Battling unwelcome demons

No – that does not refer to Ellie.  Our sweet girl is doing rather well these days.  Praise God!  She is eating like a champ right now, too.  In fact, we’ve been given the green light to take away two of her five daily tube feeds because she’s doing so well eating by mouth that we’ve replaced those calories.  I’m in no hurry to pull her G tube.  That baby is just waaaayyyy too nice to have when Ellie is sick.  If we want to push Pedialyte while she sleeps to keep her hydrated, we can.  If we want to slow down the rate of her feeds because she’s not tolerating them, we can.  If we just need to get food in her when she’s barely awake all day… or need to push nasty tasting meds, it’s not a problem.  Sooo… the tubie is my friend and while I’m thrilled that Ellie has a healthy appetite and she’s taking lots of foods by mouth, I’m in no rush to get rid of her tube. 

She’s progressing well in physical and occupational therapy.  She’s kind of a rock star all around.  Her swallow study that she had earlier this month went beautifully… no concerns at all.  She also had a sleep study… we’ll get results next week.  The sleep study will determine if she’s ready to be off of the ventilator at night.  This would be a huge step for us.  If she’s ready for that, we can start to work on capping her trach during the day (which would mean she’d be moving all of her air in AND out of her mouth).  Her speaking valve allows her to breathe in her trach, but out of her mouth.  Capping it would be a whole new battle… but hopefully a smooth transition for Ellie.  Once we’re to that point, we can look at a capped sleep study… and if that’s great… surgery and decannulation (removal of her trach).  Please know that this is assuming the best possible scenario over those four big transitions… and those transitions each take quite a while.  But it’s progress in the right direction, at least.  We know that Ellie will need a pretty big surgery on her trachea before decannulation is even a far off thought.  The earliest they’ll think about doing surgery (assuming all aforementioned steps are successful) is next summer.  They really only do the surgery in the summer because of the risk of infection during the school year.  So… if Ellie is going to be trach free by her 2^nd birthday, we have to keep pressing forward on all of these steps and we need to stay on top of progress.  One step at a time… one step at a time.  But that’s the overall goal, just so you know.

 Our happy girl just before her 2nd sedated procedure in September.

Can you feel her joy?

She’s been semi-healthy lately… healthy in Ellie’s standards, at least.  Her 1^st outpatient procedure just after her birthday landed her in the PICU again.  There was a tear in the lining of her trachea, making the risk of infection high.  She shocked her ENT when she was doing so well the next day.  He told us to go ahead and go home (we were supposed to stay for a week), but to keep her isolated for the week.  We have all of the equipment (and staff) on hand at home to handle quite a bit, which is a huge relief.  It’s much safer for her to be home and just exposed to the germs that are in our home than to be in a hospital full of sick people.  We’ve also dealt with a few bouts of c diff lately (with Ellie).  C diff is scary stuff.  Because she has to be on antibiotics so often, the good bacteria gets wiped out and nasty stuff like c diff has the opportunity to take over.  No good.  We keep her isolated in the house when this happens, too.  So we’ve been hermits here and there for the last few weeks, but we’re doing our best to keep her healthy and keep her safe from others’ germs while also keeping her icky germs away from public places when she’s sick.  Always an adventure, right?

She’s had her birthday celebration, a trip down to the Ronald McDonald House, countless appointments and tests, two procedures, big accomplishments in PT and OT, HUGE progress in oral intake, and more smiles than we could possibly account for in these past weeks.  I’ve been slow to update… for that, I’m sorry.

That brings me to the next portion… and it is hard for me to write these words.  It’s been incredibly difficult for me to blog lately because I’m battling some serious demons in my head.  I’m not kidding.  I’m dealing with a lot of displaced anger… the simplest things are cutting me deep these days.  Between anger and isolation, I don’t always know how to feel or what to say.  I feel like an island most days.  Blah.

We’ve spent the last year living moment to moment.  We had to be present at all times.  We had to be alert and had to stay on top of everything.  We… changing this to “I” because I don’t want to throw Brandon under the bus here… I had to take it all in.  Everything.  Ellie went through a lot in the last year and every day, I was living in the moment and taking in what was being thrown at me that day… processing it mentally and moving forward.  A year ago, Ellie started storming for the first time.  I didn’t know what was going on, but I was diligent.  I took notes, I wrote down details of symptoms and did research.  I was frustrated for six weeks before we had an answer to something that was so scary (I know many people wait a lifetime for answers… and I can’t imagine, because six weeks was exhausting).  I sat in rooms full of beeps and montiors for months – I lost more nights of sleep than I got.  I prayed feverishly, I heard a world class surgeon tell me that my daughter would likely die in the operating room a few days before her first heart surgery.  I endured and endured and endured.  Was it all worth it?  You bet!  Did we end up with a huge miracle at the end?  Absolutely.  Am I grateful each and every day that the light in the Ronald McDonald House was never lit in memory of my sweet girl?  I praise God every day for that.  But did I deal with the stress and pressure of it all as it was happening?  Not at all. 

Over the past two months, my mind and body have finally started to cope with what we’ve been through with Ellie.  I praise God that Ellie is too young to ever remember what has happened to her.  But me… my scars are becoming more visible each and every day.  This kind of trauma takes its toll.  I’m realizing now how much of a toll it’s taking.  Some days I’m battling mild depression… some days I just want to quit at parenting or marriage… my head and body ache from extreme amounts of tension surging through the muscles in my neck and shoulders (ask my chiropractor and neurologist… I’m a mess).  Some days I sit like a vacant shell of who I used to be because there’s a lot of anger and loneliness involved in this journey.  There are many days where I feel like the only people who truly understand what this feels like are so far away (those that we met in the Ronald McDonald House).  And there are many days when I don’t feel like I can unload this burden on them because a handful of those moms are dealing with life without their child… and that’s more than I could ever imagine. 

I guess I’m unloading this now because it’s time for healing.  It’s time to recognize that I’m angry that some people can pick up and go on a whim.  I’m jealous that some people can call a neighbor, family member, friend, etc. to watch their kids for them while they go do something.  No one can watch Ellie… no one… well, except her nurses.  I am even angry when I see other kids doing so much more than Ellie is.  Don’t get me wrong, I’m not angry AT other people… I’m angry that we aren’t those people anymore.  I feel alone in that very few people understand this struggle… or maybe I’m not listening hard enough to those around me who DO understand. 

And on top of this, I’m angry at myself for being angry… I’m angry at myself for not always feeling blessed.  I know in my heart that we’re incredibly blessed.  I know that Ellie’s situation is as good as it could possibly be.  I know that she’s a survivor in a world that’s so dark and scary.  So many babies have gone before her to their forever homes in heaven.  Why can’t I be overjoyed?  I’m not sure.  I AM happy, I AM thankful… but part of me is very broken right now… part of me is very lonely and sad.  Part of me wants to run away and hide.  If you’ve seen me in the past few months and thought I’ve seemed vacant, I have.  If you see me in the next few weeks and think I’m acting weird… I probably am.  I’m a busted up mess physically, emotional, spiritually.  I’m working on it… but please, be patient with me.  Know that I love you all dearly and that I’m trying to cope.  I’m trying to find my way again… find that giddy hope and carefree happiness that I used to have.  It’s gone right now, though… and I’m kind of fragile.  If you see my husband, thank him for being incredibly strong for me.  He gets the brunt of my moodiness, anger and doubt.  This road has turns and dips that I couldn’t have imagined before.  This road has darkness even when things are going so well.  This is not somewhere I ever thought I would be… but I’m here.  I’m sharing this to raise awareness of the baggage that comes with trauma.  I know other people feel this… which is sort of comforting, but painful, too.  I know others who have been in a similar pit and are doing better… so there’s hope in that.  There is just so much that has happened that I wasn’t able to process in the moment.  I’m thankful today that we have a time of calm… even if that means that it’s a time when the demons can surface.  Pray for us as we battle these demons, please.  I know there is light at the end of this tunnel.  I know it.

Okay – thank you for letting me unload that heavy darkness.  I do have some light and happy photos of our happenings to share if I haven’t bummed you out too much to enjoy:

Every tubie should have a cupcake pad for their birthday, right?

Serving brunch at the RMH.  Thank you to all of Team Ellie Bug for supporting us.  We brought down nearly 50 gifts for the other children, plus financial donations and a few gallons of pop tabs... thanks to YOU.  You're the best!! 

Little victories:  she can finally sit up in a shopping cart.  Yahoo!  No more infant seat for us.

BIG victory:  drinking from a straw.  This took 4 months of work, y'all... she's amazing.

Selfies before her 1st outpatient procedure in September... didn't go as planned and we were admitted.  Dang it.  She's such a stinker.

When we were allowed to come home early from the PICU, we had to hunker down for a week until her follow-up procedure.  We could take her out of the house... but couldn't go to stores or church or anywhere else where she'd be exposed to many people.  We had a family movie night, played at the park, took school pictures of the kids... hermit stuff.

A very special balloon release for a very special little boy's 11th birthday.  

We love you and miss you every day, Jared.

Ellie's ENT, Dr. Elluru, giving her a pep talk before her 2nd procedure.  He said she was too cute to ride in the crib to the OR, she was carried.  We love this team!

Ellie's 1st Buddy Walk.  How awesome!  

She was given a plaque for being the youngest buddy in attendance.

 Playing with toys waiting for her GI appointment.  This girl had 6 appointments and 1 day-long procedure this week.  Talk about exhausting!

All wrapped up for her sleep study.  We had to send this pic to her buddy Tillery.  

Tillery rocks head wraps in the most adorable way.

Guess she found something interesting between her toes

A superhero bash at Steinke Family Chiropractic.

Ellie giving Aunt Nicki some snuggles at Fall Fest

 Ummm... isn't she the cutest Raggedy Ann in the world?

 

The whole fam at our 1st Halloween party of the season.  We have: Carmen San Diego & Waldo, a Ghostbuster, Inspector Gadget, and sweet lil Raggedy Ann

Sitting pretty Sunday :)

Since the last blog post was soooo long... I'll keep this one short.  We'll have a birthday post by the end of the week, anyhow.

I just wanted to throw out an update that we're super excited about:  Ellie's sitting up all by herself.  This was our 1st birthday goal for her... and she met it six days early.  I'm such a proud momma.  She doesn't do it voluntarily, per se, but if we distract her with a toy and she doesn't know that we've moved away from her, she can sit for more than five minutes on her own.  This is a BIG deal!  Here is a picture of the 1st time she sat up for us - on Friday.  She's been repeating this feat all weekend.  I would have posted a face picture, but she was rocking back and forth so much and moving around that those pictures aren't focused.

Sitting up, playing with her toy.  She doesn't know that Rae is out of reach.

And a funny for you:  We have a private duty nurse named David.  David is from Nigeria and has very dark skin.  Today, Kaleb was playing with him and said, "David, what's your favorite color of faces?"  I tried to play it off, embarrassed, saying, "I think he wants to know your favorite color."  Kaleb said, "No, face color... like, white, green, or yours" pointing to David's face.  Part of me was mortified... but I had to step back and see that this was my own PC thinking gone awry.  Kaleb wasn't saying that any one color was any different from another, he was just asking David what his favorite was, as simple as having him pick his favorite crayon or shirt color.  To him, skin color wasn't any different.  Man... I sure have a lot to learn from these innocent little people.  If only adults saw the world like they do, I wouldn't be so worried about acceptance for Ellie in the future.  Geesh!

August in the DYT

So this month is almost over… and I think this is the fastest month I’ve ever lived.  Geesh, where are my days going?  We started this month off with a wedding for friends and a beautiful weekend.  Towards the start of the first week, Ellie was pretty under the weather.  She was coming down with something, for sure.  On Monday, the 3^rd, she wasn’t really tolerating her speaking valve for very long.  On Tuesday, she wasn’t tolerating it at all and seemed exhausted all of the time.  On Wednesday, her heart rate and breathing rate were quite elevated.  Our normal pediatrician said that we needed to go to Children’s and see one of our specialists there.  Since we were in the process of moving pulmonology from Cincinnati to Dayton, we hadn’t established care yet, so we called cardiology to see her.  Dr. Luby said that Ellie looks perfect from a cardiac standpoint (hallelujah), but wanted us in the pulmonology (pulm) clinic immediately.  By the time we were home from clinic, Ellie was working so hard to breathe that we put her right on the ventilator… instead of waiting for bedtime.  We took an 8:30am appointment on Thursday.  

By Tuesday morning, Ellie was struggling for each breath, even on the ventilator.  We weren’t in the pulm clinic for more than a few minutes before the pulmonologist said, “you’re not going home with her”.  So, Ellie was admitted to the PICU in Dayton and they started some “big gun” antibiotics.  She was on IV vancomycin right away, which she had a Red Man’s Syndrome reaction to.  Slowing down the infusion rate made that better.  When cultures came back, we found that Ellie was growing three different bugs in her trach secretions (psuedomonas, h flu, and serratia).  Gross.  She was put on a 2^nd IV antibiotic (zosyn).  We spent six days in the PICU recovering from these monsters in her trachea before she could go home.  Poor buggles.  While we were admitted, we were referred to a new supply company that would cover all trach/vent/g tube supplies in one stop.  This might not sound like a big deal to you… but let me tell you, in the world of medical supplies… a 1-stop-shop is unheard of.  It’s actually cause for celebration.  So I got the ball rolling to transition our care to this new (to us) company.  I also tried to get Ellie’s prescriptions at discharge from the hospital pharmacy… only to find out our insurance denied the prescription because Ellie doesn’t have cystic fibrosis.  This was one of those times when I wanted to scream into the phone.  I know this medicine is expensive (like, $8,000 a month), but our pulmonologist told us that this (inhaled aerosol) med would be key to keeping these same bacteria from growing in her trach again (she’d had the same major one grow before in Cincinnati).  If we can keep her healthy at home... we don't have to spend time in the PICU... spending time in the PICU costs much more than $8000.  I also found out that this new supply company that we were excited about, wasn’t an “in network” provider and we weren’t going to be able to use them.  Ugh.  I had to go all momma bear on the phone and via email to a few people before we got it all worked out.  Two days later, Ellie got the medicine that will keep pseudomonas at bay and I got the supply company that I desperately wanted to use.  Momma bear works… errrr… at least finds out the avenues that work to get what you need.

So we went home on August 11^th and started settling back into our home routine.  Kaleb was supposed to have his birthday party on the 8^th, but we had to move it back a weekend.  I bummed pretty hard about this.  We spent Thanksgiving and Christmas in the hospital… and Lance’s birthday… I was really hoping that after Boston, we could start spending celebratory days at home.  Poor Kaleb.  He didn’t mind.  I took him to a local splash park and let the boys play on the playground at the hospital.  That night, Mamaw and Papaw Maier came down and went to Chuck E Cheese’s with us, and he was allowed to open his gift from us (a remote control car) and drive it around Ellie’s PICU room.  So it worked out alright for Kaleb.  We held his birthday party on August 14^th and he loved his Pancakes & Pajamas theme.

Red Man's Syndrome - reaction to vancomycin... it's not too visible here

Rae came to play

 Ellie's 1st selfie.  

I was letting her watch herself eat... and she leaned forward to took this picture.

Pretty smiles

The boys at the hospital playground

Motorcycle with Daddy and Chuck E. Cheese's

Gaming

Pizza

We’ve been working with the boys, trying to get them ready for school – continually amazed by how quickly kids learn things.  Kaleb is working on colors right now, he knows his alphabet… but can’t always pick out the letters (he JUST turned 3, so I think we’re just fine there).  He’s talking more and more now… and he has the most adorable little speech impediments.  I’m sure he’ll grow out of these, and fortunately, they’re going to a school with plenty of speech therapists on hand if they think he needs help.  He replaces Rs with Ws and Cs with Ts.  He calls Lance, “Yance” and says, “I Yove You, Mommy”.  Oh, it melts me.  Sometimes, he’s a little hard to understand… but again, he’s three.  Earlier this summer, we were headed back from a festival and walking back to my in-laws’ house when Kaleb said, “Mom, a walk in my shoe.”  I said, “Yep, you’re walking in your shoes… big guy, Kaleb.”  Later, he said, “Walk in my shoe”.  Again… same response from me… he seemed happy enough, I thought he was proud to be walking along the road like a big kid with me.  After a few more blocks, he bent down and cried, “Mom, there’s a wock in my shoe”.  Awww, man, a ROCK in his shoe.  Mommy fails.  I picked that pebble out and carried him for a while, feeling pretty rotten that I’d just encouraged him to keep walking on a rock this whole time.  Good grief, he’s cute.

And Lance… oh, Lance.  He has energy for days.  He functions well on a schedule, but whew, if you give that kid wiggle room and throw him off of that schedule, you’re in for it.  He has plenty of sass to go with that energy and it can be exhausting.  But he’s a smart little guy.  Seriously smart.  Last weekend he said, “Mom, do you know what incognito means?”.  “Uhhh… yeah, do you?”  “Yep, it means ‘in costume’, right?”  “Sure does, Lance… sure does.”  I think he might be the only kid in his class that uses words like gargantuan and incognito… but hey… whatevs.  He’s starting to read.  This blows my mind.  I didn’t teach him… I kind of feel bad about that, but it’s the truth.  In fact, the thought of teaching a kid how to read just seems insurmountable to me… but he’s doing it.  Honestly, I credit the learning apps I let him play with.  Those are also where he learns these big words.  He doesn’t read big words, but as we drive, he now asks things like, “Mommy, what does S-P-O-T spell?”  Then we sound it out and after a few seconds, he’ll say “S-P-O-T, spot”.  Or he says, “How do you spell iguana, Mom?”  And we sound it out… well, except that u after the g thing… that’s tricky.  He’s also learning to tell time, but the clock in our living room has roman numerals… cause we like to throw curve balls at our children as they try to learn, right?  But the boys are doing well.  They started school list week, which I’ll go into later in this chapter of a post.

We were back into the swing of things, getting super excited about this week… when the boys would start school… but on Sunday morning, Ellie broke out in a sudden rash right before church.  David, our nurse on Sunday, kept a close eye on her and we made sure we had all of our emergency equipment with us as we headed to church.  Ellie was still happy and alert, but the rash was totally unexplained.  When it didn’t subside by the time we were home from church, I started eliminating things.  We gave her another bath and got her a fresh change of clothes.  We changed out her blanket and I threw away the new formula bag and threw out the jar of formula I’d made for the whole day to make a new batch.  I had no idea what would be causing this rash, but it was all over her body and it was HOT!  She was pretty miserable all day, so we did our best to keep her comfortable.  It was still very present Sunday night when our overnight nurse came in.  I asked her to keep an eye on it and give her Tylenol if she seemed especially uncomfortable.  Thank GOD for nurses… really… I can never say that enough.

Danelle (our night nurse) knocked on my door super early Monday morning and said, “I’m going to call the on-call nurse to see what we need to do with Ellie.  Her color is changing and we need to call”.  I said, “alright”, but laid back in bed.  I hadn’t slept well at all and was trying to get a few more minutes of sleep.  Brandon was up and came back into our room and said, “You need to take Ellie to the ER.”  What??  I didn’t want to do that on Monday morning.  First, I had soooo much to catch up on with work… and it was “meet the teacher day” at preschool for the boys.  I went out to look at Ellie and talk to Danelle.  By this time, Ellie was starting to have minor seizures (is that an oxymoron?  Is there such a thing as a minor seizure?)  Her lips and hands and feet were gray.  Her capillary refill on her hands and feet was incredibly slow.  I called my mom in tears to ask her to come stay with my boys.  Brandon was headed to school and I was going to Dayton with our day shift nurse.  Oi!  

Mom showed up and Rae came in.  Rae and Danelle were buzzing around Ellie exchanging notes as they handed off the shift and checking Ellie over.  The rash was red and hot and her blood pressure was dangerously low.  Her arms and legs were ice cold.  This time, I packed a bag for Ellie and I and left the boys with mom.  We did not take Ellie off of the ventilator this morning (like we usually do), because… let’s be honest… we were already in the midst of an allergic reaction, let’s make sure we have a way to force air into her lungs if her airway closes off, right?

I cried several times that morning.  Not just because I was scared for Ellie… we’d been through so much with her that very few things rattle my bones anymore.  I cried because this was an exciting day for our boys.  Both of them had already sacrificed their birthdays when their sister was admitted and had not one complaint about it.  Today was an exciting day for them and I wouldn’t be there.  I cried because they would start school the next day… and I wanted to do all of that with them.  I knew my mom would be amazing and take them to meet their teachers… but that was something I was looking forward to.  I was having a pity party, for sure.  I hate those.

We didn’t even sit down in the waiting room of the ER, we were brought back to a room right away.  A thousand tests happened… I wanted to scream when they (again) didn’t believe me when I said that my daughter is an incredibly hard stick… and shed a few tears as they finally hit a vein on their third try - Ellie screaming in pain as I held her down on that bed.  Poor bug, bug.  By this time, Ellie had a fever and was really uncomfortable.  I asked for Benadryl to ease the pain of the rash.  Soon after, the doctor came in to say that Ellie’s blood counts were a little wonky, white blood cell (wbc) count was low and between that and the fever and the rash, they wanted to admit us to make sure there wasn’t something more going on.  She wasn't seizing in the ER... the seizures at home were febrile seizures... brought on by the fever.  It didn't make them any less scary.  We were admitted mid-afternoon.

This rash covered her body.

The first day was pretty standard… lots of test, few answers.  They said her reaction surely looked like a drug reaction, but was idiopathic (not a known cause).  But since Kaleb is super allergic to Bactrim, it was likely that this was a delayed reaction to that (Bactrim was the oral antibiotic she was placed on at discharge earlier this month… Sunday had been day 12 of a 14-day course).  The next morning, though... had me a ball of nerves.  In rounds, they talked about how Ellie’s blood counts still didn’t make sense.  Her wbc count dropped again, but her banded cells dropped, too… which could indicate a virus but was unlikely with an infection.  It COULD be related to the reaction she’d been having to the Bactrim.  The fevers she’d spiked COULD be related to the reaction to Bactrim as well.  But both of these things were possible, but unlikely.  They wanted to make sure that they covered all bases before they sent us home assuming that it was one thing and not another.  Have I ever told you how much I HATE antibiotics?  But with Ellie… she’s so susceptible to things that we follow orders.  Anyhow, in rounds, they said that those wbc counts had dropped along with the banded cells.  They said that her inflammatory markers were alarmingly high.  They needed to rule out endocarditis (gasp!) and they weren’t sure why her sodium levels were dropping, too.  They would wait for cultures to come back (blood, lukens, urine, stool).  In the meantime, they would check for strep (which was negative) and consult the infectious disease team.  If the infectious disease team couldn’t find solutions, they’d consult the hem/onc team.  

Hold up… this is where my heart hit my stomach.  Hem/onc?  For those of you not familiar with this jargon… this stands for hematology (blood disorders) and oncology (cancer).  Now, I’ve done my research… it’s always in the back of my mind… but oncology has never been thrown around in our world before.  I know that because Ellie has Down syndrome, her chances of getting leukemia are astronomically greater than my chances… I know this.  However, I told Brandon a long time ago that I’ve watched too many of our friends stand by their children through chemo and I never want to add an oncologist to the massive lists of specialists we need to see.  I am not as equipped as those moms are.  Was I putting the cart before the horse?  Yes.  Was I freaking out?  Yes.  But here’s how I deal, folks, and I think it’s served as a great system so far:  I take what we’re given (possible heart defect, possible chromosomal defect, possible neurological condition, the list goes on) and I prepare myself for that news.  I spend a few hours (maybe a day or so) preparing myself for the worst news on the spectrum in front of me.  I let my mind work through that and cry it out.  I let my inner most being pour out that feeling.  Then… any news less than what I’d imagine is cause for celebration.  Even if what I imagined is true (and so far, that’s kind of been the trend), I can process that news as it comes.  It’s weird, yes… but it’s worked for me so far. 

I had to leave the hospital soon after rounds.  I was handing off the stay to my mom so that I could get home and get my boys ready for their big day.  The drive home was my time to pour it out.  I blared me some Jesus music, let it speak to my soul, and cried an ugly cry as I squeezed and pounded on my steering wheel.  [I’m pretty sure those things are designed for abuse!]  Brandon called me and I could barely answer.  He was not impressed with my crying session.  But he knows… this is how I deal.  He told me, through his own tears, that I needed to pull it together before I got home because it was a good day, a happy day, for those little boys.  I knew this.  That’s why I had to get it all out then.  I continued my drive, probably scaring the living daylights out of fellow drivers with my meltdown, but felt much better by the time I was home.  I was able to scoop those boys up, take some cute pics, and drop them off at school.  I’m sure I looked like a hot mess at drop off, but it wasn’t about me.  Those little boys couldn’t have been more excited, and I wasn’t about to show them what a busted up mess their momma was. 

Later in the day, we found out that Ellie’s stool culture came back positive for C diff.  Gross.  And later that night, her white cell count rebounded some.  So we were hopeful that everything was back to good.  This morning, her white count had dropped again, so we ARE bringing in the hem/onc team today… the doc assured me that he wanted them to make sense of the bouncing counts and do a manual differential first.  So I'm swallowing that and holding on to the hope that we stop there.  We’re under contact precautions (which Brandon is all about with his new-found nursing knowledge… it’s kind of adorable… kind of annoying.  Ha!).  Ain’t nobody got time for C diff, c’mon now.  Her trach culture, urine culture, and blood culture are still clear right now… waiting it out on IV antibiotics right now.  And waiting to see what the other team comes up with.

Thanks for letting me virtually cry on your shoulder today.  Like I said, this blogging business is the best therapy around, y’all.  And as a reminder, we are still planning a trip down to the Ronald McDonald House of Cincinnati on Saturday, September 5^th to serve brunch in celebration of Ellie’s birthday.  It’s just around the corner.  If you were interested in donating toys or other gifts for those kids (or a financial gift to the house), please let me know soon.  We’ll be bringing those down with us on the 5^th.  I can’t wait to show you all the pictures of Ellie on her bday… and in her adorable little birthday outfit… eeek!  I’ll keep you posted if anything wonky happens here… but pray for no surprises, please.  Thank you for following along!  Here are more pics for ya:

This is her new therapy chair... she looks so big in it!

Kaleb's Pancake Friday party

Playground selfie... she's eating her carrier, yes.

Happy girl

Grandma and Aunt Corrine came for a visit

Tubie problems:  This is what happens when she plays with her gtube extension so much that it comes undone... then she swings it around like a lasso spewing formula everywhere!  Nice, Ellie... NICE.

And this is what a G tube looks like after you pull it out.  Ick.  That skinny part in the middle... yeah, that's what goes through her stoma.  That balloon on the end, yep... I pulled that through her tiny stoma.  Another mommy fail!

Bendy girl... yep, those little green socks are her feet... by her cheeks... and she's comfortable.

Best friends meet... finally!  Ellie got to meet Abby... celebrations!

Preparing for a superhero’s day…

As of yesterday, our sweet bug was eleven months old.  Eleven!  Part of me is super excited that we’re almost at that first birthday celebration… the other part of me is a little freaked out because I have a lot to do before then.  Ehhh… it’ll all go as it goes and Ellie will be her sweet, happy self through it all.

Ellie is thiiiissss close to sitting on her own right now.  She sits sometimes when she thinks you’re supporting behind her, but wobbles when she doesn’t feel you holding her.  She’s strong… so much stronger than she was just a few weeks ago.  That little core of hers is incredibly strong.  Most babies hold their torsos up in a leaned over sitting position… but not Ellie.  Her arms are weak (and adorably puffy).  She just lets those little arms do whatever they want to do (which means she leaves them floppy at her sides) while her core works in every direction to stabilize her body.  This is great, yes… but she now relies so much on her core that she’s not learning to push up with her arms.  She’s improvising… so we have to keep challenging her.  Our nurses and therapists are amazing.  While we do lots of therapy exercises with Ellie after work as we’re playing… she wouldn’t be making the strides she’s making without getting several additional sessions each morning and afternoon with the nurses.  These nurses are making this easy on us most days.  And now that we’re meeting with therapists each week, we’re constantly loading up our arsenal with new challenges and goals and toys towards progression.

Ellie is starting to wave and has clapped… twice.  But that takes a lot of coordination, so we don’t see it often.  We’re trying to get her to reach above her shoulders in a sitting position… something that is all but exhausting for Ellie.  We’re rigging up all kinds of little therapy stations in the house to always up the ante on her.  Poor Ellie… playing is so much work for her… but we know that if we ever stop challenging her, we’re failing as parents.  She might look like a baby and it’s comfortable to cradle hold her – but we’re trying our best to treat her like a toddler… make her sit, encourage her to kneel (which she hates with a passion), make her reach and pull and push and do all these other big-kid things to encourage development.  The struggle is real, y’all!  Ha.

And a big (HUGE) development in the world of our sweet Bug… a voice!  I know… this is such a big deal, right?  We were given a Passy Muir valve in Cincinnati when Ellie was only a few months old, but I wasn’t in the room when they went to use it.  They told me that she was not strong enough for it at all… and I kind of left it at that.  We went back to it again after my last post and we were allowed to go ahead and try it.  First, let me explain what this is:  normally, she has an HME on her trach.  And HME is a little barrel-shaped attachment that captures the moisture in her breath as she exhales and moistens the air that she inhales through the filters.  This is also called an artificial nose, for that very reason.  So with the nose (or HME), Ellie can breathe in and out on her own.  With the Passy Muir valve, Ellie can easily breathe in through her trach, but it’s impossible to breathe out through it.  This means that she must reroute the air that she needs to exhale up through her voice box and out of her mouth and nose.  It’s actually quite crazy to watch for the first time.  For so long, she’d not moved any air out of her nose or mouth, so she had to learn how to bring her air UP.  Weird, I know. 

We put this valve on her and let her try for just a few minutes, expecting her to freak out and hate it.  We were monitoring closely as we chartered this territory with her.  She coughed a bit, and let out this hoarse, raspy moan.  She kept making this throaty sound for a while; then, this pretty little voice emerged.  Once we got her to open her mouth wide, she discovered that she really could breathe out of her mouth with it.  I cried and wiped away happy tears as I squealed and clapped for her.  It was obvious that Ellie knew that she was indeed making this sound, and seemed quite impressed with herself.  For several minutes we sang, “La, la, la, la” at her and allowed her to respond.  Oh, what a wonderful day!  We drove around that evening to show of this new skill.  She cried with the valve on… and that sent me crying again.  I hadn’t heard my sweet girl cry since December (well, except for in an emergency situation where I was NOT focused on how sweet it was).  Ellie is now to the point where she will see me pull out the valve (we only use it when she’s nice and awake) and she’ll start getting excited.  What little girl doesn’t want to talk?  She has quite the story to tell, you know!  So that’s one more hurdle we’ve jumped in the past few weeks since I’ve updated.  What a wonderful thing it is to hear her voice… finally!  We chat daily now.

Getting piggy kisses from Grandpa (you can see her speaking valve here)

Now that we don’t have a barrage of medical equipment attached to her on our outings, strangers are starting to feel a little more open to make their weird comments again.  Ehhh… whatever!  I had a man at a restaurant ask, “Is she Down syndrome?”  This didn’t bother me, really… because he was well-meaning and sweet with the story he told, but I did say, “she has Down syndrome, yes.”  This is just always going to be a pet peeve of mine.  My grandpa had cancer… no one ever asked if he was cancer.  [Don’t for a moment think I’m relating the struggles of Down syndrome to those of cancer… that’s in no way what I’m doing… I’m just telling you all how ridiculous it sounds to define someone by a condition they have.]  And then there was the crotchety lady at the store who rudely said, “what’s wrong with her?”  I said, “Excuse me?”  She said, “What’s wrong with that baby?”  I mean… in all fairness, this was just her way of inserting a rude segue into telling me about how fruitless and disappointing her life choices were.  One of those people who follows you around unloading their baggage, you know?  I guess she was just waiting to inflict that on the next person in search of thumbtacks that day… lucky me!  I just wish I didn’t have all three kids with me.  The boys don’t know that anything is wrong with Ellie… just that Ellie is Ellie… and that’s that.  I’m sure they were just as taken aback when a stranger asked what was wrong with their sister.  I’ll encourage them to kick future offenders in the shins!  Take that.

Enough about grumpy people… we’re getting dangerously close to this birthday celebration and I couldn’t be more excited.  I totally get into this 1^st birthday thing… Lance had a monster theme… Kaleb a farm theme.  Ellie… we’re giving her a superhero theme for her big day.  After all, she is my biggest hero and she is definitely packing superpowers in under those little chunky rolls of hers.  We’ll have a party… see if she can eat cake and celebrate the heck out of that day!  The original invites I picked out said, “A year of laughter, a year of fun… our little Ellie is turning ONE”  But that didn’t seem to describe our first year.  Half of her first year was spent in hospitals.  Half of her nights sleeping in the cage with monitors and wires and tubes.  So laughter and fun didn’t capture the whole picture well at all… but as we thought about it, nothing really captured the year she’s had.  She’s walked a tremendous valley, yes… but she’s also been given so much more than we could have imagined possible.  She’s been given love and support from family, friends, and strangers.  She’s been given hope and promise and literally, a new life.  She’s been given a brand new heart, for Pete’s sake… what more could we want for this kid?  So as we thought more about Ellie’s birthday, we realized how big of a celebration this was.  It’s truly a miracle that she’s able to celebrate a birthday at all.  She’s been given the gift of life this year… a complicated one, maybe… but life.  She’s been richly showered with love and support; she’s been treated with medical advances that were crafted by God himself.  She has a team of medical professionals and therapists that cheer her on at every turn and the army that is Team Ellie Bug that always has her back.  She really is the little girl who has it all this year.  Instead of doing things for Ellie on her birthday, we’re going to do our best to give back… at least a little.  If you feel lead to celebrate with us in this way, we’re going to collect unwrapped gifts and monetary donations to bring down to the Ronald McDonald House the weekend after her birthday (Sept. 5^th).  We’re going to celebrate with her by serving a meal there and bringing gifts for other kids who might be spending their birthdays in treatment.  If this is something you’re interested in helping with, please contact me (Jacquelyn.schroer@gmail.com).  I would love to shower others with the love and support of Team Ellie Bug in September.

Well, friends… that’s all the updates I have for now.  Our tough little bug is growing and learning every day… right now she’s slumped over sleeping in her boppy after some pre-bed therapy.  She’s officially the most blessed person I know with the sweetest little voice… and she’s about to have a big fat birthday celebration.  We have so many people to thank for making this first year possible… and so many people to encourage with her life and story.  We know that none of this would be possible without the tremendous support of Team Ellie Bug all around the world (for real).  We love you... and now for some photos:

 Visiting Great Grandma

The boys with their cousins at Bible School... don't even ask how they did... lol

A sack race at the family reunion... a whole new idea for Kaleb

This is how a tubie sunbathes.  She's multitasking!

celebrations… pity… and shame

Ahhh… I feel like we fell off the face of the blogosphere these past five weeks.  I’m sorry if you’ve been awaiting an update – we were enjoying the downtime as a family and working on making summer memories.  You can always assume that no news is good news in our world.  Constant updates are usually a sign of a very stressed out momma (blogging is the cheapest therapy around, y’all).  That being said, we’re excited to post and bring everyone back into our quirky little world… maybe it’s because my mother-in-law just picked up the boys and the little bug is sleeping, so I feel like I have some time and space to think.  Whatever the case… here’s what’s up.

Part 1: Celebrations

Ellie is doing so well at home.  She’s learned to roll over front to back (finally) and she’s back to occasionally rolling back to front.  She’s really close to mastering the art of sitting.  Until it’s something that does NOT come natural, it’s easy to forget how much has to coordinate to stay in a sitting position.  It’s quite tricky.  She’s now stable enough to sit in the Bumbo seat for longer periods of time, and we’ve even moved into the ExerSaucer a bit.  Her Tumble Forms therapy chair is no longer a challenge at all… so it’s where we sit her for meal times.  This little turkey is gobbling up two ounces of purees at each meal before we start her tube feed.  This is double what she was taking just two weeks ago.  OT does wonders for this kiddo.  I remember (not too long ago) when we could barely get her to take 5 mL at a time (1/6 of an ounce).  So she’s making great strides there.  She’s still very much tube-dependent for her nourishment, but showing signs that she will be able to eat via mouth down the road.  Who would have thought that would be a triumph?  She’s now eaten all the different kinds of baby food purees we have, so that means that I’m free to start making my own.  We were entirely too broke to buy any commercial baby food for the boys, so they just got the food I made… so I’m excited to get back into making food.  OT and PT both agreed with Rae (our daytime nurse) that Ellie is a very fast learner… and extremely social.  Wonder where she gets that one? 

Our very happy girl in her ExerSaucer

Nom nom sweet potatoes... those cheeks are filling out more!

 Her first sink bath after surgery... she was excited to splash

 

She’s only spent a few days on the vent at home.  She’s still on the vent through the night, but she’s off all day every day… unless she’s unusually congested or has trouble keeping her O2 sats up.  It’s nice to have the flexibility to put her on the vent if she seems labored in her breathing… to take the stress and work out of it for her and give her a chance to rest and recover from whatever bothers her.  We still have dreams of one day having her trach removed, but after a very scary trach change a few weeks back, I have a feeling that it’ll be around for a while longer.  Who knows how long a “while” is?  We have a sleep study in mid-August that will give us a better idea of where she stands from a sleep apnea stand point.  That’s not even inpatient… just a quick, overnight outpatient visit.  Yahoo! 

We had a cardiology appointment at the beginning of the month and Dr. Luby was so excited to see us.  She kissed Ellie on the forehead and said that her echo was normal.  NORMAL!  That’s never a word we’ve heard from the cardiologist about our daughter.  What a celebration this was.  She had an EKG that confirmed that Ellie’s completely out of heart block, as well.  Praise God!  At the time, Ellie was just on aspirin and her storming med, propranolol.  We had concerns about her heart rate dipping into bradycardia while she was sleeping, so we asked if we could wean down on propranolol and eventually get rid of it and see how she did.  I told Dr. Luby that I’d actually missed a dose of it the previous weekend… and another single dose the weekend before (Ellie gets 3 doses a day).  I was so embarrassed saying this because dosing meds for this girl was always so regimented before… there was a science and structure to it all.  Once she was so healthy, it was easier to slip up.  I slipped up… twice.  Dr. Luby said, “Well, if she was okay when you missed a dose, just stop giving it”.  So we did.  She hasn’t had another dose of propranolol since her appointment on 7/1.  And know what?  She hasn’t stormed.  A few days later, she was done with aspirin.  That means that our sweet girl is completely med-free… for the first time since she was three weeks old.  That’s a HUGE milestone… for her… for me… for her nurses… for her quality of life.  And no storming?  What an amazing relief.  I think I downplayed just how scary storming was… until I went back and watched a video of what she used to look like when she was storming was I overcome with how much she was going through that we just compartmentalized as a “normal day” for Ellie.  We’re happy to close that chapter of her book.  While the origin of her storms was never known, it was clearly related to her severe cardiac condition… which is normal now. 

I thanked Dr. Luby again.  I hugged her and said that I don’t even have words for how grateful we were.  I can’t imagine the course we’d be on if she hadn’t pushed so hard to get us to Boston.  She sent all of Ellie’s medical files, yes, but she also sent a letter from herself to the head of cardiology in Boston/Harvard Medical.  Then once he had the files in hand, she called him… every day.  She called from different numbers so that maybe he wouldn’t know it was her calling… just to check up on the status of the decision for our daughter.  She said he’d answer and say, “Hi, Luby”.  She’d say, “How did you know it was me?”  “You called from a 937 area code… you’re the only person who calls from a 937 area code.”  Gotta love that kind of persistence… gotta love someone who advocates for your child just as you would advocate for your child.  At the end of the appointment, we hugged again and she said, “I’ll see you in three months.”  What??  Three months?  We were used to seeing her every week… week and a half if Ellie was doing “okay”.  There were times when Dr. Luby called my cell phone every single day between appointments, too… because she knew how severe our situation was, even if she didn’t let on how concerned it made her.  So it was already weird to not see her for six weeks… three months?  That’s amazing.  But we’ll miss her.

Taking off her socks before her appointment

Not too thrilled to have another EKG

So we’re spending our days doing therapy with Ellie hoping that maybe she’ll be able to sit on her own by her birthday in September.  Hoping that she’ll learn to clap soon… or start banging toys together.  This is exciting, but brings me to my next segment…

Part Two:  Pity

There was something so exciting about milestones with the boys.  So much pride I had when we went to their appointments and I could bust through that Ages & Stages questionnaire like my kid was crazy advanced or something.  Now, those questionnaires cut deep.  And we have to go through them pretty regularly.  We spend so much time marveling at Ellie’s milestones because she doesn’t burn through them one after another.  When she found her hands, she stared at them for weeks… never doing anything more than wriggling her fingers and watching in amazement.  While it’s so awesome to move through these slowly and appreciate how much babies have to learn to do things we take for granted, it’s painful to sit through these questionnaires answering question after question with “no”.  Does she pick up toys and bang them together?  No.  Does she sit unassisted?  No.  Does she reach for you to pick her up?  Never.  And the one that really cuts deep right now, Does she say mama or dada or baba in relation to said things?  I usually manage to squeak out a, “She’s silent… so, no”… trying to play it off with a nervous chuckle afterwards.  I know the person posing the questions is just going through one of the to-dos on the massive assessment list they need to go through, but I always sit there holding this child that’s so amazing and strong and determined… but I feel deflated as she’s graded according to these abilities that she’s far from attaining.  I wish there was another way of quantifying her abilities.  I don’t dare look at those questionnaires anymore.  I used to do this with the boys so that I could see if they were “on par” for a typical two month old… three year old… etc.  I know that if I would look at the checkboxes now, they’d probably say that Ellie is on par with a 3 or 4 month old.  And that sucks.  She is a really fast learner, though, she really is.  She’s full of determination and has the sweetest disposition.  And her smile, oh her smile… it encompasses her whole face and makes all worries and stress melt away. 

I see posts by friends who have babies that are the same age as Ellie… pulling themselves up on furniture… venturing into first steps… wow!  I’m so very happy for them… I remember the pride and excitement in those moments with the boys.  But this is where the pity sets in… for myself… for Ellie.  I hate that feeling… but it’s real… and I promised to share what is real here.  We visited dear friends of ours who have a new baby.  That little monkey was 7 weeks old and was smaller than Ellie, of course, but not dramatically so.  He was sweet and soft and strong… strong… and felt so sturdy!  And he cried… and I had to fight back tears as I listened to him cry.  Oh, that sweet sound of a baby crying.  There’s something about it that’s so fragile and needy that makes a momma yearn for that baby.  I hadn’t heard a baby cry in a long time.  It was a wonderful, painful sound to me.  I’m realizing that there’s this whole other world, a private world, to raising a child with special needs.  It’s not that I’m jealous of the abilities of other kids… not at all.   It’s definitely not that I’m disappointed in Ellie’s abilities at all… it’s just the reminder of where she “should” be sometimes sends me into this pity party.  I try not to stay there long… it’s not a good place to be.  

We try to shake it off and get back to being thankful and amazed by the marvel of a daughter that we have.  She is a warrior and we’re so very proud of her.

Part Three:  Shame

Another great feeling, right?  This one is about me… so I’ll keep it short.  With all that Ellie’s gone through lately and come through with flying colors, I started to realize how much I’ve taken my wholeness for granted.  I have a healthy, whole heart… I have a very able body… I have lungs that need no help functioning… I have muscles that have been very strong and athletic in the past.  What did I do with these gifts?  Well, I sat on them… literally.  Earlier this week, I decided to go on a run to relieve some of the stress I was feeling.  Want to know how much more of my body moves when I run than it used to?  No… you don’t want to know.  It’s not cool.  The last time I was an avid runner was 2007… as I started running, I realized that was 8 years ago.  Seriously?  The last time that I was consistently physically active was while I was pregnant with Lance and I was swimming and playing competitive tennis several nights a week.  So, I’m ashamed of what I’ve done with this healthy body I’ve been given.  And I’m going to do my very best to take better care of it… because health isn’t something that’s any fun to mess with… and an extra 40ish pounds moves entirely too much when I run.  Yeah – I said it… 40ish… ugh.  So here I am, toasting with a glass of ice water to a healthier lifestyle ahead.  I know it’ll be a long journey… but I ask for your support as I try to prevent myself from squandering this gift.  I don’t have the time nor the energy to obsess about this and focus on only this… but things have to change.  Here goes nothing!

Last, but absolutely not least on my list of updates, I’d like to ask y’all for prayers for friends of ours.  The world of complicated kiddos is a tough world to live in.  We’ve bonded with these families and love them dearly, and these families could use your prayers.  Either their kiddo is in the midst of unknown territory for them, or their kiddo is in the midst of a long-fought battle… desperately holding on to the glimmer of light at the end of the tunnel… maybe their kiddo is undergoing a very complicated surgery this week… or their kiddo was just pummeled with more impossible news to swallow.  I’m not going into detail at all… these are not my stories to write… but I wanted to throw out some names of kids that desperately need your prayers.  Pray for healing and comfort, pray for understanding and peace for the families, pray for answers as the unknown is overwhelming and difficult… pray for strength as these kiddos continue to battle the odds every day.  Prayers for: Savannah, Sofia, Abby, Khloe, Dominic, Tillery, Jax, Charlotte and Austin.  If I’m missing any (and I know I am), I’m sorry.  Just say some prayers, folks.  And pray, please, for my little nephew who hasn’t yet made his appearance today (his due date).  We’re anxiously awaiting his arrival – pray for a smooth delivery and quick recovery for momma and baby.  We’re excited to welcome another family member very soon!

Today we celebrate all the victories we’re seeing every day… swallowing back the feelings of doubt and pity and shame… and pushing forward because surely, tomorrow is a better day, and praying for all of those who are not having the best go-round right now.  Below are a few photos to capture what’s been going on with us these past few weeks.

Lance coloring with his friends

Ellie... being her flexible little self

Car rides are boring

Kaleb - with a toad on his head... oh, boys!

post-shower... the only time they've been mud/sand/chalk free all day

Captain America (Kaleb) was in charge of OT today

Lance as Capt. America this time

Patriotic crew

Miss G taking a nap with Ellie bug

Ellie & Spencer

The boys on the teeter totter

Being boys while Daddy played softball

Thrill ridin' - this thing was soooo slow

Learning how to change the oil

Capt. again... watching cartoons... they love these outfits

Lance showing Ellie how to play his game & match colors

It must have been an exhausting game

Thank you all so much for following along.  We are thankful for your thoughts and prayers each and every day.  We love you all!