Update 4
 
Sunday, June 20, 2004
 
Weight:      16.5  pounds
 
Bailey has now been home for over a year and a lot of things have changed.  Bailey is now 18.5 months old (unadjusted) and she is doing very well.  Physically she is still a little behind but mentally she is ahead of where she should be if she were a regular (non-preemie) 18 month old.  She started crawling about two months ago but has a vocabulary of over 35 words.  She has even started to put words together to form phrases.  For example, Bailey has been able to say 'bubble' for quite some time but recently learned the word 'pop' while popping bubbles in the nursery at church.  Now she says 'pop bubble' when she wants to pop the bubbles.  Here is a list of words that Bailey can say.
 
Mom
Hello
Outside
Book
Doggy
Moon
Fish
Let's go!
Bubble
Bell (for bellybutton)
Yuck!
Beeky (for binky)
Whoa!
Dad
Bye-bye
Baba (for bottle)
Night
Kitty-kitty
Buddy (for bird)
Cheese
Bite
Here ya go!
Nana (for banana)
Shoe
Light
Uh-oh!
Hi
Up (for both up and down)
No (she also says no-no)
Duck
Ball
Hot Dog
Mine (for more)
Pop
Eye
Bum-bum (for tummy)
Buck (for bug)
Baby
Oh!

Here is a list of names that Bailey knows.

Katie (Aunt)
Poppa (for grandpa)
Stacey (Friends' Mom)
Max (Aunt's Cat)
Anna (Cousin)
Tyson (Friend)
Sydney (Aunt)
Jesus
Bradly (Cousin)
Will (Friend)
Sara (Aunt)
 

Some of Bailey's favorite songs to sing are The Itsy Bitsy Spider and Patty Cake.  If you sing them to her she will do the motions.  Her favorite motion from The Itsy Bitsy Spider is 'out came the sun' when she reaches high over her head.  Her favorite motion from Patty Cake is clapping.  Her favorite songs to have sung to her are Baby's Boat, I Know You (from Disney's Sleeping Beauty), It's Amazing, Rainbow Connection, Baby Mine (from Disney's Dumbo), I am a Child of God and other children's hymns.

If you tell her to "shake it, shake it, shake it" she will shake her head from side to side.  If you sing "raise the roof" she will raise her arms up and down.  If you ask her how big the baby is she will raise here hands high above here head in response.  If you sing to here the phrase "If you are (fill in the blank) raise your hand" she will raise her hand above her head.  Bailey can also point to her nose, eyes, ears, hair, bellybutton. leg, boobies, feet. toes, bum, and hand when you ask her to.  Bailey also loves to blink her eyes at people to see if they are paying attention to her.  If you blink back she will laugh and blink at you again and again.  When she blinks her whole face gets involved.  If you ask her who has stinky feet she will put her toes in your face and laugh.

She loves to get tickled and will often start laughing as I bring my beard close to her neck or arm pit in anticipation.  She also loves to be chased around the house by me while mom is holding her and running away.  She has even started to enjoy being chased around when she is crawling on the floor and I am crawling after her.

Bailey loves being outside and gets very excited at the sight of any animal.  If she hears the words outside or bubbles she will relentlessly hound us until we take her outside.  If you are holding her and she wants to go outside she will say outside over and over.  If she doesn't get a response she will grab your chin and make you look at her as she repeats her command once again.  She uses this tactic any time she feels like she is not getting a response.  She has even crawled over to me while I was sitting on the floor to grab my chin.  I can't help but laugh.

She enjoys putting things in containers and taking them out again.  She has several buckets and blocks that she loves to do this with.  Bailey also likes pushing her toy truck with her hands while crawling on her knees.  However, Bailey really enjoys to read books.  She likes to read to herself and have books read to her.  Sometimes while she is reading or when she is playing she will sing to herself.

Bailey loves to take all of her clothes and shoes out of her closet and spread them around on the floor.  She really likes to help mom unfold all of the freshly washed and folded clothes that were once in neat piles on the floor.

She still is a good sleeper and rarely gives us any trouble when it is time for bed.  However, Bailey has developed some opinions that she has started to express in the form of small tantrums.  For example, she has decide that she is no longer going to stand without something to hold onto.  If you try and make her do so she throws her head back, arches her back and whines.

Bailey graduated into a forward facing car seat two weeks ago and enjoys the new found freedom of looking out the windows while we are driving.  She also likes being able to look at mom and dad in the front seats but doesn't like the sun in her eyes.  We enjoy the easier access to Bailey in the car but don't enjoy watching her head bobble around when she falls asleep.

Bailey went on two trips to Oregon with her mom during the last two months.  On the first trip, they drove with Stacey's sister Sydney and her 2 year old daughter, Jocelyn.  They went to Oregon because Stacey's dad had a bad fall and went into the hospital to get diagnosed with a serious heart condition.  The first picture is the last time Stacey's dad got to hold Bailey.  The second time they went to Oregon was to go stay with Stacey's sister Shelley's kids while her and her husband went on a cruise.  During this trip, Stacey's dad went back into the hospital because his condition had gotten worse.  He wasn't able to hold Bailey because he was too weak.  However, on a happier note, Bailey learned to say, "poppa" while visiting her grandpa in the hospital.  The second picture below is of Bailey enjoying a bath with her friend Tyson.  Bailey really enjoys splashing.

Stacey played soccer for Weber State University.  I always wondered how old Bailey would be before her mom had her kicking a soccer ball around. The two pictures below are proof that it only took 16 months.  Bailey will have to be a little older before I can buy her a karate uniform.

Believe it or not, Bailey already enjoys playing video games.  She sits in my lap with her own controller and intently watches the TV while pushing her own buttons.  She wouldn't even take here eyes off the TV for this picture.

These two pictures are of Bailey in her Easter dress.  I thought she looked especially cute.  She is sitting on a blanket in the first picture because at this time in her life she really didn't like grass.  She is over it now.

This is a picture of Bailey the first time she discovered she could stand up in her crib.  She didn't want to go to bed (as you can tell from the look on here face).  I had to lower the mattress in the crib shortly after this day because Stacey and I were scared that Bailey would fall out if she stood up again.

This is a picture of Bailey standing all by herself in a cute dress that her mom bought for her.  Since then she has decided that it is too much work to stand by herself and arches her back every time we attempt to make her do so.  However, when she is not paying attention she will stand next to her toys and move things from hand to hand.

In the three pictures below Bailey is wearing a shirt that her Grandma and Grandpa Strong bought for her while vacationing in Mexico.  This was also Baileys first experience with sprinklers.  She was a little hesitant at first but quickly warmed up to them.

This was Bailey's first attempt at eating a piece of licorice by herself.  She thought it was a riot.

Here is a picture of Bailey and a bag of my paintballs that she found in the closet.  So, not only will Bailey play soccer and practice Karate, she will also play paintball.  This will be one busy kid!  (I'm just kidding.  She can play whatever sports she wants.)

This is proof positive that even at a young age, with enough flattery you can get a girl to do just about anything.  Bailey continually pulled this hat off of her head until we started telling her how cute she looked.

This picture was taken on a riverbank in Northern California.  The river goes right through the beautiful Redwood Forest.  Bailey liked throwing rocks in the river.

These are pictures of Bailey and all three of us in the Redwood Forest.  Bailey also made her first trip to the beach (albeit an Oregon beach where it is too cold to get in the water) but we forgot to take any pictures.

The reason we were in Northern California and Oregon was not to go to the Redwood Forest and the beach.  We were there because Stacey's dad passed away.  There was a beautiful funeral held in his honor and he was buried in a lovely cemetery.  The pictures below were taken at the cemetery.  The second picture below is my favorite because Bailey looks so cute and her mom looks down right gorgeous.  Have you ever seen more beautiful eyes.  If you look close you can tell that Bailey got her mom's eyes.

Bailey also went swimming for the first time in a swimming pool while in Oregon for the funeral.  She had a good time although this picture doesn't really show it.

Bailey has a fascination with climbing on top of things.  Boxes, toys, or paper - it doesn't matter.  She simply likes to climb on top of them and sit.  In this picture she is sitting on top of my wakeboard. (I guess we need to add wakeboarding to the list of soccer, karate and paintball.  Again, I am just kidding!)

As I mentioned earlier, Bailey loves bubbles.  We bought a bubble gun that blows a lot of bubbles because mom and dad were tired of being lightheaded from blowing bubbles all the time.

To see Bailey in a video brushing her hair click here.

To see Bailey kicking a soccer ball click here.

To see Bailey crawling click here.

 

Update 5
 
Sunday, August 22, 2005
(Click here to go to Father's thoughts)
 
Weight:        21.5 pounds
Height:        33 inches

The following is a photo update of some of the happening in Bailey's life over since the last update a little over a year ago.  She can now count to 20.  Knows all of her ABC's including some of the sounds the letters make and can sing several songs.  She really enjoys playing make-believe with her small plastic animals and has made several friends with the kids in our new neighborhood.

This is a picture of Bailey on the 4th of July 2004.  Her mom bought her this special 4th of July dress.

The first picture below is of Bailey in one of the gardens at the Santa Barbara, California zoo on July 18, 2004.  This garden was the sight of my brother's wedding.  The second picture is of Bailey dancing with my brother at his reception that same night.  The third picture is of Bailey in a park by the ocean that was taken earlier that day before the wedding.

Bailey took swimming lessons in a "mommy and me" class during the summer of 2004.  The three pictures taken below were all taken on July 26th.  The blue slide in the second picture was one of Bailey's favorite things at swimming lessons.  We never did get her to jump from the side of the pool to her mom or dad, but she handled going under the water fairly well.  She would protest but at least she didn't cry.

This picture was taken on August 8, 2004.  This is of Bailey and her mom sitting on what will later become one of the footings for the house we were just beginning to build.

The summer of 2004 brought another trip to Shasta Lake in Northern California.  All the pictures below were taken between August 14th and the 21st.  Bailey really liked the jet ski and always wanted to be in control of the throttle.  She almost threw us both into the water once when she gunned it.  She thought it was funny.  She also really liked taking baths in a tub filled with water on the back deck of the houseboat and throwing rocks into the water from the shore.  One night while sitting on the shore throwing rocks (like in the 5th picture below) Bailey pointed into the water and started yelling "Uh-oh!"  On closer inspection I noticed she was pointing at a snake in the water swimming straight at her.  I jumped into the water and splashed it away.

This picture was taken on August 24th.  Bailey had some sort of eye infection after getting home from the lake.  For the week her eye was recovering I affectionately called her my "boxer baby."

The first picture below was taken on September 10th in what will someday become our family room.  The second picture is of Bailey and mom in what will become Bailey's bedroom window.

Bailey was a skunk for Halloween.  Her mom picked out the costume despite my skepticism about how cute Bailey would be as a skunk.  She really did make a cute skunk.  Halloween was fun this year because Bailey understood that people would give her candy if she simply asked for it while dressed in her costume.

Bailey showed a brief interest in house work.  The first picture below is of her helping me vacuum the floor on October 29th.  Although she is still afraid of the vacuum she seems to do OK if she is in control of it.  The second picture is of the first time Bailey used the toilet.  This picture was taken on November 11, 2004.  While she showed periodic interest in the toilet we didn't start pushing the potty training thing until about 10 months later.

This picture was taken on November 20, 2004.  This picture is of Bailey's room right after being painted.

The first picture below is of Bailey's birthday party.  She liked blowing out the candles and was very interested in the smoke.  The second and third pictures are of her blowing out candles (again) on her actual second birthday.  Bailey really got the hang of opening presents this year.

All the boxes in the background where from us packing up to move out of our condo and into our new house.  Bailey loved to help us pack.  She would take things out of the boxes as we would put them in.

These two pictures were taken on Christmas day 2004 in our new house.  We had just purchased a new digital video camera and took a lot of video but didn't take very many still photos.  The first photo is of Bailey being very silly.  The second is of our Christmas tree.

On March 22, 2005 Bailey's life changed forever.  She welcomed her new brother into our family.  Hayden Jack Strong was born 5 lbs. 10 ounces and was 17 inches long.  He was only 5 weeks early but was an emergency C-section because my wife had preterm labor that would not go away.  While doing the C-section the doctors found that Stacey's scar on her uterus (from Bailey's birth) had torn open an inch.  It was a good thing that the doctors took Hayden when they did and that they didn't try to make my wife wait any longer.

The first picture below is of Bailey watching movies (Toy Story 2) on a portable DVD player in her mom's hospital room.  The second picture is of Hayden.  The third and fourth pictures are of Bailey in the hospital room trying to stay entertained.  Her other method of staying entertained was to push the buttons on her moms bed making it move or calling the nurse.  Both of these results caused mom pain or bugged the hospital staff.  We tried our best to keep her away from those buttons.

This is a picture of the new family of four.  Bailey handled the whole thing very well but retaliated a little in the beginning by refusing to call Stacey "mommy."  She called Stacey's sister mommy instead and called Stacey by her first name "Stacey" for about a week.

Easter came quickly after Hayden was home from the hospital.  I was a good dad and bought all the Easter candy while mom was still in the hospital.  However, I wasn't a good mom and I didn't get Bailey cleaned up before I took the first picture below on Easter morning 2005.  As a result she kind of looks stoned.  The second picture is of Bailey helping me make rolls for our Sunday Easter dinner.

The next 4 pictures are random pictures of Bailey.  In the first picture, taken March 30th, Bailey was in bed watching TV while her mom and Hayden slept.  The second picture is of Bailey and me flying a kite on a Sunday afternoon in our un-landscaped new backyard.  This picture was taken on April 3rd.  The third picture was taken on April 10th on Hayden's blessing day.  Bailey tried to get her self dressed and got a little stuck in her shirt.  The fourth picture was taken on April 11th.  It is of Bailey doing what she had seen her mom do for the past few weeks.  Bailey is trying to pump milk for baby Hayden.

May 8th, hot tub'n with brother Hayden in the kitchen sink.

May 12th, mom straightened Bailey's hair just for fun.  Then she got worried it would never be curly again.  In the second picture Bailey had her first chance to feed Hayden a bottle.  Hayden was mostly breast fed but was bottle fed once in while if circumstance necessitated it.

May 16th, reading in her room.  Bailey loves books and is one of the only kids I know who can figure out ways to tear pages from those cardboard "chunky" kids books.

May 18th, Bailey's new neighborhood friends.  They are all sisters that live right behind us and they all love Bailey.

May 23rd, Bailey goes for her first ride with her dad in the Jeep with no doors and no top.  She loved it and asked lots of questions about everything she saw.  She only took her sunglasses off once and then put them right back on because it was so bright.

May 29th, Bailey loves to pretend to play video games.  Here she is trying to play a game called Steel Battalion for the Xbox.  Really she is just playing with controller, but she does like to play Halo 2.  She will get in the back of the warthog and shoot (shooting from the warthog makes the controller vibrate) while I drive her around.  Sometimes she likes to be on foot just walking around shooting.  When she runs out of bullets she says, "More bullets daddy."  She laughs out loud when she accidentally throws a grenade and the TV makes a loud noise.  I think she will like games when she grows up.

June 12, 2005, Bailey and Hayden in the rocking chair.  At this point Bailey really likes Hayden.

June 26, 2005 in grandma and grandpa's backyard playing with her cousin Ethan.  Believe it or not Bailey was even able to push Ethan (albeit for short distances).

Jun 27, 2005 was Bailey's first trip to Disneyland.  I grew up in Southern California and love Disneyland.  She wasn't too sure what all the fuss was on the way there but I was really excited to take my daughter (and son) to Disneyland.  On the way home, and for the next few days, all she talked about was Disneyland.  In fact, at night she regularly asks for a story about Disneyland before she goes to bed.

The next three pictures were all taken on June 29th at the Beach in Aliso Creek, California.  We were in California for a family reunion and spent it with family (of course) in a few condos by the beach.  It was a lot of fun and Bailey liked the beach.  However, she didn't like getting sand on her hands.  This was a bit of an issue as you can imagine.  However, it was entertaining watching her try and wipe her hands clean only to get more sand on them.  Bailey also liked the "hot pool" (hot tub) at the condominium complex.

At the family reunion we had some games and prizes.  These two pictures were taken on June 30th while playing games.

July 1st was the opening day of the Sawdust Festival in Laguna Beech, California.  We used to go here as kids so we stopped on the way form Aliso Creek back to my parents house in Riverside to see the arts and crafts.  These two pictures were taken of mom and daughter at the Sawdust Festival.

We actually went back to Disneyland after getting to my parents house in Riverside.  Some of my wife's family was at Disneyland that day and they really wanted us to come to Disneyland and see them.  When they offered to pay for our tickets we no longer had any excuses (other than being dead tired) so we went.  I am glad we did.  Bailey really enjoyed going back since she new what to expect this time.  The two pictures below were taken at California Adventure.  The one of Bailey on the fish is one of my favorite pictures.  I really like the expression on her face.  She looks very proud of herself.

On July 9th we bought a toilet seat just for Bailey.  This put her in full potty-training mode.  She has done very well but she is still scared to go #2 of the toilet.  The second picture is of Bailey sunbathing by her luxury blowup pool and sun chaise.

July 30th was the day of my company party.  It was held at Lagoon in Utah.  We only went for a few hours so that Bailey could ride a few of her rides.  By now she was acting like an amusement park veteran and she really enjoyed herself.  While Lagoon is nothing compared to Disneyland, my wife and I had fun watching Bailey laugh and smile as she rode various rides in the park.  We even took a train ride past some animals and Bailey got to see a lion, a tiger, a bear, a camel and lots of Bambis (baby deer).

August 8th and Bailey is perfecting her Oreo and milk eating techniques.

August 12th and Bailey decided to climb into the cupboard where we keep some of her toys in the family room and take a nap.  I don't know what she was thinking.  She even climbed into the top half of the cupboard.

August 22nd and we all went for a walk.  Bailey saw her first real rainbow and she found a sunflower that she said was "so pretty."  I think Bailey is so pretty.

For a short video (2.5 MB) of Bailey waving hi to her new brother Hayden through the hospital nursery window click here.

For a short video (2.0 MB) of Bailey getting tired of holding Hayden click here.

There is no word yet on Bailey's glasses.  She may not need them.  However we will most likely find out for sure sometime during the next 12 months.  Bailey stopped seeing an occupational therapist in December of 2004 (when we moved) and she is doing very well.  While her muscle tone is low and she doesn't like things that require her to use a lot of muscle to feel safe (like a trampoline) she is very bright and talks all the time.  I am excited to see what the next year will bring for her.

P.S. I just threw away almost all of the 1000 Tylenol tablets that we had to buy at Costco the day before Bailey was born.  They expired this month.  We have come a long way since then.

 

Update 5 1/2
 
Friday, September 9, 2005
 
Bailey went to the NICU follow-up clinic today.  I was not able to attend but my wife said it was a good experience.  Bailey hasn't attended one of these clinics for over a year and it was a good reminder of just how blessed we are that Bailey has no visible signs of being premature and no behavioral, learning, or physical problems either.  There were many kids there that were less premature than Bailey and that weighed more than she did that have some or many of the problems I just mentioned.  We are extremely blessed that Bailey is problem free.  She might need glasses, but so do many other "normal" people in the world.
 
All of the doctors and psychologists that met with Bailey were amazed that she has no signs of being premature.  In fact, Bailey is advanced in many respects.  The area in which she is most advanced is in speech.  She tested at 3 years 11 months.  Because the doctors compare her to her adjusted age of 2.5 years the doctors concluded that Bailey is 1.5 years ahead of any normal child's speech at her age.  Speech is one of the strongest indicators of intelligence.
 
Anyone that knows Bailey knows she loves to talk.  She talks all the time and talks very clearly.  She understands questions like why?  She understands actions and consequences (like when she gets put in timeout and we make her explain to use why she is in trouble).  She is truly amazing.  She is a miracle.
 
When you think of all the things that have to happen just right in order for a child to grow and mature "normally" they are all miracles.  When you think of all the things that have to happen for a child to grow and mature with problems or special needs it is still amazing.  We all have a purpose here on earth and each of us has our own challenges.  We are all miracles.  It is just another testament of God's divine presence and his plan for all of us.
 
 
Update 6.0
 
Sunday, March  12, 2006
 
Bailey had an appointment with an ENT on Monday, February 27, 2006.  Stacey was concerned about her stridor and wheezing although it has never slowed her down.  We have asked her pediatrician in the past about it and he said not to worry unless it affects Bailey.  However, he also said to take her to see an ENT if we were worried.
 
At the appointment the ENT said there might be something to be concerned about but that he would like to schedule her a time to come in to the Provo Surgical Center where he could put her under and look at her throat for an extended period of time.  That appointment took place last Monday, March 6, 2006.  The initial prognosis was not good.  The doctor is worried about subglottic stenosis.  In terms of Bailey's condition, as she grows her body's demand for oxygen increases just as any growing child's body does.  In a normal child the airway also increase as the body grows to allow for more oxygen flow with each breath.  However, because of the damage to Bailey's throat caused by the tubes of her breathing machines during her time in the NICU she has a ring of scar tissue that is not allowing proper flow of oxygen.  Because of this she wheezes when she play hard.  These symptoms are sometimes called stridor.  Stridor is a symptom not a condition.
 
The doctor sent the video of Bailey's throat off to a colleague of his and asked him to look at it.  In short, Bailey has another appointment with another doctor this Thursday, March 14, 2006 at Primary Children's Hospital.  After this appointment we should know what the course of action will be.  In the worst case, Bailey will require surgery.  The surgery would require her neck to be opened up and the ring of scar tissue to be cut in two equal haves.  Those haves would then be filled with cartilage from her ear or ribs.  she would be kept in ICU for 7-10 days after completely seated so that the cartilage could bond in place.  The best case (or worse case depending on your view point) is that we simply wait and see what happens.  The problem could fix itself.
 
Hopes and prayers are always welcome.  If surgery is required this would be considered a major surgery.  We thought we were out of woods with Bailey. I guess we were wrong.
 
Also, when it rains it pours.  Hayden fell down our stairs Friday night.  He has a buckle fracture above his right wrist and above his left knee.  X-rays and a CAT scan showed his head and neck are fine.
 
Bailey's eyes (the one thing we were planning on dealing with) seem to be just fine.

 

Update 6.1
 
Sunday, March  19, 2006
(Click here to go to Father's thoughts)

Bailey's appointment this past Thursday didn't bring the news we were hoping for.  We were hoping that the doctor at Primary Children's Hospital would tell us she would grow out of her Subglottic Stenosis.  Instead he told us that Bailey's airway is no bigger now than when she was born.  Her airway is only 4 mm in diameter.  To give you an idea of what it would be like to have a 4 mm diameter airway, take a drinking straw (not the big kind you get from the quicky-mart for a Big Gulp) and try breathing through it for an hour or two.  You can do it, but it is hard and takes a lot of effort.

When the doctor recommended surgery I wanted to do it as soon as possible, Stacey wanted to wait so she would have time to prepare, and the doctor wanted to wait until after the end of RSV season (April 15th) to make sure that Bailey will not catch RSV while she is recovering.  To complicate scheduling further Bailey will need to stay in Utah for 6-8 weeks after the surgery.  We have a wedding on May 20th, another on July 22nd, and a family vacation from July 23-29.  When you overlay that with the doctors surgery schedule it looks like May 30th with be the day she goes in for surgery.  This should accommodate everyone's schedule but when push comes to shove we will do what is best for Bailey.

The doctor will graft cartilage from Bailey's ribs to her trachea.  She will be under general anesthesia for 3-4 days after the surgery in the ICU and then stay in the ICU for another 3-4 days after that.  If all goes well she will only have a one inch scar on her throat and a 2.5 inch scar on her chest under her right breast.  Complications (ruling out death) range from damage to the vocal cords to the need to have a tracheotomy.  She may have to have the surgery repeated when she is older but the doctor said that in Bailey's case this is not likely.

The doctor told us that on a scale of one to four (four being the worst) Bailey's case of Subglottic Stenosis is a two.  The doctor that will perform the surgery, the same doctor that Bailey saw on Thursday, has done over 200 of these surgeries before.  He was a resident under Dr. Robin Cotton, one of the pioneers of this procedure, for a year a number a years ago.  We feel like he will do a good job.

We are not looking forward to this experience, but we are anxious to get it done.  I have noticed Bailey's breathing a lot more in the past week than I ever have before.  It sounds painful.  I will sleep better at night once we have put this all behind us.

 

Update 6.2
 
Tuesday, March  21, 2006

The hospital confirmed today that the surgery would be on May 30th.  Now we have a firm date and we can begin to prepare ourselves.

 

Update 6.3
 
Sunday, May  7, 2006

My sister has been staying with us for a few days since it is the end of the semester and she hasn't flown home yet.  As a result, Bailey has been sleeping in our room.  I never noticed how bad her breathing was until she started sleeping with us.  I thought it was bad during the day, but it is twice as bad at night.

I can distinctly remember this past Sunday night getting into bed and lying there, listening to her breath.  Breathing while you sleep is usually a gentle thing... hardly noticeable.  Not for Bailey.  Her little body worked so hard for every breath!  Lying there for an hour or more listening to her in the middle of the night brought back many memories of her time in the NICU listening to the machines breathing for her.  When I went to wake my wife to ask her if Bailey's breathing worried her I found that I wasn't the only one who couldn't sleep because of worry.

We called the doctor and on Tuesday night they dropped off a SAT monitor and an oxygen concentrator.  Bailey wore the monitor all night on Tuesday night.  It was set to alarm if her saturation dropped below 90.  It never did.  We don't have the results of the entire study back yet, but we still have the oxygen consecrator here just in case we need it.  However, we don't have the SAT monitor.  I am not sure if I should sit by her bed all night and listen incase she can't breath or what.  It will be a relief to have the surgery done with.

We are taking advantage of the concentrator while we have it.  We are getting her used to wearing a cannula so that she will be ready for the hospital in three weeks.  She wears it for about 1 minute each night before she goes to bed.  The first try was rough.  We are now on night 4 and she is doing much better.  However, she says the oxygen smells bad.  I hope that the smell of the oxygen is all we have to worry about on the day of the surgery.

 

Update 6.4
 
Wednesday, May  24, 2006

Today was slightly emotional.  We took a tour of Primary Children's Hospital.  It was mostly to help Bailey get used to the idea of being in the hospital; so that she could get used to the environment.  To tell you the truth I don't think that Bailey has any problems with the upcoming surgery.  She tells people all the time that she is going in to have surgery.  It is actually kind of funny.  She will drop it into casual conversations with adults and children and neither the adults nor the children know how to react.  She has even bee caught yelling it to friends at the other side of the park.  I just hope she is as enthusiastic on the day of the surgery.  Just 6 more days.

Bailey handled it well. She was practically giving the tour by herself.  She would point things out to everyone as we walked form room to room. She would say things like, "That is where the gloves are," pointing to a box a gloves on the wall near the door.  Or, "Those are the beds," pointing to the hospital beds.  All of the nurses thought she was really funny.  I was handling it well until we walked to the pediatric ICU where Bailey will kept under general anesthesia for 5 days after the surgery.  It brought back many memories.  Some good and some bad, but mostly a lot of worry.  I am really looking forward to starting the ball rolling and putting this behind us as soon as possible.  I am looking forward to Tuesday.

 

Update 6.5
 
Friday, May  26, 2006

The hospital called today to tell us Bailey's surgery has been postponed for two weeks.   June 9th will be the new date.  They told us that there are not any beds in the ICU for her to recover in so we would have to wait.  They also told us that the chance of her getting bumped again are extremely low.  So... we will change flights of relatives coming to help, switch work schedules, put vacation plans up in the air, and hunker down for June 9th.

These things are just part of life.  We simple have to roll with it.

 

Update 6.6
 
Thursday, June  8, 2006

The hospital called today.  The instructions were no food after midnight, only clear liquids in the morning, no liquids after 7:45 AM, and be at the hospital by 9:15 AM.  surgery will begin at 10:45 AM tomorrow morning.  Surgery will take 4 hours.  She will be under general anesthesia for four to five days followed by four to five more days in the hospital.

This is all feeling very real.  I have had quite a bit of anxiety today.  There will be lots of prayers said tonight on Bailey's behalf.

 

Update 6.7
 
Friday, June  9, 2006
(Click here to go to Father's thoughts)
 
We left the house at 8:30 AM this morning.  We were running behind but it was OK.  It was more important to me that Bailey was comfortable and not too anxious about the day.  We arrived a few minutes late at about 9:20 AM and checked in.  Bailey had a lot of fun playing with me in the waiting room while mom filled out all kinds of paper work.  She especially liked the table shown in the second picture below where you use magnets to make things move.  She was also very proud of her new Dinosaur PJs.
 

Bailey weighed in at 10.6 Kg   I think she was a little spooked by all the attention because she didn't want to let the nurse take her temperature.  After a short demonstration from mommy she allowed it to happen.  We then changed her into hospital PJs.  She thought it was funny that the back of her new PJs were open.  At this point a nurse came in and told us that Bailey's surgery had been pushed back because of an emergency surgery for another child.  She said that if all went well that Bailey would be in for surgery at noon.  (Part of me panicked and picture us being sent home to come back another day but I quickly got a hold of myself.)  She then lead us from a small examination room into the pre-op waiting room where we watched  the end of Madagascar.  A nurse came over with a doll and gave Bailey markers to draw a face and other things on the doll.  Bailey had a good time decorating her doll, her hands and even got some marker on her nose.

As noon approached another nurse came over to give Bailey some Versed so that she would be calm at the time she had to leave mom and dad and go with the doctors.  She didn't cooperate.  I wished she had already had some versed to help her be calm about getting this Versed.  It is hard to go through this type of thing as a parent.  You don't want her to be scared and you want her to have a good experience.  You don't want to force anything.  However, sometimes it is hard to explain things to a 3 year old.  After a few minutes of fighting us she gave in and let us give her the medicine.  Of course she then wanted a drink of water, but we couldn't give her anything to drink.  I wiped her tongue with a tissue.  About five minutes later Bailey's head started bobbing around and she was looking at her hands with a funny look on her face... the Versed started to kick in.  she got very cuddly which was kind of nice.

The surgeon and anesthesiologist came over to talk to us right about noon.  Things were starting to move at a surreal pace.  The doctors would talk but nothing would register for a few minutes.  I was trying to pay attention to my daughter sitting in my lap, listen to their explanations, read my wife's face and prepare myself for the surgery all at the same time.  However, when the doctor mentioned a possible tracheotomy it immediately registered and my heart sank.  If a trach was necessary it would have to be in for three weeks.  During that time Bailey would not be able to talk and there were possibilities of other complications. 

My head was spinning and my wife was obviously concerned.  We thought we had asked all these questions ahead of time and that we were fully prepared for the surgery.  Now they were talking about things like tracheotomies, vocal cord damage, voice change, leaving her intubated for a week, and other things.  I felt a little dizzy and then it was time to say good-bye.  We sent Bailey off with the doctors along with her blanket, "big mommy dinosaur", and a kiss.  I felt like part of me just left and there was a chance I would never get it back.  Stacey and I hugged as we watched her walk through the door.

Stacey and I hadn't had anything to eat all day so we checked in at the OR waiting room and went down stairs to get some food.  When we got back an hour later the OR called to give us our first update.  Everything was going well and they didn't have to do a tracheotomy.  We were relieved.  I then laid down on some chairs and ottomans to sleep for the next three hours until the surgery was done.  I was exhausted for working a 57 hour work week in just 4 days (so that I could take the day off) and I didn't sleep much the night before because of the impending surgery.  I didn't sleep much but it did feel good to rest my eyes.

Stacey took two more update calls during the next three hours.  She would then update me and call one person in her family and one in mine (so they could update everyone else).  At about 4:30 the doctor came in and told us how everything had gone.  Bailey's airway was only 3.6 mm in diameter before he started.  The size of a new born baby.  The doctor was able to open it up to a 6.0 mm diameter.  That represents an airway that is 3 times larger than before the surgery.  Bailey had a posterior clump of scare tissue and an anterior ring of tissue.  This situation would normally call for the trachea to be severed both in the front and the back and have two grafts but the doctor decided against it.  The success rate of the surgery goes down when the trachea is cut in two places.  Instead he was able to remove the clump and only cut the trachea once.  He was also able to position the graft in such a way that Bailey should still be able to sing.  I was very happy to hear this.  I had no idea that her voice was at risk.  Bailey loves to sing and singing has brought a lot of joy into my life.  I would like her to have the same opportunity.  It looks like she will.

Some of you may remember the eye surgery that Bailey had when she was in the NICU on February 11, 2003 (Week 11).  During that surgery they gave her Pavulan which should have made it impossible for her to breath on her own.  They gave her the maximum dosage and she kept right on breathing.  She did the same thing again today.  When the surgery was done they gave her a dosage of Rocuronium which should have kept Bailey out cold for 45 minutes while she was being transferred to the PICU and while they set her up on all of her machines.  It lasted only 7 minutes.  After 7 minutes she woke up and looked at the doctor.  He was very surprised and told her that her surgery was over and that her parents were coming to see her.  He told her to go back to sleep.  That is exactly what she did right after trying to pull her breathing tubes out of her throat.  Despite the fact that she is on Fentanyl, Vecuronium and Versed she still moves her arms and legs.  As a result she is in restraints.

The PICU doctor removed Bailey's NG tube (her feeding tube that goes from her nose to her stomach) that was put in after surgery, and replaced it with an NJ tube (a tube that goes from her nose directly to her intestine.  The doctor didn't want any chance of Bailey vomiting and causing problems with her recovery.

The pictures below may look akin to Bailey's NICU days.  Except this time it doesn't look like a bunch of tubes running to a tiny little child and she is in a PICU.  Bailey is much bigger now.  I only wish that her being bigger would make it easier on the parents.  It doesn't.  In the first picture you can see the bandage on her chest where the bone was harvested.  It is very swollen.  The bandage around her neck covers her other scare.

Bailey will have a scope done on Tuesday or Wednesday next week.  At that time they will decide if she can be extubated.  Until then she will be more or less paralyzed.  It will be a long 4 or 5 days.

 

Update 6.8
 
Saturday, June  10, 2006

Stacey stayed with Bailey on Friday night and most of the day Saturday.  During their time together Stacey got a chance to see just how poorly Bailey's medications were working.  Just to review, Bailey was getting a pain killer (Fentanyl), a paralytic (Vecuronium) and a sedative (Versed).  She should have been out cold with no movement what-so-ever.

At about 6:30 in the morning Bailey was quite agitated.  After a short discussion the doctor decided to change Bailey's pain killer to Morphine.  This helped calm Bailey just in time for shift change.  During shift changes (7-8 AM and 7-8 PM) all parents have to leave so that the nurses and doctors can discuss patients freely without violating any privacy rules.  When Stacey returned at 8:00 AM Bailey heard her voice she started moving her arms and legs.  When Stacey went over to her, Bailey opened her eyes a tiny sliver and tried to reach for Stacey.  Because her arms are restrained she could only lift them a few inches off the bed.  Bailey had tears rolling down her cheeks and Stacey tried to calm her down.  While Stacey was talking to her to try and get her to calm down Bailey started answering questions.  Stacey asked Bailey to squeeze her hand if she could hear her and she did.  Stacey would ask her yes and no questions and Bailey would either nod or shake her head.  Stacey eventually got Bailey to calm down.

Every two hours they have to move Bailey to help reduce the risk of bed sores and pneumonia.  That meant that every two hours Bailey would wake up and cry some more.  She would wake up and cry when she heard the little boy next to her cry.  At about mid day they changed Bailey's paralytic from Vecuronium to Cisatracium.  They also started giving her large doses of Morphine a few minutes before moving her.  This seemed to help.

The doctor came by and removed the tube in the incision in Bailey's chest.  It was there to help the wound drain and the doctor said it was no longer necessary.

When I got to the hospital on Saturday afternoon I approached Bailey's bed and talked to her a little bit.  She would nod when I asked her if she wanted me to sing to her and shake her head when I would tell her she should go back to sleep.  It was wonderful to interact with her, but I also knew she was in a lot of pain.  I asked her if she had an owie on her neck and she would nod and cry.  I asked her if she had an owie on her chest and she would nod.  I asked her if she had an owie on her toe and she would shake her head.  She knew what was going on.  She would even shake her head if I started to sing a song she didn't want to hear.  She cried a little form time to time and would open her eyes to see if I was near her. 

Bailey's temperature was up to 104° F last by about 11:00 PM.  The nurse was  switching between giving her Tylenol or Motrin every few hours to help the fever come down.  They decided to not do a blood and urine culture to see if Bailey was developing any kind of sickness.  I don't understand why.  Maybe they will do one tomorrow.  The doctors and nurses do not seem too concerned about the fever so I will try my best to not let it bother me.

It was my turn to stay with Bailey for the night.  Because of the circumstances it was difficult to leave her bed side to go to sleep for the night.  However, her fever did start to dome down by about 11:30 PM.  I left about 12:30 but didn't fall asleep until about 2:00 AM.  I knew she was safe, but I didn't want her to be in pain.  The nurses all say that she won't remember any of this because of the versed, but they also say she shouldn't be able to answer questions either.  It breaks my heart to think that she might be in pain.

 

Update 6.9
 
Sunday, June  11, 2006

Sunday morning was quiet.  Bailey slept most of the morning so I slept by her bed side in a chair.  I would get up to help when she was moved and to make sure that she was quickly calmed by singing her back to sleep.  Her fever was now under control and I was feeling better about things.  They doctor also decided to do a blood and urine culture.  It will be 48 hours before they can call it negative (if they can call it negative) but they can begin treating Bailey as soon as something appears (if something appears).

A doctor came by around noon and removed the drainage tube in Bailey's neck.  He said the wound looked good and that it was healing well.  The surgeon came in about an hour later and said everything looked good.  He said that he would most likely scope Bailey on Tuesday evening at 5:00 PM.  That means that she could be fully awake by Tuesday night.  I am really looking forward to holding her in my arms and giving her a big hug.

The early afternoon was a little rough for Bailey.  She started to cry again so I tried my best to comfort her.  She tried to reach for me but her hands were tied to the bed so I held her hands.  I asked her if she was scared and she nodded followed by big tears in each eye.  Her body appeared to be convulsing from some agitation or discomfort.  I sang to her and watched her heart rate to see when she was calm and most likely asleep.  When I thought that she was asleep I would try to pull my hands away only to have her squeeze my fingers and not let go.  Her heart rate would then go back up and I would sing to her until her heart rate dropped.  This cycle went on for about 3 hours.  I was happy I could be there for her but I was also happy when she finally fell asleep and didn't need me anymore.  It meant she wasn't in any discomfort.

Bailey's discomfort was being caused by thick secretions in her lungs.  Because of the tube in her throat she was unable to cough or clear her throat.  Instead her body would appear as though it was convulsing.  Kind of like if you tired to cough and sneeze while plugging your nose and covering your mouth.  It was horrible sight.  The nurses would suction her lungs from time to time (which also caused Bailey a lot of discomfort) but eventually lead to her not having to cough anymore.

Stacey and my mom arrived at the hospital Sunday evening.  Bailey was happy to see her mom and her grandma.  I was happy to see my wife, son and mom.  Hayden, my son, has been a good sport so far.  I hope he can hang in there until it is all over.

Stacey stayed with Bailey through the night.  Bailey had a new nurse that we hadn't had any interaction with until last night.  For whatever reason she didn't want to give Bailey a dose of Morphine before she moved her the first time.  As a result it took Bailey an hour to calm down.  The second time she moved her she changed her mind and gave her a dose of Morphine.

No news from the culture yet and Bailey's temperature is still responding well to medication.  Stacey asked Bailey if she had an owie on her neck and chest and Bailey shook her head no.  I hope this is a sign that the morphine is working better or that her pain is going away.  I think more than anything she just wants to sit up and be held.  The next day and a half are going to go by slowly.

A doctor came by last night and mentioned that the dosages of medicine that Bailey is receiving would make any grown adult sick.  Maybe Bailey's new nick name should be "Super Liver" or "Liver Girl."  Tuesday night can't come soon enough.

 

Update 6.10
 
Monday, June  12, 2006

Today was quiet..  Bailey is doing well without much change.  The doctor changed some of her medications which helped her rest better.  As I mentioned previously, they were giving Bailey a boost (boost = bolus) of meds every time they moved her.  This meant that she was getting a bolus every 2 hours.  Today they started giving her a bolus of Adavant every hour and increased her pain killer and paralytic.  She is resting much better now with less thrashing. 

Bailey's fever started to go back up.  I peaked around 103° F but responded to Tylenol and Motrin and returned to a normal level by the end of the day.

Bailey has been getting Miralax (a stool softener) but she still hasn't had a bowl movement.  They started to give her  fiber and water in her Pediasure feedings but there is still no change.  They gave her a glycerin suppository last night but she pushed it out an hour later.  The stool in her intestine is not hard so the doctor is not worried yet.  Stacey spent some time massaging the intestine but still no change.  According to the hospitals "poop protocol" the next step will be an enema.

Bailey has been coughing less.  However her secretions have increased.  Every now and then Bailey's oxygen saturation will drop to 87-88%.  It goes back up to 100% with a quick suctioning of her lungs but I would prefer that it stayed at 100 and didn't require any suctioning.  Suctioning is a VERY uncomfortable thing to have done to you.  It is like someone sucking all the oxygen out of your lungs in the middle of a breath.  Tuesday can't come soon enough.

Things are still on track for tomorrow at 5:00 PM.  They will start to reduce Bailey's paralytic tomorrow morning.  She will get a steroid at 5:00 AM and another at 11:00 AM to help the swelling go down in her throat.  Bailey needs to be breathing on her own before she can get the scope.  I don't really like the idea of her not being on a paralytic but it is the way it has to be.  I just hope she takes it well and doesn't thrash too much.  That would be hard to watch.

Hayden stood up for the first time yesterday all by himself.  Both my wife and I miss him but we are glad that my mom is here to watch him.  I just hope he doesn't miss us too much.

 

Update 6.11
 
Tuesday, June  13, 2006

They had to put earplugs in Bailey's ears last night because she kept waking up at every little noise.

The culture came back negative but Bailey is still on antibiotics.  She got her first dose of steroids this morning at 5:00 AM.  I arrived shortly after her second dose at 11:00 AM after a very long day of work that basically started on Monday and ended on Tuesday morning.  I was beat but I really wanted to see Bailey.  I felt bad that I didn't see her at all on Monday.  Stacey went home shortly there after I arrived to spend some time with Hayden and still get back to the hospital by 5:00 PM for the scope.

From noon until 5:00 PM things were slow.  Bailey slept and I was able to get some more work done.  As 5:00 PM approached I was getting excited.  I helped the nurses prepare Bailey for the scope by clearing off her bed so that she could be easily moved from the PICU to the OR and back again.  Before I knew it my wife arrived and we were following our daughter to the OR.  Once she was in the OR we went to the OR waiting room to await the results.  Stacey read her book and I started to play a video game.  Before we knew it the surgeon was there to tell us that he was done and give us the news.

Everything looked very good.  Bailey's airway was healing nicely and there were no air leaks around the new cartilage.  The surgeon said that things couldn't have look better.  We were very much relieved and looking forward to Bailey being extubated so that we could hold her.  At this point we shook the hand of the surgeon, thanked him and hurried back to the PICU to see Bailey.  Bailey left the OR after her scope with a smaller tube in her throat than she had when she went in.  Because this new tube was slightly smaller in diameter than Bailey's throat, air was able to leak past up Bailey's throat with out going through the tube. This was done by design to allow air to pass by the sight of the new cartilage to see if it would leak around the sight of the incision..

The plan had always been to monitor Bailey for about 12 hours and then slowly reduce her meds until she could be extubated.  By the time we got to Bailey's bed side the plan had changed to stopping her meds immediately and extubating her at 7:00 PM.  I was excited and scared.

At 7:15 PM Bailey was extubated and off her meds.  She was breathing fine on her own with the help of a nasal cannula and sleeping well.  Stacey went to get some dinner while I took the first watch.  While she was gone Bailey got a little upset so I decided to hold her and sing to her.  This brought back memories of the NICU.  It felt great to hold her in my arms.  I hadn't been able to do more than hold her hand and kiss her forehead for 5 days.  When Stacey got back she held Bailey and I got some dinner.  It was really good to see Bailey's face.

The nurse brought Bailey a TV and VCR.  After throwing up on mom and the blanket Bailey settled down to watch Bambi.  Bailey smiled twice during Bambi at the owl during the "twitter-pated" scene when he gets mad at the other birds.  It was really good to see her smile.  I worked while Bailey watched movies and played a video game while Bailey slept.  From time to time she would try to talk but her voice was too hoarse to understand.  Stacey left at about 11:30 PM and I was looking forward to a quiet night with my daughter that I could now sing to and hold if she was upset.

 

Update 6.12
 
Wednesday, June  14, 2006

Last night and today have been awful.  At about 1:00 AM last night, right before I was going to leave Bailey's bed side to go sleep on a couch in the PICU Parent's Lounge, Bailey wasn't feeling well.  She was quite agitated and pulling at all of the tubes in her arm, leg and nose.  I held her and sang to her.  She threw up on me and I changed my shirt.  Since I had to put her down to change my shirt the nurse and I decided to see if we could make her comfortable on the bed.  Bailey squirmed and scratched at her arms, while pulling at her clothes and tubes.  We had to restrain Bailey's left arm and put Bailey's right arm in a "No No" restraint to keep her from pulling all of her tubes out.  A "No No" restraint is like a tube that won't allow a child to bend their elbow making it impossible for them to touch their face and making it difficult for them to grab at their other arm or legs.

Bailey threw up again and was able to work her right arm free of the restraint.  She kept wiping her tongue with a blanket and I tried to get her to drink something.  She wouldn't drink anything.  Bailey was writhing with discomfort.  She couldn't keep still and wasn't really all there.  I sang to her and held her hand.  At about 2:00 AM Bailey had a huge bowel movement.  It was very liquid and required a bed change.

The Nurse and I changed the bed and Bailey.  Bailey was still visibly uncomfortable and sweating.  The nurse gave Bailey some Tylenol through her NJ tube and I decided to try and hold her again.  I sang to her until she fell asleep.  Then, before I knew what was happening, Bailey pulled the NJ tube out of her nose.  The Nurse just decide to take the whole thing out.  Bailey fell asleep for a little while and I sang to her.  At 3:00 AM Bailey woke up again with much discomfort and sweating from a fever.  I sang to her some more and she threw up on my last shirt.  I cleaned it up as best I could without getting out of my chair or putting Bailey down.  For the next 5 hours Bailey would wake up, writhe with discomfort for about 30 minutes, start to calm down for 15 minutes, sleep for 15 minutes, and then wake up right as I was about to fall asleep and start the whole thing over again.  She would cry and pull at things and wipe her tongue on the blanket.  She started grinding her teeth and chewing on her tongue.  She pooped a little more during the night but it wasn't enough to disrupt her to change her.  However, I never got used to the smell.

At about 5:00 AM I thought I was going to die I was so tired.  At 8:00 AM when I thought I just couldn't handle it anymore (I had only had about 3 hours of sleep in the past 48 hours) I called my wife to ask her to hurry to the hospital.  I wasn't sure I could continue without some relief and needed to hear her say that she was on her way.  She said she would come as soon as she could get ready.

Sometime during the night or early morning Bailey was given a bolus of Adavant to help calm her.  Instead of making her calm it made her even more agitated.  This was the same reaction Stacey had to Adavant when she was in the ICU after Bailey was born.  When I asked why all the previous dosages of Adavant didn't have the same effect on Bailey (she had been on an Adavant drip for the past few days) the response was that the other narcotics (especially the paralytic) prevented Bailey from thrashing around.  This made me feel really sad for Bailey.

At this point (8:30 AM) Bailey needed more Tylenol.  Because she no longer had an NJ or NG tube she would have to swallow it.  I knew this would be hard because she still wasn't drinking much.  Up to this point she had only had a few tiny sips of apple juice.  The first attempt ended with the Tylenol being spit into the nurse's hand.  I was holding Bailey's head while the nurse held her hands.  The second attempt went better because the nurse wedged the syringe in Bailey's teeth so she couldn't close her mouth and spit.  Bailey drank all of the Tylenol but struggled so hard that she pooped.  She pooped a lot!  It was all over the floor, all over the chair and all over me. Sometime during the whole struggle and pooping thing Bailey won the battle with the cannula and the nurse took it off of Bailey completely.

I helped the nurse clean Bailey up and then asked if I could borrow a shirt from the hospital.  I hurried and showered and changed my clothes (PJ bottoms and a borrowed baby blue t-shirt).  When  I got back to Bailey's bed they were all ready to move Bailey up to a private room on the 3rd floor general recovery wing of the hospital.  Before going, the ENT doctor assured me that Bailey was still looking great and that she still didn't have any leaks in her throat. I grabbed my stuff and followed the nurse to Bailey's new room.  My wife arrived shortly there after.

Bailey's new nurse removed the central line from Bailey's right arm which made Bailey happy.  Stacey and I spent the afternoon trying to get Bailey to eat, drink and feel comfortable.  Despite our efforts Bailey was in her own world.  She arched her back, and held her hands and legs in the air because she didn't want anything touching them.  Also, sometimes she would cry when we talked to her as if she was being over stimulated.  We tried to give Bailey more Tylenol but she spit it out three times.  This ended up with Bailey receiving a Tylenol suppository and a new NG tube (for future doses) with a "pull proof" tape job on that NG tube by me.

During Bailey's worst episode of arching and tremors the only way I could make contact with her was to sing her favorite songs.  She would sing along with me.  It was through a strained voice and much discomfort but I felt like I was making a connection to her.  It seemed to calm her.

The ENT doctor came back to visit and said that Bailey was displaying classic signs of narcotics withdrawal.  He called the body writhing posturing.  He called the shaking tremors.  In addition, Bailey was sweaty and she was babbling nonsense at a fast yet constant pace.  I would ask her a question and she wouldn't even hear me.  It was heart breaking.  The doctor prescribed her Lortab to help reduce these symptoms.  Bailey got her first dosage of Lortab as I was leaving.  The doctor said it would be 1-3 days before the withdrawal symptoms subside

I warned my wife that she had a rough night ahead and told her to call at anytime if she felt like she couldn't do it anymore or that she needed someone to talk to.  I left right after giving Bailey a blessing at about 7:00 PM to get home and play with my son Hayden before putting him to bed.  I can hardly wait until Bailey is home playing with Hayden again.

Please pray for not only Bailey but for my wife and I as well.  We are doing a lot of driving and getting very little sleep.  We could use some divine protection ourselves.

 

Update 6.13
 
Thursday, June  15, 2006

Stacey said that Bailey didn't sleep at all last night .  She slept for maybe 15 minutes a few different times during the night. But that was it.  Stacey slept with Bailey all night in her bed.

Thursday brought more of the same.  No eating.  No sleeping.  She spent the day contorted and babbling.  It is nothing that either my wife or I were prepared for.  She found some relief at about 4:00 PM when she finally fell asleep for about 45 minutes.  She was still getting Lortab but it didn't seem to do any good.

I arrived back at the hospital at about 7:00 PM.  Bailey looked the same as she had since the time they took her off the drugs.  She was still posturing and experiencing tremors.  When I arrived she was babbling to herself without any stream of thought.  I put Bailey's favorite movie (Toy Story 2) in the DVD player and hit play.  She stopped for a moment and watched for a few minutes.  She then got a huge smile on her face and got really excited.  She pointed at the TV and looked around the room to see if we were all watching.  She mumbled something.  As best as I could tell she was very excited to watch her favorite movie and she wanted to make sure that everyone else knew it.  It was nice to see her make a connection with something.

Stacey left shortly there after and I settled in for the night.  We watched Bambi and Toy Story 2 back to back to back to back for several hours.  During that time I would work at her bed side on my computer.  I would stop to try and hold her when she was upset.  I wanted to hold her all night while she slept but she couldn't handle it.  As a result I resigned myself to only helping comfort her when she was upset.  I am not sure I was even effective at that.  I would also change her bum and help the nurse check her vitals.  Every time the nurse would walk into the room Bailey would literally try to climb out of her bed to get away.  It was very sad.  I wish I could explain things to her but she simply isn't herself.

At about 3:30 AM Bailey was still going strong but I was tired.  I laid down next to her for a bit and then laid down on the "oh so comfortable" foldout hospital chair.  As I retired to the bed/chair I turned the hospital cartoon channel on. 

Bailey is not herself and Stacey and I are really starting to worry.  I was prepared to handle Bailey's pain.  I was ready to comfort her and hold her.  I was even looking forward to being there for her so that I could be a "dad."  I was not ready to look at a child that doesn't know who I am.  A child that pushes me away when I try to comfort her.  I was not ready to worry about my daughter's mental health.  I hope she hasn't experienced any permanent damage.  I am really worried for her.  I hope she fully recovers.  I hope she doesn't remember any of this.

 

Update 6.14
 
Friday, June  16, 2006

Before I knew it was 7:30 AM and Bailey was still watching TV.  The day brought no changes.  Bailey even spent a few times in complete hysterics where all I could do was hold her down to keep her from accidentally injuring herself.  She fell asleep on my chest for about 15 minutes sometime during the afternoon which was very nice.

She spent most of the day watching Toy Story 2.  At one point I put a DVD of Dora the Explorer in and she shouted a loud NO!  I put Toy Story 2 back in and she went right back to watching.

At about 2:00 PM I was at the end of my rope so I called Stacey.  I had just left the room for 5 minutes to go get some food and I came back to find Bailey absolutely hysterical.  We were only a few hours short of the 72nd hour of the 1-3 day time frame that we were given for full recovery and Bailey was showing no change.  Stacey and I decided that we need to get a specialist involved.

I asked Bailey's nurse who we could contact and she wasn't sure.  She called the ENT resident who was off site for the afternoon.  She said he would be back to do rounds that evening and that we could talk then.  I was mad so I called Stacey back.  I just wanted to be heard as a concerned parent.  I just wanted a second opinion.  I think the nurse overheard me talking to Stacey because she came into the room shortly after I got off the phone.  She came in and said that the social worker would be bye and that the ENT resident would be by soon as well.  She came back in a few minutes later and closed the door.  She said that as one parent to another she felt like we should not back down on a second opinion if that was really what we felt like we wanted to do.  It was nice to hear some support but I had already resolved not to back down.

Stacey, Hayden and my mom arrived at about 5:00PM.  The ENT surgeon arrived shortly there after and we could hear him talking to someone on the phone at the nurse's station.  He spoke to the intensivist from the ICU and asked her to come visit Bailey in the CSU (Children's Surgical Unit) to help evaluate her.  A few minutes later the two of them were in Bailey's room.  They both commented on how bad she looked and asked how long this had been going on.  We said three days with no change.  They both agreed that 3 days was too long and that something needed to change.  I am not sure what happened to the ENT Resident or the social worker but I finally felt like we were getting somewhere.

At 6:30 PM they gave Bailey a dose of Morphine to help her with withdrawals.  At 8:00 PM she got a dose of Methadone followed by another dose to be given every 6 hours.  We should begin to see changes within the first 12 hours (after the first two doses of Methadone).  In addition, a pediatrician will be by to check on Bailey every day.  The intensivist also said that she would be happy to come back any time.

My mom, Hayden and I left at about 7:00 PM to head home.

I spoke with Stacey on the phone at about 10:00 PM.  Still no change in Bailey.  I really hope that she begins to respond by 8:00 AM tomorrow (12 hours after the first dose of Methadone) so that I can set my fears of permanent damage aside.  We are all really worried for Bailey.  She literally has not been herself for three days and she hasn't slept more than a dozen times for 15 minutes at a time for three days.  I just hope I can actually visit HER tomorrow.

Stacey called at 10:45 PM to say that Bailey was asleep.  If she sleeps for longer than 15 minutes I will feel like we are getting somewhere.

Stacey called at 11:10 PM to tell me that the pediatrician came by to see Bailey.  She said that some of the symptoms that Bailey was having were not necessarily withdrawal symptoms.  She said that if things are not dramatically better tomorrow that she would ask for a neurologist to come down and see her.  I am not sure what to make of this.  I am really worried.  I feel like things are spinning out of control.

 

Update 6.15
 
Saturday, June  17, 2006

Last night Bailey had a one minute stint of lucidity.  At about 1:30 AM she looked over at Stacey and said, "Mommy, will you sing me a song?"  Stacey sang to her and they talked for a brief moment and then she went back to her un-normal self.  I was glad Stacey could have that moment of connection.  I wish I could have been there to take part in it.

Today was a better day for Bailey.  She seemed to not have so many uncontrolled motions and generally appeared to be much calmer.  As the hospitalist (that is what they call the general pediatrician at PCMC) she appeared to be more neurologically organized.

Two neurologists came down to examine Bailey today.  They were both supportive and they thought that Bailey's symptoms might be a combination of three different things.  They said that some of her symptoms are definitely coming from withdrawals form her drugs.  They also aid that Bailey is likely suffering from trauma induced stress.  And lastly, they asked how long Bailey was intubated while she was in the NICU.  We told them 3 months.  They explained that it is also possible that Bailey's body remembered being intubated the first time and as a result her body is reacting to the second intubation from the PICU; like a physical memory (I know this isn't the right terminology for it but I can't remember the term the neurologist used).  This all made sense (and makes even more sense now that I have study some of these things out on the internet) but I wasn't exactly sure where it left us.  After much discussion we decided to continue down the path of Methadone and low trauma and see where it takes us.  This is why I was surprised to hear that the ENT resident on call wanted to put an IV back in Bailey "just incase" it was needed.

My Mom, Hayden and Stacey and I all took Bailey out of her room for a walk today.  She seemed to enjoy being out of her room but would not ride in the wagon.  Hayden rode instead.  He looked like a little king sitting in the bed of pillows we had prepared for Bailey.  Instead of riding Bailey clung very tightly to my neck the whole time.  She even fell asleep on my chest for about 30 solid minutes while I was seated in a waiting area chair.  While we sat and walked Stacey and I talked about the IV.  The reason the doctor wanted an IV was incase Bailey was to have complications with her airway they would have a fast way to give her medication.  At this point in time no one is worried about her airway.  The second reason was to make sure that she was getting enough fluids.  She was behind on her urinations and the doctor wanted to give her IV fluids.  Because the on call ENT resident didn't know Bailey's history or the neurologist's assessment of trauma induced stress we felt like we needed to explain things to him when we got back to the room.

Upon returning to the room we explained things to Bailey's nurse and she called the ENT resident.  We suggested that we give Bailey water through her NG tube along with her feedings.  He agreed and they made the change.  Bailey urinated a few hours later.  The nurse was very supportive of our advocating on Bailey's behalf.

The night wasn't too bad. Bailey fell asleep at about 11:00 PM and slept until about 5:00 AM in the morning.  She would wake every 10 minutes with her entire body jerking.  she would then sit up to make sure I was close.  After she cried for me the first time I decided I would sleep next to her in bed.  Neither of us got very good sleep but at least she was sleeping.  Sleep would go a long way to helping her recover.

 

Update 6.16
 
Sunday, June  18, 2006

Today was the first day I have seen Bailey make any progress.  We spent the morning watching shows on the TV.  I played some games with her on her Leap Frog Leap Pad and we read some books. 

The ENT resident, surgeon and hospitalist all checked on Bailey this morning.  It was kind of funny because Bailey had just finished watching Toy Story 2 for the 100th time this week when the ENT resident walked in.  Bailey pointed at him and said, "You killed my father."  From the look on his face I don't know if he had ever seen Star Wars or Toy Story 2 so I had to explain it to him.  I am not sure he thought it was funny, but I did.  What father wouldn't be proud to have their daughter recite lines form a Star Wars movie?

We took a walk at about 3:00 PM and she enjoyed it (although she clung tightly to my neck the whole time).  We sat in the kids play room for a while.  She enjoyed watching a young boy play Harry Potter on the Gamecube.  Then she wet her diaper and I had to go change her.  When I left the play room she really wanted to go back in but her diaper was REALLY full.  I told her we would be back in just a minute.  When I got to the room I tried to put her down on the bed to change her and she freaked out!  She was clawing at me.  She wanted me to hold her.  She was absolutely panic stricken when I  tried to put her down.  She was holding on so tight I could hardly breath.  I felt bad but I had to change her diaper.  Soon we were done and back in the play room.  I think she is suffering from trauma induced separation anxiety.

Bailey watched all of the kids playing and I kept her entertained by painting a plaster casting of a dinosaur.  She got a real kick out of playing an electronic drum set.  She loved hitting it with the sticks.  She got an even bigger kick out of watching some big kids play foosball.  She actually laughed really hard watching them play.  It was nice to see her smile.  When we got back to the room she wouldn't let go so I sat down on the bed with her straddling my body.  She fell asleep for a few minutes on my chest and then had a bowel movement.  Knowing that it would be mostly liquid I attempted to change her diaper.  It went about as well as the last diaper but this time she cried.  I got back in bed and held her.

At about this time her late lunch arrived.  I ordered her some ice cream and some mashed potatoes.  She had mentioned something earlier when she was babbling about mashed potatoes so I thought I would give it a try.  She ate 3/4 of a serving of mashed potatoes and a whole cup of lime sherbet ice cream.  She also drank some water.  I was very happy.  This was a wonderful fathers day gift.

She fell asleep on my chest again.  I couldn't move and I was sweating profusely because she was acting like a little heater on my chest.  Also, unfortunately for me, the only thing even remotely good on TV was Home Alone 2.  The things a parent does for their child.

Stacey arrived at the hospital at about 7:00 PM with Hayden.  My mom, sister's husband and their 2 month old all arrived shortly there after.  Bailey clung tightly to my chest and only let go when I handed her to her mother.  My brother-in-law and I gave Bailey a blessing. 

I want her home.  I think she will recover more quickly from the trauma at home.  Unfortunately the surgeon has to do another scope to make sure her throat is fine before she can go home.  That is currently scheduled for Tuesday night.  I hope it goes well and doesn't destroy any of the progress we have made so far.

I left at about 8:45PM.  Stacey is staying with Bailey tonight.  Hopefully they can both get some solid sleep.

Thank you to everyone who is praying and or thinking of Bailey and the rest of us.  It is felt and appreciated.

 

Update 6.17
 
Monday, June  19, 2006 

Bailey finally fell asleep around 11:30pm but she kept waking up every 5 – 10 minutes.  At about 1:30 AM she woke up and didn’t go back to sleep.  Stacey tried for about half an hour to get her to go back to sleep to no avail.  It would have been nice for Bailey to get a solid night sleep but at some point as a parent you have to simply accept that Bailey’s schedule is all messed up because of the hospital.  Stacey turned on the TV at about 2:00 AM so that Bailey would be entertained and then tried to get some sleep herself.  Thank heavens for Sesame Street being on in the middle of the night.  

After about 30 minutes of watching Sesame Street, Bailey surprised my wife.  Bailey said, “Mommy, will you watch Sesame Street with me?”  I wish I could have been there to hear it myself.  A real sentence.  The first one in over a week.  My wife sat up in bed and started watching with her.  After a few minutes, Bailey started talking about the elephant that was orange and hairy.  Upon realizing that Bailey was acting normal Stacey actually had a conversation with her.  While they talked, Stacey gave Bailey some water to drink and asked Bailey if she wanted some ice cream, to which Bailey said yes!  The nurse gave Bailey some ice cream and at one point when the nurse was in the room, Bailey asked her, “Hey, do you guys have Jello?”  My wife said that she and the nurse could hardly believe it.

My wife asked Bailey if she knew where she was.  After looking around the room she said, “California.”   We recently stayed in a hotel in California for my sister’s wedding.  I guess the hospital room looked like the hotel room.  I guess we either stayed in very odd looking hotel or Bailey is in a very nice hospital room.  I guess I we will never know.

Stacey read some books to Bailey while she ate some crackers.  Bailey threw up a little bit so my wife decided not to give her any more food.  After a couple of hours, Stacey was so tired that she put a movie on and tried to sleep.  At about 5:00 AM the magic started to wear off and Bailey went back into her own little world.  She climbed on Stacey and cried a little.  She finally fell asleep on Stacey at about 5:30 AM and slept until 9:00 AM.

When my wife and Bailey woke up, Bailey let Stacey sit her on the bed by herself (no separation anxiety).  Bailey again started acting normal and started a conversation.  She ate breakfast (sausage, bacon and eggs) and appeared to be just fine (although a little weak). 

My wife’s sister, Sydney, showed up around 10:30 AM and they took Bailey for a ride in the wagon.  They went downstairs to the fountains and Bailey threw pennies.  She wanted to put her feet in the fountain outside so Bailey’s aunt rolled up her pants and walked in the water w/her.  After a little while Bailey was looking tired so they took her back up to her room where she slept for a solid 3 hours.  No jerking.  No waking up.  A solid 3 hours.

When she woke up Bailey ate lunch (corndog and string cheese).  She played with Playdoh and her Leap Frog Leap Pad.  Stacey even got to give Bailey a bath in a real bath tub.  After, my wife and Bailey read some books and watched some TV.  Bailey ate a late dinner (she requested bacon, sausage and eggs) and fell asleep at 10:30 PM.

The only thing that we can figure out for the big change is that the doctor finally got the dosages of Methadone right.  She originally got a dose every 6 hours for 24 hours.  This was then changed to every 8 hours (according to protocol).  On Sunday they went back to every 6 hours.  This is promising.  However, I still worry that she will relapse after her scope tomorrow night.  I also worry that she may have a relapse when she is at home and we begin to taper the Methadone.  But for now… I am just glad my wife got to connect with Bailey on a real level.  I hope she is the same when I get to see her tomorrow.  I had a horrible day at work and was not able to go to the hospital today.  I can hardly wait to see her tomorrow.  It will be nice to have her look at me, not past me.

 

Update 6.18
 
Tuesday, June  20, 2006 

The nurse came in at 8:00 AM and Bailey was still asleep.  She brought in Bailey's breakfast because Bailey was not going to be able to eat past 8:20 AM due to the scope scheduled for the afternoon.  Bailey woke up and ate breakfast (sausage, bacon, eggs and pancakes) but then went back to sleep around 9:00 AM.  Stacey's sister and her son came by to visit.  Bailey woke up just as they were leaving at about 11:00 AM.   She didn't jerk or posture.  We were very glad to see her get solid peaceful sleep.

A little after lunch time my sister, her daughter, my mom and my son all came to visit.  While they were there Bailey went on wagon rides (with her brother Hayden).  They all went to the play room and had a good time .  While in the wagon Bailey and Hayden had their normal conversation.  Hayden would reach for Bailey’s coloring book and Bailey would yell, “NO, Hayden!”  It was nice to have Bailey back.

I arrived at the hospital at about 3:00 PM and passed the visitors on their way out of the hospital.  I guess Bailey was hitting her limit so they were leaving to allow her to be in a calm environment.  I gave Hayden a kiss and said good-bye and hurried up to Bailey's room.

When I got there Bailey was out of control.  She was tired, hungry, going through withdrawals, and suffering from a little anxiety about going back into the OR for the scope.  I tried to calm her down but it wasn't working.  I sat down and just held her for about 5 minutes.  She then went to Stacey and sobbed for a while.  A few minutes later she fell asleep and we left for the OR.  Bailey made it all the way into the OR before she woke up.  She woke up right before the surgery but the Surgeon said she handled it okay.

We checked into the OR waiting room and ran down to get some dinner.  We returned to the OR waiting room and about 15 minutes later they called our name.  I went to Bailey's bed side and Stacey went up to Bailey's room.  When Bailey came through she was upset.  I held her and she wouldn't let go.  I had to ride on the bed while they pushed both of us back to her room.

The surgeon said everything looked good.  Bailey had some inward growing scar tissue but he was able to remove it with some forceps and suction.  He said that Bailey would most likely go home tomorrow but that she would need to come back in month for another scope.

Upon returning to Bailey's room the nurses had to take vitals.  It didn't go well.  To make a long story short, Bailey pulled her IV out, she pulled her heart monitor off, and she pulled her NG tube out, even though Stacey and 2 nurses were holding her down.  Bailey's dinner came a little while later and she ate.  Stacey left a little while later and Bailey calmed down for the night.  She fell asleep at about 10:30 PM.  However, right before she went to bed she did her favorite thing.  She pushed the nurse's button and asked the nurse for a cup of chocolate ice cream.

She fell asleep right after eating her ice cream.  I slept on the foldout bed.  At about 1:00 AM she woke up crying so I moved into her bed.

 

Update 6.19
 
Wednesday, June  21, 2006 

Bailey woke up at about 9:00 AM.  She ate a huge breakfast (eggs, sausage, bacon , and French toast) and watched TV.  We played hospital BINGO on the TV at 10:00 AM and Bailey won at blackout.  The prize cart came around about 11:00 AM and Bailey's eyes got huge.  She could have chosen a mom and baby stuffed animal, stickers, magnets, and all kinds of things.  She chose a cheap bottle of Power Puff Girl nail polish that was blue with sparkles.  I painted the nails on Bailey's right hand and then she painted the nails on her left hand.  At about noon Bailey put on new PJs and we went for a wagon ride.  She wanted to go outside and play in the fountain.  We both rolled up our pants and waded in the fountain.  We then went in to share an ice cream Sunday.  At that moment I felt like my dad because I knew, after surveying the selections, that Bailey would choose bubble gum ice cream.  She did.  Just like I used to do to my dad.

When we got up stairs to Bailey's room the nurse was ready to discharge Bailey from the hospital.  I told her that Stacey was still a few minutes away so I wanted to wait.  I cleaned up all of Bailey's stuff while she watched TV and colored.  Stacey arrived and I took all of Bailey's stuff down to the car.  When I got back upstairs Stacey asked if Bailey had eaten lunch.  Oops!  I had forgotten to get her lunch.  We ordered Bailey lunch and the nurse came into discharge Bailey.  During the discussion Bailey started to melt down.  I guess it was lack of food.  Finally the food came and Bailey ate.  She was much better after that.

It took us about 45 minutes to get home.  Bailey was happy to be home and VERY happy to see her cat Ducky.  She was only mildly happy to see Hayden.

We are happy to have her home.  It is great to all be at home together.  This is the first time that Stacey and I have been home at the same time for almost 12 days.  Right now, Bailey is asleep in our bed.

We are not out of the woods yet.  Bailey will be on tapered dosages of Methadone for the next two and a half weeks.  Hopefully everything will go well.

I will publish another update when Bailey is off her Methadone or if anything note worthy happens between now and then.  I will also update when Bailey has her next scope in about 4 weeks.

We feel blessed to have had everything go so well.  Thank you to everyone who prayed for us, thought about us and helped us in anyway.

 

Update 6.20
 
Wednesday, July 5, 2006 

The last two weeks have been good but hard at the same time.  While it has been wonderful to have Bailey home from the hospital it has also been a very trying time to me and my wife.  Bailey has not been herself since she came home.  She has taken to throwing horrible tantrums.  I want to do the right thing and help Bailey understand that there are boundaries and rules in her life.  I want to discipline and reinforce what we have always taught her but it is hard to discipline when I know that she is not herself because of the Methadone.  However, I can't just sit back and let her throw tantrums, talk back and generally misbehave.  This has been a hard time for my wife and I.  Many hours have been spent just hugging an out of control Bailey as she thrashes around until she calms down enough to talk.

Bailey is off the Methadone now so we are hopeful that we are done with the worst.  She received her last does on Sunday.  She has slowly been returning back to normal.  In another week I think we will be just fine.

The fact that things are getting back to normal is what makes this next bit of information so hard.  We have noticed that over the past 2 days Bailey's breathing has become louder.  Bailey climbed into bed last night and I lay next to her and listened to her breath.  Stacey and I talked this morning and decided that Bailey's breathing sounds as bad as it did before the surgery.  Stacey called the surgeon today and he is also worried. As a result, Bailey will be back in the hospital for a 24 hour period starting in the afternoon of Thursday, July 13, 2006.  However it could be sooner.  Bailey is on an anti-inflammatory medication right now.  If she doesn't get better by Friday the surgeon wants us to go back to the hospital on Friday night.

It looks like we are not out of the woods yet.

 

Update 6.21
 
Thursday, July 6, 2006 

It is a few minutes before midnight and I just got home form Primary Children's Hospital.  Bailey was admitted tonight.  Her breathing did not responded to the medicine she started taking yesterday.  We called the surgeon and he wanted to see her.  After about 3 hours in the ER (we had to go in through the ER since ENT was closed by the time we got to the hospital) they admitted Bailey for the night.  Chest x-rays look good, in fact, everything looks good.  This all points to Bailey's airway.  We won't know how that is until after they scope her at noon tomorrow.

I felt really bad for Bailey.  She didn't trust anyone at the hospital and she seemed to regress a little behaviorally speaking.  I am so tired.  I hope this goes well and we can have Bailey back home soon so we don't have to repeat the last two weeks of progress we have made.  I don't know if I would be physical or mentally able to do that again.  Regardless, I am Bailey's and Hayden's dad and I will find a way.

 

Update 6.22
 
Sunday, July 9, 2006 

Bailey came home on Friday afternoon.  She went in for her scope at about 11:30 AM on Friday.  Stacey said it was very sad.  As they were taking Bailey into the OR she was yelling, "I don't want to do the mask!"  I can't blame her.  Last time she did the mask she woke up with tubes down her throat and up her nose, with needles in her arms and all kind of uncomfortable stuff.  Then she spent four days semi-conscience and semi-paralyzed.  Stacey also said that Bailey got so scared she had a little accident right before she went into the OR.  I hope that some day she can put this all behind her and not be so scared of doctor's, hospitals, and health care professionals.

The OR went well.  The surgeon that performed the scope was not he same surgeon who did Bailey's surgery.  The original surgeon was out of town.  The new surgeon told us that it was a good thing that we brought Bailey back to the Hospital.  He said that there was a small area of tissue below the surgery site that was swelling and closing off Bailey's airway.  Bailey also had some granulation (scar) tissue forming.  The surgeon removed the granulation tissue, treated the tissue with some topical medication, and he dilated the airway where the swelling was occurring.  Bailey recovered fine from the scope but she was said and scared.

Hayden and I picked up Stacey and Bailey form the hospital at about 5:00 PM on Friday.  It was nice to have her home again.  We will most likely be back in the hospital next week for another scope.  We hope that Bailey will recover quickly and that she will be OK to travel so we can go on our vacation at the end of the month.

Today was Bailey's first day back at church.  I wonder if she felt like a celebrity?  I wonder if she knows what a celebrity is?  Everyone, from the old gray hairs to the young 3 year olds, said hi to her and asked her how she was doing.  It was very sweet.  Everyone we know (and even those we don't know) have been very supportive.  We will keep our fingers crossed for next week.

 

Update 6.23
 
Thursday, July 20, 2006 

Today was a whirlwind of activity.  Bailey had her checkup at the hospital, I was supposed to work a half day and we were trying to finish packing to go out of town on vacation (assuming the checkup went well).  My half day turned into a full day.  We were behind on the packing and Bailey's appointment didn't go as expected.  However, we still made it out of town and enjoyed a week with family at Shasta Lake where Bailey really liked to tube behind the ski boat.

Stacey took Bailey to the hospital and after the stories she told when she got home I really wish I had been there too.  The anesthesiologist was anything but helpful.  To make a long story short, the anesthesiologist was adamant about Bailey getting an IV before they put her under.  Does this make any sense at all to any one reading this?  Why would you make a little girl who has been through so much get an IV poke just minutes before you are going to knock her out and put her to sleep?

Despite numerous attempts to explain Bailey's situation and her past episode of post traumatic stress disorder, the anesthesiologist would not budge.  She was all about doing things the way she thought was right (by the book).  She saw Bailey as a chart, not as a patient.  She refused to hear anything Stacey had to say and insisted on doing things her way and not adjusting for Bailey's situation.  She even made all of the kids take Versed by having it squirted up the nose as opposed to letting it be swallowed.  Her reason for this was that she wanted the patients' stomachs to be empty.  I am sorry, but I have a hard time seeing how a few milliliters of medicine that the body will quickly absorb, is going to cause any risk of aspiration in the OR especially because all of the other anesthesiologists have allowed Bailey to swallow her Versed.  This type of action is illogical.  It is like asking a full grown adult to take a rectal temperature because it is the nurses preferred method despite the fact that they are perfectly healthy and willing to take an oral temperature.

The anesthesiologist was a lady and did not have any children of her own.  I simply don't think she had a caring bone in her body.  Maybe if she had children of her own things would be different.  Maybe that is too harsh.  It sounds weird to say that about a person in the medical field, but that is exactly how my wife felt.

Through the nasty nurses and the unyielding doctor, Stacey held her ground knowing that even a small thing like an IV prick could cause Bailey to relapse.  Once Bailey's surgeon arrived he straightened everything out and Bailey was given an IV after she was put to sleep.

The checkup did not go as well as we had hoped.  Bailey has some scar tissue and her airway has closed by a significant amount.  Everyone is hopeful that it won't close any further but I am having trouble putting a lot of faith in phrases that start, "Well it usually..." or, "In most cases..."  Immediately following surgery Bailey's airway was opened so that a tube with an outside diameter of 6.0 mm could be put down her airway.  This is called a 4.5 tube (4.5 mm is the measure of the inside diameter).  During this checkup the surgeon was only able to put a 3.5 tube down Bailey's airway.  The outside diameter of a 3.5 tube is 5.0 mm.  So the diameter of Bailey's airway has gotten shorter by 1.0 mm since the surgery.  This is a 31% decrease in the size of Bailey's airway.  I pray it doesn't get any smaller or this will all have been for not.

The wheezing is back.  Not as bad as it was before but it is back just the same.  We are hopeful that her airway will stop shrinking and that it will start to grow as she grows.

Here is a picture of our sweet little Bailey at Shasta Lake tubing with her cousin Anna.  She had a great time.

Things have been tough.  Bailey is not herself.  She has digressed to an earlier behavioral state.  She is still smart as a whip but her social skills have gone down hill.  She still has a lot of separation anxiety, she gets scared very easily, and she has a hard time expressing her feelings.  She won't talk when she gets upset or scared.  She grunts and cries much like her younger brother.  When she get scared or has anxiety she physically behaves much like she did while she was in the hospital for the 96 hours after she was woken up form surgery.  She will avoid looking straight at you, she plays with her fingers, she rocks herself and she clicks her tongue.  It is frustrating as a parent but I am positive that she will make a full recovery.  It is just going to take some time.

 

Update 6.24
 
Friday, September 8, 2006
(Click here to go to Father's thoughts)
 
Bailey had a follow up appointment at Primary Children's hospital today.  Everything went well.  The surgeon was able to put a 3.5mm tube down Bailey's airway with a small leak around the outside.  This is a slight improvement over the last visit to the hospital.  The surgeon said that as of today, the result of the surgery was less than hoped for but still good.  He expects that as Bailey grows her airway will also grow and that by the time she is a teenager her airway might catch up with the rest of her.  Until then my wife and I will simply have to learn to deal with the the worry we get every time we hear her wheezing.
 
During her visit to the hospital Stacey talked to Bailey's nurse about the horrible experience of their last trip to the hospital.  The nurse told her she should file a patient grievance form so she did.  The experience this time around couldn't have been better.  The hospital staff all acted with Bailey's mental and physical health in mind.  Bailey was very brave and only cried a little right before they put the mask on her to put her under.  She asked for bubble gum flavored gas.
 
It sounds like Bailey might go in for another checkup in May of next year.  This stinks insurance wise (new deductible and out of pocket maximum) but I am glad the she is doing better.  Maybe someday soon this will all seem like a distant memory.
 
Thank you to everyone for all of your prayers, thoughts, phone calls, emails, etc.  We are happy that you could be a part of this experience (again) with us and help us through it at the same time.  Until the next "event" keep safe and happy.  Thank you again!