At hospital: The story continues

When we arrived to the pediatric wing, they showed us to a room. The nurses were all in the hallway. We both had tears streaming down our faces, and pits in our stomach. I asked Jake to hurry and get a nurse, Johnny needed someone to help him, and soon. When the nurse came to the room and saw the looks on both our faces she knew we were serious, and then one look at Johnny had her moving faster.

He was having the breathing problem, grunting for every breath, his color didn't look right, and he screamed with every movement that was made. We took his clothes off of him and he was once again in a hospital onsie. His heart was racing, and he was fighting for every breath he took. They gave him oxygen. He looked so tiny in that big bed, but, for a moment he was quiet. Within minutes of all this happening, the director of nursing, and the Neonatalogist had come to see Johnny. They had brought a bed from the NICU, and were transferring Johnny to their care. This is not normal practice for a baby that has been released from to be readmitted to the NICU, but they saw a very sick baby that would need more care than the peds wing could give. They were right.

I didn't know this would be the final time I would hold my Johnny while he was conscious, it wouldn't be for another 4 evenings until I would hold him close to me again.

In the NICU:

They wheeled us to a private room. We could see the other babies, they were so tiny. It made Johnny look like he was enormous, and sadly also the most sick baby in there out of 9 little ones. They began taking stats on him, and hooked him up to machine after machine. There were wires coming from both sides of the bed, this was just the beginning. We were asked to leave the room for a while so they could finish doing what needed to be done. When we returned even more wires, and a ventilator. They were helping him breath to take the pressure off of him, he still was fighting through ventilator and trying to breath on his own. He looked so tired.

They started him on an antibiotic almost immediately, and he began getting IV fluids. He was very dehydrated. A chest x-ray showed infection in both of his lungs. The results would show it was consistent with aspiration, he had pneumonia. They explained that blood results indicated that he was septic. In the back of my mind I knew this was not good, but I felt a small amount of relief that he was finally getting help. He would continue to get worse through the evening, having obvious seizures. It was scary to see this happening to my little tiny boy, I wanted to hold him so desperately, at the time we were not supposed to touch. We stood silently watching him, hoping and praying he would be okay. He was given medication to help calm the seizures, and morphine for pain. The combination of these medicines would put him in a sleep that would help him relax and let the machines do the work that he was fighting so hard to do.

It would be the last time we would see his precious eyes open, if I had known I would not have gone home, I wouldn't have left his side, not for one minute.

Coming home that night without our son left us feeling incomplete. I spent the night unable to breath from bawling my eyes out, we felt so lost. The kids handled things well, but, were upset that they weren't allowed to see him while he was in the hospital, the initial 7-10 day stay seemed like forever to them. It did to me as well. We attempted to sleep that night, neither one of us were able for most the night. We took turns drifting in and out, it was so hard to turn off what was playing over and over again in our minds.

The morning brought with it a little hope. Hope that Johnny would be feeling a little better after having medicine and fluids. A call came with an update before we left the house to return to see him. It wasn't the good news we had hoped for. They said he had had a rough night. We were told they would call us if things changed, but we didn't hear anything till that morning. We felt defeated. They called back 5 mins later, they wanted to do a lumbar puncture and needed two nurses hear that we were giving them permission to do this. I had a knot in my throat as I told the two they had our permission. I was terrified at the prospect that this could be meningitis. I knew what it meant, and it would not be good news if this ended up being the diagnosis on top of the other things they had already found.

We were standing over Johnny watching him lay still in his bed, still fighting to breath through the ventilator off and on, but letting it do most the work. The neonatalogist arrived with the news that it was meningitis. A very aggressive form, one that would take 3 weeks of antibiotics to clear it up. He seemed a little surprised as he was telling us this news, and I felt like I had been dealt a blow unlike anything I had felt in my life. The side affects alone were troubling. We were ready to fight, and Johnny seemed to be fighting as hard as his little body would allow him.

3 different antibiotics; this would be the lifeline for him to get better. We would find that same day that he would need platelets, and a blood transfusion, he would need several times during his stay. They ordered ultrasound to look at his brain, and also an EEG to check for seizure activity. Initial results were showing the meningitis came from E-Coli bacteria. How could this be? Testing would be done on the placenta and umbilical cord to check for this bacteria. These results would not come for days. We would also wait for the EEG results to be read for longer than we should have had too. It would be Friday morning that these results would come back showing no seizure activity. They had taken him off of seizure meds the night before the reading came back, he should have been showing some sign of waking up. There was nothing.

Friday morning, we arrive at the NICU and I see something going on while we are scrubbing in, something in Johnny's room. A nurse comes out to tell us he is going for a CT scan, they had to transport him there and it was a big ordeal. She told us to come in and see him before he was wheeled off. I was very uneasy about how everyone was acting, but, the nurses did their best to be as calm as possible. Within an hour he was back to his room, but we were met with the Neonatalogist, and the nursing director who asked us to sit down in the waiting room.

It would be the worst possible outcome, one we did not want to hear. There was bleeding throughout every part of his brain, it was the worst they had seen. He would not, and could not recover from this, there was no more they could do, but make him comfortable.

The unspeakable grief we felt was overwhelming. Nothing in this life can prepare a parent to hear this type of news. We both sobbed, our bodies shook in grief, the ache we felt actually hurt deep within. We had no words, just tears and immense heartache. I wondered how we would break this terrible news to our kids, they loved him and had prayed so hard for him to be healed. It was devastation, our world would never be the same.

That day, when we sat with Johnny, we were able to touch him, we both sang to him and told him how much he was loved. It would be later that afternoon that I would be able to hold him for the first time since we had brought him to the hospital for admitting.

It felt so good to hold my son again, I couldn't imagine having to say goodbye to such a perfect little boy.

We were just beginning to understand what that would mean.

To be continued...