Easton's Story

We were blessed with the greatest surprise blessing on July 16, 2013. Our lives as we knew it would all change. Easton was born premature (4weeks early) due to my battle with preeclampsia. I had been on hospital bed rest as well as an extremely strict diet to keep my blood pressure down, but no matter how hard we tried my blood pressure just kept climbing it was then that my doctor decided to go ahead and induce me and we welcomed our beautiful baby boy at 4:23 am on July 16, 2013. From that point on everything has been a whirlwind! Easton stayed in our room with us for about 30 mins as we shared our bundle of joy with all our family.  Soon after all the doctors and nurses came and whisked Easton away. He was admitted to NICU because the nurse had noticed he had been aspirating. I was a nervous wreck from then on out it felt like I was living in a bad dream. NICU is an experience that most (including me) are not prepared for. I had to wait until I could lower my blood pressure before I could see Easton. So for 3 days his father would rotate between the two of us and video Easton for me so I could see him. When I finally got to see my sweet boy he had been incubated, put on oxygen, and a feeding tube! All I could do was cry he looked so helpless and I felt like he was scared because he had been inside of me for so long recognizing my voice and now here he was in a box all alone with wires. I broke down and cried for a while until I realized I had to be strong for him! Over a week we spent sharing a twin sized couch bed in Easton's NICU room so we didn't miss a thing. We had left to go home and shower when we got the call that Easton could come home! I've never been so excited in my life! I didn't even think to question the fact that he hadn't been off oxygen or a feeding tube for a full 24 hrs and how he was going to handle life without it. All that stuck in my mind at that point was bringing my man home with us so we could be a family. Everything seemed fine for a couple weeks until we started noticing Easton making crazy noises while eating and gasping for air at night in his sleep. For many weeks we often didn't sleep and would sit up at night to watch him sleep in case something were to happen, until we could be seen the proper doctor. As soon as we saw the pulmonologist they assured us that Easton looked completely healthy and the noises he was making would be something he'd outgrow, but they would run some tests just to be sure. It was then that Easton failed every test that was given, aspiration was detected in his swallow study and his sleep study showed that he would quit breathing an average of 150 times a night. Then everything happened so fast they did several scopes and diagnosed Easton with laryngomalacia a common thing in premature babies. It is the underdevelopment of the floppy tissue in the airways that collapses when he inhales. The one problem with Easton's condition is that he is in the rare 1-5% of babies that have a life threatening case of it (because of the severity of his sleep apnea) the doctors opted to do his Surgery as soon as possible. Easton had his first heart breaking Surgery at 3 months! We were ecstatic and were hoping this would fix everything. We were disappointed to find that Easton failed his next sleep study after surgery and it was much worse than the first he would stop breathing an average of 250 times a night. They then decided to put Easton on oxygen and a sleep apnea monitor. We decided to do our own research and decided to get a second opinion at the aerodigestive team in Atlanta. While waiting for our appointment there he had been to numerous drs and had several hospital stays and Easton was also seen by a ophthalmologist who determined he had some serious eye issues going on put him in glasses while we monitored everything else. Before we left for Ga to go see the aerodigestive team Easton has a regular follow up eye appointment that took a turn for the worse. Easton has a rare eye problem in both eyes. Both his retinas were discolored and appeared to have several dark spots. What did this mean? Easton either has tumors behind his retina or a form of retinal dystrophy where the central vision shuts down and leads to blindness.  On top of this he needed surgery to fix his muscle control in his eyes. I felt like my whole world was shattered I didn't want anyone to know. I didn't want to talk or speak to anyone I just wanted to grab my baby hold him forever and cry for the rest of my life. I was angry inside and second guessed my faith because how could my child out of all the children in the world have so many problems?! Why him?!? Not that I would wish this on any one, but I couldn't help but to be angry inside. I dreamed of a normal child who had an amazing normal life with no complications while I was pregnant. Because as a parent that's all we really want for our child right? Then I started to think what is normal? Easton is anything, but normal in fact he's extraordinary and I am more than blessed to be his mother! I couldn't be strong for Easton if I was busy being angry inside. Easton needed me to be strong for him more than ever so, we as his parents do what it takes to hold it all together for Easton because we are all he has. We can't control any of the outcomes of his health issues, but we can control what kind of life he will grow up having! One full of love laughter and happiness! One where we focus on the positive things in life like how blessed we are to have each other and make the best of everything! We finally made it to Atlanta where they ran several tests that we are currently awaiting the results of, but they also preformed another airway surgery and took his adnoids out. And by chance (by God answering our prayers) we received word from Easton's eye Dr in baton rouge that one of the top 10 retinal specialist in the nation would be taking a look at Easton's retinas while they put him under to run other tests and preformed other surgeries. Did I mention that this dr only works Mondays and it was all by chance that Easton's surgeries were scheduled for Monday's the only day a week he works? Tell me that's coincidental. I think not. He confirmed that Easton does has severe problems in his retinas but that He wasn't quite sure of what, but that he and his colleagues would be performing every test possible to diagnose Easton and get him some help. Easton's surgeries and procedures all went well and he stayed in PICU for a full 24 hours. He had a very rough time after surgery and got some pretty bad infections but now he's starting to act like his old self. So on our 8 hour trip home I am writing this blog to share our experiences and inspire other moms with babies that have conditions similar to Easton or any conditions for that matter to never give up and stay strong! Its all Gods plan. We were dealt this hand for a reason. We were meant to be their mothers because they need us! I am lucky to be surrounded by a great support system full of amazing family! Including family in Ga who help make our stays in Ga completely possible and complete! They always are warm and welcoming and love Easton just as much as we do!