Well…mom and i were sitting at the bedside listening to Dr.Griffin tell us whats going on with Noah, and mom mentioned to him that he opened his left eye for uncle Brad last night. And the doc said, yeah he just opened it while we were talking. I guess he didnt realize how much we like to see those “little” things happening. So i sat there looking at Noah while they continued to talk, and around 11:34a (not that I was keeping track) he opened both eyes for a brief second, and then closed them. I think my heartrate jumped to about 230. It gave me a glimpse at little Noah. I take it as a good thing. Dr’s may have their take, and nurses and others… blah blah blah. But to me, it was good to see his eyes open.

Right now, they see fluid in his lungs, probably due to aspiration, as well as his bodies ability to get rid of it efficiently. They are going to give him some diuretic to help drain him out, and probably give less fluids. Julie/Ethan may want to describe more of this later… so i wont say a lot, other than pray for Noah. He’s a fighter.
uncle steve

Mom called me from waiting room just before 9am. Saying the nurse asked her to leave the room. Noah’s O2 levels had dropped to 70 and his heartrate was up to 180’s. By the time I arrived at the hospital, mom was back at this bedside. They were doing a chest xray, and had called Julie to order some tests as well as a spinal tap. Noah has a 100.7 fever, which will cause his breathing and heart rate to jump up a bit. His breathing is more labored now, and you can tell by his chest and body movements. Could be a cold, but the tests they are now running/ordering will tell for sure. The spinal would give any notice of meningitis that would not show up in his bloodwork, and of course his bloodwork(CBC)tests will show any type of infections.
Please lift up Noah’s little body in prayer before our Great Physician. Julie and Ethan were at the park with Alyssa this morning …

uncle steve

The days seem so long, but yet so short. And though the last 7 days have been the hardest of my life, I can’t believe that they have gone by so fast and my precious boy is a week old. What a week this Earth shown him.

As I sat at home, comforted by a dear, old friend of mine, we talked about the fact that we may never know in our lifetime why God sent our son to us the way he did. I questioned myself to my friend saying, “What if I had been induced 1 or 2 weeks earlier? What if he were born before this “acute trauma” had a chance to happen?” My mind was telling me that I was ready for Noah to be born. Was it a sign? She of course assures me that God’s will was done. If he was meant to be born earlier, he would have been. So we struggle with the WHY? HOW? Though I may never understand to the fullest, I have already seen the amazing things that God is doing through Noah. Those who come to the blog often have probably read many of the comments. I have probably received as many in email as well. It is just an amazing thing to see the body of Christ form around our family and around Noah. Noah is bringing hope to others, bringing prayer back, and bringing the actions of Jesus out in so many people. I had 13 emails in my inbox tonight and I did not know a single person who emailed me…. and it wasn’t spam. It was 13 people who had heard word of this from someone and wrote incredibly kind and encouraging words to someone they do not know. I truly believe that God is using Noah and, according to many of you, using us as an instrument for his will. Though we struggle, though we are sad, though we are confused, God is using our life for good. And I will echo loudly the words of my husband, “I do not like being an instrument of God’s will.” But then neither did Jesus.

The days are getting harder as we come to terms with the idea that Noah may never get better. He may never open his eyes or talk or walk, or even eat. And that is hard to think about. We have are “ups” when we are encouraged by our family and friends like you, and our “downs” when the doctors must lay out the facts for us. We try to find a place in the middle to rest. Virgil pointed out to us that we are in a state of grief. Grieving for a baby that we lost. While Noah is alive, we did lose the baby that we were expecting for 9 months. We lost all the hopes and dreams that we had for that baby. I had not thought about it that way, and it helps explain alot of the feelings we have. We still must go through the grieving process for that baby.

I have decided to spend most of Wed and Thurs with Alyssa. I know that she is missing our “old” ways, and I want to give her some reassurance that Mommy and Daddy are still here. I want to spend time with her and love and hold her the way I wish I could with Noah. It is hard to choose which child to spend the day with, but for now I think Alyssa needs it more. We will visit Noah at night once Alyssa is in bed, so please pray for strength and perserverence for the next couple of days. I think they will be long.

God bless all of you who support and love us,
Julie

I suppose I used the word interesting on purpose. As if in fear I didn’t want to believe that there could be bad news today. Truthfully, there isn’t bad news just more of the same as Noah is neurologically in the same state. The docs confirmed what we feared; that my son is making minimal progress. It is hard to take especially the problems with his suck/gag reflex. He remains hypertonic and is really having trouble breathing when he is on his back.

The good news is he may be moved from the level III NICU this week to level II. I don’t really know what this means but there will be new nurses and doctors to look after him. They will be planning and treating him for long-term care.

I have hit my finger with a hammer. Never done it twice in a row. That’s what today feels like. I cling to my favorite verse: Jeremiah 29:11 “For I know the plans I have for you,’ declares the LORD, ‘plans to prosper you and not to harm you, plans to give you hope and a future.” I really could use the hope part today.

Pray for Julie. She will be at home with Alyssa tonight and I will remain at the hospital. I love you guys and I can feel the power your prayers. – Ethan

So now that we posted some good news, the car hits the top of the hill, and starts back down for our next turn.
Went to see Noah at lunch, and the Dr’s had stopped by(Neuro). They were not looking at his level of reflexes or coughs, or twitches, but his brain patterns and other signs such as gagging reflex and sucking. These have not changed. And since they haven’t, they seem less hopeful the longer he stays “stable” or constant.

So, therefore, as it says in scripture, pray continually.
-steve

Today Noah is 1 week old. Yet it seems like its been 2months. I just talked to mom, and thought I’d send out a little update on how Noah is doing today. Julie and Ethan, who will probably post with more detail, went up to hospital this morning, to meet and work with the PT(physical therapist). While doing some leg movements Noah let out a big cough. Something he has not done before. Also, he has had hiccups, like most little ones do, but today the hiccups started coming out with some sound to them.(last week it has only been his chest moving up and down.)

I’m heading up to see my little nephew during lunch. Thank you for your prayers, and ENCOURAGING comments. Sometimes its hard to know what to say, or how to say it, or how to share your concern or worries. I heard it said once, or maybe many times, that maybe its best to just say “I wish I could say something….” and leave it to God to show the arms of your concern. But then again, our best example of how to show our love can be seen from our best Friend, Jesus in John 11:35.

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.