When You Have a Sick Child

When You Have a Sick Child

My first son was diagnosed with jaundice. His body couldn’t remove the bilirubin from his system so it built up, causing his skin to look orange. To treat the disease, babies are put under bright lights. This helps to break up the bilirubin, allowing it to be passed more easily.

Cody was placed under three sets of lights due to the severity of his problem. He was only allowed out to eat. We couldn’t even hold him for the first few days of his life. After five days, we were able to go home, though I made sure to put him in the sunlight daily, to keep the problem from returning.

When my second son was born a year later, his problems escalated more than Cody’s did. He wasn’t diagnosed with jaundice until the day we were going home. He was then placed under one or two lights at a time and we were able to hold him longer than his brother.

Every time they thought the jaundice was under control, they would take him away from the lights and he quickly turned orange. His bilirubin levels always went back up, even with just a few hours off of the lights.

Here I was, a mom to a sick baby and a one-year-old at home. I just wanted to go home so I could take care of both of my sons. However, with his levels rising every time we took him off of the lights, the hope of leaving the hospital looked very dim. Finally, after five days, we were allowed to go home, though we had to have a checkup the next day at his regular doctor.

His regular doctor took one look at him and told me to go back to the hospital. I was devastated. We were home only one evening and she wanted us to go back! I was so happy to be home with both of my sons, but I knew that she was right, since my son was once again bright orange in color.

Instead of sending us straight back to the hospital, she decided to contact the hospital to see what they thought. Together, the doctors all decided that we could keep him at home but he needed a special blanket with fluorescent lights. He wore this for a whole week.

His regular doctor was amazing! She wanted to monitor him closely, with regular examinations and blood work. To help get the bilirubin out of his system, I was also told to stop nursing him and switch to formula. They also wanted him fed every two hours, even all night long! It was tough, but I would have done anything to be able to stay home!

During one of the blood checks, they decided to run a Complete Blood Count (CBC). This brought the devastating news that he was not producing enough red blood cells, so this became something else that we had to monitor. Every two to three days, we ran blood work to monitor his levels. They were always low! However, when he was five weeks old, his levels dropped to a dangerous point.

It was at that point that he needed a blood transfusion. It was very scary. My five-week-old son was hooked to an IV with blood dripping into his arm. It broke my heart. He looked so pathetic in his metal crib.

When the doctors did the transfusion, they explained that it is hard with babies. They only give small amounts over four hours. Then, they give the baby twelve hours to rest, before repeating another transfusion, if needed.

My son did very well with his transfusion. The nurses did not leave his side for the first hour or two. They came in to check on him every ten to fifteen minutes after that to watch for any reactions. He had none. He handled it like he was receiving fluids instead of blood. I continued to feed him and play with him. Then we tried to get some sleep while waiting for the results.

We waited anxiously for the results the next morning. His level came back high, even better than the doctors were hoping. They decided that he didn’t need another transfusion and we were sent home.

We waited almost a week before checking his level again. It was low, back to where it was before it dropped dangerously low. We went back to running levels every two to three days, but it started to drop even lower. Instead of doing another transfusion, we were referred to a Hematologist at Hershey Medical Center.

Calling to make the appointment, I almost dropped the phone when the Oncology Department answered. I knew Evan was sick, but I didn’t realize that he was THAT sick!

They didn’t schedule the appointment right away. Instead, I had to wait until they saw his records so they knew how urgently he needed to be seen. They called me back and wanted to see him in a few days. This worried me even more.

The doctor was very nice. After a few minutes with my baby, he told me that it could take a year for their levels to balance out and become normal. As long as my son continued to grow and develop, he was not worried. What a relief!

I could not wait to go home and cry because I was so happy!

The doctor still wanted to keep an eye on him though. He wanted to do blood work when he was six months old and again when he turned one. We were done going to the hospital to draw blood several times a week.

I could finally relax and start to enjoy my little boy. He was nine weeks old and, finally, he was almost healthy.

At seven months old, the doctor and I were not looking forward to checking his blood work again. We were so pleased that he was developing well, no matter what the results would show. Evan was actually developing ahead of schedule because he was always trying to follow his brother. We knew he was doing well and didn’t want the results to tell us differently.

The results showed that he was still anemic. Evan’s regular doctor said that she wanted to know what the specialist thought, before worrying about the results.

I had to wait several days for the specialist’s opinion. He called me personally which worried me. He said that he was concerned but there is nothing that he would do at this point. Instead, he wanted to repeat the blood work when he turned one. At that time, if the results were still abnormal, we would have to decide what to do next.

We were back to the waiting game. I feel like his whole life has been a waiting game - he didn’t have much of a chance to be a baby! We spent too much time going back and forth to the doctors and hospital. Though he looked so healthy, his blood work told us the truth.

As a mom, it was so hard to wait. I just wanted him to be healthy. I almost felt that I kept him at a distance because he was sick, almost like I was scared to lose him. I have always loved him dearly, but the beginning of his life was very scary and stressful.

I look at him and see a happy child who is growing well. I watch him trying to follow (and imitate) his brother and I worry about his future.

What is going to happen when he is one? Will his level become normal? Will he need another transfusion? Will Evan be ok?

I guess we are back to waiting … and waiting … and waiting some more!

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