Just Breathe...

Have you ever stopped to think about your breathing?

For most of us, this is something we never have to contemplate.  We never have to worry whether or not the next breath we take is going to be effective enough to provide the oxygen that our bodies need.  This is such a blessing!

I've never really experienced the flu.  Growing up, if I came down with a sickness, it was usually either strep throat or a really bad sinus infection.  Several of these sinus infections have moved into my chest causing my breathing to be quite uncomfortable.  As much as I think of myself as being strong...when I get a sinus infection like that, I'm a whimp!  I gripe and complain and feel like I'm never going to be able to breathe again!  Just when I think the worst, the medicine kicks in.  I wake up one morning, and the weight is off of my chest.  I breathe in that crisp morning air, and the life is good again! 

I'm blessed.  I have healthy lungs, and I don't have to worry about daily medicines or therapy to help me clear my lungs.  

For many people, however, this is not the case.  Too many people go through their lives struggling for their next breath.  Too many people spend hours each day being diligent to  exercise and go through respiratory therapy in order to be healthy and avoid hospitalization.  Too many people struggle with Cystic Fibrosis.  

Because of this reality, I'm about to do something that I've spent most of my life DREADING AND AVOIDING!  I'm about to ask you for your financial support.  I've never been bothered by giving money to different causes, but the thought of asking for money has always terrified me!  When I was younger, as much as I enjoyed the fun assemblies with all the prizes for things like the Magazine Drive or Jump Rope for Heart or any other number of fundraisers, in reality the actual asking for support part really terrified me!  Maybe I just wasn't very good at "selling the product."  Maybe I just didn't WANT to ask.  Maybe I just didn't care enough.  

I'm asking now.  I'm asking for Harper.  I'm asking for all of the people who woke up this morning and faced Respiratory Therapy before drinking their morning coffee or brushing their teeth and take a handful of pills before every meal.  I'm asking for the people who are about to turn 30 knowing that the average life expectancy of a person with Cystic Fibrosis is 37 years old.  I'm asking for their families and children.  I'm asking for the researchers and scientists who work tirelessly day and night trying to find a cure.  I'm asking for the doctors and nurses who love their patients and want a cure found.  I'm asking for the moms and dads who are sitting in a small room right now waiting to hear whether or not their child might have CF and wondering what their future will look like as a family.  

I'm asking for me because I've finally found something that I'm grabs my passion and doesn't let go!  I'm asking because I have seen the positive things the Cystic Fibrosis Foundation has already done.  I'm asking because I want to see a cure found for Cystic Fibrosis in Harper's lifetime!  

There is a Great Strides walk being held in Murfreesboro, TN, on May 18th.  I will be there with my family and friends as part of "Harper's Hope."  I will be walking for Harper. I am walking to raise money so that a cure can be found.  

I'm asking you to help!  To the right of my blog page, you will see a button with the Great Strides CFF logo on it.  Please click on this button and give your support!  If you are in the Middle TN area and would like to be a part of our team and walk with us, scroll to the bottom of the page and join our team!  If you are unable to walk but would like to donate money, scroll to the bottom of the page (after looking at the adorable picture of my sweet Harper!) and click donate now!  

Any amount is greatly appreciated!  My goal right now is set for $600, but I would really LOVE to surpass that and raise $1000!  That is my unofficial goal! 
UPDATE:  We have surpassed $600!  Thank you for those that have already donated!  Let's make it to $1000!  It is now my official goal!!
 Please help me reach this goal before May!  

Thank you in advance...and I'll get back to normal blogposts from here on out!  ;)

Time's a Flyin! Part 3...So what now?

In my last post, I shared with you several of my emotions surrounding Harper's stay in the NICU and the possibility of her diagnosis.  What I didn't share were the "Silver Linings" Barry and I found.  We didn't always see it, but God was and still is blessing us daily.  

Here are three of these blessings:

1.  We live within an hour of one of the best CF clinics in the nation.  (I don't know if this is actually a proven fact, but I would put our medical support team up against any in the country!)  God was taking care of us!

2.  We have an incredible set of doctors, nurses, respiratory therapists, and nutritionists helping us take care of our baby girl!  Not only do they genuinely care about Harper's health, they care about how Barry and I are dealing with all of it!  As our doctor told us the news, he gave us some explanations and information.  He then took time to sit with us and answer questions.  As the daughter of a doctor, I understand how busy doctors are when they are in the office.  There are constantly people waiting to be seen, charts waiting to be signed, phone calls waiting to be returned, and prescriptions waiting to be sent.  On that morning, you would have thought we were the only people in the building and that there were no other issues waiting to have the doctor's attention.  He sat with us as long as we needed him.  He answered every question we had.  For the most part, I sat there silently holding Harper with tears slowly rolling down my face.  When he saw this, he addressed me and took time to comfort me and let me know it was okay to be upset.  He let me know he and the rest of the team are a phone call or email away any time of the day whenever we had questions.  He didn't leave our room until he knew that we would be okay.  In so many ways, he reminds me of the kind of doctor my dad is to his patients: one that cares about every aspect of his patients' well-being.  God was taking care of us!

3. We didn't see the blessing of having a week to let the possibility of CF sink in to our brains before actually hearing the diagnosis.  During the week of waiting, the uncertainty was exhausting and scary.  However, looking back over the situation, having that week was a blessing.  You see, when we met with our wonderful doctor for the first time, he gave us a great deal of information about Cystic Fibrosis.  He taught us about what the two defective genes cause the body to do.  He also talked to us about several of his patients that are thriving.  He gave us positive statistics to assure us this didn't have to be a horrible, awful thing.  (Don't get me wrong...CF is never good...but it isn't as bad as it used to be with medical advancements!)  Having that week gave us time to soak in all of the information.  When we went in a week later, hearing the diagnosis was hard, but it wasn't half as hard as it would have been if we had heard it the first week we went in for the sweat test!  God was taking care of us!

So what now?  

Because we had that week to chew on the possibility, we were able to take the news and process it a little better with the doctor that morning.  We were able to say, "This is not what we wanted, but it is what it is.  So what now?" To close out the story of our journey over the last 6 months, I thought I'd share a bit of our routine along with some of the ways Harper's care has progressed.  

At 3 weeks old, Harper began an enzyme treatment.  Because the Cystic affects her pancreas, Harper's body is unable to break down and absorb the nutrients from the food as efficiently as you or I.  To counteract this, we give Harper enzymes.  At 3 weeks old, we started her on 1/2 a capsule of enzymes before every feeding.  As she grows, we increase the amount by 1/2 a capsule to accommodate her growth.  Over the course of 5 months, Harper's enzymes have increased from 1/2 capsule every meal to 3 1/2 capsules!  It is amazing to me how she works the little beads down!  

This picture is a bit dark, but the canister at the top shows the amount of enzymes Harper began taking, 1/2 capsule.  The bottom canister shows the amount she is currently taking, 3 1/2 capsules.  There are about 18-20 little pellets in each capsule.  We thought 10 pellets was a lot for her when she first began this regimen!  Boy were we wrong!  She now takes down around 70 pellets like a champ!  Wow! 

Not long after beginning enzymes, the nutritionist started Harper on a higher calorie diet.  For most of her daily feedings, we now combine pumped milk with high calorie preemie formula and salt to help her gain weight.  CF patients often have to have a great deal more calories per day simply to maintain their weight compared to a normal, healthy person.

A little before Harper turned 3 months old, we started respiratory therapy.  For now, this consists of us breaking the thick, sticky mucous in her lungs free by patting 10 spots around her chest and back for about 30 minutes in the morning and 30 minutes in the evening.  Most days Harper does well with this routine.  It is really all in the timing, though!  If she is already tired or hungry, she gets a bit cranky and it makes for a very long half hour!  Baby Einstein works wonders for us these days!  

These are the percussion instruments.  They are made of a very soft rubber that vibrates Harper's lungs to break the mucous loose.  It feels like a massage on her back!

This week the doctor asked us to start another step to her respiratory therapy.  Before chest percussions, we now giver her Albuterol through a nebulizer.  So far, she is handling this process well.  

We are also a part of a nutritional study.  Before each visit, we journal everything Harper eats for 3 days.  We also log information about her diapers, her cough, her pain, and her mood.  We also carry in a stool sample and a urine sample.  That's probably the best part of this study!  (If you could hear me say that last sentence out loud, you would hear the sarcasm dripping out of every word!)  

Harper has come such a long way since the tiny 5 lb baby we first took to Vanderbilt for a sweat test!  

She has almost tripled her weight, and the doctors are thrilled with her progress!  We are in the groove of her treatments, and the doctors are adding new steps as they see fit.  We also have been able to cut back on our trips to Vanderbilt to every other month!  That's a huge jump for us!  

The biggest blessing of all is that beautiful smiling baby!  

God is taking care of us on a daily basis.  We see His love in different ways every day.  Today, we saw it in the love of our church family and they help they have provided to us.  We are loved, and we are blessed!  

We are still unable to worship as a family of 3 with our Highland family, but we are growing closer each day!  I'm so eagerly awaiting that day!  

Highland people:  wash your hands and get plenty of Vitamin C!  No more getting the Flu and colds and Strep allowed!  Harper needs to make her debut to church soon!