Back to the hospital...

So yesterday we wound up back at the ER with our second ambulance ride. Millie had a great weekend, there were a few oxygen issues Sunday morning but nothing else. Around 3pm her heart rate started going up and she spiked a fever. We put her in the car seat to go to the ER but she had a big oxygen drop and we decided maybe this time it just wasn't worth driving, her heart rate was now at 240s so we called the paramedics.  Blood tests showed that her white cell count and platelets were really high (usually means infection).

They decided to admit us to try and get to the bottom of the infection. Her blood work this morning showed a drop in both her white cell and platelet counts; so the Dr.'s are a bit perplexed about what to do. They feel it is 2 separate events (last hospitalization and this one) but are trying to figure out why the counts spiked then dropped.  We are waiting for infectious diseases to make some decisions on how they want to approach her. AND, she has her first tooth!!!!! (Finally something "normal" LOL!!!!)

As for her therapies, we have some wonderful things lining up!! I think the spring is going to be really helpful for her :) THANK YOU ALL!!!!  We are starting with an Osteopath in March as well as seeing an ABM instructor that is traveling here (so no traveling for that just yet!!).

As well, we will be planning the big 0-1 bash!!! Little baby girl is turning into a big girl!! 

Here is a link to her fundraiser.  Since her birthday is coming up we are asking for small donations to help pay for some of her appointments we have coming up.  Anything is appreciated, $5, $10, $25...whatever!!!  Thanks again SO much :)

Do not fear the wolves

Yes, it has to do with wolves and fear. There is a revelation at the end that does pertain to Mill, but the way it all went down is why the story is so relevant.

We went to a bonfire at a friends house in October.  The boys were VERY excited.  They have had bonfires in Mississippi on the farm, so this concept wasn't new to them...in fact they love it!  It was however their first bonfire with school friends.

Finally the day came and all I heard was "Is it time yet?" "Is it time yet?" "Is it time yet?".  Penn and I decided I would take the boys since he wanted to stay home and hang with Millie (dark, cold and smoke=no good for Mill LOL!) so the three of us, Neal, Sam and myself, left to go roast hot dogs and make s'moores.  I just knew the boys were going to be in heaven...they love playing outside and with flashlights, and our friends are really creative so I figured I would have to drag them home screaming.

Our little fox friend

To give you a mental picture, our neighborhood is an older one so it is quite wooded and we have a menagerie of wildlife around...huge bucks, deer, rabbits, hawks, foxes and coyotes.  We see most on a regular basis but it never ceases to amaze us at the nature conservatory in our own backyard!!  I mean, we live in the middle of Nashville!

It started out as fun as I imagined :) We were enjoying our friends, the kids were running back and forth from the house to the fire.  It was dusk and the kids were chasing each other and pretend animals down the creek and back. I don't really know how it all got started but the kids were all talking, very matter-of-factly, about wolves in the woods.  One thing led to another and the next thing I know Sam is in my lap by the fire crying.  Not too bad at first.  All the talk of wolves had scared him because we've seen lots of animals in the neighborhood.  I was able to calm him some and we talked about trusting mom and how mom and dad wouldn't let wolves eat him... so he decided he just wanted to go sit inside the house.

A few moments later we all hear a "MOOOOOOOOOOOM!!!" coming from the house but before we could even get up from our seats here comes Sam like a bat out of hell! Apparently there had been a knocking sound in the house and the kids told him the wolves were coming to get him.  He was clawing at my shirt, pushing and pulling, hysterical that the wolves were going to get him.  He almost drew blood scratching at me trying to get me to our van!  Balling his eyes out!  I tried my very best to calm him.  I was actually crying from laughing so hard at the scene!!  (I didn't let him see me though, wouldn't dare let him think his fear is funny to me.)  In his mind, just beyond the tree line there were HUGE gnarling wolves with blood dripping from their teeth waiting to pounce on his little body....

It broke my heart that as much as I tried to console him and get him to trust me, his fear had taken over and he was completely irrational.  It made me sad to see him so afraid of something that I knew, beyond a SHADOW of a doubt, was not there!!

I knew there was no hope but to leave so I graciously thanked our host, who was apologizing profusely (poor thing LOL!) and carried my crumpled heap of Sam to the car, Neal following in tow repeating the familiar childhood mantra of "I didn't do it...".  (Which we all know means "I did it.")

Penn was surprised to see us home so early yet was more surprised to see the red-eye boy I was still carrying in! We had another talk with him about trusting his parents and how we would NEVER put him in danger.  He was much more open to this talk now that he was safe and warm in his bed.

Where's the revelation?  The day after I was thinking through the scenario... how worked up Sam was, how I rationally knew that there are no wolves in the woods.  I mean, come on...think of how absurd it is for your child to think that a WOLF was going to come into your backyard during a party and get them...

Being the adult in the situation, I had the knowledge, experience and wisdom to know what Sam does not.  And then I thought about Millie.  Sometimes I get so worked up with worry, fear, sadness and grief that it can literally be consuming....could it be that I am fearing the wolves???  What if I were Sam in the situation and my inner voice, the one I hear telling me she will be fine, is my "adult", my "God",my "Superior Being", the one I trust, the one with the knowledge, experience and wisdom of a situation that I do not have???

It was then that I decided I would NOT give into the fear...those blood suckers I can't see that aren't even there.  Everyone has them; jobs, bills, judgments, tasks, people we love....all those things we think about and are scared of.  But you see the problem is if we don't nip the fear in the bud, it takes over....our thoughts become hysterical and irrational.  Some turn upwards to God, some turn inwards to their own spirit; but whichever you choose you have to know that the fear is not real.

Next time you feel it bubbling, the wrench in your gut as you approach a situation, think of Sam, and listen to your "adult", just know it's fear and it's not REAL.

I hope it help :)

XOXO Millie and Mom

How to Help....

"How can we help?"  "What can we do?"  We get these questions a lot!

We have been so blessed throughout our journey (you will hear this a lot!).  Sissy (Millie's Aunt Sarah) was running in The Color Run, a fun and family friendly race where you start out in white and they throw a different colored dust on you at each K mark...and made these FABULOUS shirts!

BEFORE

They say  "Miles for Millie".  She did a phenomenal job!!  We LOVED 'em and sold them on a fundraising website with tremendous support!!

At the end of the race, this is what they looked like :)

AFTER!!

We also have a great friend who is a very gifted photographer with Antebellum Photography, she did a fundraiser called Mini Sessions for Millie!! These are some of the shots...HOW TALENTED is this lady?!  Breathtaking :)

That fundraiser was, in essence, a lifesaver!!  The sessions booked SO quickly and everyone so was loving and supportive!!  It helped so much, especially with me living at the hospital and our first trip to Cincinnati.  

It has been a bit of an adjustment, me not working.  My income supported the family, as well as provided WONDERFUL insurance, that's gone now.  My husband owns a small landscape company, he does amazing work but we have had to put that on the back burner to tend to Millie.

But Millie has a few more medical needs that we must provide for (aside from medical bills...won't get started!).  We had to buy a new travel system complete with a car seat and stroller.  The car seat provides more support in specific areas since she has a compromised airway, it helps her breath for those 4 hour car rides to Cinci, 3 hour trips to Memphis and 5 hour trips to Mississippi, not to mention just going to and from doctor appointments and school.  (Unfortunately we haven't visited family much, its just a bit hard....we miss them ALL terribly!!)  The stroller is wonderful because it is one of the few that lays complete flat!! This allows her to lay on her side (since she can't hold her head up) and breath easier.  THIS has been wonderful for getting her out and about (when we can.)and trying to keep some sort of normalcy with family life.  (NOTE: The car seat works for now, and I hope it stays that way...but it may not be the answer.  It may be that we need a more medically specific car seat which ranges in the upper hundreds to thousands.)

One of our next purchases will be a pack n play.  At the moment, she and I sleep in the living room, on the couch (me) and love seat (Mill).  Why not the bedroom?  I need to be on eye level with her and have instant access to her, this isn't possible with a traditional pack n play.  The problem with most of them is the inserts are half way down... we need a pack n play with a "bassinet" insert as close to the top as possible so when she needs suction or intervention she is easily accessible and we don't have to move her.  I would really like to sleep back in the bed (LUXURY!) with the pack n play next to me, so I did some research and found a pack n play brand that was recommended for infants with medical needs.  Bedroom! HERE WE COME!

We have also had family and individual donations, which I can not thank you ALL enough!!  We are both fortunate to have such loving families and individuals around us!!!  

Perhaps the biggest expense is therapies.  I mentioned in the last post that the Anat Baniel Method (ABM) lessons we have been taking.  We are learning now more than ever about how the brain functions.  It was thought, up until the 90's, that the brain does not regenerate cells.  Neuroscience now understands that the brain DOES continue to renew itself!  Where Anat's system comes in is it uses small intentional movements to create new pathways in the brain!!  (Convoluted?  If you want to know more it is linked above.)  

Anywho, we have a wonderful ABM practitioner here, Katherine :) Millie thoroughly enjoys these lessons.  Katherine is very knowledgeable in ABM and works with several children in town and surrounding states (as well as around the world in her travels), however it is recommended for maximum benefit to travel to see Anat herself.  On the ABM Caregiver facebook page you can see that people travel from all over the WORLD to have their special/medical needs children work with Anat.  It would be sorta like going to Hank Haney for golf lessons; Bill Gates for computer help; Warren Buffet for financial advice; Yo Yo Ma for music lessons....you see where I'm going with this?  Only problem is it's in CA.  They book early and they book quick!  Now, we have not decided on this yet.  We would LOVE to, but its a big commitment and comes with a lot of planning and expenses!  We are lucky to have an ABM instructor that will be visiting Katherine in March so we are hoping to book a whole slew of lessons then!  

We would like to get her back to the chiropractor.  Dr. W, her chiropractor, was so wonderful and really helpful.  If she is still refluxing (which is what our pulmonologist suspects and is causing her inflammation), chiropractic care is wonderful for infant reflux!  Another big one is acupuncture.  There is a lot of research sighting acupuncture to help in cases of infantile spasms/epilepsy.  We will also be reaching out to a homeopathic Dr in town that has had amazing results for seizures.  But these options are not instant and need to be built up and maintained to a certain extent.

Then, there are always the "what if's".  There is a whole department at Boston  University Children's Hospital that focus specifically on microcephaly.  What If Cinci just can't help us the way Boston can?  Do we go to Boston?  How?   ....But I'm getting WAY ahead of myself.  I know she will get better, whether we find answers or she does it on her own.

I hope that helps explain about WHY we are fundraising.  As her mom, I don't care if it ALL comes out of my pockets.  I will do everything I know, find and can to help Millie learn to hear, sit up, eat normally, reach for toys; not to mention learn to walk, run, skip, tie her shoes, brush her hair...little things that up until now I had no real appreciation for but are all miracles in their own rights.

You can go HERE to help.  And thanks, sincerely!!

XOXO Millie and Mom
  

The FULL story...grab a coffee, its a doozy!

As you can see, life with Millie started out pretty normal :) 

Actually, the doctors at the hospital had us worried SICK, we knew shortly after birth she had a poor swallow.  The doctors came into the room, when I was exhausted and ALONE, to tell me something wasn't quite right.  They said her head was small for her size (which still is invisible to the naked eye).  They were throwing out jargon like "microcephly", "micrognathia", "wide nose", "high arched pallet"...they were concerned her toes are stacked and her pinkies curved in (both genetic traits of our boys also).  We figured they were crazy, she was (and is) the spitting image of her big bro Sam.  

Let me give you the back story. Hospitals are new to us.  See, we had both of our older boys (Neal 9 and Sam 6) at home.  I can't say enough about how MUCH I enjoyed those experiences :)  We looked for a home birth midwife here, as we had moved since the last births.  They were ALL booked!  We settled on Vanderbilt Midwives, had heard good things though not looking forward to a hospital birth.  The last 2 were easy, quick and uneventful so I assumed we would go in, give birth and be out in 24 hours.  The midwives themselves were more than happy to accommodate anything we wanted as far as the birth plan went.  So that fills you in on our "new" surrounding.

Anyway, we stayed a few days to help her feed.  I was pumping and they wanted to make sure she was taking in X amount per feeding every X hours.  Reasonable enough to me since she didn't seem to latch on.  We saw a lactation consultant a few times there and she was really helpful.  I saw a different one as well once I got home, we tried a nipple shield, which seemed to help.  

Right after the last picture above was when we went to the hospital for the first time, Failure To Thrive. She had lost nearly a pound.  They kept us for a few days, monitoring what I was pumping and what she was taking in and seemed content with the circumstance being I wasn't producing enough milk.  (Now, I breast fed both boys, though I am NOT a good pumper, I tried EVERYTHING...cookies, oatmeal, herbs, oils, baths....believe me, everything!)  On the last day she threw up profusely everything she had just eaten, projectile!  I was concerned but the nurses wrote it off as reflux and we were discharged anyway.  Once we got home that evening she threw up again, 3 different times, several hours after eating...back to the ER.

She had turned blue once at home as well (red flag right?)so I informed the ER Nurses and they put a monitor on her.  A few uneventful hours and then as she was refluxing again the monitor picked up a DSAT, or that she was not breathing and her oxygen level dropped, into the 70s.  Her abnormal breathing had been mentioned before (you will see my frustration throughout this post, there were and continue to be several things mentioned to medical staff that are ignored until it creates problems...this slows down diagnosis as well as treatments and then creates "emergency" situations).  This admission was the "beginning", we went to PICU.  I don't really remember much about this particular time because we were out of our minds with fear and grief.  I didn't, at the time, fully understand (in medical terms, I've learned a TON since then) what was happening so I can't really recollect properly. 

Several things happened in April; her suck/swallow study showed she was aspirating what she took in by mouth, she was put on oxygen, they noticed apnea events, she was given a tube to eat (N-J, it bypasses the stomach and feeds directly into the jejunum), she was given a monitor to watch heart rate and oxygen levels and had low muscle tone.  Her heart rate was a concern because she was getting into the 220-230s when she would reflux.  (Just to give perspective, a normal infant heart rate is in the 120-140 range.)

Something else EARTH-shattering happened in April, my dad had a major stroke.  I will never forget sitting in Millie's hospital room wondering why my sister (Hi Sarah!) was acting so funny that day....they didn't want to tell me, figured I had enough on my plate.  He hadn't been feeling well, in fact just 3 days before he drove the boys to Jackson, TN to meet Penn; they had been in Memphis for the weekend while we were with Mill in the hospital.  He came into work on that Wednesday and hadn't been feeling well.  His long-time friend, Eloise, came into his office to check on him and said he wasn't really making sense, she was going to take him to the hospital.  Only he couldn't stand up.  They called an ambulance...I'm not privy to the memory of what happened in Memphis that day, Sarah was with him (I can NOT say enough about how strong my little sister was through it ALL!!!!  Words can't explain! ) but I know it included a helicopter ride!  Apparently there was a staph infection in his blood caused by an old injury.  It created a growth on his heart which dislodged and made its way to the brain.  I WILL say his recovery has been an ABSOLUTE MIRACLE!  After PT and open heart surgery his attitude is stellar and his faith is strong!!  We found out later just how grave the condition was....I thank God everyday that for as bad as it appeared, we are where we are today.

Back to Vandy Children's Hospital- After talking with the Drs, we decided on a few procedures, a Nissen surgery, where the top of the stomach is wrapped around the bottom of the esophagus to create a seal so nothing could come back up.  She was diagnosed (along the way) with tracheomalacia, which was causing labored breathing and using more calories that she could take in.  The chronic reflux was creating inflammation which worsened her condition.  (it was ALL very cyclical!)  She was still throwing up and DSATed some at home so we called her pulmonary specialist and they said come on back in.  We were admitted and waited (not so patiently) for her surgery date.

So May 11th, surgery day- everything went GREAT, we were discharged a week later and sent home as hopeful, happy parents ready to resume a "normal" life....we were still on the monitor and oxygen as needed (spot checks a lot!).  

Two weeks later I was getting ready for work one morning when I noticed her doing some funny twitching.  In our past hospitalizations they were concerned about seizures.  She did this movement, we called it the zombie dance, where her arms would go out straight and she would shake her head, it was only when she refluxed, we figured it her way of trying to stop it.  They had done an EEG and MRI and everything looked fine....  A few days later she was still twitching so we called her specialists and they wanted us to come into ER to be admitted for EEG and monitoring.   

She was hooked up on the EEG for 3 days!  It was horrible...we couldn't hold her and as the monitoring went on, it seemed to worsen.  It was concluded that what we were experiencing were Infantile Spasms.  (You can google it, fair warning: everything on the great internet is NEGATIVE.)  Through talking it all out with different people we encountered some acquaintances who had experiences with infantile spasms.  Their input and feedback is what has given us hope through it all.  We know it is a form of Epilepsy, something she will deal with her whole life.  We did a repeat MRI and discovered heterotopia, or grey matter in the brain that prevents the nerves from passing along information.  Now, a perfectly "normal" person can have this their entire LIFE and not know it until something happens when an MRI is needed and it is discovered.  It basically is just a reason for her epilepsy.   

We took her home and loved on her :) She was put on the Ketogenic diet (it is really interesting, I encourage you to google it.) for seizure management as well as a few meds.  They have since changed, she is now on Topamax, Keppra and Sabril (or vigabatrin).  

We were in the hospital the whole month of August with Pneumonia (second PICU stay) and complications with pneumonia.  This was where I had to make the decision to leave work.  I have always loved what I do and the people I work with.  I have made life-long friends, it is exciting and changing and gratifying.  But I came to a crossroad where I was letting my guilt about not being in the office consume me and wanting to be at the hospital with Millie....time to choose....the winner was obvious!!  Millie was VERY happy with this decision, she has loved having me home :)

We were told along the way by a very respected Dr at VCH that Millie is essentially "a puzzle".  We took that to our pediatrician at the time and decided for a second opinion.  Its divine intervention how Cincinnati came into the picture.  We ran across SEVERAL people, friends and strangers, who recommended it...it was reputable (3rd best pediatric hospital in the nation) and close.  Our pediatrician was happy to refer us for a second opinion.

After all of the correspondence with Cincinnati Children's Hospital (CCH) we were referred to the Aerodigestive and Sleep Clinic which covers ENT, GI and Pulmonary- ALL of her issues!  AND they are the TOP in the nation for this specific area!  We were hoping to get in by early October....and were put off until January!!  Talk about heartbreak!  We were so ready to figure out what was going on with our baby!!  They wanted us to see their Neurology and Genetics Dept first, have them look her over so when Aero did their thing they would have input.  

It was then, in October, that we were told she was diagnosed with Microcephly, or "small head".  (Warning again, you can google it but lots of bad stuff and pics come up so use discretion!)  They threw out lots of stuff at us, some ok, some bad...take what works and leave the rest is my motto!  They wanted to do further genetic testing (they did some at Vanderbilt but everything came back fine)...still waiting for that to be approved.  This condition also attributes to her slow growth, she is nearly a normal length but only 12 lbs, and at 10 months is currently wearing about 9 month clothes.  

She was a ghost for Halloween!  BOO!

Millie and her Sissy, she just loves her...can you tell?!?

Present Day-  We were "hospital free" through the end of 2012!!  On the 3rd of Jan we went into ER for issues (actually transported by ambulance from our peds office!)  Did some breathing treatments for congestion, checked for pneumonia, and sent home.  Tuesday morning the 15th, very early, she had some intense seizures and spiked a fever.  I watched her through the morning.  She continued to seize, fever was coming down a bit but her heart rate was high and breathing had become more labored....back to the ER.  This was an interesting trip, they sent us to trauma after one look at her (though she was breathing the same as when we were there on the 3rd) and after a few minutes told me they wanted to intubate her...where they stick a tube into her lungs and let the ventilator breath for her.  I was not cool with this, let me tell you why.  Upon entering the trauma room, with 7 nurses and 2 Dr working on her, she continually worsened.  Children are sensitive enough, and imagine having all these people yelling, throwing you around, poking and prodding you while having NO IDEA what is going on....yeah.  I wanted to make sure that the decision was based on what I explained was happening as opposed to after she started getting worked up.  However, I was concerned about her heart rate, which was now in the 230s, so I consented, knowing that the highest good will prevail.  They excused me to the "family room" while they did the procedure.  It was right across the hall so I listened, watched the feet and faces of those entering and leaving, and PRAYED.  Finally Penn arrived and the Dr came in, our baby girl did GREAT :)  We went to her and waited for a PICU room.  

They did some blood work, chest xray and different virus scans.  Once in PICU they turned down the vent and she began breathing on her own.  (The Dr that evening ended up asking why they intubated her, he said based on what he saw he would not have but we both understood that in the ER the circumstances are different and they need to make "life or death" decisions....it was okay with me, like I said I knew the highest good would prevail.)  They extubated her and treated her for RSV.  She also came back positive for staph (not the bad kind) and pneumococcus.  

Lots of breathing treatments to break up the lung gunk and suctioning...treatment and suction...treatment and suction...it helped a ton!!  We decided to go to the general floor one night for observation and then go home!  They did a repeat blood test on Saturday and sent us home.  HOWEVER, we lost our appointments at CCH, remember those?  We waited for MONTHS for them.  They were a few different procedures to give the team a look at what is going on with her; chest MRI, bronch scope, a swallowing test...with her being sick it wouldn't have given them a clear picture of what is going on "normally".  (We were VERY upset to loose these, they will now be rescheduled for April/May.  I know that there is a reason for it, so that helped me to not be too upset.)

It wasn't until our follow up appointment with her peditrician on Wednesday that we discovered something else, her platelet count was REALLY high!  Like over 1Mil.  (A normal range is 50,000-350,000.)  We ran a repeat test and she was down in the 900K range.  I was told Saturday in the hospital she always ran a little high (numbers in the 600K-800K range).  Once we went to CCH in Oct they actually asked us to repeat the test, we did a heel stick and it clotted, tried again and it clotted.  Obviously this is the first time I am hearing of this or I would have been ALL over it!  The most concerning issue is that high platelet counts can contribute to...wait for it..HEART issues!! And here she is with this quizzically high heart rate and full knowledge of high platelets and no one offers a follow up.  Its like pumping sludge through her veins, causing all sorts of unnecessary stress.....you see our frustration?

That brings us to TODAY :)  At this exact moment we are waiting to hear from hemotology on an appointment for more testing, to discover if its reactive or active.  Reactive is high count due to infection and active stems from overactive bone marrow.  

Another thing I didn't mention yet, she is Deaf.  She is approved for cochlear implants but we are working on getting good head control.  If she can't hold her head up (doing well on the shoulder but working on tummy time) then the device is moot since she would be laying on her ear half the time.  We are working on her medical needs and at the moment seizures and muscle tone take precedent. Which brings me to her therapies.

We have some wonderful therapies for her.  TEIS, a gov agency, offers a resource teacher and she comes once a week, we LOVE her!!  We do baby massage and work on textiles and all sorts of fun things :)  We also have PT that comes once a week, her name is Karen and she owns Health Sphere Wellness, we LOVE her!  We share similar theologies on natural healing and prevention vs intervention.  Through my research (imagine that LOL!) I came across the Anat Baniel Method (ABM for short, google it, REALLY interesting stuff, I could go on all day about it!) which is categorized a neuromuscular re-education, though it is NOT covered by insurance and is quite pricey.   All of these put together have been MIRACLE workers!!  (I told you, we believe in miracles in this family!!)  We used a chiropractor at one point but switched insurances and lost it, want to pick it back up and are just waiting on funds.  We are about to start being followed by a homeopathic Dr and I know we will get some great ideas there.  I use oil therapy on her- Frankincense for seizures (we saw a great progress) and different oils for whats going on, oregano for infections, different ones for muscle control and alertness.  She has started crying some!!  Every time we hear it we smile, imagine that...smiling when your baby cries!!  She still has several severe global delays.

So there it is, the last 10 months in a few (more than a few) paragraphs and pictures.  We are so blessed!! We are blessed to have such caring and loving boys!! They love their little sister with a bond that I never thought was imaginable!!  They are nurturing, love to play and read to her and always want to hug, kiss and hold her!!  I have grown as a person more through this whole process than I EVER imagined; and anyone who knows me KNOWS I've been tried and tested through my life.  My faith in God and Miracles is unwavering (um, well not always LOL!  There are bad days too.), I know Millie is here to teach and I know she will, in her own time, heal and become a typical sassy, sweet and precocious kid :) 

HERE is a link to her donation site.  ALL of the donations go towards her therapies that are not covered by insurance and travel expenses to CCH (we will be going next week for different follow ups and again in February).  We just want to give our little girl the BEST quality of life possible!!

Well thanks for stopping by, reading and learning more about Millie; I invite you to follow up on our Journey of Healing.  There may be times when my words might help in your life, though there will probably be more times yours will help in mine :) so leave a comment!!

XOXO Millie and Mom