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.

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 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.  

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. 

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.  

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.” 

Stockdale Paradox as quoted in "Good to Great"

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.

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.

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!

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.

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.  

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.  

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.

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!  

Before and After

Progress is progress, no matter how small, right?

We are one week out from Noah's eye surgery.  It has been a long week as his recovery from the anesthesia has been slow... he still is not back to his normal self but we are seeing a little improvement day by day.  The eyes themselves seem to be healing, although his left eye still has some bruising.

The surgery definitely helped with the alignment of Noah's eyes, although they are by no means straight.  I would be lying if I said I wasn't disappointed ... but I also know the surgeon wanted to be conservative in his correction to avoid overshooting his goal.  

Josh will take Noah in for a re-check with the ophthalmologist on Monday... we are both interested to see what he says.

BEFORE

AFTER

1 in 3,000,000,000

I talked to our neurologist this morning.

Our blood tests reveal that neither Josh or I have the same mutation as Noah.  

Which means that Noah is one of two documented cases of a mutation in this genetic region IN THE WORLD.  (So we affectionately tell him he is 1 in 3 billion...)  Apparently, there is a journal article originating from Japan about a child with similar mutation but it provides precious little insight into Noah's condition, especially his feeding issues (the child in Japan was not seen in the hospital until he/she was 11 months old leading me to believe that the same feeding issues did not exist).  

So, we move forward into uncharted territory.  Literally.

Noah's MRI is being sent to a pediatric neurologist/radiologist in the Netherlands to get her expert opinion on the mysteries that lie within that scan.  We will probably have another MRI done after Noah's first birthday to see what kind of changes have occurred, if any.  I have a feeling Noah might be of interest to the scientific community, in that this mutation appears to be "new" and unresearched.  

There continue to be questions.  The deep, aching kind that make us wrestle with God and makes me weep in the shower.  The practical kind that forces us to vary our perspective on our home, our finances, our car, our time.  The medical kind that makes me thankful for our scientific backgrounds (Josh - chemistry, me - biology) so that we can understand the language the doctors speak.

What is there to do but trust?

"Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you."  Psalm 9:10

Oh, the horror.

Eye surgery

         +

Digestive issues

         +

Teething

         =

Very little sleep

Degoogled.

We are at home recovering from a very long day.

Noah has shaken off the grogginess from the sedation and lets us know from time to time that his eyes hurt.  They are definitely raw looking but not nearly as crossed.  We are slowing trying to reintroduce his stomach to food and hoping the anesthesia hasn't further confused his digestive system.  

The night ahead brings the next challenge as Noah seems somewhat attached to having us nearby.  He slept a lot this afternoon but hopefully will be exhausted enough to sleep through the night as well.  'Cause mom and dad are tired, too!