30 December 2009

Pictures: 3 Months Old

Today Bennett turns 3 months old!

It's hard to believe he is a fourth of the way through his first year of life! 

 *this picture was taken by our new friend, Wendy
Bennett has been such a joy in our life.  We are still getting to know him as Bennett has spent two-thirds of his life so far in the hospital.

The three things we love most about Bennett at this point are:
1.) the way he loves to be cuddled
2.) his big navy blue eyes against his fair skin
3.) his toothless smile, when he chooses to share it with us

29 December 2009

Breck's Thoughts: A Family Christmas

We have really enjoyed being with family* this Christmas.  There have been a lot of good laughs shared and good food eaten.  I have appreciated all the extra love given to our two boys by aunts and uncles as well as grandparents.  I've even been able to sleep in a few times which was glorious!

But one of the most touching moments for me this Christmas was a family viewing of the CF Foundation documentary "Expanding the Horizons of Hope: An overview of 50 years of progress in CF research and care and the challenges that still lie ahead."

It's strange to think that this was one of my most memorable moments of Christmas 2009.  But I will never forget the 60 minutes shared while watching that video.

At one point into the documentary, I took a mental snapshot.  With Bennett in my arms, I watched on as my large family sat in the dark room, the glow of the TV on their faces, listening to the narrator tell the story of Cystic Fibrosis.  No one moved, not even little Oliver, who was cuddled next to Aunt Brook.  The video began by explaining what it's like to have CF and then went on to describe in detail how CF affects the body.

My eyes began to swell with tears as I realized what was happening.  In that moment, my family was being melded together by their love for the newest family member...but also by the reality that this genetic disease affects us all.  Two family members still have not been tested.  Will they likely face CF in their own childrens' lives one day?

This video was giving my family insight into just a small part of what it will be like to raise Bennett.  My heart hurt as I realized that the information my family was learning at that moment would be the groundwork for what will come up years from now - questions and curiosity over his care that will one day arise around the dinner table.  I began daydreaming what it will be like to have future conversations where family members will ask follow up questions regarding information they first learned in this video. 

I knew this moment would not be an isolated event.  This would be just the beginning.  Our family viewing of this video was a hazing, of sorts, into a life none of us ever expected to have as the extended family of little Bennett Gamel.

My tears were for the realization that this isn't what "normal" families do at Christmas gatherings.  Our CF experience will continue to establish a new normal for our lives.  But the awareness of that new normal continues to surprise me.

But I think my tears were for something much deeper, much scarier.  As I listened to my thoughts, I began to realize that my tears were grief.  Would these people - the ones scattered throughout couches in this dark room - be the same people gathered together one day facing Bennett's funeral?

The video was over.  Everyone began stretching.  The lights had not been turned on yet.  With Bennett fast asleep in one hand, I used my other to eject the DVD from the player.  My tears could no longer stay private as I tried to articulate my appreciation to my family:

Thank you for humoring us by sitting through this not-so-action-packed-CF Foundation-video.  Thank you for caring enough about little Bennett to listen to what our lives are going to be like for the rest of Bennett's life.  But most importantly, thank you for being our family - we know it is likely to be a lonely road ahead and it's good to know you guys will come along beside us.

(*We missed being with Brian's family but look forward to our "Christmas in March" with them in a few months.)

28 December 2009

An attempt at a Christmas family picture.

This weekend, we had a friend take pictures of our family.  It was too cold to bring Bennett out of the blanket and Mr. Oliver was in one of his goofy moods.  No amount of candy or bribing would get him to look at the camera at this point.  So, our friend decided to just take a few candid shots of our family.


Oliver has yet to master saying "cheese" while also looking in the camera.

25 December 2009

Christmas 2009

 Merry Christmas
from The Gamels

*We would have loved to have gotten a better family picture.  However, considering our recent family events, this was as good as we were able to get.  :)

24 December 2009

Baby Elves

One of the things we are enjoying about having another son born in the same season as his big brother is seeing how each of the boys were growing during parts of the year.  It's pretty obvious to see their weight difference, especially since Bennett is 1 month ahead of where Oliver was in these pictures.  But it's most interesting to see how they still favor each other.

Bennett - 2009 - almost 3 months old

Oliver - 2007 - almost 2 months old

Close Up of Bennett - 2009 - almost 3 months old

Close Up of Oliver - 2009 - almost 2 months old

Merry Christmas!

We have so much to be thankful for this Christmas season...such as watching Oliver and Bennett visit Santa Claus for the first time.
(click the picture to enlarge)

22 December 2009

Home for the Holidays

We are all together again.  We have now joined Oliver in Louisiana where we will stay for Christmas.  It is nice to be together again.  We feel (and certainly hope) that most of our CF battles are behind us for now.  The only two things we will be focused on now is keeping Bennett's lungs healthy and getting him to up to the 50th percentile in weight.

Bennett has a follow up appointment with the surgeon and his CF team in three weeks.  Bennett is doing well overall but continues to struggle handling the amount of food he needs to survive.  Things were going fairly well before the surgery so we believe this setback is directly related to his abdmoninal surgery. Bennett's colon, like his small intestines, are likely underdeveloped (understandable as his colon has never been used).  This makes it very easy for him to be overloaded during his feeds.

So, we are working on getting him back to feeding at his original capacity.  Hopefully, it won't take too long.  When he is not hurting, he is smiling and cooing.  We hope to catch it on video soon!

20 December 2009

Humpty Dumpty Surgery Pictures - Day 5

We're packed up and ready to go home!

Guess who didn't bother to help us pack?  Lazy Mr. Bennett.

Bennett's beautiful chest!  The tape on his stitches should fall out in one week.  Bennett's G-tube is surrounded by gauze to keep it clean.  (Bennett isn't a happy camper - he's hungry.)

Little guy sits up and talks to us.

Instead of wearing a hospital gown when he's at the hospital, Bennett has to wear a Cook Children's Hospital t-shirt.  He's growing up so fast!

Humpty Dumpty Surgery Update: Day 5 12:10pm

Bennett has fully recovered and we are being discharged today!  The doctor recommends waiting an entire week to put him on his tummy.  So we will begin better implementing tummy time starting next week.

We have been instructed to continue to use "Baby Butt Paste" on his bottom - this stuff is like the thickest lotion you could ever find.  It will help Bennett's skin make the oils needed to protect his bottom when he has a dirty diaper.

Bennett's stitches will dissolve so we don't have to worry about coming back to the hospital to take them out.  It looks like everything is healing well.  He will have a beautiful battle wound to tell his friends about.

Bennett will continue to keep his G-button for now but it should not impede him much.  He still uses it every feeding (he won't take more at a time than about 1/3rd what he needs to eat).  So, the G-button will be in there for quite some time.   However, other that, you can't tell there is anything wrong with Bennett - which is great!

We are *so* happy to have gotten to this point.  It has been a crazy 2.5 months but we are so glad to feel like we are now finally going to plateau out on our excitement for some least we hope.

Bennett is certainly a blessing, one whom we love very much.  We are so thankful God has given us so much time with our little one - something we didn't know would happen after his birth.

God is good.  We are going home!
(With no plans to come back!) :)

19 December 2009

Humpty Dumpty Surgery Update: Day 4

Bennett is now at 60ml (just 30ml/1oz away from what he normally takes).  He is doing great. He's pooping and pooting just like any other baby!

Bennett will be eating 90ml later tonight so, it turns out, we may be going home tomorrow!!

Humpty Dumpty Surgery Pictures - Day 3

 Bright-eyed and glowing.

 Bennett demonstrates the newest version of wristbands: the Oxymeter2000
An oxymeter uses two sensors to measure the amount of oxygen the blood.  It sends infrared signals through the skin from one sensor on the top of the wrist to another sensor on the bottom of the wrist.

Giraffe talks to Bennett and tells him he will eat soon.

Bennett looks out pondering all of the wonderful exciting things he will do when he's out of this hospital.

 Bennett's Crib

Breck talks to Oliver over the phone.

Feeling better after having gotten to eat.

Brian and Bennett watch Seinfield.

Bennett snuggled in Daddy's arms.

18 December 2009

Humpty Dumpty Surgery Update: Day 3 - 3:59pm

Bennett pooped!  And it was great!  We took pictures - although, we're not sure anybody wants to see them...or if they'll take us to jail even if people did!   So, we'll keep those for his baby book.

Nonetheless, we are breathing a sigh of relief - his insides are working correctly!

Now, it's on to recovery...

Humpty Dumpty Surgery Update: Day 3 - 9:20am

We finally got the go ahead on fluids this morning.  Bennett sucked down his one ounce of Pedialyte in 3 minutes flat.  Poor guy is hungry.

The plan is to give him 1 oz of Pedialyte at 9am, 12pm and 3pm.

If he handles those well (no vomiting and good poops), we will try 1 oz of formula at the 6pm feed.  Then, every three hours, we will begin increasing his formula by 15ml until he is back to his regular 3oz.

All is well as of now.  We expect that within 24 hours or so, he should be eating his normal amount.

Our prayer is his feedings will go smoothly.  If they do, we may be out of here by Monday!

17 December 2009

Humpty Dumpty Surgery Update: Day 2 - 6:19pm

It turns out that the doctor feels like starting fluids at 7am tomorrow is best.  So, no feeding tonight.  :(  (We were really disappointed at first but then learned that so it's in Bennett's best benefit to wait for the bowels to wake up as long as we can before we feed him.  It can be very very painful if we feed him too early.  So, the doc is trying to be on the safe side).

Fortunately, Bennett is sleeping soundly.  His pain has lessened so he's sleeping much more peacefully.  He seems to be using all of his energy just to heal right now.

We are looking forward to tomorrow and pray his body will be best able to handle fluids then.

Humpty Dumpty Surgery Update - Day 2 1:26pm

We heard a poot!  Hooray!  We heard a few big poots and can hear bowel sounds!  This is great!

Hopefully we will be able to start feeding him Pedialyte soon!  We are waiting for the Pediatric Surgeon Physician's Assistant to get out of surgery to come up and confirm.  If he sees all is well, we will start with Pedialyte soon!

All the kings horses and all the kings men...

...Did put Humpty together again!



Humpty Dumpty Surgery Update: Day 2 - 8:17am

Things are going as expected so far.  Bennett has mainly been sleeping since his surgery yesterday morning.  He's fairly content on pain medication but really cries out when the morphine and tylenol wears off.  We can tell Bennett is hungry.

Dr. Hamner stopped by this morning.  He said everything looks good.  He said we are waiting to hear bowel sounds.  As soon as we start to hear bowel sounds and gas passing out (yes, a fart), we will know things are starting to work.

Dr. Hamner said the body has to wake itself up.  Usually the anesthesia puts the entire body to sleep.  So, hopefully the body will begin to wake up and start moving like it should.  When we begin refeeding Bennett, we will start with fluids first.  Then, small amounts of formula.

We hope to begin fluids by this time tomorrow.  Right now, we're just listening for farts. :)

16 December 2009

Humpty Dumpty Surgery Pictures - Day 1

Here are pictures of our day today:

Bennett is prepped for surgery.

Our friends entertain us in the surgical waiting room during the course of the two-hour surgery.

Oliver entertains himself on the floor with a truck.

A Disney movie keeps the boys attention for part of the time.

Lilli keeps everyone's attention most of the time.

We eat lunch in the room. (Yes, Sir-Eats-Alot.  Although, Breck swears for the last time.)

We visit the playroom on the surgery floor.  The kids loved it.

...especially the big fish tank!

We visited with the therapy dogs who came to visit the patients in the Atrium of the hospital.

Isabelle, the dog, was very kind to the kids.

Each of the kids got to brush the dog with special baby brushes.  They really enjoyed being able to do that.

Bennett was finally brought to the room after surgery where he rested.  (He is on a heart monitor and IV fluids).

And, finally, it was time to say goodbye.  Thank you, Lindsay and Josh, for getting up at 5am to be here with us all day!

Humpty Dumpty Surgery Update: Day 1 - 5:10pm

Bennett continues to sleep well.  He hasn't hardly moved, open his eyes or shown much interest in anything other than sleeping except to cry out in pain.  His cries are hoarse or "froggy-sounding" since he was on a ventilator for the surgery.  He basically sounds like a squeeking door opening.  The nurses are giving him morphine every 4 hours.

We are exhausted as we've have had a few sleepless nights in preparation for today.  Breck is about to lie down for an early evening nap.  Brian is about to leave to take Oliver to his grandparents' home, where he will be staying while we are in the hospital with Bennett.  Oliver is happy with this arrangement. :)

Humpty Dumpty Surgery Update: Day 1 - 12:53pm

We are finally settled in our hospital room.  Bennett is asleep.  He seems to have some pain but overall feels ok.  His tummy looks *beautiful*!!

We have just eaten and are moving our stuff into the room.  We will post pictures soon.

Humpty Dumpty Surgery Update: Day 1 - 9:23am

Dr. Hamner just came out to see us.  He said Bennett did great!  Bennett is all closed up and is now being moved to recovery.  It will be about an hour before he is moved to his hospital room, if all goes well.  Dr. Hamner said the incision is small and the scar tissue looked good. We are looking forward to seeing him soon!

Humpty Dumpty Surgery Update: Day 1 - 8:50am

Bennett is still in surgery.  The nurses called at 7:45am to notify us they had just started.  We just received another call a few minutes ago letting us know they are currently in the process of reconnecting his colon.  We are really starting to get excited about what this means.  I think we are starting to feel relief instead of the anxiety we have been feeling.

Bennett was put to sleep using a mask.  The nurses asked us yesterday what flavor we wanted him to "go to sleep to."  We chose banana. :)  After he was put to sleep, they put an IV in in order to give him pain medication.

We are fairly distracted during this time as our friends Lindsay and Josh from Waco have joined us (as well as their little ones, Lilli and Roy).  Oliver is with us too. So, we are fairly entertained by 3 toddlers in a small waiting room. :)  This makes our time back at the hospital again as enjoyable as possible.  We just with little Bennett could have joined us.

Humpty Dumpty Surgery Update: Day 1 - 7:00am

Bennett has been taken back to surgery.

In the Pre-Op room, we had to undress him and put him in a Cook Children's Hospital t-shirt.  They gave him some socks but they were much too big for even his big feet.  So, we wrapped him in warm blankets and sent with him his favorite toy: his giraffe.  They took him away on a big stretcher.  He was half asleep so he had no idea. :) We kissed him and off he went.

We are now in the surgery waiting room.  We should get a phone call from the surgery nurse for an update in about an hour.

'Twas the night before Benntt's Humpty Dumpty Surgery

'Twas the night before Bennett's Humpty Dumpty Surgery
and all through the Ronald McDonald House
not a creature was stirring
not even a little boy named Bennett.

The clothes (we picked out to wear tomorrow) were hung over the dresser with care,
In fear that the 6am Pre-Op check-in at the hospital would too soon be there.

The children were nestled all snug in their makeshift beds (on the floor),
While the parents' visions of no more ileostomy bags danced in their heads;

And Daddy with his laptop and mine in my lap,
Had just settled down for what would seem like a short little nap,

When out of the blue arose such a clatter,
Daddy sprang from the bed to see what was the matter.

Away to the shower and grabbing breakfast like a flash,
Threw on some clothes and fell over the trash.

The moon on the breast of the front yard fake Hospital snow
Gave the lustre of mid-day to objects below,

When, what to my wondering eyes should appear,
But a 5am cellphone alarm going off next to my ear,

With the excitement of Bennett's surgery making us so lively and quick,
I knew in a moment, it was here - this was it!

More rapid than eagles to the hospital our little Toyota came,
And we double checked we had everything, listing it by name:

"Now, Insurance card! Driver's License! Computer! And Clothes!
Diaper Bag! Magazines! Snacks! And Cell Phone! 

So up to the 2nd floor with Bennett we flew,
Mommy, Daddy and big Brother Oliver, too.

The surgical staff sprang through the door with a whistle,
After a goodbye kiss, they took Bennett from us and went away like a thistle.

But I heard the surgeon exclaim, ere he walked out of sight, 
"We'll take care of him...his bowels put back together just right."

**This may or may not be *fully* accurate.  But the poem was too fun so we kept going.  It was pretty much like this. :)

15 December 2009

Pre-Op Update for Humpty Dumpty Surgery

We had a full day of appointments for Bennett today.  We are turning off the lights and getting ready for a few hours of shut eye before we have to be at the hospital at 6am.

We got the ok on the surgery so we're full speed ahead.  Bennett is 10lbs and everybody is happy.  He can eat until midnight but nothing but pedialyte after that.  We're hoping Bennett won't notice the two bottles he won't be receiving (yeah, right). :)

Our posting to the blog will be sporadic tomorrow so we'll "tweet-post" by putting up small updates as we get them.

The doctor feels really good about the surgery and that has put our hearts to rest.  We believe all will go well and we'll be home by Christmas!

14 December 2009

Packing and Ready to Go!

It is 11pm and we are almost done packing.  Breck and Bennett are leaving tomorrow morning to go to three appointments: an appointment with the pediatric surgeon, an appointment with the gastroenterologist and Pre-Op appointment.  Brian and Oliver will drive up separately tomorrow afternoon.

We will all stay in Fort Worth tomorrow night.  We hope to stay at the Ronald McDonald House if there is a room available but if there is not, we are planning to stay in a hotel.  We hope all will go well with an infant, toddler and two adults crammed into a small room for a short night's stay as we will be up very early for Bennett's surgery.

The surgery will be at 7am on Wednesday.  The only thing that will keep Bennett from surgery is if the doctors tomorrow find a reason why they don't feel confident about Bennett going forward with it.  We are very confident that things should be fine but we are prepared for the disappointment, should it happen. 

Since it will be an long day tomorrow, we are off to bed.  We are hoping Bennett's Brigade will be praying in full force Wednesday morning.  We do not fear anything will go wrong...but we are realistic that major surgery is still major surgery...especially on a little guy like Bennett.  No matter what happens - God is always good.

December 2009: Pictures 3

Bennett's first photographed smile.

A classic Bennett look. 

Our little cutie-in-a-hootie.

Baby blues.

Trying to get Bennett to smile by using "Momma-talk."

Kissing her sweet boy.