Emaline's Heart Journey

On December 29, 2015 my bright-eyed niece, Emaline Day Dorough, came into our lives. She is truly a warrior and an inspiration. My brother, Wes and his wife Ashley have agreed to share her story. Please read this phenomenal story of her journey. I am asking that if you would like, please donate to assist with her medical expenses. She is our little heart warrior and your support is truly a blessing.

 

Emaline Day Dorough
written by Wes & Ashley Dorough

Our beautiful daughter Emaline came into this world on Tuesday, December 29th shortly after 4pm. Mom and baby were happy and healthy. She was delivered to the sounds of family cheering as she cried for the first time. Ashley and baby were soon transferred upstairs for the remainder of their stay at the hospital. The first night was wonderful. Emaline slept with her Mommy and Daddy on and off throughout the night.

Morning arrived and she was quickly checked out by a pediatrician. Congratulations were shared and the doctor soon left with only a mention of a possible heart murmur. She reassured us that she didn't think it was serious but would like her checked out by a cardiologist before leaving. Ashley and I laid back down to steal a few more minutes of sleep as the constant stream of nurses, staff and lactation consultants poured in and out. We had been concerned about Emaline’s rapid and shallow breathing since birth, but every doctor and nurse reassured us that it was normal and that she was just trying to figure out how to breathe as a newborn. Sure enough, a lactation consultant came by that morning and noticed the breathing and agreed that it was worrisome. She immediately grabbed a nurse and they did a pulse ox test, where they soon realized that she was not getting enough oxygen to the lower part of her body. From that moment on, our whole world would change. 

 Eighteen hours after spending every living moment with her parents Emaline was taken from us to the NICU for what we were told would just be a very quick check by a cardiologist and NICU doctor. Everyone who saw Emaline reassured us that she looked amazing, there was no way anything was wrong with her! We threw on some clothes and escorted her down to the NICU. She was setup on a warming bed with a plethora of monitors attached. We were soon asked to leave so she could receive an IV and the nurses could draw blood for labs ordered by her cardiologist. Losing sight of our child for the first time, we brushed this all off as precaution. In our delirium we both slept on the waiting room bench as we waited to be called back. 

 Soon we were asked to return to her bed side where we could stay for the next 21 hours. We sat and waited and held her trying to make this transition as easy as possible for her. We had questions but no one could really tell us what was going on, just that her oxygen saturation levels were off. We sat, confused and delirious, for what seemed like an eternity. Finally the on call cardiologist showed up and began the echocardiogram. 

 For twenty minutes we sat and watched the black and white images of her little heart. As the doctor finally began to explain, in his words, there were a number of problems. Astonished, we sat and listened in utter disbelief. This was the first time a word other than perfect was used to describe our child. 

 The doctor was quite hesitant to say anything definitive. He threw around some words like shone's complex and under developed left side of heart. His tone was grave and sharp. When we asked what the next step was, he responded, "we have to get her to Elgeston".  He had put in the transfer request and said he would work on getting her over there. We now had to wait for a bed to become available. 

 We sat, in shock and tears and we just waited. No idea what was wrong with our seemingly perfect baby. For the rest of that day and through the night, we stayed with E in the NICU. Emaline slept best when being held so we traded off holding her, continuing to do skin to skin and breastfeeding when able to. Those hours in the NICU were moments that will never be forgotten. We were extremely exhausted. Holding Emaline meant we needed to be awake and alert… something that was nearly impossible. If Em didn't have an alarm going off from a sensor shifting out of place, one of the surrounding babies had an alarm. Eventually we would have to put her in her bed as we literally could not keep our eyes open. 

 Family was coming by offering everything they could. They were our lifeline for meals and comfort. We were complete zombies, cherishing every waking moment with our baby. We finally made it through the night and got news of her being transferred in the late morning (now New Year’s Eve). 

 Ashley was soon discharged and Wes went back to our room to start to gather our things. A few short hours later he got the call from admissions at Elgeston. With choked words he gave all information requested. Things started to move very quickly from there. Wes arrived back from packing the car just in time to watch the transport team pack Emaline up for her first ride. Ashley would be riding with Emaline in the ambulance, and Wes was to follow behind. 

 In Wes’ words:

“Watching your child wheeled away into an ambulance is a very difficult experience. The drive for me from hospital to hospital was really tough. First time I had experienced my child not in the same building as me. Even knowing she was in the best of care and her Mother was with her, it still hurt.

 Emaline and Ashley made it to Egleston no problem. I made it through admissions and went straight up to find them. Walking into the room and immediately seeing the care and attention on her gave both Ashley and I a huge sense of relief. Something not experienced in a few days. 

 When I arrived they were already doing another echocardiogram on her. The doctor right next to the stenographer was watching everything. He could tell how shook up we were and looked me in the eye and told me "She is going to be fine, just a little delayed getting home". These simple words made everything seem like it was okay for a moment. And when the panic returned, it was much subdued. This was the first time since she was taken from us that someone told me she was going to be okay. I can't stress how huge this felt. 

 He told us that all 4 chambers of her heart were developed and fully functional . Ashley and I both gave a sigh of relief. He drew us a diagram and explained her aorta had narrowing, called Coarctation of the aorta. He said she also has some left heart issues, mainly that the valves look a little small. He sat down and gave us a game plan. She would need surgery to repair the coarctation. She would then need monitoring to see how her heart responds. If everything went well we could take her home by the end of next week.”

 Unfortunately, two days later Emaline acquired an infection in her bloodstream of MSSA (non-resistant staph) through her umbilical central line. This infection turned out to be the hardest thing to kick, and they had to put off her surgery until she was completely free and clear of it. It affected her meninges, but thank God we found it and were able to treat it almost immediately. 

 We ended up having to wait TWO weeks to have her surgery. This was the most trying time for us. Her surgery was successfully done on January 19th, a day we will never forget. Emaline did amazing, and has been recovering well.

 The future: So far, the left side of her heart seems to be responding well. What we hope for is that the mitral and aortic valves will continue to grow with her. If they don’t catch up, we are looking at future surgeries. We need her to be quite a bit older before doing these surgeries, however, since we have been told that they are extremely difficult. We will have monthly cardiologist appointments to monitor. We also will be continuing speech therapy for her vocal chords (there was a little nerve damage during surgery). 

 We are so proud of our little heart warrior. She has taught us patience, faith, and how to trust that God is in control and has a plan. She is the happiest baby and so very strong. She has already touched so many lives, and we feel so honored to get to be her parents. 

 The amount of love and support we've received from everyone who hears our story is mind blowing. It’s because of you, our faith, and our love for each other that we are still standing so strong.