Savannah’s Heart Fundraiser at Hawg Heaven

Carol Wills and the incredible folks at Hawg Heaven have graciously agreed to do another fundraiser for Savannah. They did a huge fundraiser for us back in May 2014, and this year they are trying to make it even bigger!

With Savannah’s first open heart surgery next month, the costs are mounting! This fundraiser is a way for just about everyone to do something they do already: eat! The proceeds from the entire day are being donated to Savannah’s Heart Fund.

Despite a dreary and cool weather forecast, I’d invite you to come out and enjoy some great food! If nothing else, swing through and pick up some food to go.

If you’re not sure where Hawg Heaven is located, you can find them on Defenbaugh between Washington and Highland Park. Just go to the stop sign at Webster, and they’re right there on the corner. You can check out this Google Map if you need help.

Feel free to invite your friends and family and share the flyer. We hope to have a huge turnout, and turn on as many people as possible to the amazing food that Hawg Heaven has to offer!

This entry was posted in Dad.

Boston Bound

In recent weeks and months, we’ve been fairly quiet on social media and on our blog with regard to Savannah’s health. In part, there thankfully hasn’t been a lot to share. We’ve also been trying to just enjoy every moment of life, not thinking about Savannah’s surgery. But all things considered, Savannah is doing very well. Our mission since returning from Boston at the beginning of March has been to get her bigger for surgery. I think we’ve accomplished that mission! Savannah is now pushing 11 kilograms. That’s about 24 pounds for you normal folks.

Unfortunately, we are indeed Boston bound. Savannah will have open heart surgery at Boston Children’s Hospital on Monday, May 18th. For those of you who don’t know, my daughter, Savannah, has an extremely rare collection of birth defects known as Heterotaxy Syndrome. Simply, this is where a baby’s internal organs don’t form in the proper place. This can then lead to the organ not forming properly or just not forming at all. Within Savannah, her spleen, liver, lungs, intestines, kidneys, ears, spinal cord, trachea and heart are all impacted by her Heterotaxy.

The most grave concern right now is Savannah’s heart; thus the name of the blog and the upcoming heart surgery. Savannah’s heart is on the right side of her body, which is the “wrong” side from you normal folks. Other than making surgery a little bit harder, her heart placement isn’t a huge deal. That’s where the good Lord put it, so that’s where it will be! The problems lie more in her heart’s internal structure and the external plumbing. Right now, Savannah has a large hole in between the pumping chambers of her heart. This allows all the oxygen-rich and oxygen-deficient blood to mix inside her heart. It’s rather inefficient!

The normal human heart has two main pumping chambers called ventricles. By God’s grace, Savannah was born with both ventricles in proportional size. When we first learned of Savannah’s heart issues in utero, her left ventricle was hypoplastic or underdeveloped. The miraculous growth and development of her left ventricle meant that she is now a candidate for this surgery called a “bivent.”

“Bi” refers to two, “vent” refers to ventricles. Two ventricles. So what, right? Well in the pediatric cardiology world, this is an important distinction. I’ll explain why in a moment. First, it is important to understand the separate jobs of the two ventricles. The left ventricle pumps oxygen rich blood to the aorta, which carries the blood to the rest of the body through many arteries. The right ventricle pumps the oxygen deficient blood back to the lungs for more oxygen by way of the pulmonary artery. So while they both pump blood, the oxygen content and destination of the blood are very different.

So why do they call this surgery the “bivent?” This name is a specific distinction over those congenital heart disease patients that are single ventricle. This is where heart surgeons take the job of the right ventricle away from the heart and let the blood that’s “coming back for oxygen” flow directly to the lungs. The heart doesn’t pump it there anymore, it just flows there passively. This process is usually done over a series of three open heart surgeries. While three surgeries sounds scary and unfavorable, this type of surgical repair has been around for decades. It’s honestly an “easier” and safer option for a lot of these babies with complex congenital heart disease. Unfortunately, it can lead to many more problems later in life. This is what we’re hoping to minimize by doing the riskier, more involved “bivent” repair now.

The basic gist is: Savannah has two healthy ventricles, so let’s use them! After much deliberation with cardiologists and cardiac surgeons in both Cincinnati and Boston, we’ve made the decision to pursue the “bivent.” This surgery seeks to restore the separation between Savannah’s two ventricles. As you might imagine, it’s far more complicated than just building the wall back up between the two ventricles. Savannah has some major “plumbing” problems involving her valves and those two great arteries – aorta and pulmonary artery. Both of Savannah’s great arteries come off of her right ventricle. This is called Double Outlet Right Ventricle (DORV). Now if you’re still with me from a few paragraphs ago, you’re thinking: “Isn’t the aorta supposed to come off the left ventricle?” Why yes, yes it is! So how is that fixed? There are a couple of options, but it’s ultimately up to Savannah’s surgeon to come up with the best plan. He might completely move the aorta, put a conduit (small tubing) in to carry the blood from the left ventricle to where the aorta is now, baffle it, implement some combination of these, or heaven only knows what else he can do!

Needless to say, there are several layers to this already complicated and risky surgery! The complexity and inherent risk are ultimately the factors that pushed us toward Boston Children’s Hospital. First, BCH is ranked by U.S. News and World Report as the number one hospital in the country for pediatric cardiology. This caught our attention. Secondly, BCH sees a high volume of Heterotaxy cases, to the point that they have actually published their Heterotaxy patient statistics. I’ve yet to see any other center do this. Third, BCH has a whole program dedicated to the “bivent.” They call it the Complex Biventricular Repair Program. After all, BCH really pioneered this type of repair. Now when I refer to Boston Children’s Hospital here, I’m really referring to their Chief of Cardiac Surgery, Dr. Pedro del Nido, and his fellow cardiac surgeon, Dr. Sitaram Emani.

After we learned of Savannah’s complex heart defects, we began extensively researching treatment options. We eventually found Boston’s Bivent repair program and Dr. del Nido. At that point, Lori reached out to him to ask if he would take Savannah on as a patient. He agreed. Once Savannah was born and we really got to see what she had going on in there, even our Cincinnati cardiologist recommended Boston as Savannah’s best repair option. So, here we are. Five short weeks away from the scariest day of my life!

I’m dreading it. Completely do not want to go! Intellectually, I know this is what Savannah needs. Emotionally, I don’t want to put Savannah through this. I don’t want Lori to have to go through this either. This whole situation is just scary. The life of my little girl is sitting in the balance here! This is not okay.

But beyond the emotional turmoil this brings, there are also some practical issues that go along with this surgery. I’ll be taking unpaid leave from work to go to Boston. Lori won’t be working either obviously. We do have a place to stay in Boston, and it’s $30 per night. While this truly is a huge bargain for Boston, Massachusetts, this expense will add up quickly. Likewise, air travel just to get there and back will be extremely expensive. Add in food, other basic essentials, and lost wages, and we’re looking at thousands upon thousands of dollars in expenses over the next few months. Now this is without even considering the medical costs! You don’t want to know how big those are.

If you’d like, there are several ways that you can help. First, pray. Pray for Savannah, her medical team, and us as well. Secondly, eat. This coming Saturday, April 25th, it will be Savannah’s Day at Hawg Heaven in Kokomo. Carol Wills and her staff so graciously helped us last spring with a similar event, and they’ve once again agreed to do the same this year! Hawg Heaven makes amazingly delicious food, so please come out next Saturday to Hawg Heaven at 425 Defenbaugh St in Kokomo.

Lastly, we will certainly accept cash or check donations for Savannah’s Heart Fund. Donations can be sent to Savannah’s Heart Fund, 120 N Dixon Road #314, Kokomo, IN 46901. They can also be made at any First Farmers Bank & Trust branch. You’ll just need to mention my name, Ryan Hensler, and that the donation is for Savannah’s Heart Fund. It may just be easier to click on the YouCaring widget at the top right of this page to make a donation online. Every bit helps, and we are so very thankful for everyone who has helped Savannah through this journey!

A Gift for Savannah’s Heart

Throughout much of this year, our blog posting discipline has been lax. This is not because important events and milestones have not happened, it’s just that life tends to get in the way of writing most days.  In recent weeks, we celebrated Savannah’s big birthday. Yep, our Heterotaxy Hero turned 1. Also, an exploratory heart cath on October 16th gave us a big reason to wait on her heart surgery.  Savannah’s heart function is good, her lungs are protected, and she is slowly but surely growing.  This meant Thanksgiving at home and now Christmas too!  This is such a huge blessing, but alas Savannah’s surgery will be here soon enough.  Our new date range is late March or early April 2015.

From the outside, it’s hard to tell that there’s really anything wrong with Savannah.  Beyond being small for her age, she is quite healthy.  Frankly, it’s fairly miraculous when you consider at her Heterotaxy diagnosis. From the cardiac aspect alone, the list is quite overwhelming:

  • Bilateral Superior Vena Cavas
  • Complete Atrioventricular Canal 
  • Congenital Pulmonary Valve Stenosis
  • Dextrocardia
  • Double Outlet Right Ventricle
  • Malposed Great Arteries
  • Patent Ductus Arteriosus

As we explain Savannah’s heart conditions and share our journey towards Boston, we get many of the sames questions.  The first: Why Boston?  The answer is simple, yet multifaceted. We believe that Children’s Hospital in Boston is the best place to have Savannah’s surgery.  When we first started looking at pediatric heart programs before Savannah was born, we quickly narrowed our list based on input from various sources. We asked other heterotaxy families where they went, we reviewed guides like U.S. News and World Report, and spent hours on Google. When dealing with this kind of cardiac repair, it’s more than just selecting a hospital.  You’re selecting a surgeon.  Even before Savannah’s birth, we reached out to the Chief of Cardiac Surgery at Boston Children’s Hospital, Dr. Pedro del Nido.  Dr. del Nido agreed then to take Savannah on as a surgical patient.  Dr. del Nido has nearly 30 years experience in pediatric cardiology.  He also has an extensive record of repairing complex hearts like Savannah’s.

One of the other top questions we receive is: What are they going to do when you take Savannah to Boston for surgery? This is a question that we can vaguely answer.  The goal is to get Savannah to where her heart will have 4 separate chambers that can do the job God gave them – a biventricular heart.  Right now all the oxygen-rich and oxygen-deficient blood is mixing together within her heart.  Dr. del Nido will need to repair her complete AV canal defect to separate the oxygen-rich and oxygen-deficit pumping chambers and valves.  Then he’ll need to address her double outlet right ventricle/malposed great arteries, pulmonary valve stenosis, bilateral superior vena cavas, and probably remove her ductus arteriosus.  Can all this be done in one surgery?  We don’t know, but it would be awesome if it could.  How will all of these issues be addressed?  We don’t know.  When will you have the plan together?  Much of the plan we’re already making, the finer details will be decided in the days before her surgery, and some decisions will likely be made once Dr. del Nido gets Savannah into the operating room. This is one of the main reasons we need to have an experienced surgeon with a knowledgeable and advanced support team along side him to make this repair a success for Savannah.

Beyond the stress of having a child that needs such a complicated surgery, we have the added stress of going to Boston, Massachusetts to have that surgery.  Frankly, this is going to be a very expensive endeavour. Despite working two jobs and running my own company alongside Lori’s thirty-one bag sales, we don’t make enough money to cover all the upcoming costs ourselves.  In all honestly, we hoped to be much farther along in this fundraising journey, but there were several fundraisers that were promised that never actually happened. When we look at our budget and upcoming expenses, we are needing to raise $25,000 between now and March 15, 2015.  Yes, that is a lot of money, at least by our economics.  Thankfully, we’re leaving this to God’s economics.  God knows the need, and we’re trusting God to provide.  In fact, we don’t have any plans outlining how to raise this much money.  That’s why we’re asking for your help.  We know that so many people are ready and willing to help, they simply don’t know of the need.

If you’d like to donate, please visit our donation page.  If you’d like to help Savannah with some kind of fundraiser, please contact us by commenting below or find us on facebook.

R.I.P. Sweet Noah

With heterotaxy being a fairly rare disease, those affected by it tend to stay fairly well connected. Especially with the advent of social media, we can share our life experiences across various continents as they happen. While the support and shared stories are encouraging and resourceful, the bitter end of a life due to heterotaxy is very real for all of us.

I grieve for the death of little Noah. I recognize that Noah is in no more pain and can finally be at rest, but I grieve for his Mom, Amber, and his big sister. I can’t imagine having to bury my own child. The thought stops me cold in my tracks every time it crosses my mind. Even while Savannah is still very much alive and mostly well, the severity of her diagnosis is never far away.

Honestly, I’m not afraid of death – not mine or Savannah’s. It’s just that as a father, I grieve for the pain that I know my sweet girl will endure. I grieve at the very real thought of living life without my little girl. It’s so amazing how one little child can change your life forever. I think every person has that parental paradigm shift when they lay eyes on their own child for the first time.

I weep at the thought of losing my sweet girl, as the statistics tell me that I will out live my daughter. I never fully understood King David’s words in Psalm 23 until now. I now know what it’s like to walk through the valley of the shadow of death. I feel like in many ways, Lori and I have been walking through this valley for the past year. Regardless of how much hope or wishful thinking we can muster, the fact is: this has been and will continue to be a very long and lonely road.

Frankly, my spine surgery has made life harder, physically and emotionally. I can’t get around very well without being in significant pain. After three weeks of taking narcotic pain killers every four hours, as prescribed, I stopped taking them on Friday night. Now I’m going through some opioid withdrawal. While it’s very mild, what symptoms I do have are not fun! Likewise, I still can’t drive. I can’t go back to work. All I can really do is lay in bed. I want to be able to get up, be pain free, go to work, and provide for my family!

It’s a tough pill to swallow knowing that I don’t make enough money to pay for my family’s needs. Savannah’s care and upcoming surgery is going to have a significant price tag. Lodging, travel, and food alone will likely be in excess of five grand. Obviously, we’re not including any medical expenses in that, as they will be in the hundreds of thousands of dollars. While I know very few people that could afford to pull this off on their own, I still feel like a failure. It’s as if the number one job that I’m supposed to do in life can’t be done. I know Lori shares this struggle. She spends so much time taking care of Savannah and now me too, that she can’t keep her jewelry business going.

Life is so very hard right now, and Noah’s passing is another reminder of the dark and lonely valley in which we walk. I’d ask for your continued thoughts and prayers for Noah’s family and for us as well. By and by, all I can do is cling to the promises that God has given to us.

Psalm 23:6
Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.