Friday, July 9th, 2010: I can't believe it, but the doctors are sending us to a discharge class today! They told us this morning that in six or seven days we may be going home. Rylee is breathing totally by herself now - and, yes, the drs are still amazed at her rapid recovery. Less than three weeks ago Rylee was just moments away from going on life support and drs were telling us that Rylee would be in the NICU at least six weeks to two months. Then, about four or five days ago, she began to make huge progress. I will add some more to this update later this evening. Right now I have to run back to the hospital for the discharge class. Thanks again for all your love and prayers!
Wednesday, July 7th, 2010: Sorry I went another day without an update. It's just that we are finally getting to hold Rylee so we've been spending as much time as possible at the hospital with her. She is continuing to amaze the doctors and nurses with her rapid recovery. On Tuesday afternoon, the drs turned off the last breathing aid machine that was helping her. Rylee is breathing almost totally on her own right now with only a bit of extra air going in through a small nose tube. Her fever is gone, but her lungs still have some fluid in them and they still have some infection. However, nothing seems to be affecting her breathing anymore. The nurses let us dress her, feed her with a bottle, and we finally got to hold her!
Now, I have to tell you that holding Rylee was quite an experience for me. Jessica got to have some kangaroo time with Rylee first. Then it was my turn. All the nurses in the room kept telling me that I should have the "skin to skin" experience with my little girl. I was a little embarassed to take my shirt off in front of everyone. But, finally I gave in and ripped my shirt off to the dismay of everyone watching. Then, for a whole hour Rylee's little bare self slept upon my chest. I could feel her heart beating...and I could feel her chest moving up and down with every miracle breath.
For a whole hour I just sat there holding my daughter. I had never held her before...but in a single moment we were united. In a single moment I could finally BE her father.
As I reflected upon this intensely profound experience, these questions came to my mind: Does God intend us to relate to him like a painter relates to his painting? Like a watchmaker to his watch? God, the creator, we, the creatures - nothing more, nothing less? Or, maybe God intends us to have a different kind of relationship with him - something more like the experience I had with my daughter. Maybe the problem is that something is seperating us from him, something like an illness or a disease, that is keeping us from knowing God as our Father. You see, Rylee was born into a world of pain, of tubes, of noise, of pokes and of struggle. Yet, through all of it, the voice of her daddy kept speaking to her - kept telling her she was loved. From the moment she was born, Rylee recognized her daddy's voice. Everytime she heard it, she would move or flicker her eyes.
The same is true of us - every one of us. We are born into a world of sin and pain, of brokenness and defeat. Yet, every one of us has heard that quiet voice deep within our being telling us that we are loved. This world of hurt is all we know, yet our Heavenly Father wants to bring us into a place of peace and rest - he wants to simply hold us and comfort us. Sadly, many of us choose to remain in our place of sin and pain instead of turning to the one that can heal our very souls.
Rylee and her daddy found a wonderful place of unity and rest today. Now it's your turn to have some "skin to skin" with your Heavenly Daddy. He's waiting ;-)
Monday, July 5th, 2010: Sorry for my delay in getting an update out. I drove back home on Saturday and got back to Loma Linda late Sunday afternoon. Rylee had a little bit of a roller coaster weekend. On Saturday afternoon the drs decided to take Rylee's ventilator out. They gave her a less invasive nose breathing tube instead. They also turned down her morphine and other pain meds. However, Rylee got a fever, and started shaking very bad. The drs concluded that they weaned her off the meds too fast, so they turned them up again and will wean her off more slowly over the next few days.
By Monday morning, Rylee wasn't shaking and the drs decided it was time to try and let Jessica hold her for a longer amount of time. They had tried to let Jess hold her on Sunday, but Rylee was in so much pain that it didn't go so well. So, at about noon, Jess will get to have some skin to skin with her daughter. Maybe later this afternoon I'll get to hold her too!
This morning when Jess went in to see Rylee, she asked Rylee's RN, "So, is Rylee still the worst baby in the NICU?" The nurse responded, "Nope. She doesn't get that award anymore." Of course when we hear things like that, we get excited becasue we know that Rylee is making such good progress. However, it also made me stop and think about the other families that have very sick babies in the NICU now. I realized that sometimes when we go through a trial, we get accustomed to having everyone's attention and concern upon ourselves. With all the focus on ourselves, we can easily forget to reach out with compassion to others that are hurting.
Throughout all this I am learning to not let this trail consume me. Instead, I am learning to let this trial open my eyes to the hurt and fear that others are facing. Thanks again, Rylee, for teaching me another important lesson ;-)
Oh, I know I promised more pictures...I will get those up this afternoon.
Saturday, July 3rd, 2010: Despite Rylee's ongoing infection, the drs and nurses were more excited than I have ever seen them before. Yesterday, two drs that have been working with Rylee since the very beginning came up to us and said that Rylee has made so much progress in the last two weeks. One of the RN's showed us the timeline of her x-rays. Wow! What a difference! A little over a week ago, we could hardly tell that her right lung was even a lung. Now today, it was almost completely filling her chest cavity. This morning, they stopped giving her extra oxygen for the first time, they turned down her morphine, and put her on a very low ventilator setting. Rylee still has some pretty bad patches of infection or inflammation throughout both lungs, but even those patches are starting to clear up slowly.
I think the simple lesson for today is that when we allow the peace of Christ to rule in our hearts instead of fear, we find victory. If you don't know what I'm talking about, read the daily update from yesterday.
Thank you again for lifting little Rylee up in your prayers and for helping our family in so many practical ways. I will post another slideshow as soon as I can for all of you that like pictures ;-) Until next time...
Friday, July 2nd, 2010: Our little Rylee had a tough Thursday evening and on into Friday morning. Some kind of bacteria got into her lungs again and lots of nasty stuff has been coming up her breathing tube. The drs put her on some anti-biotics that they hope will clear things up again. It's hard watching her struggle so much just to breathe. But, our little valiant one fights on, and God's grace continues to surround her.
It's funny how our human emotions change so rapidly. No matter how much hope we have, we still can't stop asking the "what if" questions. One doctor scared us recently because he decided to test and see if Rylee has a fatal lung disease which would only give her a month or two to live. Of course it takes two weeks of waiting for the results to come in. So, here we are after a not so good day, and the tears start coming again as we give in and start playing the "what if" game.
Even now as I am I writing, I feel such a hatred for the "what if" game. Asking "what if" leads to worry, and worry leads to fear. And oh, what a monster fear is! It's like inviting a burglar into your home and then sitting down to watch as he steals and breaks everything in sight. That's exactly what fear does. So how do we escape the ever tightening stranglehold of fear that threatens to choke out our hope and peace?
Well, as controversial as Jesus Christ is to some people, most would have to admit that he spoke some very profound words. Consider this statement: "These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world" John 16:33.
What was Jesus saying? Well, first of all, when Jesus looked out at the world he saw a great shadow of death that covered the land. And in this shadow a great enemy ruled his prisoners with fear. Was Jesus correct in his assessment? Just a casual glimpse of the daily headlines should give us enough reason to believe that Jesus was on to something - global warming, aids epidemic, terrorism, massive oil pollution, increasing cancer deaths, genocide, economic depression, to name only a few.
But then Jesus says something astounding: "...in me ye might have peace." He didn't say the President of the United States would give us peace, or the United Nations, or doctors, or scientists. He said we would find our peace in him. What on earth did he mean by that statement? Simply this: Jesus claimed that he could do what scientists, doctors, the United Nations, and the President of the United States are incapable of doing - bringing true and lasting peace to this ravaged world.
The greatest thing we can do for Rylee right now is to live every moment in victory from fear. This world is ruled through the tyranny of fear, and only one greater than that tyrant can set us free. Jesus Christ claimed to be that one. You might think that my words today are just the dillusional thoughts of a man that stays up way to late. But, what if Jesus was right? What if he really can give us peace?
Thursday, July 1st, 2010: Rylee was awake for about an hour on Wednesday night and she just stared in wonder at everything going on around her. The drs pulled her last chest tube out since the latest x-ray showed that the air in her chest cavity was all clear. He lungs are still very stressed and sensative and we had a minor episode when her blood test showed low oxygen count and high CO2. But they changed a few settings on her breathing machine, cleaned her lungs out again, and she popped back up pretty quick. We have a wonderful RN named Malti from Sri Lanka who has been caring for Rylee for the last four nights and she said that this "up and down" is pretty normal for babies in Rylee's condition. It is a delicate balance weaning her off of everything.
As I was watching Malti care for Rylee I began to feel an overwhelming sense of gratitude. And then I thought of this story. You may have heard it before. There was a man stuck on the roof of his house as flood waters were rising around him. A rescuer in a boat came by and told the man to jump in. The man refused and said, "God is going to save me." A few minutes later a helicopter hovered overhead and the pilot yelled down, "Grab the rope!" The man on the roof responded, "No. God is going to save me." Well, the flood waters finally swept over the man and he drowned. When he got to heaven he asked God, "Why didn't you save me?" God responded, "It's not my fault. I sent the boat and helicopter to you, but you refused to let them save you."
I think this story describes some of us very well. We are always looking for God's help in the wrong places. We don't like the fact that God very often uses other people to carry us through the most difficult of times. Sometimes the people we don't like or can't get along with are the very answer to our prayers. Think about it like this: it is a trivial thing for God to snap his fingers and make the flood waters disappear. It is much more difficult, however, to teach the human heart to "love thy neighbor as thyself."
The real miracle in all of this experience with our sick little Rylee has been that people are learning to love. People that we have never met before have been praying for us. Our church family has been fighting hard for Rylee, and our mom's and dad's have been helping so much. We've gotten cards from family members that we haven't talked to in years. People are doing our laundry, helping us financially to cover some of the big medical bills, watching our house, visiting us at the hospital, crying with us on the phone, and the list goes on and on.
This world is so full of hate and fighting, yet, for a brief moment, the clouds part, and God beckons to the angels to look down as he points at little Rylee and all of you and says, "This is what I'm looking for."
You see, God's is looking for a reflection of his love in your heart and in mine. And I am so grateful that you are reflecting some of God's love our way ;-)
Wednesday, June 30th, 2010: As I was standing in the hall outside the NICU on Tuesday afternoon, the head doctor that has been working on Rylee's case walked over to chat with me. He was very positive about the results from the x-ray. The air that was causing so much pressure buildup in her chest cavity had almost completely vanished.
I then asked him, "How did the air get out?"
"I don't have any idea. It's just gone," He answered.
Jess had popped in about a minute into the conversation and she chimed in, "I guess Rylee is a miracle baby."
The doctor answered, "Well, we can't do miracles here."
After the conversation was over, I spent the rest of the day mulling over what the doctor had said, and I finally came to the conclusion that the doctor was right: they can't do miracles. Think about it: a doctor's ability to think and solve problems - where did that ability come from? Maybe Rylee's lungs reabsorbed the air back into her chest cavity - how did her lungs know to do that? You see, the many people that still believe we evolved from monkeys have never been able to answer this one fundamental question: Where did the DNA get it's information from? It's the information in DNA that gives the doctor his intelligence and tells the lungs what their suppossed to do. Just like the computer you are using right now - how does it know to respond to your mouse clicks? Well, the computer has an operating system, or software, which is full of logic and information that tells your computer exactly what to do when you click that mouse. And, who created the software? A computer programmer, of course! So, why is it so terribly difficult for some of us to accept the same conclusion that a supremely intelligent being programmed our DNA as well?
What then is a miracle? Simply this: a miracle is something that God does no matter how spectacular or how common. If God gave the doctor his intelligence, then it's a miracle. If God designed the lung to work a certain way, then it's a miracle. If the very finger of God himself touched little Rylee's chest cavity and caused the air to simply vanish, it's a miracle. You see, we may never know exaclty what happenned to the air in Rylee's chest cavity, but it's still a miracle because God did it. He gets all the credit.
So, the doctor was right. We can't do miracles. But it sure is a good thing that God can ;-)
Tuesday, June 29th, 2010: Rylee had an x-ray done this morning and her lungs looked better than they have ever looked before! Alot of the air that was in her right chest cavity seems to have gone away and some of junk in her left lung has come up through her breathing tube. Her lungs are still far from healed, but she is finally showing a little progress. Of course, the drs always warn us that things could go back down again, but that won't stop me from thanking God for this little miracle. If Rylee's x-ray looks good on Wednesday morning we might even get to hold her for a few minutes maybe on Thursday. I have never held her yet, so this will be quite a treat. This whole experience has taught me that I need to cherish the little things in life that are often overlooked. I never thought I would say this, but I can't wait to hear her cry!
Monday, June 28th, 2010: Every time I walked down the hall today to go see Rylee in her little intensive care bed, I read these words on a poster board that was right before the scrub room: "They that wait upon the Lord shall renew their strength." Over the last four days, Rylee hasn't really been progressing. Her vitals are stable, but her lungs don't seem to be changing for the better, at least not that the drs can tell. So, we keep waiting. However, our waiting is not in vain. Waiting is truely terrible for people that don't believe there is any purpose to suffering and trials. But for those of us that recognize the divine hand at work, our waiting becomes a tremendous opportunity to grow stronger. We've all heard coaches use coined phrases like, "No pain, no gain." Well, there is some real truth to that. For example, people often pride themselves in being strong and independent. I have been this way for much of my life - a self made man. But, all of a sudden, a little pain and suffering comes along and I realize that I need other people. I need their love, I need their support. For the first time in my life I felt like I needed someone to cry with. Was I suddenly losing my strength? I don't think so. Maybe my idea of being strong was all wrong. Maybe we humans aren't designed to be islands that weather the storms of life all by ourselves. Maybe being strong means that I need you. You see, we can't learn lessons like this unless we're willing to wait out our trials and believe that the Lord has a purpose for the things we face. I can't wait to find out what my little daughter will teach me next ;-)
Saturday, June 26th, 2010: Rylee was upset at the nurse this morning for changing out her feeding tube. The poor little thing can make only a barely audible squeak when she cries becasue of the breathing tube down her throat. But, once mommy and daddy came in she calmed down and just stared at us with her dark blue eyes. Here lungs are still the same as yesterday - the right one has a lot of pressure on it from all the air in her chest cavity, and the left one is still filled with junk. But, she is still doing pretty good all things considered. Her oxygen is below 40% and they have the ventilator turned way down which means Rylee is doing some breathing on her own. Right now the Dr.'s can't do much else. I was reminded today that when we're waiting for something to happen, we can't forget to stop and enjoy the little miracles of the moment. Even though I'm waiting anxiously for the day when we can bring our little girl home, it was really nice to forget about the future for a moment and just enjoy being Rylee's daddy for a few minutes despite all the tape and tubes all over her little body. It was fun ;-)
Friday, June 25th, 2010: Today I am reminded again that Rylee is truely in the hands of her Creator. For three days now her right lung has been collapsing and her chest cavity has been filled with air. The attending Dr. shared his frustration with us today because he can't understand why she is doing so well and yet the xrays of her lungs look so poor. Jess was in tears again, mostly because it's hard to deal with uncertainty. We humans want to "know" what is going on. However, this entire experience has taught me that so much in life is very uncertain. The problem is that we humans look for stability and certainty in all the wrong places. Dr.'s are still mortals and medical theory changes every few decades. Instead, what we should be doing is focusing on the things that do not change. Ultimately, when our world is shaken there are few things that will remain. It is my determination to keep my feet on The Foundation that cannot be moved. It's not easy getting there, but when you're there, it's the best place to be.
Thursday night, June 24th, 2010: Rylee opened her eyes for the first time tonight and looked up at Daddy after he changed her diaper! Rylee is making a little progress every day. Today her right lung started collapsing again but the doctors put a new chest tube in that would help keep the air out of her chest. Her left lung is okay but filled with liquid. The RN is going to work throughout the night to clear out the fluids. Rylee is trying to breathe along with the ventilator but she is still really struggling and working hard just to get a breath in once in a while. Please keep praying that her little lungs would keep healing. She is still really sick :-(
Today - Wednesday, July 14th, 2010:
We're going home! Rylee has progressed so much better than the drs anticipated that they are discharging her at 2:00pm this Wednesday, July 14th... that's just 2 days shy of one month since she first went into the NICU at Loma Linda. Jess and I have learned so many wonderful lessons throughout this journey. And it has also been made abundantely clear to us that we have such a tremendous family of believers that have been willing to travel this journey alongside us - not physically for many, but they have traveled alongside us on their knees. Oh, what tremendous value it is to be surrounded by people that have access to the throne room of God himself! And thank you again to those who have given financially to help us cover some of our lodging, food, and medical costs throughout this time. God has supplied all our needs and we are so very grateful. We are looking forward to showing off our little Rylee Anne to you all as soon as we are able. Please enjoy the little slidshow/movie I put together. Our deepest love and gratitude to you all.