Saturday, December 5, 2009

Our Story, Our Loss, Benjamin Bryan

This story was written by my husband.  
We wanted to have it all written down so we could go back and remember all the details of our Benjamin.

Thanksgiving Day, November 27th, 2008, Angela and I discovered God had indeed given us one more thing to be thankful for, we were pregnant!  Like most men I was excited, amazed, anxious and a little scared after learning our future had just changed forever. Over the next couple weeks Angela and I waited with great anticipation as our child began to grow! Since the medical world likes to assign numbers to every situation, they believe that a woman 35 years or older deserves special attention! For us this translated into frequent ultrasounds of our baby, the first of which was on Dec. 11.  Angela had a little side pain and Dr. Carter wanted to rule out an ectopic pregnancy. To our amazement not only was baby in the right place, but we could already see the fluttering tissue of the beating heart! In just 6 weeks and 3 days the miracle of life had made giant strides forward, and we had pictures to prove it!

Christmas day, we could hardly wait to reveal our little gift to the rest of the family. Brenda, Bryan  and Emily had made the trip to Kansas City for the holiday so the whole family was together. After the excitement of watching the kids tear open there gifts, we presented our parents the proof of life photo and their reaction was priceless, many tears of joy were shed that day!

The next couple months went quickly and Angela felt remarkably well. Our 3rd ultrasound on March the 5th, revealed that our baby was unquestionably male! Again, we took great delight in showing off the pictures to our parents and family. By the middle of April, at 20 weeks, our baby’s heart beat was easily heard by Dr. Carter and Angela could begin to feel real movement, what a thrill!! By week 22 even I could begin to feel baby’s movement! All this time, Angela has worked very hard to complete her master’s degree in nursing education, which was to be completed at the end of April. Once she finished her thesis paper we took a much needed vacation to Marathon Key with Bryan and Emily (May 2-7th).   Finally, Angela felt she could focus exclusively on becoming a new mother and just enjoy the last couple months of an already healthy pregnancy. As mother’s day approached, we planned to have a 3-D ultrasound with the Grandmothers on May14th. We just couldn’t resist the chance to show off our growing baby boy.  This new ultrasound is done outside the Dr’s office and is not diagnostic, just a chance to see a more real likeness of the baby.  We all enjoyed seeing our baby’s facial features, fingers and toes.

 We piled in the car to drive home, when Angela got a phone call from Dr. Carter’s office. That’s odd! Dr. Carter didn’t know we were doing an ultrasound, why would she want to see us right-away?? As it had turned out the 3-D stenographer had concerns about something she saw, however she is not at liberty to mention concerns directly to the patient, so she called Dr. Carter!

Silence filled the car on the way to Dr. Carter. Was the stenographer overreacting to something insignificant? Everything looked ok to all of us, what could possibly be happening, there must be a mistake! We arrived at Dr. Carter’s office anxious and ready for a simple answer that would clear the air. We proceeded to the ultrasound and the stenographer tried to reassure us as she began to examine the baby. To our horror, she pointed out that any fluid appears very dark on the ultrasound. That was terrifying because the chest cavity of our baby was filled with a large dark area surrounding his heart! Oh my God…. we thought what does this mean? Our fears were magnified when another OB Dr. filling in for our Dr. Carter told us he had never seen an ultrasound like ours before. What?? We thought, was this really happening?? They immediately scheduled us for a more sophisticated ultrasound in the hospital the next day! We explained what we were told to our parents, who just happened to be there on the day everything went wrong.

The next day (May 15th 2009) we saw Dr. Gibbs at St. Luke’s Hospital. He examined our baby boy, still nameless, and asked that we step into a counseling room. He revealed a diagnosis called fetal hydrops (Hydrops Fetalis). I had read some the night before about fluid accumulation in baby’s chest, and the prognosis was usually very bad. He also said that Angela was developing polyhydramnios, a condition of too much amniotic fluid. Did one cause the other? What causes either condition? Did we do something wrong? Eat something bad? Can this be fixed? Is our baby going to be ok? The questions just kept coming and Dr. did his best to explain what is known about the two conditions. He explained the major causes of the condition are fetal heart failure, viral infection, fetal anemia and a large array of rare genetic problems. We were stunned, yet still in denial. Surely, this is not as bad as it sounds. Our pregnancy had been so healthy until yesterday. How can our boy be so sick all of a sudden? What did we do to cause this to happen? He went on to say he needed some blood from Angela to test for infection. He scheduled another ultrasound and echocardiogram with the Chief Cardiologist from Children’s Mercy Hospital, who helps with St. Luke’s patient once each week.

The waiting game begins and the questions build like an avalanche about to crush us. The days start going slow in anticipation of getting some real answers from the cardiologist and in the mean time Angela is feeling more and more pain from the excess fluid accumulating in her uterus. I had to work the weekend and that distracted me from the reality that was bearing down on us. Increasingly, Angela couldn’t sleep and on Sunday she had some clear discharge, she thought this must just be stress incontinence, its way too early for anything else. Right? We informed our small group at church that there is a real concern about our baby. Everyone prayed for us that night. Monday May18th, we had a regular OB office scheduled and we saw Dr. Moore since Dr. Carter just had a baby of her own. Angela told Dr. Moore about the discharge but she dismissed it, saying to tell her if it continues, it’s not uncommon for some discharge. Finally, Wednesday May 20th came and after I left work early I anxiously headed to the hospital for some answers. Angela was already at the hospital since I had to work, Mom had brought her down. Before the cardiologist appointment Angela had to complete a 3 hour glucose tolerance test to diagnose gestational diabetes, which she failed, adding gestational diabetes to our growing list of accumulating problems. We proceeded to the cardiologist appointment desperately needing some good news. After a few minutes of careful observation and discussion the Dr’s agreed that our baby’s heart was not the cause of the hydrops. We were so relieved to hear his heart was strong! The Dr. also had results from earlier blood work which showed no active infection or fetal anemia! It was nice to hear something positive after a week of bad news! However, as we will soon learn some good news, seems to have no influence on future events. Now the perinatal doctors are concerned about the fluid discharge Angela is reporting. So they ask us to go to a private exam room for a more definitive test on the discharge, turns out her water actually broke and has been leaking since Sunday night! What? That adds yet another problem, a condition known as Premature Rupture of Membranes (PROM), which means labor could begin anytime and she is admitted to the hospital about 8pm, that night and placed on a fetal monitor. She got an IV placed and received antibiotics and steroids for our baby’s lungs to mature, in case labor progressed. We decided formally together that our baby boy needed a name because he may be here sooner than expected. We had talked about a few possibilities but we both kept coming back to Benjamin Bryan. (Benjamin meaning son on my right hand, and Bryan because of Angela’s closeness to her twin brother) This was the first of many long days in the hospital we couldn’t believe we had ended up hear.

Fortunately, labor did not progress and we moved to another room for what would hopefully be a long stay. We were only at week 29 ½ and just prayed for 34 weeks for baby’s lungs to develop more fully. Many of the next 5 days have melted together in our minds now. We had several visitors, Mom, Joyce, Greg, Judd, Victor & Faith. I happened to have all five days off over Memorial Day weekend and spent almost all my time in the room and my brief nights at home alone wondering what challenges lye ahead, feeling helpless hoping and praying for the Benjamin to live and live well.

During these 5 days Angela’s drainage seemed to stop and her amniotic fluid began to build up again. The Dr. Gibbs had scheduled an ultrasound for Wednesday to measure her fluid and check on Benjamin. Also, in an effort to determine for certain if her membranes were still ruptured he performed an amnio-dye test, by injecting blue dye into the amniotic fluid and checking for blue stains we will know if amniotic fluid is leaking. Also, he removed some fluid for testing of genetic markers and infection, all of which have shown nothing abnormal. Briefly there was hope that Angela would get to go home, however, the next day, there were signs of blue stains which proofed her membranes were still leaking and that forced the Dr. to keep her here until labor begins.

Unfortunately, labor began sooner than later. On May 30th at 3:20, after 10 days in the hospital Angela had a large gush of amniotic fluid. Angela was moved back to labor and delivery and placed on continuous fetal monitor. Things settled down in the afternoon, so I left the room and ate lunch then walked to the plaza. I found a perfect necklace from Brighton to give to Angela after labor. At about 10pm Dr. Lu decided the time was right to start pushing! Despite being nervous about the premature labor, we soon found ourselves excited at the prospect of bringing Benjamin into the world. Benjamin handled the stress of labor very well, his heart rate increased each time Angela pushed so the labor continued all through the night. Angela worked very hard to deliver Benjamin normally, but he just didn’t want to leave the safety of the womb. After several hours the contractions started to fade away, and the decision was made to start Oxytocin. After an hour break the medication started to induce contractions once again. Jonnie and I were the only ones in the room during most of the 8 hour labor. Even though we had the support of the 9 people waiting in the delivery room for at least 12 hours! Finally, at about 5am Dr. Lu decided that a C-Section was needed to deliver the baby. This was difficult to accept since there were numerous times it seemed Benjamin was just about clear. Within thirty minutes Angela was prepped for surgery and wheeled to the OR for the C-Section. At 5:53 am on May 31st, Benjamin Bryan was separated from his mother’s life giving support. All most immediately, the Neonatologist came into the OR and informed us that Benjamin was undergoing heroic efforts to save his life, chest compressions and drugs were all the Dr's could do to keep him alive. As the Dr's closed Angela’s incision, all the worst thoughts flooded our hearts and minds. As we left the OR, we were able to see Benjamin and the full extent of his hydrops was clearly seen. Our poor baby boy that we have anticipated for so long, was lying limp and motionless in his little bed. 
(See the Cross with in the lighting. God never left our side)

The room was full of Dr's, nurses, respiratory therapists and technicians all focused on keeping Benjamin alive. As I looked around the room, as everyone assessed Benjamin’s conditions the only words I could muster was “thank-you”. Angela reached out to him limp little hand and was devastated because he could not respond to her touch. Likewise, I felt a deep sense of despair as we left the room and went to the recovery room. That was the lowest point either of us reached. The critical condition of our son was staring us right in the face at that point.

After Angela went to recovery, we had a moment for some of the 12 family members to visit Angela. It was a very emotional time for all. It seemed the worst scenario had just been played out and we were helpless to change it. It’s not fair we thought. What did we do to deserve this? Of course there was nothing we did to make this happen, and life is often not fair. So we held each other and worked through the next hour. There was no word from anyone about Benjamin, so we assumed he was still hanging in there. I went to eat breakfast with Mom, Joyce and Greg, and quickly returned to Angela’s bedside. At about 8:15 we were given the chance to see Benjamin again, this time in the NICU. The nurses wheeled Angela, bed and all, down the hall and into Benjamin’s room. We were taken back at just how much his appearance had changed! Benjamin was pink! He looked almost like a normal, healthy baby boy! There was still a monumental amount of work to do for Benjamin, but he looked so good after just the first 2 hours of treatment! Our spirits jumped up immediately!

The room was full of Dr's, nurses, respiratory therapists and technicians all focused on keeping Benjamin alive. As I looked around the room, as everyone assessed Benjamin’s conditions the only words I could muster was “thank-you”. Angela reached out to him limp little hand and was devastated because he could not respond to her touch. Likewise, I felt a deep sense of despair as we left the room and went to the recovery room. That was the lowest point either of us reached. The critical condition of our son was staring us right in the face at that point.

This time when Angela and I reached for Benjamin, his little arms would move away, however, once he got a hold of a finger he had a marvelous grip! Even his finger nails would turn white from the pressure! We could not believe the change in Benjamin, we had hope again!

Angela was taken to a private room to continue to recover from the surgery, while I took visitors back to see Benjamin for the first time! I started with the Grandmothers, neither could wait any longer to see the miracle of life that been given to us! They were amazed at the work being done to help Benjamin and even more amazed at the sight of his perfect little hands and toes.  Our time together was brief as others were also anxious to see Benjamin. Next to visit, Mike and Lorri, then Bryan  and Emily and finally Jim and Brenda for a second time. Michelle was there but unable to visit due to a cold, Dad was recovering from knee surgery and couldn’t make it down. There presence was felt anyway, whether there in person or not. Everyone was amazed and emotional to see our little boy look so good, yet be in such a struggle to survive. Benjamin’s nurse, Christy, was very well trained and tackled the situation with all her skills. She took great pride in educating us all about the steps being taken to support Benjamin’s precious life.  We had complete confidence in her ability to carry out Dr. John Anderson’s every order. Dr. Anderson also became a man very special to our hearts.  Each time we visited he was quick to show empathy, kindness and knowledge. He always knew the right thing to say, and when to say it. On one visit, he was concerned for Angela to care for herself and to get some rest. He asked, “What do you think Benjamin dreams of?” We said, “I don’t know.”  He said, “What do you think Benjamin knows.” Again we said, “I don’t know.” Dr. Anderson said, “All Benjamin knows is his Mom and Dad, so even when we’re not right there, you are with him.” You are all he knows and he dreams about you! So for Benjamin, we are always right there with him! Time after time it seemed the good Dr. had similar words of wisdom that made our experience bearable.

The afternoon seemed to speed by. After everyone visited Benjamin, we decided to get some lunch. Everyone was starved and could see that Benjamin was in good hands with Dr. Anderson, so we left the hospital briefly for lunch on the plaza. After lunch Mom , Michelle, Bryan, Emily and Brenda left for home. I went back to the hospital and spent time with Angela. Angela was feeling pretty well after such a major surgery and was anxious to see Benjamin again. She managed to get into the wheel chair and I wheeled her off down the hall to the NICU. We squeezed in as close as possible to Benjamin, taking care not to bump any of the vital equipment supporting our baby boy. Again we were so encouraged by Benjamin’s pink color, his reflexes, fingers and toes. His vital signs were perfect, 96% plus oxygen saturation, 130 bpm heart rate, consistent blood pressure. The nurses were removing massive amounts of fluid and replacing it with Albumin. Within the first 12 hours there had been about 500ml of fluid removed from Benjamin, Dr. Anderson had already begun to wean the ventilator and oxygen delivery! Benjamin was even starting to take his own breaths over the ventilator. Everything indicated that Benjamin had taken the first big steps in making a full recovery!! Angela and I enjoyed talking to Benjamin. We told him he was doing an excellent job, that we were proud of him and that we loved him so much!!! We relished holding each of his little hands and feet. His grip still amazes us to this day. As the evening continued, our lack of sleep began to catch up to us. We had been awake for about 36 hours straight and needed some rest for ourselves. I wheeled Angela back to her room got her comfortable for the night. We were confident Benjamin was going to be alright, so I headed home to get some rest in my own bed. Once I got home, all the emotion pinned up inside came out. I cried myself to sleep that night.

At 3:30am on June 1st the phone rang. I had fallen asleep in my contacts and had a hard time finding the phone. It was Angela and a nurse had just visited her room and said Benjamin was in need of a procedure because he had developed a pneumothorax (air in the chest). Angela didn’t sound alarmed but after we hung up the phone I realized Benjamin must be deteriorating or they would not have asked us to come to his room. I got Benjamin’s room at about 4am to find Angela at his bed side, still in a wheel chair. I could see on the monitor that his oxygen saturation had fallen into the mid 70’s. He needs to be at least in the mid-80’s said Dr. Anderson, still there working with Benjamin since the previous day. Dr. Anderson explained about the pnuemothorax that developed, and that he had tried to place a chest tube to remove the accumulated air. He told us that the needle used to start the chest tube caused a lot of bleeding that they could barely stop. Once stopped however, another X-ray showed the pnemothorax had disappeared! Wow, that’s great we thought! He went on to show us the fluid that had persisted or re-accumulated around his lungs. This fluid is life threatening, it prevents the proper exchange of oxygen and carbon dioxide. Benjamin’s low oxygen saturation was a testament to the significance of that fluid. We continued to watch in disbelief as that oxygen saturation continued to fall over the next couple hours. Dr. Anderson even increased the size of the tube used to deliver oxygen to Benjamin’s failing lungs. No change. Soon we saw O2 saturations in the 50’s then 40’s. As the oxygen fails away, the heart doesn’t get the energy if needs to function well and his once strong heart, began to slow, setting off another alarm. As his heart rate slowed, his blood pressure dropped, further limiting the oxygen delivery to his heart and lungs. This vicious cycle continued for another hour or so. We continued watch Benjamin’s O2 sat. fall through the 30’s, the 20’s and even below 10. I heard one of the nurses say out loud that “we have color change”. I stubbornly thought maybe he was turning pink again, Angela had to remind me that the color change was bad. Our hearts continued to drop right along with his. It just seemed surreal, as if we weren’t really watching this happen to our son. I kept thinking he would turn around at any moment and shock everyone again with an amazing recovery. We simply could not comprehend how it had all come down to this moment. Finally, Dr Anderson, or John approached us as we sat and watched the events unfolding before us. John said, with tears in his eyes, “I’m sorry, there’s just nothing else I can do for Benjamin.” He asked if we would like to hold Benjamin, and we jumped at the chance. Dr. Anderson gave Benjamin one last dose of medication to keep him comfortable and relaxed. They removed the life support systems and handed him to us in a hand made afghan blanket and hat. It was such a good feeling to finally hold our precious baby boy. We held him close, kissed his forehead and cheeks. Angela and I marveled at his little hands and toes one last time as we took turns holding him. Emotion overwhelmed us from the time Benjamin was handed to us to the time Benjamin died. We prayed harder and longer than we had ever thought possible. We begged God to take Benjamin into his arms and hold him tightly! I believe at that very moment Benjamin’s strong heart beat its last beat. We continued to hold Benjamin until Dr. Anderson returned to the empty room and checked for any sign of life in Benjamin’s small helpless body. At about 8am, the good Dr. listened to Benjamin’s chest and could find no heart beat. Benjamin Bryan Wadleigh had passed. We have never, and hope to never again, cry as hard as we did that Monday morning. I don’t recall walking back to Angela’s room, but my next memory was eating a little breakfast and trying to figure out what to do next. What do you do after holding your newborn son in your arms while he dies?

Soon Lori was by the room on her way to work. She knew there was bad news because the nurses were not allowing visitors without asking us first. We told Lorri Benjamin had passed and we all hugged and cried together. As we got our senses back, we decided I should tell the rest of the family in person, so Lorri stayed with Angela while I went home terrible news. As I drove down Northern, I could see Dad outside watering the grass next to the new driveway. I pulled in a got out, as I approached him he asked how I was doing? I said I’ve had better Mondays, then told him that we lost Benjamin this morning. “Just like that” he said, “Just like that” I said, as we hugged each other and cried in disbelief. Soon Mom saw us and joined us on the driveway where all three of us hugged and cried for Benjamin. We made our way inside, soon the whole family knew of our loss.
Benjamin never left God's side he just briefly reached down to hold our hands.

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