Wednesday, June 29, 2011

Just Love!

This week there was only love :)  On Monday, Samuel had his first real therapy session at the same PT place I mentioned in the last post... and in addition to the walker, he also got to try a special bicycle!  It has straps to hold in his feet, foot and hand pedals, and helps with mapping the motion of walking.  George has ridden this bike before too, but when I saw Samuel on that bike today I almost cried.  Today, it was only feelings of pure joy!  Not only did he love it, he looked like such a bit boy.  Woo Hoo!

Again, I wish he had the smile to show his enthusiasm :)  Samuel loved this bike! 
In fact, when it was time to get off, he wouldn't.  Go Samuel!

I also want to pass along thanks to Debbie, who has been George's PT since mid November.  She is moving away at the end of the month, so today was George's last session with her.  He will still have PT, but will start with a new therapist next week.  We are sad to see her go!  But, we have big plans to reunite in the future, we're positive that George and her baby girl will hit it off  :)  Ha ha!

Since I'm on the subject, I also have two other therapy thanks to give... one is really old, and the other is new.  The first is to Hannah, who was George and Olivia's Speech Therapist from July '10 - February '11.  She was wonderful!  I think graduation from speech came closely after the pronunciations of "prone stander" and "pulmozyme" :) 

Photo from February :)

The second is very recent, to Monte, who was Samuel's home PT from July '10 - June '11.  In this time period Samuel has gone from stuck on his back, to crawling, and now to cruising.  YEA!
This photo also from February :)

Finally, a big kudos to my beautiful Olivia, who attends all therapies but doesn't get to play with the stuff :)  Poor kid.  Although, she does love her alone time with mommy, or daddy, or Rachel, in the waiting room!  Such a trooper!

Sunday, June 26, 2011

Love/Hate, Part 2

First, I just need to say that I'm so thankful for Part 2's!  We are truckin' right along and the kiddos have gotten stronger every day... who knew things could be so good :)

The first Love/Hate post was regarding Samuel's special stroller... okay, fine, wheelchair.  Wow has it been wonderful for us!  Not only was it helpful for short trips, but it was the reason we could venture out of the hospital during all of Samuel's recent stays.  It's comfortable, durable, and holds all of his accessories, including pulse ox, feeding pump, and oxygen tank, among others.  I'm convinced going outside kept us sane during those stays!  Thank you Chair :)

Kind of a humorous side note, but I'm pretty sure Samuel got more "poor kid" looks for the eye patch than for the oxygen or the Chair!

This post is also about equipment that I am so excited about, but also kind of breaks my heart just a little bit.  Last Thursday Samuel tried out his first walker.  I've been a range of emotions, from "who knew they made walkers for 2-year olds?"  To, "seriously, hasn't he had enough, he really needs a walker?"  To, "wow, my boy has come so far I can't believe he's walking!"

Just to throw it out there, there is no need to tell me how far Samuel has come... I know :)  His life is a miracle, much less every single thing he is able to do!  I know he is incredible!  Nothing could take away from my feelings of incredible joy at all my baby is accomplishing.  But, it's still tough to swallow sometimes that your baby can't just get up and walk like other kids... it's going to take longer, again.

These feelings aren't for my pain - at least I don't think they are - but because I want something to be easy for Samuel.  Everything takes work, and strategies, and even equipment.  Yes, I'm thankful for all of those things!  But there's something about seeing your baby in a walker that makes your eyes well up because it just doesn't seem fair.  I know, pity party.  The good news is that the pity party doesn't last long at all because the joy of seeing Samuel walking FAR outweighs any of that!

After writing all this, I'm finding myself in the same place I did with the Chair... I hate that Samuel needs it, but I love that it's available to him and all that it will allow him to do! 

This original walker I'm mentioning was a quick trial at our initial evaluation for our new physical therapist.  Yes, NEW!  The reason this is exciting?  It's a clinic... like, not in the home... like, the docs feel he is healthy enough to try an out of home therapist!  Our other therapies will remain in-home, but for PT this is a new adventure for us.  Also, Samuel is doing so well with PT that it's time to get him somewhere that can offer him equipment... not only the walker, but also special bikes, a ball pit, a swing room, and so much more.  I can't believe he's ready for this - HOORAY!

He really did like it!  Wish he had a smile to show it :) 
Samuel was completely intrigued with the walker, the new location,
and all of the other amazingly cool therapy things all over the place.

Thursday, June 23, 2011

Weekend at Home

This past one was our first weekend home with the new aortic valve... we haven't officially named her yet, we're leaning towards Anita (starts with an A and seems like she could kick some tail if necessary) or Clicka (self explanatory once you've heart DB's new mechanical heartbeat, and rhymes with Pippa).  All we know is that it's female... in our family that seems to be the healthiest way to go :)  Ha ha!  Not really funny, but kinda :)

Here's a picture of a general St. Jude's mechanical heart valve... pretty amazing!

Anyway, overall we had a good weekend!  First, Uncle Jay, Cousin Madison, and Linda all came to visit Wednesday - Saturday... not only was it great to see them, they were also a huge help at the house.  From helping with babies to washing dishes to doing yard work and making the weekly trip to the dump, it was just awesome to have them here.  Plus, their smiling faces are always welcome additions to our days :)

Then "aunt" Brooke came in town Friday - Sunday, and again, the helping continued!  And of course, so did the fun... I just love that girl.  And so do my children and my husband - I'm so lucky!  DB even suggested that Brooke, Kristen, and I all go grab a margarita one night, so after the kids went down our sitter, Laura, came to stay with DB just in case the kiddos needed anything while we went... it was really nice to be hangin' with the girls.

This weekend was also a tough one... I won't talk about it too much because it's not my news to share, and to be honest it still hurts a lot, but we attended the memorial service for our boss, the headmaster at our school.  Dr. Wall was the healthiest man you ever knew and, at the age of 59, very unexpectedly passed away due to complications from Leukemia.  It has shaken us.  The services were a wonderful testimony to his life, but it still seems surreal to say goodbye.  He is missed, a lot... he was a great leader and friend.

Of course, when Brooke comes in town, there are always lots of great photos to share!  The photos in the last post were just the beginning, below is a bit of that Sunday...

Happy Fathers Day, Daddy!

Unfortunately, no wabooshkie this Fathers Day...
but we still had fun :)

Pretty sure George had the upper hand the first go-around...

... but Olivia came back for more!

Neither of them look too terribly upset about the whole thing :)

Samuel, whatcha doin'...

... having a great time!

This kid loves to look at things from EVERY angle,
I just can't believe we finally caught some proof on film!

Notice the guilty look?  If you've been to our house lately,
you have definitely heard, "Samuel, not in your mouth!"  He knows!
(We do this because it helps Samuel learn to play with toys.  His first instinct is just to stick stuff in his mouth, but once you get him to take it out, he actually starts to play with the toy.  The more he has practiced, the better he has become at learning what his toys do!)

Dueling smiles...

No offense DB, but I think Olivia won :)

Daddy's little girl :)

George, just like Samuel, loves to throw the ball for the dogs.

Go Scout!  I think Belle already got a head start, sneaky little girl.

Wednesday, June 22, 2011

Things To Remember, Part 2

It's been about three months since my last "in general" post... plus, at this point there seems to be lots of little updates about lots of things, so this may be the easiest :)  Where to begin...

DB is doing really well!  It's been nearly two weeks since his surgery, and more than a week since we came home from the hospital.  Home is SO good!!!  I think the toughest part is that DB feels great mentally (he's almost off all of the hardcore pain meds and just on tylenol), but can't do much physically.  He has started going for short walks, is able to get in and out of chairs by himself, and is helping out where he can with the kiddos - they love reading books with daddy!  But it will be weeks before he can drive a car by himself, or even the lawnmower, and even longer before he can lift 10 pounds or more... I think he's going a little stir crazy having to sit so much and feeling tired, but he's able to be good because the pain is still pretty intense if he breaks the recovery rules.  DB sneezed for the first time today, which was unbelievably painful, but he also got the energy to ride in the car and do a few errands with me, Olivia, and George.

BB's summer schedule still includes working part-time, but summer also means it's preseason!  The school swim team I coach started preseason practices the last day of May and will be two days a week until the end of July when the regular season begins.  Once again my assistant coaches have already proven to be lifesavers, not only with general practices, but also by taking over on the days I could not attend last week.  I love coaching!  And I love the crew of swimmers and coaches I get to work with!

Olivia is a trip!  We call her our narrator... our play-by-play commentator... of everything.  Some favorites are the adjectives she uses for clothing, or should I say "outfits."  They are generally "too cute" or "so pretty," whether it's a dress, a boys shirt, or even a sock :)  Olivia also loves to wear ponytails and bows!  Of course, she also loves to keep track of what everyone is doing, frequently running to tell daddy or mommy about the actions of George, Samuel, and her favorites dolls.  Olivia loves to dance, loves to eat, loves to play soccer, and she loves to laugh!

George keeps us laughing!  That boy loves trucks, cars, and books... he could live on those three topics all day, every day.  George also loves to be tickled, and he laughs with this uncontrollable pure laugh that lights up the room!  He is an expert at puzzles, knows every book in our house by name, and has an incredible memory and recollection for details..  He loves to run through the house squealing with delight at the joy of running!  George is still in PT for a weak core and his left foot has started to turn in just a bit, although his custom-made orthotics seem to be helping a lot.

Olivia and George can also sing the words to most children's songs, know their ABC's, count to 10, and have at least five jokes up their sleeves.  They amaze us daily!  They recognize the letters G, O, S, M, and D everywhere, love to color, and like nothing more than to be outside swinging or playing in the water.  They're also learning to share and take turns, with only a few trips to time out along the way :)

Samuel is still impressing us more and more everyday, if it's possible!  He is not only pulling to stand with ease, but is now cruising... literally, anywhere there is a ledge, a wall, or a leg, that boy is standing and walking!  He can practically walk when you're holding just one of his hands.  Samuel wears leg braces, hinged AFO's, that help him with leg/hip/knee/ankle strength and positioning.  He is also signing more and more, including to make choices!  We started using picture cards to represent some of his favorite people, toys, and songs, and he is really getting it.  Even though it's not in language that you or I would typically use, he can very clearly tell you which song he wants to sing with a few sounds and hand gestures... and believe me, he will also tell you if you get it wrong :)  This is incredible!!!  Samuel spent so long not wanting anything or expressing himself... this "normal baby" this is so exciting for us, and for him!  Imagine figuring out you can ask for things... and then how to communicate them!

Samuel is still the happiest boy you've ever met :)  He loves to bounce on the couch, seesaw to Row Your Boat, swing, play with pine straw, play peek-a-boo, and of course love on Beelow and Lady.  Samuel still drinks water from his cup,  but has gone a little backward on the eating.  He was doing great, and then sometime mid-April (pretty sure it was the 16th) he just stopped being interested... we still work on it every day, and in the last few days he seems to be expressing a bit of interest again.  Fingers crossed - this is a huge mountain for him to climb!  Samuel still wears his eye patch and hour per day, but his vision is great... which he proves by his sprinting crawls to his favorite toys.

Wow, still feel like there's so much to say!  Our family changes daily, thankfully :)  At the same time, I wish I could freeze this time in our lives (except for DB - I want a speedy recovery for him!) because it is just so awesome.  I love my family!

Hard at Play! 
Of course there's Olivia in the front, but I love that Samuel is taking it all in, and of course George's hair is priceless :)

Hard at Work! 
I've mentioned it before, we take love our sidewalk chalk!

The dogs are right in the middle of all our outside play... sometimes literally EXACTLY in the middle :)

Wednesday, June 15, 2011

Welcome Home New Ticker!

DB's new aortic valve has officially moved into her new home!  YEA!  We got to come home yesterday afternoon... and it is AMAZING!!!!

Will add to this post later tonight, but wanted to share the good news :)

Monday, June 13, 2011

Going Home... But Not Today

DB continues to do well after his surgery!  Since I last wrote, he has settled into his non-ICU room quite nicely, and so have I.  In particular, I like that I can stay and don't have to leave him here alone at night.  We haven't had this much time together in ages!  Ha ha!

In addition, DB's pain is being managed nicely, all of his accessories are gone, and he is moving around a bit - YEA!  The pain is getting much better.  It still hurts, and will for a while, but he is on a good regimen that's keeping him comfortable. 

While he has to be attached to monitors until being discharged, all of his other lines are gone!  Last IV came out yesterday, as well as the chest drainage tube.  The IV was straight forward, but the chest tube was fascinating!  Well, fascinating for me :)  For DB it was a bit painful.  Another bonus about these lines being out, is the reduced chance of infection - this is huge! 

In addition, DB is moving around much better.  It's incredibly hard to get used to not using your arms for anything... for example it's like doing squats every time you stand up or sitting down.  Also, just moving is a bit difficult, but DB is working hard and increasing his laps... he claims it's the beginning of his training :)  Plus, once all the lines were out, we got to go sit outside and soak up some sunshine for about 30 minutes - loved it.

Only one set-back from our original/ideal plan... we can't go home today.  I mentioned DB has started taking coumadin, and the next step is for that coumadin to raise DB's INR to approximately 2.5.  That number in someone not taking blood thinners is around 1.  INR (International Normalized. Ratio) measures the time it takes for blood to clot and compares it to an average.  Coumadin is a blood thinner, so DB needs to find the right dose that will both thin his blood for the new mechanical valve (helping to avoid blood clots) but also keep it thick enough for the blood to clot if necessary (for example a cut or bruise).

At this point, there's a 50% chance we can come home tomorrow.  All I'm saying is the glass is half full!

Things on the home front are going well, from what I hear :)  I'm so thankful for that!  One of the hardest parts about staying at the hospital is missing the kiddos... actually, probably the hardest part.  Makes me teary.  Boo.  But again, they're happy and surrounded by people who care about them!  Plus, all the help we have allows me to stay with DB, and from what he says, I've been helpful here :)

Friday, June 10, 2011

New Valve... Check!

DB did amazing!!!  Yesterday's aortic valve replacement is over!  Now comes the recovery... not fun, but do-able :)

The surgery went really well!  We arrived at the hospital at 5:15am (after 5 hours of pre-op the day before), and by 6:30 they were wheeling him back, already on some versed so his nerves were calmed.  The night before and that morning were a different story, so I was glad to see him getting into a better place... too bad they didn't have any extra lying around for me.  (Hanging with our friends Sarah and Bo the night before the surgery was a wonderful distraction, and even though we probably weren't very good company, they never let on :) )  Surgery started at 7ish and the surgeon came to give me the good news a little after 10 - I was elated!  So much so that I actually hugged him... oops.  He handled it very well :)

Part of the good news was the reassurance about the urgency and importance of replacing DB's aortic valve!  The surgeon said is looked absolutely terrible.  I mentioned this before... even though the numbers all showed he needed to have the replacement NOW, it's hard to go into surgery not feeling "sick."  So hearing that the valve was really, really bad was actually a good thing :)

It was nearly noon by the time I got to see DB, after they sewed him back together and got the post-op accessories situated, and the sight of him brought me to tears!  An added bonus was that he actually looked really good, not all puffed up like I was expecting.  Lots of tubes and wires coming out everywhere, but luckily Samuel prepared me for most of that :)  The post-op goal for yesterday was to get extubated (get the breathing tube out), and DB accomplished it around 1pm, which is incredible!  The remainder of the day was spent trying to get comfortable, which has still proved to be nearly impossible, and managing meds, vitals, and lots of other heart stuff.

Today has been a lot more painful than yesterday.  DB has accomplished more post-op goals as well, so there is a bright side, but the pain has been pretty bad.  The surgeon has explained that while being young and healthy will make DB's recovery quicker, it actually makes the surgery much more painful.  Being young means your muscles and nerves are still very dense and strong, so when they get pulled apart to access the heart, the damage is much more painful.  We started a new med and a new med routine mid-morning which seems to be helping a lot!

Also this morning came a few other post-op goals... he started coumadin, the pacemaker wires came out of his chest, the central line came out, and the massive neck iv's came out.  The neck lines were crazy!  They were in place to measure the pressures in DB's heart... one was literally 12 inches long (inside his chest), and the other was about six inches and the circumference of a small pencil.  Ugh!  Almost crazier is that DB had no idea they were even in, and it didn't hurt to take them out!  Getting rid of all this stuff decreases risk for infection, which is awesome.  He still has one small iv and of course the chest drainage tube.

DB also came out of ICU!!!  This is great!  I suppose reasons are obvious :)

From DB: "Ouch."

I can tell he is starting to feel better as his sense of humor has begun to return :)  Thank you for your thoughts and prayers!  Infection control and pain management are two goals right now, leading up to the goal of going home (we're shooting for Monday).  Go DB!

Monday, June 6, 2011

DB's Heart

June 9th is just around the corner... part of me feels like it took an excruciatingly long time to get here, and part of me feels like it's here way too soon.  But, the months and months of waiting are over, and it's time for DB's aortic valve replacement surgery.  Yep, open heart surgery.  Not on one of the babies, but on my husband.

For lack of a better term, shoot me.  Well, actually shoot DB, he's the one who has to go through the surgery.  He was also the one at the doctor eight months ago when they said, "It's time."  Immediate response from both of us, besides shock, was "no, thank you."  Unfortunately, that didn't fly.  But, because he was asymptomatic (for example, he wasn't passing out on a regular basis), he could wait.  The cardiologist reassessed in the spring, and again decided that because he still wasn't having symptoms, he could wait until school was out.  Of course, this waiting stuff all hinged on staying symptom free.  If DB fainted, then the surgery would be right away.  Gee, thanks.  Not only am I terrified every time he doesn't answer his phone that he's fainted, but you just told DB he's going to have serious heart surgery in eight months... that is entirely too long to think about it.

So, June 9th is almost here.  And no, there's no chance the doctor is going to say we can wait longer.  DB's numbers back in October were horrendous... for example an aortic artery that is 90% blocked, and an aortic value with a circumference of .88 rather than 3.  The only reason we could wait is because he was asymptomatic.  Honestly, with the state Samuel was in last fall, thank goodness for miracles (that may not seem like miracles) like this extra time.  The kiddos are in a good place, and we can really focus on getting DB healthy!

If you couldn't tell, I'm not looking forward to June 9th.  I know DB will be okay, I just hate that he has to go through this.  He holds me up, he is my humor, and he is where I can go to be frustrated, sad, happy, and joyous... I don't want him to have to be in pain.  I just wish he could be okay without needing this surgery.  Of course, again with the thanks, thank goodness this surgery is available and we love our hospital :)

On a lighter note, DB is convinced that within a year he will be able to beat me in a run around our neighborhood, and has big plans for his new aorta!  As a comparison, DB hasn't been able to run more than a block in a really long time (if ever) without getting completely winded.  Unfortunately for him, he hasn't taken into account that no matter how out of shape I may be, I'm one competitive girl :)

We are at the hospital most of Wednesday for pre-op and have to stay near the hospital on Wednesday night.  Surgery is scheduled for 7am on Thursday.  We will definitely try to keep you updated through the blog :)

Sunday, June 5, 2011

The Real Thing

I mentioned our water table in an old post, and how the photos weren't exactly accurate about how much fun there really is to be had when playing with one.  The photos below do a much better job :)

Soaked to the bone, and loving it!

In case George's hair has gone unoticed, Olivia wasn't the only one dousing themselves in water :)

Fun, fun, for everyone... 

... even though he had managed to run away from the table by the time I got the camera out, Samuel enjoyed a nice cup of water down the shirt too!

Friday, June 3, 2011

The Girls and The Boys

I have to back up a little bit... okay, a LOT.  With all of the birthday fun, then exciting medical stuff, then March of Dimes, then more medical, then Easter, then more medical... whew.  I have to back up to a very special weekend. The weekend of February 12th and 13th!  Most importantly, it was a celebration of my grandfathers life. Second, it was the first time any of my children have met a great-grandparent. Third, it was also the first weekend DB and I have split up, besides hospital trips, and had time with just one or two of them... Olivia and BB flew out to AZ and George, Samuel, and DB had a boys weekend at home.  Fourth, I got to see my high school BFF and her wonderfully beautiful pregnant belly :)

Grandad Biaett, I love you!  Grandad was such a great man, and it was wonderful to be able to spend time with family celebrating his life. There were tears at the service, but there were also smiles as the story-telling began. One of the consistent themes from his children and grandchildren was his unwavering support of each of us as individuals, and believe me, we are all very much individuals :)  He loved each of us so much. Grandad was also hysterical and had many quotable moments, which was also solidified as people told great stories about his life.  He loved being around family and friends, any chance to celebrate, and kids.  My biggest heavy-heart moment came when Olivia walked right up to the biggest picture of Grandad and I swear she looked at it as though she knew him... even though this was the first time she ever got to meet him.  It was a moment that will be forever etched in my memory.  Even though I know it wasn't possible, and that one day they will meet him face-to-face, I am sad that my kids didn't get to meet their great-Grandad here on Earth.

Olivia and I left the house at 4:30am... she was such an amazing travel buddy!

She made sure Cookie Monster got a prime view of the tarmac :)

Dinosaur too!  And yes, these were her two main travel buddies :)

Peanuts for everyone!

After a flight to ATL and then to PHX, Olivia took a quick snooze at Mo and Do's before I had to wake her up to head to the memorial service.  I'm telling you, she was incredible!  From there we headed to a reception.  Did I mention there was a 2-hour time difference not in our favor?!  This little girl did so well.  Of course, the moment she chose to warmup and speak a little bit was when we went up to say a few words about Grandad :) 

Due to medical circumstances and restrictions over the last year, we have not traveled home to see my family before this weekend.  In one incredible swoop, Olivia met ALL of my cousins, aunts, and uncles (both my fathers family and my mothers family came which was just awesome), and lots of other family.  It was so wonderful to see everyone!

Some of my dad's side above... it was amazing how many people were able to make the service!
My mom's side in multiple pictures below...  

Above: Mo, Do, brother Aaron (in from Colorado); Cousins Galadriel (in from California), Lorienne (in from North Carolina), Tyler (in from Boston), and Robert (in from Texas); Aunt Marta and Michael (in from Washington); Aunt Silvia;  Cousin Bob.

Cousin Katrina (in from Washington)

Cousin Micah (in from Peyson), cousin Josh (1st baby due soon!), and brother Aaron

Cousin Jared (recently back from China), brother Aaron, and cousin Micah

Aunt Mary Jane and Uncle Bruce (and brother Aaron :) )

The next day was followed with an incredible visit to my Granny and Grampa!  Grampa, at 97, continues to amaze us all! 

Looking at photos of all three kiddos :)

A few more things I will never forget, one of which was the comfort that Olivia displayed when meeting her great-Granny and great-Grampa.  She is generally a nervous little girl when it comes to new people, but she must have felt the love in the room because she was reading and high-fiving and even sang to Granny.
I will also never forget the look on Grandpa's face... he couldn't take his eyes off of Olivia :)  It was absolutely heart warming.  And even though Granny is in the advanced stages of Alzheimer's, and was unable to open her eyes, she smiled a mile-wide when Olivia sang Jesus Loves Me and ABC's and hugged her.  I have to admit, I left with a full heart but also a bit heavy that I'm not able to see them more often.

In whirlwind fashion, we left Granny and Grandpa to head to brunch with extended family and then it was back to the airport.  Whew!

Thank you PHX airport for this kid area!

After this photo Olivia passed out... for the entire 4-hour flight.  Good thing too, there were NO open seats on this flight so she was on my lap the entire time... which isn't too bad with a sleeping, snugly little girl :)

We arrived in ATL that night and headed to hang with some of my girls for the evening - loved it!  Especially the part about seeing my Kirby preggers!  Our current living arrangements - on opposite sides of the country - don't allow for too many visits so I was extremely happy to see and hug her and Baby Girl!  (Since this post is ridiculously overdue, Kirby has since given birth to beautiful Walker Emeline on April 24th!) 

After brunch it was back on the plane to head home... whew.  If you're wondering why there are no photos of DB or the boys from home, apparently what happens when mom is out of town is only for the boys to know :)

One piece of ridiculously disgusting info from the weekend that I just have to share... while my family was at the memorial service, my parents house was targeted by burglars.  Hard to believe people can be so terrible.  They didn't trash the house or take any of the electronics or appliances, but they did take something maybe even worse... all of my parents jewelry, including all of the family jewelry - wedding rings included.  It still makes me sick to my stomach.  The necklace I'm wearing in the photos from the service may be the only thing they have left.  The other hard part is that after returning from an evening of reminiscing and smiling about my Grandad, this was what we came home to.  My dad said goodbye to his dad only to be greeted by home invasion.  Nausiating.