Today was quite a big day. We have finally moved out of the ICU. Since Noah is on a trach and now finally off all narcotics, they moved us up to the 3rd floor. We feel good about this progress as the dr's here are used to dealing with more critical care (long-term) patients. The ICU staff didn't really know what to do with us since their patients typically only stay about 3 or 4 days.

His new attending dr's will be pulmonary, so we're hoping they will able to evaluate his respiratory status more thoroughly and give us a care plan. I guess we're one step close to getting our little guy home.

Even though there has been a lot of change, which is always a bit tough, we can use our cell phones in the room, eat in the room, not have to deal with shift change (room location) - what simple pleasures.

The new phone number for the 3rd floor is 303-861-6516. Please feel free to call us here.

It is humbling to know that you are all praying for Noah - all I can say is thank you for holding up my son, my wife, my daughter, my family.

Jason

Much anticipated pics...
Sorry for the delay in communications. I have committed to pray and read God's Word this week so my roots can go deeper and so my heart is pure before Him.

Here is Noah tonight sleeping away. His swelling is going down but in the next pic you'll see the BIG cheeks...
He's learning to suck again, so he either works on the pacifier or on my pinkies.

This is him out like a light.
I had to sneak the pacifier out of his mouth to get the shot, but he's in REM, so he didn't mind. They are weening him from the Versed, a "memory narcotic". He's been on it over a month now, so we are grateful we'll get to see our real man of God soon. The nutritionist has slowly changed his feedings to bolus feedings so his tummy can get used to food again. He'll have his trache changed on Wednesday morning and we'll likely move to the recovery floor later in the week. He's so stinking CUTE! I even jumped in his crib! One of the nurses said they've had "bigger" mom's do it, so, I climbed right in and spooned my boy!

People, I have to tell you, had Noah come home from the hospital post delivery and life had carried on without hiccups, I can honestly say, I would not have pursued God as passionately as I am now. I'm sorry Noah is in the PICU, but I am grateful to God for His graciousness to our family to love us so much to turn this around for His glory. Sickness is not from God. If you question that, look in His Word for yourself. Yes, I would have read him the Bible and prayed over him, but I would not have realized the magnitude of what is really going on here...God is calling a righteous generation to anticipate His return...Are we ready and ANTICIPATING Him or are we actually content with life on earth? Had things been "smooth" I know that my lamp would not have had oil in it (Matthew 25). I am humbled. Pray not only for Noah's healing to be manifested but his generation and for your own, whichever you represent because we were not created to live on earth without being in God's presence. God wants to be reunited with His creation. If you fear His return, ask God to bless you with His love because it is perfect and it casts out all fear. This week I am praying for all of us to be moved by God's Spirit in prayer. I can't wait to see how He leads!

*signing out...all updates this week from Noah's daddy, my wonderful husband, a man after God's own heart... 

Noah is out of surgery and sleeping now in his room. He's doing good. We still can't hear him cry because of swelling from normal surgery. He's been "fasting" all day because he needed an empty stomach for the g-tube. His face is swollen from all the adhesives...they tape their eyes shut so their corneas don't dry out during procedures...well, Noah is sensitive to adhesives, so he's extra pink and extra puffy right now. *Parental creative suggestion: place cotton balls over eyelids prior to tape placement!!!

Since he grew over the last month while "tubed" his cheeks grew on either side of the tape, so there's a horizontal dent under his nose from cheek to cheek! It just takes a little time for the swelling to go down.

The docs took a muscle biopsy and sent it to pathology right away. The metabolic geneticist will meet with us on Monday after he reviews any findings from the skin and muscle biopsies. Also, the audiologist came in while Noah was still sedated and did her testing. She'll review that and get back to us next week.

I'm going home to have a slumber party with Em and the boys will hang here tonight. THANK YOU ALL FOR YOUR PRAYERS AND SUPPORT! God is good!

Noah's surgery is today at 2PM Mountain Time.....PLEASE PRAY as the Holy Spirit leads you. Thanks!

Holy Smokes, what a day!
It's late, so I'll make this as short as possible for my own sanity...Noah's PIC line had a bacteria, so they pulled that out today. I found out that in the NICU, when an infant has a PIC line put in, the protocol is a routine dose of Nystatin, an anti-fungal, until the PIC line is pulled out. Noah has had a PIC line in for 7 weeks...last night was the first time he was given Nystatin (You do the math).

Because they pulled the PIC line, they had to put in an IV line somewhere else. After poking his right wrist, right foot, left wrist, and left foot, there is now a line in his HEAD. NICU came to put it in because babies have great veins in their heads.

Risk Management got involved in Noah's case today...just because we want stool, urine, and 3ml of his blood for our own tests, with a reputable lab. I won't go into details because my heart is not to get everyone else worked up, but just to inform so everyone knows how to pray...

We had a good talk with our favorite Attending today, expressing our feelings, concerns, opinions, and sentiments. Sorry, again, no details, just know that your prayers are coveted for Noah.

You may all be tired of living vicariously in the PICU for 8 weeks now, especially being frustrated not having answers and knowing that the docs here aren't searching for any more. Please don't grow weary in well doing. Keep praying. Jason and I do not feel like 8 weeks is anything in the scope of life on earth and have not felt released in anyway from this scenario. Thank you for walking this journey with us and bearing this load. We could not do this without all of you, wherever you are!

Today I was feeling strongly for men to be praying for Noah. My dear friend who brought dinner to us tonight told me that her husband has been praying for Noah since he was in my womb and that he prays for Noah every day. I have never even met her husband! It was so encouraging to know that what I was feeling in my heart, God was already laying on the hearts of praying men.

Okay, bed time. I'll check in tomorrow. Have a blessed night! Peace!

Pray! Pray! Pray!
So much is going on right now. Noah's blood, urine and snot are growing things due to the fever and an infection. He is on another round of antibiotics (3rd in 4 weeks) but the ND said that if it's a fungus, of course antibiotics won't work. Each time he gets over a pneumonia, he gets it again...His fever is lowered again, but his hematicrit was down to 24. He'll likely need a transfusion but we are having a blood draw done prior to that. Also, today I got the lab kits for Noah's stool to be sent to a lab for fungus testing. We're just waiting for him to poop! The surgery is scheduled for tomorrow at 2pm but I am pretty worked up about some things and Jason and I are wondering if we should have a care conference first. Tomorrow morning the ENT surgeons will determine whether Noah should have surgery while he's on his new round of antibiotics.

Right now neurology is doing the auditory evoked response test. Noah looks like he's listening to tunes with big headphones.

Today while I was driving from the ND's office back toward our house I saw Mr. Blessitt walking up the street carrying the cross. I stopped and we talked a bit then we prayed. Then he asked me if I wanted him to come pray for Noah again and I said yes, that I'd prayed that if he wanted to, it would be on his own accord. He said that as he was carrying the cross this morning, he was praying specifically for Noah. So, he said he'd be over again soon to pray for Noah.

Please pray for me as I have seen a lot of hospital politics over the last two months and I am growing weary of it. I don't like politics ANYWHERE, so I most certainly don't like them when they affect my son's health.

Thank you for your prayers for all of us. Jason and I are doing great as a couple, so Praise GOD for that! We are having great times with Em, though they are sporadic, but they are quality! We are so blessed to have such wonderful family and friends supporting us in prayer, even friends we have yet to meet...

I pray that God would bless all of you beyond your own comprehension...He's like that, you know...God works outside the box, He's not in the shipping business, so don't box Him in in your life...Let Him BE in your life. I'll keep you posted...

Good morning people around God's green earth! Early this morning Noah came down with a fever. He is scheduled for his surgery tomorrow and if the fever indicates another pneumonia, he'll have to be put back on antibiotics, therefore won't be able to have the surgery...please pray that God would reveal each day one day at a time as He has been doing. We trust Him with our son. We are grateful for the opportunity to be praying with thousands around the globe, not only for our son, but praying in general.

The test kits for the further testing we want done should be here soon so we can send those off. I don't know how long all of those tests take, but we'll wait patiently.

My mom and older sister, Ashley, will be here soon to babysit so I can go home for a shower. It's been 3 or 4 days, maybe? For this one reason, I am glad you aren't too close! Just kidding! I'll be returning before lunch to meet with an ND who is going to do a work up on Noah Steven. You can see their site at www.denvernaturopathic.com Cool story: these ND's were recommended to us by two totally neutral sources on the same day, unbeknownst to them. Until later...

Here is a list of Noah's symptoms so that if anyone wants to forward them on to a specialist, it is available, or if you refer someone to his blog they can easily access this list. If someone is interested in Noah's case from a medical perspective, you are more than welcome to contact me through the blog with your contact information. Thanks!

*2 weeks: horizontal nystagmus, not constant, sometimes when focusing to the side
*4 weeks: presents with a rash, much like a heat rash all over body
*5 weeks: dark green diarrhea with mucus (this he had for 2 weeks prior to admittance to hospital 8/2, then continued a degree of diarrhea until 8/23 when he was taken completely off breast milk, given flagyl (an antibiotic for c-diff for which he tested negative) and cefuroxime for pneumonia, and put on the respirator for left lung collapse
*Increased overall hypotonia, he did have the archer’s response/reflex, had general reflexes, but those have decreased
*MRI 8/3 shows peripheral demylination in white matter
*8/3 starts transpyloric feeds; combo breast milk with Nutramigen
*8/4 stool sent to CDC to test for botulism
*8/7 PICU admit; begins c-pap O2; feeds 30ml/hr Nutramigen alternating 20/10ml ratio formula to breast milk due to decreased supply; diarrhea still present
*Lab tests: amino acids normal; long chain fatty acids normal, carbs all normal
*8/20-8/23: nurses increased breast milk one 60ml/2hr syringe formula to 60ml/2h syringe of breast milk
*Between 8/7 and 8/22 CO2 levels continue to creep upward as well as Ph acidity
*8/22: Noah’s left lung collapses sometime that evening/overnight
*8/23: Noah placed in an iron lung along with c-pap: does not reinflate
*8/24: Noah’s stool samples return from CDC…lab mice ALL died from Noah’s stool, even ones given anti-botulism antidote; Noah taken off mother’s breast milk at mother’s request; diarrhea ceases with heavy antibiotics
*8/25: Noah put on flagyl and cefuroxime antibiotics for pneumonia and possible c-diff (sp?)…CDC still doesn’t know WHAT killed the lab mice
*8/25-8/26: Second stool sent to CDC for testing; also urine sample taken for heavy metal toxins (came back negative)
*8/28: Breast milk sample sent to Mayo and CDC for testing: heavy metals, toxins, etc. (came back negative, though were testing ingredients from natural supplements for which they don’t have normal levels which to compare…)
*CDC confirms the bacteria that killed all the mice was not the botulin strain, BUT THEY STILL DON’T KNOW WHAT IT WAS/IS!!!!!!!!!!!!!!!!!!
*He’s had EEG’s (these were normal), nerve conduction, muscle evoked response (these two showed delayed responses), healthy spinal tap, healthy x-rays

*Removed from Flagyl because docs said it wasn't C-Diff, so not necessary.
*Tested for SMA, negative…
*9/13: evoked auditory response test normal

*9/17: EKG performed due to lowered heart rate-normal

*9/19: barium pre-op procedure to check stomach anatomy - normal

*9/21: TENTATIVE TRACHEOSTOMY/G-TUBE PLACEMENT/MUSCLE BIOPSY/SKIN BIOPSY surgery scheduled (time not confirmed from docs yet)

The main prognosis were: metachromatic leukodystrophy, Pelizaeus Merzbacher Disease and Like-Syndrome, they even sequenced his genes specific to these in Delaware, but they came back normal…They had actually banked most of their money on the PMD and Like…


I’ve probably missed a lot…basically the docs don’t know why Noah is hypotonic, why he has nystagmus, and why he’s in respiratory failure. I’m wondering if there’s something SIMPLE that they are missing…
His main docs are a geneticist (David Manchester), a metabolic geneticist (Johan Von Hoven), and a neurologist (Dr. Moe)

On September 19th at 9:30 am, Noah will be going in for a pre-op procedure to check his stomach anatomy. He'll have an upper GI done to see if he has reflux and to see the exact location they'll use for the "mickey button".

For the last couple of days his heart rate has been lower than usual, not constantly, but off and on. They've done two EKG's and they look normal. It's usually when he's drifting in and out of naps during the day or early evening. Anyway, they said it looks okay and they aren't worried about it. Thanks for your prayers for his procedure tomorrow and for his heart, even though they don't think anything is wrong.

He's snuggled down for the night. Em got to "nuggle" him tonight, so that was a sweet time for the two if them. She loves him so much and misses him. She knows he's having surgery on Thursday so prayed that it wouldn't hurt. She was glad to know we'll be able to hold him soon. She's really excited because her Auntie Ashes from Rhode Island is coming to play for a week.

Noah's tracheostomy and g-tube surgery are tentatively scheduled for this Thursday. While I was walking in the stairwell this morning I ran into the NP from neurology who admitted Noah on 8/2. She was with one of the neurologists that has looked at Noah's case. I stopped them and said hello and they asked about Noah. I told them about his upcoming surgery and they said that they could actually take a muscle and skin biopsy at that time because they can use stomach muscle for their tests. SO, that'll be good to coordinate that at the same time. ALSO, neurology has been wanting to do a hearing test on Noah for a while now but they need to perform it while he is asleep. They've wanted to sedate him but we don't want unnecessary sedation, SO, they are trying to coordinate the hearing test while he is under anesthesia on Thursday. Maybe this is why the surgery didn't work out last week...so all these other things could be coordinated.

Today Noah's nurse printed out his labs so we could give that information to the natural docs we are working with. IT WAS 150 PAGES LONG!!!! They are lining up their tests so they know exactly how much blood/urine/stool they need so they don't have to provoke him more and more. It is probable he'll need another transfusion, but the PICU docs took so much blood for their tests and to no avail. Jason and I feel like we haven't exhausted our resources and connections, therefore we'll have further testing done.

Thanks for your continued prayers and support. We'll keep you posted.

Has anyone seen Bono?
Have you ever gotten sick of hearing the same song over and over again? If so, it obviously wasn't a u2 song...

This is a pic of Em two years ago when u2 came to town to do the Vertigo tour and ended up doing two nights. We took Em downtown to look for "the boys" and she kept asking, "Where's Bono?" Pretty cute, huh? Anyway, Dana got front and center, as you all saw the picture from a previous post. We were bummed because for Elevation we were on the floor in Chicago but we had balcony seats for this one. As we were walking into the concert, some guy handed us two floor tickets for FREE! It was a great show, as always. ANYWAY...

Noah and I have been listening to u2 all day...specifically "How to Dismantle an Atomic Bomb". As a kid I loved wearing my dad's HUGE headphones, putting on a record, usually Fleetwood Mac, The Eagles or Elton John and learning the lyrics. To think that Em and Noah are growing up listening to our favorites...If you aren't a fan or once were and have drifted, listen intently to the lyrics. Please don't think I'm obsessed, by any means, I just love that they know where their gift is from and they use their celebrity for a greater cause. Check out the ONE Campaign...

My first concert was at Compton Terrace, an outdoor venue south of Phoenix, with my best mate, Stacey. It was "The Unforgettable Fire" tour and my dad was pretty nervous to let me go, since I was in 7th grade! We went with chaperones and it was amazing! We encored "Pride" 4 times! A memory to go down in history. Anyway, I've been a fan ever since.

So, I am feeling an overwhelming sense that we have worn out our welcome in the PICU. I know that sounds strange, and please know it's not from the nurses. Nurses truly have a nurturing gift. It comes from the docs, in not so many words, but since they all have their opinion which is that Noah has a progressive disease, they've done all they can. I also don't get the sense that they respect our decision to have Noah undergo a tracheostomy. They can't say that, but anyone who knows me, knows that I often know deeply about others' hearts and intentions...

The statement the PICU attending made about anyone coming in was somewhat retracted...he came in and clarified with a cya statement about paper work and legal stuff. Understood. Regarding Noah having some acupuncture, the doc said he'd be okay with that even though he still has his opinion and as long as it didn't hurt Noah...IRONY here, folks!!! They want a brain biopsy along with a muscle biopsy (even though they said those two things wouldn't tell them anything they think they already know), but he's concerned about acupuncture! Hello!? If they don't think anything can help Noah, as long as we are desiring this therapy for Noah, what do they care? Anyway...

Today my gramma died in California. She was 92. She had had dementia for several years. But instead of telling you how she died, let me tell you how she lived...She lived tenderly. She ADORED her husband, my gramps that used to sing "BabyFace" and play "Flight of the Bumblebee" on his violin. She called him "Nicky". When he died, I know part of her went with him...She loved her 2 children that lived and the many that died...she loved her 5 grandchildren and her great-grandson (she really only knew one because she had never met Em or Noah). She made the best chocolate chip cookies and cherries jubilee. She collected seashells and appreciated the small beauties in life, like love and family. She had fun jewelry that I would dress up in whenever I went to her house. All these are fond memories, but what I admired most about my gramma was her love for God. She treasured His word and knew SO deep in her heart that Jesus Christ had died for her. She did not take that for granted, she knew it was a gracious gift...

Anyway, think about why you love the people you love. Think about their qualities, even the ones that make you crazy sometimes. God has woven all of our lives together for a purpose...don't get stuck in a rut (a grave without ends) because you don't see eye to eye on everything. Honor them, tell them you love them. Jason and I can never say we love each other enough because if those are the last words, they are powerful ones. I loved my gramma. I pray that in the years that she did know me, she always knew that. I knew she loved me...

Em and Noah "nuggling"
We've been giving Em a boost up onto Noah's bed so they can have some skin to skin contact. She hasn't gotten to hold him in about a month now, so it's been hard on her.

Regarding the tracheostomy...the surgeons weren't able to schedule it along with the "mickey button" today so it's tentatively scheduled for next Thursday. Noah's left lung collapsed again today, so it was good that the surgery didn't take place. The RT's continue to do chest pounding, now with a puff of abuterol to open up his bronchials. Jason and I prayed last night that if the surgery wasn't supposed to take place today it wouldn't, so this a.m. when the x-ray showed the white out again and the surgeon's couldn't coordinate their schedules, we had a peace about it. We know the trach will help, along with the "mickey" button, but for some reason, God didn't open that door today.

Our friend, Dr. Julie, will be doing a consult on him...we've asked her to do some acupuncture on Noah to help stimulate his nerves and muscles. She's the one who introduced me to Mr. Blessitt. Anyway, for seven years I would wake up EVERY night from 2a.m. to 4a.m. with a lot of back and abdominal pain. Doc Julie is the one who helped me sleep again and have zero back pain.

We continue to pray for direction and wisdom during this time. Noah is one amazing kid...we are so blessed to have him and his big sis in our lives!
Thanks for your prayers! 

Today my dad was driving to Home Depot for a "part" and saw a man carrying a cross down the street...he stopped and asked him if he was Arthur Blessitt, he said "yes", of course and my dad said, "I'm Noah's grampa". So, the two of them had a nice talk in the car and prayed together for Noah.

Well, I'm on my way home to "camp" with Em. Jason and Noah will hang here tonight. Tomorrow the ENT's have an opening for surgery to do the tracheostomy...Jason and I spent some time in prayer about this and have not drawn a conclusion...otherwise the next opening is in another week. There are pros and cons, pros being we could hold him, he'd be off his meds, we'd be one step closer to being able to move to the recovery floor and eventually home. Cons being that this is surreal and we can't believe we are making this decision...we are leaning toward it since Noah can't be on the tube forever because of an increased risk of infection. Please pray that God would give us wisdom and that this would be in His hands. We trust Him with our kids' lives along with our own...

I hope to encourage you...
This past weekend I was reading about Elijah and Elisha in the Bible regarding the widow at Zarephath and the Shunnemite woman, respectively. I asked God if there were still men of God on the earth like these, men with God's hand upon their lives in a mighty way, but also humble men that weren't flashy, showy, seeking fame and fortune. I left it at that...a simple question, not really expecting an answer. Well, Monday night, after the meeting with the docs, we were treated to dinner by our dear friends from SD and afterwards headed back to Noah's room. On the way I called my friend who is also my chiropractor, but had to leave a message. She called me back at 10:40 pm and said that she had told a client of hers about Noah that day. She hadn't seen this guy in a while but he came in for a "tune up". She told me his name but I hadn't heard of him. Apparently he has been carrying a cross around the world since 1969. He gave her his phone number to give to me and said that he would be happy to come pray for Noah. I said thanks, didn't know what to expect and went to bed. Tuesday morning I called and left a message for this man, Arthur Blessitt, on his voice mail, telling him of our location, our phone number and saying he could visit if he wanted to...

Well, I was on the phone when the PICU secretary came in and said that an Arthur Blessitt was on the phone, on his way over to Noah's room and wondering if that was okay. I said sure, still not knowing this man since the only guy I had ever heard of that carries a cross is Keith Wheeler. Well, they let me know that Mr. Blessitt was out in the hall so I went out there but I had never seen him, so I didn't know which man in the hallway was him. Then, I just knew in my heart that it was this older gentleman with jeans and a jacket on. I still didn't know what to expect, if he was going to be a "yeller" and if there was going to be a big "to do" or "coo" in the PICU. People, let me tell you, this was the most humble man I have ever met...he came into the PICU, suited up in the yellow droplet precaution outfit, asked me about Noah, and then said on his own accord, "I just want you to know that I don't shout or yell, I just pray quietly as God hears my heart." He proceeded to pray for Noah and for me. It was a sweet time of prayer and humbling being with a man so in love with God that I later found out has walked over 37,000 miles around the world sharing God's love with people. He has walked those miles carrying a cross, while at the same time defying doctors reports that he shouldn't due to numerous brain aneurysms.

God really encouraged me with the visit of Mr. Blessitt in many ways. No, I didn't expect that Noah would be instantaneously healed, although I know that can happen. God showed me that there are men of God, like those in the OT, still roaming the earth, not seeking fame or fortune. He especially showed me this because I hadn't personally heard of Arthur Blessitt, to my embarrassment. Had some big name preacher/personality come that I had heard of, I wouldn't have gotten God's message as clearly, does that make sense??? When my mom came in the room and overheard me telling my friend Nanc' about the visit, she couldn't believe it! She couldn't believe Mr. Blessitt had come to visit Noah and pray with me. She, along with many others, had obviously heard of him. She, along with you, had prayed specifically that God would encourage me in only a way that I knew would be from Him. THANKS!

Anyway, if any of you are wondering if God hears your prayers, HE DOES! He knows our hearts, He cares deeply to show us His love. All I did was ask God a question...I didn't know He'd have such a specific answer.

I have to say that since our meeting with the docs on Monday regarding Noah's status, I have never been more hopeful, optimistic, encouraged...I have never trusted God more in my life than I do right now...I'll tell you why in another post...

Today when I took Em to school we "cranked" Beautiful Day 3 times in a row, then after I dropped her off, I "cranked" Yahweh several times and had a great prayer time in my car while driving to workout. I find that my car is one of the best places to pray because I can be quiet or shout or whatever and people either think I'm loco or that I'm just singing to music. Try it!

Also, regarding my being mad at God, I know He can handle it, I've resolved it with Him, just as we get mad at people we love here on earth...we apologize, ask forgiveness and move on. For those of you who don't know me, I cannot lie, so why try with God who knows everything...He loves me and knows me better than anyone. He feels the same intimacy about you, so allow yourself to have a REAL relationship with Him...it'll be the richest, most fulfilling experience of your life.

Medical Update:
Anyway, it seems like we are in a holding pattern while Noah's lungs recover from pneumonia. He had what was called a "white out" in his left lung so the RT's (respiratory therapists) have been doing chest pounding and massage every 3 hours this week to loosen the increase in mucus. We have two sets of friends that have children with cystic fibrosis and this is a part of their lives daily (so many to pray for...). The chest x-ray this afternoon showed his lungs looked good after this weeks therapy. Once Noah is over his pneumonia, we'll have the docs perform a tracheostomy because a chest tube is not a permanent choice. We will also need to make a decision soon about the best way to feed Noah...if he can swallow sufficiently then he wouldn't need any feed assistance-though the trache does pose a problem for oral feeds getting into his airway. The other 2 options are the tube he's on now that bypasses his stomach into his jejunum that goes thru his nose or a "mickey" button that is a little feed tube that goes right into his stomach from his abdomen. These things will all allow Noah more mobility and us the chance to hold him and play with him and eventually take him home.

Some blogs have book recommendations on them, so I'm joining the club...this morning I started reading "Intercessory Prayer" by Dutch Sheets (while on the treadmill burning 414 calories in 45 min:)) Anyway, I encourage anyone who wants their prayer life world ROCKED to pick it up and dive in! I only got to page 38 this a.m. but was extremely encouraged and challenged.

Well, we had a meeting with the three main docs yesterday afternoon. The jist of the meeting was that there is nothing else they can do for Noah, except help him get over his pneumonia so that he's strong enough to have a tracheostomy and move up to the regular floor. The PICU Attending physician said that if there are other physicians, naturopaths or specialists that we know, they are MORE THAN WELCOME to come assess Noah without the hoops to jump through or red tape of regular circumstances. The visiting specialist would need to consult with the docs here in the PICU, but anyone is welcome to come read his charts...

The meeting was surreal, to say the least, but I wasn't discouraged for some reason, when in reality all they told us was that Noah is showing them that he is progressively getting worse and they don't know why and have no way of helping him.

I'm not mad at God anymore...I trust Him and know that Noah is in our lives for a purpose. This kid has "met" more people in more cities and countries around the world than he's ever visited! Even if you've never physically met Noah, I pray that his journey would continue to lead you closer to God and not further, that you would be encouraged in your faith and challenged in your walk of life to live with hope and live life to the full.

Until a little later today...

My official faith crisis

I need to know if there truly is a SCRIPTURAL reference for the saying, "God only gives us as much as we can handle..." I can't find it and I feel like it's just a nice christian saying because I can't handle this...sure, I'll get comments now saying, "God knows you better than you do..." but, you guys, this is really hard. If God is the one who gives life and takes it, then why are we in a position as parents to decide if Noah should be on life support...don't worry, I'm not losing my faith in God, but the reality is, I am mad at Him. If I weren't to say it, I'd be lying. There is no such thing as a secret, since God knows my heart...I would hope God can handle my being angry...it's not about me, it's about Noah and God, so that's pretty jacked up!

The docs are all dumbfounded. There are no answers. Monday we will have another big powwow to figure out what the next plan of action is regarding more genetic testing, though the smartest guys in the nation have been reviewing him and have come up with nothing. His MRI pics are being sent to some guys in Europe and across the States to determine if something, somehow has been missed. The CDC still doesn't know why a bunch of mice are dead. Basically no one knows anything except that Noah is hypotonic and needs the ventilator to live. I realize this is a raw post but it's the reality, so I'm not going to blow sunshine at everyone.

There will be talk of nerve biopsies from his eye and arm along with a brain biopsy...we don't know if we'll do the brain biopsy. "What did you do today?" "Oh, I allowed surgeons to biopsy my kid's brain..." This is ridiculous you guys, parents, NO, HUMANS, should not have to make these decisions!

If and when we decide to have Noah on a trache tube, the PICU guys informed us that that means 5 days later he's sent to the regular hospital and then from there, home. Noah is NOWHERE near being able to go home.

I know there are hundreds of thousands of women around the world, every day, that watch their babies die. I feel that void. I am NOT giving up on Noah, please don't think that! I'm just in the hardest place in the world because, literally, the only one who can heal Noah is the only One. I so desperately want that to be His choice! I can have faith enough to move a mountain, but it's not a magic trick, I can't MAKE God do anything...the Bible says that if everything Jesus did were written in books, the WHOLE WORLD could not contain it...I have just as much faith as any one of those women...I know that if Noah dies, heaven is a perfect place, and he will have healing there...I just don't know why He brought him into our lives to take him away...

Well, there you have it...my official faith crisis...good night.

Baby Face
So, my gramps used to sing me the song, "Baby Face" by Art Mooney. Before Noah was born, I taught Em the lyrics and from day one, she started singing it to Noah. By looking at him, you can see why it's one of his songs...

Baby face, you've got the cutest little babyface
There's not another that could take your place
Baby face
My poor heart is jumping
You sure have started something
Baby face, I'm up in heaven when I'm in your fond embrace
I didn't need a shove cuz I just fell in love with your pretty baby face 

PRAISE! So, the 3 specific gene tests run on two different disorders came back normal. So, that is great, however, it puts us back at square one of another round of tests...

I had a really good talk with the geneticist and resident today. I actually confronted the one about the "A" word (autopsy) because the doc had used it on two different occasions, saying if we didn't find out what was wrong with Noah, we'd find it out in an autopsy. Well, I informed the doc that we weren't having an autopsy and also that that word is a bit raw to use with parents. I also asked if that meant they were giving up on Noah, stating that I need to be assured that they are busting their butts to find answers. The doc understood where the "A" word could have come across that way, but assured me that they have spent a lot of time and will continue to do so to try to find answers. On Monday Noah will have an evoked auditory test and an evoked visual test to learn more about his peripheral nerves.

SOOO, I'll keep reaching for the hem of His garment, I'll eat the crumbs from the table, I'm going to keep praying and praying and praying...thanks for doing the same.

Well, Em just came to see "brudder". She loves him so much, it's sooo cute! Ciao!

Em's First Day!
Em did great Wednesday. She thought Thursday was her "summer vacation", pretty cute, huh? Today was her second day and she loved it, as well. Bobby and Bebe took her and then I picked her up. It was a good set up. Anyway, just wanted to share this milestone with all of you. I pray that as your children go to school this year, whether it be preschool, college, abroad, whatever, that they will be blessed not only in their thoughts and minds but with encouraging friends and peers, ones that will challenge them to be better people, to grow in selflessness, and that this generation will be so focused on God that their lives would impact everyone around them. Let's teach them that this life is not all about us! 

I just wanted to thank you all for your prayers for the other kids here at TCH Denver. One of the girls that was down the way from Noah when we first got to the PICU, an 8-yr old, well she went home yesterday. I ran into her and her mother down by the salt water fish tank. She looked great! She's in a wheel chair for a while, but will recover beautifully. It was so encouraging to see her so healthy. Also, our friends, John and Amber from Pueblo with the daughter who had to have heart surgery, they think they'll be going home on Tuesday! Lots of kids, too, have moved from the PICU up to the recovery floors, so we are thankful for that, too. There are new admits down here, of course, so we'll be praying for them, but I wanted to encourage you all that your prayers are working in so many ways. In addition to our family, you are blessing so many families here. Keep it up!

This is Noah while the nurse and RT were repositioning his tube the other day before he coughed it out. Notice the food tube is in his right nostril. In the next picture it's in his left because when he extubated, the RT pulled the breathing and food tubes out. The tape job on the forehead was only temporary while they repositioned the tube a half centimeter. Obviously a half centimeter was too much!
Here he is two days ago...the tubes are in the right spot now. If it sits on the juncture of where his lung lobes split, it irritates and he coughs a lot so that's why he had to have it raised up a bit. You may ask how they know where it's sitting...well, Noah gets a chest x-ray almost every morning...apparently they are trying to "treat" him with radiation! The x-ray today did show his lower left lobe has pneumonia again. He's been coughing, sneezing, and having a lot of secretions, so they took some cultures and he's on an antibiotic again.

There are still no answers from the CDC. It occurred to me that the CDC isn't just for the USA but for the WORLD, so they sure as heck better figure out what was in Noah's stool that killed a bunch of mice...

Also, the two pending specific gene tests, are still in queue. Those are said to take at least two more weeks. With both, Noah would be the first known kid to present them in infancy. The docs here have said they have tested for everything! I asked them if they are looking too hard, if it isn't something right under their noses...we can put people on the moon...

Noah and I had a good cry last night. I soaked the sushi blankie, but if felt so good to lay my head on him and be close to him. I can't hold him easily with the tube, especially with his record of coughing it out, so I do whatever I can to be near him. I'm not sure if the hospital crib/bed will hold my weight so I partially "spoon" him while supporting myself on the floor with one leg. He smells so great! I wish you could all squeeze him and see him. He's pretty amazing! Yes, I'm biased!

I told my brother in law tonight that I'm not praying for a miracle because I want a nice little life with an awesome husband, two kids and a dog. I'm not interested in the so-called "American Dream". Mortgage payments stink and really, who loves cleaning your house week after week?! Give me Africa, give me an unreached people group, I know my life is not my own...I just want to live it with the people God put in it. I've obviously been contemplating Ecclesiastes a lot lately. I want my life to be meaningful, useful to God, a light in a dark world. Anyway, tomorrow I'll put Em's first day of school pics up so you can share the excitement. 

Wow! How on earth do students in Seoul know about Noah?! Thanks for your prayers! Today the CDC in Atlanta confirmed that Noah does not have the botulism bacteria in his stool sample, but there are two bacterias growing that they have yet to confirm. (This is follow up testing to the tests they performed weeks ago when the mice died from bacteria in Noah's stool...) We continue to wait for more test results and answers... Noah continues to win hearts left and right. For a guy who can't even talk, he sure is smooth!

Em starts preschool tomorrow morning. I'm mixed about it because, in our family, it's not just preschool, she's beginning 20+ years of schooling, most likely! She's excited one minute but sad the next. Obviously under the circumstances, there are mixed emotions, but once she's there, I know she'll love it.

Noah has had a bit of a cold, I think, because he has been coughing and sneezing quite a bit, but doesn't have a lot of boogies. Because he's on the respirator, we can't hear him cry or cough or sneeze or anything. It's like a silent movie.

Thank you for your continued generosity and support. Please continue to spread the word about Noah. I have always been so in awe of the way God makes this big earth feel like a small world by connecting people in heart. We love you all and want you to know we pray for you as God leads us. Until later...

FYI, something got switched on the comment moderator so for a week no comments came through...I think I fixed it, but thanks for posting comments even though they didn't seem to come through. 30+ comments downloaded today, in case you guys are reading them...
Ade

September 3rd
Our wireless access doesn't work on the second floor right now, so I am down on one typing this while Jason and Noah hang out upstairs. Due to the holiday weekend, we won't have any results from any tests for a while. I'm having a tough time since he coughed out his breathing tube. I don't want to even leave the room to use the bathroom. I feel sick to my stomach being at home even though I need to do that to shower and spend time with Em, but being away from Noah's room is really hard for me now. The docs all changed on the first which is tough b/c our last one was a realist but also was optimistic.

Because he coughed out his breathing tube again, he is sedated a bit more, which can be good...he can sleep more, so that's good, but there's a fine line on sedation because I still want him to be able to work his muscles. We do PT with him every day so that he doesn't atrophy.

I'm not happy with Adam and Eve AT ALL, especially Eve. I wonder what mothering would have looked like if she hadn't messed things up! It's the hardest thing to be a parent and not be able to "fix" things! Noah continues to melt my heart minute by minute. I want to squeeze him and love him and snuggle with him. I never knew you could love your second kid as much as your first...I didn't know I had that kind of love in my heart.

Okay, so sobbing in a public place isn't pretty, so I'm headed back up to his room. Just wanted you all to know he's stable, he's cuter than ever, he's gaining weight, and he's being blessed by all your prayers! Thanks for everything!

Noah coughed out his breathing tube again today. I witnessed it and his sats went down to 40. He was blue/green. The docs and respiratory therapists ran into the room and had to re-intubate him. He is stable and sedated now. Thanks for your prayers.