A whole new baby…

The title of this post really says it all.  We are Day 3 post-op and we have a whole new baby!  Ellie is almost completely out of heart block… her little heart was conducting its own signal all day.  While she was sedated the last few days, she was completely vent-dependent.  She wasn’t initiating her own breaths at all.  Last night, they had her off of ventilator settings and just on CPAP (just stands for continuous positive airway pressure).  This means that she is taking each breath on her own… the machine just gives her a little more volume with each breath.  Around 8am, they went right to the artificial nose, which offers no support at all in breathing.  Ellie spent about 12 straight hours on the nose and kept her oxygen saturation in the high 90s.  What a difference!  Her last chest tube came out today, too.  We were able to give her a bath with the bathing wipes and we were finally able to put her in clothes.  We sat her up in her car seat, then her Tumble Form chair.  She even watched some cartoons for a little while.  She was fully awake… which was good and bad, I guess.  It was great to see her eyes and see that she was able to focus on us and shake her rattle and grab our fingers.  It was heartbreaking because she was pretty upset today.  She’s going through withdrawal from the sedation meds, so she’s more irritable than normal.  Plus, she was so jacked from medication that she didn’t sleep at all today.  For a kiddo that normally spends a good part of her day napping… a day of little to no rest isn’t much fun. 

We pulled the sleep study results from Cincinnati… and I think they’re going to do another sleep study here to see how it’s maybe changed with a trach.  Not sure yet.  We are still looking at another procedure on Monday to dilate the subglottic area in her trachea.  Not sure how that’ll impact her dependence on the trach… but it’s already a huge step in the right direction that Ellie is not vent-dependent through the day.  That is a life changer for all of us!  If she continues to need CPAP at night, that’s perfectly fine. 

After dinner tonight, I was finally able to hold Ellie.  Oh, how glorious that was!  I can’t get enough of those cuddles.  Our sweet girl is returning to her sweet self… slowly… but faster than I could have imagined after such a huge surgery.  Dr. Baird (our surgeon) has been by to see us several times each day (even Saturday).  I am so incredibly impressed with this man!  Not only did he give Ellie a chance to have a normal life and life expectancy… he is advocating for her like I’ve really only seen our cardiologist, Dr. Luby, advocate for her.  This is the best feeling for a parent, for sure.  Praise God!

So… we couldn’t be happier with the care we’re getting in Boston.  We could use some mid-western pace, consideration, and personality up in here… but we’re nothing but impressed with the care we’re getting bedside.  And as we found in Cincinnati, this has been an awesome opportunity to network with other parents going through some of the same things we are going through. 

Thank you for all of your support, thoughts, and prayers.  Our God is surely showing off with this little girl and the miracles he’s working in her and through her.  Our prayers have been answered in ways we couldn’t have comprehended before. 

A few pictures from yesterday and today for you:

She doesn't look too happy here - but this was after 

she finally had all of the stickers off of her face

Still a little groggy, but sitting up in her car seat and able to wear clothes (and a bow)

Giving us a stinker face

Peppa Pig calmed her down a bit this morning -

she's now rocking the artificial nose

I think she threw up on her other dress on purpose... 

she was ready to try on more of her cute clothes.

Finally getting to hold my sweet girl again - ahhhhh... so wonderful!

Day 1 Post-op

I just wanted to send y'all an update and tell you that our sweet girl is every bit the rock star that we hoped she'd be.  They reinserted her trach today and extubated her - so no more tubes in her mouth and no more tape on those puffy cheeks.  Oh, to see that beautiful little face again... and pink this time!  They are a little concerned (using "concerned" loosely here) about her heart rhythm.  Early this morning, she was in first degree heart block.  This means that her heart was conducting a signal, but it wasn't a normal rhythm.  She's still on the leads to control her heart rhythm right now, so no worries.  A few hours later, they checked again and Ellie was in complete heart block.  From what I understand, it's not conducting the signal at all from the right atrium through the ventricles.  This isn't out of the ordinary post-op - they're not too concerned about it.  They'll be watching this closely.  If it doesn't return by day 10 post-op, Ellie will likely earn a pacemaker.  It is a good sign that she was in first degree earlier in the day... so complete heart block may just be a transient thing that she moves past.  They won't check again until tomorrow morning because messing with her heart rhythms right now throws of her hemodynamics (errr... the equilibrium of all of the motions and pressures and such related to her blood).

Her liver was enlarged this morning - which is just an indication that her right ventricle was a little stressed... nothing too concerning, again... something we're watching.  And she was VERY puffy.  By mid-afternoon, she'd responded beautifully to diuretics and had peed off a huge amount of fluid.  Her chest and legs were instantly less puffy and her liver had gone down some... excellent!  They've even started putting some yum yum in her belly - VERY SLOWLY.  They're pushing for a procedure early next week that would open the subglottic stenosis (narrowing of the trachea between the voice box and the stoma site).  This could greatly impact Ellie's dependence on the ventilator and possibly the trach... but we won't know the impact until we go in for the procedure.  This is really good, really exciting news.  We'll keep you posted on that... trying to be cautiously optimistic at this point, though.

Ellie is still heavily sedated, which is a good thing because we know she's comfortable and able to rest.  They had to work very hard to find the sweet spot in medicines to keep her this way (this has ALWAYS been a struggle for Ellie).  She has not stormed at all yet - but we'll get a better scope of her storming outcomes once she's off of sedation.  We're trying to keep her sedated for a little while longer... at least until we get the chest tubes out - likely tomorrow.  Ellie has periods where she's easily roused - a very good sign - but something they need to make sure is controlled.  We want her to stay super comfortable and not have to worry about her shenanigans and wiggles with so many tubes and accessories right now.  And we surely do not want to risk stressing her into a storm.  The stress of storming could be detrimental to her new septum and valves.  The medical team has a plan in place to treat storms if they arise.  I may or may not have taken advantage of her sedated state to give her a fresh pedicure.  I mean... she can't wear clothes or bows right now... she's gotta have something!  Thank you, dear friends, for following along and praying for our sweet bug.  We are endlessly amazed by the team here and how our surgeon is advocating for our little girl.  We are in great hands.  We feel your love and presence.  Here are a few pics for your viewing pleasure:

No more tape on those beautiful cheeks!  Trach is back in... looking better all the time!

Like little disco balls

Posters!  Yeah - it's like she's a college student with posters on her walls... she's cool like that.  The black and white one says, "Welcome to Ellie Bug's Room  Be Advised:  You are now in the presence of a warrior" 

THE big day

I'll continue to update this throughout the day as we get updates from the OR...

8:45am:  they just wheeled Ellie back to the OR.  They did her final scrub down at 6am and we haven't been allowed to hold her since.  I hope it's okay that we showered her with kisses and tears before they came in.

She had a pretty rough night last night... I'd rather not tell that story now.  Ellie was a very happy little girl this morning and was loving her snuggles.  Here are just a few shots of us sending her off.

Cuddles w/ Daddy

Precious smiles for Mommy

"Shut it, Daddy" (jk, she's enjoying hand kisses)

Sending her to the OR... ugh... never gets easier

10:15am:  They have finished the rigid bronchoscopy and they've set all the lines and IVs and done the anesthesia deal... and they've just made their first incision.  We should hear another update around 11:45am.  On a side note, we just met an old friend in the lobby who lives in the Boston area and stopped in for a chance (you know I don't believe in chance/coincidence) encounter with our family.  What a sweet man!  I'm endlessly amazed by the love that is pouring out for our baby girl from all over.  Thank you for your prayers.  We'll keep you posted.

11:47am:  Just got the update that she is now on the hat (heart in Boston talk) bypass machine.  Now the dirty work begins.  She was able to go on bypass without any issues, though - that's a big step in the right direction!  The actual heart repair and artery repair can happen now.

1:10pm:  Another update... no real "meat" to this one.  Everything is going "so far so good".  No surprises... always a good thing.  Our next update will come at 2:45pm.  Thank you for your continued prayers!

2:42pm:  Ahhhhh... she is back off of the bypass machine and the surgical part is done.  She did well.  They're closing her up now.  Praise Jesus!!  We will post again after we talk with her surgeon.

3:30pm:  Just talked to Dr. Baird.  How do you thank someone for fixing your child's heart?  How do you thank him for giving her the opportunity to have a life that you didn't think would be possible for so many months?  Ugh - the weight on my shoulders is lifted.  They were able to do a full 2-ventricle repair on our sweet girl... the best possible option!  They removed the portion of the pulmonary artery that contained the band, too.  Ellie has a beating, normal functioning heart right now!  I can't believe it!  Her rhythm isn't quite back to normal... which is pretty common post-op... they hope that they can get it back on track in the next few days.  The scope showed NO tracheomalacia or bronchomalacia (2 of the reasons she was originally trached and vented)... her larynx (voice box) looks good, too.  There is some subglottic stenosis (a narrowing between her voice box and her trach stoma).  This can possibly be resolved with some dilation (which is a quick OR procedure).  If so - Ellie may not need a trach and ventilator for much longer.  This is absolutely amazing.  Oh, we are so proud of our Ellie Bug and we're endlessly grateful for all of the thoughts and prayers that have carried her (and us) through this journey so far.  God is surely good!  Ellie will be heavily sedated for a few days yet... but before long, we'll have our sweet girl back better than ever.  Thank you, thank you, thank you!  We love you dearly!

8:10pm:  We were finally able to see Ellie around 5:45pm.  She looks amazing!  She really does.  I know these pictures may be hard to look at for some, but this is the best that Ellie has looked post-op.  She's pink... PINK!  This is a huge celebration.  Her lips are this glorious bubble gum pink color.  They've never been that color.  Her mouth has always had a blue/purple tinge to it... never bubble gum pink.  Her tongue is even pink.  Small celebration?  Not for a little girl who fought to have pretty saturation levels every day.  She has a lot of accessories right now (2 chest tubes, a foley catheter, 4 arterial/central lines, a peripheral IV, a tube into her stomach to vent it, intubation for her airway, her usual pulse ox monitor, leads to her heart monitors, a monitor on her forehead measuring oxygen saturation to her brain, plus electrodes into each side of her heart keeping it in rhythm)... but those accessories will slowly disappear and soon we'll get to see our sweet bug without all the tubes and wires.  She is beautiful and wonderful and quite the warrior!  She'll be pretty heavily sedated for a while.  They may start to let her wake up tomorrow if she seems to tolerate it well.  I can't wait to post pictures of what she looks like just a few days from now.  Thank you for your thoughts, prayers, support and well wishes.  We would not have been able to afford to make this trip without the support we've received for Team Ellie Bug.  You each have made such an impact on our journey.  Thank you - from the very bottom of our hearts.  I know Ellie is grateful from the bottom of her (newly whole) heart.  Praise God.

... Now to finally get some rest!

Our beautiful Ellie bug - we were finally able to see her post-op.

Pink lips... I can't believe she has pink lips!

And she hasn't had a breathing pattern this smooth since she was a week old.

That white number on the bottom that reads 100%?  Yep - that's her oxygen saturation!  I was so excited that I had to take a picture of this, too.  Our little girl has a whole new heart today.  The surgeon had to take parts out and completely reconstruct her septum and valves and repaired her pulmonary artery.  But finally, her heart is not much different from yours or mine.

Ready for a road trip!

Today, we heard back from the surgical staff in Boston and they are getting us in this month for Ellie’s surgery.  Ellie will have a full day of pre-op testing on Tuesday, May 26^th and will be admitted overnight.  She will go in for open heart surgery on Wednesday, May 27^th with Dr. Baird.  They plan to do regular pre-op testing on the 26^th (blood work, other labs, etc.) plus some x-rays, and EKG and a sedated echo.  They’re also thinking about doing an MRI on her chest, too… but will decide if it’s needed that day.  She’ll be under anesthesia this day. 

 A smile on those purple lips... and some super exhaustion in those eyes.  

But she's still such a sweet little girl.

On the 27^th, the surgeon is going in and repairing Ellie’s broken little heart.  This is quite a job, really.  I reposted the picture that I used to describe Ellie’s heart defect about a year ago to help you visualize what she’s missing in her heart.  The surgeon’s planning to repair the huge hole in the ventricular septum (the wall that separates the bottom half of the heart), patch the two large atrial septal defects (holes in the wall that separate the top half of her heart).  The repair on the ventricular septum will create a wall that will divide the one common valve (AV Valve) in her heart and make it into two valves that beat against the new wall.  These two valves will then operate like the mitral and tricuspid valves that normal hearts have.  Once he’s repaired the inside of her heart, he’ll stitch it up and proceed to remove the band that’s around her pulmonary arteries and any scar tissue that might be present from that surgery.  We don’t have a time estimate on the surgery, but I know that this is the surgery that we originally thought she’d have (before we found out that the right ventricle was pretty small).  At that time, they estimated the heart repair at 8 hours.  The removal of the PA band and repair of the pulmonary arteries will tack on additional time, of course. 

The drawing of Ellie's heart... in case you don't remember it from May 2014

This couldn’t have come at a better time.  A week ago, Ellie started to act like she acted when she was in heart failure.  She’s barely awake at all these days and we’re titrating her oxygen up a little at a time to keep her stable.  She’s on oxygen support around the clock.  I know this is typical for ventilator-dependent kiddos, but it’s not typical for Ellie.  She’s exhausted and we’re kind of limping along until it’s surgery time. 

With this news, we’re in the honeymoon phase right now.  We’re so excited that Boston has the surgical plan that we so hoped would be a possibility for Ellie… we’re thrilled that they were able to schedule her in so soon… we’re excited to have the surgery done and behind us… and we couldn’t be more excited about what this means for Ellie’s quality of life and life expectancy.  Excited.  That’s where we’re at right now.  We know that this wanes into paralyzing fear, though.  As much as we try day in and day out to put this in God’s hands, it’s impossible to go about our days without internalizing the heaviness of this all.  We have faith that God will guide the hands of the medical team as they run tests and perform surgery.  We have faith that we’ll bring home a baby that is much healthier than the one that we hold in our arms today.  We have faith that He will carry our rugged hearts through this victoriously just as He’s held us above water these last 8+ months.  While we stand in the realm of excitement now, we know that it’ll be a matter of days before that paralyzing fear arrives and the reality of what’s about to happen to our baby sinks in.  We’re trying to stay on the excited end of the spectrum for as long as possible… so if you see us in the next week… please know that we are well aware of all that is about to happen to our child.  We’re well aware of the incredible risk we’re taking on and putting her up against.  We know this.  If we are happy and lighthearted… that’s because we’re still desperately trying to hold on to the excitement side of things.  Try to keep us there, friends… we need to be there!

As long as this surgery goes as planned, this will be Ellie’s last heart surgery.  We’re no longer looking at a 3-part repair on her heart.  Her second heart surgery should be her last… possibly forever.  That’s the most amazing thing in the world to me right now.  We spent the last five months thinking we’d only be able to have a 1-ventricle repair on our sweet girl.  For a child with Down syndrome, that’s almost a death sentence.  Very rarely do those kiddos live long enough to go to kindergarten.  I don’t know if I’d put it in those words before on this blog.  If she was only able to be a 1-ventricle repair, she’d only have a few years with us… and the quality of life in those years would be pretty awful.  That’s the reality of what we were looking at before… three heart surgeries and then a waiting game for organ failure and a possible transplant and very little time with our bug.

With a 2-ventricle repair, our world has just opened up.  As long as this is successful, we don’t have to look at the road that was so grim before.  We still have plenty of hurdles ahead of us, but Ellie’s quality of life will be normal (well, as normal as it can be while she’s still on a ventilator).  Her life expectancy unchanged from any other person with Down syndrome.  You have to understand that there was no better news we could have gotten this week… no better time than now.  God is surely showing off with this little girl.  Every.  Single.  Day. 

By the time Ellie is 9 months old, her heart will be repaired.  She went into heart failure when she was 15 days old; she was given her first feeding tube at a month old.  At three months old she earned two new holes that would help her eat and breathe for the next few years.  Just before she was four months old, she had her first heart surgery.  She’s spent the last five months getting stronger and developing into the amazing little girl that continues to steal our hearts daily.  I can’t wait for her to be on the other side of this roller coaster of surgeries and tests.  I know they won’t be over… I know different coasters will be waiting for her to board them, too… but I think we’d all be happy to be out of the OR for a while. 

I can’t complain… I know far too many families who have walked a path I can’t begin to comprehend.  Far too many families who would be thrilled to have a child as “healthy” as Ellie… know that I’m not taking this for granted, folks.  I’m by no means complaining about where we are… I’m thankful for where we’ve been and that we’re almost able to wrap up another scary chapter in Ellie’s story.  I’m able to look ahead with so much hope and promise.  I’m ready to take this little warrior to Boston and bring her back for a life with less struggle, a life with less exhaustion, a life that is (dare I say) “normal”.  Praise God!

She joined us at the table and I let her gnaw on a green bean with 

her brand new tooth - looking tired, I know.

Roadside God Moment…

We had an urgent (not emergency, but urgent) cardiology appointment early this afternoon in Dayton.  Ellie’s had a few rough days in a row and we’re pretty sure she’s growing out of her PA band.  Our cardiologist agrees.  The only way to adjust it is with surgery… so it’ll be removed when we go to Boston for her heart surgery soon.  Ellie had an EKG, a chest x-ray, and an echo done today.  Ellie’s having trouble maintaining her oxygen saturation goal of 75% without supplemental oxygen.  This is not the norm for her… but it looks like it’ll be her norm moving forward until we can get her surgery done.  She’s a little blue at times… lips and fingertips are a little purple.  The biggest difference is the look in her eyes.  She still shares countless smiles, but she’s getting tired easily right now and she looks at us with pitiful, watery eyes all the time.  Soooo… it’s time to get this kid fixed up.  We should hear back from Boston on a surgery schedule by the end of the week.  Dr. Luby would like to see us in Boston by the end of the month.

Ellie's EKG today

We were in the office for about 3 hours – left the house at 11:30am and were headed back around 3:15ish.  About 15 minutes into our drive home, our van started squealing (sounded like the transmission was shot).  Brandon pulled to the shoulder right away and popped the hood.  We were on a very busy stretch of I-75.  We found out that when our oil had been changed earlier, the old filter gasket stuck and the new gasket wasn’t able to make a good seal, our oil had slowly leaked out during our drive.  The issue wasn’t what happened to get us there… the issue was that we were stuck on the side of interstate with a ventilator-dependent baby with only half of the battery life remaining on her ventilator (about 3 hours left).  I called our roadside assistance.  They said they could get a tow truck there, but all estimates were at about 3 hours… we’d be out of battery before we were home.  Brandon had already removed the oil filter and removed the extra gasket.  He put the filter back on and ran about a mile up the closest ramp and bought 5 quarts of oil to replace the lost oil.  Then he tried to start ‘er up.  Nothing.  The dash lights were out… like the battery was dead from having the hazards on.  I don’t know for sure. 

A kind soul pulled up behind us.  The woman who got out was none other than the nurse from our cardiologist’s office who just walked me to radiology with Ellie about an hour or so prior.  What are the chances?  This was a nurse that we’d maybe had before… if so, we’d only met briefly.  Today, though, she walked with us to radiology and I had Ellie in just her diaper (she’d just gotten weighed).  This nurse had asked about Ellie’s ladybug g-tube pad.  Here, her nephew has a trach and a g-tube and she was interested in maybe getting some cool Ohio State pads for him.  We struck up a lengthy conversation about trachs and hospital experiences and such.

When she pulled up behind us, we realized that neither of us had jumper cables (dang it… I’d just taken mine out a little while ago).  So Becky, the nurse, took me to the closest truck stop so I could pick up some cables.  During the quick trip she said that she drove past and recognized me, knew that Ellie had limited battery life and drove up an exit to turn around and check on us.  She told herself that if we were still there when she came around, that she’d stop and help.  She called it God-ordained.  I call these God moments.  Just before we got back to B and Ellie, a local police officer stopped to help.  We tried to jump the van - to no avail.  With still too long to wait on the tow truck, the officer called a local shop that had a truck there in about 15 minutes.  We had to follow the truck to the drop-off and pay the driver, fill out paperwork, etc.  

Ellie was NOT impressed with this pit stop

After this, Becky drove us home.  To say this was out of her way would be a gross understatement.  This took up two-and-a-half hours of her evening.  We talked schools, we talked kids, we talked churches.  As it turns out, we actually know some of the same people.  Brandon talked to her about LPN school and the transition into an RN program.  It was a great experience… GREAT!  Our van motor might be toast, but we met an awesome person along the side of the road.  We finally made it home around 6:30pm.  We weren’t home for more than five or ten minutes when our ventilator alarmed as the battery was dying.  Talk about God’s timing!  From now on, we may pull the battery out of our stationary vent to tote along with us in case of emergencies like this.  So grateful for the kind soul who turned a lousy event into a nice experience!  

P.S. Here are a few bonus pictures for your enjoyment...

The boys with their silly faces on

Lance got up a little too early, then snuggled up close to Ellie and fell asleep on her boppy

Heading to the 617!

I’m so excited right now that I’m literally shaking as I write this.  We just got the call from our cardiologist telling us that the team in Boston sees no reason why they cannot do a 2-ventricle repair on Ellie.  Praise God!!  I can’t begin to tell you how great this news is.  Is it still open heart surgery?  Yep.  Is it still terrifying?  Absolultely.  Is it the best hope we’ve heard from doctors yet?  You bet.  Dr. Loche (head of cardiology at Boston Children’s) said that he has full faith that they’ll be able to do a 2-ventricle repair on Ellie this summer.  We don’t have a solid timeline yet, but I think we will soon.  It’ll be this summer, though.  They plan to repair her ventricular septum and patch her atrial septum in a way that will allow her right ventricle to grow to the size it needs to be.  They’ll also remove the PA band and any scar tissue associated with that in the same surgical procedure. 

This couldn’t have come at a better time, really.  Ellie’s been having a little trouble since Friday keeping her O2 sats up.  She does beautifully as she sleeps, but when she’s awake and active, her lips, eyes, and fingertips get dusky… sometimes blue or purple.  She is not tolerating the humid weather, either.  We’ve already had to kick in the a/c for her (I can’t say I mind, either).  We have an impromptu cardiology appointment tomorrow (we weren’t supposed to go in until the 20^th) so that they can do another echo on her to see how she’s doing.  These are signs that they warned us of with her pulmonary artery band… signs that she’s growing out of it.  The only way to adjust it is with surgery… so if we’re going in anyhow, I would prefer to get out to Boston to go in for both procedures at once.  Right now, Ellie’s still a very happy little girl, but she’s starting to show these signs and you can see in her eyes that she’s fighting… that she’s just so exhausted just being awake.  I’m ready to get her to Boston and get her heart repaired… but also scared out of my mind of such a big procedure on her.  This is just something I have to trust The Almighty with!

This is all the update I have right now – I’ll update you more after our appointment tomorrow and obviously as we hear any timeline from Boston.  Celebrations, my friends!!  Thank you for your love and support… and mostly for your prayers for our sweet Bug!  Love you all.

8 months old already

I cannot believe that our sweet Bug is already eight months old.  She is getting bigger by the day.  She is now laughing – although you can’t hear it.  Her sneezes are the funniest thing... she makes all the facial expressions of a sneeze, but the sound comes out of the exhale port... which is about belly-button level on her... so weird.  She is able to roll over and push her torso up a bit on the floor.  She is able to sit with very little assistance and is thriving with the constant interaction she has at home.  She’s been to church with us a few times, she’s been out to eat a few times (where she's eaten mashed potatoes, guacamole, and queso blanco)… and she’s even gone on a grocery shopping trip once.  She’s been to several family gatherings and she’s already enjoying the summer campfire season.  We’ve taken many strolls through the park and one very bumpy stroll through the woods. 

Ready for spring/summer in one of her MANY dresses

She is eating more by mouth now and she gets super excited about her playtime with her brothers.  She might be complicated, but I’ve never met a more pleasant little person in my life.  I wouldn’t say that she’s happy all the time (I know this is often said about kiddos with Down syndrome), but I would certainly say that when she’s happy, she’s happy with every ounce of her being.  She shows you she’s happy with her whole face… not just her mouth.  Her eyes light up and those big cheeks smash up, squinting her eyes until they’re almost shut.  Her eyebrows raise and her arms and legs kick frantically while she wriggles around, full of joy.  She lets out these adorable little squeals (which I’m completely incapable of capturing on camera for you).  She is just a joy… plain and simple.  I do daily trach care on her – trach care is the farthest thing from fun for Ellie.  It takes about ten minutes and she’s usually crying the entire time.  As soon as I’m done, I scoop her up and cuddle her into me.  She snuggles in as I dry the tears that ran down her face and into her thickening hair.  I always feel awful.  She wriggles into my shoulder, then rolls her head to the side, raises those eyebrows, and gives me a giant smile.  See… a joy.  And forgiving to boot!

We had a pulmonology appointment in April where they were very happy with how Ellie is doing.  They beefed up her formula some because she wasn’t gaining any weight and we talked in length about expectations for how long she’d be trach dependent and ventilator dependent.  Dr. Benscoter (the pulmonologist) said that “typical” kids who are trached and vented for the same reasons that Ellie is tend to wean off the ventilator around 2 years of age… then they have their trach in for about another year.  Kids with Down syndrome tend to be on a little slower time table, but the outlook was still that she’d likely not have a ventilator or trach when she’s old enough for kindergarten.  So, that’s good.  I kind of hope that she’s more on par with a “typical” kid, but I won’t hold my breath too much, there. 

We’ve had three cardiology appointments since we’ve been home (about every other week right now), and we talked with our cardiologists this morning, too.  Still waiting on word from Boston.  They finally received the last of the paperwork from Cincinnati in yesterday’s mail and they will have a decision for us by next Monday.  I will certainly update you all on that.  I am hoping and praying that they will be able to do a 2-ventricle repair on Ellie. 

Once we get the word, we’ll likely be in a mad rush to secure travel plans and such… which might be a little chaotic.  This is another instance where all of the funds raised for Team Ellie Bug will be put to great use – we are eternally grateful for all of the love, funds and prayers sent our way.  You all are just too kind!  The Ronald McDonald House of Boston only houses families of kiddos with cancer or who are undergoing a bone marrow transplant.  So we’ll need a hotel if we head that way.  We’ve also heard that it’s kind of a nightmare flying with a kiddo on a ventilator… so we’ll probably make the 14-hour drive instead of flying.  At least we’ll then have a vehicle in town, right?  This is all hanging on the answer we get next week… but I’m trying to mentally prepare myself.

Last week, Ellie was pretty under the weather.  She was puffy (yes, more puffy than she normally looks) and just wasn’t feeling like her happy little self.  She required supplemental oxygen for several days… no big deal, though.  I don’t know if I mentioned before that while she’s on a ventilator, she does handle room air just fine.  Room air is about 21% oxygen, and she does great on that.  The ventilator gives her a certain amount of pressure with her breaths to help rid her body of CO2.  When she’s sick, she usually requires a little extra oxygen fed into her line, though.  This is where I am so grateful for the ventilator and G tube.  When she’s getting sick a lot, I can’t imagine how hard it’d be to get her meds down if we didn’t push them through her tubie.  When she’s not feeling well, it’s amazing what a few days on a small, supplemental oxygen dose does for her.  She’s pretty resilient, really… much more resilient than I thought she’d be. 

I’m still working on getting myself organized and working through getting our house more organized.  You’d be amazed at how I was able to stash 12 big boxes of supplies neatly into drawers and bins and shoe organizers in our house.  Our closets, Ellie’s room and the laundry room had to get overhauled and my van is next up to bat.  I finally have a real work space again (and it sure feels good to be really productive).  I have to admit that it’s kind of refreshing when everything has a place.  I’m far from perfect in this realm… but I’m inching my way there.  Shut it all you organizational gurus who are baffled at my chaos.  Kidding! 

We have a daytime primary nurse, Rae, that we absolutely love.  Last night was the first night that we had our overnight nurse, Danelle, that we’ve been trying to secure since January.  She seems really sweet, too.  Can I tell you how amazing it was to sleep in my bed and not get up to alarms through the night?  I have kind of been splitting my time between bed and couch these past 6 weeks… and have not had an uninterrupted night of sleep until last night.  That’s since Ellie was born, really.  She wasn’t sleeping through the night when we went into Cincinnati… there was no solid night sleeping in the hospital… and since we’ve been home, we’d only had 2 or 3 nights covered, I think… and I still got up to alarms as I hear them.  I know, I know… some of you have kiddos that don’t sleep through the night yet.  I feel ya.  I’m not saying it’s been impossible… clearly, we’ve still functioned… just with lots of coffee!  I have to brag that it was really nice to sleep through the night last night, though… I do!

So that’s that.  I know I’ve been terrible at updating the blog lately, but please know that no news is usually good news on the Ellie front.   I WILL post an update when we get word from Boston – no matter what news we get.  And I WILL bombard you with pictures now.  Enjoy!

Thank you so much for all of your love and support.  We are so happy to have spent the last six weeks at home with our Bug without having to get readmitted for any reason.  We’ve had plenty of appointments… and we’ve had two small bouts of sickness… but she’s quite the rock star and we know that the prayers and good vibes you’ve sent for our girl are working.  Thank you!

Just after a bath - can you see that her hair is coming in a little more now?  

It's more brown than red now.

She pushed up over the boppy so she could watch TV like her brothers.

This face!  Kaleb at our chiropractor's office

Ellie giving her brothers a karate kick.  She is SUPER flexible!

Lance made artwork for Ellie... he was very proud of it.

The boys picked out her Strawberry Shortcake jammies and then turned on Strawberry Shortcake to watch before bed.  Cuteness overload!

Our chunky monkey snoozing

Kicking Daddy in the face - take that!

She's able to sit in her Bumbo seat - doesn't look like much, but this was a big deal!

Kaleb helps with "Pancake Friday" each week... usually around 6am.

We finally got a Tumble Forms chair for Ellie to use at home.  She loves it!

First toad find of the year - walking in the woods... ahhh, the woods!

Lance totally creeps me out with this smile thing he's got going on, btw.

Kaleb was super excited about the toad.