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It’s a Beautiful Day

Kissing Noah Goodbye, Audrey Imfeld, NILMDTS photographer.

Kissing Noah Goodbye, Audrey Imfeld, NILMDTS photographer.

Eleven years ago, it was bitter cold in Denver, Colorado. 2 or 3 degrees, if I remember right. The chill is still part of my memory, though most of me felt numb.

Jason went out to the parking garage of Children’s Hospital to pull up the car and let it warm up for a few minutes. I stayed behind on the 4th floor where I bundled up our 7 month old son, Noah, for a short drive across town. He had only gone outside one time during his 5 month stay at the hospital… [Read more…]

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

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.

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.



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!