All Good And Perfect Gifts Come From Above

This has been our anthem since the beginning.  This song has remided us that God is and will always be in control of Audrey's situation.  God has a purpose for Audrey.

Chris Tomlin — Our God (Is Greater)

Water You turned into wine
Open the eyes of the blind
There's no one like You
None like You
Into the darkness You shine
Out of the ashes we rise
There's no one like You
None like You

CHORUS
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...

Into the darkness you shine
Out of the ashes we Rise
There's no One like You
None like You.

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
[ Lyrics from: http://www.lyricsty.com/chris-tomlin-our-god-is-greater-lyrics.html ]
BRIDGE
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
What can stand against?

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...

And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who can ever stop us
And if our God is with us, then what can stand against?
Then what can stand against?
Then what can stand against?

Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...

Scars



Audrey's trach scar.  It's been 3 months since it was removed.  It has a rash under it that won't go away. 



Audrey's feeding tube scar.  It has been about one month since it was removed.

Audrey's tongue after surgery, 7 months later.  You can see that one side it "missing".  This side still gets very red and blisters.  She may need further treatment.  It is uncomfortable when it is like this.

Audrey Now: 7 Months After Surgery

It's been 7 months since Audrey's surgery.  We are at point now where the doctors are watching her cysts to make sure they don't continue to grow.  She is not receiving and sclerotherpy because the cysts she still has are too small to treat.  Her tongue still protrudes (just a little).  She will need speech therapy so she can learn to form words properly.  She is talking up a storm!

Just one of the girls

Full Freedom

In February 2011 Audrey had her feeding tube removed.  She is allowed to eat regularly now.  This is tricky because her teeth aren't coming in normally because her tongue was preventing them from coming in.  She has teeth on one side of her mouth and her front teeth, but not all of her teeth on the other side.  A therapist is working with her to teach her how to chew and use her tongue.  She is very picky about what she eats.  She mostly mashes her food in her mouth.  She will only eat soft foods.

Audrey's tongue protrudes just alittle, but she can keep it moist on her own.  No more scabs or beeding.

On the Run

Audrey wasn't walking when she had her trach.  She was pulling up on things for a long time, she just wouldn't take off.  Shortly after her trach was removed (a couple of weeks maybe) Audrey FINALLY began to walk.

Look what I can do!

Extraordinary Little Girl

The best part about having Audrey's trach removed was hearing her voice again.  You don't understand how precious that cry is until it's gone.  It brought tears to my eyes the first time I heard her voice.  She was excited too - she was so loud and crazy and LOVED being able to make noise.

I love this picture because Audrey's truely being silly and sticking her tongue out on PURPOSE!

Our Christmas Wish Come True

Our wish was for Audrey's trach to come out by Christmas.  When we said it it seemed very unrealistic.  However, just a few days shy of Christmas, Dr. Morgenstein gave us our wish. After almost 5 months Audrey had her trach removed.  In fact, Dr. Morgenstein gave me the honor of doing it.

Best goal EVER!

 

About a week before her trach was removed we went down to Riley and Dr. Morgenstein put a smaller trach in.  During the day we kept the trach plugged and we took the plug out at night.  This was a special time - we were able to hear Audrey make noise.  It wasn't quite her regular voice, but it was still music to our ears.

Audrey gets a smaller trach

Then we went back down to Riley.  First we stayed overnight and they "plugged" Audrey's trach overnight to see if she could breathe ok on her own.  She was just fine with it plugged so the very next morning Dr. Morgenstein came in bright and early and had me take out her trach.  This was kind of weird.  I thought this would be a BIG deal or procedure or something.  I mean, it was such a big deal going in, I thought it would be the same way coming out.  WRONG.  I took it out right there in our room.  The nurse covered it with a little gauze and they watched her overnight again to make sure she would be ok.  She did a GREAT job so we got to go home - trach free just in time for Christmas.  It was the best gift anyone could have given us.

Trach free baby girl

Amazing Progress

By Decemeber Audrey was looking great.  We went to Riley for a sclerotherapy appointment and this is when we first heard that we might be able to remove the trach.  This was WAY eariler than we expected.  She had only had it for about 4 months.  We were expecting no less than 1 year. Good is AMAZING.

Halloween 2011

In honor of Audrey's nursing staff I made her a pair of scrubs to wear for Halloween.  We thought this was pretty appropriate :)  She looked amazing by this point - 2 months post surgery.

Audrey Foster, RN

Successful Check Up

We had to return to Riley two weeks after we went home for a follow up appointment.  It is amazing how great she looked! This is about 1 month post-surgery.

One month after surgery (she's drawing her tongue in this picture - it still protruded a little)

Feedings

By the time we took Audrey home she only ate through her feeding tube.  Due to the discomfort with her tongue she lost interest eating by mouth.  We would open her feeding tube button (which looks a lot like the valve of a beach ball), insert extension tubing, attach a large syringe, and poor a nutritional supplement called Nutren Jr. into her feeding tube.  This was like having a newborn all over again.  Audrey had to be fed a certain amount of food every 4 hours.  Eventually we adjusted this to every 6 hours.  Thankfully we did not have to wake up in the middle of the night and feed her.  Since she wasn't waking up to eat in the middle of the night before she had her feeding tube the doctors said we could let her sleep through the night.  She would get feedings at 5 am, 11 am, 5 pm, and 11 pm.

It wasn't uncommon for Audrey to fall asleep during her feedings. 

Baths: Tricky Business

Baths were tricky.  You can't get water in the trach - it's a direct passage to the lungs.  This was very tricky because Audrey LOVES bath time.  We managed.  She could only bathe in an inch or two of water.

Little Fish

Way Too Long

Going Home!

We were at Riley for 3 weeks.  It felt like forever.  Although we wanted to go home SO bad, I am glad the doctors and nurses did everything they could to make us comfortable taking Audrey home.  I felt very comfortable caring for Audrey when I got home.  Honestly, it was very difficult.  I was so used to having help and suddenly I had to do it all myself.  It was exhausting.  Also, I was used to being able to sleep (as best as one can in the hospital) without having to worry about Audrey.  We were very restless for several weeks.  We were so afraid something would happen during the night and we wouldn't know.  Eventually we learned to trust the monitors.  They actually came in handy.  We got used to what range was normal for her heart rate and we could tell when she wasn't feeling well or uncomfortable.  Her oxygen monitor let us know if she needed suctioned.  We only needed to use her monitors while she was sleeping.  During the day she did not have to be hooked to anything.  The only machine she needed during the day was her suction machine so we could prevent her trach from getting clogged.

The staff at Riley also took care of our transition to home.  They made sure our medical supplies and equpiment were delievered.  I had never delt with anything like that before so I wouldn't have known what to do.  They also set up home nursing for us.  They worked with our insurance to find out what was covered at what was not.  They also gave us money (through a donor) to provide additional nursing hours that wasn't covered by our insurance.  They went above and beyond for our daughter.  We ended up not using the additional nursing hours, so that money was used towards another child in need.

Audrey towards the end of our stay

Creepy Baby (No, Not Audrey)

This is one way we were trained to care for Audrey.  I'm sorry, but this is lame and so unrealistic.  As a teacher myself I thought this was very pointless.  I learned nothing by practicing with this training baby.  It is how I was trained to put her emergency feeding tube in (in case the one the doctor's put in came out at home).  This is one thing we couldn't actually train by practing directly on Audrey.  We prayed it never came out.  I don't know if I would have known or remembered what to do.  They sent us home with an emergency kit and a how to book.  Honestly, I think I would have taken her to our pediatrician or to the ER if it came out.  It never came out....whew.

Training Doll

Side Note: The Book of Awesome

A teacher from the school I work with (whom I hadn't worked with yet) sent me this book in a care package.

Random side note.  THE best book to read in the hospital:  The Book of Awesome.  This book is full of short stories.  They made me laugh each day.  Laughter is the best medicine they say.  Also, since it's short stories it's good for all the times you're interrupted because of meeting baby's needs or because a doctor or nurse stops into visit. 

One "story" from The Book of Awesome - this reminded me of Audrey

Aggressive Treatment

When they told me they could be aggressive with the sclerotherapy treatments after the trach was in, I had no idea how aggressive they meant.  While we were still in the hospital, just a few days after Audrey's surgery, they did a very aggressive sclerotherapy treatment.  As I said before the worst part about sclerotherapy is initially getting the pain under control.  The first day is always the worst.  This is Audrey one day after that aggressive sclerotheraphy treatment (they did over 20 injections in her neck and tongue areas). She is SO resilient!  God is good.

She is so swollen and bruised beause of the treatment.  Here she looks worse than she did before the treatment, that swelling only lasted a few days.

Strongest Person I Know

Audrey is truely the strongest person I know.  A day or two after her surgey she was back to her old self.  She smiled, laughed, danced, and played.  She's an AMAZING little girl.  God has big plans for her.

This is what Audrey's tongue looked like after surgery, the tube is keeping moisture to her trach, and you can kind of see her feeding tube botton.

New Normal

After her surgery, we had to learn what "normal" was going to mean for us.  We were told at the time that it was likely Audrey would have her trach and feeding tube for about a year.  During this time the doctors could do sclerotherapy more aggressively everywhere and not have to worry about compromising her airway.

My husband and I had to be trained to trach care of a baby with a trach.  Thankfully Audrey only needed her trach "just in case" - she didn't NEED it to breathe like most trach patients do. She didn't have to constantly be attached to machines.  She didn't need any medication when she got home.

She did need to be on machines that monitored her oxygen and heartbeat while she slept.  She also had a machine that kept moisture going through her trach so it wouldn't get clogged. 

We had to learn to suction her trach to keep it from getting clogged with mucus- this sounds worse than it is.  To me it was no worse than blowing her nose. We had to learn how to change and take care of her trach and feeding tube.  We had to learn to feed her by her G-tube.

I had no idea what we were going to do when we got home. The doctors said Audrey HAD to be with someone trained to take care of a baby with a trach.  We lived so far from Riley - no one could come down and get trained.  This caused a lot of stress.  We did fight a little bit with the hospital on this issue.  We felt there HAD to be some place close to home where other willing people at home could be trained to care for Audrey.  Eventually the hospital worked it so that a local home medical service could train people at home to care for Audrey.  If this wouldn't have happened, I wouldn't have been able to return to work.  God's hand showed up again here.  My baby sitter without hesitation volunteered without being asked to get trained so she could continue watching my girls.  Dorris is an amazing woman.  God is good.

Adjusting to a new noraml - Audrey, Addison, & Hannah

You Want to Do WHAT?

When Monday came and we were able to talk to Audrey's ENT (ear - nose - throat) doctor, Dr. Stuart Morgenstein, he said that would be able to place the feeding tube Wednesday. Ugh.  We didn't plan to be here that long.  He also dropped another surprise - they wanted Audrey to have a trach (a whole in her neck to help her breathe).  They wanted to give her a trach so they could treat her more aggressively and so they wouldn't have to worry about compromising her airway.  Then they dropped another surprise - they also wanted to do surgery on her tongue and remove part of it.  I did mention I was all by myself, right?  I went from an appointment where I planned to be at Riley for one night and have two tests done to having a feeding tube and trach placed and having part of my daughter's tongue removed.  Scared doesn't begin to describe it.

We ended up waiting about a week to have the actual surgery.  By then Dan came to be with me and my mom, Dan's dad and stepmom came to be with us for Audrey's surgery.  That was the longest day of my life.  After surgery Audrey would have to spend time in the ICU until they felt she was stable and ready to go back to a regular room.  We were in this for the long hall - we were going to be at the hospital for at least a couple of weeks.  I missed my girls at home and really wanted the whole situation to be over.

When Audrey came out of surgery I guess I expected her to be in a little pain, but I also kind of expected her to be all better, fixed, and done with this whole situation.  Wow, was I wrong.  If anything, she looked WORSE after surgery.  Her tongue didn't look better - it was a mess (they removed about 15% of it).  It was still covered in blisters, still had scabs, still bled, now it had stitches - it STILL hung out of her mouth.  I hated hearing everyone say she looked so much better.  It felt like they were just saying it to make me feel better - it didn't make me feel better.  Looking back, it did look better.  I just couldn't see it then.  On top of all that she had tubes hanging off of her and two new holes - her trach - that scared me to death and first (come on, my baby had a hole in her neck) and her feeding tube.  While originally that's what I was scared about - it didn't seem like such a big deal anymore.

One thing I wished I would have been prepared for was knowing that Audrey wouldn't be able to make any sounds when she had her trach.  When she woke up from surgery I learned she couldn't make noise.  I couldn't hear my baby cry.  This was devastating.  How could I help her?  How would I know if she needed me?  How would I know she was awake at night?  Later I learned she would be on monitors when she slept that would alarm me at let me know when she was crying.  This took some time getting used to.  We had sleepless nights for awhile until we learned to trust the monitors. 

This was also hard to deal with because this was about the time Audrey should have been learning to talk.  We decided to teach her some sign language so we could communicate with her.  We taught her signs like; more, eat, mom, dad, please, thank-you, beautiful, etc.  This was also difficult because Audrey had the BEST belly laugh - I wouldn't get to hear that for a while.  That was heartbreaking.


Audrey in ICU after surgey



Audrey's Tongue

Everytime I see this picture I still say, "Why did it get this bad before the doctors FINALLY did something???"  This was Audrey at her worse.


What amazes me is how happy Audrey still was during this time.  Any adult would have complained and whinned - not Audrey; she's such a trooper.



Baby Steps

After we discovered Audrey was aspirating food into her lungs the doctors immediately stopped letting her take a bottle.  Yeah, taking a baby's bottle away - that's a fun experience.  Since she wasn't really interested in it because of all that she was going through it wasn't as bad as it could of been I guess.  Since Audrey couldn't have her G-tube (feeding tube in the belly) placed until the weekend was over the doctors put a NG tube (feeding tube through the nose) in until her G-tube could be placed.  In retro spec, this actually helped me get used to the whole idea of getting a G-tube. 

It wasn't easy for the doctors to get that tube up her nose and down her throat because of the swelling in her tongue.  They actually had to do it twice.  Not fun.  Poor girl.  This actually wasn't her first time with a NG-tube; she had one when she was in the NICU as a newborn for 1 day.

Here you can see two things:  One - Audrey's not being silly - that was the actual size of her tongue. Two - her NG-tube. They placed socks on her hands so she wouldn't pull it out. She was still able to eat thickened food by mouth during this time.

Not A Part of the Plan

Between our clinic appointment and our next appointments Audrey was going down hill very quickly.  She was bleeding all the time, had fevers all the time, and would hardly eat anything.  This was a very busy time because school was getting ready to start and I was trying to prepare my class for the new school year. STRESSFUL.  The day of her sleep study I spent the day preparing my classroom.  It would be my last time to come in before school officially started and Audrey and the girls were with the babysitter.  On my way home I got a call from the sitter.  She told me Audrey was very crabby, had a fever, was bleeding badly, and wouldn't stop crying.  I didn't know what to do.   I felt like no one was listening or helping the way we needed them to.  I knew we were planning to drive to Riley that very same day, but I didn't feel like they were going to DO anything, only run tests to make a PLAN to do something.  I was frustrated and at my breaking point.  I also was afraid they wouldn't even go through with their tests because Audrey was so sick - but it was all being caused by her tongue!  I called my mom and she told me to call our family doctor.  Although they were minutes from closing for the day they told me to bring her right in.  I went home, packed an overnight bag for Audrey and I (for our trip to Riley, IF it was even going to happen now) and I rushed her to the doctor's office.  My doctor took one look at her and told me to leave for Riley NOW.  She called the doctors when I was on my way and voiced all her concerns.  This is the first time I learned Audrey hadn't gained any weight in several months and was in the 3rd percentile for her age/gender.  This is also when my doctor told me that they may decide she needed a feeding tube in her belly.  I was terrified.  I didn't know what to do or what to expect.  On one hand I knew Audrey needed help, but on the other hand I didn't want her to go through more pain and have a HOLE in her belly.  I drove to Riley - just me and Audrey praying all the way for help and answers.
When we got to Riley we went for her sleep study.  She was so uncomfortable.  I had no idea how she was going to get through the sleep study.  She had wires all over her.  The people running the tests basically ingnored everything I was telling the and I felt like I was right all along and that no one was going to help.  Thankfully we got through the sleep study.  Good news: Audrey did not have any distress while sleeping.  This was God's work, if you had seen her tongue you would have wondered how that was possible.

Next we went on to have her feeding study.  I have to admit, this test was pretty cool.  Audrey sat in a special seat and they had something that looked like an x-ray machine taking pictures of her mouth and I feed her various things.  This machine projected onto a screen where you could see where the food was going.  Bad news: Audrey was asperating food into her lungs.  This explains why she stopped wanting to eat.  More bad news: Audrey needed to have a feeding tube - we were staying at Riley.  More bad news: it was the weekend - no answers until Monday (this was also when school started for me - things were complicated).

The worst part - I was alone.  I had to be Audrey's voice and I had no idea what to do.

Audrey and I were in for the long hall - admitted to the hospital

Riley Clinic Appointment

When we met with the team of doctors they mentioned trying a different kind of medicine with the sclerotherapy.  They also discussed possible surgery options to "debulk" Audrey's tongue.  They gave us some medication to try to help with the blistering/scabbing/bleeding on her tongue.  The result of this appointment was to return to Riley at a later date and have a sleep study and feeding study done to see if her tongue was causing any breathing and feeding issues.  Typically these kind of appointments take a while to schedule and usually aren't done together, but since we live 3 1/2 hours from the hospital they wanted to schedule them together so we would only have to make one trip.  They were also going to speed up the process since Audrey couldn't wait months to have the test done.  The doctors also mentioned at this time "worse case" scenarios.  They said worse case Audrey could end up getting a trach and feeding tube - but they didn't see that happening.  That was a relief at the time.

July 2010

Audrey was miserable on our vacation to Florida. It was our first vacation as a family of five.  This is about the time her tongue really started to grow quickly.  It had several blisters and scabbed over all the time and would bleed. All she wanted to do is be held and sleep; this was not normal for our typically very happy girl.

Audrey 11 months

Audrey's favorite thing to do in Florida was hang out in the pool.  One thing that was heart breaking later on was when she got her trach and couldn't swim or take regular baths anymore.  This baby girl is just like her mommy; she loves the water

Mommy's little fish

Late June 2010

As Audrey's tongue grew and protruded more out of her mouth she would drool all the time.

Late in June we went to a check up at Riley and we set up an appoitment to go a special clinic where we would meet with a team of doctors to take action on Audrey's tongue.  Unfortunately our appointment wasn't until August (2 months away).  With how quickly it was growing this made us a little nervous.  The doctors said we could do another sclerotheraphy treament during this time, but we decided to wait.  We didn't feel like it was working.

Audrey's First Birthday

When Audrey was about 12 months old her tongue began to protrude more out of her mouth.  We also noticed it appeared to be fatter, have blisters, scab, and bleed.  The doctors still weren't giving us the answers we wanted.   Audrey was still having sclerotherapy every 6-8 weeks and the doctors were very cautious when it came to the injections in her tongue.  They did not want it to swell too much and compromise her airway.

Audrey's First Birthday

Feeling Very Discouraged

We began to feel VERY discouraged about Audrey's tongue.  Everyone who saw Audrey noticed her tongue.  People were always staring and asking questions.  Although I knew people were just curious, I hated this.  I didn't like to take her out in public.  I was tired of people looking at her like something was wrong with her.  I know she technically did have something wrong with her, but to us she was perfect.  This is when I felt like God was teaching me to have empathy for other parents and children with special needs.

During this time, it felt like the doctors were doing nothing.  We were going crazy.  We knew this was NOT normal, but we seemed to be at a stand still with the doctors.  She was still getting sclerotheraphy treatments every 6-8 weeks, but it didn't seem like enough.  We put our trust in our doctors and PRAYED.  I wish we would have been a stronger voice for Audrey and demanded more answers or treatments.

Around 10 months is when her tongue begane to protrude from her mouth.  She was still able to keep it moist on her own, but it was often more comfortable for her to let it hang out of her mouth.

10 Months Old - Stand Still

After Audrey's first treatment went so well, it was discouraging when her several treatments afterwards showed little or no improvement.  Our concern for her neck region was low, we were very concerned about her tongue region.  Her cysts hadn't gone completely away - she just kind of looked like a cubby baby.

Audrey 10 months (center) Looking at her mouth it just looks open.  What you can't see is that you are looking under her tongue.  The tongue is pushed up into the top of her mouth.

7 Months Old

Audrey's tongue continued to grow, but the doctors held off treatment.  It wasn't compromising her airway and they weren't sure how they wanted to treat it.  I won't lie; sometimes we felt like the doctors weren't sure what to do.

Audrey's growing tongue

6 Months Old

December 2010 - 6 months old

No major changes.  The first tongue injections didn't seem to do much.  The doctor didn't inject very many time because he didn't know how much her tongue would swell and he didn't want to compromise the airway.  Her tongue didn't seem to get bigger, but it didn't get smaller either.  Around this time is when her cysts in her cheek and neck seemed to grow a little again.  Audrey had to take antibiotics and steroids for a short time due to some infections in her cyst areas.  We were warned this could happen.

Sclerotheraphy Round Two



The worst part of sclerotherapy is when she came out and started to wake up.  She was always in so much pain.  The nursing team at Riley always worked so hard to control her pain and make her comfortable.  The best medicine was always mommy.  She always wanted to be held.  The first 24 hours was the worst, after that she quickly bounced back.  Audrey is the strongest person I know.



Audrey before her second round of injections.  Her neck was looking great, her tongue on the other hand was slowly getting bigger.



Side Effects?

After the first round of sclerotherapy is when we started to notice more growth in and under her tongue.  This was difficult to deal with because while the doctors tried to assure us that there was no need to be worried about her ability to breathe - we were still on high alert all the time.

Looking in her mouth you're actually just seeing under her tongue here.  Audrey's tongue was always pushed up inside of her mouth.  Underneath kind of looked like what we could only describe as like a pouch on a frog.  It was very puffy.

Sclerotherapy Round One

Audrey had her first round of sclerotherapy sometime in July or August 2010 (1 or 2 months old).  Dr. Francis Marshalleck was the IR (interventional radiology) doctor who did the sclerotherapy injections.  He told us to expect about a 25% reduction of her cysts.  That was the HOPE.  After only one injection her cysts reduced in size about 75%.  God is good.  The power of faith and prayer is amazing.

She looks perfect and beautiful after 1 round of injections

Growing Audrey...Growing Cysts

The Riley doctors originally told us it was a possibility that Audrey's cysts may become less visible as she grew.  Kind of like she would "grow into them".  Unfortunately, the bigger she became, the bigger her cysts became.  However, they still were not causing any problems so the doctors still decided to wait to treat Audrey.



 

Cutest Little Sister

After coming home and getting settled in it wasn't much different than when we brought Hannah (3 at the time) and Addison (15 months) home from the hospital.  The only difference we noticed is that Audrey always seemed like she was looking up or stretching her head/neck upwards to be more comfortable because of the cysts in her neck.

July 2010 - 1 month old

Home Sweet Home

Audrey had to go through a 4 hour car seat check before leaving the NICU.  While she did fine in the hospital during the night and throughout the day, they wanted to make sure she could handle a 4 hour car ride in a seated position and make sure the car seat straps wouldn't cause any discomfort or distress.  Thankfully all was well and we were able to go home the next day!

She loved her binky at first - eventually she lost the ability to keep a strong enough suction to keep it in her mouth

Good News At First

At birth, Audrey's cysts did not cause any problems with feeding or breathing.  The doctors decided to wait until she got bigger before she had any treatments.  The only difficulties she has was not being able to nurse.  When she arrived in the NICU they gave her an NG feeding tube (feeding tube through the nose) and feed her that way until we arrived since they knew we were attempting to breast feed.  After I arrived, she would no longer nurse.  The cysts in her tongue made her tongue a little larger and pushed it up into the top of her mouth which made it too much work for her to nurse.  Thankfully, she could feed from a fast flowing bottle.

Wide Awake

Hungry Girl



Riley NICU

Audrey Joy

Audrey & Daddy - One of my favorite pictures - Audrey is daddy's girl

The day of Audrey's birth doctors decided to have her transferred to Riley Children's Hospital.  She was transferred in an incubator by a local medical transportation team.  Dan and I had to drive down separately after I was released from the hospital.  Audrey was in the NICU at Riley for about a week.  This is where we met the team of doctors who would be caring for Audrey.

Audrey's Arrival

Audrey Joy joined our family Wednesday, June 16, 2010 at 9:38 a.m. weighing in at 7 lbs. 12 oz. with a length of 20 inches ♥ She was born with cystic hygroma hemangiomas on her neck and face.  They were on the right and left side of her neck and crossed over the mid-region on her neck.  She also had cysts in her cheeks and inside her mouth.  We found out about her condition when I was towards the end of my pregnancy in a routine ultrasound.  I had additional ultrasounds and a fetal MRI to confirm her condition and to see how severe her condition was.  I was able to give birth at home in Elkhart, IN at Elkhart General Hospital.  However, after her birth, the neonatologist did an exam and decided to have her transferred to Riley Children's Hospital in Indianapolis, IN.  She spent about one week in the NICU so the doctors could determine what kind of treatments would be best for her and when the first ones would need to take place.  This is when we first learned about sclerotherapy  (injections into the cysts) and possible surgery options (last resort).  The doctors felt she was stable enough for us to take home and our home pediatrician watched over her closely.  The Riley doctors wanted her to grow a little bigger before they started the first treatments.

Audrey Ryanne Joy Foster