31 October 2009

Bennett's Bitty Bedside Birthday Party

Bennett turned 1 month old Friday so we threw a party!

Daddy enjoys some cake...

while Bennett sleeps through much of his party.

Bennett had considered having his party at Chucky Cheese but decided to have a very exclusive NICU party instead!

Bennett was alittle disappointed his friends forgot to bring presents but still had a great birthday party anyway.

Happy Birthday Bennett!

Happy Halloween!

Our Little Pumpkin

30 October 2009

Happy One Month Birthday, Bennett!

Today Bennett turns 1 month old.  In honor of his bitty birthday, we thought we'd look back over how much he has changed in just 4 weeks.

12 Hours Old

1 Day Old

3 Days Old

6 Days Old

9 Days Old

12 Days Old

16 Days Old

18 Days Old

20 Days Old

24 Days Old

28 Days Old

1 Month Old

29 October 2009

Day 29 - Pictures

Tonight during our visit with Bennett, Breck asked to wash Bennett's hair.  In some ways, this was "the first bath."

These pictures were taken by Bennett's nurse since Brian had to watch Oliver out in the waiting room.

Bennett slept right through his hair washing. One of the things Breck noticed most when she was caring for him was how much he has started to fill out.

Bennett - 1 Month Old
As matter of fact, she was struck by how much Bennett reminded her of Oliver.

Oliver - 1 Day Old
We think it's because even though in these pictures they are 1 month a part, Bennett still hasn't caught up to Oliver's birth weight of 8lbs, 1oz yet. However, they are close in weight so it's easier to see how much they favor each other.

Breck styles his faux-hawk just right.

All clean and warm!

While Momma was with Bennett, Daddy watched Oliver playing in the waiting room.

You'd think an empty waiting room full of chairs would be boring...but not to a two year old.  It's a play land.  Oliver "worms" his way across the chairs.

Stopping to watch the cars.

A shot of the hospital parking lot with a window reflection of the waiting room.  Breck was pretty proud of her photography...even if her picture doesn't exactly translate on a blog.

Day 29 - Update

Our extended family members, whom have been in town most of October, have now returned home.  This has given us an opportunity to "try this on our own" and create a new rhythm.

 Brian is back in school full time.  Earlier, we had considered an option for him to take this semester off after we learned of Bennett's condition.  However, we decided against it since the semester is half over already and since we really need Brian to complete his schooling so he can get a full time job and good insurance (this will always will be our greatest concern for Bennett).  We have been blessed with such wonderful professors at Baylor who have graciously worked with Brian to help him to balance his study with his family's needs.

These days, Breck is spending time balancing work, visiting Bennett in the NICU as often as possible (using once a day), coordinating Bennett's care with his doctors, reading up on Cystic Fibrosis, running the house, writing thank you notes and taking care of Oliver.  Breck has begun reaching out to the Cystic Fibrosis Foundation, looking into programs that will assist us financially with medical bills and speaking to CF families.  This is helping us to accept Bennett's diagnosis and recreate our expectations of the next few months.

Bennett's medical supplies have begun to arrive at home as we prepare to take care of him when he is discharged.   We have each received our flu shots and Oliver was able to get the H1N1 shot today.  We are SOOO thankful that Oliver was able to get the Swine Flu shot.  We were already aware of the need of the shot, but even more so now that we have a newborn with Cystic Fibrosis who cannot get the shot himself.  We hope that we both can get the shot as well soon.

Oliver is doing well but continues to show anxiety related to our changing situation.  Oliver seems very attached to us, especially to Breck, who has been home more lately.  He is not acting out much but has become violently angry when placed to bed.  We are praying for compassion for him and trying to be sensitive to his needs.  Brian rocked him for a long time last night.  He seemed to really like this.  We sometimes get so focus on how to get through the day that we forget that Oliver may need extra hugs and extra quiet time with Mom and Dad than normal.

Bennett is continuing to add weight which is fabulous!  Today was the very first day that Bennett gained enough weight to surpass his birth weight.  This is huge for Bennett because in order to stay healthy, CF kids need to be always be in the 50% percentile for their weight.  So, while he has struggled with gaining weight, things are looking up!

28 October 2009

Day 28 - Pictures

Our little guy is doing well!  He doesn't cry very often and is very happy to look around and watch the world around him...even if his world consist only of a myriad of sterile products, paid nurses and sick babies. 

Bennett sports the IV on the right side of his head today.   He looks like he's wearing a bow in his hair.  Don't tell Daddy.

Bright-eyed Bennett

Giraffe is always nearby.

Irritated that he isn't making it into Bennett's pictures often enough, Monkey takes things into his own hands.

Ah, snuggling next to Bennett makes Monkey happy.

Bennett finally concedes.

What a happy bunch.

The gang watches the busy nurses walk by.

Home sweet home...for now.  (Only two machines left: heart monitor and antibiotic IV machine!)

Day 28 - Update

We were unable to work it in our schedule to see our little guy yesterday but Breck was able to go this morning (Brian was unable since he had school).

Bennett continues to gain weight and seems to be doing well on his antibiotics.  He has another week of IV antibiotics to go.

Dr. Cipriani, the doctor taking care of Bennett while Dr. Guo is out of town for the week, wondered aloud today if Bennett would gain more weight once he was "put back together again." She suggested that we go ahead and try to get him surgery to reattach his ileus to his colon before he leaves the hospital, since it will be nearly 6 weeks out from his surgery by the time he is discharged next week.

We are very excited about this option as it would be best for Bennett and easiest for our family.  Of course, the surgeons may suggest we wait longer in ordeer to prevent scar tissue but Dr Cipriani will call us later after they have talked.   If he did have the surgery, Bennett would have to stay in the NICU longer, but ultimately it would save us time as he wouldn't have to be discharged and then readmitted later.  We're keeping our fingers crossed!

Breck has spoken with several CF families in the past few days.  It has taken us several weeks to pull up the courage to begin conversations with other CF families.  We have needed time to allow Bennett's diagnosis to sink in and to allow our questions to form.  Talking to other CF families is, in essense, admitting you're like them.  But that's a hard pill to swallow when only weeks before you had never considered you'd have your own CF story to share.

Also, wanted to send a shout out to Bennett's godmother Emily for the beautiful banner on Bennett's webpage.  We love it!  Thank you, Em!

27 October 2009

Welcome To Holland

Recently, a dear friend Jen Reeves shared this little story with us about being a parent with a child with an unexpected challenge.  We really appreciate this story as it is a fabulous analogy of some of the feelings we have had in the past few weeks.

WELCOME TO HOLLAND (by Emily Perl Kingsley.  (c)1987 All rights reserved
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.   It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

26 October 2009

Breck's Thoughts: Hope Deferred...

Hope deferred...makes the heart sick.  Psalms 13:12

I didn't expect for today to upset me so much.  But it did.
I know I wasn't supposed to anticipate, but I did.
I know I wasn't supposed to hope, but I did. 

And today, disappointment won out.

How do you plan your life with no plans?  This is how it has felt for the past 4 weeks...constantly living day to day, sometimes hour by hour - always at the whim of whatever turn your little one's health takes.  This is what it is like to live in the unstable world of the NICU. 

Early last week, Dr. Guo sat us down to let us know they were ready to begin the process of discharging Bennett.  I remember being stunned by this information as I had just gotten to a point of acceptance that Bennett's NICU experience might be a long one.  The shock of having only 7 days until we would bring our little one home moved us to get our home and lives as ready as possible to bring home a special needs newborn.  We quickly began the process of becoming experts on CF, breathing treatments and ostomies.

A few days later, we learned that Bennett contracted an infection that could prolong his stay for a short time.  We ended up canceling several plans that had been lined up in order to prepare us for his homecoming.  While slightly inconvenienced, we rested in the fact that Bennett's delay would be no more than a day or two later than expected.

We began to consider what it would be like to have Bennett home.  We had already prepared our home, his carseat and crib for his arrival.  That was nearly a month ago now.  But now, we were preparing again.  This time we were clearing out new drawers (for all the new medical supplies we would need), putting the baby's carseat back in the car (since we had removed it shortly after we knew he would not be coming home) and discussing about how we would arrange our life schedule around breathing treatments.

And, ever so slightly, we began to dream...about life at home with Bennett.  Who would watch Oliver when we went to the hospital to pick him up?  When would we likely want to begin inviting friends over to our home again?  What would it be like to have Bennett here for Halloween?

But I shouldn't have thought about it.  I shouldn't have gone there.  In hindsight, it just made today more painful.

The doctors decided to keep Bennett until next week to make sure he gained enough weight to come home and to make sure his infection was fully gone.

I agree with them.  I certainly don't want him home one second earlier than the doctors feel comfortable.  But, how much my heart began to hurt as I realized.  Bennett won't be home for another 11 days a least.  He won't be home to celebrate his one-month birthday.   He won't be home to experience his first Halloween.

You'd think I'd get used to this not-having-your-baby-home thing, but I haven't.  It doesn't get easier.  In some ways, I think it gets worse.

It feels like there is a point when you just want to throw your hands up and say, "I give up.  I'm tired of trying to hope."

Hope deferred makes the heart sick.  And my heart hurts.

Day 26 - Update and Pictures

Today's update has both good news and bad news...

Good News: Bennett is starting to gain weight now that the doctors have put him on a diet of 1/2 breastmilk and 1/2 Progestimil (pre-digested) formula.  This is probably because his body can best digest the formula, rather than the breastmilk.  

Bad News: Bennett will not likely be able to be exclusively breastfed.  In addition, he will likely need to be tube fed some point at home.

Good news: Bennett got to put his little right hand through an outfit today and wear his clothes the 'right way'! He did so because the nurses removed his PICC line.

Bad news: Bennett's PICC line was removed because the area near the PICC line is still infected.

Bennett's little hand is blue and purple from being so poked and proded.
Last Wednesday, Bennett's PICC line became infected with a staph infection.  Dr. Guo put Bennett on antibiotics almost immediately and had hoped to rid the staph infection by Wednesday of this week.  However, last night a test revealed that the infection was not getting better.  Therefore, the nurses took the PICC line out and replaced it with a new IV.

Bennett has had alot of IV's throughout the last four weeks.  So the nurses are always trying to find new places to place them.  Today, Bennett had to have his IV in his head.  Poor guy.

Good news: Bennett is being treated for his staph infection and we believe it will be healed soon.

Bad news: Despite our hope that Bennett would come home this Friday, the doctors have determined they cannot discharge him (due to the staph infection) until at least Wednesday of next week.

Understanding Cystic Fibrosis

We are just beginning to better understand CF.  Here are a few things we've learned so far:  

What Made Bennett Have Cystic Fibrosis? 
Unfortunately, Bennett received a faulty copy of a certain gene - CFTR - from each of his parents.  This faulty CFTR gene is what caused him to develop Cystic Fibrosis. 

Since a single copy of the gene would have prevented the disease, we know Bennett inherited two genes with mutations, a 1 in 4 chance since we are both carriers. (One of us has the most common mutation, the other a rarer one.  Neither one of us knew we were carriers before Bennett was diagnosed.)

The CFTR gene produces a protein found in the cell membranes of epithelial (surface) cells in the lungs, digestive tract and skin.  When working correctly, this protein moves Calcium ions out of the cell which results, ultimately, to allow water to move into the surrounding mucus, making it more fluid.

For Bennett, who has two faulty copies of the gene, the CFTR protein actually causes all of the mucus membranes in his body is more sticky, making it more difficult to move through his system. This sticky mucus causes all sorts of problems in his body.

What Problems Will Cystic Fibrosis Cause For Bennett?
Digestive Issues
In Bennett's intestines, this thick mucus prevents digestive enzymes (produced in the liver and pancreas) to reach his stomach. This issue causes two problems: First, Bennett is unable to properly digest food as it effectively passes right through him without his absorbing the nutrients from it. Secondly, the digestive enzymes that don't get into the stomach cause damage to his liver and pancreas. In time, this damage can produce cirrhosis (or scarring) of the liver and diabetes, since the damage to his pancreas destroys the cells that produce insulin.

Lung Issues
In Bennett's lungs, the mucus builds up in the alveoli (the sacs at the ends of the branches of the bronchial tubes) where oxygen and carbon dioxide flow in and out of the blood. This thick mucus prevents gas exchange and, if not removed regularly, can cause lung failure. Furthermore, the mucus provides a breeding ground for bacteria and as a result Bennett is much more susceptible to lung infection, especially pneumonia.

The most common cause of death for people with CF is lung failure.

Much of what will be done to treat Bennett will be simply to maintain Bennett's health as best as possible.  There is no cure for CF and, therefore, no way to make the body work properly.  Therefore, treatment involves preventing infection and keeping the body as healthy as possible for as long as possible.  However, deterioration of the body due to this mucus is ultimately unavoidable.

To help Bennett get all the nutrition he needs, he is being given copious amounts of vitamins each day.  At some point, he will be given enzymes to take before he eats so that his body will properly digest food.  Since many CF patients struggle to gain weight properly ("failure to thrive" - a common symptom of CF), Bennett is given a supplement to his breast milk with pre-digested formula.  He will likely be fed through a tube in his stomach at night, as well, in order to help him get enough calories.

To prevent damage to his lungs, Bennett will receive regular Chest Physical Therapy (CPT) four times a day. He will inhale Albuterol, which expands his bronchial tubes (which are narrower than most people's since they are coated with thick mucus) and we will literally beat on his back and chest to help dislodge mucus from his lungs.

Unfortunately, in time, Bennett will likely catch a respiratory infection.  He will be given antibiotics when this happens.  At this point, he'll likely stay on antibiotics for the rest of his life to prevent infection.

Exercise is very important for Bennett throughout his life as it will help to increase his lung function. 

Many Cystic Fibrosis patients are given double lung transplants as an end-stage treatment.  We will certainly consider this option if necessary.

Bennett's treatment will continue to change throughout his life.  We will know more about his treatment when we meet with the CF specialists in Fort Worth next month.

The life expectancy for Cystic Fibrosis has increased exponentially in the last 50 years. In 1959 the average life expectancy for a child born with CF was 18 months. In 1980 it was 14 years. Today Bennett is expected to reach at least 35 due to increasingly more effective treatment.
Because Cystic Fibrosis is the most common life-shortening genetic disease among Caucasians, there is a tremendous amount of research devoted to its treatment and cure. One possible cure is gene replacement therapy - the hope that Bennett could replace one of the faulty copies of his gene with a normal one.

Although finding out Bennett has CF has been tragic for us, we are fortunate to know now rather than later as early intervention and treatment will give him the best possible chance at thriving.

25 October 2009

Day 24 - Pictures and Update

Bennett is doing well. Breck was able to breastfeed Bennett the first time on Thursday. It seemed like a wonderful experience for the both of them.  

Since Bennett is eating normally, he is no longer being IV fed.  The doctors are monitoring his weight and recently took a stool sample to determine whether he will need to take enzymes (typical for most CF patients) before he eats so his body will be able to absorb the nutrition.  While Bennett has not yet gained back his birth weight of 7lbs 11oz, his cheeks are starting to fill out with that "baby fat look."

Unfortunately, Bennett contracted a staph infection from his PICC line a few days ago.  Therefore, he is being given IV antibiotics through his PICC line.  At this point, this infection is basically the only thing that is keeping him in the NICU.  Once he is completed with the 7 day antibiotics, he should be ready to come home.

The nurses tell us that when we are gone, Bennett is usually a very happy baby.  They joke about how big he is (since they typically deal with premature babies) and how alert he is (he is approaching a month old).  Fortunately, he's no longer the most critical baby in the unit like he was 4 weeks ago. 

The nurses asked if we would bring up a few outfits for them to put on Bennett to keep him warm.  Unfortunately, they aren't able to put his right arm in the outfits due to the PICC line but we still enjoy getting to see him wear the little gowns and sleepers we anticipated he would be able to wear at home.


The nurses always talk about how Bennett loves his Giraffe.

The nurses also make comments about how big Bennett's feet and long Bennett's toes are!  We notice how tiny Bennett's legs still are.  Cystic Fibrosis will probably keep Bennett a skinny kid for most of his life.
If Bennett stays well, we should have our little man home within a week!  We can't wait!

24 October 2009

Breck's Thoughts: This is why I didn't go into nursing.

I went into journalism first.  Then, I went into education.  I'm a journalist.  I'm a teacher.  I'm not a nurse...

Yesterday, I drove down to Temple by myself in order to meet with the ostomy nurse to learn how to care for Bennett's ostomy.  Brian is back in school full time and was unable to come with me.

On the way, I turned on our new David Crowder Band CD to the "Hurricane song" and began to get lost in my thoughts.

It wasn't too long before my thoughts turned toward my anxiety over Bennett - particularly over having to care for his medical needs...specifically his ostomy.

I was driving down to learn how to take care of this and yet I didn't want to.  I was going to - because I had to.  But not because I wanted to.

"What is it about his ostomy that has me so upset?" I wondered.  "Sure, I don't want to deal with future hospitalizations, chronic illness, middle of the night breathing treatments and traveling to Fort Worth for doctors appointments.  But I can handle those things.  Those things, I can handle.  It's the ileostomy that I cannot...but why?"

"It's gross", I answered myself back.  "And it's inconvenient.  I can handle a dirty diaper...but it's so 'not-normal' for a mother to change her newborn's ostomy bag...I don't want go to the bathroom of a restaurant when eating out with friends and deal with flushing out my baby's poop bag with syringes, replacing his medical tape or cleaning his G-tube...The way I envisioned experiencing caring for my newborn did not include this.  This isn't what I wanted..."

Suddenly I thought of a picture I took recently of tiny Bennett lying vunerably on this NICU bed, his colon fully exposed for everyone to see:

And within my heart I heard Bennett's little voice say to me:

"Momma, I know you don't want to deal with changing my ileostomy bag...  But don't you know that I, even more so, don't want to have one?...

"It's not *my* fault that as soon as I was born, I was rushed into surgery, poked and prodded, torn apart and not put together again.  I didn't choose this...

"I know you don't like this...but what about me?  What about the scar that I will carry all my life?  What about the day when my friends will tease me because I won't be able to run as fast as them because my CF makes it difficult for me to breathe?  What about the hospitalizations that I'm going to have to endure for the rest of my life or about the conversation I will have with you and Daddy when I realize I may die before you?

"Momma, if *you* don't want to care for me, who will?  If you don't embrace all of me, the cute parts as well as the gross and inconvenient parts, who will?  If you find something about me repulsive, don't you realize others will too?  

"Momma, I need you.  You're the only mother I have.  If you can't be tender and loving towards all of me, no one else will.  You're my mom."

My tears overwhelmed me.  My heart grew three sizes.  Bennett is my baby.  He's mine.  He's my responsibility.  I've been given a job to love him and care for him - and that means all of him.

Sure, I'll eventually get used to the inconvenience of ileostomy bags, breathing treatments and frequent trips to the hospital.  But if I can't embrace these things as the physical ways I am loving my son, then I am, in essence, rejecting him.

The sounds coming through my car radio infiltrated my thoughts.  "Oh, how He loves us...Oh, how He loves us...How He loves us all..."

There was no coincidence that these words were the ones playing in the background of my thoughts the entire time.  I realized that all the while I was accepting what it means to love Bennett, God was reminding me how much loves me.

And in this moment, God was showing me a picture of His love.  Just as I have chosen to love *all* of Bennett, God chooses to love me - even my gross and inconvenient parts.

I finished my drive to Temple.  I cheerfully began to learn how to care for Bennett's ostomy.  I would do so with a mother's tender care...

...because I love Bennett - even his ostomy bag.