Emily Rose Bliss
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As I sit here watching my beautiful, bright 4-½ year old daughter cutting out pictures from magazines, it astounds me to think of the way her life began. On September 17, 1997 at 26 weeks gestation, weighing 1 lb. 12 oz. Emily Rose Bliss was born to two happy and extremely terrified parents. Her weak faint cry when she was born was our sign that although she had a rough road ahead of her, she would be okay. Thus starts a 4-month stay in the N.I.C.U. A stay that was about as easy as a cruise ship sailing through the eye of a hurricane. We knew we were in for a long haul when at only 3 days old, our darling daughter decided to exterbate herself from the vent. Although she did well on CPAP she was much too small to continue breathing on her own and gain weight at the same time. So the decision was made to re-interbate in order to save her energy, the only problem was that the doctors failed to consult with Emily concerning their decision, so the second self-exterbation and the third, and fourth, etc…. (My husband and I stopped counting after five). Finally, Emily kept the tube in long enough and a planned exterbation was scheduled for November 3rd. All was well until a doctor decided that a blood gas was needed, that was the beginning of a long journey that would change our lives and the lives of our family. She got so distressed at the taking of the blood gas that she couldn’t regain her breathing. She desated then bradicardiaed so low that she stopped breathing and CPR had to be performed. She was given 3 doses of epinephrine and finally was stabilized. Damage had been done to her throat, an Ear, Nose, and Throat specialist was called in and a bronchoscopsy was done. The decision was made that she would need a tracheotomy because she had glottic and sub-glottic stenosis (a build-up of scar tissue in her throat). On December 5, 1997 Emily was trached. On December 7th, 2 days after her surgery, Emily, for the first time since she was born, was free of machines and we could actually hold her and see her beautiful tape-free face. The process for Emily’s homecoming was underway, and on January 13, 1998 Emily came home from a 4-month hospital stay, along with all of her medical equipment and nursing. Because of her trach, she was entitled to 16 hours of nursing a day, which to two exhausted parents was a welcomed help. Emily also had an n/g tube feeding because she didn’t want any part of her bottle, and a short while after she had come home see was diagnosed with reflux so this made feeding her a nightmare! (I don’t think that there was a spot on my carpet that wasn’t graced with Emily’s formula) Through Emily’s entire feeding problem’s she progressed nicely trach-wise. Finally, we got the news that it was time to decannulate! Our ENT in Rhode Island gave us the name of a well-respected doctor in Boston to give us a second opinion, you for know for insurance purposes’, so we went up for another Bronch. Dr. Healy informed us that she had a tethered vocal cord (a web on one of her cords) unbeknown to us! My husband and I began to question our confidence in her doctor so after much research via the Internet, we decided to stay with Dr. Healy and we have not regretted it a bit! He released the web and Emily began making some voice quality sounds! It was music to our ears! We then made the appointment for her decannulation in August. We kiss our daughter good-bye as she went in for her surgery and we sit in the waiting room eagerly waiting the moment we get to see our daughter without her “bow tie” around her neck. Dr. Healy appeared in the doorway and summons us to the conference room where he proceeds to tell us that the cartilage that is supposed to form her windpipe was non-existence and that she would need further surgery and the trach would have to stay in while he could reconstruct one for her. As we recovered from that punch in the stomach, we went to see our baby in the ICU and tried to find the words we needed in order to tell our families that Em was stilled trached. As I sat beside her bed I looked around the ICU and saw children that were extremely ill, more so than Emily ever was, having conditions that could not be “fixed”. That’s when we decided to pick ourselves up, brush off the dirt and come out fighting again. We’ve done just that, now at 4 ½ years old, Emily is in school, and she is actually speaking around her trach and with the help of a passy-muir valve. She is the happiest, most compassionate, lovable child any parent could ask for. Persistant and strong willed as the day is long, (a quality that at times we dread, but we also know that it’s what has kept her alive). She is developmentally on target except for her speech and language naturally and will most likely start kindergarten in September. Emily’s road with her trach is not yet over but it will be soon we hope. She knows nothing else but her trach so we are in no rush, whatever Dr. Healy, and most of all God, wants is what we will accept. For now we look at her accomplishments with great joy and know that no matter what, our daughter is our pride and joy and we couldn’t love her any more for all she has given and continues to give us.
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If you have any questions or just need to talk to some one who has been there, please feel free to e-mail me at cbliss4@cox.net.
