Julie forgot something in the car when we arrived at the hospital this morning. So I walked back down to the car to retrieve it. When the parking garage elevator doors opened I looked toward the back of the elevator and there was basically a fun house mirror on the back wall. I don’t know if it was intentional but it contorted my head and body into a twisted form. As I looked at myself in the mirror I thought that it was somehow appropriate because that was how I was feeling. Strange how something as simple as glass and reflective film could so accurately project my feelings onto my physical form. Maybe just a silly story but an interesting start to the day.

I did have a surprise this morning as my friend from college showed up unannounced. He is a wonderful person with deep faith and love of the Lord. But the best thing about him is ability to make almost anyone relax and laugh. Man it felt good to laugh with him this morning. May be the best medicine I have had in days. Thanks B I needed it.

Also had another friend show up this afternoon. This one was from work and I must have talked his ear off. He put me at ease about alot of things concerning work. It is nice to see to the wonderful people from Schlumberger step up again to help my family.

But the best news of the day was to walk into the NICU and see my son wearing a hat and shirt. Looked like a little boy laying there. It wasn’t a baseball cap or a Chelsea jersey but I’ll take it. The physical therapists started their work today to “teach” Noah how to do things. Right now we need his suck/gag reflex to come back so that he can safely breathe. This a big concern for the doctor as it determines alot of his future abilities. Joe’s entry today about Ira explains alot of why this is important. I hope Joe doesn’t mind me stealing his work. Noah’s temperature and heart rate were high today but seemed to come back down by late tonight. Not sure what it means but I want to check with doctor tomorrow.

Read a passage from Ephesians today that I liked. Chapter 2 verse 10 says “For we are God’s workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.” I like to think that Noah was created by God’s workmanship, he is capable of good works, and God knew before Noah arrived that he could use him. And I can see that even now. I have seen the story of my little boy who can barely lift his own hand stir the body of Christ into action, move people to prayer and spread the Gospel of Jesus Christ around the world. What an awesome God we serve.

That’s all for tonight, but we may have some interesting news tomorrow after we talk to a neurologist. – Ethan

Julie and I slept alot today. Alyssa wasn’t the only one napping at the house. I guess the hardships of this week had finally caught up with us. It makes me think of something else that needs prayers. Julie and I are still the parents to a wonderful two year old girl. Pray that Julie and I continue to be good parents to her and that we remember how much she needs her normal routine. I understand that the definition of normal has changed dramtically for many of us, but for her I want the changes to be slower in coming. During many of the last few dark days she has been a light for Julie and me.

Alyssa went to see her little brother today. She excitedly sat in the recliner and held him. She kissed and patted his little head. She actually was interested for alot longer than I expected. It made me feel good to see them both together.

I didn’t see any improvements in Noah’s physical abilities today. There is some good news to report though. He has moved from a warming bed to a crib. This means he is able to maintain his own temperature and it also means I don’t have to sweat when I stand over his bed. He is taking food through his feeding tube and is able to digest it without problems. He is gaining weight and now weighs 7.025 pounds. For you scoring at home he is over his birth weight.

I would guess that some of you are wondering why Julie and I have decided to write these kind of updates on the blog. I know for me this is one place where I can capture the many, many thoughts that go through my head everyday. It also gives me the visible love and affirmation from the body of Christ that lifts my spirits. So I promise to keep sharing if you do.

Read the story of the Shunammite’s Son from 2 Kings 4 starting in verse 8. I like how it ends, but I must admit that I echo her fear and I pray for her faith. – Ethan

It is Mother’s Day, and it is off to a sad start. Ethan and I agreed that this was not going to be a day of celebration, and therefore I am not disappointed in that sense. But today has been very hard and it is only noon. I can’t even figure out what is different. Maybe it is that the stress and sadness of the past 5 days are finally catching up with me. Ethan and I have both found ourselves very … well, depressed I think is the word. I can easily say that I have never experienced this feeling. My life thus far has been very easy, very blessed by my Lord. But I now face something bigger and scarier than I am ready for. I know that my Lord is next to me every minute. I know that not because I can feel it, but because I just know. And I guess that gives me a little strength, but not really. I know that I have probably thousands of people offering prayers on our behalf, and family and friends to lean on, but that does not really give me strength at this point. And though my sweet Alyssa can still make me smile and even laugh, I find no strength in her. Someone, please tell me where do I get it? What do I do to keep my self from such negativity? Feelings of just wanting to run away. Feelings of anger, needing to blame someone.

This morning as I lay in bed with Alyssa, Daddy comes in crying. She looks at me and says, “What Daddy doing?” I tell her that Daddy is sad, that he is crying. We want to bring Noah home. And she understood. She gave her Daddy a kiss and said, “It’s alright Daddy.” Later in the morning, I am still in bed, Alyssa comes in and sees me crying, “What you doing?” I said Mommy is sad. Alyssa tells me, “I feeling sad, Noah come home, I feel better.” It only made me smile. Such a sweet and precious girl we have. Alot of my heart aches for her. We talked so much of Noah in the months before so she would be ready to be a big sister. And now, what do I have to give her? We are taking her up today to see him. And I hope that she will hold him.

Ethan and I pray for a miracle for our Noah several times a day. But I am wondering what should I be praying for? We were both very sad as we spent time with him last night. Sadened because we saw no change. Am I putting too much pressure on God to give me what I want? Am I being selfish? The more I put my trust in him, it seems the more I am let down when he is “the same”. Noah is moving much better than in the days before. He will arch is back, raise his arms and legs, squeeze your finger. He also started responding to pain, when you pinch his toes or when the nurse has to suction him out. Which are all great things. I guess I just need patience and to wait on God’s timing for our son. But I look around the house, and everything is a reminder of what we do not have. And I am really struggling with that.

The hardest thing is to not look to the future. Not look at where we may be in 6 months if he stays in the state he is in. The doctor is waiting to see if Noah rebuilds his suck and gag reflex so that he may eat. If he does not, he will have to be fed with a tube for the rest of his life. So you think, how do you do that with a 2 year old? How will I be able to go to the store with a baby like this? What about when he is 20? Those thoughts really get me down. So for now, I struggle to take each day as it comes. To deal with today, for tomorrow has enough worries of its own.

For the first time since Noah’s birth I find myself alone, all alone, in the hospital. No family in the wating room, nobody I know just down the hall. Julie and April are in NICU with Noah and I have wandered down the hall to avoid the drone of the TV. A strange feeling sitting in “unfamiliar” surroundings trying to make sense of the conflicting thoughts and emotions running through my mind. It was easier last night sitting in familiarity of my living room and the comfort of my couch.

Today was a good and bad day. I suppose that’s what they have all been and that’s what most will be for the foreseeable future. But it sure isn’t fun. This morning I was able to hold my nephew for the first time since he was couple of days old. It is amazing how fast he is growing and awesome to see him smile. It was the first time Alyssa was able to meet her cousin and I couldn’t help thinking this is what it was supposed to be like. Noah on my lap and Alyssa sitting next to me beaming with pride over her baby brother. In so many ways it was good to hold Clive and see him and to know that God has blessed my brother. Alyssa really liked him.

Today was also the first day that Julie and I weren’t waiting on the results of a test. As strange as it may sound the tests give us something to look towards. Good news or bad news the tests give us point of reference in the day. For two planners and dreamers like us the lack of paitience about the future is probably the hardest daily battle. Joe in class on Sunday has told us several times that money is mentioned more times than prayer, love and Heaven combined. What I am wondering is how many times patience is mentioned? Wouldn’t so many things like love, prayer, money and Heaven be easier to grasp if I just had more paitience. The problem is I want my son better now. My prayer is that the Father give me the paitience to know that this is the day the Lord has made, rejoice and be glad in it.

It’s hard to think it, let alone write it, but I am not sure I noticed any improvements in Noah today. It makes my heart heavy to think that. I suppose it is also worth noting that there weren’t any setbacks or bad test results. There many things that Noah needs prayer for that only our glorious God knows about. Please continue to petition the Lord on my son’s behalf.

So many thoughts but so little time. To all the moms out there including my wife: Happy Mother’s Day. – Ethan

P.S. The lasagna and cake were really good.

As far as I know right now, Julie and Ethan are wanting to take Alyssa up to visit her brother tomorrow from 12-6pm. During that time, they are requesting no visitors. As for times other than that, I am unsure of the details. Thank you for your continued support and prayers to the Whaley family.

I am not sure why I am awake, again, at this hour. But here I am. Ethan and I are overwhelmed by the number of comments and emails we have received. The news of our Noah has literally spread around the country in days. From best friends to high school friends we have not heard from in 10 years. We are blessed by the body of Christ that surrounds us. Thank you for all your prayers, I know they are working.

Steve did not mention our miracle-prayer today. After receiving devastating news that Noah was not likely to be anything other than what he shows us today, which is a beautiful baby in a “vegetable-like” state, we were immediately surrounded by family and friends at the hospital. We talked and cried and eventually were led in a prayer by Hal. A beautiful site to see. A group of 20 or more in a circle in the middle of the waiting room. We lifted Noah up to God and asked for a miracle. Immediately after those words, the waiting room phone rang. We did not answer, but know that it was a call from God saying, I hear you and I will show you what I can do. After that prayer, we returned back to be with Noah and his condition had improved. He arches is back, deliberately moves his arms and legs, grasps your finger slightly, has a little eye movement and a slight suck reflex. At first his neonatal doctor said, “Good”. But did not sound like he really believed me. Later that day, as nurses and doctors saw these movements, they were more and more amazed. Ethan had asked them if they had an explanation for these small miracles, and I immediately spoke up “GOD”. What does this mean for Noah? We do not know. I truly believe it is God’s way of showing me that He is still in control, and He can answer our cry for a miracle. I went home with a little hope tonight.

I would also like to note some thoughts from a friend of my brother, who is going through something similar with her precious baby:
I put mascara on today. I think it was my way of saying that today was going to be a good day; that I wasn’t going to cry to the point that it would all run down my face. It’s the end of the day and I still have it on. I guess its been a “good” day, for me anyway.
I walked with Sophia to the park this afternoon and all I could think about was that I should have two kids with me now. There is a certain void everywhere I go that will only be filled when and if Ira comes home. I was telling Joe a couple days ago how weird it is to go from being pregnant to not. To go from everyone staring at me (I was just so big) and giving me their seats on the subway (most of the time) to becoming just another face in the crowd. Usually new moms have their baby in tow like a trophy they can show off to those around them of what they’ve been through. I have nothing. I walk around knowing I had a baby two weeks ago but nobody else knows. It makes me wonder what burdens those around me are secretly carrying in their heart that nobody knows about.
Ira is so beautiful. I love the smell of his skin. I love to stroke his black hair. I love to kiss his cheek and let his little fingers wrap around my one. I long for the day when I will get to hold him, when my touch won’t cause him to de-sat (de-sat = fits = plummeting stats). I wait for the time when his cry will no longer be silenced by tubes but will be heard by everyone around.

My thoughts to Laura are as follows:
Laura, I had been keeping up with Ira and the struggles in his life on a daily basis. Sometimes checking the blog several times a day, just waiting for an update. I did that until this past Tuesday when my precious Noah was born. Since that moment, we have joined your aching hearts on a roller-coaster ride with his life. The main difference between us is that we assumed we would give birth to a healthy boy and bring him home days later to meet his big sister (2). There is also a difference in our babies health, but there are so many similarities in the things that really matter. I read your notes tonight and after a “terrible” turned into “hopeful” day, I begin to cry again. EVERYTHING you wrote, I feel too. I look around my house and see what was supposed to be. I see his bed next to mine, that I imagined pulling him out of every few hours to feed. Then I see the pump, that now takes the place of his beautiful, soft lips. I see his toys, that his sister wants him to play with. The double stroller that was supposed to take us around the block together. I long for the days when he was tucked safe inside me, though now I even wonder when that was. I too, love his smell, his skin, rubbing his dark hair. I am amazed by the responses we receive from our blog, our church, our friends. But it does not replace the feelings I have to want to open my eyes and this to be just a dream. To just say, “ok, God…. now” and look to see if his eyes are open. I am there with you Laura, and I will pray for you everything I pray for myself.

– Julie

Ever had a long, exhausting week? One where when you get home on Friday you just want to sit down on the couch and crash. Yeah me too. And strangely enough I find both me and my wife sitting in front of our computers at midnight on the longest, hardest week of our lives. I guess all the excitement, fear or just being worked up keeps me from sleep, but I know that I am tired. Keep the prayers for strength coming because I need them.

This morning was like somebody kicked me in the gut and knocked the air out of me. I sat there gasping for air so scared I would never be able to breath again. It’s that moment where your brain tells you something is seriously wrong all set in motion by words from a man’s mouth. I know that God’s presence is the only way I was able to look at the woman I adore and tell her it will be okay.

Did I know that? No way. I still don’t know. But here is what I do know; I am a father to a son and he is wonderful. I know that I live within the providence of my Father God and Noah was entrusted to Julie and me. I am humbled by God’s goodness to me.

My little boy still has many obstacles to overcome and he needs many miracles from God to be made well. I boldly ask God to heal my son if it his will. I trust God to know what is best for Noah, for my family and for my future. In the meantime I look forward to singing songs, reading books and telling my son about the wonderful love of Jesus Christ.

I want everyone to know that Julie and I are truly blessed by your love and compassion on our behalf. I might have never made it to my couch this week if not for your prayers and your petition before God. I stand in awe of the God of Wonders and patiently wait to watch my son get better through the power your of prayer. – Ethan

I love my brother-in-law Steve. How many people have you met that have Steve’s heart and passion for our Savior? I love his boundless love for me and Julie. Steve started this blog to relieve the burden on Julie and me and I can’t thank him enough. I also know that Steve is passionately praying for my son and another beautiful boy, Ira Hays. Steve keep up the good work and everybody keep checking back here for the latest news. – Ethan

Julie and Ethan have gone home to be with Alyssa this evening. There are still a few families members at the hospital this evening if you wish to stop by. Thank you.. steve