Today is your 6th birthday! That means that I have now had the pleasure of being your Mom for five whole years. I wanted to sit down and write you a letter on this day because although you have heard your story a million times throughout your life, I don’t think I have ever told it directly to you. I never want to forget what these last five years have been like for me and I want you to know exactly how special and what a miracle you are. I know you wont read this letter today and possibly not even for a few years but this letter is from me to you and will be given to you as soon as you can read it for yourself and when I’m sure you will understand the content. Your story is only five years old so far, but it is extraordinary. Easy E, here is your story.
Every single detail to your story is a little different than all the rest. For beginners, I was surprised when I found out I was pregnant for you. I was always planning to have more children but just not so soon! When I did find out I was pregnant for you, I took seven tests. Why so many? Every other test I took had a different result, four were negative and three were positive. I had no idea what was happening and if this was real or not! Little did I know this was only the first of the “Adventures with Easy!” When we finally got the blood test results that did show you were in fact on your way, we were not just surprised- we were ecstatic! Our little family was growing. When I was just 19 weeks pregnant for you, Mom and Dad went to a Kid Rock concert that you must not have enjoyed because it put me right into labor. I didn’t go to the doctor right away but the next morning I had a bad feeling that the contractions I was feeling were real. Sadly, I was right. At less than half way through your pregnancy I was ordered to strict bedrest, weekly progesterone shots and stress tests and steroid shots for your lungs on four different occasions. I was admitted to the hospital in early labor at least five times and even spent my 30th Birthday in Hurley trying to keep you safe. This was a really hard time for us because Carter and Paige were only one and three years old and I wasn’t able to care for them at all from my bed or the hospital. I knew in my heart that you needed me to follow doctors orders and I did everything in my power to keep you safe inside of me for as long as possible. While you were growing inside me, we spent a lot of time alone as Daddy took care of your siblings. I talked to you all the time and I feel like we made some “deals” about you doing your part and me doing mine. I was bonded and connected to you well before I ever saw your face. I knew you and my instinct that you knew me was confirmed later (and I’ll tell you how later in this letter.)
|Before the storm...|
There were so many trips to Hurley with contractions and labor but we were so fortunate that by the Grace of God we made it to 36 weeks. At this point, you were so low and ready to come out that I was in excruciating pain that couldn’t be tolerated without medication and your heart rate was starting to show some signs of decelerations during the ever present contractions. The decision was made that I could get out of bed and deliver you. The morning you were to be born was full of gratitude and relief that you had “made it.” You were supposed to be a decent size, we were out of the major danger zones where we didn’t think you would need support to breathe. Your sister was also born at 36 weeks with no complications so in our hearts and minds- we knew you were good to go! Oh , Easton, how I wish that could have been true for you. The labor for you was so quick and the delivery even quicker. It was only a few hours from start to finish. As soon as you were born, all the weight of the world was lifted. I was so happy you had arrived safely after months of fear. I loved you so much. When you are first born, the nurses give you scores on how healthy you are. Yours were perfect. It was one magic moment after the next. All of our family was there and after I held you, I let them all pass you around and see for themselves what a perfect miracle you were. After only about 30 minutes, I heard you making this little noise. Everyone in the room thought it sounded like you were cooing and was talking about how sweet it was. I instantly knew that you were not OK. I knew right then and there in that moment with your little sounds that my world was about to rock. I begged the nurses to come in and look at you. They thought you were OK. I told them you weren’t. The NICU doctors were present for your birth and cleared you but I made them come back. Easton, I knew you were sick. I knew you needed help. I was never more sure about anything in my life even though nobody really believed me. I wasn’t able to leave the room to go with you but I made Daddy follow you. He called me from the NICU and said that you were doing OK and that you were just born too fast. Everyone was so relieved. Except me. I didn’t believe them. There was something in my gut that told me you were not even close to OK and they just didn’t know it yet. I knew you. Nobody else did. As the night went on everyone told me to rest. I couldn’t. I kept walking from my room to the NICU even when they told me not to. Everytime I walked in the NICU- you were worse. You went from breathing fast, to a nasal canula to bipap, to a Ventilator in less than 12 hours. Easton, this is where things get hard for Mommy to tell you about. I did not know what a ventilator was for. I didn’t know that it can be a temporary relief for you. I thought that when a human being went on a ventilator- they didn’t come off unless they died. When they told me they were putting you on a ventilator- I thought that you were not going to survive. A name you have heard many times and will continue to hear for the rest of your life is Roberta. Roberta was your nurse that day. When she realized what I thought, she came and pulled Mommy up off the bathroom floor and put you in my arms for the first time since you were born. She knew you were not stable but she also knew that I needed you and I think you needed me at that moment. I think I was able to hold you for about one minute- but in that moment, I gave you all the support and will and fight I had to give and I begged you to FIGHT! Buddy, that was the last time I held you for almost three weeks. You were so sick. They had to move all the other babies to another room and they put up these privacy walls so that there was no extra stimulation. I couldn’t even speak around you. You could sometimes tolerate the nurses and doctors speaking softly around you but every time I spoke or attempted to touch you- your little body went crazy. This is when I knew for sure that you knew me. You knew your Mommy even in a drug induced coma. You knew my touch was different from anyone elses and the very sound of my voice was enough to break you through all those heavy meds. As painful and devastating as it was to not hold you or touch you or speak to you- I feel like my silent presence a few feet away gave you courage and fight. Everytime I left the room which was rare, I did whisper to you “fight the good fight, buddy.”
There were so many scary days but I want to tell you about the scariest day of our life. The day I witnessed
a miracle- YOU. Easton, you were three days old. You were on a ventilator and then they moved you to a high frequency ventilator which shook your little body as it breathed for you. The settings were maxed out and they were pumping every drug they could into you. It wasn’t enough. Nothing was working. Your little body was giving up. You were gray. You were limp and there were probably 15 people working in perfect unison around your tiny body. They were fighting so hard for you. They called a helicopter to come take you to another hospital because they thought you would need something called ECMO- a heart/lung bypass machine. I stood watching you and praying so hard. I begged God to save you and I begged you to not leave me. One doctor turned around and told me that you were leaving this hospital but that you would not survive the flight to the next one. They told me you weren’t going to survive, Easy. I don’t have the words to tell you what that meant or felt like. There aren’t any words that can do that justice. I made a couple phone calls and your whole family showed up in the waiting room within minutes to be there when you left us. Then it happened. The limp baby whose SAT’s kept dropping despite all the drugs and being bagged for so long, the one who was awaiting transport- became stable. Not super stable by any means. Your o2 popped up into the 70’s again and you sort of stabilized. So much so that they didn’t want to transport you because they knew you couldn’t handle the stress. They wanted to put you back on the conventional vent, fill you up with maximum steroids and basically sit still and wait. I was staring at everyone in that rooms face. I could see the shock. Nobody had many words for us. They had hugs for me and a lot of tears in their eyes. I knew what just happened. I knew you had just fought the fight of your life.
|Too many drugs.|
|Willing my strength into you|
The rest of your stay in that NICU was more of the same. You had so many terrible days and very few good ones for so long. They did not give up on you and neither did I. I sat and stared at you all day, every day. Rooting you on from afar because Lord knows I couldn’t touch you. I know you knew I was there. I know you knew I wasn’t giving up. Day after day it was a roller coaster. You were never really OK but you weren’t as bad as that dreaded day 3. After about 3 weeks of that, you slowly started to turn the corner. You opened your brown eyes. You let me touch you and eventually, you were placed in my arms again. We made all kinds of deals again on that day. I thanked you for fighting and I told you all the things we were going to do with this life you fought to have. All you had to do was keep fighting and I would carry you through. Me and you, baby.
|That poor chest!|
|Getting closer to home.|
Exactly one month later, on your due date- you came home! This was dramatic of course as well. Your airway was floppy from being intubated so many times and you only failed your car seat test FOUR times! We finally got the OK and I had to ride in the back and try to keep your head straight so your airway was open. So stressful you were! We had home health care come a couple times a week and every single time you were right on the line for needing supplemental oxygen at home. Have no fear, you prevailed as always and we skipped that! Thankfully. Soon we got another surprise. You screamed all day. Literally 23 hours a day. You see, when you were in the hospital you had some narcotics running in your IV’s all day long. These were to keep you calm, still and not in pain. Your poor little body started to really like them and then you had withdraw symptoms once you were home and without. Here is the good news. I told you I had made a lot of deals with you when you were in the hospital. One of them was to not ever wish you to be silent. On a ventilator, you could cry but it was silent and I swear it’s the worst thing to watch, a silent cry. I wanted so badly to hear you scream. And, scream you did. For months on end. All the time. I’ve never been very patient but I will tell you that I never lost my patience. God knew I needed them and gifted my endless patience and gratitude. My son, you screamed in my face for months and I did nothing but love you harder!
There were many other complications such as failure to thrive, muscle weakness on the left side and pneumonia 5 times and RSV 3 times all in the first 9 months. We did occupational therapy, physical t
herapy and saw the Neurologist regularly. You were admitted into the hospital for respiratory support three times during those first nine months but guess what- you were on track and walked before your first birthday! You are the biggest inspiration of fight I’ve ever witnessed. I’m so proud of you.
We started a charity called Team Easton Gives Back and held the first event around your first birthday. We knew that you were with us to make a difference and we weren’t about to let your fight go without serving a purpose. To date, we have raised over $100,000 for Hurley NICU and Pediatrics in your name. You are leaving a legacy, young man and I cannot imagine where this world will take you. This year you were selected to be the Speedway Sponsor for the Children’s Miracle Network and you will continue to raise awareness. Six years old and already a role model.
Before I close this letter, I want to tell you about you as a little boy. You are exuberant. You are literally full of life. Every day at school is “great!” Every gift you receive is “The best one ever!” Every time you are sick or in the hospital, you find the bright side. “At least I’m only here 5 days instead of 6!” You are tolerant of your crappy lungs. You push them by being an active young boy but you recognize when they need a break and you give them one. You are not held back by them. If you find something you cant keep up with, you simply find something new. You are full of stories and always surprising us when “Jesus sits on your shoulder.” We take our cues from you and we know you are here with purpose. You are a breath of fresh air and you teach me so many lessons in this world. I truly believe you are happy to be alive and you know somewhere deep inside your soul- that you were given an extra shot. Easton Edward, you changed everything and I love you more than anything in this world. Keep fighting that good fight, baby.