Home & healthy

We are now 2 weeks post-op and home!  Our nurses are back at it in the house – which is amazingly helpful!  The boys are home with us (finally) and all is back to normal… but a better normal than we had a few weeks ago.  During our trip back from Boston, I was pushing Ellie in her stroller and something came over me where I imagined Ellie being a toddler – maybe three or so.  She was sitting between my knees facing away from me.  I was combing my fingers through her long, caramel colored hair, pulling it into a ponytail.  Then she hopped down and walked away, still not facing me, but I watched as her ponytail bounced with her stride, ribbons dangling down around that sweet little spout of hair.  This was the first time I’ve really imagined Ellie as anything more than a baby.  And it was wonderful!  I was instantly misty-eyed at the thought of her running around.  For the first time, I could actually see her as a healthy little girl… a little girl with a bouncy ponytail tied in ribbon.  A little girl off to trample through the mud with her brothers, I’m sure… but a little girl, nonetheless.  She wasn’t a baby.  For the first time, she’s healthy enough for me to imagine a future for her… and that’s amazing! 

I had full faith that she’d do alright before.  I had no doubt that she was strong enough to pull through the dark, scary days she’d gone through… but for the first time, I caught a glimpse of a healthy (dare I say, “normal”) little girl.  Ahhh – what a moment for a mom!  I had hoped for a future for her, of course… I’ve thought about where she’ll go to preschool and grade school, I’ve even thought much farther down the road and considered home plans that had an apartment attached or over the garage in case Ellie doesn’t become independent enough to live alone.  I hope, for her sake, that’s not the case… but I mentally prepare myself for all options.  I have plans to teach her things and enroll her in activities and such, of course… every parent thinks of those things.  But I hadn’t fully imagined her or visualized her as a child.  I don’t know if I’ll ever get that image out of my mind… the image of her bopping around with a bouncy ponytail.  I hope it’s forever back there, reminding me of the amazing hope that we gained after enduring what are sure to remain the scariest days/weeks/months of our lives.

Our sweet girl is doing great!  We can’t wait to share her with the people who have prayed so hard for her.  We love when we see others when we’re out with her… we are excited to bring her back to church this weekend.  We love that we can take her on a walk and outside to watch her brothers splash around in their little pool.  We love that she’s able to eat more by mouth these days… and she’s awake so much more.  We love that we’re just dealing with teething pains right now (although teething sucks… let’s be honest).  We look forward to allowing our boys to get back into preschool next school year.  They missed last year because Ellie was too vulnerable to expose to all the ickies that come home from preschool.  They couldn’t be more excited about going to school this fall. 

I don’t have much more of an update for now… things are going well… praise God!  We’ll meet with our cardiologist soon and then get a referral for another sleep study within the next few weeks.  Once we’re on the other side of that, we’ll have a better idea of how we’ll move forward with Ellie from an ENT standpoint.  If she still has severe obstructive sleep apnea, they’ll be searching for a source of the obstruction and possible treatments there.  If they don’t see obstructive sleep apnea anymore, we may be able to start weaning off the ventilator at night and possibly looking at options to get rid of her trach.  I’m not holding my breath on this… but I am excited about the possibility of getting rid of it sooner rather than later. 

To give you an idea of how much this last surgery has impacted how Ellie looks and feels, here is a side-by-side of how Ellie looked on our way TO Boston and then another picture of her on our way HOME from Boston.  Amazing, right?  In the left picture, you can see how gray/purple she was.  Her mouth was always purple.  She was barely awake and on quite a bit of oxygen.  Her eyes tell the biggest story, I think.  In the left, she’s beyond exhausted.  We were just so used to seeing her this way… so when she looked pink and healthy post-op, we literally had to spend several days just staring at her, appreciating how beautiful her coloring was.  When she was awake and back to her healthy self, we were thrilled with how much energy she had.  She’s amazing!  Her surgical team is amazing… all those who held us up in prayers through her procedures and surgeries are amazing… all of those who have offered support or meals or who have taken care of the boys are amazing... and our God is surely amazing!  Thank you all so very much - we're thrilled to share our little girl with you and celebrate how wonderful her new little heart is!

Same seat... same time of day... totally different baby!

Look at the life in those eyes!

I thought this x-ray from her follow-up appointment was cool for 3 reasons:

1. You can see all of those teeth waiting to break the surface... they look totally scary! 

(she has three right now... and two more begging to break through)

2. You can see how her trach looks inside her throat.

3. You can see her sweet metal sutures holding her sternum together.

The boys playing at grandma & grandpa's pond

Daddy showing the boys how to make big splashes in their tiny pool

Weekend in Maine

We were discharged from the CICU at Boston Children’s on Friday afternoon.  Because Ellie is still ventilator dependent, we were not able to move to the cardiac step-down unit before discharge.  It’s not common to be discharged from a critical care unit… so it can be bumpy at times, but it wasn’t too bad.  We went our way with only 7 daily doses of medication (we came in with 14).  Two of those doses will drop off tomorrow and they may drop another at our follow-up appointment today.  That would bring us down to just 4 doses of meds a day (propranolol for storming and aspirin for cardiac post-op).  That’s amazing!  We can no longer make jokes about her being on Viagra, though… dang it!  We have a follow-up appointment to get a chest x-ray and EKG today and they want to see that she’s nice and stable before they send us all the way back to Ohio.

We enjoyed our time in Boston, but I’m not one for city life, really.  We liked to have so much within walking distance, and always a new place to try and things to do (the hospital gave us tickets to a Sox game while we were there… awesome)!  But this country girl was ready for something slower and quieter.  Per the suggestion of our primary nurse, we headed north to the southern coast of Maine.  We stayed in Ogunquit through the weekend.  We didn’t arrive until dark on Friday, so we did nothing more that pop across the street to a restaurant.  The guy who referred us said, “it has bar food… dinner if you want”.  Sounded like our kind of place.  When the menus were void of prices on most items, we knew we were not in our comfort zone.  When the waitress came around with complimentary amuse bouche, we both laughed hysterically.  This was a little too fancy for my t-shirt and jeans… but hey, it was the only place within walking distance and in our defense, it was described as having “bar food”.  It was delicious… but we may have been a little out of place.  It was dark with nice landscape lighting around the full-length windows.  We heard another guest say, “Oh, look – an animal!”.  Another guest facetiously said, “I think it’s a bear”.  It was an opossum… a gross, nasty opossum wandering through the landscape, classing up the joint a bit.  Nice!

Saturday and Sunday were beautiful.  It was a little cloudy, but still very nice on Saturday.  We walked out onto the beach with Ellie… JUST ELLIE!  This was incredible.  The first few days of Ellie’s life she was tethered to monitors and cords and such… then we were able to bring her home for a while with nothing.  In other hospital stays, she was back to wires and such… and then at two-and-a-half months, she was in Cincinnati.  While there, she was never free of wires and tubes.  She came home with some pretty schnazzy accessories that we learned to tote around at all times.  It just became the norm.  So to walk out onto the beach with a baby in the stroller, and pick up just the baby and walk out into the surf was awesome.  We hadn’t held “just a baby” in seven months.  We were able to put her in one of the baby carriers and walk through shops and such with her.  I treasured this.  Putting the boys in infant carriers was one of my favorite things… we haven’t had Ellie in a carrier since she was about a month old.  She was either tethered to a million things or simply too hot (cardiac babies tend to be sweaty).  Celebrations!

Sunday was even better.  On Sunday we walked to Marginal Way… an ocean-front walking path with breathtaking views.  It was a long walk, but so worth it.  The weather was perfect, too.  I only wished I’d brought my nice camera so that I could maybe do a little justice to how pretty this place is.  This is somewhere I’d come again in a heartbeat!  I’d want to bring my boys, though.

We’ll be headed out soon to take Ellie to her follow-up, then start the trek home.  I can’t wait to see those little guys.  I miss them so very much.  I’m also looking forward to cooking and eating in my own house… this eating out business is fun for a bit, but I’d much rather be eating at home.  As long as there aren’t surprises in today’s appointment, we should be home late tomorrow.  Fingers crossed!

Here are some pictures from our time in Maine… it really is so beautiful here!

Happy, happy girl

Okay... so this was from last Thursday, she was saying goodbye to Jess, her primary nurse.

Waving frantically as we waited for Daddy to bring up the van to pick us up.

Daddy is her 2nd favorite person (after Lance)... I think she likes him a little

Updated incision picture... looking beautiful

Showing off her toe touch skills

Along Marginal Way... beautiful!

Okay, yes... this is a picture of a rock.  It was so cool to see the rocky coast AND beach together.  This is one where I really could have used my DSLR, dang it.

Discharge soon & parenting thoughts

Ugh – I still can’t get over how much I hate the word discharge… sorry. 

Anyhow, Ellie had a few days where she was rocking 4 different heart rhythms… just continuously switching from one to another.  She’s silly like that.  However, in the past 24 hours, she has had normal sinus rhythm (the rhythm normal hearts beat in) and first degree heart block (where there’s a little delay in transmittance, but nothing too concerning).  As long as Ellie has another solid 24 hours, it looks like we should be able to get out of here… thinking either tomorrow or Saturday.  We can’t head home just yet, though… we’ll have to stick around to have a clinic visit early next week to check up on her before we start the 13-hour trek home.

After a few days of heavy sedation and several more days where Ellie was not yet herself, we finally got our sweet girl back yesterday.  On day 7 post-op, she regained her personality.  It takes a while to wean off of paralytics and sedatives… and I’m sure there was plenty of pain that she was trying to push through while awake.  Right now, she’s just on Tylenol as needed – which isn’t often.  She’s teething something fierce right now, too… so sometimes we give her Tylenol just for teething pain.  You’d think the massive incision and sutures in her belly would still be causing her pain, but she’s kind of a rock star.  But seriously – teeth!  It’s kind of amazing to be back to the trials of “normal” kiddos.  I remember teething being rotten for our boys… it’s kind of awesome to have some normalcy up in here.  (Did I just say “up in here”?  I’m old!)  So yeah, we’re looking forward to breaking out of here soon and taking our girl on some local adventures over the weekend before we have to come back in for an outpatient visit next week.  Fingers crossed that she doesn’t throw any of her shenanigans out at us in the next day or two.

See... she's back to her ornery, happy little self

The boys are playing hard... and crashing into nap time!

BTW, Lance and Brandon even sit the same way.

On a completely other side note, Brandon and I went out to dinner and we were talking about how much our lives have changed in the past nine-ish years.  It’s hard not to think that way… Boston is chock-full of students.  Like, really, there are at least 10 colleges in the city.  Yesterday, we sat at a random dive joint and sat next to some “kids” fresh out of college.  They weren’t quiet, so we could overhear everything in their conversation.  They sat talking about how amazing and original their weddings would be, and how they were going to raise their kids and how they were only going to feed them certain things (everything based on research, of course) and how they were going to live this amazing life that they’d always dreamed of.  Their innocence was kind of sweet… but we also had to giggle to ourselves.  Oh, life… how it’s so full of surprises.  I remember Brandon and I having the same conversations before we were married.  Uncountable curve balls later, we’re just trying to stay above water most days.  Sometimes the kids are in jammies until lunch… sometimes they eat happy meals… sometimes they have chocolate long past bedtime… sometimes we yell and react in ways that aren’t as controlled as we would hope to be.  You know – life happens and you fight like crazy to do your best.  Then there’s Ellie.  This little girl has been through the ringer and so have we, as her parents.  We’ve lost more sleep and had more breakdowns in the past nine months than we have in the last four years (and two kiddos) of parenting combined.  But you know, parenthood is kind of amazing… and by “kind of”, I mean really amazing.

Not until we had our own kids did we realize how naïve and selfish we’d been as single people or as a married, childless couple.  We had no idea how much time we really had… nor did we really appreciate a full night of sleep.  We had no idea how natural it was to always, ALWAYS put someone else’s needs ahead of your own.  Not until we had a medically complicated child did we understand deep, gut wrenching fear.  Not until we were knocked down time and time again emotionally did we develop coping mechanisms and a deep understanding of surrender and faith.  Not until we started raising a child with special needs did we truly understand empathy and compassion.  Not until we were completely unable to shoulder a burden alone were we able to accept the blessings and generosity of friends and family (even complete strangers).  Not until we had real struggles and real pain did we find that struggle and pain are universally relatable.  I’m not saying that you have to have children, (typical, complicated, or differently abled) to understand these things… these are just the things that have changed the paradigm in our family… in our relationships… in our lives. 

Do I have regrets?  Not when it comes to the kids.  I sometimes regret reacting to them (the boys) the way I do.  I don’t always keep my cool in the midst of a tantrum or downright defiance.  I’m working on that.  Do I wish we’d done things differently?  Maybe sometimes.  But mostly, I wish that it didn’t take me 27 years to stop being so selfish (that’s when I had Lance).  I wish that it didn’t take me 30 years to learn how to really empathize with others and find beauty in the simplest things… in unconventional things.  Having kids… especially since they’re all three so very different… has surely made me a better person.  They bring out a vulnerability that other people understand.  Our journey with Ellie has brought us through some of the deepest trenches we could have ever imagined… but these are relatable to others.  You might not have a medically complicated child or a child with special needs, but you may be painfully struggling with infertility or experiencing the battles of a changing family dynamic.  Our situations might not be comparable at all, but our feelings and our struggles surely unite us.

I guess what I’m trying to say is that this life we’re living is so much different than the life we thought we’d be living when we were college “kids” sitting around planning out our future.  We could have never predicted where our paths would lead… and thank God for that.  This life is more beautiful and complicated and messy and amazing than we could have ever dreamed.  We have downright awful days… yes… but we have more joy and love and fun than we ever imagined.  We also clean up more bodily fluids than we ever knew possible, too… but hey, that comes with the territory, right?

Okay – sorry for the random tangent.  Thank you for all of your thoughts and prayers as we continue to truck along this wild ride with our sweet Bug.  Thank you for reading along through my scattered thoughts.  As we prepare to wrap up our stay in Boston (praying it goes as planned) and bring home our Ellie bug with a brand new heart, we’re happy to share some pictures from our last few days here:

Music therapy... Ellie liked to feel the guitar with her piggies

Ellie loved making music with these, too.  

She ran her fingers through them and kicked them, too.

The music lady gave Ellie a maraca... coolest. toy. ever.

Jess - our primary nurse... Ellie LOVES Jess (so do we!)

 

Daddy blowing bubbles for Ellie

Daddy says it's okay to be Red Sox fans since Boston fixed my heart... 

I've never heard of a better reason to follow a team!

(Don't hate us, Balfour!)

Warning:  the next picture is of Ellie's incision and sutures... 

stop here if you're not up for that image...

I know this probably doesn't look great to you... but it's amazing to us.  She's healing beautifully!  Just below her incision are the two spots where her chest tubes used to be.  To the far left and right of her abdomen are the insertion sites of the wires to the external pacer.  Those should come out just before we leave.  I have to take these pictures so that when her scars aren't as visible when she's older, we can appreciate how much she's healed.

Pacemaker?

Ellie has been improving each and every day here in Boston.  After getting the sleep study results on Saturday, there was extensive discussion about Ellie’s airway.  She was originally set to go to the OR on Monday for a quick procedure to dilate the subglottic area, however, it was determined that she’d need a sleep study with her trach before we could really know if she’ll be able to breathe during sleep without the trach.  So they cancelled the procedure and we’ll follow up with an ENT (ear/nose/throat) doctor in Ohio once Ellie has completely healed from surgery to do another sleep study and assess where she is now before we make too many changes to the trach plan.  She has been able to be on the artificial nose through the day, though, which is awesome.  They put her back on ventilator settings through the night.  Yesterday, we were able to unhook Ellie from all of her wires and carry her around for a bit.  In fact, our nurse was so in love with Ellie that she took her out of our room to show her off to the other nurses, searching for someone who has had a bad day and “could use a cute baby to cheer them up”.  Boston has completely different sternal precautions post-op than we had in Cincinnati, so we’re actually allowed to hold Ellie up on our shoulders (her favorite way to be held).  We just can’t lift under her arms or with her arms for at least the first month. 

She's back to using her rattle like a tamborine

My phone doesn't do justice to how wonderful her coloring is.  

She's much more awake these days - she has to feel better with a new heart!

Ellie had a bedside echo done yesterday, too.  It was absolutely amazing to see a 4-chambered heart beat on that screen for the first time.  I had to take pictures… I wish I’d taken pictures of her broken little heart on the echo screen so that you could appreciate how amazing this image is. 

We were all set for a discharge on Wednesday and would need to stay in the area for a clinic follow-up here on Friday, but last night Ellie went back into complete heart block.  Little stinker.  She’s actually consistently showing four different heart rhythms – she’s just fluidly moving from one to another.  They still think this is transient, but she’s now much more likely to have a back-up pacemaker placed before we go home.  I know that placing a pacemaker is no small deal, but compared to last week’s surgery… this is nothing!  We’ll keep you posted on that.  Her pacing is really the only thing that’s keeping us here… and we have no idea when she’ll level out and what that’ll mean for additional surgeries.  Placing a pacemaker on an infant is still a procedure where they’ll need to open Ellie’s sternum, just not completely open like  it was for her last two heart surgeries.  A pacemaker in little ones is actually placed in their abdomen – not under their collar bone (like in adults).  Right now we’re just waiting to see where she settles out.

Her echo yesterday - for the first time, I saw an echo that didn't look like a hot mess!

In the stroller with almost NO equipment!  It was so much lighter this time.

For comparison, this is how we traveled last week... backpack with oxygen tank... plus humidifier in the cup holder, suction machine, emergency trach care bag, pulse oximeter hanging off the side, ventilator... enough tubing to drive a person crazy... and the regular diaper bag stuff in a backpack on Brandon.  This is why having Ellie on an artificial nose during the day would be a life changer for us!

So far Ellie has already eliminated one of her medications (sildenafil – a.k.a. Viagra).  She may also greatly reduce her dependence on Lasix (a diuretic).  She hasn’t stormed again since they started her back on propranolol (a beta blocker that she’s been on since late November for storming) on Saturday.  Yahoo!  We are really making amazing progress… just kind of holding tight to see how she does with her heart rhythm. 

We are missing our boys like crazy.  It was different when we were just 2 hours from them and could see them each weekend.  Now that we’re 13 hours from them, it feels like they’re forever away.  They are having a great time, though.  They are camping and fishing and hanging out with their friends.  They went to go visit my grandma and asked her if she was going to have a superhero party for her birthday (she turned 86 on Sunday).  Grandma got a kick out of this.  So last night, the boys went over with mom and dad and brought Grandma superhero cupcakes for her birthday.  I love this!  Such sweet little stinkers!

Bedtime stories with Nessa

Playing with a robot at Aunt Em's

4-wheeler ride with Aunt Tracy

Camping

Splashes in the pond

Fishing

Visiting Great Grandma Shuster for her birthday