The Dr's

How many Dr's can one tiny person have?  Well let's see...

1. Pediatrician
2. Neurologist
3. Neurodevelopment
4. Opthamologist
5. Eye plastic surgeon
6. ENT
7.Chiropractor
8. Genetics
9. General surgery
10.  Dentist
11. Cardiologist
12. Ear Surgeon (cochlear implant)
13. Facial/plastic surgery
14. Nutritionist

Soon to be adding an orthopedist and an endocrinologist and possibly a urologist.

She also sees an occupational therapist and an ABM practitioner (it is kinda like a type of physical therapy, but focuses alot more on the brain and nerve connections.)

I think this is absolutely ridiculous.  Unfortunately, she's needs all of them or trust me I would be getting rid of them.  Luckily, we are now down to only seeing most of them once or twice a year.  For awhile we were seeing most of them monthly or every couple of months. I was losing my mind!  I'm pretty sure people thought I was lying to them because every time they asked me to do anything I would say "Sorry, we have a Dr's appt".   Some people understood, others not so much, but we can't please everyone.
  Chloe and Aubrie go to almost all the appt's with me.  The only time they don't is if it is a new Dr or if I know it will be a long appt.  They usually do very well at the appt's because they have the routine down pat, know how to behave and what I expect from them.  The girls also know that good behavior has it's perk when it comes to stuff that we have to do with Sadie.  Usually, they get some kind of "reward".  No, I don't buy them things.  But if time permits we will go to the park, or get some lunch, or go to someones house, or get ice cream, or go to the mall to play on the play stuff, rent a movie, etc...  Sometimes they are just happy with getting a bracelet or sticker at the Dr's office.  That's not to say that we haven 't had a few break downs in the offices, they are human and children after all, but over all they do an excellent job and I couldn't be prouder of them.

 

It's Sadie's Birthday

   Today is Sadie's birthday.  It just blows my mind that a year has gone by already.  All the ups and downs of the year.  The ups are just having her in my life, the downs are all the dang Dr's and diagnoses.  To celebrate her I thought I would put up a few pictures of her first 19 days of life. 

 First time I laid eyes on her.  She was beautiful!

 

Sadie was on C-Pap for about 12 hrs or so.

Daddy's big hand holding her tiny hand.

 

Her first echo of her heart, not even an hour old.

 

This should be a t-shirt on a baby, on Sadie it's a dress.

4 lbs, 15 oz    17 inches long

 

The tube coming out of her nose is an NG tube.  That is how she ate for the first 6 months of her life.

She looks so sweet and peaceful in this picture.

 

Because of her reflux her head needed to be elevated. She kept sliding down, so the nurses built her a sling to keep her up.  It was her own personal little nest.

 

Love her!!

 

We are free!!

Released on Nov 16.  Which is ironic since she was supposed to be born that day.

 

Chloe and Aubrie had no idea she was coming home.  They were so excited and in awe that she was finally home and that she was so tiny.





 

What a long, strange trip it's been!  A trip I would never change, I will never forget and that is far from over.  Happy 1st Birthday Sadie.  I love you!



Comments

I've had a couple people tell me that they have posted comments and that they are not showing up.  So I attempted to figure out why.  I am sooooo not computer savvy.  I'm lucky I'm figuring out how to use this blog stuff.  However, I think I fixed the problem.  I apologize if you have left a comment and I didn't get it.  Try again, please.

Interesting week with Dr's

   Sometimes I get on these kicks where I get frustrated with Dr's because I feel like they are just not doing enough for my daughter.  Sometimes I am content with everything that is going on.  Well recently (the last couple weeks) I went into frustration mode.  So I started firing Dr's.  First was her ENT.  He was a very nice, very gentle,  older gentleman, however, he has not done anything for her except confirm that she has hearing loss.  Well, any idiot could have recognized that.  Sadie has swallowing issues, airway issues, raspy, hoarse voice, questionable fluid in her ears.  But has he looked in her throat?  No.  Has he looked in her ears? No.  Why? because she was upset and he didn't want to make her more mad and her ear canals are very tiny so it was hard to see in them.  Really?  Dumb excuse.  So we went in search for a new one.  We went to see someone that one of my friends recommended.  I told him my concerns and he actually listened to me and did something about my concerns right then and there.  It was amazing!  Low and behold we got some answers.  A couple more pieces to her puzzle.
  1.  He looked in her ears with an itty, bitty microscope.  He could see into her ears, after I was told by numerous Dr's her ear canals were to tiny to look in.  He confirmed that yes she does have fluid in her ears.  Poor girl has had fluid in her ears for at least 8 months. Her last ENT also said that even if there is fluid, her ear canals are to tiny to do anything to fix them.  Well, her new ENT disagrees.  Sadie is going to have tubes put in her ears in November.  She is also going to have 2 different hearing tests done while she is under sedation to see if there is any change.  Do I expect a miracle that she will be able to hear just fine?  No (it would be nice though).  But I am hoping that maybe she will be able to hear a little bit more sound, or maybe less muffled.  I don't know but at least I will know that the problem was addressed.
  2.  He took an itty, bitty scope and went up her nose and down her throat.  Yes, she got mad and hated every minute of it. However, this ENT was not afraid to upset her.  He wanted answers too (or at least he was trying to make me happy.)  Either way, we got answers.  One thing that we questioned was if her vocal chords were partially paralyzed because of the raspy, hoarse, quiet voice.  He visualized them and no they are not paralyzed like I was told.  They work just fine.  So either God wanted her to be more quiet in life or there is more going on inside the voice box that we can't see unless we cut her throat open.  And that is not happening!  But for now I am happy that they are not paralyzed.  The Dr also visualized her airway. Guess what? it's not "floppy" like I was told.  He said that her airway opens and closes just the way it is supposed to.  He thinks the reasons that Sadie "snorts and sounds snotty" sometimes is that she is not swallowing her saliva appropriately and since she is mainly laying down it is just sitting there in her throat and nasal passageways causing the sounds.  I tend to believe that answer since we know she doesn't like to swallow.
  I was so happy when we left that appointment.  No, I'm not happy that she is going to be sedated again for surgery, but hopefully this will give her a little bit more hearing one way or another.  I'm also thankful that he gave me answers to other questions.

  Our next appt was with Sadie's new cardiologist.  No, I didn't fire her other one, I really liked him.  However, he moved to U of M, to design a new patch for the holes in the heart so help avoid open heart surgery in babies.  Anyways, I really like the new cardiologist.  He was very knowledgeable and kind and gentle with her. I also told him that her neurologist is pretty sure she a mitochondrial disease even though it hasn't been proven yet and that I wanted to know what signs to look for in her heart to know if it is starting to be affected.  You would have thought I started a fire under his butt.  He said we absolutely have to find out if Sadie has the disease because that will effect IF she can even have her surgery on her heart.  He now wants to watch Sadie's heart even closer and he gave me a whole list of things to watch for and to get her in immediately if we see any of these signs.  He actually kind of scared me, BUT at the same time I know he cares, he listened to what I said, and he is now going to help me fight to get her diagnosed sooner rather then later with the mitochondrial issue.  Umm, I think I love him.  At least I don't feel like I am fighting that battle by myself anymore.

So the next Dr that I am firing is her neurologist.  But I can't fire him until I find another one that is knowledgeable about her brain abnormalities and I'm hoping that he is also a mitochondrial Dr.  But that is a story for another post.









 

The Special Mother

The Special Motherby Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."

"Forrest, Marjorie; daughter. Patron saint, Cecelia."

"Rutledge, Carrie; twins. Patron saint, Matthew."

Finally He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"

"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".

"And what about her Patron saint?" asks the angel, his pen poised in mid-air.

God smiles, "A mirror will suffice."


  Side note:  I'm pretty sure I rank right up there as a Patron Saint!  Hahaha  Just kidding people. I just liked this little story and thought I would share.

My Road Map

Have you ever looked back on your life and wonder how did I get here?  I am a trauma RN.  I tell my patients all the time, "there is a reason that this happened, it could take an extremely long time to figure out why, but some day it will become clear to you."  As I was saying it to one of my patients one night, it was like a light bulb went on over my head and things started to become clear as to how I got here and why different things in my life happened.  Well this is my road map...

1.  Lived in Ohio
2.  Dad lost job
3.  Moved to Michigan
4.  Started working at Chuck E Cheese (hey, it was my first job, leave me alone :)  )
5.  Met my future husband but didn't know it at the time.
6.  Went to CMU started dating a guy that got into a really bad car accident which then perked my interest in the medical field after helping to take care of him and learning about his injuries.
7.  Dropped out of CMU because they didn't have a nursing program.  (Bummer!  I really loved CMU)
8.  Moved back home and ran into this guy that I worked with at Chuck E Cheese.
9.  We started dating.  (Thank you God for letting me drop out of school and to have worked at Chuck E Cheese)
10.  Went to nursing school.  (Thank you God for giving me the brains to be able to comprehend the medical world)
11.  Graduated and started working at a hospital that I really didn't want to work at.  (I've worked there for 6 yrs now)
12.  Worked with a woman who became a very good friend who has a daughter with Downs syndrome.  (Thank you God for putting her in my life, she became my mentor)
13.  Got married to that guy I dated from Chuck E Cheese.
14.  Remember having a conversation with my mom a year or so before I got pregnant with Sadie (although I remember it like the back of my hand for some reason) about a very dear couple to us that was possibly having a special needs child.  I remember saying "So what if that child isn't perfect.  They still will love her once they lay eyes on her.  And she will be perfect in their eyes."  (little did I know I was talking about my future self)
15.  Had 3 beautiful girls.  (Thank you God for my husband and my girls)
16.  Last baby has medical issues.   (Thank you God that I am an RN)
17.  She was born at the same hospital that I worked at and was in the NICU.  (Thank you God that I accepted that job I didn't want originally because I felt comfortable in this atmosphere with friends right around the corner, one less anxiety to deal with)
18.  Being able to know the medical field and to be able to be a good advocate for her and to know what resources to use.
19.  God also put many, many, many good people in my path at different times in my life.  Each one has contributed something to help me in tough situations.

   So that is an extremely condensed version of my life since I was 16.  My point to this post is that God has a weird way of getting us prepared for different things in our lives.  He gave me at least 17 yrs to become prepared and (I'm sure there was stuff in my earlier childhood) that helped provide me the tools to be strong and to be able to deal with some difficult situation with grace and dignity.  Different people, different activities, different conversations bring us to who we are today.  Although it feels like we live in madness sometimes, it's God's madness and His perfect plan for us.  Yet another lesson learned from Sadie.  :)

Sadie's 1st Birthday Party

   Sadie is feeling much better!  Antibiotics and a little extra TLC and she is as good as new.  Thank you God and everyone for their prayers.  I can't even tell you the size of the knot that forms in my stomach when I think she is getting sick.  I feel like I am always paranoid when it comes to her health.  Honestly, I don't think that will ever change.  Hopefully I'll learn to control my anxiety a little more.

   Since Sadie was feeling better we decided to go through with her birthday party.  Her birthday is technically not until the 28th, but this was the best date for all the family to get together.  It ended up being a perfect day, weather was good, food was good, Sadie was happy and relaxed (and not coughing) and the company was good.  All the plans came together despite my procrastination.  I can't believe all the anxiety I had over this birthday party, but I will explain that in a different post.  I choose the theme Angels because she was sent to me from God and she will always be my little angel.  I wish I would not have procrastinated because I had a lot of cute ideas, but I ran out of time.  Sometimes I could kick my self in the booty, but there is nothing I can do about it now (I always have to remind myself to not sweat the small stuff) and all went well without my little things that I didn't do.








Picture of our family.  Yes, there is a baby behind that GIANT cake!

 

Sadie put her own hands in the cake.  Not on purpose, it was because there was a giant cake in front of her and she had no where else to put her hands.  Since she does not eat by mouth she has no idea what to do.  I helped her a little bit.  Not a big fan!

 Giving me a dirty look

Giving everyone else a dirty look.
"What are you people laughing at?"

Sadie smiles. As you can see the left side of her face works really well.  On the right side of her face her bottom lip can smile, so it will partially push the top lip up so she gets a little bit of a grin.  It melts my heart, cause she tries so hard.  I call it her pirate grin.

Her sisters helped her blow out her candles and open her presents, but momma made her wish.  I wished for many more birthdays with big pirate grins.

Coincidence? I think not!

While I was pregnant and trying to decide how I wanted to decorate her room I kept being drawn to zebra print.  I mean everything was zebra: clothes, decorations, sheets, quilt, pillows, stuffed animals, pictures.  People kept saying to me "that is not baby room decorations, pick something sweet and quiet, not something to wind her up."  Well that's just not who I am, and for some reason I just couldn't get away from pink and zebra prints.  Well as I was looking for something on the internet I came across the ribbon for rare diseases, it's zebra print.  Coincidence?  No, I'm pretty sure that someone else had their hand in my desicion making.  He always has the perfect plan for us.

 

Sadie's sick

Sadie and mommy have not had much sleep in the past few nights.  Sadie is up coughing and gagging all night.  I took her to the Dr yesterday.  I've been putting it off for a few days.  Not that I didn't want her to get better, but because I wasn't sure she was really sick.  You would think that since I am an RN I should know these things.  But Sadie... she is just a hard baby to read.  This was the conversation with the Dr.  (We did not get to see her pcp because she was not in, so we one of the other pediatricians in the office)

Dr: Has she been tired?
Me: Well yes, but it could be her mitochondrial disease acting up.
Dr:  Has she had a fever?
Me: Yes, but she has a hard time controlling her temperature, due to the mitochondrial disease and the pontocerebellar hypoplasia.
Dr:  When did her voice become hoarse and she started sounding snotty.
Me:  She has a naturally hourse voice from her cranial nerve issue and she has a floppy airway so she always sounds like this.
Dr:  Has she been vomiting?
Me:  Well she can't because she has a nissin, she has been really gaggy but sometimes she gets like that due to the mitochondrial disease.
Dr:  When did the cough start?
Me:  Well it actually started 3 weeks ago as a random cough here or there, nothing major.  We (me, her PCP, and her ENT) all thought it was because of her floppy airway and the fact that she is teething and has excessive drool and she is coughing to protect her airway.
Dr:  Well, now I can see why you didn't know if she was actually sick, she's a little complicated.
Me:  And that's not even a quarter of whats going on with her.  *And I smiled*

So the Dr decided to get a chest x ray.  Sadie has bronchitis.  Please pray that this is all that it is and that it will be taken care of with antibiotics.  I DO NOT want this to be the beginning of any future respiratory issues. 

Faces of Mitochondrial Disease

Many people have asked me more about mitochondrial disease.  I found this video on you tube.  It will explain more then I can.  Please spread the word and help educate more people about it.  We NEED to make people more aware of the disease.  I want to make it as well known as cancer and get more research for it.



This is Sadie.  She is now a face of mitochondrial disease.

 

  This is one of the things she does best, sleep.  Which is a side effect of the mitochondrial disease.

 

 

HELP SAVE OUR FUTURE CHILDREN!!!

It's ok to cry

   As I was talking to a friend who is also going through a trying time in her life she made the statement that she didn't want to cry in front of her son, that she always tried to be strong in front of him.  I understood that, I also had done that.  Until I had Sadie.  Another big lesson taught by such a tiny little girl.

   Why do we try to hold our sad emotions back in front of our kids.  Are they not allowed to know we are human?  Are they not suppose to see us struggle?  Are we not allowed to show emotion?  Why are we like that?  Is crying that horrible of a sign of weakness?

   While Sadie was in the NICU I had to balance my time between 2 little girls at home and 1 in the hospital.  It was seriously the worst thing.  It's not that I thought they weren't in good hands, or that it wasn't good quality time with dad.  I felt like I had to choose between my girls (I know in reality this wasn't the case, but at the time it sure felt like it).  Who did I love more?  It was awful.

   One night I came home early from the hospital so I could eat dinner with my girls and put them to bed with our regular bedtime routine.  They missed it and honestly I missed it too.  I needed a dose of my old routine to feel semi normal again, at least for a night.  So after we ate dinner I was folding the laundry and I just started to cry silently. Why?  Just because I was an emotional mess.  The guilt I had was absolutely overwhelming.  I just wanted all my family under one roof.  I wanted Sadie home in the worst way and I didn't understand why they wouldn't let me bring her home.  As I was sitting there crying, my girls came over to me and gave me hug and rubbed my back, just in the same manner as I do to them when they are sad.  They asked why I was sad.  I replied that I missed Sadie and I just wanted her to come home and be with her sisters.  They said they wanted her home too and they began to cry (mostly Chloe).  It was the first time I saw them cry over their sister not being there. They cried about me leaving to go to the hospital to see her, but not over her being in the hospital and not at home. At that moment, I realized it was a good thing that I "broke down" in front of them.  It gave them an opportunity to grieve in their own way.  That it was ok to be sad.  We sat there together in a big hug, crying (well Aubrie for just a few minutes cause her attention span is... non excistent).

   Sadie's lesson that day was it's ok to cry in front of others, especially our kids.  It teaches them empathy, it teaches them that life isn't just roses.  It's ok to show emotion, all varieties of emotion.  It makes us real, makes us human.  Life has struggles.  It's better to learn this at an early age, and learn how to cope now, because you just don't know what life is going to throw your way and when it is going to happen.

I just want to cuddle

   Today was kind of a rough day.  Sadie is sick for the first time in her life, nothing major just a really bad cough.  A cough that kept her (and me) up all night.  It wasn't rough because of the lack of sleep.  It was rough in an emotional kind of way. 
   First reason is because I am always very aware of her respirations.  I count them, listen for the them, make sure they sound the way they are suppose to.  Why am I so aware of them?  Because that is one of the top causes of death in kiddo's like her.  So even though I don't dwell on it, it's always on the back of my mind.  But that is not the reason for my emotional day. 
   My reason is is that I just want to cuddle her, especially when she is sick.  For some reason, Sadie does not like to be held.  It has been like that since day one.  The medical world really encourages kangaroo care, especially for those micro and tiny babies that should technically be inside the womb still.  Kangaroo care is when mom and baby are skin to skin.  It does amazing things for the baby's heart rate and respirations, basically, the all around well being of the child.  Dr's and nurses very highly encourage it not only for those reasons but because these little babies can't nurse and they need that closeness, heartbeat and warmth from mom.  It's a bonding time for both of them.  I wanted nothing more then to bond in this way with this precious little baby of mine.  I wanted so badly for her to nurse.  I loved doing that with my other two girls.  It never dawned on me in a million years that I would have a baby that didn't want to nurse (or eat at all for that matter).  So when this issue came to light, I wanted to do as much kangaroo care as possible, in hopes that that would encourage her to nurse, that it would trigger some kind of a natural reaction in her brain.  Everyday I would go to the NICU, set up my curtains around her isolette, get me ready, get her ready, get my chair ready, get into position.  The first day she loved it, she layed on my chest for hours and hours.  I was in heaven!  The next day I tried, she did ok for a few hours.  The third day she only tolerated it for maybe an hour or so.  The next day and the next day and the next day, not at all.  That was the end of the kangaroo care.  I tried a couple more times in the NICU and then again at home.  She hated it!  But not only did she hate the kangaroo care.  She hated being held.  What kind of a baby did not like to be held?  I cried and cried and cried.  All I wanted to do was hold this angelic little baby that has been given to me.  Sadie had other plans though.
    I've come to except this, I still don't like it (I hate it with a passion!), but I have to except the fact that she is her own little being who has STRONG preferences.  Why should I expect her to be any different then my other two girls, they also have very strong preferences.  I don't understand it, but I try to.  I try to rationalize it the best that I can.  Even the best of my rationalizations do not make it any easier.  Maybe her ears and the loss of hearing make her dizzy or something.  Maybe her brain being underdeveloped makes her feel unbalanced when being held.  Maybe if her cranial nerves are screwed up, then maybe the rest of her nerves are screwed up too, and it hurts to be held.  Maybe since her core muscles are weak she doesn't feel like her chest has enough support to hold her body up and she feels like she is crushing hers lungs and can't breath.  Maybe because her neck muscles are weak it hurts to be held because her head falls all over the place.  Maybe since her body jerks every once in awhile because of her neurological issues it scares her and she feels unsafe.
   I can some up with a million "maybe" reasons.  I will probably never know her reason and if I do find out will it change anything?  Maybe, maybe not.  It wouldn't change the fact that it still SUCKS that she hates to be held.
   Today, I just wanted to cuddle her.  Make her feel better.  I tried.  It made her feel worse.  So I laid her down next to me and she squirmed and squirmed her way closer to me until she could touch me and then fell sound asleep.   That's her way of cuddling with me.  I cried cause I couldn't do it my way, but then I cried because she found a way to comfort me and cuddle me in her own way.  I love this little girl.

*FYI     She will let us hold her occasionally and she is getting better about it as she is getting older.  However, it is only in the up and down position, and never in the cradle position.

My 7 stages of grief

1.  Shock and denial
2.  Pain and guilt
3.  Anger and bargaining
4.  Depression, reflection, loneliness
5.  The upward turn
6.  Reconstruction and working through
7.  Acceptance and hope

When I was in collage and studying to be a psychologist/social worker I learned the 5 stages of grief.  The psych world has moved up to 7.  Who knew?!

As I was talking with an old friend from high school last night, I started thinking about how angry I used to be at the beginning of this whole journey.  I really didn't realize it or at least I didn't stop to really think about it.  Mainly because I was so busy with Dr's and making sure that nothing was being missed with her.

So here I am looking at the 7 stages and yep I've been through all of them and I'm sure I will probably go through them again a some point in this journey.

1.  Shock and Denial-  I really didn't believe all this was happening.  I had already had 2 healthy children.  I had done everything right during my pregnancy.  Dr's appt, vitamins, exercise (sort of, if you count chasing 2 little girls around and running up and down hallways in a hospital), eating healthy, no drugs, no alcohol, sleeping (as much as I could with 2 other girls).  So why was this happening to me and my baby?  This must be some kind of mistake, or bad dream.  It will be different when she comes out.
2.  Pain and Guilt- Oh my goodness!  Did I have guilt.  I thought for sure I had done something wrong.  Either I came across something in the hospital while I was working that was dangerous to a fetus. Or maybe it was all the extreme stress I was under in the very beginning, before I knew I was pregnant.  I'm not sure, but I knew for sure this was all my fault.  I was the one carrying her, it had to be my fault.  Right?
3.  Anger and Bargaining- Oh was I mad!  I had a few friends who had babies right around the time that I had Sadie.  They would post things on FB and talk about their little ones and what they were doing.  I hated them.  I was so jealous and so angry.  That's what my baby was supposed to be doing, not going to a million Dr's and being poked and prodded and having surgery.  Please God, I would do anything to change this.
4.  Depression, reflection, loneliness- I was sad, I cried all the time, I thought about stuff and what couldv'e/shouldv'e been different.  I was lonely.  No one I knew (besides one very good friend who has a little girl with Downs Syndrome) has been through this.  I had one person to turn to for advise and support.  I felt alone.  Everyone else was happy in their own world.
5.  Upward turn- One day I woke up (literally, it was the morning) and I looked outside and the sun was shining so bright, the sky was super blue, I heard Chloe and Aubrie playing in Chloe's room and laughing.  And then I heard a very soft "talking" coming from the monitor.  Sadie was just jabbering away to herself.  Everything was ok, I felt like a ton of bricks was lifted off of me.  I don't know why that morning it hit me, but it did.  And it felt great!  It was an "ah ha" moment.
6.  Reconstruction and working through-  After my "ah ha" moment.  I started on my new journey.  I no longer was trying to figure out what was wrong with her, but what I could do to make her life better.  I've always said that quality is more important then quantity. I was, and still am, determined to make sure her quality is the best that it can be.
7.  Acceptance and hope-  I accept it all.  I now realize that it wasn't my fault, and I accept that I can't do anything to "change" her, I accept that I will have to give her back to God earlier then expected, I accept the fact that I have a child with special needs, I accept the challenges that are ahead of me, I accept this gift from God.  My hope is that she feels the love that so many people have for her, that she achieves the best that she can be and that God holds her in his arms while he listens to all the prayers.

I want everyone to understand that it wasn't her that I didn't accept.  I loved her from the moment she was conceived.  I accepted her for being who she was/is.  It was the situation that was hard to accept.

That little heart that taught a BIG lesson

   Sometimes when Sadie is sleeping I will reach over and place my hand on her heart just to feel it beat.  I close my eyes (no lie, I still get tears in my eyes every time I touch her heart) and say a little prayer over it.  I have done this since the day she was born when I could physically place my hands on her. I think because I was so scared before she was born about what was going to happen with that tiny little heart.  Were they going to have to open her tiny chest and fix it right away, was it going to stop beating when she came out?  The emotions that were going through me... I still get choked up thinking about it all.  Luckily, her heart was not as bad as they thought.  The hole was not as low in her heart.  They originally thought the hole was between all 4 chambers.  It ends up that it is right above the 4 chambers, between just the 2 atrias (ASD).  "The hole is in a safe place", the Dr's tell me, "The oxygenated blood is mixing back in with the unoxygenated blood verses the other way around, so her heart is working twice as hard as it should, but at least the blood that is coming out is oxygenated.  Otherwise, we would have a big problem".  So for now her heart is beating strong, she has not had any issues.  In fact, you can't even hear a murmur.  So if it wasn't for finding it on the ultrasound, we probably would not have a clue it was there.  The Dr's say that she will need to have it fixed, but not until she is closer to 7 yrs old unless she shows signs of having problems then she will have to have it fixed sooner.  For now we just pray that it stays strong.
   This also changed the way I look at Chloe and Aubrie's hearts.  I now hold their heart every night to feel it beat as we say our prayers.  I thank God every night for every beat of their hearts, not to take one beat for granted.  I am so grateful that I have opened my eyes and now take the time to feel their hearts.  If it wasn't for Sadie, I probably would have never done this.  One more wonderful lesson that Sadie has taught me.

SWAN by any other name...

'Tis but thy name that is my enemy;
Thou art thyself, though not a Montague.
What's Montague? it is nor hand, nor foot,
Nor arm, nor face, nor any other part
Belonging to a man. O, be some other name!
What's in a name? that which we call a rose
By any other name would smell as sweet

My 9th grade English teacher would be so proud of me right now.  I actually remembered something from Shakespeare.  I couldn't remember it then, but I can remember it now.  Go figure.  LOL

SWAN stands for Syndrome Without A Name.  This is Sadie.  She is my SWAN.  She has many diagnoses, but none of them add up to just one overall syndrome.

This use to really bother me.  Not so much because there is no name, but because I wanted a road map of what her life might be like.  What I could expect next.  I wanted to know what I should be looking for.  However, as time has gone on, I've realized that she is her own little person that has yet to match up 100% to any of the diagnoses that she has been given.  So even if the medical world did give me an actual syndrome name for her, would she actual match up to it?  I doubt it.  So would I have a road map for her, no.  So I stopped obsessing about finding a name.  It was a waste of my time and brain power. And now when people ask, I say she has what they call the Sadie Syndrome.  Some people get it, some people don't.  Some people actually say "wow, how ironic is it that her name is the same as her syndrome."  I just smile and nod and say "i know, weird".

So would my SWAN by any other name be as sweet?  Most definitely!  For now I am fine with her being my beautiful, perfect SWAN!



 

Just smile and nod

  When I was younger it used to be a joke between my friends/family and myself when someone said or did something crazy or weird we would "just smile and nod" at each other and laugh.  I'm sure you have probably heard the saying yourself.  Well, I find myself doing that a lot lately.  I used to explain stuff to people/strangers when they would make comments or ask questions about Sadie.  But now, depending on my mood, I usually just smile and nod and agree with them.  Like when they say "what is she about 5-6 months old".  I just nod and agree.  In reality she is close to 1 yrs old.  Or when they say "oh she is so sleepy and cuddly".  No, in reality, she just can't hold her head up and she hates to cuddle.  "Oh she looks like she has been crying, or did she just wake up"  No, reality is, is that she has weak muscles around her eye on that right side and she always is "squinting" and it looks swollen.
  Who would have thought that years later I would pretty much be living my life by that saying because it makes life so much easier.  It makes me laugh. 
  So just remember when you don't feel like talking, or when someone says something stupid, don't get annoyed and irritated. It's sooo not worth it.  Just smile and nod!

Those darn cranial nerves

I must apoligize first, this is a really long post.  I actually cut it down a lot, but it's still pretty long.  So if you read the whole thing, thanks for hanging in there!

  Who really knows what those cranial nerves do (unless you are a Dr)?  I certainly had no clue exactly what they did.  I knew we had 12 pairs of them and I knew they were in the head, but I really didn't know exactly what they controlled.   Thank you to Sadie (she is the best teacher), I now can tell you each of the cranial nerves and exactly what they do. 
  It began while we were in the NICU.  At first we didn't see it, but as a day or two went by we got our first glimce that there was more going on then her heart and cerebellum....  First she had the CPAP on, so we couldn't see her whole sweet face.  Luckily, that was discontinued within the first 12 hours or so. Next, Sadie wouldn't eat/suck.  So they inserted a feeding tube into her nose and taped it acrossed her face.  Again, we couldn't see her whole sweet face.  That is how I saw her everytime we went to go see her.  One early morning I went down to the NICU to do all her morning care and Miss Sadie was restless.  She pulled that tube right out of her nose.  Who could blame her?  She calmed down and fell right to sleep in my arms.  I stared and stared at that sweet face, falling more and more in love.  First time I saw her whole little face (her head was only the size of a large orange).  And then she cried, something wasn't right.  At first I thought it was my imagination and then she cried again. I then started freaking out.  I called her nurse over and told her I thought she was having a stroke.  Demanded a CT or an MRI and to call the stroke team.  Her right side of her face wasn't moving when she cried.  Her eye wasn't blinking appropraitely.  The side of her mouth wasn't moving.  I started balling my eyes out.  The RN put her arm around me and gave me a squeeze and said that she wasn't having a stroke.  She has been like this since she was born.  What!?  How did I not notice and what was wrong with her if it wasn't a stroke?  I also noticed during this same little episode that her cry was very quite and her voice was very hourse. No one could give me any answers but they did reassure me that she didn't have a stroke.
  After we were released from the NICU and we went home I gave her a real bath for the first time.  I accidently got water in her eyes.  She didn't really seem to care.  Good, I thought, at least she is one tough little cookie and doesn't cry about water in her eyes.  Well, come to find out later when we went to the opthamologist she has no feeling in her eyes.  You can touch them, and put eye drops in and blow on them and she doesn't even flinch.  Weird!  She doesn't really blink appropriately either.  You can't tell unless you sit and stare at her for a while.  So needless to say we had to start her on an eye regiman where we clean them and put eye drops in several times a day cause she is unable to clean them and keep them moist on her own.
  Then came her hearing issue.  We knew when she was in the NICU that she failed her hearing screen.  So they ordered a more intense test, a BAER test.  She failed the first, she failed the second.  They then ordered a sedated, comfirmative BAER test.  That is when it was confirmed that she has auditory neuropathy (deaf).
  Then came time for her to start trying to eat oral foods.  As I was giving her different tastes of the foods she was making no faces, like babies make when they taste foods for the first time.  Hmmm.  Thats a little strange.  Then I was mentioning this to one of her Dr's and I also said I wonder if she can smell.  So we tested her by putting an ammonia stick under her nose.  She didn't even budge.  Hmmmm.  Again that's starnge.
  As I am mentioning all these things to different Dr's they all say "oh that's cranial nerve number _".  Slowly, I started hearing all 12 cranial nerves named.  Each time they added a nerve they would also add "this is very rare to have this".  I eventually started to expect the words "rare and unique" at the end of all her Dr appts.
  So pretty much all of her senses (except touch) are screwed up, at least on that right side.  Well, technically smell and taste are guesses, but thats the way things are seeming to lean.
  What is the reason behind the cranial nerve issue?  That's a darn good question.  I can not seem to find a Dr that really cares enough to look into what the problem really is (don't worry I'm still on the search for one). This is the Dr's best answer... her cranial nerves mainly start in the area of where her pons is on her brain stem which they are guessing that since this area is underdeveloped that means her cranial nerves must be underdeveloped too.  So for now I am excepting this answer until I can find a Dr that cares enough to actually look into it further.  The reason that they give me for not looking more into the issue is that since you can't do anything to fix cranial nerves, why look for the problem.  I don't like this answer, I'm still searching.
  So that is a short lesson on cranial nerves.  They effect hearing, facial movement, swallowing, voice box, eye reflexes, smelling, tasting.  And there is much more that they do but that is the run down on what seems to be effected on Sadie.  God bless this little girl.

A balloon sent to heaven

  We celebrated Chloe's 5th birthday on Sunday.  We had a bounce party and then we went to the park to play and to eat cake and ice cream.  Her theme was Pinkalicious (if you don't have little girls you probably have no idea what I am talking about).  As we got out of the car Chloe's Pinkalicious balloon escaped the car.  My husband grabbed the string.  Phew, that was a close one.  Everyone files out of the car.  My husband goes to put the balloon back in the car and all he is holding is the string.  We look up just as the balloon is flying over the top of the tree.  OH NO!!!  Chloe bursts into tears.  You would have thought it was the end of the world.  She usually doesn't act this way, but she was overly tired.  Well after a few minutes of hysterical tears, she calmed down.  We explained that the balloon was up in heaven with Jesus and we would get her another balloon later this week.  With a couple of deep breaths, she sighed and said ok.  We went about the rest of the afternoon.  She totally forgot about the balloon, and life was great again.
  Monday, we are driving in the car singing songs and laughing.  Then Chloe gets all serious and says  "Mom, do you think Jesus wanted my balloon to give to another little girl in heaven for her 5th birthday?"  The question at first caught me off guard, and then I thought about it and said "Yep, I sure do".  She replies "That's what I thought.  (She paused)  It's ok that I shared it with her, we don't have to get me another one."  She then went about her singing.  Tears welled up in my eyes.  Here is a little girl, only 5 years old and she is way beyond her years in giving, understanding and what a huge heart she has.  I couldn't be prouder of the little lady she is becoming.