I have gone back and forth about wanting to write a post at this time. This post was supposed to be different... or so I thought. I wasn't sure how painful it would be to write or if I even wanted to remember the feeling of this experience in such a raw state of emotion. I don't know if there is a right or wrong answer to those questions but I have chosen to try and write this post regardless of how bad it hurts. The reason is because it is Easton's story. There isn't much I can do as I sit here next to him besides support him, try and comfort him, pray for him, and tell his story like any proud Mom likes to do. And, boy am I proud. Here it goes. This is the story of Easton Edward Clark's life- so far! He WILL have many future posts, pictures and updates. I just know it.
(I'm unable to load pictures to this site under Hurley's network so this will just be words. Trust me he is beautiful and you can always check Facebook to see his beautiful face.)
Easton was born on May 18, 2011 at 1:59pm. It was a quick, easy delivery and he came out screaming! He screamed louder than my other kids and we were so relieved that he was OK after such a rough pregnancy. After delivery they set him on my belly for just a second so they could clean him up and have the NICU doctor check him out. He weighed in at a whopping 6 pounds 7 ounces and was 19 inches long. His apgar scores were perfect and I was told he was doing great and wouldn't need a trip to the NICU. Matt and I held him and then let family in to hold him as well. My body was so numb from a fantastic epidural that I was OK with passing him around as I tried to get my bearings. I didn't know that would be my only chance to hold him in the near future. I really regret taking those first few moments for granted. As we all smiled and talked about how cute he was, we all noticed he was making a noise that sounded like cooing at first. It was cute for awhile but then I got a sinking feeling that something was not right. I got him back in my arms and noticed that his hands and feet were really blue. I brought attention to it and was told that it was OK in the first 24 hours for that to happen as long as his body stayed pink. Something told me otherwise. I have always had a great Mother's intuition with my other kids and was actually hoping I was wrong this time. I wasn't. Just as they were going to wheel me down to postpartum I asked the nurse again if he was OK. She told me that she could call NICU again if I wanted her to. The NICU Dr. only had to walk into the room and hear the sound to whisk him away in a flash. This is the moment my world changed forever and I didn't even know it.
Easton arrived in the NICU and was put on the non-critical side because they just thought he had "wet lungs." No big deal. Give a little oxygen and send him on his way in 24 hours. Once again, I had the feeling it was more than that. All the nurses and doctors told me otherwise and I remained the crazy person who didn't believe them. I was still in the hospital myself but got up every single hour to come check on him thru the night. It didn't take long for his little nasal canula to be switched to a Sipap machine and then to a ventilator. My son was on a ventilator. Try that statement on for size. I could hardly get the words out. What? How did this happen? I couldn't touch him. They didn't want me to talk around him because ANY stimulation made his levels drop. There are no words for the helplessness I felt in those moments and still feel today. I am his Mother. How can I not only not help him, but hurt him if I touch him? I could go on and on with the details but there is no point in reliving that. Obviously his condition worsened and he found himself in very critical condition. The chest X-Ray on day two showed a complete white out. (White is not good on an X-Ray. Black is good.) We were in a tiny, tiny room and the doctor looked right at us and said, "You have a sick, sick baby. Very Sick. Cross your fingers." Not exactly what I was looking for. Before you judge his delivery of news, let me tell you that this is a smart man. He started this unit 34 years ago and has been saving babies daily ever since. He scared me at first because he is extremely direct and tells you exactly how it is. I've come to understand him and like him. How could I not, he saved my baby's life on Saturday and is working daily to continue to do so. I could care less about his delivery at this point!
The diagnosis so far is: PPHN (Persistent Pulmonary Hypertension in Newborns) and we believe an infection of some sort. Cultures are negative but all blood work shows that infection is in the body. Could even be viral but something else is going on. Doctors have worked hard to make a connection as to why this is happening and why this case is so severe without much luck. They have combed my medical records and all lab work I had during pregnancy but cannot link the two. They have also tried to find something in the heart that would be causing this but after four Echocardiograms and two visits from Pediatric Cardiologist's, there doesn't seem to be blame there either. One of his doctors put it this way: "Every now and again, you get a case that humbles you as a physician. This is that case." I wish we were more of a standard case with standard answers but thats not how we do it in this family. We like to stand out in a crowd, be a little different, and little Easton is taking it to a whole new level. He is making his own way and I am fine with it and I will ride it out with him, but he HAS to come out on top! He just has to. That's all there is to it. God is watching, I can feel it.
The ups and downs of this journey are torturous. I could try to explain it to you but it is not possible. We live minute to minute, not day by day. Things change that fast. Literally. You have a couple of good tests in a row and just as you take a deep breath, you get the wind knocked out of you before you can exhale. When you get good news, you want to jump up and down but you can't. You just can't do that to yourself. You force yourself to be optimistic but your body has a protective mode that tries to shelter you and keep you prepared. Bodies are amazing. I must tell you that you would not believe what your body does in a situation like this. You really can stay up without shutting your eyes at all for days on end. You can survive without eating when your body won't accept it. You can continue to put one foot in front of the other when you want nothing more than to curl up in a ball. You can change your voice to sound like life is good when your two and four year old want to talk to you on the phone. People don't know how we are doing this and credit us for being so strong. What choice is there? We can't lay in a corner and not fight the fight with him. Easton isn't giving up so how can we? Don't get me wrong, we take our fair share of sad times. We cry, we feel paralyzed and can't move, we have to walk out of the room to catch our breath, but when push comes to shove- we stand up. We move forward and we brace ourselves for the news. We pray for good and we pray even harder when its bad. We love this little boy with all our hearts. We will never give up on him and we will continue to be by his side each and every step of the way.
There are images and scenarios that are imprinted in my brain that I will never forget. The most excruciating being when we were sure we were going to lose him. I will never forget what my husband looked like slumped over in his chair while he watched the Dr. bagging his little boy. People moving smoothly and methodically trying to not lose his little life. I couldn't watch but I could hear. I heard that he had 15 minutes until they air lifted him to another facility. I also heard that he wouldn't make the flight. I know exactly what Matt looked like. His hair, clothes and expression on his face. I remember that I couldn't cry at that moment. All I could do was look at my husband and tell him I loved him. You don't always react how you think you would. It's so strange. This experience has rocked my world. It is no exaggeration that his precious little life has been touch and go several times in the last 10 days. He is an amazing fighter with incredible strength and courage. I am so proud to be his Mama. He was chosen for me and I am able, willing and ready to care for him, love him, and rally for him day and night.
This whole experience has changed me. I will never be the same. I think I have always been a good Mom, but I know I will be a better Mom from now on. I'm not saying I am superhuman and my kids won't drive me crazy. Trust me- they will. I'm just saying that I will never take them for granted. I will never just be thankful that I have them. It has to be more than that. I understand how precious life is. I understand the value of one good minute and I understand how quickly life can change. I'm going to do my best to live in the moment. To literally try not to sweat the small stuff. To appreciate each and every day with the ones I love and to know how blessed I am to have them.
I also want to give credit where it is due. Our families have stepped up to the plate to help us through this in a huge way. Our parents have taken care of Carter and Paige (which is no easy task) without blinking an eye. Other family members have entertained them, brought us food, visited us and showed an unwavering support. Friends are also helping and spreading the message of his story in hopes of sending more prayers his way. Thank you is not enough but all I have for now- I thank you with everything I have.
To: My Matthew,
I'm not sure why this is happening to us but I could not get thru this without you. You are as strong as they come. You carry me thru this and you inspire any strength I have. God has us together for a reason and together we can do anything. I hope you can draw strength from me as I draw from you but one thing is for sure: Together, we can and will do this. We will support Easton and give him the best life possible in our happy home. Thank you for all you do and who you are.
*Please keep praying for our little boy. He deserves a chance at life and we so badly want to show him what its all about. We are dreaming of the day when someone says these words, "We are FINALLY out of the woods."