Coming Home

We were home. All four of us, together at the same house. It was wonderful, but at the same time petrifying. This was nothing like when Brooke came home. This was a baby that I felt might just break. Or die. As I said before, I had no experience in the medical field, and over the past three weeks I had been inundated with medical jargon. Chronic renal failure. Colostomy. Stoma. Creatinine and BUN were two terms that were going to rule my life – for as long as Derek remained alive. Creatinine measures the kidney function, and BUN measures hydration level. I had learned that very quickly.

Derek could only get a sponge bath due to the colostomy. Submerging him into water was too risky for fear of infection. And let's talk about the colostomy. A piece of intestine was brought out through an incision in his abdomen. A bag is then placed over the stoma and adhered to the skin with a sticky, putty-like substance. The stool then collected in the bag, and the bag got changed daily. I don't know how long it took me before I didn't gag when I had to change that bag. And then the skin started breaking down around the stoma due to the acid in the stool. His skin turned blood red, raw. And he would scream from the pain when I changed the bag. And then I would cry.

Meanwhile, Brooke was adjusting as well. She was two when he was born, so there was basically nothing she could understand about her baby brother. But she loved him right away, and never showed any jealousy.

Derek's kidneys were functioning, but not properly. This meant toxins were building up in his body because his kidneys couldn't flush them out. So, as part of the disease, Derek was nauseous and vomited a lot. He was on a special formula that we had to mix up, a high-calorie mixture. With all the vomiting, it was hard for him to gain weight. His creatinine level had to be monitored very closely, and we had been given an appointment to go back to the hospital clinic for a checkup three weeks after he had been discharged. Those three weeks crept by and it was time to go back to Miami.

Once at the clinic, Derek was checked in, weighed, his temperature taken and we were ushered into an exam room. His team of Nephrologists (kidney doctors) came in and we went through the initial small talk and they examined him. Apparently he hadn't gained much weight. Then they wanted to draw some blood. This proved to be a difficult task, as his veins were so tiny and he had to be stuck numerous times. All the while they tried, he was screaming. And I was crying too. This was my newborn son, having to go through this ordeal. How unfair this was, how terrible for this little baby to have been born into this pain. My heart was just breaking.

After the blood had been drawn and Derek was back in my arms, it was then the doctor landed the most crushing news of all. There was no cure for Derek's disease, we were told. The most we could ever hope for would be a kidney transplant, but the chances of him making it to the point where he could receive a new kidney were basically slim-to-none. He would have to weigh at least 22 pounds to be able to receive a new kidney. And Jackson Memorial had never done a kidney transplant on a patient that young at that point. Then the doctor said to me, “Babies born with this condition don't make it very long. Just enjoy the time you have with him while he's here.” And he said it so nonchalantly. I couldn't believe what I had just heard, and when the words registered in my brain, all I wanted to do was run. There was not one more thing I was going to listen to that day. I turned around, said we were leaving, and out the door I went, Derek in my arms and tears streaming down my face. I don't know how I did it, as every part of my being was numb. They said I was going to lose my son.

The Waiting Game

Have you ever had to wait for something? Something you REALLY wanted? Time stands still when we have to wait for anything. We are a society of immediacy; we want it and we want it NOW! Multiply that feeling times a hundred, maybe even more, and you might get a glimpse of how I felt waiting for my son to come home. Two weeks had gone by, and we still weren't any closer to finding out a diagnosis for Derek. Every day we would go in there, hoping this would be the day we would get our answers. And every day, the same thing. “We don't know what's wrong yet.” Which of course, meant Derek was still not able to come home.

At the time of Derek's birth, we lived in West Palm Beach, which is a little over an hour away from Miami. My parents lived in Hollywood, which was only half an hour away. So we stayed with my parents during Derek's stay at Jackson. This was helpful too because we could leave Brooke with them while we went to visit Derek. Brooke was only two years old when Derek was born, and we had no idea at the time how this would impact her life. We couldn't bring her to the hospital, as we didn't want to frighten her with all the doctors, needles and machines attached to her brother.

I had wanted to breast feed Derek, and I was encouraged to do so for Derek's sake. So, I pumped numerous times a day, froze the milk, and then daily would transport it with us when we would go see him. But within a week of his birth, it was obvious Derek's appetite was decreasing and the nurses had a hard time getting him to eat. So the doctors changed him from breast milk to a special formula, which was loaded up with calories. He was born at 8 lbs 10 oz, but was losing weight rapidly. Even as I'm writing this now, I can still feel the pain in my breasts of making my milk dry up prematurely; it really was just beginning to come in. This was yet another stab to my heart, that I didn't have a baby to hold in my arms & nurse. My son was still living in that cold hospital, hooked up to so many machines and being poked and prodded every day of his brand new life.

The doctors were telling us they were having a hard time locating Derek's kidneys. They knew they were there, as he was urinating. But locating them was another story. Finally, two weeks into Derek's stay, the kidneys were located and the diagnosis was given: Chronic renal failure due to hypoplastic kidneys, also having an imperforate anus. WHAT?? Interpretation: kidney failure, due to the kidney's never fully forming, along with the intestines that didn't fully form as well. His kidneys were like little tiny balls. This is what I had been waiting for? To be told my son's kidneys were barely functioning? All this did was create a hundred new questions in my mind. No closure, just mind-boggling questions.

Finally, after three weeks in the hospital, the doctors gave permission for Derek to go home. Once the diagnosis was given, a treatment plan was established and we were told we could take him home. With all the waiting I had done to get to this point, one would think I would be ecstatic. I was anything but. I was absolutely, 100% terrified to bring my son home. What if I couldn't take care of him? What if something happened to him while he was at home? How do I know what to do? I was 24 years old, the mother of a normal two-year-old daughter, who had zero medical experience with anything other than a thermometer. How was I going to take care of this fragile little boy? I could still barely look at the colostomy bag. Now I was going to have to change it. And Derek wasn't able to have a real bath. Only a sponge bath. He couldn't be submerged into the water due to the risk of infection of his stoma, the end of the intestines that was pulled out through an incision in the abdomen and was now covered with a hideous, smelly bag. This was the baby I was finally bringing home, three weeks after his birth. We left the hospital with instructions to return to the clinic in three weeks for a follow-up visit. Welcome home, Derek.

Meeting My Son

Jackson Memorial Hospital in Miami, Florida is a city of its own. A massive, daunting, overwhelming city. After parking in the garage, we somehow found our way to the Pediatric Intensive Care Unit where we had to wait outside the doors to be given permission to enter. 

I stood there looking at the closed doors, knowing my son was behind them. I hadn't held him since they had placed him on my chest right after birth. I could hardly breathe, not knowing what I would find on the other side.

Finally, a nurse came out and introduced herself. She then proceeded to update us on Derek's condition and explained to us exactly what we would see when we went inside. The situation here was a completely different story than in Hollywood. This nurse was compassionate; she explained things in terms we could understand and took into consideration that we were parents, not medical students or physicians. And she wanted the shock factor to be kept to a minimum. She then told us to let her know when we were ready, and after scrubbing at the sink outside the door and putting hospital gowns on, we all proceeded through the doors. And into a scene from hell. At least to me it was.

Inside the huge room were incubators. And machines. And lots of beeping noises from all the monitoring equipment. And babies. And nurses and doctors. And babies.

It didn't matter how much the nurse tried to abate my shock. It still hit me. Hard. She had taken us over to where Derek was, and as I looked down at him, all I could think was “that can't be my son!” I broke out in sobs and felt my heart was actually breaking into pieces. My little baby was laying there with so many tubes and monitors on him, alone, and not in his mother's arms where he should be. He should be at home, being held, loved and comforted by his parents when he cried. Instead he was in a cold hospital unit, being poked and prodded and even being surgically cut open. My first look at the colostomy made me just want to scream.

I remember the nurse coming over and putting her arms around me as she hugged me. Then she said, “Do you want to hold him?” Oh my gosh! I did, but I was petrified. She encouraged me that it would be ok, that he wouldn't break, and that he needed to feel my arms around him. She also said I should try to feed him, as I had planned on breastfeeding. She pulled over a rocking chair and picked him up and placed him into my arms. Finally, I was holding my son. Now that I had him in my arms, I didn't think I could let him go again. Little did I know, this is the only way I would be able to hold him for three long weeks. It would take this long for the doctors to figure out, to the best of their abilities, just exactly what was going on in his little body.

Birth Day

A normal, healthy baby. That's what most women will say when asked the question while pregnant, "Do you want a boy or girl?" Normal & healthy. That's what I wanted.

Back in the 80's, ultrasounds were given sparingly to pregnant women, unless the doctor thought it was a medical necessity due to some possible problem. There were no complications or issues with my first pregnancy and birth of my daughter, so there was no reason for me to have one. I was seen through a clinic, as we had no health insurance at the time I got pregnant. And most times, no one knew the sex of the child until the birth. Surprise! I was pleasantly surprised upon the birth of my son, as now I would have a daughter & a son!

Derek was born in Hollywood at 8 lbs 10 oz, two weeks past his due date . It seems he knew something the rest of us didn't....he wasn't quite ready to come out yet! A  midwife helped with his birth, which was a wonderful experience, as she stayed with me throughout the entire labor process. I had a natural birth, with no pain medications and no complications.  Derek was placed in my arms right after birth and encouraged to breastfeed immediately, but he seemed to have no interest. Then shortly afterwards he was whisked away to be examined and cleaned up. Little did I know that would be the only time I would hold him without some sort of IV line or monitor on his little body for a very long time.

Things were different back then, babies went to the nursery and were brought to the mom's room for periods of time, I guess so the moms could rest. So after the delivery, I was put into a semi-private room and could expect my baby to come back to me in the morning.

Upon waking in the morning, I could hear babies crying as they were being wheeled down the hallways in their little beds. My roommate's baby was brought in, and I patiently waited for my son. And waited. Finally, I called for a nurse and asked her when Derek would be brought in. She said to me, "Oh, your son isn't coming. Didn't anyone tell you? He's in Pedi ICU and can't be brought in to you." I thought I must still be asleep & having a very bad dream. Derek's dad, Joe, hadn't yet come back to the hospital after going home during the night; so there I was, sitting in my bed, with no baby to cuddle and with a gazillion questions running rampant through my mind. When he got to the hospital, he actually found out before me that Derek was in Pedi ICU and had been able to go see him. Then he came to my room, where the doctor finally came in and the only explanation we got was a lot of medical jargon, which to me sounded like a foreign language and the only thing I could pick out was "he needs surgery as soon as possible and will be transported to Jackson Memorial Hospital in Miami".

Apparently upon examination after his birth, the nurse was not able to insert a thermometer into his anus, as there was no opening there. It was sealed shut. The midwife did mention this to me during the night, but she made it sound like no big deal; she said that sometimes an incision just has to be made there to open it up. So I never gave it another thought. But until that happened, Derek had no way to excrete his waste and he would become toxic in a very short period of time. Hence the frantic rush to get him to a hospital who could manage his condition.

Shock. Pure, total shock set in. Surgery? On my newborn son? I hadn't even gotten to see him again since he was born! They wouldn't even let me out of my bed to go to the PICU! Everything was rushed and frantic after that point, and Joe did finally get someone to agree to wheel Derek into my room before he was put on the ambulance headed to Miami. I was not prepared for what I was about to see.

In the room comes the ambulance attendants, pushing the incubator Derek was inside of. There was my baby, naked, with tubes and monitors and IV lines on his body and he was crying. I wasn't allowed to even touch him, never mind comfort him, before they had to whisk him away. Joe was going to follow the ambulance to Jackson and be there while he had surgery. Out the door they all went, and I was left in a stupor, sitting alone in my bed. And all around me on the floor were crying babies and happy moms.

They never attempted to move me from the Obstetrics floor. The nurse came in shortly after Derek had left, drew the curtain around my bed, and gave me some pills to take. That's right, drug me up. Drug me so I don't realize I don't have a baby in my arms. I'm sorry, but there was nothing in this world that would take away the pain I was experiencing. I thought my heart was being torn right out of my body. Before the pills sent me into a sleep oblivion, all I could do was sob. Gut wrenching sobs. I spent the rest of that day alone in my bed, with the curtains drawn around me like I was an outcast. My mom couldn't come to the hospital, as she was caring for Brooke, our daughter. My dad came later on that day and sat by my bed and stayed until Joe could get back. And every four hours, more drugs would come and a drug induced sleep would follow.

Derek made it through his first surgery. He had to have a colostomy, as his intestines did not fully develop. Colostomy?  I didn't know what that was. But I was about to learn quickly. It's when a piece of the intestines is brought out through an incision in the abdomen, and covered with a bag which is held on to the abdomen with a special putty-like sticky substance. And all the waste goes into the bag, which is then changed with a new bag when that one gets full. My baby has a colostomy bag???? I couldn't even process this information! And, we were also informed that there were usually kidney issues associated with under-developed intestines as well. So further testing would be done. 

I was discharged from the hospital the following day, and the feeling of leaving the hospital with no baby in my arms is something that I will never forget. But I wasn't waiting any longer to see my son. We were headed to Jackson Memorial Hospital for an introduction to a baby I was absolutely petrified to meet.  I didn't know what to expect when I got there. I had questions; but these questions didn't even begin to scratch the surface of what was going to be thrown at us next. And I certainly didn't know it would be three weeks before I could even think about bringing my baby home.

The birth of a baby is supposed to be one of the most joyous experiences of a woman's life. The birth of my son, my second child, was anything but. He was born with underdeveloped kidneys and intestines. His first surgery was within the first 24 hours of his life. Doctors told me to "appreciate whatever time I had with him"; he was not expected to live.

The year was 1983, and ultrasounds were not the "norm" back then. I never even had one while I was pregnant with him. So when Derek was born "less than perfect", to say it was shocking is an understatement. I was treated like an outcast in the hospital after his birth, left alone in my room with no baby in my arms and drugged up in hopes I wouldn't realize it.

This story is actually one of hope; one of courage & determination. It is a story I hope will touch your heart, that may bring comfort to someone else that may be going through a tough time. I hope it will inspire you in many ways.

I say Derek was born "less than perfect", but he is actually one of God's masterpieces! The definition of masterpiece is "a consummate example of skill or excellence of any kind." Psalm 139:15 states: "My frame was not hidden from you when I was made in secret & skillfully wrought in the lowest parts of the earth." Derek was not a mistake God made - he was born just as God had planned right from the start!

This journey I am about to venture back into will be heart-wrenching for me. These experiences were so difficult the first time! But as I tell Derek's story, I'm hoping to re-experience the joys & blessings I've found along the way one more time as well. And I truly hope to inspire someone to not give up hope, to persevere in the face of darkness when all hope seems lost. I hope you'll join me for an incredible story!

                                                                       November, 1983