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!