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November 1, 2010

Galveston, Tx – University of Texas Medical Branch Hospital (UTMB)

At 4:50 PM our second child Harrison Everett Hudson was born. He weighed 8 lbs 14 oz and was 21 1/4″ long.  When my wife Melissa and I heard that he was only 8 lbs we were very excited. I remember telling her “great job babe!”. You see Melissa has type 1 diabetes and it is very common for the babies of mothers with type 1 diabetes to be large, our first son Maxwell was 12 lbs 1 oz when he was born.

Because of the insulin related issues these “sugar babies”, as the nurses like to call them often, over produce insulin to offset the sugar issues of the mother. The challenge of maintaining good sugar levels during pregnancy is one of the reasons these pregnancies are considered “high risk” and require lots of extra doctors visits and attention. So needless to say that after the dozens of ultra sounds, extensive lab work and many doctors visits we felt very cared for and had no reason to believe that anything was wrong with our baby Harrison.

Our primary concern with Harrison’s delivery was his ability to take his first breath. Because these “sugar babies” get so big they are often delivered a few weeks early. Well the lungs are one of the last things to fully develop for a baby, so our doctor’s focus was on Harrison’ ability to breath when he came into the world. I remember hearing the doctor say shortly after he was delivered that Harrison took his first breath. But I didn’t hear the loud cry I heard from Maxwell…..

Off To The NICU

Just like Maxwell Harrison was born via a c-section and just like Maxwell we expected Harrison to go directly to the NICU where they would monitor his sugar levels and make sure he did not crash. Another side affect of these “sugar babies” is that they over produce insulin to offset the mother not producing insulin, which results in extremely low and dangerous sugar levels when they are born. So after they briefly showed Harrison to us they said “dad go with baby while we fix mom up”.

So off I went with Harrison down the hall with the nurse. But before we got too far Harrison started turning blue. So the nurse rushed back into the O.R. and searched for an oxygen tank. I was left with Harrison in the hall with him not moving and turning blue. I did not think too much of it at the time because I just figured this was a simple side affect of the first few minutes of life.

The nurse returned and gave him some oxygen and he seemed find so we went off to have Harrison evaluated where we were sure they would send him over to the NICU for his sugars. And sure enough after a few minutes of checking on Harrison they said they would be admitting him to the NICU and a doctor would talk with us shortly.

It’s Not His Sugars

At this point I was not the least bit concerned. We expected Harrison to go to the NICU we had been through this with Maxwell and we knew it was a slight inconvenience but necessary. So I took some time to check on Melissa, call family members and share the good news.

Fast forward a few hours. Melissa and I are in her hospital room giving  Maxwell his big brother gift and organizing pictures on the computer for a quick video I was making to share with the world our proud new addition.

Then comes the doctor and nothing has ever been the same since. Without knowing what he said exactly when he left all I remember is crawling into the bed with Melissa and holding her as tight as I ever had. I was more scared than I had ever been before in my life. I will never forget the feeling of knowing that something was horribly wrong with Harrison and we did not know what to do.

It was like be blind sided by the worst possible news parents could ever hear short of their child dying. Our baby may never be okay was all we could think with fear running through us and tears running down our face.

“Your Son Cannot Swallow”

As the hours turned into a day we attached ourselves next to Harrison’s station in the NICU and began asking questions of every doctor or nurse we came in contact with. We were told that Harrison’s biggest problem was that he was not moving his muscles and could not swallow. Since he could not swallow the saliva was building up in his airway which would cause him to not be able to breath. This is why he turned blue in the hallway just after coming out.

The worst part of this news was that they did not have a clue as to what was causing his condition. They began running a series of tests to try and identify what was going on.

So for the next few weeks we cried, cried and cried some more between test results and doctors meetings. We did our best to maintain normalcy for Maxwell, but inside we were hiding a nightmare we did not want him to see or feel.

So Now We Live In The NICU

For the next two months Melissa and I took turns sitting bedside loving on Harrison, meeting with doctors and making one life defining decision after another. We desperately held on to every test result and word uttered from the doctors mouth, hoping to find answers and make our sweet baby Harrison okay.  One day we would think we were finding answers only for the next day’s results to drive us deep back into the living hell that was our new reality. There was no end in sight and we did not know what our future would hold. We simply gave 100% of our energy to Harrison and Maxwell each day just trying to make it through the day.

We were quickly becoming experts of navigating a NICU lifestyle. A life that we never new existed past a couple days, but once we were there 45 days and saw the dozens of other babies and families that were going through their own personal nightmare we soon caught glimpse of slight world of pain, fear and anxiety that mere words cannot describe.

As for our Harrison we spent every single day and night by his side. We did our best to have someone there holding him, touching him and loving him so that he would feel our energy and our love. We knew we could not fix him over night but we knew that in order for us to give him every possible opportunity to get the most out of his little body, and heal as much as possible, we had to believe that “anything is possible” and stand for him every minute of every day.

The Moment Everything Changed. The Moment Light Entered.

I was sitting in a meeting with a doctor who at this point I had become a little frustrated with. I don’t know exactly why, probably because I was in hell and she couldn’t fix it more than anything. But I am sitting there getting the latest update and listening to her try to convince me to let them give Harrison a tracheotomy when all the sudden it dawned on me that we were looking at this all wrong.

From the day of his birth until that moment almost 45 days later myself, my wife, our family, friends, doctors & nurses alike were all looking at Harrison and seeing a broken baby. We were all looking at him and seeing what was wrong with him, what was missing and what needed to be fixed. But in a flash of that moment I realized that instead of looking at what was wrong with him, let’s look at what is right with him and all the wonderful things that are Harrison and all the wonderful and beautiful things that make him a special living spirit.

So from that moment on I began to see Harrison for what he was, not what he was not. And with this new perspective came a light, a peace and a knowing that his life has purpose. He is a living spirit and that there is nothing wrong with him. He came into this world exactly as he was supposed to and he is living his life out exactly as he should. It is up to us to be able to see his beauty, his grace and his strength. It is up to us to be able to appreciate and enjoy all of the gifts he offers this world.

The World Is A Better Place Because Of Harrison

So with this new found perspective I began to find so many wonderful things that were happening in the world because of Harrison. I began to notice that hundreds of people form all over the world were sending prayers, thoughts of healing and love to him. I began to see that complete strangers cared for him like their own. Melissa and I received letters, emails and Facebook comments from people who were heartbroken for Harrison’s situation and extended love and compassion to our family. People began donating to a fund to help Harrison, to provide the space for him to get the most out of his life.

I began to see all the beautiful things that this world has to offer. I could only see them because Harrison made that possible. It was Harrison who made these beautiful events happen. It was Harrison who was shifting people to be their best and stand for a child they had never met. It was Harrison who in his fragile and “broken” body was making this world a better place. All of these things were happening because of Harrison, because of who he was not because he was “broken”, but yet because he was powerful living spirit radiating the pure beauty and innocence that babies allow us to see.

But you could only see it if you were willing to look past his “physical condition” and take inventory of how the world was responding.

Three Hospitals, Two States and Home

Over the next three months Harrison was transferred from UTMB in Galveston, TX to Texas Children’s Hospital in Houston, TX and finally to Joe DiMaggio Children’s Hospital in Hollywood, FL. He was put through every test possible, he had a surgery to install a g-tube so he could be feed without a feeding tube and he had a band wrapped around his stomach so he would not refulx fluid into his lungs.

We were convinced that he received the best medical treatment available and without any definitive answers we all agreed it was time to come home and see what happens. We did not know if he would live a week or 20 years we just knew we were luck to have him today.

So in February 2011 we brought Harrison home to our new home in Boynton Beach, FL. We had moved back to Florida where Melissa’s family lived and where we would have the support of our family and friends.

We had been trained by the nurses in Texas to suction Harrison’s airway and keep him alive. We learned how to understand the machines that were attached to him at all times to monition his oxygen, heart rate, etc. We quickly became his personal bedside nursers 24/7.

Even The Best Insurance Doesn’t Cover This Baby

We had the best insurance available to us when Harrison was born and it did a wonderful job caring for him during his stay and transfer between the three hospitals. But when he came home we were give 30 days of 8 hour nursing care at our home. Basically enough time for us to sleep 6 hours with one eye open & listening to the beeps and sounds of the monitors in case we had to rush in an help the nurses.

We trained the nurses, we taught them how to care for Harrison. They had never seen or cared for a baby like Harrison. Some got freaked out and never came back. Others saw his beauty and loved him like their own. All in all the nurses did their best and we were grateful for their support, but after 30 days our insurance said no more and we were left on our own to provide life sustaining care for Harrison 24 hours a day 7 days a week.

We had a blow up mattress that we would inflate each night and either Melissa or I would sleep by his bed awaiting the sound of the monitor that would tell us to suction Harrison’s airway so he could breath and continue living. If we failed to clear his airway he would begin to turn blue and things would get bad.

Medicaid Takes 45 days

Due to his fragile condition we were taking Harrison to a doctor’s visit almost every day of the week. Taking Harrison to the doctor meant loading up the oxygen tank, suctioning machine, monitors and all the other normal babies supplies and driving him in our mini van with one person driving while the other sat in the back monitoring his oxygen and suctioning him as necessary. These trips were mentally and physically exhausting for all three of us. It was hell.

During this 4 month journey with Harrison we had lost all of our savings and were obviously not able to work. The only income we had was the donations of family, friends and strangers. With no income and a child with critical needs we were approved for Medicaid, but the catch was there was a 45 day wait period, no exceptions.

We Did Not Have 45 Days

On April 4th 2011 after a couple days of being ill and sleeping almost all day Harrison’s heart rate elevated and within a couple hours he died in my arms in our home. Melissa had been up with him most of the night and all morning trying to get his heart rate down. After a couple hours of frustration and with no nurse in the house to help she handed Harrison to me and within a couple seconds he stopped breathing. It was like he did not want to die in her arms and cause her that pain.

We frantically gave him CPR, called 911 and had him rushed to the hospital that was 1/2 mile from our house. They worked on him and within an hour the doctor told us there was nothing they could do. Harrison was gone.

I Felt His Spirit Leave

The crazy part of that entire series of events was that when Melissa handed him to me and he passed away in my arms I knew he was gone. During the entire time trying to save him, riding to the hospital and sitting in the waiting room I knew he was gone. I felt him leave. I felt the void of his radiating, loving and powerful presence.

Some say they experience a peace when they watch a family member pass on. I felt a void. While his life here we not normal it was purposeful and he did move things. When he was gone I felt his absence, it was like the world suddenly got a little smaller.

Hope For Harrison To Hope From Harrison

Since we could not work during Harrison’s life we did one of the hardest things we had ever done, we put our ego aside and asked for help. We needed financial assistance to help keep our family alive. It was physically impossible to maintain a home without the help of others. Melissa and I had always worked and taken care of ourselves. Asking for help was at times humiliating, embarrassing and awful but we had no choice.

So we stared a non-profit organization called Hope For Harrison only to learn that non-profits cannot directly benefit an individual or family. One of the first of many lessons we have learned in the world of fundraising and helping others. So after Harrison passed away we filed a fictitious name application and amended to Hope From Harrison as our way of helping others in honor of our son’s legacy.

To this day I do my best to remember all the wonderful and beautiful things that Harrison created in this world and project that through Hope From Harrison.  Our mission at Hope From Harrison is “To provide resources, awareness and Hope for families of children with critical needs”.

Hope From Harrison’s mission is two fold: 

1. We raise money to provide relief and support for as many families of children with critical needs as we can each year.
2. We want to make the world a better place by projecting the love and compassion that Harrison showed us, back into our community one person at a time. Taking what we experienced from our loving support network and giving it back to others in our community. Not just the critically needy but everyone. Projecting love and compassion to everyone is how we feel we can honor Harrison and all the wonderful things he showed us during his time here.

Paying It Forward

As the days turn into years and our memories of Harrison’s time here begin to ever so slightly blur we are committed to keeping his purpose alive and well by paying it forward. Harrison’s journey took us through the darkest and loneliest moments of our lives and every day we know that there are hundreds if not thousands of families out there feeling this pain.

The last thing I said to Harrison during my eulogy at his funeral was a promise. I promised Harrison that I would make this world a better place because of him. So each year in between working  and raising our family Melissa and I dedicate many hours to fulfilling Hope From Harrison’s mission.  With the endless support of our amazing network of supporters we have been able to live this mission.

But our mission does not end. We have a vision of creating something that helps others and makes the world a better place for many years to come. Our next step in this journey is HopeFest, a one day festival and celebration where we aim to raise a lot of resources and awareness for other families of critically needy children. For this event to be a success we are once again setting our egos aside and asking for support from others who believe in our mission and want to help us make this world a better place.

If you feel the need to contribute we say thank you for your support. You can contribute one of three ways:

1. Donate to our Crowd Sourcing Campaign
2. Become a HopeFest Sponsor
3. Attend HopeFest on November 22, 2014 in Jupiter, Fl

With Love and Gratitude

Melissa and I are continually amazed and inspired by the world we live in today. While it’s easy to watch the news and see everything that is wrong with the world. It’s much more enjoyable to shift our perspective and notice all the things that are right with the world.

The love and support that we experience from being active with Hope From Harrison puts a smile on our face and it’s with much love and gratitude that we say thank you to everyone who has ever supported our cause.

Lots of Love,

Matt & Melissa Hudson

The Hope From Harrison Community