Saturday, September 28, 2013

Remembering Mommy

Therefore we are always confident, knowing that, whilst we are at home in the body, we are absent from the Lord:
(For we walk by faith, not by sight:)
We are confident, I say, and willing rather to be absent from the body, and to be present with the Lord. 2 Corinthians 5:6-8 KJV

My mother, Gwendolyn Carol Caudill Simpson was born in Blackey, KY on June 17, 1949. On September 21, 2013-one week ago today-she left this world and entered Heaven where she was met by her Savior and a host of loved ones who had gone on before her. She was 64 years old. Cancer-brain cancer to be exact-took her from us much too soon. Though I would not have had her stay in that sick, weak, cancer riddled body one minute longer, I miss her terribly. I am not sad for her, for I know that she is, at this very moment, beholding the splendor of Heaven and that she is free forever from the pain and suffering of this world. No, I am sad for me and all of us that are left behind to mourn her loss and to forever feel the void that has been left in our lives by her passing.

I am finding it hard to return to my normal life. Before Mommy got sick, I started this blog as a way to share Cooper's story. My goal was to chronologize our experiences on our journey to finding his diagnosis as well as to share with others about Christianson Syndrome. At some point, I will resume writing his story. I will pick up where I left off and I will complete what I started. I will begin to write and distribute a newsletter for the Christianson Syndrome Association. I will do fund raisers to raise awareness about CS and I will do my best to help other families who have children with CS in our area. I will continue to do Bible studies with my WOW sisters. I will do these things. I will. I tell myself this, because I have to believe that I can. Because right now, doing the most simplest of tasks seems to overwhelm me. Just getting ready, leaving the house, and interacting with other people is almost more than I can handle. Never did I imagine that the loss of my mother would have such a profound effect on me. I feel paralyzed by the loss of her and my grief. 

I loved her so much. Much more than I ever knew. Much more than I ever showed her. Two weeks before she died, she told us she had waited her whole life to feel love like this. I will never forget her making that statement. Why did she have to be diagnosed with terminal brain cancer for us to show her that love? Why do we take our loved ones for granted? Our parents, siblings, spouses, children, friends...are we showing them how much we love them? Are we telling them? Or are we going on with our lives, only thinking of our wants and needs, oblivious to those around us. Unwilling to make ourselves uncomfortable or inconvenienced for the sake of another. A lesson hard learned, but a lesson I will never forget. 

My life will never be the same. I will never again hear my Mommy's voice, see her face and that beautiful smile. I will never again be able to pick up the phone and call her. Neve spend another Thanksgiving, Christmas or Mother's Day with her this side of Heaven. I am so thankful for the 4 months that God gave us with her after her diagnosis. Mommy was a worrier, but for those 4 months God lifted all that off of her. She lived in the moment, and for the first time in my adult life I got to experience Mommy completely free of anxiety and fear. Yes! When she should have been crippled by fear and dread and the "Why Me" of it all, she smiled and laughed and enjoyed her family in a way she had never done before. She was beautiful, strong and brave. Courageous. Words I would have never used to describe her before, but will remember her always as exhibiting those characteristics to the very end.

I am so incredibly grateful to my sister Jennifer. She and I got to walk the last mile with our Mommy. We spent the last 12 days of her life with her. We made a promise to her that every time she opened her eyes, one of us would be there. We kept that promise, and in doing so we saw her suffer in ways that are hard to put into words. Not physical pain so much, but mental and emotional anguish and torment that was difficult to watch. We are forever changed by the things we experienced in those last days, but we feel blessed to have been there with her. We made sure she was never alone. Jennifer and I, along with our Dad and our Aunt Nancy, her precious baby sister, were by her side around the clock. I know I can speak for Jennifer when I say it was an honor and a privilege to minister to our Mommy right up to the last moments of her life. We are proud to be her daughters. We will never forget and we will love each other more for it and cherish our relationship with each other for the rest of our lives. 

The following was read at Mommy's funeral last Monday night. I wrote these words as a tribute to her. She was a wonderful mother and grandmother and I thought it fitting to tell people a little more about her through the eyes of her children. I think she would have liked it. I hope God allowed her to hear it. I think maybe He did.

We love you Mommy. Everyday.

                        A mother's love for her children. That is what I want to tell you about today. Gwendolyn Carol Caudill Simpson was born to be a mother. She loved her role as our Mommy. She brought each one of the three of us into this world with sheer joy. She was a dedicated mother: her love for us-unconditional, her devotion to us-unwavering, her loyalty to us-unfailing. She was always on our side, ready to fiercely defend us. She put our welfare above all else, doing her very best to make sure all our needs were met no matter how big or how small. I remember so clearly all the nights she would go from bed to bed, comforting each one of us when we couldn't sleep or were afraid. She would rock us and hum, "Rock of Ages, cleft for me, let me hide myself in thee…" Her very presence and the sound of her voice calming our fears, allowing us to drift off to sleep. She would later hum that same tune as she would rock our babies to sleep. Oh, how she loved her grand-babies! The love she had always lavished on us grew to include each one of them. When they were with her, our children were the center of her attention. She adored them and did her very best to make them feel special. Just as she loved being our Mommy, she loved being their Mamaw.

  Mommy was a simple woman who loved the simple things in life. She could take the most mundane activities and turn them into great adventures. A simple game of backyard croquet. A ride out into the country to see if we could spot a brand new calf in the spring. Teaching us, and later her grand-kids, how to make bracelets and necklaces out of clover flowers. Endless hours spent baking cupcakes, cookies, brownies and muffins. Taking an old quilt and snacks out to the backyard and having a picnic. Watching The Waltons or Little House on the Prairie. Teaching us about antiques and old fashioned things and how valuable they are. 

  She loved good food and big family meals. She loved to go to her hometown of Blackey, Ky-a place she would always refer to as "over home". Growing up, we spent many holidays and weeks out of the summers there. In the fall, I can remember her trying to time a trip just right so as we traveled the old road the leaves would be at their most vibrant colors, just beginning to fall. How it delighted her to see the leaves dance all over the road under the canopy of all those old trees. I think she enjoyed the drive over as much as the visit itself. She would tell us stories and sing songs like Hey, Mr. Postman, Teen Angel and Tom Dooley. We would sing right along with her. Once there, she would take us exploring all over Blackey. She loved to take us for walks across the old metal Blackey bridge to Joe Begley's store-an old clapboard building where she would get us glass bottles of pop and candy in a paper bag just like she did when she was a little girl. She loved  walking along the railroad tracks behind our Papaw Ben's house to pick blackberries. And no trip to Blackey was complete until she stopped to get a peach pop and a piece of pickled bologna on the way out of town. Those are precious memories-moments we will never forget. 

 It is an honor to say that each one of us, her children and her grandchildren, can rise up and call her name blessed. She was a devoted wife to our Daddy for 45 1/2 years, teaching us what it means to endure through the good times and bad. She was a praying mother, a bearer of our burdens, and a constant source of love and comfort all the days of our lives. Psalms 30 says "weeping may endure for a night, but joy cometh in the morning." Today we will weep for the loss of our dear mother, but we will also rejoice for her, that at this very moment she is walking with her Savior and her loved ones who have gone on before her. Her faith has become sight. Our Mommy is not gone from us. She has just gone on ahead. She has gone home. She will be waiting to meet us all there one sweet day by and by. We will miss her, but we will carry her with us in our hearts by reflecting on all of our wonderful, beautiful memories of our Mommy. Throughout her illness, when words became difficult, she would say to us, "I love you every day. Every hour. Every minute." We love you, too Mommy. Every day, every hour, every minute. Until we meet again.

Friday, May 31, 2013

Life with Cooper-Part 6: When Dreams and Reality Collide...

For My thoughts are not your thoughts, Nor are your ways My ways," says the Lord. "For as the heavens are higher than the earth, so are My ways higher than your ways, and My thoughts than your thoughts.   Isaiah 55:8-9

I believe I speak for Mommies everywhere when I say that from the moment we find out we are pregnant, we immediately begin to envision our child. Girl or boy? Blue eyes or brown? Towhead or a head full of dark hair? And then, if we choose to find out the gender, our imagination goes into overdrive! Prom dresses and wedding dresses or maybe football uniforms and baseball uniforms. Ballet slippers and tutus or shotguns and fishing poles. Skinned knees, braces, first dates, first broken hearts. As we waddle around and rub our ever growing bellies, we dream and we plan. We picture the first day of school, high school graduation, and going off to college. As we feel those first tiny little kicks, we are imagining all the places those little feet will go. All the adventures those little feet will run to. Oh yes, we see our child as we want him or her to be: perfect, beautiful, healthy, happy, talented, successful...So what happens when your reality doesn't quite match all those hopes and dreams? What do you do when the child you have will never be the child you believed he or she would be? What then?

As Cooper recovered from his surgery and his physical issues stabilized, it became all the more apparent that his cognitive function was no where near where it ought to be.  We had hoped that as he got stronger physically, he would catch up on his milestones: sitting up, learning to stand and walk, speaking. None of that happened. He would not walk at all, not even with assistance. His eye contact was all but gone. He seemed not really to know who we were. He showed no recognition of anyone, not even me and Scott. He had little to no facial expressions. It was frightening and disturbing to say the least.

We were concerned he might be deaf. On the 4th of July right before his 1st birthday, we were preparing to set off fireworks. I had Cooper in my arms and had stepped back from the crowd, prepared to take him inside. I was afraid all the loud noise would upset him. When the first big bang sounded, Cooper did not react at all. He didn't cry, he didn't even startle. One after another, the fireworks went off and still no reaction from Cooper. We shouted his name, clapped our hands, blew whistles right behind him. Nothing. Unless he could see you, he gave no indication that he could hear you. Alarmed, I contacted his pediatrician who quickly got us set up to see an ear, nose, and throat specialist. Cooper was seen and the first test in the office was inconclusive. His cognitive function was so low that he could not respond consistently to the sounds they were making. A sedated ABR (auditory brainstem response) test was done and found to be completely normal. I was thankful but confused. How could that be? He was too little to willfully ignore people and sounds. It just didn't make any sense.

Cooper had repeatedly suffered with ear infections. By the time he was 14 months old he had been treated for four. That was more than enough to make him a candidate for pressure equalization tube placement. So, for the fifth time, our tiny little guy was sedated for a procedure. It was, without a doubt, the worst! I remember the nurse asking us if we had ever seen Cooper have a "come apart".
"Oh no," I told him. "Cooper never cries." The nurse had tried to warn me, but I was not prepared to see my sweet little boy hysterical and inconsolable. He cried for hours, until the hospital staff gently suggested we take him home. Maybe he would do better once he was in familiar surroundings? We were afraid to put him in the car! We had over an hour drive and we could not calm him down. We finally got through that day, but something nagged at me. We couldn't soothe him. They said it was the quick sedation, but I thought it was more than that. Very soon I would realize just how right I was.

After the incident in the hospital, we began to see Cooper have these terrible screaming fits. When it happened, it would seem as if he were in severe pain. On Thanksgiving that year, we had to take turns walking around with him in the front yard while everyone else enjoyed their turkey dinner-thank goodness it was unseasonably warm! Christmas at my sister's house turned into a nightmare when Cooper began to scream so loud and so hard, I was convinced something was horribly wrong and we would be making a trip to the ER. After what seemed like hours of everyone in the house trying to calm him down, we rushed him to the car, buckled him in his car seat, and within minutes he was completely calm and promptly went sound asleep. I was flabbergasted. We soon realized that there were only three places Cooper was comfortable: our house, my mother's house (he had been kept by her since he was 6 weeks old, so her house was like a second home), and his car seat. Anywhere else and he would scream like he was dying. I remember so clearly taking him to see his pediatrician during that time. Within minutes after getting him out of the car and entering the doctor's office, Cooper started howling. Neither Scott nor I could do anything to calm him down. By the time Dr. Greg walked into the examining room I was in tears. I told him, "I just want to be able to help him, but it's like he doesn't know who I am. You have just as much of a chance of calming him down as we do." Dr. Greg didn't know what to tell me. Eventually this would all stop, almost as quickly as it started. But during that time, I would begin to feel a deep sense of hopelessness. This wasn't right, a mother not being able to console her child. He didn't want me. I had always been able to sing to Cole and calm him right down,  but my voice was just noise to Cooper. No one could help me understand, so I believed it had to be my fault.

I will never forget the day the seizures started. Cooper was 21 months old. I was out of town for work, about 2 hours drive from home. I received a call from my house. My mother was hysterical: Cooper had had a seizure. 911 had been called. I drove like a crazy person to get to him. Both my brother and I had febrile seizures when we were little, so I thought maybe he was sick and had spiked a fever. Cooper didn't have a fever, he didn't even have a cold. The ER doctor at Children's didn't seem too concerned. Cooper was fine by the time we got there. They did a CT scan, which was normal, scheduled us for a follow up appointment with the neurologist and an EEG. The EEG would show a "true seizure disorder". Bilateral, severe seizure activity. He would have his second major seizure just 4 days later. His first of several seizure medications was started. I was stunned and scared. He would be on seizure medicine for the rest of his life.

We were then sent back to the geneticist for more testing. Cooper's seizures were another clue. They now would test him for all the different genetic disorders that included seizures. All came back normal. Next they would try a microarray analysis. This was new: it tested the actual DNA instead of individual chromosomes. We were sure that if Cooper really had a genetic disorder, this test would find the cause. The process was long and expensive. We waited weeks to get the results. They came back normal. I was soooo frustrated. Why could no one tell me what was wrong with my child?!? After we received these results, I was told that 30% of children like Cooper were never diagnosed. There are literally hundreds of different known genetic syndrome and innumerable unknown. I was told that it didn't matter what the "name" of the syndrome was since there is no cure for such things. Cooper's treatment and care would be the same with or without an official diagnosis. I absolutely could not accept that. If my son did in fact have something wrong with him that would prevent him from ever growing up to be a normal functioning person, I wanted to know exactly what it was. I wanted to know how and why. I needed to know. Because deep down, I believed it was my fault. That somehow, I had caused it. Nothing but an actual medical diagnosis along with the cause and a positive prognosis was going to resolve my feelings of guilt.

Ironically, the day when I really came apart was after, of all things, an eye exam. Cooper was holding his head straight back all the time. One of his eyes sometimes turned in and we had noticed that his eyes  sometimes rapidly jerked back and forth. We learned that this is called Nystagmus and the eye crossing is called Strabismus. He could not tell us why exactly Cooper was holding his head back, whether for balance issues or vision. What the doctor did tell us that day, after a long and thorough examination, was that Cooper was legally blind. He did show signs of some vision, but very little. He could give him glasses to help correct the farsightedness that he had, but the majority of Cooper's issue was neurological and could not be treated. Just one more thing to add to the growing list of things that was wrong with our child. And still no answers why.

I would like to be able to tell you that I handled it with grace and poise. That I walked out of that office and turned immediately to my faith, to scripture, to prayer. What I did was exactly the opposite. I got in the car without a word. I turned my face to look out the window as hot, angry tears ran down my cheeks. Scott said something like, "We've just got to pray..." I turned on him, cut him off mid sentence and said, "You pray! I'm done praying! God did this! He's BLIND!" All I could think was "WHY?!? Why would you give me this child?!? I am not equipped to take care of this child! I cannot handle this! Why are you doing this to me?!?"

It would be many long months before I could let go of my anger towards God. I am so ashamed to admit it, but that is the truth. I rebelled against him, doubted his love, his very existence during that time. A lesser god would have struck me dead. I raged at him, refused to speak to him, gritted my teeth at the mere mention of his name. I was angry that my dreams for my son would never come true: He would never play baseball or hunt with his dad. He would never go to school like normal children. He would never go to prom, drive a car, get a job, go to college. He would never get married. One by one, my mind explored all the things he would never get to do, that I would never get to see him do. My dreams did not match my reality. I was mourning the loss of the son that I thought I had given birth to but now realized I never had.

I am thankful that we serve a long suffering, patient, merciful God. I did not deserve it, but he never left me. Not for one minute. Even as I railed against him, he was giving me the strength each day to endure. As I refused to pray to him, others were praying on my behalf. I can't explain the ways of the Lord. His ways are not our ways and his thoughts are not our thoughts. Isaiah 30:18 says, "Yet the LORD longs to be gracious to you; therefore he will rise up to show you compassion". Our God is not a mean, cruel, manipulative God. And in time I would realize that my Cooper was and is the greatest gift God has ever given me.

Cooper at 12 to 24 months:

This one is Christmas 2005. Cooper is 16 months old here. You can see him combat crawling and his eyes are slightly crossed. But still the absolute cutest little guy ever!!

2nd birthday

Wednesday, May 22, 2013

Prayers Needed for Our Mom

Is anyone among you sick? Let him call for the elders of the church, and let them pray over him, anointing him with oil in the name of the Lord. And the prayer of faith will save the one who is sick, and the Lord will raise him up. And if he has committed sins, he will be forgiven. James 5:14-15

Below is a post I composed for my facebook followers this morning. I wanted to share it here as well. We are in great need of prayer.

Mom will have a brain biopsy tomorrow morning at 8 AM at Johnson City Medical Center. As I said before, there are 2 effected areas on Mom's brain: the larger mass is deep. It effects the brain stem, mid brain,parietal, occipital, temporal lobes and the thalamus. It is inoperable. The second area is in the visual cortex, which is closer to the surface. This is the area they will biopsy tomorrow. There is a chance of partial loss of eyesight. Please, please pray protection over Mom's vision. The damage would be immediate and permanent. She was very upset by this. It is going to be quite an ordeal for her. We have to go down tonight because we have to have her at the hospital at 5 in the morning. She has to be put in an MRI machine, which terrifies her- we are asking for her to be sedated for that. After the biopsy, she has to be in ICU for 23 hours. Pray that they will let us stay with her as much as possible.
The thought right now is that this is probably lymphoma. The prognosis for mom will be very poor if it is. There is still a chance that it is something else. Please pray that it is anything besides cancer.
This has been such a long ordeal already and we still just don't know. There is a chance that after the biopsy we may have to wait a week to get a pathology report if they can't tell immediately what it is.
We are begging for prayer for our mother. We need her. Our Dad needs her. She is only 63 years old. I can't stand the thought of losing her. That was the first thought that ran through my mind this morning when I opened my eyes and it feels like a knife in my heart. I just keep thinking, "this can't be happening, this can't be real..." It's like some horrible nightmare you can't wake up from.
I am trying hard to trust in The Lord. I know he knows the need with our Dad. I know Mom is a saved child of God and that he loves her. I know he hears our pleas on her behalf. but I also know that sometimes his will is not our will, his thoughts are not our thoughts. We have to trust his will and cling to his Word, even when we don't understand.
Pray for us kids. This is so hard, watching both our parents go through this. Please pray for peace to settle over Mom. Pray hard that she will not be afraid. Pray protection over her vision. Pray that the biopsy will show anything besides cancer. Please, please pray. Thank you so much. God bless.

Friday, May 3, 2013

Life with Cooper-Part 5: The First Year

For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Doctors. Health Care Professionals in general, really. We put our faith in them. We look to them for all the answers, and we trust those answers when we get them. We forget that they are just humans, mere mortals who are capable of making a mistake or just plain failing to notice something. We want to believe that they know all things when the truth is, they don't. As a health professional myself, I believed whole heartedly that Cooper was a normal, healthy-albeit premature-baby when we brought him home from the hospital that first day. After all, Cooper had been under the care of the best doctors and nurses in East Tennessee. They had been over all 17 1/2 inches of his tiny body with a fine tooth comb during the 5 day period that he was their charge. Over and over, my mind would return to that train of thought: if there was something to see, they would have seen it. Cooper was fine. Nothing to worry about. Of course there were to be some bumps in the road. He was premature, after all. I would attempt to explain each and every one of the coming events that way, but the reality of the situation would present itself gradually-no matter how hard I tried not to see it.

Feeding was Cooper's first major issue. After I was no longer able to breast feed, Cooper was put on formula. Even before the switch I had noticed cramping and pain after feedings. He continued to have symptoms, so he was changed to lactose free formula. When no improvement was seen, he was changed to a third formula, which caused severe constipation. The next change caused even more pain and added projectile vomiting. With the fifth change came bloody stool, which threw me into a complete panic. My tiny little baby was sick all the time and was having difficulty gaining any weight. All I could do was stay the course, but I was beginning to realize this was not just simply a formula issue.

By the time he was 5 1/2 months old Cooper was on his sixth formula. This one caused rock hard stools which caused an impaction. My sweet boy only weighed 12 pounds after losing 7 ounces over a seven week period from all the vomiting, diarrhea, cramping, etc. At this point he was given the diagnosis of Failure to Thrive (FTT) and referred to a gastroenterologist (finally!).  He was also tested for Cystic Fibrosis via sweat chloride test, which was normal. The GI doctor changed his formula once again and started following his case closely.

Cooper was seen by a pediatric pulmonologist and prescribed respiratory medication for wheezing and other signs of reactive airway disease. His chest x-ray was clear and aspiration was suspected. Cooper was then started on Zantac and tested for food allergies. No allergies were found. The sweat chloride test was repeated to be absolutely sure he did not have Cystic Fibrosis. It was again normal. It was all very frustrating. I was incredibly relieved that he did not have CF but shocked that there were no allergies. Weeks and weeks of doctor visits, half a dozen formulas and a still sickly, weak baby and I was weary that we had yet to find the answer. I was anxious to take whatever action necessary to see Cooper eat without throwing everything up. I was concerned that he was not gaining weight and his physical development had remained below the 3rd percentile.

When symptoms persisted, A gastric emptying scan was ordered. Cooper received a new diagnosis: gastroparesis or delayed gastric emptying. This simply meant that it took an abnormally long time for Cooper's food to make its way through his GI tract. This explained some of the symptoms but not the frequent vomiting. Yet another medicine was prescribed and we were referred to a dietitian to help increase caloric intake to improve weight gain.

It was during the visit with the nutrition specialist that I was made aware that Cooper was microcephalic, meaning that his head was disproportionately small in relation to his body. I knew that he was in the less than 3 percentile in all categories: height, weight, and head circumference. I had not really given it a second thought. He was a preemie with serious feeding issues. I thought he had a cute little head, but apparently it was abnormally small, even under the current circumstances. Small head, small brain. I was a little taken aback. She tried her best to reassure me not to worry. Cooper was referred for a neurological consult. I was quite dumbfounded. How had we gone from feeding problems to a neurology appointment???

Because of his diagnosis of FTT, Cooper qualified for home services through Tennessee's Early Intervention System. They provided services in the home that included one on one visits with a TEIS specialist, OT, PT and Speech. At 7 months old, Cooper could not sit up on his own, crawl or do any of the other things most 7 month olds can do. He rarely smiled or made any facial expressions anymore, although he had at first. He was making no attempts at vocalization. I still believed it was because he was so debilitated from the feeding problems. I was hesitant to accept the services. I didn't want him to be seen as "special needs".  I believed if we could just figure out what was causing all the vomiting (he could barely keep anything down at this point) that he would get stronger and catch up on his own. What made me relent was the fact that Cooper would be in the care of  a co worker's wife. I had met her and really liked her. She assured me that the services could only benefit Cooper and could be stopped at any time if he no longer needed them. Right away, services were established and home visits were started. Even though everyone was super nice that came to our home, it was weird. I was really uncomfortable about it. I didn't think Cooper really needed those services. It seemed like we were almost being dishonest. Surely another child, one who was an actual special needs child with a irreversible diagnosis would benefit from the time and money being spent more than Cooper. Cooper was a normal, healthy baby. This was not permanent. He would be fine...

The day of Cooper's appointment with the neurologist finally arrived. An MRI had been ordered and completed. Cooper's brain, though small, was structurally normal. Cooper was almost 8 months old that day. He had seen several doctors, including a neonatologist and 2 pediatricians, over the course of his short little life.  Each time he was stripped to his diaper, weighed, measured and examined. So when this doctor began to go over Cooper inch by inch I was not concerned. As he was examining him, he began to ask me questions about what genetic testing had been done. I explained he had been tested for Cystic Fibrosis twice but that had came back normal. He then opened Cooper's little hand and pointed to a single straight line that crossed the entirety of his palm. "This is a simian crease. This is Down's." he said in a very thick German accent. I just stared at him. "This is Down's Syndrome. Your son has Down's Syndrome." I couldn't comprehend what he was saying to me. I had seen lots of children and adults with Down Syndrome. Cases that ranged from mild to severe. All of them were recognizable by their facial features. He then began to explain to me that there was a form of Down's called Mosaic Down Syndrome. In these cases, the chromosomal abnormality trisomy 21 was present without the physical characteristics of typical Down's Syndrome. He then proceeded to tell me that my son would be mentally retarded, never be able to attend regular school and  that he would likely have the mental capacity of a 10 to 12 year old when he was an adult. He said all this to me as if it were nothing. He sent me off to make an appointment with the Geneticist to confirm what he was sure was Cooper's diagnosis.

I was devastated. I had walked into that office that day with what I believed was a normal little boy with some very treatable GI issues. I was determined to hold on to the fact that he had been given a clean bill of health when he left the hospital that first day. As the neurologist explained to me about the simian crease, he also pointed out several other genetic abnormalities: low ears, creased ear helix (we called them his "Spock ears". We thought they were cute!), wide spaced eyes, epicanthal folds (a fold of skin over the corner of the eye-also common in Down's). On and on, he pointed these physical features out on my beautiful boy that were all signs of a genetic syndrome. Sure, people can have one or two and it mean nothing, But several together? He was completely sure. Cooper definitely had a genetic syndrome and he was positive it was Mosaic Down's.

I was angry. Angry at him for being so cold and cruel as he delivered life altering news. Angry at every single doctor and nurse who had examined my child and failed to mention even one of these things to me. How could this have been missed for EIGHT MONTHS! Angry that I would have to WAIT. First to get the blood drawn and then 4 weeks for the results. Once that was done, there was nothing to do but take my sweet baby home and try to keep living life without completely falling apart.

Genetic syndrome or not, we still had to get this GI thing under control. Our gastroenterologist had finally ordered an upper GI and pH probe. Scott and I took Cooper to Children's Hospital to be put under sedation for the second time in a month (the first time was for the MRI) to have the scope done and then have a pH probe placed-this required a tube to be run down his nose into his stomach to monitor the gastric reflux into his esophagus over a 23 hour period. It was a long, difficult process for all three of us, but the results showed that Cooper had severe gastric reflux due to the upper esophageal sphincter not functioning properly. It was allowing gastric juices to flow up into the esophagus every time his stomach contracted, leaving the bottom third of his esophagus raw and bloody. Left untreated, it could turn into esophageal cancer. We were promptly referred to a surgeon and one month later Cooper underwent a Nissen Fundoplication, where the upper part of the stomach is wrapped around the bottom part of the esophagus and sutured in place to prevent gastric reflux. It was done laproscopically, so he only had five small incisions. He stayed in the hospital a couple of days and then went home never to throw up again! It was a complete success! We were told it would take about 6 weeks for him to completely recover and then we should start to see him gradually get stronger and start to gain weight. We were thrilled.

Four weeks to the day after Cooper's blood was drawn to test for Down's,  I contacted the Genetic's office for the results. I had spent  hours researching Mosaic Down's. Cooper looked completely normal to me. He was too young and had been through too much with the GI stuff to adequately judge his cognitive function. I was trying to accept it, but it just didn't fit. When I finally got someone on the phone who could track down his testing, I was told that the test was negative. Cooper did not have Down's Syndrome. He would be brought back in for more genetic testing, but all would come back negative. The Geneticist would explain that there was no genetic panel that could be run to rule out all genetic syndromes. There was still a possibility that Cooper had a genetic syndrome. I didn't think so. In my mind I was still desperately clinging to my inner mantra: "He's fine. If there really was something wrong, they would have found it by now. He's going to be fine."

Over and over I would tell myself. And by the end of that year, I believed it. We celebrated Cooper's birthday with all our family and friends. It had been a long, hard twelve months. Cooper had recovered from his surgery, but still could not sit up on his own or walk, although he had begun to combat crawl. No attempt at speech yet either, but I wasn't really worried. They had told me it would take a couple of years for him to catch up with other babies, and that was without all the GI problems he had been through. He was the cutest little one year old I'd ever seen. The next year was going to be great, I just knew it...

Some favorite photos from that first year...

Brother love!
Big smile for his big brother!
 He loved to sleep with Cole even then!

Had to include this one! First Halloween-2 months old! So darn cute!!

4 months old. Playing with one of his first Christmas presents with Daddy.

6 months old here. Daddy's little mini me!

One of my all time favorite pictures of my boys taken on our first vacation...

First Birthday!!!
Cake face!

After cake-change of clothes! Present time!
As you can see, he couldn't sit up on his own at all...

...but he was a happy boy. We thought by his next birthday he would be running and laughing and playing just like all the other kids. After everything we had been through that first year, we had no idea the most difficult days were still ahead.

Wednesday, April 17, 2013

Life with Cooper-Part 4: Weak and Weary Mommy

I was with you in weakness, in fear, and in much trembling.      1Corinthians 2:3

It would be five long days from the glorious moment we welcomed Cooper into this big, bright world until we finally got to take him home. And if I thought the worst was behind me, I was mistaken.

Even though Cooper had been allowed to stay in the regular newborn nursery, he still required close monitoring. He had some nasal flaring and retractions, so he was put on oxygen for a couple of hours. His blood sugar was low, and he was placed in an isolette to try to regulate his body temperature. I would not see him again for several hours.

Back in the labor and delivery room, I was informed that the doctor had ordered the magnesium sulfate to be continued for another 24 hours! During the delivery, my blood pressure had gotten ridiculously high and still had not stabilized. I was still in danger of seizures or stroke. This meant no food, no water and no moving out of that bed for any reason for another whole day. At that moment, I was exhausted from the delivery and really didn't care. I ate my ice chips and went to sleep.

The next morning, they finally brought my tiny little boy to me, all cleaned up and wrapped like a little burrito. He was just amazing. He had this fine hair (called lanugo-all babies have it. Usually it falls off in-utero during the final month of pregnancy) covering his little body, especially his face and shoulders. It was so cute! He looked like a little monkey baby! He also had a head full of dark brown hair and dark blue eyes. From his head to his little bottom just fit in the palms of my hands. I just couldn't stop staring at him. He was adorable. And he was mine.

Scott had stayed with me through that first night, and we had lots of visitors the next day. Cole got to hold his baby brother for the first time.

But when everybody went home and Cooper was taken back to the nursery, I was completely alone. I just lost it. I cried and cried. I felt physically miserable from the magnesium sulfate. I was starving from having nothing but ice chips for over 24 hours. A labor and delivery bed is not a comfortable bed. It is not meant to sleep in-it's meant to give birth in. I couldn't rest at all. I felt disgusting. I had not been allowed to get out of that bed to go to the bathroom, much less clean up or shower. My poor nurse finally snuck and gave me a popsicle after I begged for something besides ice. She felt sorry for me, bless her heart. It was a rough night for both of us!

The next day, the magnesium sulfate was finally stopped (Hallelujah!) and I was transferred to a room on the postpartum hall. I was told when I got there I would be allowed to call the nursery and they would bring Cooper to me. I hesitated. No one had gotten there yet, and I was nervous about having him by myself. The nursery actually had to call me to see if I was ready for him. Looking back, this was the first clue that I wasn't quite okay. This was such a completely different experience from when I had Cole. Maybe that's why I didn't see it then.

When they finally did bring Cooper to me, they informed me that his bilirubin level was a little elevated. I wasn't concerned. I knew a lot of babies were jaundice the first few days after birth. As with Cole, I had decided to breast feed, at least for the first few weeks. Cooper was so tiny and weak, we had a hard time getting him to latch on, so I was pumping and feeding him through a bottle, 1 ounce at a time. His weight had dropped a couple of ounces, so they were closely monitoring how much milk he was taking. The nurses didn't seem to think this was anything out of the ordinary. Our visitors came and went and I sent Cooper back to the nursery so I could try to get some sleep.

The next morning, my doctor came to see me. She was not at all anxious to send me home. My blood pressure was still unstable, especially when I moved around. Simply getting up and walking to the bathroom would cause it to shoot up. She wanted to keep me there where they could adjust my meds and monitor me. Besides, she said, they would release Cooper when they released me. If I had to be readmitted, I would be separated from him. It was best if I stayed put. I was not her biggest fan at that moment.

That day, before they brought Cooper to me, the nurse from the nursery informed me that Cooper's bilirubin level was even higher and phototherapy had been ordered for him. They would bring him to me, but I would have to keep him under the lights unless I was feeding him. When they wheeled him in, he was completely naked except for a tiny diaper that swallowed him. They had little blinders on him that were stuck to his face by adhesive pads. Poor little guy! He was crying and flipping all over the place. He was not happy at all!

That was a busy day with lots of visitors! First my mom and dad came and brought Cole to stay with me until Scott came that night after work. When my dear friend Kim came to see us later that evening, she asked Cole what he thought about Cooper. Cole said, "I'm just glad he's my brother." It was so sweet. Cole had claimed him as his own and he would love him like crazy from that day on.

When Scott and his parents got there that evening, Scott went out and bought us supper from Macaroni Grill. We had just sat down to eat our food. I was excited to get to enjoy a really good meal. I think Sue was holding Cooper when his nursery nurse came in. She had come by at the beginning of her shift an hour or so earlier to take a blood sample from him to check his bili level. I started to explain that they were just visiting with him for a few minutes and we would put him right back under the lights when she stopped me in mid sentence. She informed me that Cooper's bilirubin level had increased again despite the phototherapy. She would be taking him back to the nursery immediately, where he would be placed under double lights. He would not be taken out for any reason: he would be fed under the lights, changed under the lights. I would not be able to see him or hold him until they got his level down. If they did not see a big improvement within the next few hours, they would be transferring him to Children's Hospital. She said all this as she practically jerked him away from Sue, put him back under the lights and wheeled him out the door.

It felt like a physical blow. I could not eat another bite of my food. I threw it in the trash and laid down on the bed and just cried. Sue and James took Cole home with them so Scott could stay with me. The hallways on the floor where we were staying were in a U shape, with the postpartum hall on one side and the newborn nursery on the other. This allowed me to see into the nursery from my window in my room. I could make out which bed was Cooper's because of the phototherapy lights. I sat in a rocking chair and stared at those lights until morning. I was terrified that if I went to sleep I would wake up and he would be gone. I knew if they took him to Children's, that meant that his condition was serious. He would not be going home anytime soon, possibly not until his due date, which was still over 5 weeks away. That was without a doubt the most difficult and longest night of all the nights I spent in that hospital. It was then that I realized my "not being okay" was more than the trauma of Cooper's birth.

What was clearly postpartum depression really set in after that. Cooper's blirubin level did not get any higher, but they continued to keep him in the nursery. I was not even allowed to feed him.  I would pump the milk and the nurses would give it to him in the nursery under the lights. Mom was keeping Cole with her while everyone else was at work, so I was completely alone. I was desperate to go home, but my doctor flat refused to discharge me. My blood pressure was proving difficult to get back under control and she would not take the chance of sending me home until she felt confident I would be okay.

Finally, on Saturday August 14th, 10 days after being admitted and 5 days after Cooper's birth, we were discharged home. I felt like I was being released from prison. I know that sounds a bit dramatic, but I was emotionally and mentally traumatized by all that I had experienced during my hospital stay. When admitted, I had weighed 170 pounds. On the day I was released I weighed 151 pounds. Physically I felt like I had walked through hell. I was nervous about caring for Cooper. He had lost over 7 ounces in the days since he was born. The day we took him home he weighed 4 lbs 1 oz. His bilirubin was still a little elevated. I was worried I wouldn't be able to get him to take the 1 ounce of milk every 2 hours around the clock the nurses insisted he had to have in order to not lose any more weight. I knew I was going to be on my own and worried I wouldn't be able to handle it. You would have thought I had never had a baby before! On top of everything, I had an 8 year old at home who would also have to be cared for. Shew! I had a lot on my plate!

Those first few days and weeks at home did not go smoothly. No matter how exhausted I was, I could not sleep at night. I began to have night terrors. I would wake up covered in sweat with my heart pounding out of my chest. I felt like I was losing my mind. Sometimes I would wake up and feel like I was dying. At the very worst moments, I would have been fine with that. Don't misunderstand, I was not suicidal. I was just having a really hard time seeing the light at the end of the tunnel.  I was having a hard time getting my appetite back and was not eating properly. As a result, my milk dried up after 3 to 4 weeks. In my eyes, I had failed. I did not want Cooper on formula so soon, but I had no choice. Cooper had not been doing great on my milk anyway. We would later find out that neither breast milk nor formula was going to meet his needs.

I was also having a hard time bonding with Cooper. Unlike Cole, he did not like to be cuddled or held. I quickly realized that he preferred to be laid down and allowed to drift off on his own rather than being rocked to sleep. This sounds awful, but it felt like rejection. I had not felt Cooper move a lot during my pregnancy( the placenta was at the top, blocking his little kicks) and had been so focused on work and then so focused on getting through the last weeks of the pregnancy, that I had never really had a chance to just be excited about being a mommy again. It was all very strange and different from the first go round. And yet again, I blamed myself. There must be something wrong with me. It was a very frustrating time.

The next few weeks would be a series of ups and downs. It would take time, but  Cooper and I would develop our bond and routine together. It would be unique and different, but just as strong as the bond I shared with Cole. I would grow to love my little Bugaboo more and more each day. I would be prescribed sleeping pills to help with the insomnia and night terrors. My appetite would return (with a vengeance!), my blood pressure would finally be controlled by the right combination of meds.

All would seem as it should be. I would return to work after six weeks, leaving Cooper in the loving hands of my mom. We had been told not to be concerned if he didn't meet milestones like other babies. He was a preemie, so it would take him a couple of years to catch up. He was healthy; nothing to worry about. We had no idea what we were facing. Thank God, we would not have to face it alone.

                                                    He was such a good sleeper then!

                                          Last one! Cooper in his Boppy. Still has it to this day!


Thursday, April 4, 2013

Life with Cooper-Part 3: Welcome to the World Cooper!

I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, And that my soul knows very well.
                                                                                Psalms 139:14

It is hard to find the words to describe the days I spent at Fort Sanders Regional Medical Center leading up to Cooper's birth. I can honestly say that it was the most difficult period of time I had experienced up to that point. When I was admitted to labor and delivery on 8-5-04 for preterm labor and chronic hypertension, I had no idea what I was facing. It was by the power of God alone that both Cooper and I came out of that hospital unharmed.

That first day, when they were unable to stop my labor with Brethine, I was given steroids to help Cooper's lungs develop more quickly. I was also introduced to magnesium sulfate (aka liquid hell). This drug is given through an IV over a 24 hour period. Once it hits your system, it makes you feel like you have a really bad case of the flu: your body aches, your bones feel like glass, you become flushed and sweaty, and you feel as if you are burning from the inside out. What makes it even worse is you are not allowed to get out of bed while you are on it, and you can have nothing to eat or drink; only ice chips. Initially the contractions continued, so they increased the magnesium sulfate even more. I felt like I might be dying. I had never experienced anything like that before. It was awful. 

Sometime in the early hours of 8-6-04, the labor finally stopped. The doctor decided to admit me to the antepartum unit (this is where mother's in danger of preterm labor go to WAIT on total bed rest.) His intentions were to keep me still, monitor me, collect a 24 hour urine to check my kidney function and buy time for Cooper. Each day they were able to keep me from delivering was another day Cooper had a chance to grow and develop in the safety of the womb. 

On Saturday the 7th the contractions resumed. By this point my cervix had started to thin and had dilated to 2cm. They transferred me back to labor and delivery and restarted the magnesium sulfate. This time I knew what I was in for, and it took everything in me not to refuse it. I was emotionally and physically spent. I was warring with conflicting emotions: on one hand I wanted to do everything possible to give Cooper the best chance at being born healthy. On the other hand, I just wanted it to be over. 3 days in the hospital with no rest and hardly any food and all I wanted was to go home. By this time, I knew they meant to keep me until after the delivery, which could potentially be weeks. Of course, the safety of my unborn child won out. Another 24 hours of liquid fire being pumped into my veins drip by drip. It did its job. The labor stopped, and on the 8th I was transferred back to the antepartum unit.

The morning of Monday the 9th, I awoke to a blinding headache. Despite being on complete bed rest, my blood pressure had shot up to 170/100. I was wheeled over to my doctor's office to have yet another ultrasound and a biophysical profile (a test that measures the health of the baby). The profile found that Cooper looked good, but the amniotic fluid level was dropping. The placenta was wearing out due to my sustained high blood pressure. It was clear that Cooper was going to have to be delivered soon. My doctor had been off this entire time and was not scheduled to be back in the office until later in the week.  Her associates had been caring for me in her absence. I really wanted her to be the one to deliver Cooper. The plan was to basically knock me out to get my blood pressure to come down and try to keep me stable until she returned to work.

Back in my room, the nurse gave me a sleeping pill, had me lay on my left side and turned off the lights. I was miserable. Even 2 more days of this seemed like forever. Dr. Myers was the doctor on call that day. At the end of his shift he came over to check on me. He took my blood pressure himself. It was 190/100. He set down beside me and just stared at me. He said that my body was telling us that it was done being pregnant. I told him I agreed. He asked if I was ready to have this baby. He said he had called Dr. Tally (my doctor) and she agreed that we shouldn't wait. I suddenly got really nervous. I wanted this! I wanted all of this to stop! But would Cooper be okay? There was no way to know until he was born. I asked him if I got Scott on the phone (he was at work), would he explain to him what was going on. I don't know why. I just couldn't tell Scott myself. That's just what he did. Dr. Myers asked Scott how quickly he could get there. I listened as he explained to my husband that we were going to get this thing started and to get there as quickly as possible. We were having this baby...TONIGHT!

Things happened really fast after that. I was transferred for the final time back to labor and delivery. A Pitocin drip was started to induce my labor. Then I was told I would have to be on Magnesium Sulfate AGAIN! My blood pressure was so high, I was at risk for seizures. So great, I was going to have to go through childbirth while feeling like I had the worst case of the flu imaginable with every orifice of my  body on fire! At least it was almost over!

Scott arrived and soon after I was given an epidural. (Let me stop right here for a second and address those of you who do not believe in epidurals during delivery. God bless you. I had one with Cole that was put in too late and didn't work. I felt everything. After all I had been through in the last few days, I was prepared to get on my hands and knees and BEG for that epidural! I believe I would have allowed the Anesthesiologist to stick it in my eyeball if I thought it would help me feel less pain. To each his own...)We called our families and friends to let everyone know what was going on and waited. 

Things were progressing on schedule. A Neonatologist came over from Children's Hospital (the facility is across the street from Fort Sanders) to explain to me and Scott what would happen after Cooper was born: a team from Children's would be in the room during the delivery. They would immediately assess Cooper, let us see him for a few minutes-if possible-and then he would be transferred to the neonatal unit at Children's where he would be kept, probably until his due date. There never seemed to be a possibility of him being allowed to stay at Fort Sanders with me. As a respiratory therapist, I knew that he would likely be intubated and put on a ventilator if he was in any respiratory distress. He would surely need oxygen therapy at the least. Fear of what might happen to Cooper once he was out began to flood my mind. But I had done clinicals during respiratory school at the neonatal unit that he would be going to and I knew that he would be well cared for.
Sometime later that night, Cooper's heart rate began to drop with each contraction. I didn't know it then, but a surgical suite was being prepared. The doctor had decided that active labor was too risky for Cooper, and the safest course at that point was to deliver him by C-section. Just as the nurse was bringing surgical scrubs to Scott, the doctor decided to try one last alternative: to instill water around Cooper to take pressure off of him and the umbilical cord during the contractions. It worked and we were able to proceed with a normal delivery. The outcome may have been very different for Cooper had they performed that C-section. Studies show that preemies who are born via C-section are 30% more likely to develop respiratory distress syndrome, which can cause long term problems for the baby:   a long stay in the neonatal unit, high levels of oxygen therapy which can cause retinal detachment that often results in permanent loss of vision, permanent damage to the lungs, the development of asthma...the list of possible problems go on and on. Do I believe God intervened on Cooper's behalf at that moment? You better believe I do!

Everyone was anxiously awaiting Cooper's arrival: my mom and sister were there with me as well as Scott's mom, my niece Amber and, of course, big brother Cole. Everyone else had gone home with plans to return the next day. Around 2:00 in the morning of August 10th, I literally felt Cooper move down into position to be born. I had not had the benefit of an epidural the first time around, so I was shocked by this sudden pain. We shooed everyone out of the room so the nurse could check me and, sure enough, I was fully dilated and ready to go. I had this great nurse, whose name I regretfully do not remember. I looked at her in horror and said, "I have an epidural! I'm not suppose to feel anything!" She looked at me and said, "Oh honey, epidurals don't help with this part. You're gonna feel this!" Oh goody! (Okay, I was a bit of a wimp back then!) My sister had  arrived a couple hours earlier and was to attend the birth. She was told, "no pictures until after he is born and only when we say so." They were afraid he might be in distress or worse. People started filing into the room. Every nurse on the floor, the anesthesiologist and the team from Children's were all there. Including Jennifer (my sister) and Scott, there were approximately 20 people in the room watching me give birth. So much for modesty!

I was finally told to push. After only 2 or 3 pushes I was told to STOP! The baby was coming and the doctor was not there yet. Dr. Myers came strolling into the room (I'm not kidding-only doctors can stroll like that.) He sat down on a stool in front of me. One more big push and at 2:18 am Cooper burst into the world! (I say burst, because that's what happened. My sister said she couldn't believe the doctor didn't drop him on the floor he came so fast!)

At first, he didn't cry. When they lifted him up so I could see him, all I could say was, "He's so tiny!"His APGAR score (assesses Appearance, Pulse, Grimace, Activity, Respiration) was 8 on a scale of 1 to 10 at 1 minute. As they were cleaning him off, he started to make this tiny mewing sound that got stronger and stronger. At 5 minutes his APGAR score had gone up to 9. Surprisingly, the Children's Hospital team did not take him! They felt he was stable enough to go to the regular nursery. Another miracle! They whisked him off to the nursery to be weighed, measured and bathed. After all that waiting, it was all over in less than 30 minutes. He was here and he was okay. He weighed 4 lbs 8.6 oz  and was 17 I/2 inches long. He had blue eyes and a head full of dark hair. He was absolutely beautiful and absolutely perfect. God had seen us through.

Friday, March 29, 2013

Life with Cooper-Part 2: Ready or Not...

For you created my inmost being; you knit me together in my Mother's womb. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. Psalms 139:13 & 16

To say that finding out I was pregnant with Cooper was a surprise would be a bit of an understatement. It was January 2004. Cole had just turned 7 years old the month before. I was fast approaching my 30th birthday and, though we hadn't been trying to get pregnant, we hadn't been doing anything to prevent it for quite some time. I had taken dozens of pregnancy tests over the years, but it had just never happened. I was beginning to think that maybe Cole was going to be an only child, although my heart still ached for at least one more baby.

 By this time, I was working for a durable medical equipment company that specialized in respiratory equipment and care. I had just accepted a position as Location Manager at our Morristown, TN site. That very night, I went home and took yet another pregnancy test. I was late, but that was not unusual for me. My cycles had never been what anybody would consider "normal". This happened so frequently that I actually had 4 pregnancy tests on hand. I really expected it to be negative, but there was always that little bit of hope, you know? So before I let those hopes get too high, I would take the test, see that it was negative, and move on. Imagine my shock when I saw that little blue plus sign! I just stared at it. My heart started to pound. I took another test. Blue plus sign again! I took another one...and another. Okay, so I had to go drink something in between, but I took all 4 of those pregnancy tests! I believe if I had had more I would have taken those too! I just knew it had to be a mistake!

I remember sitting on the stairs watching for Scott's headlights to come down the driveway. When he finally walked in, I met him at the door and said, "I'm pregnant." and burst into tears. It wasn't that I was unhappy, it was just too much. Now? I'm pregnant NOW? I had just accepted that new job, and I would be 30 when the baby was born, and I had gotten rid of ALL the baby stuff, and, well, it had been a really long time since I had been around a baby, much less had to take care of one, and, and, mind was just racing. But I would come to know that God's timing was perfect and deep down I was really, really happy. Scott was too. Cole, however, was not. When we told him he got mad! He did not want a new baby coming in and taking any of his attention away. He had been an only child for 7 years, after all. Nope, no baby. No, he did not want a little brother or sister. And no, he did not want to talk about it. Period. Oh well! He'd come around. He'd have to, because, ready or not, we were having a baby!

During my first pregnancy with Cole, my blood pressure became an issue within the first trimester. At 23 weeks I went into labor for the first time. I had problems from that point on, taking Brethine to prevent preterm labor, eventually going on bed rest and then being induced at 38 weeks. After he was born,  the high blood pressure persisted and I was officially diagnosed with Chronic Hypertension. I was 22 years old. Eight years later, we knew the likelihood of me having a normal pregnancy was low. As expected, my blood pressure began to creep up with each prenatal visit. By my 20th week, my doctor started me on blood pressure medication. This began a battle we would fight for the next 14 weeks. My blood pressure would not stay down. Any activity or stress made it shoot up to dangerously high levels. I began to have dizzy spells and swelling in my legs and feet. By May, my doctor was strongly advising me to slow down and cut my work hours back. My new job as Location Manager was proving to be a bit taxing on my little pregnant body. The site was a one hour drive from our house-one way. We were preparing for a big JCAHO inspection which required me to work 10-12 hour days to make sure every "i" was dotted and every "t" was crossed. It was a big deal and my first big responsibility as a location manager and I meant to do my absolute best. I was an idiot, and I am lucky I didn't kill me and Cooper both in the process! The Lord definitely had his hand on me during that time. I can clearly remember getting into my car to drive that hour home with my feet so swollen I would have to take my shoes off and I could barely feel the pedals because the bottoms of my feet would be numb!

I just knew I was having a girl! I had this crazy idea that I would name her Cloe (Chloe without the h-I said it was crazy!) so that her and Cole's names would have the same letters. I was so sure it was a girl that while in the Tommy Hilfiger outlet in Pigeon Forge one day,  I picked out her outfit to go home from the hospital in, complete with matching bib, booties and blanket! It was pink and adorable. Scott made me put it back. He never doubted for a minute it would be anything but another boy. Cole too had decided it was a boy. A boy whose name would be Enoch! That's right, Enoch from the Bible. Cole was attending Gateway Christian School at the time and that is who they were studying. He was so adamant about it that I was afraid no matter what we named this child, girl or boy, it would be called Enoch.

On the 29th of April, Scott and I went to find out the sex of our baby. I took my Big Book of Baby Names and searched for the perfect girl's name (there was no need to look at boys names, I was sure!) I anxiously waited for my name to be called for the ultrasound. I practically jumped on the table. I could not wait to prove Scott wrong! The ultrasound tech started bantering back and forth with us as she squirted jelly on my belly and started taking measurements. "Get on with it!" I was thinking. "You do want to know what it is?" she asked. Yes, yes, yes! I can't remember if she asked us what we wanted it to be or if we just told her, but when she looked at Scott, I was a boy. I would be a big liar if I told you I was not disappointed. I knew this was likely the last child I would have and I wanted a little girl so badly. Scott was thrilled, and after about 5 minutes, I was too. After all, I did know a thing or two about taking care of boys. I knew Cole would be happy. As soon as we got in the car I pulled that Big Book of Baby names back out. The middle name was a no brainer: Cole's first name is James after Scott whose whole name is James Scott. This baby would also be named after his daddy; Scott would be his middle name. I liked the name Riley, but Scott vetoed that one. So, I went to the A's and started calling out names randomly. When I got to the C's and called out Cooper, Scott liked that one. He had worked with a guy a few years back who had a son named Cooper and had liked it then. Cooper Scott sounded good to us both. Cooper Scott he would be.

After the inspection in June, I finally consented to cut back my hours at work. First to 4 days a week and then to half days. I was intermittently put on bed rest when the pressures got dangerously high. Medicines would be increased or added, the pressures would come down a bit, then back to work I would go. I was trying to work as long as I possibly could. I knew I would be off for at least 6 weeks after the baby was born. I didn't want to inconvenience other managers any longer than absolutely necessary, as they were having to take care of all the managerial duties at my location as well as their own while I was out. Cooper's official due date was September 19, 2004. My doctor was determined to get me to at least 38 weeks and then induce. I had six ultrasounds during my pregnancy. The last ultrasound showed a decrease in amniotic fluid, which would be one of the factors that led to my labor being induced 6 weeks early. But in every ultrasound Cooper seemed completely normal and completely healthy. We had no reason to believe anything was wrong with our little guy.

On August 5th, I went in to my doctor's office for a blood pressure check. While I was there they put me on a monitor and found that I was contracting at a pretty regular rate, 5 to 6 minutes apart. I was 33 weeks pregnant. My doctor was off that day, so the doctor on call sent me over to labor and delivery.  The plan was to give me some brethine, monitor me until the contractions stopped and then send me home. This was totally unexpected, but I had been through things like this when I was pregnant with Cole. I figured I would be there 2, 3 hours tops and then go home. Unfortunately, things went from bad to worse. I would not be going home again for 10 long days. And when I did go home I would be accompanied by a very tiny, very premature newborn. Ready or not, we were about to have this baby!!