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Archive for November 2009

Video: Bennett's Swallow Test

Monday, November 30, 2009

Here is a video of Bennett getting his Swallow Test at Cook Hospital a week or so ago.

This video shows Bennett drinking from his bottle and is about 6 seconds. (I wasn't supposed to be videotaping so had to get special permission).

We had to take Bennett to Radiology in the Hospital.  He was given barium to drink in his bottle and placed in front of a camera.  On the video, you can see Bennett suck on the nipple, keep the barium in his mouth for a brief moment and swallow.

The Doctor said his swallow looked great.  Bennett has no problems accidently aspirating liquid in his lungs when he drinks.

Side note: The barium was a bright white-out white going in...and was the same color going out.  Creepy!


If for some reason, the video above doesn't work, click here.

Things we've learned so far...

Things we've learned so far about caring for a CF Child:

1.) If Bennett has a fever more than 100.6, it is an immediate admission to the hospital.

2.) Bennett *must* get a Synagis shot no less than every 30 days between the months of October-March from now until he is 2 years old.  A Synagis shot is a FDA-approved medication to help protect high-risk babies' lungs from severe RSV.  RSV can be fatal for Bennett.

3.) Bennett must take ADEKs Vitamins every day because his body cannot absorb important vitamins like Vitamin A, D, E and K (hence, ADEKs).

4.) If we go to the ER with Bennett, we should always avoid the waiting room and use the ambulance entrance instead.  This is to avoid Bennett from being exposed to anyone with the sniffles, a cold, the flu or contagious infection or disease that might make him sick.

5.) Bennett will never get fat.  Bennett must be fed high calorie, high fat food daily.  However, since his body does not absorb the fat, he will never get fat.

6.) Bennett will have to take multiple pills every time he eats for the rest of his life.  Otherwise, he will not absorb his food and will starve.  At 8 weeks old, Bennett already takes 13 pills per day.

A Visit from Nana and Papa

Sunday, November 29, 2009


Nana and Papa (Brian's Parents) came to Waco for Thanksgiving, something we had planned before Bennett's birth.  Little did they know what a Thanks Giving it would be!  Nana and Papa were a huge help to us as they were here when we brought Bennett home from the hospital.  This was their first time to meet their newest little grandson.


Papa and Baby Bennett.

 
Nana loves on Bennett.



Giving Bennett a scrub down.  (Nana is a nurse so she is really great at handling Bennett and helping us care for his medical needs.)


 
Finding himself in the mirror.

 
Looking at Nana.


 
Nana talks to Bennett while she baths him.


 
Bennett loves his bath.

Video: Playing with Bennett

Update 2:28pm: The video should *really* be working now.  Sorry, it was accidentally set on private.

Update 12:59pm: The video should be working now.  If you can't get the video to work below, click here.

Unfortunately, the hospital's wireless internet would not allow us access to YouTube.  So, while we made some fun videos during our time at Cook Children's, we couldn't upload them until now.

Here's a fun video of Mumsy and Momma having fun with Bennett:

Our First Visit to CF Clinic

Saturday, November 28, 2009

So, whatever happened during our visit to the CF Clinic a while back?  We were able to experience CF Clinic for the first time two and a half weeks ago.  However, we haven't had an opportunity to blog about it until now:

Our first CF Clinic appointment started with "new patient" paperwork (as do all first doctor appointments).  Once we were called back for our appointment, we were given a clinic room.  This room is like having a table at a restaurant.  You sit there while everyone comes to you.  One of the greatest benefits of visiting a CF Clinic is the "team" mentality that exists.  Each person in the team has a specific role and facilitates support of one aspect of the CF child's overall health.

First up was the CF Clinic nurse who works with our Pulmonologist, Dr. Dambro.  Denise was our sort of "guide" for the appointment.  She explained how the appointment would go and what to expect.  Typically, the CF Clinic nurse's role is to answers sick patient calls, call in prescription refills and to answer questions about medications.

After that, we met with Carrie, one of two CF Clinic Coordinators.  The CF Clinic Coordinators typically arrange everything we need during a CF Clinic visit.  If we need to meet with any additional doctors while meeting with the CF team, (surgeons, GI docs, etc.), the CF Clinic Coordinators arrange this.  The CF Clinic Coordinators also arrange any medical tests that need to be done while we are at "Clinic". 

Shortly after meeting with Carrie, we met with Staci, the CF Clinic Dietician.  Staci asked us lots of questions about what Bennett typically eats, how much and how often.  Staci has a really important role in the CF Clinic.  She will monitor Bennett's weight gain and growth, advise us on Bennett's diet and help us with overall nutritional issues.  In a few months, as we begin introducing other foods, Staci will evaluate how Bennett's body is adjusting to these foods - whether or not they have the needed calories and whether they are being absorbed.

After the Dietician, we met with Lauren, the CF Clinic Social Worker.  Lauren's role is to provide us information and referrals to community services and to offer advice on patient assistance programs that cover medication costs, medicaid, insurance, etc.  Because the cost of caring for a chronically ill child is very expensive, we imagine we'll be communicating with Lauren quite frequently.

Last but not least, we met with the Pulmonologist and attending physican Dr. Dambro.  She is the one who assesses our situation and considers any medical or diet changes that need to be made.  During this visit, she talked with other members of the team about any concerns and gave us her recommendations.  This is how we ended up in the hospital.  Dr. Dambro believed it was best for Bennett.

We didn't meet with the Respiratory Therapist since Bennett's lungs are very young and very clear.  However, when Bennett is of preschool age, the Respiratory Therapists will administer Bennett's pulmonary function tests.  The Respiratory Therapists also provide educational materials for respiratory therapies and work with us on aquiring necessary medical equipment such as nebulizers, air compressors, CPT vests, oxygen, etc.

We have worked with a few Child Life Specialists in the hospital but we did not meet them at the clinic.  At this time, Child Life Specialists are not necessarily needed.  However, they will be vitally important as Bennett (and even Oliver) grow older.  CF Clinic Child Life Specialists provide developmentally appropriate education about illness, treatment and recovery tools (such as dolls, medical equipment, books, etc.).  They will offer both of the boys therapeutic play opportunities (medical play) to gain insito into Bennett and Oliver's perspectives of Bennett's diagnosis.  The CF Clinic Child Life Specialist will also come in handy when Bennett is of school age as she will provide visits to Bennett's school to explain his illness and treatment to his classmates and easing any transitions he may have from the hospital to the classroom.

Of course, Bennett was admitted to the hospital after his first CF Clinic appointment.  But in the future, we will hopefully have a good appointment and be sent off on our way.

If Bennett stays fairly healthy, we will be asked to return anywhere between 3-6 months.  However, should he get sick, he will be monitored by the CF Clinic team more regularly.

Finally At Home: Update 1

Friday, November 27, 2009

Life has continued to feel "upside down" since we took Bennett home a few days ago. 

Bennett's Nana and PaPa (Paw-Paw), Brian's parents, arrived on Tuesday night.  They have been here with us for Thanksgiving and will stay through the weekend.  We have really enjoyed their company and have absolutely appreciated their extra hands during our first days back home.  Having them here has allowed us the opportunity to reorganize our life and even take a nap or two.

Nana and Papa have been so generous to let us sneak off for a few hours to run errands together with no children.  This has been very good for our marriage.  Stress and prolonged distance can really be overwhelming to a relationship built on similar experiences and constant communication.

Last night we had a HUGE SCARE!  Before going to bed, we hooked Bennett up to the pump to allow him to be fed continuously until the morning.  At 4am, Bennett began to cry out from his bassinet next to our bed.  Breck, still very groggy, reached down to pick Bennett up.  All of the sudden she felt a "pop" and heard Bennett scream.  Immediately, Breck knew what happened.  She began to cry out, "Oh no, Brian!  Oh no! Oh no! Oh nooo!" 

Brian sat up in bed and turned on the light, "what?! What, Breck?!"  Breck responded, "Brian!  His G-button got pulled out!  I ripped out Bennett's G-button!"  (Apparently, the tubing that goes from the pump to Bennett's G-button got caught on something and the G-button was yanked out while Breck lifted Bennett onto the bed.)

Breck looked down at the hole in Bennett's tummy.  The only thing she could see in the big hole was a pool of white liquid - clearly, the milk that had been pumped into his stomach minutes before.  Bennett had stopped crying at this point.  It seemed that once the shock of having his G-button ripped out had subsided, Bennett was completely pacified.

Breck grabbed her cellphone and began dialing the hospital in hopes to reach one of the nurses that had recently taken care of Bennett at Cook Hospital.  Simultaneously, Brian began combing through the G-button manual we were given after Bennett's surgery.

Ten minutes later, Brian was putting the G-button back in Bennett's stomach cavity and pumping water into the balloon which keeps the G-button in place.  It turned out putting the G-button back in was very simple to do and once put back in correctly, Bennett fell fast asleep.

Needless to say,  it took us much longer to eventually fall asleep.  Our hearts had just dropped right out of our chests.  Thankfully, everything turned out ok and now we are very careful about moving Bennett when his G-button is in use!

Happy Thanksgiving!

Thursday, November 26, 2009


Today, we have so much to be thankful for.



For our big turkey,


Oliver...


and for our littlest turkey,



Bennett (this little turkey didn't quite weight enough to make it to the dinner table this year).



We are *so* thankful to finally be home and to have both our boys together.
 


Looking back over the last 8 weeks of our life and at the 60+ thank you notes that still need to be written to friends and family (and to those we don't even know), thankfulness overflows from our hearts.  Thank you for the prayers, the gifts and the words of encouragement.  God is so good.

Eight Weeks Old

Wednesday, November 25, 2009


Bennett is 8 weeks old today!  This big elephant is a stuffed animal given to him by one of the Child Life Specialists at Cook Hospital.  It turns out the company "Melissa and Doug" donated alot of these big overstuffed animals to the Child Life Department to use as needed.  In the course of conversation with one of the Child Life Specialists, Whitney asked if Bennett would like to take one of them home.  We appreciate such a fun gift as it will be a reminder to our whole family of our two weeks at Cook.  And...it will be a great stuffed animal to take pictures with as Bennett continues to grow.



These pictures were taken yesterday, Bennett's last day in the hospital.



Enjoying his mobile.



Posing with a gift from Bennett's Uncle JC (an Ole Miss pacifier and Ole Miss stuffed animal).

The future of our family.

Tuesday, November 24, 2009

We have been asked many times whether or not we are planning to have more children now that we know there is a 25% chance we would have another child with CF.

We have decided that at this point, we do not plan to have any more biological children.

Our decision not to have any more biological children was a thoughtful one but also an easy one.  Years ago we discussed and decided that should we find out we were carriers of a serious genetic disease, we would not likely continue to have children (ironic that we actually had a conversation like this...and it happened).  Almost as quickly as we heard Bennett's diagnosis, we knew Bennett would be our last.

For us, it is a decision to not knowingly risk putting another child through having such a difficult disease.  While we have a 75% chance that we would not have another CF child, a 1 in 4 chance is too high for us to want to try again.

This decision certainly does not negate the fact that we love Bennett.  He is very much wanted and valued - CF or not.   However, it would be very painful for us to have another child knowing there is a good chance they will spend much of their life struggling just to live.

We do see this a great opportunity, though, to more seriously consider our desire to adopt at some point.  For several years, we have talked about wanting to adopt but we wanted to wait until first we had children of our own. (We wanted to make sure we tried out our parenting skills on our own children before we relinquished them on someone else's.)  If we adopt, we hope to adopt a little girl since we have been blessed with two very fine boys.

It will be another 2 or 3 years before we actually decide whether or not we will expand our family through adoption.  Such an important decision will not be made unless Oliver and Bennett's emotional, physical and medical needs are able to be met.   We feel a great responsibility to fully care for them first before adding a new little soul to our family.

We are trusting God with our future decision to complete our family at four or to expand it to include another little one.  But for now, one thing we're pretty sure* about is that Oliver and Bennett will be the only little Breck and Brian look-alikes that will walk this planet.  :)


* indicates that we're 99.9% sure.  However, no tubes will be tied yet since we have been advised not to make such a permanent decision during a time such as this.  We will physically leave the option open but in our hearts, we're feeling complete with our two biological and very loved boys.

Nah-nah-nah-nah, Hey Hey Hey, Gooodbye!

We are leaving today!!  No more hospitalization for Bennett or for mom!

Bennett got the clear this morning from both of his doctors: the GI doc and the Pulmonologist/Attending Physician.  So, he is being discharged today.

Bennett gained one ounce since yesterday and both doctors feel he is doing really well.  The nurses constantly comment on how his color and alertness have improved since he has been here.  We agree!

We are now in the process of packing up our room and getting ready to go home for Thanksgiving!

Cook Hospital Day 12 - Pictures

Monday, November 23, 2009

Bennett gets his first submersion bath. (by the way, that little pink spot on his tummy isn't a belly button - it's his stoma from his intestine.  weird to look at.  we know.)


Just looking around hanging out in his bouncer.


Bennett is hilarious to wrap up.  No matter what you do, Bennett's little toes always seem to find their way out for some air conditioning.


 
Seriously!  Look at those toes wrapped like fingers around that feeding tube?!

Cook Hospital Day 12 - Update

One of the greatest compliments came yesterday from the Pulmonologist on call who is covering for Dr. Dambro for the week.  Dr. Hadeed, who had never met Bennett and had only read his chart said: "Bennett looks great.  I came in expecting to see a scrawny baby...."

Ah, yes!  Our boy may be little but he's hearty and he's looking better by the day! 

Last night, Bennett took his entire bottle - all 90ml with no bolus/tube feeding.  This is *huge* because it means that not only is Bennett is tolerating his feeds but he is hungry enough to take it all by mouth.

Despite the ups and downs of the past two weeks, no longer is Bennett screaming in pain, throwing up or choking.  It seems that his tummy and GI track are handling the food just fine.

And finally, we are starting to feel like home is on the horizon.

Since Dr. O has increased his per ounce calories to 24, Bennett can now drink 90ml of formula but gain more weight than he could when the per ounce calories were 20.  Dr. O plans to increase the per ounce concentration to 26 tomorrow.

In addition, Bennett is getting double the enzymes he received when we left the NICU.  So, he should be absorbing more of his food than before.

While we have not been given a discharge date, we are anticipating with the day before or the day after Thanksgiving as the day we will be released.  Hip-hip-hooray!!

Bennett's weight today: 8lbs. 4oz. (same as yesterday)

Breck's Thoughts: Confidence

Sunday, November 22, 2009

When you have a child in the hospital, you ought to consider yourself admitted too.

I have lived at the hospital for nearly two weeks.  I have slept on hospital sheets, spent my days with nurses and have followed doctors orders set for Bennett in the patient chart.   And as difficult as it has been for myself as well as my family, I realize, this has been so good for me.  It has been my own emotional hospitalization - a time for me to heal.

Bennett has not been the only one to make improvements over the last 2 weeks.  Changes have happened within me.  Twice this weekend someone has given me feedback about how I am doing which has made me realize that being stuck at the hospital could have actually been beneficial for me.   

On our trip back to the airport, Chelsea shared with me the things that surprised her most about our new life in Texas.  One of the things she shared was her surprised over how confident that I am in caring for Bennett.

"Really?" I thought.  "Confident?!?  I have no idea what I am doing."

But as I listened to her, I realized she is right.  I am more confident than ever before.  I know what I'm doing.  I know what I need.  I know where I'm going.  And it's no longer a big deal.  Ileostomy?  Piece of cake.  Enzymes?  Easy Cheesy.  G-button?  I could do it in my sleep.  :)

This isn't to say that our life isn't an adjustment.  But it is to say the adjusting as already begun.

The second time I heard this this weekend was when one of my favorite nurses returned after a few days of being off.  We were talking about all of the things Bennett needed - medicines, feeding, diaper changing, etc.  And she said, "gosh, girl.  you've really got all of this figured out."

And I smiled.  Because, while I don't exactly have all of this "figured out" - Yes, I can do this.

Bennett is no longer in pain.  And I'm thankful for his comfort.  I'm thankful for his hunger and ability to digest his food.  I'm thankful that he is gaining weight.

I'm so thankful he's my sweet boy.  Who cares about multiple medicines, difficult schedules and not-so-normal poop episodes?  We have so much to be glad for.

Being in the hospital has forced me to learn how to care for Bennett quickly and efficiently.  And it has given me the time to connect with Bennett in a very special way.   How lucky am I to be able to give undivided attention to my second baby in the same way I was able to with the first?

Being in the hospital has kept me from my life as I knew it.  I've been away from my work, my family and my friends.  But while I've had new stresses, many of the old stresses have had to fade into the background. 

Since having been admitted to the hospital, I have been able to learn about my son's diagnosis and ask questions of the CF experts.  I have felt the love of family and friends like none other time in my life. The overflow of love has been overwhelming.

I'm in the hospital too.  Going on day 12.

But I'm being cared for by the Great Physician.  And I can tell...

I'm improving.

Cook Hospital Day 11 - Pictures


The weekend went by too fast.  Our visit with our friend Chelsea has come and gone.  But what a wonderful time we had!


Chelsea has a little girl named Ada who is the same age as Oliver.  Her second child, Miles, is 9 months older than Bennett.  We came to visit each other in the hospital shortly after each of our children's births.  So, Chelsea really enjoyed finally getting to meet our second son!


 
Yesterday, Chelsea and Breck took a quick trip to Waco to visit Oliver and Mumsy, instead of having them have to drive to Fort Worth.  (The nurses reassured Breck that Bennett would be watched over and she need not to worry.)  Oliver was excited for us to visit.  (In this picture, Oliver awaits to open the 2nd birthday gift he received in the mail from his godparents.) 


Breck loved getting to spend a short time with her big boy.  Breck noticed how much he has grown and how much his language skills have developed since she saw him last!

In our hospital room. 


 
 The sign on the back of the hospital room bathroom door lists Bennett's daily caregivers in the hospital.  Each shift, the nurses erase the name of the previous nurse and add their own.  This is very helpful for us since the nurses change so often.  The nurses don't typically call us by name.  They tease about how every patient's caregiver is either "mom" and "dad." 


 
Chelsea's visit was a nice break to the monotony of the hospital.  Thank you, Chelsea, for a wonderful time.  Come back soon!

Cook Hospital Day 11 - Update 10:04am

Bennett is rockin' it these days!!!  We are now going on day 3 off peaceful feeds and a happy baby!!

Bennett is continuously eating 1.5 to 2 ounces by bottle (a huge increase from a week ago) and is tolerating the rest of his feeds with no problems.  The GI doctor was so happy with Bennett's progress that he ordered Bennett's formula to be increased in calories.  (This will help Bennett get the calories he needs without having to increase the volume of his feeds.)

So, now, instead of the 20 calorie (20 cal.) Elecare formula, Bennett is getting the 22 cal.  If he does well another day, the doctor will increase it to 24 cal.

The doctor is making very small changes to Bennett's feeding regime.  However, each day that goes by where Bennett does well means it's likely that Bennett will continue to sustain this good streak.

We have been cautiously optimistic as this journey has been such a roller coaster.  But it seems like Bennett is really starting to improve and heading back home looks like it's not far away.  By thanksgiving?  We hope...but are ok if not.

Yesterday, Bennett weighed 8 lbs and 2 ounces.  Today, he weighs 8lbs and 4 ounces.

Pictures: Bennett Gets His CPT

Saturday, November 21, 2009

 
Bennett gets his CPT (Chest Physical Therapy).  CPT is administered by "clapping" the back and chest in order to break up the mucus in the lungs.  Cystic Fibrosis makes the mucus in the lungs very thick.  If CF patients don't do the CPT, the mucus in the lung will build up and create a breeding ground for infection.


At the hospital, CPT is administered by Respiratory Therapists.  Since Bennett is so little, the respiratory therapist use a baby oxygen mask taped to a tongue depressor.


 
Bennett usually enjoys his CPT - it typically puts him to sleep.  Since he just ate, the Respiratory Therapist sat him up for his CPT.


 
Bennett holds on to his Respiratory Therapists' hand.  Bennett gets CPT twice a day.  He will continue to have CPT daily for the rest of his life - more when he has an infection and less when he is healthier.

Oliver's CF Genetic Test

Last week, we had Oliver tested for Cystic Fibrosis.  We didn't think he had it but we had heard of stories of people who had not been diagnosed with CF until childhood or even adulthood.

His pediatrician took bloodwork and had his DNA tested to see if he had any, either or both of the CF mutations Bennett has. 

The results just came back and revealed Oliver does not CF.  Our hearts are very happy over this.

However, he is a carrier.  Oliver has the Delta F508 mutation.  This means that he is like us.  Oliver has one good gene and one mutated gene. 

Since Oliver is only a carrier of 1 mutated gene, he will have no signs of CF (again, like us).  But the importance of our knowing he is a carrier is that we an explain to him that should he marry and have children with another carrier, his chances of having a child with CF is 1 in 4.

For us, knowing this information is very powerful.  We will always be able to explain to Oliver about his chances of passing on the CF gene.  And we will also always know that Oliver will not have to personally suffer from Cystic Fibrosis.

Cook Hospital Day 10 - Update 10:04am

Things have been great since my last post.  Bennett is tolerating his feeds really well.  This has surprised our friend Chelsea who arrived from NC yesterday.  She was expecting a 24:7 screaming baby.  I am so happy he is a 24:7 happy baby, instead.

As matter of fact, something that has surprised us is Bennett has begun to show more interest in taking his feeds by mouth.  As matter of fact, he's been taking about 1/2 to 3/4 of his feeds by mouth for the last few feeds.

Typically, Bennett would take about or less than 1 ounce by bottle.  Then, he would stop and would hae no more of it.  So, we were forced for feed the rest by his G-button (which seemed to cause him pain).

However, now that Bennett's pain has decreased almost completely, he is more interested in taking his feed by bottle.  This is *huge* because 1.) it shows Bennett is happily tolerating his feeds and 2.) it shows Bennett may soon be able to tolerate enough of his feeds that he wouldn't necessarily need to use his G-button at all.

We will keep his G-button in for as long as possible (for years, if we can).  It's an excellent way to give him what he needs without having to fight him on it.  If he begins losing weight, becomes sick or just won't take his meds (and CFers have TONS of meds), we will always have access to his tummy. 

Fortunately, we can keep the G-button for as many years as we want.  If it falls out, we can simply put it right back in.  Creepy...but awesome!

Cook Hospital Day 9 - Pictures

Friday, November 20, 2009

 
Bennett has done such a great job with his feeds today!


We loved getting to see our big boy contently lie in his bed looking around today.  (He is wearing his paci holder since Bennett is constantly dropping his paci on the floor.)


Daddy comes for a visit!  He loves his little boy!



 
Looking Around


 
Bennett's Crib Mobile: a stethescope and IV pole


 
Little babe in a big room. (a messy room by the looks of this picture)


Where's Waldo?  Can you find the baby in all of these patterns?


 
A restful feed makes a Momma happy!


 
Dr. Dambro and Dr. O were really happy with Bennett's progress today!  Dr. Dambro feels the switch from continuous feedings to bolus feedings was "a good idea."  We feel the same way.

Cook Hospital Day 9 - Update 4:37pm

This update is written by Breck as Brian has returned home to continue school work for now.

Today has already been much better.  Bennett has handled his feedings alot easier today.  Unfortunately, Bennett lost some weight.  Today, he weighs 8lbs 0oz (only 5 oz above his birth weight).  We are not surprised, of course, that he lost weight since he didn't eat much yesterday.  However, the doctors are not concerned yet.  We are all hopeful he will eventually begin gaining weight.

Brian came and stayed with us before flying out today to New Orleans for his trip.  Brian, who hadn't seen Bennett since Sunday, noticed how much more mature Bennett looks.  Bennett is looking more and more like a 2 month old at his point.  Brian also noticed how Bennett's hair has become darker (or so he thinks).  I imagine when I see Oliver again (he will come up with Mumsy tomorrow), I will feel the same way about how much he has grown!

This weekend looks to be fairly routine.  We will continue to feed Bennett what he can handle and eventually look to increasing his calorie intake.  However, we are very excited to have our dear friend, Chelsea, from North Carolina come visit us until Sunday.

Chelsea and I had planned a while back that she would come to Texas to visit after Bennett was born...but little did we know under what circumstances she would be visiting.  Since Bennett and I are stuck in the hospital, Chelsea is kinda enough to "rough it" with us at Cooks.  So, I am excited to introduce her our miniature bathroom, Sir Eats Alot Cafeteria, corded TV remote controls and sleeping on the foam couch/bed. :)  Such fun we will have!

Cook Hospital Day 8 - Update 12:22am

Thursday, November 19, 2009

This update is written by Breck as Brian has returned home to continue school work for now.

Dr. O finally did finally come this evening.  He said the ultrasound looked clear.  Apparently, Dr. O was looking for an obstruction or even the potential that he had intestinal folding.  Fortunately, he saw neither.  This doesn't surprise us. 

So, we're still baffled as to the medical reason for why Bennett screams in pain during and after his feeds.  I feel like I'm going to have one of those Discovery Health "Mystery Diagnosis" stories before it's all over with.

The "whole new plan" isn't exactly a whole new plan.  But the plan has been tweaked some:
* Continue to feed every 4 hours.
* Feed all allotted formula within two hours.
* Give 1 ounce (or as much as possible) by mouth and bolus the rest.
* Give Elecare formula with 1 tsp rice cereal per oz. during bottle feeding.
* Give a full 2 hour rest between start of feeds.
* If feeding is not tolerated, take off feeding and put on IV fluids until able to tolerate again.

While this is a similar plan as before, it seems the doctors are more sensitive to his pain and the fact that it's not going away.  I hope this new plan will allow us to look more closely at what we're doing and better determine what might be going on.

I'm starting to prepare myself for the eventual conclusion: there is nothing medically causing his pain but Bennett still must eat.  What exactly does that look like?  I don't know.

Cook Hospital Day 7 - Pictures



Baby love.  Breck's sister, Brook-Lyn came for a visit yesterday.

 
 Meeting Aunt Brook-Lyn for the first time!


 
Looking at her new nephew.



Holding Bennett for the first time.



Aunt Brook-Lyn loves Bennett's long fingers and "monkey" toes.



A kiss from Aunt Brook.



Bennett loves to have his little hands by his face.


 
 Little "praying" hands. :)