What a 7 hour ER stay taught me....

I really want to do a post about our ER visit Tuesday, but it was so emotionally exhausting!!!  It makes me so angry and reliving it just stirs the same feelings over and over.  I kept thinking "How can I take this anger and resentment for then and find the positive in it?!?!"  I mentioned before all the things Millie is teaching us in our daily lives... and this morning on my coffee cup I have the adage "Be the change you want to see in the world..." and said "damnit I'm gonna try!"  And let me say this post did NOT start out as the following finished product, it is, as always, a work in progress and THIS is how it progressed:

I learned yesterday that the meaning of the word "educate" stems from the Latin word "educere", which is a combination of 2 words "e" meaning out, and "ducere" meaning from within. Together "educere" literally means "to lead forth from within".  Think about that for a moment...."educate" ORIGINALLY means to bring out from WITHIN.

Society has bent and misrepresented this word to lead us to believe that OTHERS "educate" us, like it is something physically done to us.  However its the opposite; educate is to bring forth what is IN US, what already exists!!  (MINDBLOW!!) "Educators" find the potential in each of us and help us tap, explore and harness that which is within us, the knowledge we all have.

So I wondered...how did this beautiful word 'educate" come to be so mangled that it is used AGAINST us?!  I have some ideas, and I know it has taken centuries to come about.  And what if its not only this word, what if OTHER words have been used and abused, manipulated to distort our perceptions and thoughts....it's essentially slight-of-hand, something SO minute that no one notices originally, but when left unchecked becomes a monster.  

Now this could lead me talking about standardized tests in public schools or the government or the fact that we all need to learn to listen to our own inner guidance more and exterior stimuli less or even that we need to set aside our egos and learn to listen and embrace other's ideas....but I'll let it take you where ever you feel like it should....

It may seem this post strays a bit from discussing what is going on with Millie and what the 7 hour ER visit was for...au contraire.  The 7 hour ER visit was initiated by our pediatrician.  She had a low rectal temp so they sent us to the ER.  Her temp at Vandy Children's was normal, blood work within normal (higher platelet count, white cell count slightly high), chest x-ray appeared "cloudy" but sputum (snot) samples were normal, flu panel negative, waiting for RSV panel but it will take a few days, urine panel normal.  We left with no diagnosis other than she may be coming down with something and to keep and eye on her.  However, after much thought, it appears the 7 hours was to allow me time to read and learn and I would NOT have taken that time had I been home.  Thus, Millie is allowing me time to learn, discover and grow.

...and THAT folks is the good I found in the 7 hour ER stay!  

My question to you is what are you writing off with anger?  Is it a person, a job, an idea you had or possibly an idea someone ELSE had??

I finally found the good in Tuesday, though stewing over it that night and even while trying to write this post was unpleasant   I write SEVERAL posts that I never publish, almost like a journal.  Through my editing of this post is how I found the beauty in Tuesday, almost like a light bulb that just CLICK! turned on.

Maybe you should start a journal and see what you can learn from those bothersome encounters you have today.  That's what Marvelous Millie is teaching today...to take time to learn.

XOXO Millie and Mom

Millie turns ONE

Wow...ONE!  

I've thought about this post for some time....and like most days I am reminded of how different we envisioned Millie's 1st Birthday.  Should I write about how "weird" it feels, should I write about how our lives are different....but I want to write a birthday post like I would for Neal or Sam... after all, that's what Millie deserves, to know how happy we were on that day, waiting for her to be with us :)

I woke up on the 5th and instantly knew she would come that day, in fact, I called Penn and told him.  (Side note: I miscarried our last pregnancy whose due date was 8/24, and see the boys birthdays are 7/29 and 8/29, mine is 6/3 and Penn's is 9/26... kinda all together.  So, once we healed from the loss we said it would be nice to have a birthday separate from the others, maybe like, I don't know...in March!  And we did NOT plan Millie to have a birthday in March!  Now, I believe in all kinds of divine recognition and 3/6/12 is also great numerology, and they are all multiples of 3- a number meaning divine perfection...Also, it is the exact opposite of mine- 3/6 and 6/3!  Coincidences?!  I think not....)

I was even so sure I went in and told my boss I was in labor and might have to leave to go to the hospital.  Yes, I went in to work that day LOL!  I figured it would be better than sitting around waiting for labor to kick up.

Most of the day is a blur...work, emails, phone calls, chatting with work buds...I do vividly remember getting in the car to leave, a bit early, and as soon as I did I felt the first light contraction.  

Once I got home, they intensified a bit, but still manageable.  Being evening by that time, my mom came over to stay with the boys in case we went in during the night and I called my midwife.  The midwife on call said to take a bath and then see how I felt.  I kinda giggled...I knew I was in labor but wanting to labor at home as long as possible (without giving birth unassisted LOL!  If you remember from before, we have very quick births that have always been at home and Penn's BIGGEST fear was that HE would have to deliver the baby!)

Penn kept asking do we stay or do we go?  We were both tired so I said lets lay down and see how it goes....just as Penn had fallen asleep I said OK, lets go.  We let my mom know we were going and got in the car.  It was pretty late by then, about 11:45 PM, so no one was on the roads (which was MY biggest fear, traffic!!) so we zipped on to Vanderbilt and got there at 11:57.  I did not like laboring in a car...those of you women who have done that before,you are awesome!!

They sent us to delivery check in where they placed us in a monitoring room.  I specifically asked for NO monitoring (that belt you wear with all the wires...) but they said "its policy" and said it would only be minimal.  An HOUR AND A HALF later I still had the belt on and had to push...  They said there weren't any rooms available and they were looking for a place to put us...busy night!

I told them I needed to use the bathroom so they unhooked me, however once I sat down I knew what was happening....I couldn't get up and they finally came to check on me.  I told them I was ready to have this baby.  They said a room was available and let's go.  I started out walking, since it is better for labor, but being that I was fully dilated at that time, decided to take a ride in the wheelchair (though I dont think I actually sat in it, just kinda hovered over the seat!).

Once we got in the room I headed RIGHT for the bathroom.  The nurses said "Now Nicole, you cant have that baby in the toilet!"  I told them I could not possibly LAY on a bed.  Since I couldn't really explain at the moment how I liked to give birth, Penn was a life saver!  He told them in what positions we had delivered the last two.  They raised the back of the bed and said to lean over it, I did, it felt like heaven!!  

Its a bit of a blur but I think they said "you can start pushing now" and they yelled for a midwife.  Once the midwife came in and gloved up, my water broke like a tidal wave, they said there was meconium in the fluids, asked if this was normal, I said no.  I think I pushed twice, it was 1:56 AM and Millie came flying out so fast she startled the midwife!!

They instantly cut the chord (not at all in our birth plan) and took her over to a bunch of nurses who where suctioning her out.  Penn said they kept saying "Come and see your baby!" but he said there were so many nurses around her that he couldn't!! She did not cry, I remember that.  She was 6.5 lbs, much smaller than the boys.  But LORD was she pretty!  Penn and I both declared her to be Sam's twin!  Nurses cleared out, I turned on Pandora to my Louie Armstrong channel and Penn and I breathed her in :)

I won't get into all the other issues, they don't matter much anymore...this is the story of how Millie entered the world, displaying her personality and determination....at full force!  Making funny faces, because she is Silly Millie, and a bit quite, not much to say but when she speaks you better listen!  

I can say that we had never imagined we would learn so much from such a tiny little person.  I've learned to appreciate the very small and simple things each day.  She has opened up a world we didn't know existed...a world most people don't know exists.  She teaches us something new everyday, and not just about her but about ourselves.  She has shifted many of our beliefs both big and small.  We are so very grateful to have her with us :)  I've said before we are waiting for a miracle but we are learning the miracles are happening, within us...and all thanks to our Miss Millie.

I want to thank ALL of those who have donated to Millie!!  Our family, FB friends, Sylvan Park friends, friends old and new and those who are anonymous, Thank You from the very top, corners and bottom of our hearts!!!

And now, PICTURES with theme music!  (sorry for the arrangement, they have a mind of their own!!!) 

Getting some love from Neal <3

Sissy and Millie on Christmas Eve,
you can just SEE the love from Mill!

Halloween, shes a ghost!

Millie has LOTS of great outfits...

and LOVES to show them off!

She's the Cat's Meow!

Happy Girl!!

Our week in Queen City (Cincinnati) and Children's (that's what they call it)

It started off on a yucky note, on Monday morning as Penn was bending over the portable crib to give Millie her meds, his back went out :( so that sucked.  And then I mis-read the instructions for the first test on Monday morning and fed her when we weren't supposed to, so we had to wait an additional hour to do to the test, which was a Gastro-emptying Scan (which is exactly what it sounds like- it monitors how long it takes for her stomach to empty into her bowels). And THEN we found out someone broke out Penn's truck window (but didn't steal anything)!  UGH....but let me break down the week...

Garfield Park

Monday- Gastro-emptying Scan:  Quite simple.  We feed her the formula with a little bit of contrast in it and she lays on a camera that takes an hour long video of what her tummy does.  It looked like little fireflies or stars in a night sky (on the monitor).  It would also be able to tell if she was refluxing, which we didn't see at the time.  The tech told us at the end of the hour, they like to see at least 60% of the stomach contents emptied into the bowels, and if not then they let you hang out for an hour and take a picture at the 2 hour mark.  After Millie's one-hour film debut was over ;) she had emptied only 22% of her stomach!  

To give you an idea of "average", it should take about 30 minutes for your stomach to digest its entire stomach contents.

So we hung out, ate lunch, and went back for the 2 hour picture.  At that time she had emptied 52% of her stomach contents.  Of course, the tech was not at liberty to tell us anything (other than Millie's results are not atypical, hence WHY they do the test) and that other info gathered from the test go into the reading of the test.  

Then we went back to the hotel and rested!

Tuesday- Chest MRI in the AM:  requiring anesthesia.  Did NOT mess up feeding instructions on this one!  And Millie did great!  They decided not to do IV anesthesia as her veins are scarce and they wanted to save what she had for the triple-scope on Wednesday.

We went back to the hotel after to rest before the next appointment and to feed Millie and poor thing, she threw up :( It was my fault, the water we gave her did fine so I fed her and I think it was too much....bad mommy!

Pulmonology meet and greet in the PM:  We met Dr. Torres, her new pulmonologist, and we really liked her!  She went over everything she would look for during her portion of the scope.  She took a look at Mill and said her jaw was a bit recessed, and she suspected that to be the cause for obstruction during breathing, causing the back of her tongue to close her throat, as well as her feeding issues.  She said its hard to get good suction with her little tongue just a bit back.  She also pulled up the MRI pics taken in the AM and went over them with us.  Overall, she said Millie's lungs looked good!  She did highlight some areas in the lower lung that were "closing" with either aspiration from saliva or from low muscle tone (not taking in a full deep breath so not expanding the full lung capacity).  She said Millie wasn't in danger of anything soon so that was great to hear :)  She went over some possible options for the future if things did not change.

It was a LONG day and we were tired!!

Wednesday- Pre-op for Triple Scope: Did I mention Cinci is East Coast time?  And that we woke up every morning at 5:30?  That's 4:30 our time....so yeah.

Pre-op was pretty easy!  We checked in and went directly to a pre-op room for a little while (about 2 hours) and did all the checking and re checking and vitals and re-do vitals, filled out forms and talked with all docs and anesthesiologist.  I think we were both (Penn and I) pretty calm about it, after all it was her second scope (she had one in April as a tiny baby) so she's a pro at this.  They let me walk her to the OR room and give her a kiss before they sent her to La-La land :)  

Overall they expected it to take 64 minutes (yes, odd number huh!) and that included time for IV and everything.  They said the docs would call us in after their individual looks and go over their findings.  So, after about 45 minutes and NO name call we got a bit nervous....and then remember they had to do an IV so that probably took 43 of the 45 minutes LOL!  They eventually called us back (shortly after) into the conference room.  

back of tongue blockage

The ENT doc said he was concerned about her saliva and aspiration, and looking into the future, to make SURE there is not aspiration they gave us a few options; Robinul (a med that dries up saliva), botox (yes, like THE botox!  It plumps the surrounding area and pinches the salivary glands ), tying of the salivary duct, a "drool" surgery (where they remove the salivary glands) and a tracheostomy (there they put in a tube for you to breath through, and you can suction out the tube).  And he mentioned one more that we weren't quite clear on....something about they separate the trachea and voice box and bring the trachea to the outside but you can never use your voice box again....but that is a worst case scenario, so anyway. 

(Keep in mind these are options, from least to most invasive and listed in form of severity.  Millie is NOT there but if things continue to progress, or lack progress, these are options.)

GI went next.  He said basically the Nissen surgery has not completely kept the reflux from occurring.  He pointed out there is erosion in her esophagus from current reflux, he prescribed Prevacid.  He also said he wanted to do an Upper GI next time we were there to get a better look at what the reflux is doing (which will be next week) But otherwise said everything looked good!

the scar looking ridge on the right is the erosion from reflux

the inside of her belly,
 that bubble is her  button balloon

the bubbles at the
bottom are saliva

Then went Pulmonary, Dr. Torres.  She said Millie actually looked MUCH better than she expected!!  Who doesn't LOVE to hear that?!  She said there was some saliva in her throat, but no inflammation, which means it's not sitting there (either we are suctioning it out or she is getting it out, GO MILLIE!!).  She also said since Millie had low muscle tone she had expected to see some internal muscles collapsed, but she did not :)  She said the scope proved what she suspected, that the base of Millie's tongue is causing problems with breathing and aspiration (when she can't breath, and finally takes a BIG breath in, it sucks the saliva that is there down into her lungs).  They did a lung flush, where they take a bit of saline and squeeze it into the lung and then suction it out.  They will test that to see what is in the lung...food or stomach bile or saliva...

They summed it up with her anatomy looks good, they believe it to all be neurologically based (which was not what we were hoping to hear, but with the right anatomy there, she can DO IT!!)  

Post-op Triple Scope: When we got back to post-op, she looked totally adorable!!  They had her propped up on her belly with her bum in the air, making it easier for her to breath.  The nurses were FABULOUS!  They said there was an IV in her thumb so to be careful.  I asked if they were going to get all the labs while she had an IV in and she said "what labs??".  

I told her Millie's dietitian wanted to test a bunch of different labs to check things and so she made several calls until she found the right person and got an order for the labs...like I said, fabulous!!  Though she was VERY skeptical that we were going to get the blood we needed (which was a LOT!) from the thumb IV, so she called Vascular Therapy (they are a special team that finds tiny veins in little itty-bitty people).  They gathered all the appropriate tubes and equipment needed to get started.  They capped the IV drip and went to remove it from the IV port and Millie's thumb IV started to GUSH LOL!!  They quickly grabbed a syringe to start collecting the blood.  At the end, they were able to get ALL the blood...and EXTRA from that little thumb IV!  That made Millie quite the tale around there...The Little Vein That Could!  :)  Penn couldn't look because it was quite a scene! Blood everywhere and on everything LOL! But we got what we needed!!  GO MILLIE!  Again, achieving the improbable!!

We made sure to add in a CBC (standard blood test) for her platelet count and it CLOTTED before the tube even LEFT the bed!!  (At last count her platelet count was back in the 1.4Mil range!)

We finally were discharged and went "home" to rest as the next day was another early start which would include packing to go HOME!

Thursday- FEES Test: 8AM- This is with ENT, where they stick a tiny scope down her nose and try to get her to swallow to see what's going on.  It didn't happen LOL!  Well, the test happened, the swallow didn't :(  So we are not going to start mouth feeding for the time being, but wanted to keep going with a pacifier and baby toothbrush and even an empty spoon...to get used to the stimuli.  (Physical therapy says as we gain head control, we will have better luck swallowing.)

Neuro and Genetic Follow Up: 9AM (running late) We LOVE these people!! Everyone on the team is GREAT!!! The nurse, Shirley (who we talk with on the phone when we have questions), our genetic team Dr. Burrows and his Nurse Practitioner, and our neurologist Dr. Hallinan...they are all wonderful!  First let me say that ONE of the reasons we like them so much is because they respect Penn and I as Millie's parents.  Case in point, one thing Dr. Hallinan mentioned was that we should not let any Dr pressure us into anything.  She said to take our time and think about what we feel is best for Millie since we know her best.

Anyway, they were glad to see Millie, said growth is good, though weight has plateaued, so we are tweaking her formal for more calories.  Also, needed to tweak to try and get higher ketones (google Ketogenic diet).  If we could get higher ketones then we could back off one of her seizure meds, which is GREAT!! 

Her neurologist asked to try and keep Millie awake for her next appointment, she has seen videos and pics but wanted to meet Millie in person (to make her own evaluation).  

As for test results, nothing yet.  They sent her MRI to a neurologist in Washington who looks at MRIs to see if he can match them up with any syndromes or diseases...anything to give "it" a name.  The team doesn't think he will be able to identify anything, but its worth a shot.  They feel our best bet will be a Chromosomal test, the one where they spin all the chromosomes out to find any and all abnormalities.  

Of course, insurance denied payment BUT it just so happens that Cincinnati Children's Hospital is doing the SAME testing for research and so the team anonymously submitted Millie as a candidate!  They said they "knew we'd be cool with it" LOL!  They feel she has a great case for being accepted and hope to push her through the application committee so that when we get there next week we can do all the blood work.  The testing process takes 6-9 months, but we're in no hurry....

Feeding Team Appointment: 10AM (by now it was 11A!)  We met with the feeding doctor who said according to the FEES test, the visit would be short, but maybe by next follow up we will be working more on it :)  She did however happen to take a look at Millie's bum and decided to call in a Nurse Practitioner they call "the Butt Queen".  Wendy the Butt Queen took one look at Millie's poor bum and said "we have a problem!".  She diagnosed her with a yeast infection (though 3 different pediatricians had said she was negative for yeast).  So, she prescribed some major league bum cream and Nystatin.

...we went to lunch in the cafeteria and then we were in the car and headed HOME!!  

Overall, we had 4 new prescriptions called in!  Just got a call that the lung flush showed saliva aspiration so they are treating with an antibiotic....that makes 5!

As for next week, we head up again Tuesday afternoon 3/5.  Millie has a hematology appointment at Vandy in the morning so we will leave after.  She has an Upper GI in the AM and the sleep study in the PM Wednesday, and we will head home Thursday morning 3/7.  In case you didn't notice, poor Mill will be in the HOSPITAL on her BDAY, 3/6.  I guess its appropriate since that is where she entered the world LOL!  

I am going to once again put the link to her DONATION page here.  What she really wants for her birthday is therapy :) not toys or clothes (well, maybe clothes LOL!).  We did not expect to go to Cincinnati so quickly when we had to cancel in January, we were told it wouldn't be until April or May, so we are thrilled to find out it was February!  ...and did NOT expect to go back so soon, though again are glad.  Needless to say a fund that we previously set up for therapy has gone to medical travel.  We SINCERELY appreciate the large donations, but it can be whatever...$5, $10, $25...we thank you ALL :)

Overall, it was a L O N G and tiresome week.  We got some answers, not what we had hoped but we are glad to hear it is all "good".  The diagnosis that all of these issues is neurological is a LOT to digest.  That means something is not "normal" about her brain...that's scary as a parent!!  BUT, as we told the neurologist, she wouldn't fit into the family if she didn't have her own unique attributes...and BOY does she LOL!!  The POSITIVE here is that with everything being in good working order, we can work on therapy, which is probably going to be her biggest help to get things headed in the right direction.   And we have LOTS of it lined up!!  Some we can afford, others we can't but are hoping to...we leave each day up to it's own accord and hope for the best :)

I also saw something inside one of the clinics that made me smile and cry at the same time...it was a poem by Shel Silverstein.  The funny thing is this poem has been my MOST FAVORITE for 20+ years :)  And to have it engraved on my heart at a time like this just goes to show you EVERYTHING has a reason: