Rylan the Miracle Baby... (Part 3 The Darkest Hour)

Wednesday February 27, 2008 was the hardest day of my life. Nothing I had faced in my 36 years of life were as tough or as heartbreaking than what Marci and I went through on that day.

As that Wednesday morning dawned, we got up as usual, had some breakfast and got ready to face another day of tests for our child. Rylan was still in the NICU, but we had a very optimistic view of his condition, and even the Doctors and nurses were telling us that it's probably just a floppy airway and nothing more. BUT, to get to that final diagnosis so they could release him, a scope had to be inserted into Rylan's airway to verify there were no fistulas (holes) between his trachea and esophagus.

Marci and I walked to the NICU, checked in, scrubbed up, and went to visit Rylan. He was in a crib, pink as he could be, and looked like the prettiest and happiest little baby I had ever seen. Even the nurses (which were all AWESOME!), commented on how great he looked and how they had prayed for him to have a good feeding today.

We left the NICU and were told to be back around 1:00PM for a trial bottle feeding. If all went well and he fed well, they'd discharge him and we'd have to work on feeding techniques and nipple types.

Eventually, 1:00 PM arrived and I went to the NICU. I was greeted by Rylan's nurse Amanda that brought me in and pulled up a chair for me next to his crib. She brought a bottle over and I started praying. She smiled sweetly and told me everything was going to be alright. I started prayed...

When she gave him the bottle, he drank it! He did so good, we were smiling from ear to ear. Everything went well for about 20 seconds, and then the Oxygen Saturation meter started going off. We changed to a low flow nipple, but it was to no avail. My heart sank in my chest... we were back to square one. He'd failed the feeding test and would need the scope to see if there was a fistula too small for the Barium swallow to detect. Amanda apologized and I told her it was alright and I knew God would take care of it.

I headed back to the room and told Marci he failed the test. Obviously, she became upset and we both began to worry about the procedure. But Dr. Knight came in and assured us it would be quick and probably only take about 5 minutes to complete. He planned on doing it at 5:00 PM and he had the best Doctor lined up to do it.

So we waited and worried... Of all things, I remember thinking about that stupid Tom Petty song, "The Waiting is the Hardest Part", and for once, that song clicked. Then at about 3:00PM we took Will down to the NICU and let him look in at Rylan while I held him up to the window. Will was smiling from ear to ear as he told Marci, "There's Little Pinky. That's what I like to call Rylan because he's so pink!"

At 4:00 PM, the PA for the Doctor that would be scoping Rylan came in with release papers in hand. She sat them on the bedside rolling desk and started telling us that they release the Doctor to perform the procedure, AND that although rare, complications can arise that can cause strokes and even death. Marci began to cry as she signed the forms and all I could do was hug her.

Before the PA left, I'll never forget her turning to us at the door and saying, "It'll only take about 5 minutes to do the procedure. It'll actually take us longer to set up the equipment than it will to do it." That was at 4:15 PM... And the clock was ticking...

With each minute that passed, our anxiety level increased. I was pacing the floor when our door suddenly opened. I sat down on the bed when I realized it was Dr. Nelson (the Scope Doctor) and his first words were,

"It didn't go well at all... We had some serious complications with your son"

We sat there stunned as he explained what had happened. He told us:

When he inserted the scope into Rylan's throat, things went well. But, just as he pushed through Rylan's voice box, Rylan had a bronchial spasm and both lungs collapsed. When that happened, they lost him for about twenty minutes and performed CPR while they inserted chest tubes and intubated him on a ventilator.

We sat there stunned. Dr. Nelson could only say that he was very sorry, but other than that, he just sat there stone faced. I didn't know what to say to him, so I asked him to tell me again what had happened. He went through the same story word-for-word and sat there staring at me with a blank look on his face.

By this time, Marci was crying, and when she cried out, Will began to cry, my Dad was in the room and started crying, then my Mom even walked in and learned the news. The Doctor was still sitting there looking at us, and I had to tell him that I didn't have any questions and asked him to please leave. When he went out the door, we all lost it, especially Will. My Mom thought fast and said she would take Will home with her so they quickly exited. I could only set on the bed and hold my wife while she wept. I cried a little too, but I was too stunned to do much else.

A few minutes later, Doctor Knight walked in with tears in his eyes. He sat on the bed next to Marci and explained how he was sorry, and how he wished they had never done the scope, and how he wished he could turn back time, and how... Marci told him that she didn't blame him for what had happened and she knew he was sorry. Dr. Knight then wrapped his arms around her, prayed for her, and rocked her while we all cried. It was at that moment that I realized Dr. Knight was not only a Christian, but also the most compassionate Doctor I have ever met.

We asked him if we could go see him and he said we could, but he had to prepare us for what we would find. By this time, there was a crowd of people around us. There were family members, two pastors, and many others that had "just happened" to show up when they were most needed. I'm sure God was prompting their hearts...

When we went to the NICU, all of them followed us. At the NICU, the first thing I noticed was that Rylan's nurse had tears in her eyes. In fact, I didn't see a dry eye in the place. We actually broke protocol and the NICU folks said that everyone could come in to Rylan's bedside. Marci and I found our little one so sedated, he was paralyzed. There were chest tubes, that looked like big needles, sticking out of each side and he had a ventilator tube in his mouth. At that moment, all I could think of was how only two hours ago, I had held a perfect looking baby up to the window for Will to call him 'Little Pinky', and now, he was the most critical child in the NICU.

Our friend Pastor Peter Hall came over and led prayer. I was too heart broken to even be able to hold my head up and I simply wept unlike I've ever before. Marci and I were thoroughly heart broken and I was aching from head to toe. After we prayed, we left and returned to our room. I learned later that our Pastors stayed behind and prayed with Doctor Knight and his staff. When I got to the room, I noticed a ton of people all looking at us so I immediately went into the bathroom and sat down. I bawled into my hands and the tears were running through my fingers. I have never, and hopefully will never have these painful feelings again.

After composing myself, well... as good as could be expected, I left the bathroom and sat on the bed and held my wife. We cried together and all we could ask was why did this have to happen. Marci kept questioning why? Why God? She kept telling me how she had prayed every day and night for Rylan all through her pregnancy and just wanted to know why this had to happen. I didn't know what to say so I just sat there silent and held her, rubbing her head and telling her God is in control. Which is hard to do because everyone questions if He's really in control during times of hurt.

After we calmed down a little, we started hearing the cries of infants in the rooms on either side of us. Every cry we heard, brought tears to our eyes because all we wanted was our little one to survive and live so that we could hear him cry. Both of us had doubts he would leave the NICU alive, but we tried to suppress them.

The Doctor that delivered Rylan (Dr. Ford) came in and talked with us. He was optimistic in all but one area: He was worried about the fact that Rylan had gone twenty minutes without oxygen. He did say he was optimistic because they had pumped his heart and performed CPR, but that after 14 minutes, you have to consider brain damage. Our hearts were broken. Marci was upset by the fact that she had her tubes removed and that this was our last baby if Rylan didn't make it. She told me later that she was afraid of letting me down by not giving me another son. I assured her she had not, and we'd take what God gave us. Dr. Ford chimed in and said, it could still be done and not to worry about that.

In an hour or two, a nurse came in and told us we would be changing rooms to get away from the sound of crying babies. They knew we were upset and had a room with no one on either side. We jumped at the chance to move and since so many were in the room, everyone grabbed something and we left the room where we had heard the worst news of our life, never looking back.

After settling into our new room, one of my best friends Steve Salyers showed up right when I needed him most, and I had some one on one time with him. While we talked, he said something that I treasure more than anything. He simply looked at me and said:

"Hey D, God wouldn't have brought him back if He didn't have a big plan for Him."

Those words comforted me more than anything else I heard. AND, I took them, claimed them for Rylan, and stood on them.

Later on that evening when the visitors had departed, Marci and I went back to the NICU and saw Rylan. Once again, we wept at his crib as we saw the tubes in his side and watched his little chest rise and fall by way of a mechanical lung. The heartbreak sat in and both of us vocalized the fact that we didn't think he was going to make it. This was obviously an attack by the enemy because we were at our lowest of lows. We prayed for our son and prayed against the enemy. We also prayed for the other little ones in the NICU. One of our Nurses came to us before we left and let us know she would be praying fervently for us and our baby. She also told us that the Nurses on the floor are all Christians and they had already been praying together. We thanked her and went out the door.

We arrived back at the room and I guess it was out of exhaustion because I collapsed onto the couch and instantly went to sleep. Marci's Mom slept in the bed with her and neither of them slept much. This was the hardest day of our lives...

TO BE CONTINUED