Emery Reese born on February 15th 2017 at 24 weeks 1 day. 1 lb 6oz and 11.5inches long she came into this world fighting like a champ. She is my one and only child. The day she was born changed our lives forever as we started the NICU journey of ups and downs. No parent is ever prepared for the NICU journey its the hardest thing we as parents will ever have to endure. Especially for the parents who babies hasn' made it home. Not all NICU stories have a happy ending with the miracle coming home, other babies become guardian angels. As a parent how do I keep my only childs journey and story alive and to make parents aware of not only the good but the bad. Emery was nearing seven months old she had six days to go and our baby girl would have been in the NICU for seven months at four different hospitals. On day six her intestine ruptured I'll never forget the call at 4am saying we need to get to the hospital now that she is being transferred for surgery I felt my world was about to shatter, little did we know at that time how strong preemies can be our Emery was transferred we cried, prayed, cried, and prayed the surgeon said most babies don't make it through this type of diagnosis as small as she was as a micro preemie. They placed a drain and within a few weeks she healed NO surgery needed! Miracle right? Absolutely only something God can do. The next hurdle was about a month old her kidneys shut down for three days again was told most babies will not make it, well she did she went from being so swollen you couldnt make out any features on her face to fully functioning kidneys. The normal for parents is to have their baby lay on the mothers chest when born it took us six weeks and one day to hold our baby girl it was the ultimate joy of my life I had waited 34 years to become a mother and this was the most perfect night ever. She was thriving and doing good although she was on the ventilator since birth. Then to add to the emotional journey she needed a PDA ligation to control her pulmonary hypertension again my heart hit my toes, as I laid everything in the Lords hands she went through it like a champ! This is when she got the nick name "rocky" because she was a fighter through so much. Weeks later we received a call saying she was being moved to Vanderbilt in Nashville Tennessee because she needed retina surgery to save her eye sight, again she took a three hour ambulance ride while on the ventilator went through surgery and came back to Chattanooga Tennessee. This is when everything started to change, you never know really what to expect in the NICU...so the trip to another hospital at 101 days old changed our lives when the other hospital started asking why she wasnt being taken off the ventilator BC she was doing so good there on a setting that only helped her breathe when she needed the extra support... As parents when we got back home we started asking questions we previously never would of thought of. We become intimidating to staff because they said most NICU parents are so unsure of everything going on they visit and leave but we were different, we ask questions, we study, read, and learn about what' going on with our child asking questions as medical personnel they couldn't answer. We had NO clue about several diagnoses, we got close to a few nurses and that' when we learned of something called parent care conference were all the doctors meet and discuss what' going on. Parents this was a level 3-4 NICU when we were not there she was ruff handled, received two broken bones they blamed it on her being a preemie but we were never told of any diagnosis in which this could happen until two months later. I started fighting with the insurance company to have her moved to a better facility as a parent were our child's voice we have to stand up for what we believe in and what' right we can not let the insurance company decide what' best for our children to be. One Thursday night while visiting the RN didn' know how to save her, she turned purple, flstlines, and went limp me being in nursing school jumped up as the nurse was flicking her little toes saying "come on baby" I'm scared and I had to show her how to save my own child by doing chest rubs, bagging her, and getting respiratory in the room stat! My eyes were even more open at this time I spent hours upon hours every day with her while being back at work full time, the next day is when we learned of her broken arm...what happen that night after we left we will never know. We learned of the NICU bill of rights this is a set of guidelines parents have in the NICU and we started fighting for our rights Emery was so strong! She came off the ventilator for nearly two weeks when medical representatives came in and wanted to try a "test circuit" on her with in 1-2 days she had pneumonia and was back on the ventilator. We were furious because we as parents did not give consent for this test circuit, the physician was not aware, and we were told "were sorry" but the respiratory team allowed this to happen and don' need our permission. How heartbreaking is this to hear as a parent that they'e doing this to our child and we have no clue until I walked in and caught them right in the middle of bagging her when she didn' need it, the only reason was BC they wanted to try this test circuit out... My heart hit the ground again. Beeping machines, alarms, tubes, needles, sleepless nights...what a journey it can be. Being in healthcare I knew I could fight the insurance company to have her moved and guess what I won! We had her moved finally after moving her she was stable enough to get a trach we were on a good road finally! She was growing so fast, she was more beautiful each day. She went through more in seven months than most people do in a life time. Her inadequate care at a local hospital, several rounds of pneumonia and infection took its toll on her. She needed up getting sick with her fourth round of pneumonia and her lungs were so little and scared from her previous rounds she fought as hard as she could...by this time it was to late her lungs couldn't oxygenate her organs at this point, her pulmonary hypertension had returned BC the previous hospital failed to follow up with echo's so a late diagnosis caused right sided heart failure, which turned to portal hypertension, which then shut down the oxygen to her colon and other organs. On Sept. 7th 2017 at 4:55pm we had to make the decision to turn her ventilator off we had a fighter and her little precious body was tired. Her oxygen saturation was 30% and she was already turning blue. The nurses laid her on my chest I wanted her to hear my heart beat one last time I knew she knew mommy was there her oxygen shot up to 60% and slowly trickled down, we dedicated her to the Lord and we looked up and her oxygen was 3-4% her face was now turning blue turning off her vent was the hardest thing as parents we had to do. Her season was up, she did what she was here to do. She made us aware of what goes on behind closed doors, I found Gid and became saved after being lost since I was 12 years old, she showed the world how strong preemies really are with over 100k YouTube video views her story spread as far as south wales! Being from the south interracial couples are frowned upon, but this little girl changed the minds of several people. I am a white woman, her father is African american and my mother, step father and brothers used to not agree with this...in her seven months I learned that she was here to save me! She changed the views of my southern family, God allowed her here so I can make other parents aware of issues hospitals don' want you to know. Emery Reese Herring changes our lives forever, and now we have a precious true guardian angel I. Heaven looking over us! Parents stay strong, be educated, don' be scared to ask questions and remember you are your child's voice! Rest in Heaven baby girl! This is just part of your story but your journey will live forever. We love you Emery! Momma & Daddy will forever be grateful for you and what you taught us through this journey.
This post comes from the TODAY Parenting Team community, where all members are welcome to post and discuss parenting solutions. Learn more and join us! Because we're all in this together.