31 July 2010

Video: Cystic Fibrosis and Feeding Tubes

We found a few fabulous videos about CF and Feeding Tubes online. It helps us deal with our own fears and issues on the topic to see others are doing this too.

Overview: Tube Feeding and Cystic Fibrosis from Children's Memorial on Vimeo.

All About Gastrostomy Tubes: Tube Feeding and Cystic Fibrosis from Children's Memorial on Vimeo.

Breck's Thoughts: Snotballs

Yesterday, while walking through Toys-R-Us to pick up a birthday gift for one of Oliver's friends, Bennett had one of his oh-so-regular vomit moments.  (Unfortunately, Bennett seems to be throwing up several ounces of formula with about 80% regularity these days.  It happens so often that he gets about 2-3 clothes changes a day. We're not sure why he is having this problem but will talk to the doctor on Monday.)

Nontheless, Bennett was happily riding in the bright blue Toys-R-Us buggie when all of the sudden I heard the sound of fluid hitting the cold white-speckled tiled floor down below.  I stopped and assessed him.  Somehow he was dry.  My foot and the floor was another story.  I grabbed a burp cloth and started to reach down to clean up the mess until I noticed a big wad of snot.  Among the white formula that Bennett's tummy wanted out was a green burgerish snotty mess.  A glob of mucus just sitting there.

It was gross.  But I cleaned it up (because that's what moms do - we clean up our kids' vomit, poop and mucus) and I got over my own feeling of I-want-to-run-because-this-is-disgusting (because that's also what moms do - we love our kids too much to care).  And then I thought...

this snotball is what's in Bennett's body, in his lungs, every day, building up.  This is what I'm fighting.  It's like Nickeleon my baby's lungs.

It's the kind of snot that you only get when you have a really bad cold - or when you've been crying hard enough to use alot of tissues - or when you sneeze/cough so hard wet and sticky comes out onto your hand...

And it's in my kid's lungs...and in his tummy...and it's causing him tremendous trouble everyday.  It is this snotball that will eventually cause him to stop breathing one day.

And then for a second, in the middle of Toys R Us, I just stopped and took a deep breath.

My breath was clear and easy.  No rattling sound.  No need to cough.  No need to clear my throat.  No need to blow my nose.

And I realized that, even after 10 months of CF being a part of my daily life, I still do not really have any idea of what my child must feel like - or eventually will feel like - to have lungs junked up with that snotball-kind-of-mucus.

For a second, I wanted to take a picture of that mucus, just to remind me, this is what we're fighting.  This is what is taking up home within Bennett's body.


30 July 2010

Update: Getting ready for Monday

Bennett is doing really well these days.  We are looking forward to our day in Fort Worth on Monday as we have several doctor appointments set up.  We will have an appointment with Bennett's CF and GI doctors, as well as a liver ultrasound to check how his liver is doing (he's been on medication for high liver enzymes for the last two months).

We look forward to meeting with the GI doctor and discussing Bennett's continued GI issues (although, they have significantly lessened since we tinkered with his formula).  We are, however, concerned with the frequency of his vomiting during his feeds (he throws up about 80% of the time). 

We look forward to finding out how the CF doctor wants to treat his respiratory symptoms - runny nose and wet cought - that he's had since the beginning of June.  Bennett hasn't felt badly and has had no fever, but we would really love if we could help him get rid of his runny nose and cough.  We're not sure what the doctor will suggest we do.  It seems there is alot of "wait and see" situations with CF because of the hesitation to use antibiotics for fear that Bennett's bacteria would become antibiotic-resistant.

We're expecting that Monday's Day of Doctor Appointments will be filled with good news.  However, every CF clinic appointment offers a small feeling of butterflies as we anticipate what the doctors might say - more medication?  another test?  concern over something else?  hospitalization?  We hope not.  But we anxiously wait to see.

29 July 2010

Pictures: Sitting Up In Bed

We walked in to find Bennett sitting up in bed after a nap all by himself a few days ago!  Before his nap, he could only lie down or be placed in a sitting position if we set him up.  After his nap, he could do both all by himself!  Kids develop so fast during their first year.  It never ceases to surprise us when a baby hits a milestone!  The human brain is so incredible!

Mr. No-Pants-On is happy from his nap...and so proud he can now sit himself up without any support from us!

Playing Peek-A-Boo!

This is actually a bad picture but it cracks us up.  We see this all the time now, just two little eyes and a practically bald head peeping over the crib.

Reaching for Mommy's camera.

So happy!
Oliver comes to say hello!  His spot in Bennett's room is the little red and white stool.

Oliver would get in if we'd let him.  However, Oliver isn't bothered.  He just gets in as much as our gotta-keep-two-feet-on-the-stool-rule will let allow!

28 July 2010

It's not everyday you get a package from Norway!

It's not everyday that you get a package from Norway!  But today we did!

And what a cool lesson of thoughtfulness and world traveling it was!  This package came from Hanne, a Norwegian mother who also has a child with CF.  In fact, her little girl is just a little bit older than Bennett.  She recently contacted Breck after our blog entry about having to split enzymes and offered to send something that would help.

Inside the brown envelope that arrived in our mailbox was a small box.  And inside that were empty medicine bottles, a few scoopers and a blue thing - all things Hanne thought we could use.

There were a number of very cool things we noticed when we examined the things Hanne had sent.  First, we noticed how Creon (as it's spelled in America) is spelled "Kreon" in Norway, in fact, they call it "Kreon fur Kinder" (meaning Children's Creon).  Another interesting thing we noticed was braille was written on the Creon box.  And lastly, we noticed that Solvay is written on the items that were sent - telling us that Creon and Kreon are made by the same company...which is interesting since all of these cool Norwegian things that come with their Kreon cannot even be bought by Americans.

So, for example...On the left is Bennett's Creon.  It comes in a big orange bottle inside blue and red capsules.  We pick up a 30 day supply and must open each capsule and pour it on Bennett's food (until he's old enough to swallow his enzymes).  However, in Norway, the Creon (the tiny white beads) come in small glass bottles.  Norwegians only have to use a tiny plastic scooper (on the right) to scoop out the appropriate amount of enzymes.  How cool is that? (This is probably cool only to other mothers who are *sick* of opening up capsules - opening 15 capsules a day gets monotonous quick!)

Notice the tiny scooper (isn't it darling?  perfect for a Barbie cup!) is the same size as one capsule.

But wait - the Norwegians decided that even that was too labor intentsive.  So, they came up with something even better.  We're not sure what this is called but we figured out how it worked pretty quickly.

Underneath this blue piece of plastic is where you place the glass jar of enzymes (this jar is empty but in Norway, the glass comes full).

Then, all one has to do is turn the blue thing upside down and click the white bar back and forth.  This nifty contraption actually "doles out" the perfect amount of enzymes, depending on how much you need.  Click it three times to get three capsules worth.  Click more or less depending on your needs.  Isn't that awesome??  So easy!

So, Hanne, seeing the pain of poor Americans unable to utilize the newest of Creon inventions, decided to send us bottles and materials from her daughter's medication when she was done.  We have appreciated it so much.  Now, we can open our capsules and put them in the jars to use as we need.  The above picture is of about 30 capsules.  It takes forever but we're pretty sure it's well worth the trouble to open the capsules at one time, rather than everytime we use them.  But we've got our work cut out for us.  It's going to take ALOT of capsules to fill up that bottle!

Thank you so much Hanne for sending us such cool and time-effectient goodies in the mail.  And thank you Norwegians for coming up with such fabulous ideas!!

27 July 2010

Breck's Thoughts: Things I Love About You

Bennett, here are a few things that I love most about you right now.

* I love when I sneak in at night to check on you to find you are sleeping soundly under the blue glow of the feeding pump monitor which is working to fill you with calories even as you dream.  I love how that your little body is getting fatter even while you sleep.  I thank God for such a marvelous invention to help you stay alive.

* I love watching you bust out an "uh-oh" when you drop your toy or offer a one-handed (but sometimes two-handed) wave in reply to someone else's wave.

* I love how, sometimes, when I pick you up to I snuggle you in my arms, you bury your head into my left shoulder.  And then, as I let go of the embrace, you begin "talking" to me in coos.

* I secretly love how you always want be with me (because strangers are scary in your world right now).  I secretly love it because I know of he many times my heart has ached to be with you.

* I love when you belly laugh at Oliver's antics...or when you smile at Oliver, towering over your crib standing on a stool, each morning to greet your puffy sleepy face. 

* I love how, right now, you live one moment to the next with no care or concern about the future.  I love how you can be screaming in pain during one moment but laughing during the next.  It makes me so happy to know that while your CF-inexperienced parents are fumbling around trying to figure out what they heck they're doing with all of your treatments/medications/doctor visits/etc, you aren't fazed a bit!

Bennett, I love the joy that you bring to our family.  You fit just perfectly.

26 July 2010

Funny Things You See At The Doctor's Office

Obviously, we go to the doctor ALL THE TIME.  So, we find our "Doctor Office Finds" pretty entertaining from time to time. 

We found this book in our Pediatrician's exam room back in March.  This book was appropriate since it was around Easter...which is why we couldn't keep from laughing when we opened this beautiful little children's book called "The Parable of the Lily" to find...

...written in the book under the words, "This Book Belongs To:" was a child's handwriting which said, "Jacelyn Do not read or touch!!! No!!!!" and underneath that, in larger handwritten letters, "I Kill You!!!!"  (Click the picture to see it more clearly)

And at competely different doctors appointment a few weeks later, we opened this sweet book by Bill Cosby called "The Day I Was Rich" to which we opened to the first page and found:

A child had scratched out the title and changed it to "The Day I Was Rich Broke," also adding, to the illustrated boy's holding of a diamond, the word "Fake."

I guess some child was mighty possessive of the book in her doctor's examination room.  And another child clearly did not appreciate a fictional book about getting rich. 

24 July 2010

Day In The Life - Feeding Our Kid On A Pump At The Mall

Recently, we decided to venture out to the mall, which happen to fall right smack dab in the middle of Bennett's feeding.  So, here is another "Day in the Life - Feeding our kid on a pump at the mall."
It may be tricky but one can feed their baby on a pump while out running errands. 

Step 1: Stick the child in the stroller.

Step 2: Use a velcro strip to hang the filled feeding bag from the stroller handle.

Step 3: Safely set up the pump on top of the stroller umbrella.

Step 4: Plug the feeding bag tubing into the child's tummy.

 Step 5: Turn the pump on and set for the appropriate length of time needed.

Step 6: Give the baby whatever the baby wants to keep him happy for 30 minutes, including but not limited to an empty Chick-fila milk bottle.  (Note: as evidenced by the above picture, this sometime does and sometime does not work)

In our next edition of "Day In The Life," find out how one can feed their baby on a pump while riding in the car!

23 July 2010

Feeding Clinic Evaluation

We are pretty stoked about an upcoming Feeding Clinic evaluation Bennett will have done in September.

Bennett has continued to struggle to eat.  He eats only about a tablespoon of food 3 or 4 times a day, not much for a guy who should be eating jars of baby food per day.

After several discussions with other CF moms we know from all over the country via Facebook and, we have decided to go forward with several suggestions to utilize a special feeding program run by many children's hospitals.

We did our research and have finally decided to go forward with the Baylor Feeding Program in Dallas.  This program seems to be very well designed.  Our favorite element about the program is its behavioral component.  In addition to having a speech therapist and occupational therapist involved (which most programs do), this program uses a psychologist to guide the child's therapy.  We feel this is really important because eating is not just about physically putting things in one's mouth and swallowing, but also choosing to do so.

These days, Bennett will tolerate very little to eat.  He chooses to eat only applesauce and pears.  Anything else is met with a clenched jaw and some fast moving hands.  He also likes to sling his head side to side until we give up in frustration.  He is beginning to show us that he is choosing not to eat.

However, Bennett doesn't have the luxury of choosing to eat.  He must take his enzymes by mouth before EVERY feed.  So, this past week (before we knew that he would only eat apples and pears), we were forced to hold him down and open his mouth to get him to eat his enzymes.  It was a horrible situation for everyone involved.  So, we've resigned to feeding him whatever he will choose to eat.  We don't want him to be so limited in his food choices but it is not worth making it a traumatic experience for him. Ultimately, we don't want him to hate eating all together.

Also, until last night, we were having to wake him up in the middle of his sleep to feed him his enzymes since he uses a nighttime feeding pump.  Fortunately, after a call to the CF clinic, we were able to find a way to give Bennett his enzymes without having to wake our sweet baby (who, by the way, does not take too kindly to being awoken from his warm sleep to have a spoon of food with enzymes shoved down his throat).

We aren't really sure why Bennett isn't eating but we have a few hunches.  One possible reason is that many kids with CF do not have very big appetites, despite that in order to stay healthy, they often require double the number of calories for a child their age.

Another possible reason is that Bennett experiences alot of reflux, choking, gagging, vomiting and abdominal cramping when/after he eats.  Who would want to eat if they experienced such things after doing so?

A last possible reason is that Bennett had a breathing tube and feeding tube for several weeks after birth.  So, he likely started out with oral aversion pretty early in his life.

Another reason some CF children don't eat (a reason that probably doesn't yet affect Bennett) is because it's the one thing they control.  They can't control their medications, treatments, limitations.  But they can control what they eat.  So some choose not to do so.

We have had a wonderful speech therapist work with us in the past (she just moved) and we plan to continue to work with private speech therapists again in the future.  However, after speaking with other CF parents in our situation, we have come to realize that weaning a child off a feeding tube is a difficult and daunting experience - one that likely needs a specialized team to do so. 

So, we are looking forward to what the experts at the Baylor Feeding Clinic suggest that we do when we meet with them in several months!

21 July 2010

The evolution of Bennett's first crawl.

It happened!  Technically, this was it.  His first crawl.  We set up the bait.  He set out to get it.  For some reason, we were shocked that it worked!  (Watch his back left leg move, along with the position of his hands.  We apologize that these pictures will "crawl" by as you scroll...but we caught the moment using the next best thing to video - frame by frame photography.)

Got it!

Sweet success!  (Momma helped prop him back up again to catch his sweet smile.)

If you worked hard, you should certainly enjoy it.  (We're enjoying watching his new moves develop and those blonde curls grow.)

20 July 2010

Up on all fours!

Our Snug-a-bug is busy exploring his world these days.

For about the last week, Bennett has begun to get up on his knees.  Just in the last day or so, he's begun to rock back in forth on them.  We know that crawling is coming soon! fact,

Shopping is always fun...even if it's for medical supplies!

One of the things that is difficult about Bennett's g-tube is it's hard to find clothing for a 9 month old that doesn't have bottom or top snaps.  Onesies and other one piece outfits allow easy access to his diaper but not his belly (aka g-tube).

We do find things every once in a while (we typically have to dress him in 12 month clothing - a shirt and a pair of shorts) but on a whole, it can be difficult.  This should resolve when he is older but, for now, the main clothing choices for babies are onesies.  So, shopping for Bennett isn't much fun with this necessary requirement to get to his g-tube often.

However, every rain cloud has a rainbow, right? The nice thing about a g-tube is it opens up a whole new line of items from which to purchase!   We didn't know, until now, that there is a whole market for "adaptive clothing."  How incredible it feels that many people have gone before us, felt needs similar to our own and invented a way to resolve these challenges!

Here are suggestions from other CF Mommas who have or know those who have g-tubes:

18 July 2010

Day In The Life - Feeding Our Kid On A Pump At Home

Honestly, despite our disappointment that Bennett would need to use a pump at every feeding, we are so thankful for such a nifty device!  Feeding has never been so easy!

We wanted to document what it's like to feed Bennett these days - and to show our ingenious creativity, considering our limitations!

We began the process fairly simply.  The necessary items: a pump, milk and a bag.  The goal: keep the milk in the bag and the baby fed.

We really struggled at first on what to do with tethering an almost crawling 9 month old to a pump for 30 minutes.  But, we realized that the highchair is a play-pen in a box.  It keeps him "put" while keeping him happy.  We can feed him the same time we are eating or when we are at play, we can keep him entertained by the chaos of the Gamel family kitchen.

We keep the cord from his tummy away from his ever-so-curious hands by putting it from his tummy down underneath the highchair tray at attached to the feeding bag hanging behind him.

We recently learned that our feeding pump (Enteralite by Zevex) has a corresponding backpack to make the pump portable.  (Typically Bennett's pump stays on his IV pole in his room.)  However, the backpack (not covered by insurance is $115).  So, we decided to skip the $115 and pay $7 at Walmart for a mini-backpack which works just as well!

For now, we use an electrical velcro strap from Lowes to attach the backpack and feeding bag to Bennett's highchair.  We use the backpack to hold the pump.  Our friend Lindsay said she will soon sew us a little hook inside the backpack so that we can actually close the backpack and just hang the feeding bag inside with a caribiner.  But for now, we use the velcro strap to keep both bags upright.

We set the pump for 30 minutes and allow it to beep to remind us that Bennett's feeding is done.  Then, we clean out the bag to reuse during the next feeding. Insurance provides us only 30 bags per month so we have to use a bag for an entire 24 hour period.

Thank goodness for insurance!  Believe it or not but that little 5 lb. thing costs $1600!!  Now that we're traveling with it outside our home, we're so worried that we are going to drop it and break it.  However, this nifty little $7 backpack seems to be working out just fine so far.

Coming soon...Feeding Our Kid On A Pump In The Car...and Feeding Our Kid On A Pump While Doing Errands!

17 July 2010

Update: Cancelled Colonoscopy

Bennett's abdominal cramping/pain has lessened significantly since we tinkered with his formula concentration.  He is now getting the correct number of needed calories per day but diluted to 20 calories per ounce (this is typical calorie count of formula for babies).  He seems to be handling it it very well. 

In addition, per our CF doctor's advice, we have exchanged five minute bolus feeds with a syringe (allowing the formula to go through the g-button and tubing with gravity within a 5 minute time period) with 30 minute bolus feeds with a pump (setting up a pump to push the food gently over an extended period of time).

Both of these things have really helped Bennett tolerate his feeds much better...causing us to rethink at the last minute whether having a colonoscopy next Tuesday was really worth the risks for putting him under anesthesia.

On Friday, we called Bennett's GI and CF doctors and discussed the issue.  For now, they are in agreement as our initial concerns over Bennett's being able to handle his feeds has subsided with our changes in his formula concentration.  However, we will continue to talk with them about the decision to go ahead with further testing and if they feel it is necessary, we will reschedule it in the near future.

Bennett's "painful poops" are not gone completely.  But they are significantly better.  He is not, however, having any more problems with projectile vomiting.  And we are thrilled!!!  Bennett is beginning to gain weight again and seems to be doing wonderful on the pump!  He is even eating more baby food!  (We finished one jar of baby food over the course of two feeds today.  This is absolutely a first for him!  He has even started to cry if we aren't fast enough.  We couldn't believe we were feeding *our* baby Bennett!)

Two concerns still remain.  Besides some residual pain that we hope may eventually go away, Bennett is still having rectal prolapse issues and his bowel movements are not the way they should be.  So, we will continue to consider with Bennett's doctors on what we should do.

Nonetheless, overall, for the last few days, Bennett has been doing really well.  We are seeing more smiles than cries...which gives us more smiles too!

Thank you to all who have recently remembered Bennett and our family in prayer.  It truly feels like, at some point over the past week God literally reached down, grabbed us in his hands and gave us an incredible peace.  At no time has peace felt so good than now.

16 July 2010

What We've Learned Tip #3: Fight For Your Voice

While we have not been doing this long, we have already learned alot about raising a child with special needs.  We felt it might be useful for us to write down tips we have learned about raising a child with special needs (more specifically, a child with Cystic Fibrosis) to share with others.  We have much yet to learn but here's what we've gotten so far:

What We've Learned Tip #3: Fight For Your Voice

One of the things we've learned relatively quickly now that we have a child with special need is to speak up on our child's behalf.  We have learned that being our child's advocate means giving him a voice.

It seems like that would be easy since so many people are looking out for Bennett's best interest - his doctors, his nurses, his therapists, his parents, etc.  However, there are times when these trained adult voices disagree.  And it's up to us, as parents, to make decisions on his behalf.

There have been at least two separate situations so far in which we have had to look the expert in the eye and say we strongly disagree.  It is very difficult to face someone with much more training on a subject that ourselves and say we feel we know best.  But the one thing we have realized we are best trained in is: knowing Bennett.    

Daily, we attend classes at the Bennett Medical School, the Bennett Nursing School and the Bennett Enter-Any-Descriptive-Name Therapy Training Program.  We see our little guy 24:7.  We put him to bed, we wake him up.  We change him, feed him and clothe him.  We see his silly side, fussy side and cuddle side.  We are, quiet frankly, experts in our child.  And so, one of the things we have had to do is to fight for our voice in this process.

This is not for the faint at heart.  If not careful, it can leave some, if not everyone involved feeling hurt, insulted and/or unheard.  But numerous letters and periods behind one's name does not necessarily mean one is always right.

We feel very thankful to have such a fabulous CF doctor who told us recently that she appreciates second opinions and other voices.  This is so important when so many people are involved with helping our son thrive.  And we really appreciate when these other voices being heard include our own voice.

Bennett is worth fighting for and we will continue to do it.  But learning how to be heard can be hard.  We have had serious sit-down conversations with several of Bennett's medical caregivers.  This has always turned out really well for us, but has risked throwing our hearts in cardiac arrest as we can feel frightened to challenge the authority of those better trained than us.

Nonetheless, we are Bennett's advocates - his parents.  And we will speak for him until he can do it for himself.

14 July 2010

Pictures: Standing Up!

Our little boy is getting big and standing up!

Bennett has recently shown us he can stand up and hold on to something by himself.   He can't get up there or down from there without help.  But he can stand up without support and that is barrels of fun for him.

Our sweet boy.

Bennett is just a-talkin' in this picture.  Usually he babbles "da-da-da" when he's happy.  (Actually, it sounds more like "die-die-die" but we're going to pretend he doesn't sound like a baby "Chucky."  Should we be frightened?)

And Bennett is just a-chewin' in this picture.  Big Brother Oliver is obviously no where to be found (Oliver was likely at the dinner table snacking himself when we took this picture).