THIS IS THE SPEECH I GAVE AT THE BENEFIT DINNER. I DON'T WANT TO LOSE THE MEMORIES OR THE FEELINGS SO I DECIDED TO POST IT RIGHT HERE WHERE I PRESERVE THE MOMENTS OF OUR LIFE. IF YOU MISSED THE BENEFIT- HERE'S WHAT I HAD TO SAY:)
For those of you who do not know me, my name is Lindsay Clark and I am the mother of a little boy named, Easton, who spent the first months of his life in Hurley’s Neonatal Intensive Care Unit. I first want to start out by welcoming you to the first annual Team Easton Gives Back event and to thank you from the bottom of my heart for choosing to be here tonight. This night is incredibly important to our family as this is one small way of trying to again say thank you for saving our son.
My experience with Hurley’s NICU changed the entire course of my life. Having a baby that you aren’t sure will survive is excruciating. There are no words to explain what that feels like. There is no preparation for this experience. I could spend my time asking the “why us” questions but that isn’t what matters. What matters is that Easton is alive. Easton fought hard. He could have easily succumbed to his illness on many occasions but he didn’t. You know why he didn’t? Because, he had a team of doctors and nurses (and family) fighting just as hard right next to him. The staff at Hurley’s NICU cared about our baby. He was not just a patient number. He was a human being deserving of a chance at life and that is exactly how they treated him. They NEVER gave up on him. They believed in him as much as we did. One of the doctors even pulled me aside as I stood with tears in my eyes next to him and said, “You know, we love him too.” I will never forget that. Ever. My point to all this is not to rehash the near tragedy of our last year but to explain to you all how fantastic this place is and to invite you to share in my attempt to support this unit.
Team Easton Gives Back is my family’s way of trying to pay it forward in the only way we can. We will never be able to repay the people that took care of and saved our baby but we can try to help make it possible that they have the things they need to continue to take care of other babies. We have decided to come together annually as a family and put on a benefit for the Hurley NICU.
I’d like to give a little background about our story because there are quite a few people here that I do not personally know. Matthew and I have 3 children. Our first two, Carter and Paige were born perfectly healthy. We niavely expected our third child to be as well. Unfortunatly that was not the case. Easton developed PPHN shortly after birth which is a life threatening condition for newborns. In short, it basically means that his circulatory system did not switch over after he was born and he was unable to properly oxygenate his body. This is not very common and only occurs in about one in every thousand births. His life was literally touch and go for the first two weeks. We were not able to hold him for 16 days and many of those days we could not even touch him. We had to whisper around his incubator because he was extremely sensitive to noise. It was painful. Each day seemed to have ups and downs but the downs were almost always outweighing the ups. He was barely hanging on. I’m going to share a very personal day with you that is not easy for me to talk about but I need you to understand how sick my baby was in order for you to realize what an amazing team of doctors, nurses and respiratory therapists there are in that NICU at Hurley. You have to know where we came from when you see this sweet boy here tonight. May 21, 2011 will forever be the most difficult day of my life thus far. Easton was three days old and having a really bad day. His numbers were terrible all day and it seemed like he deteriorated by the second. I was paralyzed by fear. I knew I was going to lose my baby but I wasn’t sure what to do about it. I wasn’t sure how to act. I couldn’t leave the room but I had a really hard time watching. There were so many people surrounding his bed and you learn very quickly that the more people around the bed- the worse off you are. Parts of the day are crystal clear and parts of it are hazey but there is an entire scene I can play in my head like a scene from a movie and it starts around 6:00pm. Easton wasn’t doing well on a conventional ventilator so they were attempting to switch him to a high frequency ventilator and that didn’t go well either. Matt was sitting in the blue chair staring at the chaos and I was standing directly in front of him watching his face and understanding everything that was happening just by the look in his eye. I turned quickly only to catch a glimpse of my gray baby lying limp being bagged and I heard the conversation going on very clearly. The doctor said that he had 15 minutes to turn around or they were air lifting him to Detroit Childrens. The problem was that he didn’t think he would survive the flight. It was at that time that everything stood still in my world. I looked at Matt ,the eternal optimist, and asked if I should call the family up to the hospital and with tears in his eyes he nodded his head yes. My sister was in the other room and I very quietly walked in and said call the family and pack up this room. This is it. Something happened in the 30 minutes it took for the waiting room to fill with our family. Prayers were answered. Doctors and nurses efforts started to work and that baby boy fought the biggest battle any of us will ever fight and he turned himself around. He stabilized and he did not leave this world. Walking into the waiting room to see our family waiting for the horrific news was a devastating sight. I was speechless and Matt had to find the words to explain that Easton was still with us. New bonds were formed in this family in that instant. This isn’t just something that happened to Matt and I . This happened to every member of our family. This was a life changing day. New perspectives were formed on every level. I don’t think anyone in that room will ever be exactly the same again. I believe in God and a higher power but I know that Easton is not only alive today because of God, but because of the actions of the people in that NICU. The next day we were obvioulsy traumatized and requested a meeting with the director, Dr. Rahman. We were fumbling and didn’t know what to do. All we wanted was for this baby to live and we needed someone to tell us how this was going to happen. We thought possibly we should transfer him to someplace else not even knowing what that would entail or how that would help. We just knew that we couldn’t have another day like the previous. Dr. Rahman could see we were panicked and he very confidently told us that he was handling this. He had experience with PPHN and he had a plan. He couldn’t promise it would work but he was going to give it his all. At that time we had no other choice but to have faith in this man that we didn’t even know and put the life of our son in his hands. He did not disappoint. Dr. Rahman was next to Easton’s bed almost all the time for the next few days. He was there on his days off, he was there early in the morning and he was there late at night. He was on the phone when he wasn’t present. The dedication to saving our baby was incredible. And it worked. The next several days had many fragile and scary moments. There were so many bumps in the road but the care he received was without a doubt exceptional on every level. This is just our story but these people do this every single day. They are heroes and they deserve all the credit in the world.
There are so many wonderful and fantastic things that Hurley’s Neonatal Intensive Care Unit has to offer. I’m going to have Dr. Rahman who is the director of the unit and who also personally took care of Easton speak and give you more information about what they do. But first, I want to talk to you about who these people really are. They are more than just doctors and nurses doing a job. These are some of the most compassionate, caring and comforting people you will ever meet. It’s so difficult to be a parent of a very sick baby and not only not be able to help them but to not even be able to touch them. Each and every doctor took time to explain to us to the best of their ability what was happening...Even if it meant using terms like “Sponge Bob Square Heart.” They were able to make us understand what was happening but without ever misleading us or giving us false hope. I am not sure I appreciated that then, but I certainly do now looking back. In that situation you just want to hear that everything will be ok. Nobody told us that. I remember never asking the question, “Is he going to die?”, but I remember really wanting to know. I spent a lot of time asking around that question. I was given honest answers and often a phrase I’ll never forget which was “we are not out of the woods yet.” It’s funny how such a common phrase turned into the most important words in my life. Most every conversation ended with that phrase and I learned to appreciate that saying because it sort of meant that at least we were still in some kind of woods. May 30, 2011 was the first day of hope for me. For starters, It was my son, Carter’s, 4th birthday and also the day I walked into find Dr. Rahman putting in a chest tube. I immediately thought, “Here we go again,” and somehow found the courage to ask for the very first time if we would ever be out of the woods. He looked at me and smiled. He said “We aren’t out of the woods but we can sort of see the exit so we aren’t quite as deep.” I thought, I’ll take it! This was music to my ears and just what I needed to be able to head home for a quick 2 hour super hero party for my other son. Talk about a juggling act. There are so many other things that happened with so many amazing people. Just a few examples would be: Dr. Kazem. We love you. Easton loves you. Easton never behaved and was quickly named “Trouble” by Dr. K but for some reason whenever he was working, Easton behaved. I don’t know if it was because he was always threatening him or if he could just feel the positivity this man exudes. Dr. Kazem, you brought us great comfort. You never mislead us but you always made us feel hopeful. We loved hearing about how much your daughters wedding was costing you and how your wife keeps you in line. You were able to make us smile on some of our darkest days. We needed that. Dr. Chan never sugar coats anything. He was so determined to figure out what was wrong in those first few days and I appreciate him holding nothing back... even if I was terrified of what he was going to say! Roberta- Our first primary. She was there from the start and I always felt comfortable when she had my boy. She had to put up with me asking to hold him multiple times the first few days and she was there when they first put him on the ventilator and had to drag me out of the waiting room bathroom where I was hiding and nearly losing my mind. You were always extremely honest with us and most importantly, I felt like you were mothering my son when I couldn’t. I came in one day to find warmers on his feet bc you thought he was cold and cotton rolled in his hands because his hands were getting stiff from being in a paralyzed state. Even though he couldn’t breathe- you were worried about him being comfortable and that is a Mother’s love. Thank You. Iris, you were the only reason I ever closed my eyes at night. I trusted you would care for him and when it came time to challenge him by lowering settings- you weren’t scared. You knew what he could handle and you pushed him. I would call Iris every night and ask the same questions. I think my favorite night was when she actually didn’t come to the phone but told the person on the line to tell me that he was fine and not to interrupt their bonding. As a result, Iris, I would like you to know that he is the only one of my three children that still wakes up at almost 1 year old in the night. I firmly believe this is your fault for spoiling him in the wee hours of the night and he is still looking for you bt 2 and 3 am. Rhonda, you are always soft spoken, incredibly sweet and such a lovely human being to be around. There is a calmness in the air when you are working. I remember one afternoon when everything was going smooth and all of a sudden Easton’s title volume started dropping. Matt and I were just hanging out in our usual spot a few feet away from the bed. You were so calm and collected that we would never have known anything was wrong except that when Cheryl came over and started bagging him- it was kind of a give away. Thanks for taking such good care of my boy. Jessica, I know you were just doing your orientation when you took care of Easton. I will always remember you were the one who attempted his first feeding even if it was through a feeding tube. As a new mother yourself- I’m sure you realize how important that moment was...even if he did reject it. I’m so glad he didn’t scare you away and I apologize on his behalf for you always having to change the tubing on his obnoxious IV pole. We are so glad your new son can benefit from some of Easy’s hand me downs:) Dr. Rahman: Thank you. Thank you for having the knowledge, confidence, and for not being afraid of taking risks. We really feel like you took control and made it your personal mission to not let this baby die. There are no words strong enough but please know we are forever grateful. We owe you the world. These are just a handful of examples of the people behind the lclosed doors of Hurley’s Neonatal Intensive Care Unit. This is their job. They do this every, single, day. (Please stand if you work in the NICU and lets applaud this amazing job.)
There are thousands of stories from other families that have similar experiences. We are just one example. We are here tonight to raise awareness of this unit. Thank you for your support tonight and please continue to donate to Hurley’s Neonatal Intensive Care Unit as the evening continues.
**Donations are accepted 365 days a year. Please contact Lindsay for details. Lindsaymatlock@aol.com**