compliments Omi!

May I help you?

I think she knows how cute she is - we are in trouble!

Pose!
Yep, Olivia is workin' the cuteness :)

10 minutes later she is playing away... and I'm pretty sure Olivia forgot she even has accessories on :)

Busy!

No worries, the lack of posting does not mean a thing... other than it's been a crazy few weeks! Where to begin? I have a feeling this post is going to be all over the place, so please bear with me.

First, I think I failed to mention that George and Olivia are officially walkers! That actually happened a few weeks (or more?) ago. It is so much fun! They are practically running everywhere, especially any time we are outside and during that hour right before bedtime when they become delirious. Olivia has been able to walk for a while now, but wasn't really into it... until George started to walk. George had been trying forever, so when he picked it up, he was determined not to spend any more time crawling... and took quite a few spills, but overall rocked. Then, Olivia decided she wanted to chase George. There is no more crawling in our house!

Unless of course you count Samuel's scoot as a crawl :) He's not really moving too far yet, but he has two methods of inching along. One is in the sitting position - he has figured out how to bob up and down and use his feet to kind of pull himself forward. Hysterical! The second is on his back - he has been able to push himself around for a while now, but recently has learned how to aim. He pushes, peeks at where he wants to go, turns appropriately, and starts pushing again. Smart kiddo. Although he has gotten himself into some interesting predicaments.

We have also had quite a few adventures lately. Some involved road trips, others doctors appointments (pulmonology and neurology but no news to report), others playing in the fountains - and trying not to end up face down - at the pool, others learning new games that all three babies can play together, and then there is losing a gtube. Yes, really. Samuel's gtube fell out. Sorry buddy, but ew! We will come back to the other adventures later...

On Wednesday, the gtube almost fell out. Luckily Stefanie, Samuel's nurse, was at our house because it's been a while since I've had gtube 101. She deflated the gtube balloon of its remaining 1mL of saline, pushed the gtube back in, and put the 1mL back in the balloon. (The inflated balloon is inside Samuel and is what keeps the gtube in place.) Off Samuel and I went to the doctor - all appeared okay. YEA! Until Friday, when I got a call from Stefanie that it had completely fallen out. On my way! Once again I was lucky that Stefanie was there - she was able to put a foley catheter in place of the gtube and tape it in a way that would keep it in place and keep the hole open. We packed up and headed to our local ER to have it replaced. Luckily the stomach is considered "dirty," so we didn't have to be too worried about an infection. (DB was at the grocery store with G and O... he came home to an empty house just a little worried :) )

About 2 1/2 hours later, after numerous calls to everywhere within an hour of our local hospital, we got the news that no one had a replacement gtube for Samuel. Ugh. While thankful for all of the work put into looking for one, we were also not excited that it was now almost 2pm and we were headed to back to our old stomping ground, Charleston. Then again, we are very comfortable with the drive :) Ha ha! Actually, kind of sad ;) But without a gtube, no food and no meds. Once there, we got a new gtube, some advice on a nutritionist (totally different subject, but YEA!), and back home by 7:30 in time to kiss G and O goodnight. Turns out the old gtube had a slow leak, which is fairly common after it's been in a few months. Something to keep in mind I suppose.

Got your nose!

Hairdo by dad :) Exhuausted after a swim, but still a cutie.

We are working on only getting into one cabinet, instead of all of them. Who knew she would take that so literally?!

Our little fashionista! If it's not accessories, it's four dresses at one time :)

The Samuel back-scoot... here's a hint, follow the oxygen tubing :) Need another hint? I'm pretty sure you can't watch TV from underneath!

Another Samuel back-scoot... this time he hit his target instead of going under it!