Wednesday, November 19, 2008

Our new blog

We were in need of a new start... so here it is:
Grace and Peace

Wednesday, November 5, 2008

Missing Noah in pictures, part 10

I'm missing my little guy a lot tonight...


Thursday, October 23, 2008

Memory Card

When Noah was first diagnosed, we distributed prayer cards with his adorable face to remind people to pray for healing and to share his story. An image of this prayer card eventually found its way on to the side bar of my blog and many others. I can't tell you how much it meant to me to visit the blogs of friends and strangers and find Noah's goofy little smile gracing those sites.
Jodie Allen designed those amazing prayer cards and has repeated her kindness to me by designing a memory card now that Noah is gone.  We both wanted a card that captured Noah's spirit and life... something that was joyful and not sad.  I think we were successful.  

So, my friends in the blog-o-sphere... if you would like to replace the prayer card button on your blogs with this memory card, please feel welcome to do so.  It eases the ache in my heart a little to know that others will help me preserve the memory of our sweet little boy.

Wednesday, October 22, 2008

Missing Noah in pictures...part 9

Doesn't he just make your heart melt?  
Noah lost the ability to smile in the last few months of his life, so each picture I have of him grinning has a special place in my heart.  
I miss him more today than yesterday.

Saturday, October 18, 2008

Saturday, October 11, 2008

Thursday, October 9, 2008

Now I Lay Me Down To Sleep


As some of you know, we had a photographer come and take pictures of our family on the day we took Noah off of the ventilator.  This service was provided free of charge through an organization called Now I Lay Me Down To Sleep and an amazing photographer named Monica Carroll.

This organization matches families experiencing the loss or anticipated loss of an unborn or newborn child with a professional photographer. The photographs are a great source of comfort and healing for the families in the weeks and months following their overwhelming loss.

NILMDTS is having their annual fund drive.... please read the information below if you are interested in making a donation.


With the Month of October being recognized as Pregnancy and Infant Loss Awareness Month, The Now I Lay Me Down To Sleep Foundation holds its Annual Fund Drive for six weeks starting in mid-September and ending in October. It is our hope that those in a place to make even a small contribution to NILMDTS will consider doing so allowing the organization to provide adequate resources, training, communication and tools necessary in support our amazing contingent of professional photographers who provide the gift of free remembrance portraiture to families in need.

Your donations help the organization in many ways -
  • By supporting the continued education of our volunteer photographers
  • By allowing us to further our outreach to hospitals and hospices across the world
  • By offsetting the costs associated with outreach efforts including Formal NILMDTS Training Seminars
  • By supporting the Family Forum which creates a productive and supportive haven for healing
  • By supporting the Photographers' Forum which provides a helpful environment for our member photographers to express their feelings and receive advice on the various issues that they face in this noble work
  • By supporting the day to day operations of our Headquarters Offices

Now I Lay Me Down to Sleep is recognized as an IRS 501(c)3 charitable organization (Tax ID#77-0656322) and your donations are always entirely tax deductible. When you donate, you will receive a thank you card that serves as your receipt as well as an enclosed card you may to send to the family of whomever you made the donation in memory of.

With an average of 2-million hits per month on our web site, imagine if everyone contributed just $5 to the organization!

Your donation truly will make a significant difference in the continued success of NILMDTS.

There are several ways that you can donate to NILMDTS today.

The first and easiest is to donate through our secure website by clicking here. NILMDTS is run 100% on donations and we truly could not provide the support necessary to our photographer volunteers without the kind generosity of donors like you.

You can also pledge your support through iGive.com, an online shopping portal where a portion of all supported purchases you make online are automatically donated to NILMDTS.
Click here for more information and to register!

You may also send a check to our mailing address:

NILMDTS Annual Fund Drive
7800 S. Elati St. #111
Littleton, CO 80120

Monday, October 6, 2008

Sleep

Sleep has become increasingly hard for me since we lost Noah.

Once I fall asleep, I am usually okay... but falling asleep is the challenge.  My brain simply won't turn off.

My thoughts inevitably turn to Noah and that usually brings on waves of sadness that don't help matters much.  

Tonight, my sleeping issues are compounded by a nasty cold that snuck up on me yesterday.  So, now I sit in the living room at 2am, battling an alternating runny then stuffed nose as well as the aching of my heart. 

Friday, September 26, 2008

Missing Noah in pictures...part 6

Not one of Noah's happier moments...but he was still cute even as he cried.  This picture was taken after a 4 hour drive from St. Louis to Louisville to watch an UMSL match.  I'm pretty sure he was thinking, "Mom, this was not such a great idea."
 

Wednesday, September 24, 2008

Love to CYC

In the aftermath of losing Noah, I have become an organizational mess.  I suppose this isn't too surprising, but I am frustrated with it nonetheless.  We have received countless cards and donations, both to the Rise School in Noah's name and to us personally. I have started and lost many lists trying to keep track of our generous friends and family... I am still hoping to compile a list and send personal thanks to as many people as I can, but am worried about missing someone.  

There are several groups of people who we love dearly and I want to recognize them on the blog in case my efforts fail at reaching them individually.


One of the hardest parts about leaving St. Louis was leaving St. Louis CYC.  Josh had been coaching club volleyball for CYC long before we met and it was very important to him.  The coaches, players, and parents became like family to both of us... we celebrated our marriage surrounded by members of the club and they helped us welcome Noah into the world.  

CYC has continued to love us as we grieve over Noah's death.  The money sent to us by those affiliated with the club easily covered our hotel and food expenses while Noah was hospitalized and made a dent in the medical expenses as well.  We continue to feel loved and encouraged by our CYC family and are humbled by their care for us.

Please share our gratitude with those who may not follow the blog.

Friday, September 19, 2008

There is a reason

What my head believes and my heart clings to...

Missing Noah in pictures...part 5

Only me on my knees 
Singing holy, holy 
And somehow 
All that matters now is 
You are holy, holy

Tuesday, September 16, 2008

Thursday, September 11, 2008

Missing Noah in pictures...part 3


From September 11, 2007...
Oh, how your momma misses you.

Monday, September 8, 2008

Missing Noah in pictures...part 2

Noah is about 5 days old in these pictures... sleeping on a light bed because of mild jaundice.  More than anything in the world, I want to reach into my computer and scoop him up and hold him...

Words of hope.

COME TO JESUS (by Chris Rice)

Weak and wounded sinner
Lost and left to die
O, raise your head, for love is passing by
Come to Jesus
Come to Jesus
Come to Jesus and live!

Now your burden's lifted
And carried far away
And precious blood has washed away the stain, so
Sing to Jesus
Sing to Jesus
Sing to Jesus and live!

And like a newborn baby
Don't be afraid to crawl
And remember when you walk
Sometimes we fall...so
Fall on Jesus
Fall on Jesus
Fall on Jesus and live!

Sometimes the way is lonely
And steep and filled with pain
So if your sky is dark and pours the rain, then
Cry to Jesus
Cry to Jesus
Cry to Jesus and live!

O, and when the love spills over
And music fills the night
And when you can't contain your joy inside, then
Dance for Jesus
Dance for Jesus
Dance for Jesus and live!

And with your final heartbeat
Kiss the world goodbye
Then go in peace, and laugh on Glory's side, and
Fly to Jesus
Fly to Jesus
Fly to Jesus and live!

(Thanks, Kim, for reminding me of this song and sending the lyrics to me... God has used it to remind me of the truths that give me hope.)

Tuesday, September 2, 2008

Speechless

The UA volleyball team played its first matches this weekend.  Josh's first weekend coaching at the division I level was a good one... the team went 2-1, with a big win over Iowa on Saturday night.

It was also an emotional weekend.  Josh and I were speechless when we discovered that Noah's name has been embroidered on all of the Alabama volleyball jerseys... what a sweet, unexpected tribute to our little Noah man.  



The team also wore blue ribbons on their shoes (and Coach Green on her shirt) in Noah's memory.  We continue to be blessed even in our sadness.


Saturday, August 30, 2008

Missing Noah in pictures...part 1

Noah adored his dad.

I adored watching them together.

(You can tell how much Noah loved Josh in these pictures because he has offered Josh his pacifier... I am smiling and crying at the same time just thinking about it.)



Friday, August 29, 2008

Bama love

Josh went back to work this week.  And was welcomed back with love by the Alabama volleyball team... these posters greeted him at his first practice:




Many thanks to Coach Green and the entire Alabama volleyball program... you mean the world to us.

At a loss for words...

I used to walk around composing blog posts in my head.

Without conscious effort, my brain would begin to craft a post outlining whatever adventures Noah and I had that day... and I would often take pictures with the express purpose of sharing it with the blog world.

But my muse is gone. And I miss him terribly.


Friday, August 22, 2008

Remembering Noah



This video was shown during the visitation at the memorial service for Noah.  It makes me cry every time I watch it.  Special thanks to Buddy Overstreet for putting it together for us.

Wednesday, August 20, 2008

Funeral announcement

Noah's obituary was published in the Tuscaloosa News on Monday.  Click here if you would like to read it.

Tuesday, August 19, 2008

Gratitude

Thank you to...

...our parents who have loved us well through this entire journey.

...our friends who have called, written, emailed, texted, and come to Tuscaloosa to comfort us.

...to the Alabama athletic department who has overwhelmed us with encouragement and support and made us feel like family.

...the nurses and respiratory therapists at Children's Hospital who loved Noah along side of us and took great care of him (Special thanks to Sasha, Elizabeth, Kate, Vicki, and Frank in the PICU and to Courtney, Beth, Carri, and Amy on the 5th floor).

...Dr. Percy and Dr Winkler who spoke wisely and compassionately to us as we struggled with tough decisions.

...my friends in blog world who rallied so many to prayer and have shared our story far beyond what we could have imagined (Jodie, Fern, Katie, Heather... the list goes on and on).

...those we know and those we don't who have lifted Noah in prayer and showered us with love.

...our gracious Heavenly Father who has welcomed Noah home and healed every part of him.

Sunday, August 17, 2008

364 days

Our sweet little Noah passed away yesterday.
We were blessed and thankful to have him in our lives for 364 days.
We are rejoicing because we know that he is now completely healed.
We will miss him every day for the rest of our lives.


Noah's memorial service will be held at Capstone Church at 10am on Wednesday, August 20th, with visitation at 9:30am. Capstone Church is at 1907 University Boulevard in Tuscaloosa.

In lieu of flowers, we would appreciate donations to be made to The Rise School in Noah's name. Noah would have started school at Rise on August 13th and the staff members there touched our lives as they provided therapy to Noah throughout the summer. The address for donations is:
RISE SCHOOL
Box 870305
Tuscaloosa, AL 35487

Wednesday, August 13, 2008

Breaking the silence

At long last, our computers have been returned to us.  

Even in the absence of my blog posts, we have been overwhelmed and awed by the love and support that have been poured out as we travel this journey with Noah.

Noah remains in the the pediatric intensive care unit on a ventilator.  His MRI on Friday revealed that the damage from the leukodystrophy has extended into his brain stem... an area of the brain that controls involuntary functions like respiration.  This was not entirely unexpected, but the speed with which the disease has spread surprised even our pediatric neurologist, who has been seeing Noah since March.

Noah, while stable, is still a very sick little boy.  

We continue to covet your prayers for wisdom and peace and comfort.

Friday, August 8, 2008

Two weeks

Two weeks ago today we took Noah to the emergency room. I don't think Josh or I expected that he would still be in the hospital today.

Our conversation with the doctors yesterday was hard but informative. They gave us two options of treatment for Noah... both difficult, both requiring a leap of faith.

For now, we have decided to let our little guy rest and recover from all that has happened over the last 14 days. He is finally receiving food again via his g-tube (really only the second time he is being fed in these two weeks) and the ventilator is helping him breathe (although he is showing evidence that he can do it on his own when he wants to). Our plan is to give him several days to work back to full strength and then reassess. We also are requesting another MRI... hoping to gain additional information about what is going on in Noah's brain that might be causing his problems with breathing (it is very easy for the doctor's to blame everything on Noah's leukodystrophy but we would like a little more data).

Please pray that we would have wisdom, perseverance, patience, and strength. Please pray that Noah, more than anything else, would prove to the doctors that he is willing to breathe on his own without the ventilator.

PS... We are without any laptops at the moment as they are being repaired at the Apple Store. And, unfortunately, I can't seem to post to the blog from Josh's phone. So please be patient with my updates.

Wednesday, August 6, 2008

Wednesday afternoon update

Noah's struggle to breathe on his own continued this afternoon and the decision was made to put him back on the ventilator.

He is stable, but still a little sleepy from the sedation they gave him for the intubation.

We are meeting with the doctors at 11:15am tomorrow morning to discuss our next step.

Thank you for all your prayers.

Please pray

Noah's carbon dioxide levels were extremely elevated when we arrived at the hospital this morning.  He was lethargic and wouldn't open his eyes.

I am so angry all I can do is cry.

We specifically asked the doctors yesterday if they were going to keep track of his CO2 and we were told not to worry about his gas levels.  When they finally measured it this morning after I raised the alarm because of his odd behavior, they were higher then they had been during his whole hospital stay. 

He is still on the BiPAP machine but if his numbers don't improve they will put him back on the ventilator.

Noah is simply not doing a good job exhaling and getting rid of CO2.  His brain may be responsible but no one can really seem to tell us.  They are finally going to start feeding him again... which hopefully will give him some additional energy to work on breathing a little bit more on his own. 

This was a very discouraging morning.  

Tuesday, August 5, 2008

A better day

Today was a better day.

Thank you for the flood of encouragement and love after my last post... it helped restore a little strength and hope in my spirit after a really hard and long day.

Our computer issues continue which leads to my infrequent posts... the battery on our laptop will not charge using our power adaptor so we have to use it sparingly throughout the day.  Josh snagged an appointment at the Apple Store on Thursday to see if they can help us solve the problem.

But on to what you really want to know...
Little Noah Man came off the ventilator today!!!  Hooray!

After a good chunk of sleep last night, he was in a much better mood today.  We were able to distract him from the breathing tube by playing with him and that allowed his respiratory rate to stay in a much more normal range.  They weaned him from a little of the support the ventilator was giving him and then took his breathing tube out around 5pm this afternoon.  After a little coughing and sputtering, he took off breathing like a champ!  

They currently have him on the BiPAP machine to try to support his respiratory system a little ... he looks like a cross between Darth Vader and Snuffaluffagus when it is on.  He has a black skull cap that covers most of his head down to his neck and then a blue mask over his nose that connects to a long tube that goes over his head.  Pretty funny looking.  I'll try to snap a picture of him at some point as my description doesn't quite do it justice.

He was much more tolerant of the BiPAP machine this time around and seemed to be in good spirits.  He has been playing with his toys and interacting with the doctors and nurses.  He is still having a hard time resting as his current bed in the ICU is in a high traffic area, but he has taken a couple of catnaps over the course of the day.

A couple of specific prayer requests for the next few days:
-We want to have a pow-wow between the doctors we work with in the ICU and the pulmonary doctors who will take care of Noah when they move us back to the 5th floor... there has been a communication gap between these two teams that needs to be filled before Josh and I will feel comfortable with the plan for Noah's care.

-Noah will begin receiving formula through his g-tube tomorrow.  Please pray that he digests this food easily and that there are no respiratory side effects, specifically with any feeds that take place while he is on the BiPAP machine.

-We need Noah's carbon dioxide levels to stay in the normal range.  

-We need answers as to what is causing Noah's respiratory difficulties... no one seems to be able to tell us this at this point... and a course of treatment that will not dramatically affect his quality of life (freedom of movement, ability to go to Rise, etc).  

Thank you, thank you, thank you, for joining us in praying for our sweet little guy.  He steals my heart every time I look at him and I just want to scoop him up and take him home. 

Monday, August 4, 2008

Stairs

Josh and I both agreed that the best thing that happened today was that we found the stairs.  

The elevators at Children's hospital are soooo slow sometimes and then become very crowded with all the people who have been waiting.  We have been looking for stairs since last week and finally found them today... 

But you know it has been a rough day when this discovery makes the top of the highlights list.  

The rough parts of the day included:
-Noah staying on the ventilator today... and hating every minute of it.
-Noah being so agitated by the breathing tube that he could not fall asleep even though he was completely exhausted (they finally gave him some medicine around 6:30pm tonight that allowed him to rest)
-Me breaking our back up laptop... which is why I haven't updated the blog until now.  It is the second laptop I have managed to wreak havoc on in the last month.
-Coming home to Tuscaloosa for the second time without Noah

I am very glad that day 11 in the hospital has come to an end.  I only hope day 12 is better.  

Sunday, August 3, 2008

PICU, part 3

Noah is back in the PICU.

He had a really rough morning that ended with a slight obstruction in his airway and high carbon dioxide levels.  They have put him back on a ventilator and he is breathing much more comfortably now.  His numbers are back to normal but the trauma of the morning has resulted in a lot of fluid build up in his lungs.  He is receiving treatment for this fluid every 4 hours and we are hopeful that much of it will be cleared up by tomorrow.

We have a lot of questions and very few answers.  

One line of thinking is that Noah's digestive issues are continuing to plague him.  We started feeding him via g-tube on Friday night.  We found a middle ground with the doctors regarding his feeding regimen... not nearly the increase in volume that they were wanting but still a fairly ambitious plan that tested his stomach capacity.  This was potentially our undoing.  In hindsight, it seems that Noah started getting fussier yesterday after we hit the 3 ounce mark in our feedings... and then we used a continuous drip over night.  All of that formula may have encouraged some reflux to sneak up past the fundoplication and add to the secretions that have been his nemeses from the beginning.  These secretions make breathing more difficult for Noah and reduce his ability to vent carbon dioxide effectively.

A second line of thinking is that Noah's leukodystrophy is causing him to lose control of the muscles that help him keep his airway open.  This is a much more discouraging possibility.  It is not uncommon for kids with neuro-muscular disorders to struggle with breathing and many end up with tracheostomies to control their airways.  Please pray fervently against this.  We obviously do whatever is necessary for Noah but do not feel ready to take this step anytime soon.  

We are exhausted but relieved but so thankful that Noah is breathing easier.  He is likely to be in the ICU for the next few days and I am making no predictions about when we might be going home.  

“You must never confuse faith that you will prevail in the end — which you can never afford to lose — with the discipline to confront the most brutal facts of your current reality, whatever they might be.” 

The long road home

Just when it started to look like we were in the home stretch of this hospital stay, we things have taken a turn.  Noah's carbon dioxide levels were escalated this morning leading to some additional (much to Noah's dismay) hours on the BiPAP machine.  We are frustrated and discouraged... and unsure what direction this might take us.  Please pray.

Friday, August 1, 2008

Picking fights with doctors

Today is the 1 week mark of our hospital stay with Noah.  Hard to believe.  It looks like we are stuck here until Monday at least, barring any major changes.  Although I think some of the doctors wish they could kick us out earlier-more on that later!  

Noah has had a really good day.  He has been taken off the BiPAP machine except for potentially at night and has only minimal supplemental oxygen going in through his nose.  His numbers have looked really strong... even his carbon dioxide levels have dropped into the upper part of the normal range, a first since we arrived last week.

The doctors want to do a sleep study because they believe Noah isn't venting carbon dioxide effectively.  The study would help us know if he needs any kind of respiratory support while he sleeps at night.  Unfortunately, no sleep studies are performed on Friday or Saturday nights... so the earliest we could have one done is Sunday night, and that isn't even a definite.  Josh and I are hoping that Noah's CO2 numbers continue to remain the normal range so we can be discharged and schedule the sleep study as an outpatient procedure for a later date.  Not sure if the doctors will be on board with this plan...

He seems to be recovering from his surgery with amazing speed... the small incisions from the procedure don't seem to bother him at all.   We have just begun to feed him via his g-tube again... which is the source of fiery debate between us and the doctors.  I won't bore you with the specifics, but suffice it to say that the "orders" for Noah's nutrition are ridiculously aggressive.  Prior to being in the hospital, we were feeding Noah three ounces four times a day.  The goal given to us this morning was to make it to five ounces five times a day by tomorrow... which is simply not realistic at this point.  The nutritionists are making calculations without knowing Noah's whole story or even talking to us... not to mention the fact that the surgeon has told us time and time again that the biggest mistake made after fundoplications is OVERFEEDING!

We have already gone two rounds with the residents on the respiratory team (who don't quite know what to do with parents like us) and made a sweet dietician very uncomfortable.  The bottom line is that Noah's nutritional needs are VERY different than that of a typical 11 month old and his stomach behaves VERY differently as well.  We know that better than anyone in this whole hospital.  We are willing to slowly increase volumes and work on his caloric intake but we want to do so at a conservative pace.  I'll keep you posted on whether or not the doctors agree with our perspective!

Noah & Blue

Thursday, July 31, 2008

Noah's new friends

Noah has made lots of new friends since he has been in the hospital! Many of the nurses he has had over the course of the week come by to check on him from time to time even when they are assigned other places!

I snapped pictures of his cutest new friends...

This is Simon the Loving Lion... he is the mascot of Children's Hospital.  One of the chaplains brought him by this morning and have him to Noah.  A poem accompanies Simon that goes like this... "When you cry, I am here for you to hold.  When you're afraid, you'll never be alone.  We can be together each and every day because my love is here always."

This is a giant ballon of Blue, the dog from Blue's Clues.  Noah has a small version of this balloon at home so I couldn't resist this one when I saw it in the gift store.  He loves it... earlier when he was getting agitated and his heart rate was elevated, I brought it down close to him and he reached out both of his hands to touch it.   His heart rate decreased almost immediately!
 

Ventilator drama

Noah's surgery went very well yesterday.  The fundoplication basically creates a one-way valve between his esophagus and his stomach which will hopefully prevent any reflux and vomiting from happening.

The biggest concern after the surgery is Noah's breathing.  The doctors prepared us yesterday for the possibility that they would not take Noah of the ventilator after surgery and send him back up the the PICU.  We were fine with this scenario because it would give his little body a chance to heal before it had to concentrate on breathing again.  And we love the nurses in the PICU.  =)

We checked in on him after surgery and he was still pretty out of it from the anesthesia.  We left to grab some dinner and to check into the hotel, anticipating that he would sleep most of the time we were gone.  Turns out that Noah had other things in mind... he woke up after we left and started breathing on top of the ventilator, which means he was breathing better on his own.  He hates having the breathing tube down his throat, so I think he was saying, "I'm ready!  I'm ready!"  The doctors started weaning him off the ventilator and tried to extubate him.  At which point Noah said, "Just kidding!  I'm not ready!"  He had a lot of difficulty getting deep enough breaths to maintain the oxygen levels he needed ... so back on to the ventilator he went.  

Because of all that drama, the doctors were less than optimistic this morning about his ability to come off the ventilator today... and started talking about all sorts of unpleasantness if he couldn't breathe on his own that I won't go into.  Fortunately, the second attempt at his extubation went smoothly and he is breathing like a champ.  They have him on a BiPAP machine (very similar to what people use who have severe sleep apnea) to make the transition off the ventilator a little easier.  I am extremely relieved that he is off the ventilator...please pray that he continues to breathe well on his own and keep his airway clear

They are not going to feed him through his g-tube until tomorrow at the earliest... giving him the chance to focus on breathing today before adding a new challenge to the mix.  

The Lauer Tour of Birmingham Hotels

With Noah in the PICU again, we have returned to our tour of Birmingham hotels.  

(Thanks to everyone who suggested the Ronald McDonald House... we actually used the Ronald McDonald Family Room back in St. Louis when Noah had his first hospital stay and it was fabulous.  They have a brand new RMH here in Birmingham, but it has been completely full since we arrived.  The other option given to us by the social workers is a coupon for a discount at the "Medical Center Inn".  I looked up this "Inn" online and the first review I found was "clean but creepy" at which point I looked at Josh and said "I don't think so.")

Our first two nights (Fri & Sat) we needed as little stress as possible and wanted to be close... we stayed at the DoubleTree downtown.  Very nice hotel with big, soft towels.  The TV was not so great and the internet cost $10.  (I am firmly of the belief that free internet is one of my inalienable rights.)

Our third night (Sun) things were calming down so we moved a little farther away from the hospital and stayed at a Drury Inn.  Free internet and breakfast were desirable perks but the bed was definitely not as comfortable as the previous two evenings.  Lousy towels.  

The came our two night stay (Mon & Tues) in Noah's hospital room in 5 tower.  See the chair-bed picture... it tells the whole story.  I won't even describe the bathroom.

After Noah's surgery yesterday, he headed back to the PICU for the night (more to follow on that later) so we once again sought out a room to sleep in.  Pavlina hooked us up with the Birmingham Southern University rate at a Comfort Inn (close to the Drury from Sun. night).  Better breakfast than the Drury Inn... partly because the woman who managed the breakfast area treated it like her own kitchen and welcomed us warmly into it.  Free internet again, although I fell asleep to quickly to use it to update the blog.  

It looks like Noah will be in the ICU again tonight... and we have decided it probably is a good night to head back to T-Town to Chez Lauer and visit our tempurpedic mattress.  Clothing supplies are dwindling again and a load of fresh laundry will carry us through the weekend.

Wednesday, July 30, 2008

Little Noah Man

Here is our sweet little guy hanging out during his last day in the PICU... snuggling with his favorite puppy and with his pacifier firmly in place on his right thumb.

Noah was fascinated by this Gerber daisy that was in my beautiful birthday bouquet from Judy and Pav.  I had to be careful or he would pull all the petals off!

Here is a picture of our deluxe accommodations in 5 Tower at the hospital!  Our two beds are next to Noah's crib... they fold back into chairs by day.  Rumor has it that we can request some additional padding (egg crates or camp mattresses) to put on top of these chairs at night... we will definitely be investigating that for tonight!

Cancelled flights

It just dawned on me that we would have been on the plane right now on our way to St. Louis had we not had to take Noah to the hospital.... sadness. 

Green light

The pulmonologists and GI docs have given Noah the green light for surgery today!

I am a little nervous about this decision because of Noah's CO2 levels last night but the doctors felt like we could move forward as long as Noah's oxygen levels stay strong, which they have.

We are on the surgery schedule for around 2pm, but it could be earlier or later depending on how the rest of the day goes for the surgery staff.  If you are interested in praying for the surgeon by name, the head surgeon is Dr. Keith Georgeson.

You have got to respect the long hours that doctors keep... our GI doc, Dr. Cavender, came by to talk to us after 7pm last night and the surgery fellow came by before 7am this morning.  Crazy.

Tuesday, July 29, 2008

Special request

Noah's last carbon dioxide readings were too high... when we were in the PICU he was riding around 50 (somewhere in the upper 30s or low 40s is normal).  The pulmonologist was going to give surgery the green light if he was in the same neighborhood today.  Unfortunately, his reading today was 72.  Not good.

No one seems to be able to tell us why he isn't venting the CO2 effectively so we aren't sure what will correct the situation and make him ready for surgery.

Please pray that they decide to do a second reading later and that it is lower so we can still have Noah's surgery tomorrow OR that they do another reading tomorrow and surgery is an option for Thursday or Friday.

In search of a moment of peace

A room in a pediatric hospital is a busy, busy place.  

We've had no fewer than 17 medical people (doctors, nurses, nursing students, residents, fellows, nutritionists, therapists, etc.) come through Noah's room today.  While all are welcome (except maybe the nursing student who just stood and stared at me like she was waiting for me to do a dance), it makes for somewhat of a parade and sometimes a traffic jam.  These visits also included two respiratory therapy sessions at midnight and 4 am that Noah slept through... which cannot be said for me and Josh.

Noah news (Day 5 @ Children's):

-Noah had a pretty brutal gastritis attack this morning.  Twice he spit up some nastiness that was definitely not food (he is being fed with formula going directly into his small intestine) and that slightly concerned us.  As the hours passed, he became increasingly agitated to the point that his heart rate skyrocketed and his face turned bright red.  The neurology fellow who was in the room at the time got a wee-bit freaked out by this turn of events and began to frantically search for a cause.  Our pediatric surgeon happened to wander in the room around this time and casually said that we may want to consider venting his g-tube then wandered back out again.  Sure enough, after hooking up an empty syringe to his g-tube and the subsequent flow of additional nastiness, Noah settled down and looked at us as if to say, "What took you so long?" Our GI doc said he thinks the nastiness was a result of a irritated stomach and esophageal lining... not a huge deal, just uncomfortable for little Noah man.  

-We get to add a new specialist the myriad of doctors who are involved in Noah's care.  Dr. Clancy, a pulmonologist or lung doctor, introduced himself today and talked with us a little about the options we have in our attempts to protect Noah's airway.  He is currently receiving respiratory therapy, which consists of a therapist coming in every four hours to essential pound on Noah's chest to loosen up any junk that is in there as well as using a machine that assists him in coughing.  These are both therapies that we can continue at home if necessary.  Our respiratory concerns right now are pretty simple.  Noah's oxygen levels drop significantly when he is not supplemented with extra oxygen... he should be at a 100 all the time but he tends to drop into the upper 80s when he breathes completely on his own.  Also, there is some concern that Noah is not clearing the carbon dioxide out of his lungs effectively.  Please pray that his gas levels are stable, otherwise surgery might be postponed until next week!

-Noah is tentatively on the surgery schedule for tomorrow afternoon for his fundoplication.  We are waiting to get clearance from the respiratory docs based on Noah's carbon dioxide levels and have our fingers crossed that no other emergency surgeries bump Noah out of line.  He will have to be on the ventilator and be under anesthesia for the surgery... neither of which we are looking forward to.  Please pray that he is able to breathe on his own after surgery... otherwise he will end up back in the PICU for recovery and remain on the ventilator.  

-Our nurses have been awesome.  Debbie, our current nurse, may actually try to take Noah home with her.

-Today's simple pleasure:  Crushed ice.  Is there anything better?  And we have all the crushed ice we could want a few steps away at the nurses' station.  

Monday, July 28, 2008

Movin' Up

We are officially out of the pediatric intensive care unit!  

Early this afternoon, Noah was moved into a private room in the pulmonary unit.  We are slowly settling into our new digs and enjoying the side benefits of being in a regular room.... we can now use our cell phones without restriction and bring food into the room.  There are also two chairs that fold out into beds for us to sleep on, so it looks like we will be having a slumber party with Noah for the rest of the week.  Not as comfortable as a hotel, but definitely cheaper!
(If anyone needs to know, we are in Room 504.) 

Here is the rest of what we know:
-Noah is mostly likely going to have a fundoplication on Wednesday.  His g-tube study today revealed what we already expected, which is that he is refluxing like crazy and compromising his airway.  A fundoplication seems like the best bet to fix this problem and might make feeding Noah simpler than it has ever been.  We were hoping to see Noah's GI doctor this afternoon, but he never showed up... hopefully we will have a chance to discuss the fundo with him tomorrow.

-Noah is receiving respiratory therapy several times a day.  This consists of a therapist taking a machine that vibrates and placing it on Noah's chest in an attempt to shake up any congestion in his lungs.  They also are using a machine called "Cough Assist" where they use positive and negative pressure in his lungs to help him release and cough up some of the secretions that are clogging his airway.

-The doctors don't want Noah to have anything in his stomach until after the fundoplication, so Noah has a TP tube that with deliver food into his small intestine for the next few days before his surgery.  I am anxious for him to have some nutrition as he has only be getting fluids since Friday morning.

Generally speaking, Noah is doing well.  He gets agitated when he is poked and prodded too much (understandably) and I think he is really hungry, but otherwise he is in pretty good spirits and loving his toys. 

Definitely not the way I expected to spend by birthday, but I am happy enough to have both of my boys by my side regardless of where we might be!  

Today's simple pleasure:  With the help of some friends from Bama who are coming to hang with Noah, we are going to sneak out for a little while tonight for a birthday dinner.  

Sunday, July 27, 2008

The Big Scare

So... Friday morning was "The Big Scare."  I will try to relay the important details without writing a novel.

Noah had been struggling with phlegm, coughing, and general reflux discomfort over middle part of last week.  We had been in touch with Noah's pediatric GI doc and tried to figure out what we could do to ease his digestion and clear out his throat.  

After sleeping with his dad in the living room recliner Thursday night, Noah almost lost the fight to keep his airway clear.  We awoke Friday morning to find Noah limp, unresponsive, and struggling to breath.  We rushed him to the emergency room in Tuscaloosa where he was immediately put on a ventilator and prepared for transport to Children's Hospital in Birmingham.  

It was, without a doubt, the scariest moment of my life.

He has been in the pediatric intensive care unit at Children's since Friday.  Saturday morning, after getting feisty with the nurses and attempting to pull his breathing tube out, Noah came off the ventilator and has been breathing on his own ever since.  His lungs and airway still sound junky and the nurses are suctioning out his airway periodically to ease his breathing.

Noah slowly seems to be returning to his spunky self.  He is actively playing with his toys and interacting with us.  He has most of his nurses wrapped around his little finger... this morning we arrived to find him propped up like a king, watching TV and playing with his toys that the nurses had rigged to hang over his bed.  

The nurses and doctors continue to monitor Noah's breathing... and will likely keep him in the ICU until they are satisfied that he is getting plenty of oxygen and flushing out plenty of carbon dioxide.  The next step will be to evaluate his digestive issues and possibly do a surgery that will strengthen the muscle at the base of the esophagus so that he can't reflux as easily (and therefore is less likely to aspirate).

We are digging in for a long haul... the attending doctor in the PICU said she would expect that Noah wouldn't be discharged until the end of the week at the earliest.  Unfortunately, this means our anticipated trip to St. Louis is cancelled... fortunately, because we had planned on going to St. Louis, Josh's schedule is clear and he won't really have any work responsibilities this week.  

The best part about the PICU is that there is always a nurse within a few feet of Noah's bed... and they kick us out overnight so we have to get rest.  There are some families who crash in the hospital lobby or the waiting room... Josh and I have opted to stay in hotels so far (Birmingham is about 50 miles from Tuscaloosa, a little too far for us to drive back and forth every day).  We are hoping to find some slightly cheaper housing for the rest of the week, but the details still need to be worked out.

I'm off to get some sleep now.  More updates later.  Thanks for your prayers.

Tuesday, July 22, 2008

Nuggets of wisdom

It had been my intention to compose multiple posts about what I learned while reading, "A Long Obedience in the Same Direction," by Eugene Peterson.  However, life got in the way and I neglected to do so.  

So, here are some of the nuggets of wisdom that I have gained, specifically the ones that spoke to me about our journey with Noah...

On PROVIDENCE (Ps 121):
"The promise of the psalm...is not that we shall never stub our toes but that no injury, no illness, no accident, no distress will have evil power over us, that is, will be able to separate us from God's purposes in us."  p 42

On HELP (Ps 124)
"The psalmist is not a person talking about the good life, how God has kept him out of all difficulty.  This person has gone through the worst--the dragon's mouth, the flood's torrent--and finds himself intact.  He was not abandoned but helped.  The final strength is not in the dragon or in the flood but in the God who 'didn't go off and leave us.'"  p 74

"Faith develops out of the most difficult aspects of our existence, not the easiest."
"We speak our words of praise in a world that is hellish; we sing our songs of victory in a world where things get messy..."  p 79

On PERSEVERANCE (Ps 129)
"That '[God] sticks with us' is the reason Christians can look back over a life crisscrossed with cruelties, unannounced tragedies, unexpected setbacks, disappointments, depressions--look back across all that and see it as a road of blessing, and make a song out of what we see... Perseverance is not a the result of our determination, it is a result of God's faithfulness."  p 133

On HOPE (Ps 130)
"A man or woman of faith who fails to acknowledge and deal with suffering becomes, at last, either a cynic or a melancholic or a suicide."  p 137

"The gospel offers a different view of suffering: in suffering we enter the depths; we are at the heart of things; we are near to where Christ was on the cross." p 138

"We need hope.  We need to know that we are in relation to God.  We need to know that suffering is part of what it means to be human and not something alien.  We need to know where we are and where God is."  p 145

"The psalm does not exhort us to put up with suffering; it does not explain it or explain it away.  It is, rather, a powerful demonstration that our place in the depths is not out of bounds from God."  p 145

Sunday, July 20, 2008

The long and the short of it

Sigh.

It has been a rough few weeks.  

1. Feeding
Our feeding challenges seem to be endless.  Just when we think we have figured out a workable protocol, Noah changes things up.  In the last month, we have gone from pumping formula to spoon feeding baby foods to using Noah's g-tube and a syringe to deliver a thickened concoction of formula, oatmeal cereal, and various other supplements designed to ensure calories and nutrition.  Noah will no longer suck on anything... the bottle, his pacifier, etc.  He bites on his fingers, pacifier and toys, but will only suck on rare occasions.  He also has regressed in his ability to eat from the spoon... he just lets the food sit in his mouth without using his tongue or trying to swallow.  While this is frustrating, I have to move past how the food gets in and concentrate on simply getting enough food/calories into Noah so that he gains weight.  We did get good news on Friday... Noah's chest x-ray was clear which means his vomiting has not landed any food in his lungs.  We also found out that Noah regained 7 ounces, bringing him up to 15.8 pounds (he had weighed over 16 pounds in early June)... also fabulous news.

2.  Hydration
Dehydration has been lurking in the shadows for the last few weeks.  With the transition to solid foods and even now as we use thickened formula, Noah's fluid intake has decreased significantly.  The challenge remains that Noah's stomach does not tolerated liquids well... they tend to increase the chance that he will throw up.  I have been giving him juice via his g-tube in between feedings and we have begun to pump water over night, but it is still a constant concern.  This is all complicated by the fact that Noah sweats a ton (especially his head) causing him to need even more fluids.

3.  Phlegm
(Isn't that a funny word?)  Noah has been having lots of phlegm issues lately.  It causes him to cough and gag, often getting him really upset when he can't clear the back of his throat.  One possible cause of the phlegm is the yogurt we have been feeding him to boost calories and protein... the milk in the yogurt apparently can cause extra secretions that drive Noah crazy.  When he sleeps, he sounds like an 80-year old man snoring and the need to clear his throat often wakes him up.  So, obviously, we have cut the yogurt out of his diet for the time being and are seeing some improvement.  

4.  Eyes
We go for our second follow up visit with the ophthalmologist on Tuesday.   As I have posted earlier, to our disappointment, the crossing has not been completely resolved by surgery.  We continue to patch his eyes, but have not noticed any dramatic results from this treatment.  He does not seem to have any problems seeing at this point, although his brain is probably receiving images from only one eye at a time.

5.  Gross motor skills
We have seen some improvement in Noah's gross motor skills over the last months, but this continues to be an area of significant delay.  Noah can roll from his tummy to his back with relative ease, but is resistant to rolling from his back to his tummy.  His physical therapist and I agree that Noah could roll in this direction, he simply doesn't because he hates being on his tummy!  Noah is unable to sit by himself... his head tends to pull him forward or backward and he doesn't use his arms at all to correct himself.  We try to keep him upright during the day, in his high chair or bumbo seat, so that his brain recognizes the correct perspective on the world.  He seems to want to sit up and we often catch him pulling against the straps of his car seat, but his muscles can't yet do the job.  Noah will bear weight on his legs, but he doesn't pull himself up into this position.  

6.  Verbal skills
This is another area of delay.  His babbling seems to be directly proportional to his nutrition... the more food he gets (and the less vomiting), the more he babbles.  I'm convinced that he has whole conversations with me but only through a series of vowel sounds.  He tends to keep his mouth open and that makes it difficult for him to use his lips and tongue to make any consonant sounds.  He sees a speech therapist from Rise and I am hopeful that if he hears other kids talking when he starts school that he will pick up some additional sounds.  Rise also has a lot of success teaching kids sign language... I would love it if Noah could learn to sign as a way to communicate.

Whew.  I'd be amazed if anyone is still reading after all that!  

Friday, July 18, 2008

Fabulous Fitterers


Noah had two special visitors from St. Louis last week!  

Kara and Kayla Fitterer came by our house after Kayla participated in one of UA's volleyball camps.  Kayla played for Josh on the CYC team he briefly coached before accepting the job at Alabama.  She recently verbally committed to play for the Crimson Tide in '09 so we have had a chance to see Kayla and her mom a few times this spring and summer!  They were sweet enough to bring Noah some fun new toys which have quickly become some of his favorites!

Thanks Fitterers!

Our welcome mat is out.

Now that the transformation of Noah's room and our guest room is complete, our welcome mat is officially out. We love having friends and family visit and are excited about the space we have in our rental house to host guests! And we are told that Tuscaloosa is a pretty fun place to be during football (er... I mean, volleyball) season... although I am not sure we are fully prepared yet for the experience!

Moma and Grandpa come to visit

I didn't snap nearly enough pictures while my parents were here but I did take a few... 

Moma and Noah play with Ellie the Elephant:


Reading Noah's favorite truck book:

Hangin' with Grandpa on the couch:

Taking a snooze with Moma:

Tuesday, July 15, 2008

Sweet St. Louie

I can hardly contain my excitement!

We booked tickets today for a trip to St. Louis at the end of the month!  Josh, Noah, and I will arrive in the Lou on July 30th and stay through August 3rd... hooray!

Monday, July 14, 2008

End of an Era

I find this highly depressing...


We hope this does not negatively effect our friends in St. Louis who work for A-B.  

Sunday, July 13, 2008

The fruit of our labors

Ah... the joy of having extra hands in the house to help.

My parents left this morning after flying in to Alabama on Thursday afternoon.  I wish I could say that I showed them all of the exciting sights in Tuscaloosa, but instead I took advantage of their free labor!  As I mentioned in an earlier post, Noah's room was the bigger of the two spare rooms in our rental house... I really wanted to take advantage of this space for guests we have visiting in the fall and needed to perform a switcheroo.  Noah slept in his new room last night and I can't wait to have visitors to break in the new guest room.

Here is a short tour of Noah's room (I hope you don't get dizzy):

video

Friday, July 11, 2008

Busy, busy

It has been a crazy week in the life of the Lauers.

Josh's brother, Nate, came in town last weekend for the fourth of July and to hang out with his favorite (and only) nephew. It was really good to see him and the time went way too fast.

Then we had the great pleasure of having Bill, Margaret, and Amy Bommarito over for dinner. Amy played on the first club team Josh coached for CYC before going on to play on the championship team at Washington University in St. Louis. She recently accepted the GA position as the director of volleyball operations at Alabama! We are so excited for her to be here in Tuscaloosa with us... and consider it a double bonus that we will get to see her parents more often as well!

Finally, my parents arrived in Alabama yesterday. I am not wasting any time putting them to work... we are flip-flopping two of the bedrooms in the house and painting along the way. Noah currently has the bigger of the two bedrooms right now and it makes more sense to make that the guest room.

Of course, I have neglected to take any pictures of these visits... although I had the best of intentions.  I still have a chance to snap a few pics while my parents are here, but for now, here are Noah's sweet little hands playing on one of his favorite toys.

Wednesday, July 9, 2008

A picture speaks a thousand words

I'm pretty sure this one says, "I love my Daddy."

Alabama-isms #6

When we first got to Tuscaloosa in February, we noticed these odd trees all over the place (including 2 in our front yard) that had been pruned in a fairly dramatic way. Only a few branches were left above the main tree trunk... we wondered what this tree would look like come spring and why in the world they were so popular.

Now we know. They are Crepe Myrtle trees and they are simply beautiful.  I never noticed them in St. Louis before, so I can only guess that they are more common in the south.  

Here are the pruned trees... strange looking, right?

Here are the blooms on the trees in our front yard.
If you look closely, you can see a big bumblebee.

Saturday, July 5, 2008

Weight woes

We knew it had been a rough eating month for Noah.  

I didn't know how rough until I took him to the pediatrician on Thursday.

He weighed in at only 15.4 lbs after cracking the 16 lb mark in May.  While I had expected some weight loss, I had not expected it to be so much.  

So we are back into weight recovery mode... trying to push as many calories as possible in a form that Noah is most likely to keep down.  

This is complicated by his finicky eating habits... he had been eating great from the spoon last week but this week doesn't bite down or swallow.  He continues to be unwilling to suck on his bottle.  His stomach tolerates thick food much better than liquids, which poses a challenge if we have to feed him by g-tube and not by mouth.  

Our most recent strategy involves making a thick rice cereal and formula mix that we push though his g-tube using a syringe and then add a little high-calorie yogurt drink for good measure.  It is quite the process but it has yielded good results so far.  

I'm planning on calling our pediatric GI on Monday to fill him in and pick his brain.  There is another type of feeding tube that goes directly into the small intestine ... this would allow us to bypass Noah's highly unpredictable stomach and hopefully guarantee a higher calorie intake.  We are anxious to find out if this is an option.  

The bottom line is that Noah is a happier kid when he isn't vomiting and is getting a decent amount of calories... we will do whatever we need to do to make that happen!

Friday, July 4, 2008

Daddy returns

I have considered making a post over the last few days that would be a direct request for sympathy.  You see, Noah slept for a grand total of about 4 hours over the course of TWO days.  That's right folks.  Needless to say, with Josh out of town, this was one tired Mama. 

However, time got away from me and I never composed that post.  Josh returned last night and we settled in expecting another long night of baby insomnia.  Noah had other plans... it seems that his sleep deprivation techniques was a direct protest to the absence of his father.  With Josh in the house, our sweet little man slept nearly non-stop from 10:30pm until 6:00am.  That, my friends, is a miracle.  

So feel free to join me in saying "Alleluia!"  Meanwhile, I will be doing my "Josh is home" dance with careless abandon.

Happy 4th of July!

Wednesday, July 2, 2008

Get your Noah fix here

Where did that first little piggy go again?

That sure is a cute little boy in that mirror!

How do you open this thing?

Mom, I really want to touch that camera.

My tribute to Marlie Duggin... aka Monkey Pants.

Dear Noah

Dear Noah,

Just so you know, night time is when people usually sleep.  Like mama.
I know you have a lot to be upset about, but could you save it for the morning?

Love,
Mama

Tuesday, July 1, 2008

Small doses of Noah joy


I love when I am holding Noah against my shoulder and he pulls his head back so he can look at my face.

I love the slightly red tinge to his hair.

I love when he gets mad if I take his toy away.

I love when he sticks his thumb in his pacifier.  

I love kissing his feet.

I love the sound of his laugh, even though I have only heard it once. 

I love the way he plays the same note on his piano over and over again.

I love that he tries to roll over the very second I put him on his tummy.

I love the dimple on the top of his right ear.

I love when he is sitting in his Bumbo and he tries to touch everything in reach.

I love when he touches my face.


Saturday, June 28, 2008

New challenges. (As if we didn't have enough already)

1.  We are diving head first into the world of solid foods.  Noah simply cannot consistently keep formula down and he seems to better tolerate baby food.  The first challenge is getting enough food into to him to meet his calories needs... the second challenge is keeping him awake through feedings as food coma seems to set in after two bites.

2.  Noah has developed a new vocal ability... screaming.  Our normally calm and serious little boy has discovered his vocal cords have much more power than he realized.  He has been fine tuning this skill every time I leave the room, put him down, or change his clothes when he isn't in the mood.  Charming.  

3.  I am learning how to wait on the Lord.  Again.  (Haven't I been here before?)  It is clear how God is providing for Josh in his job at Alabama...he is enjoying his new position and all the challenges it entails.   It is even more clear how Noah has been provided for by the doctors, researchers, and his spot in the Rise School.  His provision for me seems to be a little slower in emerging.  I won't lie... I miss St. Louis, I miss my friends, I miss my church.  I have wrestled with God about His reasons for moving us to Alabama.  But, as I was driving to Florida, God worked a little on my bitter heart.  He showed me that, had I been given the choice between staying in St. Louis (where I was comfortable) or going to Alabama (where Noah would be able to attend an amazing school and be close to a scientist researching his mutated gene), I would have chosen the same path He chose.  So, I am resting in the provision He has made for those I love most and awaiting what He has in store for me.

Thursday, June 26, 2008

Home again, home again...

I arrived back safe and sound in T-Town yesterday, feeling refreshed except for the large stripe of sunburn across my back.  
(Will I ever learn?)

Noah gave me a half-smile (which is a big deal these days) when he saw me for the first time and then proceeded to welcome me home by puking baby food chicken and prunes all over the place.  Yes, it was as nasty as it sounds!  

The good news was that was the first time he threw up since I left... Josh focused on giving him solid foods and that seemed to get his stomach calmed down to a large extent (at least until I arrived home and Noah felt like he needed to revisit old times).  We are still working to increase his tolerance of the formula as a supplement because it simply has more calories than any of the solid foods.  The battle continues...

Here are a couple pics from my time along the Gulf of Mexico!




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