I Never Imagined

In the past few months, I've had several new readers visit my blog. I'm making new online friends through a Cerebral Palsy support group and lots of visitors are coming by way of these new photography challenges I'm participating in. And since I've found that several of them are curious about Shawn and Clayton's story, I've decided to repost my "I Never Imagined" album that I made way back in 2005. So many things have changed since then--my scrapbooking style for one (some of these pages are dorky looking I know!!), but mostly I've learned that my perspective is ever evolving. But despite that, my journaling in this album is definitely a record of all that happened beginning August 10, 2003.

In the Spring of 2003, Brian and I learned that we were going to be the parents of twins. Not long after that, we were told that both babies were boys—twin boys! What a blessing! We knew our lives were in for a big change. But when the twins were born four months early (24 weeks gestation) on August 10, 2003, we never knew just how drastic the change would be. Shawn Phillip weighed 1 pound, 12 ounces and was 12 inches long. Clayton James weighed 1 pound, 8 ounces and was also 12 inches long. On that day our seemingly normal existence became the uncertain road that we now call our life. Both babies were extremely sick and every day presented new challenges—from brain bleeds to collapsed lungs, they battled it all. Clayton was the sickest of the two—his condition seemed to waver between near death and not so near death. Shawn had bleeding in his brain, but seemed to be more stable. It was such a surprise when the doctors called us to the hospital on August 27 to tell us that Shawn had contracted a staph infection and they didn’t expect him to make it. We spent that night holding him tight and praying desperately for healing. Despite everything, we had to say goodbye to Shawn on August 28 at 9:35 a.m. Clayton continued to battle for his own life. He had many surgeries and contracted several infections. We lived in fear of losing him too. But finally, after six and a half months in the NICU, Clayton came home to us. He weighed just over 8 pounds and was still very sick. We made many more trips to the hospital over the next six months. Although Clayton is now stable, our life is far from normal when compared to most families with a two year old. This is just a glimpse of the life that I NEVER IMAGINED.

On the night of August 8, 2003, I couldn’t sleep. I couldn’t get comfortable in the bed and even tried sleeping on the couch. When I woke up the next morning, I thought nothing of it until I discovered I was bleeding. After calling my doctor, husband and mom, I went to the hospital—never returning to what I now call my “former life.” My labor progressed despite doctors’ efforts. My twins were determined to come out into the world no matter what. I was transferred to University of Arkansas for Medical Sciences in Little Rock because they are leaders in taking care of preemies. I ended up undergoing a caesarean section because one of the babies was transverse. On August 10, Shawn Phillip was born at 1:32 a.m. He weighed 1 pound, 12 ounces. Clayton James was born at 1:36 a.m. and weighed 1 pound, 8 ounces. Both babies were 12 inches long. They were so sick and because they were born so early (24 weeks gestation), we were told they had a 1-2% chance of living. We were constantly praying that God would help them survive. We began living hour by hour as their conditions seem to change constantly.

Shawn’s Battles: • Respiratory Distress • Intraventricular Hemorrhages • Collapsed Lung • MRSA (Methicillin-resistant Staphylococcus Aureus)

Clayton’s [Major] Battles: • Respiratory Distress • Pulmonary Hemorrhage • Intraventricular Hemorrhages with Hydrocephalus • PDA Ligation • Perforated Bowel • Necrotizing Enterocolitis (NEC) • Retinopathy of prematurity (ROP) • Bronchopulmonary Dysplasia (BPD) • Osteopenia • GI/Feeding Issues • Shunt malfunctions • Hernias • Airway Blockages • Delayed Development

After being at the hospital all day on Wednesday, August 27, I got a call from the resident taking care of Shawn and Clayton. He said that Shawn was sick—real sick. His actual words were “we’re not doing compressions yet, but it’s getting close.” I almost fainted! I had seen Shawn less than an hour before and he seemed a little pale, but otherwise fine. I was literally scared to death and went into a panic. I had trouble getting a hold of Brian and that made my panic even worse. Eventually I got him on his cell phone and I went to pick him up so that we could rush to the hospital. I was so scared that my baby was going to die before I could hold him and love on him. That was the only thing I could think about. When we finally made it to the hospital, there was a lot of activity at Shawn’s bed. We were told that he had contracted a staph infection that was deadly to him—there was no antibiotic to combat it. Shawn was pale and his heart rate was up. His blood pressure and oxygen levels were falling. The doctors had no idea how long he would live, but they told us that it was probably a matter of hours before he died. We were in complete shock—God would surely not take our baby. We were “good” people, bad things can’t happen to us. We began to pray. Everyone on our church’s prayer partner list was praying too. As Shawn’s condition worsened, we called our pastors in to pray over him and anoint him with oil. We were doing exactly what the Bible says to do in this situation. We just knew that God would honor our prayers and faithfulness. But Shawn just kept getting worse. Eventually, the doctors decided that it was time for me to hold him. As I held him, all I could do was sing to him. I wanted him to know how much I loved him. I had to pack so much love into these few hours. As I sang, his stats actually became better and leveled out. The doctor smiled and said that Shawn liked being held. He did. And I loved holding him. He was doing so good that we decided to try a couple of more medications which meant putting him back in his bed. As soon as he was back in his bed, his condition started to deteriorate again. So Brian and I started taking turns holding him. We took pictures with him and just tried to savor what little time we had left with him. All night, we took turns just holding and loving him. His oxygen level just kept getting lower and lower. And his kidneys were failing—his diaper had been dry for hours. His poor little body was swollen and purple from all the fluid and medicine that had been pumped in him. At 9:35 a.m. on August 28, Shawn’s monitors were blaring and blinking zeros. Zero heart rate. Zero oxygen saturation. I looked at the nurse and asked her if it was real and she said yes. We could hear the liquid in his lungs. The medicines had saturated his whole body. As the doctors were working furiously, Brian and I just kept kissing Shawn and telling him how much we loved him. We wanted him to know that he was and will always be loved. I only hope that our voices were the last thing he heard.

As I held Shawn for both the first and last time, I sang these words to him: Before you had a name, or opened up your eyes, Or anyone could recognize your face; You were being formed, so delicate in size, Secluded in God’s safe and hidden place. With your little tiny hands, and your little tiny feet, And little eyes that shimmer like a pearl; He breathed in you a song and to make it all complete, He brought the Masterpiece into the world. You are a Masterpiece, a new creation he has formed. And you’re as soft and fresh as a snowy winter morn. And I’m so glad that God has given you to me. Little Lamb of God, you are a Masterpiece. ~from Masterpiece, by Sandy Patty~

On August 30, 2003, I buried my first born. I made it through the service relatively well. I was basically numb and also still worried about sick little Clayton in the hospital. But as time has passed, my real grieving has begun. I miss him. I miss seeing what he would have become. He was named after my father. He had my long legs. He had my big toe. He had his father’s strawberry blonde hair. What would all of those things become in the future? I suppose I grieve mostly for myself simply because the future I looked forward to has changed so much. I shouldn’t grieve for Shawn. He is completely healed and living in Heaven awaiting our arrival. But it’s hard to look at it in such a positive way when you feel so cheated. Would he have been tall like me or shorter like his Daddy and brother? Would he have liked music as much as Clayton? Would he have been a wakeboarder like Daddy or a slalom skier like Mommy? Would he have been a risk taker like Daddy or a rule follower like Mommy? All of these questions have no answer. We buried them on that day along with his body. I suppose I will never get over his death, but I am learning to work through my grief instead of letting it stop me in my tracks.

When the boys were born, doctors estimated they would be in the hospital three or four months. But they never expected Clayton to develop every complication and infection that preemies are prone to! One doctor told us we had a better chance at winning the lottery than having a child with all the conditions and illnesses Clayton had! Since Clayton was in the hospital for so long, I developed a very boring daily routine. Visiting hours didn’t start until twelve noon. This was perfect for me because I’ve always been a late sleeper. When I was finally ready to go, I usually picked up my mom on the way to the hospital. We would spend the afternoon with Clayton and then try to head home around five or six. Then, if Brian wasn’t too tired, we would head back to Little Rock for the night so that Clayton could have some “Daddy time.” Brian was always so worn out from working all day that I would have to drive us home late at night. My nights were horrible—I couldn’t sleep at all for thinking about Shawn or worrying about Clayton. I would usually just stare at the television until my eyes finally closed from exhaustion. Every once in a while, I would take a break from my routine. Clayton had five primary nurses (unheard of in the NICU), so I basically knew who was taking care of him at all times. If I was extremely tired or just stuck in a depressed mode, I would call them and tell them I wasn’t coming that day. I just felt so blah some days that I couldn’t even get out of the bed. I was lucky to have such an awesome team of nurses taking care of Clayton—it was so nice to lean on them and trust them with his care. Eventually, as Clayton got better and better, I felt I needed to be with him all the time. He was becoming more aware of his surroundings and he wanted to be out of the bed a lot more. I wanted to be the one holding him and talking to him. I wore myself out and put a lot of miles on my car going back and forth to the hospital, but it was well worth it. Clayton knew exactly who I was and when he finally came home, he looked to me—HIS MOMMY—for comfort.

After 196 days in the NICU at Arkansas Children’s Hospital, Clayton came home to us on February 21, 2004. We had waited so long for this day that it almost seemed surreal. I can’t even say that I was excited—I was more in the mode of “JUST GIVE ME MY BABY SO I CAN LOVE HIM AND TAKE CARE OF HIM!!” I was tired of having an audience when I was with Clayton and tired of only being able to spend our quality time in a noisy intensive care unit. Clayton had been at the hospital for so long that I felt like I was sharing him with too many other “mothers.” Everyone at the hospital loved him and spoiled him rotten, and I’m thankful. But I had come to the point where I was tired of sharing and I wanted to be the one in charge of Clayton’s caretaking. Clayton didn’t get to stay home long before he had his first relapse (four short days), but it sure felt nice to hold him when I wanted instead of just during visiting hours.

Clayton spent a total of three months on the ventilator. One of the major side effects and setbacks for “ventilator babies” is an extreme oral aversion. We didn’t see this at first with Clayton, but over time his mouth became more and more sensitive to any touch. I pumped my breast milk for five months in the hopes of finally being able to feed Clayton myself. The doctors encouraged me since this was the one thing that only I could do for Clayton. When he first began to take milk Clayton was fed through both an OG (oral-gastric) and NG (nasogastric) tube. These were just small tubes that went down Clayton’s throat and into his stomach. Eventually I was given permission to try and breast feed. I was literally scared to death! I had developed quite a relationship with my little breast pump, but feeding a baby was going to be unpredictable! Clayton seemed ready to eat although his sucking and swallowing abilities were not very good. And as the days passed, Clayton wanted less and less to do with breastfeeding. I was heartbroken. I had pumped for so long just for this chance and he couldn’t do it. But I kept telling myself that the milk was what was important (the doctors insisted that breast milk is the best for babies) and we started trying bottles of breast milk. Again Clayton showed positive signs and ate from the bottle. But just like before, he started gagging and choking on the milk. His whole suck, swallow, breathe mechanism in his body was messed up. He just couldn’t handle doing all three at once. After lots of prayer and debate and horrible feeding sessions, we decided to give permission for a g-tube (gastronomy tube). This is a tube that is placed directly into the stomach so that the mouth can be bypassed all together. G-tubes are commonly called buttons, so I guess you could say Clayton has a belly button and a feeding button! Currently, Clayton is fed three ounces an hour for 16 hours a day. He is fed a special prescription formula because we have since found out that he is extremely allergic to milk. I mix the formula in bulk and it is pumped into his stomach over time. His button has to be cleaned very well because it will start to smell from all the gastric juices in his stomach. I also keep gauze wrapped around it to keep the juices from leaking out. Tube feeding is not as bad as I thought it would be, but I guess I’ve gotten used to it. The only annoyance is dragging that cumbersome pole around the house and the times when the button actually pops out of Clayton’s stomach. We are able to replace it ourselves, but it makes a huge mess. Clayton is slowly showing signs of wanting to eat orally and works on this with both us and his therapist. Eventually he will eat on his own, but we have a long road ahead of us.

One of the major risks for premature babies is Intraventricular Hemorrhage. The blood vessels in their brain are so delicate that they burst and bleeding occurs in the ventricles of the brain. This happened to Clayton on his fifth day of life. He had grades three and four bleeds (four being the worst). As the blood dissolves and breaks down in the ventricles, it starts to block the natural flow of cerebrospinal fluid (CSF). Normally the CSF flows from the ventricles down through the spinal cord and is absorbed by the body. This is a natural cycle that occurs in everyone’s body. Clayton’s body seemed to handle the bleeds well at first. His ventricles stayed a normal size for quite some time before we started to see problems. But after about a month, his ventricles started to enlarge because the CSF wasn’t flowing out. The neurosurgeons started doing daily spinal taps to help move the CSF. Eventually even this stopped working. The doctors had to start drawing the CSF directly out of Clayton’s head with a super thin needle. This was risky because the needle was inserted directly into his brain. Because the draining was having to be done more and more often, we were told that Clayton would need a shunt placed in his head. As parents, we were extremely stubborn about the shunt. Shunts are a lifetime thing. We were told by doctors that they don’t always work well and that revisions would need to be done from time to time. We felt like we were setting Clayton up for a lifetime of surgeries. But what were our choices?? If Clayton didn’t have the shunt, his head would continue to grow and grow (since his bones hadn’t fused yet). We reluctantly agreed to the shunt. After we agreed to the surgery, we started praying. We asked everyone to pray that the Lord would heal Clayton’s little brain so that he wouldn’t have to have this surgery. And it seemed to work!! Clayton stayed sick for so long that he couldn’t go into the operating room. Every time a surgery was scheduled, Clayton would get a new infection. We hated to see Clayton sick again, but we just knew God was answering our prayer! The surgery was scheduled and cancelled two or three times before we had another major talk with the neurosurgeons. We asked the doctors to give Clayton one more chance. They were draining his brain less and less, so they agreed to give him a week to see if his ventricles could handle the draining on their own. We were so hopeful, we just knew God had put this surgery off in order to perform a huge miracle. But we were wrong. Clayton’s body just couldn’t handle moving the CSF on its own. His ventricles were still enlarged and it seemed they would never actually work on their own. So on December 26, 2003, Clayton had a VP (ventriculo-peritoneal) Shunt placed in his head. This shunt drained the fluid through a tube and down to his abdominal cavity, where it was absorbed by the body. But that is only the BEGINNING of the story!! Just a month after the shunt was placed, it malfunctioned. Brian and I were so disappointed—this was what we had feared would happen. Clayton had his first shunt revision before he ever even left the NICU. His second revision was just five days after he came from the hospital! We couldn’t believe it—our worries were becoming a reality. Clayton ended up having three more revision surgeries before doctors decided that something needed to change. Clayton’s abdominal cavity was full of scar tissue from his other surgeries (for his GI problems) and there just wasn’t any place for the CSF to drain. That is why the shunt kept clogging up. Doctors recommended replacing Clayton’s VP Shunt with a VA (ventriculo-atrial) Shunt. This shunt’s tubing drains the CSF into a vein. The CSF enters the bloodstream and is eventually pumped throughout the body and absorbed. This shunt is risky, because any infection can be dangerous since it is in the bloodstream. But we really had no other choices. We consented to the VA Shunt. The VA Shunt was an answer to prayer. Clayton hasn’t had any shunt-related problems since it was placed! At his last neurosurgery check-up, the CT Scan showed that his ventricles were smaller than ever—this means the shunt is working beautifully! We have finally gotten used to being at home instead of making frequent trips to the hospital for another surgery. Clayton is getting the chance to grow and develop without having to constantly recover from surgery.

Because Clayton’s lungs were so underdeveloped when he was born, he immediately went into what is called Respiratory Distress Syndrome. As a direct result, he developed a chronic lung disease known as Bronchopulmonary Dysplasia. He will have to deal with BPD for many years to come. Every other Wednesday, Clayton’s empty oxygen tanks are picked up and new ones are delivered. There are three different sized tanks. The largest tank is for use at home. The other two are for going out and about. We also have a machine that separates oxygen from normal room air. We use this machine when Clayton needs a higher oxygen flow. Clayton’s oxygen is delivered to his lungs through a nasal cannula. It needs to be changed at least every two weeks, and sometimes even more often. It just depends on the level of Clayton’s nasal secretions (A.K.A. SNOT). Lately the cannula has become a nuisance in Clayton’s opinion, so it is a constant battle keeping it in his nose. His new game is to pull it out just so we can put it back in his nose. He does it over and over again until we find something else that grabs his attention. He’s definitely being a typical two year old when it comes to this mischief!

Every night, I put this monitor on Clayton’s foot. It measures his heart rate and the amount of oxygen saturation in his blood. A good saturation level is anywhere between 95-99%. Clayton’s pulmonologist is happy if he stays above 92%. We get the best reading when Clayton is completely still, so I like to use it when he’s tired or asleep. The alarm will beep (loudly) if he falls below 90%. This happens a lot since Clayton pulls his cannula off during the night. The alarm can get very annoying—going off when he moves or when the probe comes off his foot. It goes off so often that I can reach over and silence it, then put the cannula back in Clayton’s nose all without ever opening my eyes! But as annoying as it is, it’s still a necessary evil for the parent of a child with lung disease.

Clayton loves to take a bath, but it can be hard work for the person giving him one. For several months we used an infant bathtub, but Clayton soon grew out of it. It became impossible to bathe him AND try to hold him up out of the water. I was so glad to see this bath chair arrive—we have a much easier time bathing Clayton these days.

When Clayton first came home from the hospital, he had two or three doctor’s appointments a week. There were so many doctors taking care of Clayton that I had to pay close attention to everything—I was their connection to each other. Thankfully, Clayton’s health is no longer so critical that we have to see doctors weekly, but we still have appointments monthly with specialists for his longer term problems.

Here I am, a healthy 29 year old, and I drive around with a “Handicapped” tag hanging from my rearview mirror. When Clayton first came home, I was reluctant to get one of these for my car, but as he grew it became harder and harder to move him around and I decided that I could use one! It helps so much to have the extra space a handicapped parking spot provides—I need it while loading Clayton and all of his stuff in and out of the car. I never thought I would be thankful for something as simple as a handicapped tag, but I am!

Clayton has therapy eight times a week. The therapists come to our house since Clayton is on oxygen and since he has so many therapy sessions. The main goals are to help Clayton learn to communicate, eat on his own, and become ambulatory. He has accomplished so much in the last year and a half, but he still has lots of hard work ahead of him. We know he can do it!

Clayton has so much stuff! We are so thankful that so many therapeutic devices are available today. We have seen major progress after using this equipment. And he is such a good sport about being strapped in—he loves to sit and stand—he gets a whole different view of the world!

On Clayton’s second birthday, his wheelchair was officially ordered. I never thought I would be so glad to see a wheelchair brochure! Clayton is getting heavier and heavier and he is very close to growing out of his stroller, so a wheelchair is definitely what we need. If we go anywhere for any length of time, Brian and I have to share the load (literally) because Clayton is basically just dead weight. My back hurts almost all of the time now and I’m sure it’s from carrying Clayton (and his oxygen and his feeding pump). And although I was so glad to see the order form, I immediately started crying the minute the therapist left the house. It was definitely a reality check for me as a parent. My child can’t walk and run like other kids. He is totally dependent on others for his mobility. The day we ordered the chair was the day that this actually sank in for me. The good news is that Clayton may not always be in a wheelchair. He shows lots of potential for walking with a walker and maybe eventually unassisted.

When I finally came to the realization that Clayton’s disabilities were not temporary, but a long term issue, I was extremely disappointed and very jealous of my friends and their families. I thought we were destined for a life spent isolated inside our house and that Clayton would never enjoy activities that other children do. But I was wrong. We have done our best to expose Clayton to a variety of places and activities. He has been to Colorado, Las Vegas, and even the Grand Canyon. He’s made a couple of trips to Florida to see family. He loved sitting in the sand on the beach and soaking in the ocean. We also have a boat and he’s been to the lake several times. In fact, we spent most of the summer weekends on the boat and Clayton absolutely loved it! He laughs and screams while we go across the lake—he loves the wind and all the bumps from the waves. He also loves to just relax in the water—he gets so relaxed that he has almost fallen asleep in his little floaty boat! It’s quite a job to haul all the stuff that we need when we go somewhere with Clayton—the car is usually packed to the gills and we can barely fit ourselves in—but it’s all worth it just to be able to see the smile on Clayton’s face when he discovers something new that he enjoys. We’ve also tried our best to get Clayton around other kids. He has cousins to play with and lots of other kids at church that he can play with. He’s really not able to play with them, but he can watch. I’m hoping that watching other kids move around will help keep him motivated to become more independent. I do still get down sometimes. If we’ve been with our friends and their very active toddlers, I come home and get really sad. It’s depressing to see all those other kids running crazy and Clayton’s just sitting and watching. But no matter how hard it is for me, I’ll keep exposing him to other kids and their toys and games, because I know he learns from them and enjoys watching them. Music is what Clayton enjoys the most. I never thought that we would get so much pleasure from singing and playing music, but it truly is his favorite thing to do. He squeals with delight if his daddy plays the guitar and even plays his own little guitar right along with him. Clayton can spend hours listening to the guitar and loves to listen to people sing. He even likes Karaoke! We’ve used our Karaoke machine at get-togethers and Clayton loves to listen to all the music. We’ve learned to work around Clayton’s disabilities. Things may be harder for us to do, but we can still go anywhere and take Clayton along with us for the fun.

It’s been a little over two years since the boys were born. I still find myself going through the roller coaster of emotions that come with grieving the loss of a child and our loss of “normalcy.” I get angry, sad, lonely, and I am forever asking the question, “why me, Lord?” I spend a lot of my time simply fighting the urge to throw fits of rage and jealousy when I see my friends with their families. I’m getting better at dealing with my anger and sadness, but I think I will always have a small feeling of being cheated. I just knew that Brian and I would have the perfect little family with kids who were smart, musical, and athletic. (Yes, I’m a planner!) But God has taught me that he is in charge and that blessings can come through the most difficult of circumstances. We were blessed to have eighteen precious days with Shawn, while some parents never even have that long. And Clayton has taught me that there’s no need to worry about the small details in life. And as hard as it can be to deal with Clayton’s disabilities, he’s simply perfect in my eyes—I wouldn’t have him any other way. We will never know why God chose our family for this particular journey—we can only accept the challenge with an open heart and willing spirit.

For they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk, and not faint. Isaiah 40:31

Wow. So much has changed since then! My grief for Shawn is not near as raw, although sometimes the smallest event can open the wound up in a brand new way . . . and Clayton's long term goals are so different from just four years ago. And while we have always been proactive, Brian and I are so much more educated on cerebral palsy and what it entails. As parents of a special needs child, you definitely go by the adage LIVE AND LEARN! (And LEARN FAST, I might add!) I suppose if there's ever a time you get "used to" the emotional ups and downs of surviving the death of a child and dealing with the medical conditions of another, we're there. Not to say that we've "arrived," but to at least say we are accepting it as well as possible these days. Definitely a one day at a time affair!