Our 2 Week Nightmare

Now that I wrote about William's birth story, I have to write about his hospital stay. I wish I could just forget everything that happened. It is still a nightmare to me.

We had so many visitors after William was born. I didn't even get to hold him because he was being passed around like an idol. At this point I had been awake for over 48 hours. I was exhausted. Actually, exhaustion is an understatement.

I remember it like it was yesterday. It was FINALLY my turn to hold William. It was about 1900 hours (around eight hours after he was born). I was holding my precious boy and Sean was taking some pictures. I noticed around that time that William was working kind of hard to breathe. I began to worry. But I stopped my worries just because all the doctor's and nurses had seen him and he was just fine. But I could not help my self, so I kept watching him. Soon I began to count his respirations. He was breathing at about 120 breaths per minute (normal respirations for infants is 30-60). He was breathing so fast that it was hard to even count. I finally had Sean call in the nurse. She looked at him and said, "I'm kind of concerned, I'm going to take him into the nursery."

At that moment, my heart sunk into my stomach. I began feeling queasy and nauseous. I felt as if I couldn't breathe. I followed him into the nursery and began one of the longest nights of my life. I sat there and watched the numbers on his oxygen monitor slowly begin to decrease. I couldn't stop crying. I held his tiny hand and cried and cried. Soon the machine began to beep. "What is wrong with him?"

All the other babies in the nursery were just fine. How come my son had to be the one with medical issues?

Soon the nurses placed some oxygen by his face. One nurse said to me, "don't worry, he'll be just fine. Go and get some sleep."

It was around 2200. I decided she was probably right. Not only had I not slept in over 50 something hours, I was in a lot of pain. I had a terrible vaginal tear, was bleeding heavily and I was slightly anemic. I went back to the room and asked Sean if he'd stay with William. I was able to fall asleep for a couple hours and then called the nurse to take me back to the nursery.

I watched Sean sit next to William. He looked exhausted. William looked even more exhausted. He was still breathing way fast and they started putting oxygen on his face. I stared at him and the tears began to flow. My son. Why did it have to be my son?

Sean gave him a beautiful blessing. But I knew something was not right. I demanded that the nurse call the doctor and get some blood tests and a chest x-ray ordered. The nurse insisted that some babies struggle a little bit at first but then are just fine. I told her that I was a nurse, and that my son did not look "just fine."

She agreed to call the doctor and he ordered the labs and x-ray. I watched as William had this look on his face like he was trying to hold on to dear life. I knew he was working hard to breathe. By time the tests were ordered it was 0300. I was dizzy and sick. I knew I had to go lay down. I woke up Sean and made him watch over William while I slept. Again, I woke up at around 0500. I hurried over to the nursery. William did not look any better.

I asked the nurse if the test results were back. She said she didn't have time to look at them. She hurriedly went to look at them and to my dismay, everything was wrong. His white blood cell count (WBC) was 54,000 (normal is 4,000-10,000). His chest x-ray showed a white-out in his lungs. The nurse immediately called the doctor. I began to panic.

The doctor finally arrived at around 0600. I remember having to go back into my room to change my pad while he did a thorough check-up on my only son. My son that I had waited for for three years. I heard a knock on the door and the doctor entered.

I sat down at the bed and Sean came over to comfort me.

"I'm concerned about your son. He is requiring oxygen and it looks as if he has pneumonia. I am also concerned that he may be in sepsis and/or have meningitis."

I couldn't control my emotions. I sobbed loudly and heavily.

"I am so sorry, but we need to take him to the NICU right now."

Sean wheeled me in the wheel chair to the nursery. I got to hold him as they rushed us down to the NICU. I felt as if the world was closing in on me. I felt as if God hated me. I began feeling mad. Mad at my family. Mad at Sean's family. It was one of them that got him sick! Mad that I didn't get to spend time with him when he was healthy. Mad. Just mad. My heart felt like it was ripping out of my chest. It was the nurse's fault! Why did it take her so long to give him a bath?! She probably didn't give him a warm bath and brought on some chills. Who? It was my fault. I should have showered before I came to the hospital. Why didn't I shower? What happened? Why couldn't it be me that was sick? Why my William? Why did God promise us a healthy baby in the blessing I received when I was pregnant? He lied!

I sobbed and sobbed. I couldn't let him go. He looked at me with his deep eyes. He just stared at me. Almost as if he was trying to comfort me.

Nurses and doctors were ready for us right when we arrived in the NICU. They  began hooking him up to monitors and started asking a bunch of questions. I couldn't talk. I didn't want to talk. I was angry. Why didn't the nurses listen to me?! I knew something was wrong. His rate of breathing increased. It was now up to 140. I couldn't look at him. He was in pain. He was suffering. It was my fault. I couldn't watch him suffer. But I couldn't leave him alone. I was going to lose him. I'd seen God take many away. Many away in my own life. Just two months before, my dear grandfather died. A month before that, it was my uncle. A year before that, it was my aunt, cousin and grandma. I went to two funerals of my infant nephews who died after birth. And immediately I thought of Sean's cousins, who recently had buried their own first born. I felt as if it was inevitable. I was going to lose him.

 I had to return back to my room to change pads. I felt filthy. I hadn't showered in nearly three days. I was dizzy. I was nauseous. I was bleeding like there was no tomorrow. Not only did my heart hurt more then I could bear, but I could hardly sit down due to the pain.

We got upstairs and I collapsed in the hospital bed. Sean laid next to me and held me as I sobbed uncontrollably.

I was able to get up and shower with Sean's help. We went back down into the NICU. They had William hooked up to several cords, tubes, and wires. They began treating him with two different antibiotics.

Honestly, I don't remember the rest of that day. It was a blur. I remember sitting in the recliner next to William's bed. I just sat there. Stoned. I watched his little struggling body. I just sat there.

I got bits and pieces of sleep here and there. They continued to do chest x-rays on William every couple hours along with blood draws. His chest x-rays continued to worsen. However, they already began to see improvement with a decline in his WBC.

I remember being able to sleep on and off. We'd go up to our room and back down to the NICU. I spent every waking minute in the NICU. I just sat and watched William suffer. We were still waiting on his blood cultures and other test results to learn what other course of treatments he would require.

I remember I told everyone on Facebook. My family decided to hold a fast for him. I just didn't know how things could get better. It felt as if they never would. My baby story "dream" was over and this was a complete nightmare. However, I was not alone. People around the globe were praying for my precious son.

It was late when I returned to my hospital room. I remember I was starving. Randomly a snack was delivered to our room. It had fruit and cheese. I was excited but then looked at the name and room number and realized that they delivered it to the wrong person. I called the nurse and she said that they didn't have anyone in the hospital listed under that name. For the first time in a long time, I smiled. The name on the snack was, Eugenia. It was my grandmother's name. My grandmother who died right before I conceived William. Have you ever heard of the name, Eugenia? It is a very very uncommon name. But there it was, sitting on this snack that randomly appeared at my door. My grandma's number one love language was food. That was how she comforted us. Coincidence? No. It was a tender mercy.

The night was slow and Sean and I would go visit William every couple hours. Finally morning arrived. Sunday, July 1st, 2012. The sun was high and I felt rested. I hurried and ate breakfast and we ran down to the NICU.

That morning, they decided he was doing well enough to transfer him to his own room away from the other critical babies. He got his own room. And I was SO grateful to have a quiet place to be with my family. That was another tender mercy. William was off oxygen!

We met William's nurse for the day. She introduced herself as Geni. I looked at her name tag and it took my breath away, Eugenia. Her name was Eugenia. Another tender mercy. At that moment, I knew my grandma was watching out for us. For the first time in two days I began to feel peace. I knew the prayers began to make a difference. 

The doctor discharged me, but spoke with the nurses to arrange a way for me to stay in the hospital room like a hotel while William was still in the NICU. Another tender mercy. I got to stay closes to my son.

Later that day we discovered that William's WBC drastically improved, however his bilirubin levels were still high. So he still had to remain under the Bili lights, but he was doing better. He was healing.

We were told William would have to be in the NICU for 7 days. I was angry that it was going to take so long. This was time I was supposed to spend with my husband at home with our baby. But I was grateful that my son was going to be ok. I knew that angels were watching over him.

The next three days were the longest days of my life. Every hour felt like a month, and every day felt like a year. I was still in terrible pain. I could hardly sit. Yet all I did was sit in that recliner next to William and watch his vital sign monitor. He was given various treatments, multiple IV's, and I worked and worked to get him to breast feed.

Thursday, July 5th. We ran down to the NICU at around 0400 and discovered oxygen was back on William. He had come so far and now he was struggling to breathe again. The nurses began the chest x-rays and the blood tests again. How could this nightmare get any worse? Again, I watched his body and cried. I felt so helpless. And Alone. I wanted to go home with my son! I wanted him better.

There was no more room in the inn. The hospital told us we had to go home. I was devastated. I had to leave my baby the very day when his health began declining again. Sean packed all of our stuff that afternoon. We stayed in the NICU until they closed the unit for shift change at 1900.

Sean wheeled me out to the front of the hospital. It was the first time I had been outside in a week. I sat there in the chair and sobbed so hard I thought my eyeballs were going to pop out. My mom just stood by me with her arm around me. I got into the car and cried the whole way home.

I wrote this on Facebook, "William has not improved. He is still on oxygen and he started having difficulty breathing again. Chest x-ray showed atlactasis in both lungs. Tonight they are keeping him on pressurized oxygen to see if they can reinflate the alveoli. I am at home. No mother should ever have to leave her sick baby in the hospital. I have never felt more scared and alone. Please continue your prayers."

We called several times that night to check on William. I still couldn't sleep. When morning came, even though I hadn't slept, we rushed to the hospital. William had improved, but his respiratory rate was still high.

Sean dropped me off in the morning at the NICU and I felt feverish and sick. I couldn't get warm and I was nauseous beyond belief. My pain was the worst it had ever been. I laid in the recliner and watched William sleep. I was terrified that I was sick and that I wouldn't be able to be with my son due to him being on antibiotics. The nurse brought me some water, warm blankets, and some crackers. I ran to the bathroom and found yellow puss coming out of my stitches and I was in excruciating pain. I sat on the toilet and cried (yes I cried a lot).

I was able to get a doctor's appointment that day and he immediately put me on antibiotics. I had a full-blown infection. The pain was unbearable, but it was also unbearable to be away from my son. Since I wasn't contagious, the NICU allowed me to stay with William. 

I held my precious boy and peace overwhelmed me. I whispered in his hear, "William, get better so I can take you to your real home." 

I changed his diaper and laid him in his cradle while I washed my hands. The nurse came in to do an assessment on him. Suddenly I heard a loud scream and cry. I ran over to William to see if he was safe. The nurse began laughing. She replayed the story to me. 

William had gripped his oxygen with both hands and tore it off his face. It hurt him because the tape had ripped off the skin on his cheeks. The nurse said that William was done with the oxygen and he wanted to go home. I thought to myself, "I have one obedient boy." 

They prepared to release William the next morning, but his respiratory rate was still too high. We went home again without William in our arms. I remember having to wake up every 3 hours to pump because my breasts  were so engorged. Half asleep, I would listen to the purr and hum of the pump. It sounded as if it was saying, "we're at home, we're at home, we're at home." I hated hearing the noise. It felt as if it was mocking me. Stop saying "we're at home." We are not HOME! WILLIAM IS NOT HOME. I'd cry and cry. Sean would   hold me and get me something to eat and would lull me back to sleep. I remember my eyes being so swollen that they ached inside my head.

It was Sunday. 9 days since William was born and we were STILL in the hospital. The nightmare never ended. The doctor was still concerned that William was breathing too fast. She wasn't ready to release him. They ordered oxygen again. My heart sank. He was never going to come home. The social worker saw me in despair and offered to find a way for us to spend another night at the hospital. They had two rooms in the NICU that allowed parents to stay overnight. The room had a bathroom with a shower and a queen bed. It was heaven. The best part was William stayed with us in our room. After 9 days, I finally got to spend the first night with my son.

It was an exhausting night, but the best night ever. William screamed most of the night, but I loved holding him. That morning William was 10 days old, and the doctor released him home on his oxygen. You couldn't wipe the smile off my face. As we were leaving the NICU the receptionist yelled, "see you later!"

I turned with a smug look on my face, "I will NOT see you later. I hope to never see this place again." 

She laughed and we parted ways. 

William was still attached to oxygen and a saturation monitor. The first night when he was home, I just laid there and watched the numbers on his monitor. I had to make sure he was safe. Each day I became more and more concerned. I loved having him home, but something still didn't feel right. He was still breathing too fast.

William saw the doctor Tuesday and Wednesday. Thursday morning I called again because William was breathing too fast again! The nurse seemed irritated. "He is just fine. Babies breathe different than adults, they breathe really fast then slow down."

"My son is breathing at 120 breaths per minute. I have counted them over and over again."

With a sigh she said, "well if your that concerned just bring him into the office and we'll check him out."

Sean and I hurried to the office. The nurse came in and tried to count his respirations. At this point he was breathing so fast that she could barely count them. The doctor came in and had us take off his clothes. She listened to his lungs and counted his respirations  I will never forget what she said, "I am sorry, but there is something wrong with your son. I believe he may have a heart defect or some sort of metabolic imbalance. You need to take your son immediately to the Emergency Room at Primary Children's Medical Center. I will call and let them know you are on your way."

Sean and I hugged and cried in the nursing office. It felt as if our worst nightmare had just begun.

They quickly took us into the ER to speak with the NP and Doctor. Again, I was ready to pass out from so much pain and I was still fighting an infection. They put us in a regular screening room. As soon as we sat down, the doctor entered and said, "follow me quickly and tell me what is happening."

He took us to one of the intensive care rooms with all the huge equipment and gadgets saying, "I need him in here just in case. When children get sick, they get sick really fast."

In between my sobs, I was able to relate William's story. They put on a bunch of monitors and equipment. They did an EKG, several x-rays, and collected several tubes of blood. They placed another IV and started administering fluids. I laid next to William on the bed praying, "please, God, why is this happening?" I prayed and prayed. I didn't understand. I wanted to understand.

They admitted William on the Infant Medical Surgical unit. I hadn't showered. I hadn't slept. My breasts were bulging. I hadn't had any food for over 12 hours. We got William situated and went downstairs to get some food. We called family and updated them with our lack of news.

There was a tiny little chair that folded out into a cot. Sean and I squished on the cot and Sean immediately fell asleep. I sat and watched William's vital sign monitor. I watched as he breathed too fast and as his oxygen saturation's would dip. That night seemed never-ending.

Too my joy, an old friend of mine was William's aide for the night. We talked for a half hour and it lightened my mood. I was able to squish with Sean again and fall asleep.

That morning, they began running more and more tests. Each minute felt like days. Eight different doctor's came in to speak with us. None of them knew what was going on. They were able to ween William completely off the oxygen. I was able to take a shower at the hospital and we continued to eat at the cafeteria. I did not step one foot out of the hospital since we arrived in the ER.

After completing a full work-up, the doctor came in to speak with Sean and I. "We don't know why your son breathes so fast, but it is not life-threatening. He does have a small PFO, but that shouldn't affect his breathing. We want you to follow-up with a Pulmonologist. We can watch him for another night, or if you feel comfortable taking him home you are welcome to do that. I trust you because I know you are a nurse."

That was an easy decision. We went home. 2 weeks worth of doctors and hospitals and we were going home. William was off the oxygen. He was still breathing extra fast, but we were going home. They sent us home in an outfit that said, "brave" on it.

I will never be able to fully describe the love that I feel for my buggy-boo. My love for him goes far beyond anything comprehensible. He is a part of me. More than me. He is the best thing that has ever happened to me.

I still don't know why William struggled so much at the beginning of his life. He is still breathing fast and we are still following-up with a Pulmonologist. They even tested him for Cystic Fibrosis (pics above). To this day, they don't have an answer for William's problems. If he still is struggling in the spring, they want to run more tests. But for now, they are considering him healthy. :D William is a miracle through and through. The IMC NICU doctors said that if we would have taken him home as a newborn, he would have died. But Heavenly Father gave me the knowledge to advocate for my son and he is alive and HOME with me today.

Well, that was a long post. The next posts will be much happier!