Thursday, August 31, 2006

August 31st
Here Noah is snuggling with his new puppy dog that came in a very generous care package the other night. Thanks again, to EVERYONE, for your continued thoughtfulness in so many ways! We are so grateful and daily humbled by your generosity. Noah continues to gain strength little by little each day. He had reflexes today in his arms and legs. He's gaining weight and as sweet as ever. Today he had a birdie bath and his nurse, Rachel, gave him a "Faux Hawk". He's so cool!

We are grateful for the team of docs that has cared for Noah for the last month. They have a "changing of the guard" today for the upcoming month. We pray for blessings on their lives as they have blessed ours. We also ask that you'll join us in praying for the new group of doctors as they carry long hours and are serving many patients.

For Noah, please pray that as he gains strength, he'll ween himself off the ventilator without any complications, that his lungs would be strong and healthy, that his muscles would continue to strengthen, that his myelin would regenerate and that day by day, minute by minute, Noah would flourish! Pray for MIRACLES for ALL these kids! Posted by Picasa
The age of big sunglasses...
Auntie Tonja from CA came to meet Noah and hang out with Em. In LA, they all have the big sunglasses.
Auntie Terra from Minneapolis came to visit...note the midwest has hip shades, too.
Mama even has big shades. I may be old, but I still got it! Posted by Picasa

Tuesday, August 29, 2006

August 29th
Today is Tuesday and a lot happened today and nothing also happened...We were moved from room 8 to room 1 because Noah is more stable and doesn't need one on one nurse care anymore. We've had two new nurses today. His urine sample came back healthy-no heavy metals. The docs finally sent out samples of my breastmilk to the CDC, Mayo, and another local lab for toxin screens. Still lots of tests in queue, so keep up the prayers. I'm headed home to sleep and Jason's here tonight. Tomorrow, my mom and I are taking Emily to her preschool open house. It's a big, big day! Thanks for checking in. There are lots of kids here that need healing, keep up the prayers. Adrienne

Monday, August 28, 2006

Noah's hand and foot
It's a little difficult to see, but last Wednesday before Noah was put in the iron lung, we had his foot and hand imprints made in plaster. A family that once had their child at TCH Denver donated 20 years worth of imprint gifts for families. We had to tape Noah's fingers back because he was so hypotonic, but he managed to curl his two middle fingers regardless, and made the sign for love in ASL, American Sign Language. It's a little hard to see in the picture, but pretty cool. Thank you, TCH, for such a neat gift for our family. Posted by Picasa

Sunday, August 27, 2006

Look who came to visit Noah...

Just kidding! My sister got first row floor at the last U2 concert and snapped pics of Bono and the boys all night. But, if anyone DOES know Bono, Edge, Adam or Larry, Noah thinks they are great and would love to meet them. No, seriously! One of Noah's songs is "Beautiful Day" and Em knows all the lyrics to "Yahweh" and always asks her dad to "crank" it when U2 is on. Maybe someday we'll all be in Africa together, loving on the kids!
So, yeah, Brooke Shields didn't come to visit Noah either, but it would have been cool if she had. We met her in London a year and a half ago. She was really kind and gracious. We talked mom talk while she bought a birthday cake for her daughter, Rowan. She was really sweet to Emily and sang "Supercalifragilisticexpialidocious" to her because Em told her she had seen "Mary Poppins". She was there starring in the theatre production of "Chicago". We didn't get to see it b/c we left to come home the day after we met her. Anyway, if anyone knows Brooke, she can come visit Noah, too. Posted by Picasa
Wires, wires, and more wires
Yesterday Noah had an EEG to measure his brain wave activity. The test showed no change from his previous one 3 weeks ago which was good.
This morning the docs were doing rounds and stated that he had reflexes! This may not seem like a big deal to you, but his knees and arms have not shown reflexes since we got here! Thank God!

This is a picture of his EKG this morning. They heard a heart murmur this morning so had this test run. The murmur is a flow murmur which is due to the fact that today his hematocrit (blood count) was 21.1, normal being 40. Noah will be getting 40ml of blood today. We would have loved to be his donors but it is a 3 day process, so we'll donate tomorrow in case he needs another transfusion later. They can use the rest for other kids if they want. Please pray for a healthy response b/n his blood and the donor's. Also, he had had a fever the other day, it went down, but this morning he has a low grade temp. Pray for that to go down again. Posted by Picasa

Friday, August 25, 2006

Parents...Looking a little rough but hanging in there...neither of us has worked out in a month and are atrophied, so I think I'll start doing the stairs. Jason's actually doing push-ups, sit-ups and deep stretching as I write. I'm doing them vicariously through him... We continue to meet more families and are adding to the list kids who need our prayers; cancer, leukemia, brain tumors, heart surgeries, rare disorders. Please remember the kids at Children's in Denver when you pray. It's so sad that children's hospitals even exist... Posted by Picasa
Here is Noah on his tube, holding mommy's hand. It's so good to see his face again after 3 weeks of the rhinocerous hat/c-pap ensemble.

Here's a close up. Please pray that he doesn't have pain...when he's awake he is aware of the tube down his throat and gags and coughs. His whole body coughs, though, and it wipes him out.
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The Space Capsule...
Noah is no longer in the iron lung, or space capsule as we called it, but we wanted you all to see the you know, he is intubated because this did not reinflate his lung.

The nurses did a culture on Noah's mucous and he does have slight case of pneumonia, so he is on an antibiotic for 7 days to fight that off.

His MRI was the same as it was 3 weeks ago, which we don't really know what that means, so we'll let you know as we find out...

His fever has come down a little, so we are thankful for that. We also realized from a new nurse today that if we have too many people in the room or are talking a lot, he wants to interact and becomes overstimulated. He then coughs or cries and isn't able to rest, so we are going to rotate visitors so we can keep his room as quiet as possible because sleep is an important part of healing.

Tomorrow we'll take pictures of him on the ventilator so you can see his face. It's nice to see him. Posted by Picasa

Thursday, August 24, 2006

What a day! Noah is intubated and his lung has reinflated. He is awake and alert, though on pain meds. He is breathing more breaths than the respirator, so that is a good sign. He is pink again, too! Thank you so much for your prayers, everyone! Some more to put on the list...Noah has never had a fever and is a bit warm tonight, so please pray for his body to rid itself of the fever. The docs also want to do another MRI to see what his white matter looks like-if it's changed, stayed the same or progressed. We are praying for a clear exam. The CDC and the hospital here are doing further tests on Noah's stools, urine samples, mucous, running more blood tests for heavy metal toxins, bacterias, viruses...basically, when three batches of lab mice die, they start running some serious tests...there are antidotes for some of these, so please pray for total healing for Noah Steven, Crowned in Peace.

We are in constant awe of God's hand on our son and His grace for our family. You are all such a blessing to us! We are so grateful for your love and support. Jason and I are spending the night with Noah tonight, continually praying over him.
Holy smokes, friends! Please pray hard! Noah's stool that was sent out to the Center for Disease Control actually killed all the lab mice. God told me 5 weeks ago that there was something he couldn't process that was building up as a toxin in his body! The CDC and docs here are all perplexed trying to figure what the toxin is b/c they don't know if it's botulism or something else. He was on the iron lung yesterday/last night and it didn't reinflate his lung. The CDC news came this morning so Jason and I decided to have him intubated (sp?) and put on a respirator until we have answers. Also, please be praying against any spirit of witchcraft that has been spoken over him. Noah is God's ALONE! Satan is defeated and cannot have any one of God's. Mt. 18:6

Now the docs and the CDC are busting their buns to figure this out. Keep praying!

Wednesday, August 23, 2006

Thanks for all of your prayers and encouragement. Noah is sleeping soundly in his "space capsule". Molly is spending the night with me tonight and Em and dad headed home to get some good rest. I believe God has His hand on Noah. I have peace knowing he is resting against God's chest while God makes him new. His little life is so powerful! I am in awe of how he has already surrended to God's call on his life and how he is allowing himself to be used by God to minister to so many people!
Please be praying for Noah. His lung collapsed this morning so they will be putting him in an iron lung. Please be in prayer for Noah and the whole rest of the family. God bless.

Monday, August 21, 2006

Who's kids are these, anyway?
The moment Emily was born, I had an overwhelming knowledge deep in my heart that she did not belong to me or to Jason. We may have been used in the process, but I knew in my heart that she belonged to God and that my role was to love her, teach her and trust God with her life. Nothing is different with Noah. I know he isn't mine and I know that somehow God loves him more than Jason, Em or I ever could. I am sad for any parent on earth who has tried to control their children's lives in any way because I am sure they have strained relationships in one way or another. Emily and Noah are God's kids. Jason and I are simply some extremely blessed parents being graced with their lives intertwined in ours. I am truly humbled by this and am so grateful to God for this truth. Just some stuff for you all to chew on... Posted by Picasa
Taking a dip
Noah got a "dip" bath yesterday instead of a sponge bath. His nurse held him while I washed his back. He didn't seem to squirm too much. Notice his big new blue sponges on either cheek. Apparently the Respiratory Therapist didn't love the Rabbi look...

Yeah, and on me, that's called a two day old pony tail, going on three... Posted by Picasa
Have you guys noticed how cool Noah's blankets are? Well, a friend of mine makes them, the sushi one and the brown and blue polkadots...anyway, she sells them on, an on-line artisan website, under My Dolce Baby. She told another etsy girl,, about Noah and she was so touched by his story that she made him a little onesie that says, "God's Little Miracle" on it. It's pretty darn cute! Thanks, Kim and Kimberly!
Well, Noah had a bit of a rough night last night. He's stable this morning but he had a weird episode where he freaked me out enough to push the red emergency button above his bed. 3 seconds later the lights were bright and 10 docs and nurses were bedside. With Noah's hypotonia, he usually does not draw his knees up to his chest but last night he pulled into fetal position, looked at me and looked in distress. Then, of course when everyone came in the room, he stopped and fell asleep! They ran a chest x-ray to see if he had had a heart attack or if a lung collapsed, but it came back normal.

Due to the fact that all his tests so far have come back negative, we will be here for an indefinite amount of time while further tests are run. The geneticist, who is one of the top in the nation, has informed us we are now in very rare stuff. Today they are requesting a lab in Delaware to do some genetic testing, results of which will take at least two weeks. There are still two tests pending that we hope to hear back on this week.

Thanks for checking in.
Apologies across the board...
So, since I moved to 19th and Downing, that is TCH, a lot of significant days have passed...I apologize for not recognizing them with calls, though please know I've thought of you on those days...Heather Rudolph on the 8th, along with Lillian, Uncle Chris on the 10th, Bob and Betty on the 11th, Danar on the 12th, Mr. Thomas on 18th, Uncle Dan on the 19th, Ra on the 20th, and in case we are here for a lot longer, which is probably the case, G & G Vogeli on the 26th, and Bobby on the 29th. I'll have to check my daytimer to see who else I have missed, but Happy Birthday, Happy Anniversary, and know you are loved and thought of often!

Saturday, August 19, 2006

August 19th, Noah's 10 week Birthday...
Every Saturday is Noah's birthday, weekly, that is. He's gaining weight and so every time we take his rhinocerous O2 mask off, he looks different than the day before. He's getting a little chin and chubby cheeks, too, thank God.

We had some awesome news yesterday concerning many of the blood tests that the docs ran on Noah. The conditions/syndromes/disorders that blood work went out on all came back negative. His spinal tap showed healthy protein levels and was clear. There are still two tests pending. We thank God that we have had negative results thus far. This, however, has now put the doctors into uncharted waters...the conditions they were almost convinced he had, he does not...he continues to keep the doctors on their toes.

His muscles continue to be hypotonic, or floppy as Emily describes it. We are giving him some homeopathic remedies that encourage his overall health, provided by his pediatricians. They have been a huge blessing to us, specifically his PA-C. We love her to pieces!

There is so much to write, but I am going home to spend time with Em. We had a good night together last night, got up and played with her toys, painted toe nails, but the best was when the two of us cranked up the U2 song, Beautiful Day - a song for NOAH, and we danced around the family room. The lyrics talk about how after the flood, all the colors came out...since we have been at Children's Hospital, I have NEVER seen so many rainbows in all of my life! It has rained so much and every time it does, a full or double rainbow follows, right outside Noah's windows.

Thanks for your continued prayers for our little man. He continues to melt the hearts of his nurses. We continue to have our eyes opened to the reality that the whole hospital exists for children. We have a lot of families and kids to pray for here, not just our son.
Adrienne Posted by Picasa

Friday, August 18, 2006

Bubble Magic
Emily got a bubble sword for her birthday from her buddies, the Haugens. Here are some pics of Em making mammoth bubbles in our back yard.

She's also sporting her new leotard from her friend, Jackson. It has "diamonds" on it and a twirly skirt.

 Posted by Picasa
He had a bath
While Noah had a bath, I snapped a few pics so you could all see how cute he is! He has gained weight, so that is great! Today, actually in moments, he is having a spinal tap to collect spinal fluid for further testing. My mom is here with me because I know this on I could not do alone. Jason is with Em at home trying to provide a little normalcy. Please continue to pray for our little miracle. The moment he was born, I have to admit I was totally smitten...he melts my heart at every flicker of his eyelashes. Anyway, thank you all for your continued prayers, encouragement and support. We are so humbled. We know we are loved! Posted by Picasa
Noah Stephen- Friday morning 8/18/06 Here are some new prayer requests for Noah and the family. Noah will have a spinal tap done today at 11. This will provide more for testing. Please pray for Noah during the procedure. He will also have a nerve conduction test done. They are also watching his blood count and monitoring if he will need a blood transfusion of about 30 ml or more. At twenty four weeks a baby basically filters "mama's" blood and begins with his own blood causing a natural anemia. His hematocrit levels are at 24- they will do the transfusion at 21. Please pray that Noah's little body keeps up with production of blood. Another way to pray for Noah is the issue of mucous that they have to suction from his airway. He needs to keep his airway free to breathe. Continue to pray for his oxegynation levels. Adrienne said that he seems to be on a cycle of having a really good night, then an okay night and then a difficult night. Please pray for Noah's comfort and for good sleep.

Adrienne and Jason were at the meeting with all the doctors. Unfortunately they do not have specific answers or diagnosis for Noah. They continue to search and are waiting for very specific test results. Please pray for speedy returns on the tests results. It has been 1 week since some of tests were sent out and some could take another two weeks. Some of the tests are very expensive to run so they can only run them when there are a certain number of cases. Please pray that Noah's case is the one that they need in order to run the test. Please pray for specific answers.

Please pray with me for a MIRACLE for Noah. God is the great physician- he created all things and can make all things new! Pray also for Adrienne, Jason, big sister Emily, Kaija, Bobby, Betty and Dana (as well as nurses) who are helping to provide Noah's intensive care; strength, sleep, courage, clarity, faith and peace during this time. God, thank you for your love for us. We trust you and love you too.

yours, Rachel

Wednesday, August 16, 2006

Nurse are Amazing

Noah and his lovey, Nurse Maria
Noah is crushing on his nurses! He's become quite the heart melter in the PICU. He's got nurses lining up left and right to be on his primary list. He is one blessed little guy with all these wonderful nurses who care for him around the clock. They are the best! Say lots of prayers for them because they work really hard!

Our Son the Rabbi

Our son, the Rabbi... Noah's cotton balls that protect his ears from his hat straps unraveled from squirming around so much. We think he looks like a Hasidic Jewish Rabbi. We are very proud of him:)

This little ensemble makes Noah look like a Hasidic Jewish Rabbi.

The PICU TickleMonster

We have a favorite book which we found in England last year.  Em, Nana, and I tagged along while Daddy worked and one day we discovered this book.  Even though we are stuck in the hospital and Noah is a very sick boy, his big sis still needs tickles and snuggles and love.

The Tickle Monster even lives at the PICU in Denver. Emily cannot seem to escape him, poor thing!

Two Weeks

Well, we have been at TCH for two weeks now. Noah is in serious but stable condition. We continue to wait and wait and wait for test results. Thanks for your patience as we wait patiently here. We'll keep you posted as we know anything. They have been on the phones checking on the status of the tests, which is a good thing. Due to the extent of testing, some are being sent to the Mayo, Johns Hopkins, Atlanta, etc.

Tomorrow we'll be having a big meeting at 3pm CMT with all the doctors and a social worker. Since many of the doctors are in different camps, they haven't been communicating, so it will be a good time for everyone to get on the same page and to hear Jason's and my heart about our son.

Two years ago I did a study on Proverbs. It's all about raising a son, so, since I have a little bit of time, I'm jumping back into it. I'll share deep thoughts as they come to me, whether you want to read them or not, ahem.

I am also doing my own research on the side and stirring the waters for the doctors. I am making them think outside the traditional box. The problem is, all the routine tests keep coming back "normal." Without a diagnosis, they won't treat Noah, so we are just maintaining, but not being very proactive.

Noah's pediatricians are putting together a homeopathic remedy that is an overall support tincture for his little body. I've made the docs aware that we'd be pulling in the natural side of medicine. Also, I've challenged the attending physician to find a D.O. that hasn't totally crossed over to the allopathic side of medicine and have him come take a look at Noah. I've also been given the name of a specialist in L.A. that is a mold toxicologist. We've emailed him and hope to hear from him soon, as mold toxicity is one of the avenues I am on right now. Please pray that if it is down this road, God will reveal it and have a cure for our son.

Ade xoxox

Monday, August 14, 2006

The Loaves and Fishes

I just wanted to encourage you all with the fact that the meals that are coming our way by all of you generous friends and family are not only delicious, but they are nourishing more than just the Graves crew.

There is a young couple here from Pueblo that have a 4 month old in CICU recovering from heart surgery. They were sleeping in the lounge and ordering take out which was outrageously expensive. We were able to share a meal with them and encourage their hearts. They just got into the Ronald McDonald house, so this is great, and will be staying there for probably a month or so. It's neat to meet the other families and be able to focus outward on them instead of on ourselves.

August 14th

What a morning! So, the new nurse today got tangled in Noah's feeding tube and almost pulled it out! We had an x-ray to make sure it was still leading into his small intestine and it was, thankfully.  Noah and I slept great last night. We both slept pretty soundly for two 3-4 hour increments. He's taking a great nap right now. I called his pediatricians this a.m. They practice integrative medicine so I told the docs here that they'd be consulting with them, as well, as far as homeopathic medicine and support.

Jason and I want to say how thankful we are to all of you for your continued prayers and support! You are all amazing! We are truly humbled by the love and encouragement we are receiving. THANK YOU! It's been great reading your emails and blog responses. It's so cool to know, too, that you are all spreading the word about our handsome guy.

Yesterday at Red Rocks Church, our friends stood in our place as the whole church prayed for Noah! Shawn and Jill Johnson, the pastors, told us this and it was such a cool thing because it was already something God showed me in my heart last week.

The nurse today, of course forgiven for the feeding tube incident, asked me if we were believers. I said yes and she said she could totally tell because of the sense of peace in Noah's room. God's watching over our little man, we are full aware.

Sunday, August 13, 2006

Parenting from the Hospital

July 11th, Em's first gum chewing extravaganza...

So, I don't know how to do an entry w/o a picture, so will have to ask Jason that question in the a.m., but chose this one so you could all see how Big Sis is doing...So, I made up a rule two years ago that our kids couldn't chew gum until their 4th birthday. Em totally bought it, except when her younger friends would chew it in front of her. Anyway, for her 4th birthday party, it was a gum extravaganza! This is a pic of her chewing before breakfast. We figured the faster she goes through it, the sooner it will be gone! She's very responsible with her gum, you should know...she saves her wrapper and throws it away in the trash can when it gets old. Also, she knows if she plays with it, it goes in the trash. For those of you with little ones, you are more than welcome to adopt our 4th birthday rule (or 5th or 6th, haha).

Anyway, tonight is my first night alone at the hospital since the 2nd when Noah was admitted. I have peace. My dear friend who was an ICU nurse before she had two girls was here with me for a while tonight and talked me through the monitors a little more thoroughly, which was helpful. She also formed a great connection with Noah's nurse, and asked her to watch out for me, too.

Yesterday and last night were my hardest so far...not for any particular reason. I was really stressed out about my milk production because I've been consistently behind Noah's demand so they are supplementing a special formula. It occurred to me today, though, that he only gains weight when he's on formula, so I talked to the nurse and we'll add a little of my milk to his formula, kind of like my milk is his vitamin for antibodies and the formula is the food. My stress levels dropped big time just making this decision, and regardless of everyone's opinions and 2 cents, he is gaining and maintaining on it, so we'll stick with this for a while.

Today it also helped that I got off "campus" (lingo from my old job). I took Emily to a birthday party for her little friend around the block. She had a blast making crafts, but especially because it was a princess party and she got to wear her Cinderella dress and shoes. Then she and I went home by ourselves to read books and take a nap. It was good to be together without any distractions or the worry of hospital life.

Princess Emily, Birthday Princess Annie, and Big Sister Princess Kate (They sound like a batch of British ladies!)

Well, I'm going to bed now. Noah is sleeping soundly. I asked my friend, Becky, the former ICU nurse to please tell me what verbige she would use to describe Noah's condition so you could all have a clear picture and she said he is in critical but stable condition, meaning, he is doing well, but definitely needs to be in the ICU for breathing purposes.

In the meantime, we are still just waiting and waiting and waiting for test results.

Thanks for all of your prayers and encouragement. God is the One supplying rest and sweet comfort.

Saturday, August 12, 2006



We've moved in. Since Jason works from home, he is able to do some Internet work while hanging out with Noah. We are grateful God opened the door for him to work for a great company in England, working from home. We have the smallest patient but the biggest room in the PICU. It even has a full bathroom, though we haven't bathed in days...cleanliness is overrated.

(*We found out after we moved out of the PICU that Room 8 was usually reserved for fatal patients.  I think it was a good thing they didn't spring the "fatal" part on us right off the bat!)

Noah and Auntie Danar

My younger sister, Dana, holding Noah in TCH Denver PICU

Last fall Dana made a CD for our women's retreat with songs that she chose for various reasons, all of which are awesome praise and worship songs. At Noah's birth, we played the CD continuously and it has been playing continuosly since we moved to the PICU. When Danar came to hang with him the other night, she sang the songs to him for about two hours. He loved it!

Emily Holds Noah, Picture

Emily holding Noah in TCH Denver, PICU, with C-Pap
August 12th, Em gets to hold Noah. That means she hasn't held her brother now for 8 or 9 days!  That's just wrong!  She loves him so much!  Never once has Emily been the jealous older sibling. She's pretty great with him!

Please pray for her during this tough time. She's holding up pretty well but is well aware of what is going on. She misses her brother and mom and dad a lot! Posted by Picasa

Friday, August 11, 2006

Update from Jason

Contacting Us:
Please feel free to call and visit - if you know us, you know we like people around. My dad taught me a very important lesson in life - relationships are all that you have and all that will last when you are gone.

The best thing to do is call us at the hospital (Children's Hospital of Denver) and they will transfer your call to our room. Feel free to call our cell phones, but we aren't allowed to have them on in the ICU, so it maybe difficult to get a hold of us - so feel free to leave voice mails.

Thanks, everyone!


PICU Update from Rachel

Friday 8/11/06. Noah is still in the Pediatric Intensive Care Unit at Children's Hospital this evening. He returned good oxygenation levels after they tried a different breathing apparatus to assist his breathing, a C-pap and a non-rebreather combination. Please pray his lungs will continue to grow stronger and expel the CO2 . They also have placed a central line which will allow for easy access blood draws and tests, as well as necessary medications.

We are thankful the little guy won' t have to be poked for every test now. Please pray against infection.  There are a lot of germs in hospitals, as you might imagine.  Noah's feedings are going well via the feeding tube although he misses mommy time, so Adrienne is talking, soothing, touching and cuddling him constantly. Please pray Noah will begin to gain weight. They are on contact isolation precautions in his ICU room, which means masks and gowns are worn in and out of the room to protect Noah's immune system against infection. Pray for continued sleep for Noah so he can grow stronger.

Adrienne's parents arrive tonight and so we can pray for God's healing sleep for everyone in the family!

Thank you so much for your precious prayers. We thank God for his blessing and presence in our lives.
Yours, Ade's friend Rachel

Noah in South Dakota

Photo by Michelle Arnold, Watertown, SD, July 2006
What a handsome guy!  During the 7 weeks Noah was home we took a road trip to South Dakota to see family and friends.  Michelle Arnold took this picture of Noah on my lap and then emailed it to me.  I'm so glad she did!  I love this picture so much!  Noah slept most of the time in South Dakota, so this wake moment is a treasure to me.

Update from Rachel

It is Friday, 9:30am, 8/11/06. I just talked with Adrienne and she is off to do some research on the natural side of things as far as what it could be that Noah isn't taking well.  Up to arriving at the hospital a little over a week ago, all Noah had ever had was her breast milk and unlike with Emily, she didn't feel like Noah and she were compatible.

Ade's sister Dana is at the hospital with Noah, and Jason is getting some work done at home. Noah's present condition is he has stabilized in the PICU at Denver Children's Hospital. His vitals continue to be good. The attending physician has asked for phone calls to follow up on the tests sent out to see if any results are back. They are looking for both genetic metabolic disorders and leukodystrophies, conditions pertaining to the white matter of the brain.

Please pray today that Noah would not have any of the leukodystrophies at all! Please pray he would be able to sleep well, is comfortable and for continued strength for both him, the family and all those helping at this time. Thank you for your concern!

Adrienne's friend, Rachel

Picture: Bobby and Noah's Hands

This is a picture of my dad's hand and Noah's.  My dad is 6'5" tall, so there's a bit of a size difference, I'd say... Posted by Picasa

Noah's Name

For those of you that don't know, Noah means "peace, rest, comfort". Steven means "crowned". We knew we wanted our son's middle name to be Steven after his grampa, but hadn't decided on a first name. One day while I was working out before Noah was born, I was reading John Elderidge's book, "Wild at Heart" and in there it talked about in the OT when Rachel had just given birth and was dying and wanted to name her son, "Ben Oni" which is "son of the south or son of my sorrow", but Isaac intervened and named him Benjamin, "son of my right hand."  I love the story and how the father blessed his son with a powerful, life giving name, so I told Jason he was in charge of naming our son. Jason prayed a lot about it and had two names chosen, Noah or Jude, Jude meaning "praise". When we were in the delivery room and Noah wasn't coming out after a few pushes, he called him by name, and Noah came into the world.

Thanks to some friends who did some studying, here's more about what Noah means:

Peace, or "shalom" from the Hebrew. It means, among other things, complete, whole, NOTHING MISSING, NOTHING BROKEN.

“Peace” (32:17-18). The Heb. word for peace, shalom, expresses a basic and vital biblical concept. The word suggests wholeness and harmony, that which is complete and sound, prosperous, healthy, and fulfilled. The word occurs over 200 times in the O.T. In narrative books it typically is used to describe an absence of hostility or strife. In the psalms and the prophets it goes beyond this, so that in at least 2/3 of the biblical references the word indicates a total fulfillment that comes when persons experience God's presence. Isa. 32:15-16 portrays both the inner peace and material prosperity that will mark the joyful fulfillment of man's hopes under the rule of the Messiah, God's Prince of Peace (Isa. 9:6).

“Peace” is mentioned over 60 times in the N.T., with this later meaning, enriched by the O.T. idea of shalom. In Christ our lives are made whole, our relationships are harmonized, and we experience the spiritual and psychological wholeness that God intended for human beings in the original creation (cf. Rom. 5:1; Eph. 2:14-17; Heb. 12:14; Col. 3:12-15).

Noah Steven has been crowned with peace. He rests and waits for God's revelation. Please continue to pray for his sleep that it would be a healing place for him.

Thursday, August 10, 2006

PICU Birdie Bath Picture

This is when he got a birdie bath and had all his head gear off so I stole a picture! It was great to see his face. Man, he's totally handsome! Posted by Picasa

Big Sis and Brudder, Before O2

This picture is before we moved to the PICU. Big Sis wanted to hold her "brudder", his nickname while in utero. Now in the PICU we can't see his gorgeous face very well. The next pic, though, is one when the PICU nurse was giving him a birdie bath and had his mask off. I had to capture the moment. Posted by Picasa

Waiting on Tests

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Looking a litte rough, but doing okNoah has been moved to the Pediatric ICU. Even though this sounds more serious, we are at peace since he is getting 24x7 attention by the best nurses and doctors.

The doctors have ordered a number of tests to determine what is going on with our little man. They are not expecting results for 1 or 2 weeks - maybe longer. So, we are in a holding pattern. Noah has some very positive signs - his heart, lungs, and spine are healthy. They are concerned about his strength - he was pretty weak when we brought him to the hospital, and has been on a feeding tube for 9 days. His lack of strength has affected his breathing, so they have put him on a c-pap. It is what they give to people with sleep apnea. It just puts a little positive pressure on his nasal cavity and keeps that more open.

Please pray Noah continues to gain strength and all the test results will be expedited. We are praying that Noah's life will continue to blow the doctors away...there are a few "camps" trying to determine what is going on, however they are stumped whenever they try to lump him into one category. We know God is the Great Physician, that He created men and women and their minds, enabling some to be astounding physicians. Now we are praying that God will reveal to the doctors why our little guy is snoozing away in the PICU, weak and unwell.