Our short time at home: The continued story

It was in car on the ride home that had Johnny seeming very uncomfortable. Still at this point we were thinking it had to do with the procedure from earlier in the evening, since we had been told repeatedly that our concerns were nothing to worry about. We made a stop at the In and Out drive through, neither of us had eaten anything for most of the day.

The ride home seemed so long, he cried most the way.

11:30pm: We made it home, the kids had waited up to see their baby brother, and were so happy when we walked in the house with him. The dog was pretty worked up, and wanted to see what this little noise maker we were holding was. Unfortunately our visions of a happy homecoming were dashed rather quickly, when Johnny wouldn't stop screaming. I tried to feed him, but, he had his mouth closed so tightly he refused. I tried changing his diaper, and checked to see if there was a problem from the circ. Everything looked fine. I swaddled him tight and held him close, that didn't seem to do the trick either. Jake and I exchanged glances of worry, we had tried everything to calm him.

We were on skype with my mother-in-law, who was in Africa at the time. We had hoped to show off our beautiful baby, all we showed her was a very upset little one that we couldn't console. It felt so sad to us. We ended up sending the kids to bed so we could keep things calm in the house, especially since we were feeling so uptight. This wasn't right, something wasn't right.

Exhausted, we finally tried to lay down. With Johnny laying between us, cradled in Jake's arm, we hoped for sleep. Off and on through the night I tried to feed him, he still was refusing to open his mouth. Not one time were we able to get anything in him. I tried formula, and nursing both, but he wasn't interested. He continued to cry. There was about an hour of quiet between 1am when we tried to get some sleep and 4:30am when I finally gave up and brought him downstairs with me. I searched the internet for reasons why a baby wouldn't eat and continually cried. I didn't find anything useful to help me. In tears I picked up the phone and called the pediatrician.

5am: Tyelnol, was his answer. There was no fever, in fact the opposite, his temp was on the low side of things, 97.2. He told us if it didn't help, to call the office when it opened and bring him in. Of course it didn't help, I couldn't get him to eat, how was I going to get him to open his mouth to take tylenol. The frustration we were feeling was overwhelming to us.

Before we left the hospital they instructed us to take Johnny into the Healthy Beginnings office the following morning. They check for jaundice, and the overall health of the baby after release. We were there before they were open, waiting for him to be seen. I was hoping they would say his jaundice level was too high, that would be something easy to handle. This wasn't the problem. For the first time though, a nurse confirmed my fear that something was wrong, that it wasn't in my head. She said he was in distress and called the pediatrician immediately, then sent us over to his office. We would later find out she used to work in the NICU at the hospital across the street, and had called ahead to let them know to be watching for us, that we would be bringing our baby in.

9:30am: The pediatrician tried to get the baby to take some formula, just like we and the nurse at healthy beginnings had done. Nothing. His mouth was clamped shut, he refused everything that was offered him. His temp was still low, and at this point he hadn't had any nourishment in over 12 hours. Once again he (the pediatrician) saw no urgency in the situation, and didn't send us to hospital like the nurse thought he would, not even for fluids. Lab work was oredered, and we were told to keep trying to feed him. He told us everything would be fine, to wait on blood results to come back.

11:00am: We immediately got to the lab for the blood work.

Then the waiting began. We went home for a change of clothes and a blanket for Johnny, everything he had was wet. We were still working to get him to eat, and by this point I was a nervous wreck. I couldn't wait any longer, we decide to take him to the ER. On our way there, we got the call that his blood work showed infection. His white cell count was very low, 2800. The CRP level was elevated to 4. They didn't have answers to why, but it was concerning. Once again we were told there was no reason to hurry, but go to the hospital, and everything would be okay.

In the parking lot of the hospital: Johnny turned blue, and appeared to be not breathing. I yelled to Jake that the baby wasn't breathing, and grabbed his car seat and starting running into the hospital.

We were to admit him to pediatrics, but first had to go through admitting, they were painfully slow. I just stood and cried holding my son, waiting and begging them to hurry. He was getting worse.

I was more scared than I had ever been before, and I could see my son was quickly getting more sick by the minute.

To be continued...