Our son Rylan would not be here today were it not for the Doctors and Nurses in the KDMC Neonatal Intensive Care Unit. Rylan was born with Laryngomalacia (Laryngeal Malacia), a condtion of the airway in which the cartilage has not fully developed yet. It’s not a life threatening condition, and babies eventually grow out of it, but Rylan had trouble eating which lead to a round of tests to rule out other, more serious conditions.
During a routine bronchoscopy, Rylan had a bronchial spasm and both lungs collapsed. He was without air for 11 minutes, but was revived by the staff of the NICU that inserted chest tubes into his sides, and performed cpr. By the grace of God, Rylan recovered with no ill effects, and is a very healthy and happy baby today. All that he carries with him from that dreadful day are the cross-shaped scars on both sides of his chest that will always serve as a reminder of God’s faithfulness and of the angels He placed in Rylan’s path that day.
Rylan’s Miles to Miracles Foundation was established to benefit Neonatal Intensive Care Units and the miracles they serve. We know that were it not for them, our precious baby would not be with us today. We can never repay what they did for him, but we can at least attempt to through donations of clothing, toys, blankets, training, and equipment.
Here is Rylan’s complete story..
On Monday February 25, 2008 at 5:10 PM, our second son Rylan Andrew Prater entered the world as a 9 pound “Bouncing Baby Boy”! Because of his size, he was born Cesarean and emerged kicking and screaming. Little did Marci and I know that this baby was born to be living proof that God is in control and that He is still performing miracles.
All parents know what I mean when I say that the minute the umbilical cord is cut, there is a new form of worry for your child’s well being that instantly kicks in. The minute Rylan was born, we wanted to know if he was ok, had all the parts he’s supposed to have, and we couldn’t wait to hear him cry so that we could receive confirmation that he’s alive and well. Rylan entered the world and had everything in all the right places, and of course, he let out a pretty nice scream.
About ten minutes after birth, I went with him to the nursery and passed through a mob of family and friends that high fived, hugged and congratulated me. It was a bit surreal and my head was dancing…. actually, I don’t think my feet touched the ground for about an hour.
When I got the the nursery, the nurses began to weigh, measure, and do a bunch of stuff to make sure he is OK. As I stood there, I heard a knock on the window. I looked over and saw my five year old son Will giving me a big thumbs up. I simply smiled back and returned the salute. But, there was a problem…
When the nurses placed the Oxygen Saturation monitor on Rylan’s foot, the readings were below what they should be. They assured me it was simply a need for more suction and they would send him to the Neonatal Intensive Care Unit (NICU) for treatment. I wasn’t worried because the same thing happened to Will when he was born.
I left the nursery and went back into the hall. Will came running to me crying his eyes out. I instantly picked him up and asked him what was wrong. In his small little voice, he sniffled and said, “I’m crying because he’s so cute”. We had a big cry and hugs then I went back in to check on Marci.
When I got back into the Operating Room, Marci was fine and they were just finishing up the final procedure- a tubal… Yes, Rylan is our swan song when it comes to having kids. She was doing well and we were later moved into the recovery room where she was allowed to eat ice chips. But eventually, we moved on to our room where we would be camping out for the next few days.
About an hour later, they let Rylan out of the NICU and sent him down to us. We held our new son, prayed over him and thanked God for trusting us enough to give us this precious little one. He was beautiful and we spent a while trying to figure which parts of him look like who (my favorite game to play). After a couple of hours, we sent back to the nursery and crashed.
The next morning, I went down to the nursery and got our kid. We spent the day in the room with him. We played, held, and fed him. And, my favorite part was the two hour nap we took in the easy chair while he slept on my chest.
BUT, there was one problem…
I noticed that every time I fed Rylan, he would drink for about twenty seconds and then start coughing and choking. I took it that he just didn’t have the bottle thing figured out yet and it would take time. So, whenever he choked, I’d burp him and he’d get better, somewhat better. But, he was also squeaking a lot. Marci even asked me one time if I thought he sounded like a monkey it was so bad. However, we remembered that Will squeaked and figured that it was just how he was supposed to behave.
About 11PM Tuesday night, I took Rylan down to the nursery and left him with a nurse we really liked named Carol. She promised to take excellent care of him and would let us know if anything changed. Well, things were about to change…
6:45 AM Wednesday (February 26th) morning, Marci and I had just woke up when there was a knock at our door. We said, “Come in”, and in walked Nurse Carol without Rylan. We both sat up straight and listened as she told us Rylan had given her fits all night during feedings and she was afraid he had something wrong with his throat. She also told us that she was admitting him to the NICU for evaluation by Dr. Knight.
As you can imagine, we were scared so we asked her what she thought was going on. She told us that she thinks he’ll be OK and that he just has a floppy windpipe. Nothing to worry too much about, but it needed to be checked and verified. We felt a lot better after talking to her but there was still a concern.
As she left the room, we didn’t know what to think. We weren’t too worried, but all of that was about to change. Littlebeknownst to us, her admitting Rylan to the NICU, was the precise moment that we shoved off for a long ride into the deepest valley we had ever been in…
When we were told our 12 hour old baby was being admitted to the NICU, we were obviously scared. We understood why he was admitted (the choking episodes), but we were terrified that there was something terribly wrong with him. Of course, the Enemy attacked and fell upon us with a spirit of worry and doubt. We worried that he may need some type of surgery and we even doubted that he would be ok. It was a dark time and we prayed together while I held Marci on the bed. When we had got it together, Marci and I took showers and had some of that great hospital chow for breakfast.
It was around 11 AM when we first met the Doctor that would responsible for treating Rylan. Dr. Scott Knight came in, introduced himself, and had a seat. Obviously, we wanted to know what was going on and we asked him to tell us what his thoughts were. He explained to us that when babies choke like Rylan was, it is most likely due to a fistula… (A What???). Obviously Dr. Knight has the heart and patience of a teacher because he went on to explain how many times, babies are born with premature airways and esophagus. Especially big babies (like Rylan), can have a fistula which is a tiny hole or opening that connects the esophagus and the trachea, and allows formula to travel into the airway, and cause the baby to choke when they eat. He assured us that it’s not that big of a deal, but it had to be fixed.
We asked how it was fixed and he told us that it takes a small surgery.
SURGERY?!?!
He explained how the Surgeon would make a small incision under the arm and go across to the throat and fix it with a stitch. Obviously, we were once again freaked out. We got even more freaked out when he told us that if the diagnosis came back as a fistula, the hospital would fly Rylan in the helicopter to University of Kentucky Children’s Hospital. We asked when, and he told us probably this evening. Fear hit again!
So here I am, a child in the NICU facing a helicopter ride and surgery, a wife that was cut in half during the C-Section less than 48 hours ago, and a five year old son that started crying when he saw his Mom crying. I asked the Doctor to tell us his course action to drive this diagnosis to a final one. He told me that they would do a barium swallow Xray to see if any barium was traveling from the esophagus to the trachea. If negative, they would do a Baby Gram Xray to look for anything else out of the ordinary, and they would start an IV and start giving fluids. I asked if I could see Rylan and he said sure.
I walked down the hall toward the NICU where I knew my baby was lying and facing a long list of tests and maybe even surgery. When I got to the NICU, I buzzed in and the nurse opened the door. When I stepped inside, she told me that they were getting ready to put an IV in his arm but I could come in and watch. AN IV!!! I didn’t want to see that so I declined the offer and went back to the room. When I got there, Marci was obviously upset, so I sat down with her and our Youth Pastor friend (that “just happened” to show up) prayed over us.
For the next few hours, we waited… and waited… and waited for the tests to come back. We were lucky that Marci’s Aunt is the business manager in the Radiology Department so we had an inside track on what was going on. But most of all, she was able to speed things up a little.
It took a couple of hours, but we were given good, if not great news! Rylan had passed the Barium swallow test and the Baby Gram had come back excellent!!! The barium swallow pretty much ruled out the fistula so we weren’t worried about having to pack up and shoot down to Lexington. We praised God for these great reports and when I talked to Marci’s Aunt, she told me that God spoke distinctly and told her it’s because of prayer.
Now with some semblance of relief, we went to visit Rylan. We found him lying in a crib with an IV in his arm and several monitors hooked to him. We cried because of the obvious pain he had gone through, and our hearts ached because all we wanted was him in our room, with us. When we finished our visit, the walk back to the room was a tough one because we were leaving our baby.
In a little while, Dr. Knight came back in and told us the results of the tests. We didn’t let on like we knew they were all clear, so seeing him was a good thing (we actually could have kissed him at that moment). He told us that Rylan probably only has a floppy airway (Laryngomalacia) and not a fistula. BUT, to be 100%, he wanted to do a scope of Rylans throat and trachea and put it to bed once and for all. We asked about the scope and he told us that it would take about three minutes to go in and look around, and it would be a quick and painless procedure. He also told us that he was going to give Rylan the day off from eating and wait until the morning to try and feed him again. We had obvious concerns about the scope procedure, but we said “OK”…
Little did we know that the letters “O” and “K” would become the spurs in the side of the horse we were riding into the deep valley…
Thursday February 28, 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 Thursday 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 nurseURs 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 told us that they were going to let Rylan rest up for the rest of the day and not do anything else. His plan was to let him sleep and then attempt a bronchoscopy tomorrow (Feb 28th). He 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.
On Thursday, 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…
I woke up about 6:00 AM on Friday the 29th. I saw Marci and her mom already awake and they told me that they had little to no sleep. I remember thinking to myself how this was supposed to be Rylan’s birthday. I also pondered if all of this would have happened had he been delivered today. I’ll never know the answer to that, and I guess it really doesn’t matter because it was not in the cards.
Dr. Knight came in about 7:30. His hair was a mess, his clothes were too, and I figured he’d probably been here all night. I later found out that he had indeed been up all night in the NICU, by Rylan’s crib. He had been checking and evaluating him, and also planning his course of action.
Dr. Knight started to explain how Rylan had taken 10 years off his life and how he was sorry it happened. We asked what was next and he told us that he wanted to test Rylan for damage from the trauma. He had an ultrasound of the head set up to check for swelling, and EEG to check brain activity, possibly an Echo Cardiogram to look at his heart. We dreaded this round of tests, but most of all, we were sad to here that his work week was ending and he would be handing Rylan over to Dr. Bonafacio that would take great care of him. We hugged him and thanked him before he left.
So, we waited… and waited… At about 11, my Mother-in-Law and I walked to the NICU and met Dr. Bonafacio. She was a very pleasant person to talk to and I could tell she was very compassionate. She told me all of what Dr. Knight had told me with one exception: She said they would probably attempt to redo the scope tomorrow. I almost fell in the floor when she told me this, so I told her that we had some real reservations and would want to talk more in depth about it when the time comes.
Why we were there, Rylan had an episode. All the sudden, his heart rate changed, and his oxygen saturation bottomed out. There were alarms going off and nurses rushing everywhere. I stood there in shock, as the nurses began working on him. It was like something out of the show ER and I was terrified that I was about to watch my son crash on the table. When the Dr. made it to the table, she instructed the nurses to suction Rylan. When this was done, all of his vitals returned to normal. When all was well, Nana and I ducked out the door.
We started hearing back from the tests at about 2:00 PM. The brain ultrasound came back negative for swelling, then the EEG came back normal, and finally, we heard that the Echo came back normal as well. We also got a confirmation that his blood gases were great and that his levels of other “Stuff” was much improved from this morning.
We had alot of visitors and lots of prayers were said on this day. I heard from folks all over the country that had heard and were praying for us daily. We could feel the prayers and they were helping us get through. One thing that really touched me was the fact that my boss had a special Mass held in Rylan’s honor for healing. He told me the mass was attended by over 200 people, including every child from K-8 at the Catholic school next door, and that it was very good. I do not know much about mass, but I was humbled by the fact that an entire Church and school paused to pray for the healing of our child.
During our last visit of the evening, Marci placed a small index card in Rylan’s crib that said the following:
“Rylan, We Love You! Keep fighting and stay strong! Always remember… THANK YOU THAT JESUS BORE OUR SINS IN HIS BODY ON THE TREE AND THAT BY HIS WOUNDS (STRIPES) RYLAN WILL BE HEALED – 1 Peter 2:24″
And that’s where we left it for the duration of his stay. His nurses said they would read it to him whenever they were attending to him. We were blessed by a NICU staff of spiritual Christians.
Friday night, we slept a little better and woke up Saturday with an optimistic outlook. We went down to see Rylan at 8:30 and found ourselves at rock bottom again. When we got to the NICU, the weekend crew of nurses was on duty. We didn’t know any of them and the nurse assigned to Rylan didn’t have much to say about his condition. This was probably because she had just come on, but we were so used to asking questions and getting an answer that we were upset. Later on, we got to know her and turns out she is an awesome nurse.
I LOST IT…
I started weeping because I couldn’t control it. I wanted him to get better and I even remembered saying “I wish he would just grab my hand!” I was hurting and Marci was agonizing with me. It was truly rock bottom and the worst thing about it was that I kept hearing the nurses behind me talking about everything from Girl Scout Cookies to what food their kids spit up while eating. I know it wasn’t their fault that Rylan was sick, but I guess it hurt so much because their lives were going on just fine and dandy, while we seemed to be crawling on our bellies through a swamp. We had to get out of there so we retreated to our room.
When we got there, we broke down. Thank God for Marci’s mom that was there and gave us the voice of reason. She reminded us how all of the tests were coming back good and Rylan was getting better by the minute. We knew this was the truth, but we were so beat down and the Devil was hitting us hard with doubt and diminishment.
He was getting better by the minute! The problem was, it was like watching grass grow: You know that it is growing, but you just can’t see it happening. We prayed together and calmed down a little.
Throughout the day, we had several visitors. It was nice to see friends come by that cared about us and our family. Along with visitors, good news kept pouring in. Rylan had another chest Xray that came back clear and also, his blood work was getting better and better. I’ll never forget when Marci’s nurse Jenny came in and told us that he’s not fighting for his life, but he’s mending. Things were looking up!
Later, I met with the Dr. Lea Bonifacio that took over for Dr. Knight. She told me that she hoped to be able to wean him from the vent and hopefully take him off of it in a few days. Actually, they clamped the chest tubes a couple hours after I talked to her, because Rylan no longer needed them. And, they had reduced his oxygen level to 21%, which is room air!
Saturday night was a long one. All night long, the loudspeakers kept going off in the hallways announcing that someone had coded. “Code Blue Heart and Vascular”… “Code Blue ICU”… “Code Blue ER”… and about three helicopter arrivals and departures made the night-time anxiety levels rise. I don’t think Marci, nor her mom slept a wink. I slept more than them, but was awake for the codes.
BUT, Sunday saw the dawn of a new day. We went to the NICU at 9:00 AM and saw Rylan. He still looked the same, but we now were much, much, much more optimistic. We talked to him, prayed for him, and left after about 30 minutes or so. Back at the room, we waited…
In the past few days, the nurses started becoming more and more concerned with how high Marci’s blood pressure was staying. She never had hypertension until now. First of all, post pregnancy hypertension is normal and all of them kept telling us that it would come down. Also, with the stress we had been through, it was understandable. But when they took her BP on Sunday morning they said it shouldn’t have been that high even if she had run up the stairs! Then, they took mine, and it was even higher. SO, the nurses put both of us to bed with cold rags on our heads and told us to calm down…
By 11:20 AM, I felt calm enough to go to the NICU. I went down and scrubbed in. The first person I ran into was the charge nurse that told me they had just finished doing a whole bunch of things to our son. This scared me, but she was smiling the whole time! When I got to his crib, I realized that the tubes were gone from his chest, and he was OFF THE VENT!!!! I shouted as I ran out the NICU and down the hall to tell Marci. She cried, I cried, everybody cried! We were on a high until they told us they were going to bottle feed him too. Then we got down. We knew that if he failed the bottle feed, we’d be off to somewhere for another scope.
At about 1:00 PM, the Dr. Bonifacio came in and told us that Rylan had taken 20cc’s of a bottle and did fine! Again I shouted!!! She told us she would keep feeding him ever four hours and monitor him. For the rest of the day, he did great on the bottle and things were really looking up for sure.
But, Monday dawned with Marci’s blood pressure still out of sight. She was averaging around 170/110 and at about 3:00 PM she got very sick with headache and vomiting. They took her for a catscan and gave her medicine. Now, I was more worried about my wife than my baby!
We had already stayed two extra days while they monitored the blood pressure, and it looked like we’d be in another night. I worried about her blood pressure but the catscan came back fine. But most of all, I was worried about leaving the hospital without our baby and going home and having to see his nursery empty. That I dreaded most…
We had a pretty good night of sleep in anticipation of spending more time with our son in the NICU on Tuesday. When we went to see him Tuesday morning, his nurse Pat showed us how the site of his chest tube penetrations looked like little stripes that he’d have forever. We had already claimed the healing scripture about stripes and now we could see it!. Marci fed him and they told us he could possibly go home on Thursday after finishing his antibiotics.
That evening, we got the boot from the hospital. Even though Marci’s BP was still sky high, we had to leave without our little one there. We knew he was in good hands, but it just didn’t seem right to go home without him. We went to our house and stood in the nursery and cried. We were home, but missing our baby.
Wednesday, I went back to work. As you can imagine, my mind was elsewhere, but I was blessed to have so many of my co-workers stop by and ask about Rylan. I was humbled by so many telling me they had been praying. I also had many opportunities to tell of the ‘God Thing’ going on with my child. After work, Marci and I went to the NICU and I got to feed my son. I was terrified, but it worked out pretty good and they told us to be ready tomorrow to take him home. We were excited! But scared too.
Thursday morning, I went to work waiting on the call to come get Rylan. Marci and here mom went on to the hospital and I would have joined them were it not for the fact that I had to go at lunch and buy a rocking chair. I know, I know… wait until the last minute. But I found the perfect chair and threw it in the back of the truck. Right after I started toward the house to drop it off, my phone rang and it was the nurse in the NICU telling 
me to head that way.
We took Rylan home at 3:00 PM Thursday March 6, 2006, ten days after he entered this world. In his first 10 days, he had been born, then died, been resuscitated, was put on a ventilator, poked and prodded countless times, Xrayed 8+ times, and all the while hooked up to strange machines that monitor every aspect of his body. He was as sick as a newborn can possibly get, but by God’s grace and tons of answered prayers, he never left us permanently.
The Doctor we went to see is known as the “guru” of Ear, Nose, and Throat Pediatric Surgeons. Dr. Robin Cotton is his name, and he has been at the hospital for over 35 years and has done everything from airway reconstruction to cleft pallet repairs. His list of Medical Boards he is a member of is substantial, and he is world renknowned as the best of the best for kids with breathing problems.
When he walked into our room, he was a pleasant enough guy and he examined Rylan very carefully. He told us he wanted to do a scope and see what was going on. Obviously, the word “SCOPE” hit our panic button because that is what caused Rylan’s lungs to collapse in the first place. We asked if there was a chance of this happening again, and he told us absolutely not because he would be going up through the nose and only looking at the top of the trachea. I think he was a bit confused as to why Rylan was scoped to begin with…
As I held Rylan, he inserted the scope into Rylan’s nose and began looking around. Obviously, Rylan threw a fit and turned as red as molten steel. While I watched the doctor look through the scope, I’ll never forget him saying,
When Marci told me she wished she could go somewhere and just cry, what she was saying was that she felt like the weight of the world had been lifted from her shoulders. We had been told by others that Rylan was OK and even some of the Doctors we know have told us the same thing. But it wasn’t until we heard it from a true expert in Pediatric Ear, nose, and throat that we could take it to heart.That was in April and as I write this in December, I’m reminded of God’s love and how he will never give us more than we can handle. His grace was sufficient to carry us through our trials then and in the future. We learned what it meant to truly suffer. And in own our brokenness, we saw Jesus.
So, as I lie here on the couch with Rylan sleeping soundly on my chest, I will be the first one to admit that God really is in control. I also know that by His stripes we are healed. It is true that God has a big plan for this kid. Marci and I are looking forward to seeing that plan play out! And we are passionate about helping other babies and parents that are walking down the same path that we have trodden. It’s a rough and rocky trail, but there is a light at the end of that tunnel.
