Ben's Brigade Booster Site Launched!

Yesterday we launched the website for the Ben's Brigade t-shirts and hoodies. We have been blown away by the response so far. We have already surpassed the minimum requirement for a 4-week booster, and we did it within 24 HOURS!!! I cannot wait to see our army of supporters walking through the streets of Salt Lake with their shirts on.

I will admit, I was a little worried about this fundraising stuff. I am not comfortable asking people for help in any form, and asking people for money is that much harder. Then, on top of that, I started worrying about how to present our situation in such a way that fully expressed to people what we are facing with CF without exploiting Ben or sounding all "woe is me."

I want to make it *very* clear that we love our lives. We are happy, and Ben is healthy--now. However, CF is hard. Every day. We are blessed that Ben doesn't require hours of treatments every day like many with the disease and that right now he is just an awesome little guy who requires a few extra steps. But every time I read about what many other CF parents go through on a daily basis, I am smacked in the face with the reality that it may not always be like this. We have been fighting with our local pharmacies to get a vitamin that Ben needs, and it has been very frustrating. Ben has to get two RSV shots every month as well as regular blood draws to check liver and vitamin levels--and all this in addition to his regular baby vaccines. Right now he's fighting his first runny nose and developing a small cough. I try not to let it worry me more than usual, but I am still learning where the line is between "regular baby sick" and "CF baby sick." Breathing treatments twice a day are a physical battle almost every single time, because our squirmy little worm wants to *move*!

And then there's the harsh reality of that life expectancy. It's easy to ignore it when it seems so far away. And it's easy to ignore it when I look at that sweet angel face and see my perfect, gorgeous, loving son smiling back at me or leaning in for a snuggle. But sometimes, when I least expect it (like right after launching the t-shirt site, for example), it hits me and I stop breathing for a second. And THAT--that moment, that feeling, that stark, brutal, all-out FEAR that I feel--THAT is why this matters more than anything else. That is why I can ask for your money even though it makes me uncomfortable. Because this Momma isn't ready to sit back and accept a 41-year life expectancy. WE NEED A CURE!!

I will never find a way to express my gratitude for your support in a way that makes you feel what I feel every single time someone signs up for our team, or buys a shirt, or shares the link on Facebook. But know that I notice every single time, and I have to fight tears of gratitude every. single. time. Your support gives me strength. And hope.

Thank you.

Diagnosis Day - How It All Started

On May 17, 2013, we received a call from the pediatrician's office telling us that Baby Ben's newborn screening test results were abnormal. We went in to talk with them, and they told us he tested positive for cystic fibrosis. They reassured us that screening tests often have a high rate of false positive results and helped set us up for a diagnostic test at Loma Linda. We were scared and worried, but we felt good about our chances. Ben showed two different genetic mutations consistent with CF. Smokey and I had no idea whether we were carriers (it's a recessive gene, so both parents have to be carriers in order for a child to have the disease), and neither of our families has any known instance of CF. We set up the appointment for May 23.

We spent the entire day at the CF clinic at Loma Linda. We spoke with a nurse, a doctor, a respiratory therapist, and a social worker. Smokey and I had our blood drawn. Ben was examined and given a sweat test (the diagnostic test used to identify CF). Before the end of the day, the doctor gave us the news: our little Ben has cystic fibrosis.

What we didn't know, because the pediatrician's office are not genetic experts, is that for him to have two genes would greatly increase his odds of having the disease. With two gene mutations, there was only a very small possibility that they could both be on the same chromosome, which would have made him just a carrier. The sweat test results came back within a half hour. We won't get Smokey's and my blood test results for a couple of weeks, but they don't really matter at this point.

Cystic fibrosis causes mucus secretions in the lungs, making people with the disease more prone to respiratory illness and sometimes causing lung damage. Many people with CF also have pancreas issues that hinder the body's use of enzymes to break down food and help with nutrient absorption. We are awaiting lab results to tell us more about whether Ben is pancreas sufficient or pancreas insufficient. There are varying levels of CF--some patients have a milder case and don't exhibit all of the effects, while others need lung transplants because of damage to their lungs over time. As of right now, there is no cure for CF, but management of the disease has come a long way. Decades ago, kids diagnosed with CF didn't often see their 2nd birthdays, and now CF patients are living much longer. However, many of them still don't make it past their 30's or 40's.

Obviously we are devastated. The positive in all this is that he is a very healthy little boy who is gaining weight like a champion. At his appointment last week, he weighed 12 lbs 7 oz and was 23 inches long already. This is good news, because it most likely means his pancreas is functioning correctly.

We were sent home with a very intimidating amount of stuff. We have an inhaler/mask with albuterol; he needs treatments of that twice a day. We have a contraption that we have to use to do percussive physiotherapy on his chest and back for 20 minutes after each breathing treatment. We have vitamins that we have to give every day. We have enzymes that we have to give before every feeding, which we have to give in a little bit of applesauce so they don't dissolve before they reach his stomach, and I have to do a sweep of his mouth before he eats to make sure they are gone before I feed him, because if they get on his face or my skin, they will burn. Once we have the results from the stool sample, we will hopefully find out that he is absorbing everything fine on his own, in which case we can discontinue the vitamins and enzymes.

We will need to visit Loma Linda once a month for follow-up appointments. We now officially qualify for the Navy's Exceptional Family Member Services, which means we may not be allowed to stay at China Lake any longer. They like members of the EFM group to be closer to a facility that can serve their needs.

There are a lot of unknowns in our life right now. We have a lot of questions and fears and concerns. But what we do know is that our little angel son is going to have some challenges ahead of him in life. He must be something really special, and though I am intimidated by our new future, I look forward to finding out just how much sunshine he is going to continue to bring to our lives.

Ben's Birth Story

At 28 weeks, I noticed some bleeding, so Smokey and I headed for the hospital, where they hooked me up to the machines to monitor contractions and gave me IV fluids.  Then we had an ultrasound to make sure Baby was ok in there.  We stayed for a couple of hours at least, until they were satisfied that everything was ok.  Finally, I was discharged with instructions to stay on modified bed rest over the weekend (as a precaution).  I saw Dr. Stone the next week and she declared everything ok.

On Saturday morning, April 13, I decided to shower.  This was unusual because I typically shower in the evenings, but I just really felt like I needed a shower.  After getting out of the shower, combing my hair, and putting on my lotion, I was exhausted.  I decided to lie down on the bed for a minute to rest.  Smokey and Marley were cuddled up there watching one of Marley’s shows.  I had only been lying there for a moment when I felt a little feeling like I might have peed a little bit.  I rolled off the edge of the bed to quickly go to the bathroom when…whoosh!  My water broke, just like in the movies, and my pajama pants were soaked.  I shakily told Smokey what had happened, waddled to the bathroom, and called the hospital.  It was 9:30am.  They told me to come immediately.  We rushed to pack Marley’s bag and called everyone we knew, but no one was around to take her for us, so we packed her into the car with us and drove to the hospital, hoping someone would get back to us quickly.  Ben’s due date was April 28.

On the way to the hospital, I started really noticing the contractions.  They were pretty frequent and fairly painful already.  Once we got to L&D, they put my in a room, hooked me up to all the machines, and checked my progress.  I was only dilated to a 2.  (Fortunately, Mary called back around this time and came to pick up Marley.)  It hadn’t been long when suddenly I was being rolled onto my side and given an oxygen mask.  I started to feel scared, and I kept asking what was happening.  There were a lot of people doing things around me, and finally Dr. Battaglia leaned over me and told me that the baby’s heart rate was dropping.  Although it would pick up again, she was concerned he couldn’t wait for me to progress, and she decided I needed an emergency C-section.  I was devastated.  And terrified.  I started to cry and say “No.”  Smokey and the doctor talked to me and calmed me down, and I started to understand and accept that this was the best option.  Then things really got busy.  There were so many people in the room, and everyone was doing something to me.  The anesthesiologist came to ask me some questions and sign the consent form, they gave me a catheter (yep--*before* the spinal, which did not make me happy), and they wheeled me off.

In the OR, they were still monitoring the situation and deciding whether Smokey was going to be able to come in, so I was really scared about doing the spinal without him.  The nurse was amazing.  She held my hand, talked to me about the whole thing, and reassured me that I wasn’t being ridiculous.  Suddenly, there was a warm rush all down my lower body and legs, as though I had peed myself.  That was the medicine.  They laid me down and immediately starting rubbing an alcohol swab on my skin to test my numbness.  I did not trust that I could be that numb that quickly, and I was terrified I was going to feel it when they cut into me.  I don’t think I’m a very good patient.  Regardless, everything was underway.  Smokey was able to come in, Dr. Stone showed up to help, and they were off.  There were a scary couple of minutes after they took Benny out where we didn’t hear him crying.  As soon as I heard that sweet, sweet sound, all the fear and relief and emotion of the morning broke over me in sobbing waves.  It had been about two hours since my water had broken that morning.

They told me they had to take Ben to the nursery while they closed me up, so I told Smokey to go with him.  But first they brought him to me so I could snuggle and kiss his beautiful little head.  Then they whisked him off to get cleaned and checked.

The closing up process is long and hard.  You no longer have the stress, the anticipation, the adrenaline keeping you distracted from the fact that you can feel them digging around inside you and stretching your skin to cover things up.  I started to feel very sick, and I had sent Smokey to the nursery.  I asked a question, and the anesthesiologist immediately got up from what he was doing and came to my side.  His manner felt very caring and paternal, and I will forever be grateful to him for helping me through that part of the procedure.

My little Ben made quite the entrance into this world, and it has been a whirlwind ever since.  He is stubborn and sweet and funny and loving, and he is my little miracle.  I love him more than I can say.

Stats:  Ben Gibson Hawkins was born at 11:24am on Saturday, April 13, 2013.  He weighed 8 lbs. 11 oz.