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

I heard it described by my friend Joe Hays as a rollercoaster ride… I think now we truly know what he means. Well, to some degree. Today the doctors delivered some “hard to take” news that the brain activity from the MRI, showed some acute trauma to the brain, that may have or did cause Noah’s current state. How, where why… still questions.
So today before lunch, we had the news that “this may be the best he will get.”

This afternoon, after going in to visit with my little nephew, it was evident to me, the news we received did not necessarily correspond to the things I saw. He arched his back, he would twitch every once and a while, certain sounds would come out of his mouth. Julie said at one point, a few hours ago, he held her finger when she put it in his palm. He curled his toes when they would tickle them. He flinched to the coldness of the thermometer. He made a “gagging” sound when they were sucking out saliva. And all of these “changes” occured after the doctors said there would be a zero chance of recovery.

I guess God may have a different opinion. For the prayers of the righteous are powerful and effective. We all know there is a fine line to walk from the doctors perspective, in delivering news. You dont want to be too optomistic and give false hope, but you dont want to shoot down any hope at all. Yet… somehow, you have to say what you think is going on, and what solutions or results will come from that testing. We, as believers in a God who gave his Son to die, and raised Him from the , know the impossible is possible…. with God. There is not really a “no chance” when you talk to a believer. There is always that “eternal healing” that may be the answer … but God could decide that Noah needs to be in the arms of his mother.

One of the nurse practitioners was telling Julie that in acute traumas from a lack of oxygen (which is what they are saying occured in Noah) would cause damage to the brain, but its a mystery of his situation now. Why? Because in most cases, when there is a lack of oxygen, the other organs begin to fail first. Kidneys, liver function, stomach, bowel movements, lungs, arms, and finally the brain is the last to fail. But here we have a little boy, Noah Allen Whaley, defying the norm of medicine. His body is breathing on his own. He is excreting fluids he is taking (breast milk they are giving to him via trache-tube). He reacts to certain stimuli now. The DR even tested his eye reflexing by moving an object quickly with a flick of his(Noahs) head with the movement.

No chance of recovery? No chance. Prayer is our medicine. Prayer is our source of communing with God. Prayer is there because a life was given so that we could have hope and faith in a God who loves us. I’m sorry for the quick bad news earlier today, but I reckon this may be how things go for some time.

Ethan spoke to those of us in the waiting room today, after visiting with the DR’s about the love he has for this boy of his. No matter how he is, or how he will be, right now he is proud of his son, and he loves him. It’s God’s gift to Julie and Ethan. And its evident they truly love him.

Julie expressed her respect to the neuro team for their knowledge and God given abilities, but said “my hope is in God. Something higher. Its Him I trust. It’s God.”

KEEP PRAYING. thank you friends.
steve

Just got a call from April asking me to go up to hospital now. This would be ok for me to say, since she said it. Not sure the source or the reason or what, but they have given Noah a very slim chance to recover. So just pray right now for Julie and Ethan, and all the family gathered around.
Steve

I’m wrapping up the day with a brief summary of everything I can remember, in case we left something out, or in case I just need to release it.

After Noah’s MRI, they removed the ventilator tube. The only tube he has now is a feeding tube. Now that there is no ventilator tube, Julie was able to hold him for the first time tonight. I was able to spend a few moments in the room with her and Noah, while she rocked him and talked to him. Not sure how much it helped Julie, but it sure was nice to see her arms around him. And have him wrapped up in those pink,blue delivery blankets.

There has not been any results or news from the Dr’s, which is why you haven’t heard much.
Mom just called me on their way home to share some quick updates. Which are introduced with the cautious comment of this could mean anything.

This evening while Mom and Dad (tim and donna eller) where in their with Noah, he arched his back. The nurses however were not around during this time. Julie also said tonight, when she would tickle and scratch the bottom of his feet, he would curl his toes. If those reflexes last or not, if they are real or not, I don’t mind seeing them. It does my heart good to see his body receiving the signals it needs.

The preliminary tests on the placenta and other bloodwork don’t lead the doctors to think there is an infection. But they were also unable to get any fluid during his spinal tap. Another tap may be done later, but has not been scheduled at this point.

Your prayers and love are deeply felt. God is in control. I hope today’s Day of Prayer has brought you closer to God than you were this morning.

Noah was taken down for an MRI around 1pm today. Will take a few hours to complete, and then maybe 24-48hrs for results. Julie and Ethan talked to the neuro-team, and here are some notes I took from that conversation, accurately or not, but gives a little summary.

There was an enzyme that was off the charts yesterday that has dropped 50% from what it was. It is also a normal occurance in newborns. It seems Noahs brain that supports his vital organs and other “involuntary” functions is working, ie. heart, kidney, lungs, stomach, etc… There seems to be another part that is not functioning, ie. eyes, arms, legs, pain stimuli, etc…
It could almost be related to a coma, in how he is reacting. There has not been a cause, nor a solution as of yet. Hopefully the MRI results will be able to give more conclusive results, as well as possible avenues to go down for treatments and even possible outcomes of what to expect.

Keep praying. God is still listening. Thank you
Steve