1st Day of Christmas: Our team (cardio & pulm)

If we were to list out all of the people who have cared for Ellie (from a medical standpoint) during her first three years, there's no way we'd be able to keep track.  She's literally had hundreds of people who have cared for her inpatient and at home.  One thing that I've learned along this journey, though, is that it truly takes a village of professionals to raise a medically complex child or a child with special needs.  In our case, we get to dip into both of those worlds.  As I was reflecting recently on how sad I was that our pulmonologist passed away, I was really disappointed that I'd never gotten a picture of him caring for Ellie.  In the countless appointments we'd had with this man, I never stopped to say, "Can I take a photo of you with her?"  Fail.  So during these 12 Days of Christmas posts, I wanted to take a bit of time to recognize the members of Ellie's team who are our core care team.  I know this list seems exhausting (that's why it'll be broken up into several posts), but we're just highlighting the folks who have spent considerable time with Ellie - enough time to really know her and to know us.  I'm going to try to incorporate as many photos as I can here.  I have so much love for these folks.  And I'm going to go by specialty here, plus highlight a few people who were part of her previous care and made significant impacts on our lives.  Here goes day #1:

Cardiology:  

1) Dr. Luby (Dr. Abdurrahman) - Dayton Children's Hospital
We met Dr. Luby when we were 22 weeks pregnant with Ellie.  She's been on our care team since May 2014.  During my first interaction with her, I knew she was the doctor for us because she explained our diagnosis, then gently placed her hand over mine, looked into my tear-filled eyes, and said, "I hope that by now someone has told you that this is not your fault.  You did nothing to cause this.  You couldn't have done anything to prevent this."  She went on to tell me how she would do her best to take care of us and our little girl.  That, she has.  When Ellie was born, the hospital had some trouble with the echo machine - it wasn't able to send files directly to cardiology at Children's.  As soon as I was out of recovery and allowed to venture down to the NICU, I was rolled into that room and saw none other than Dr. Luby performing her own echo on our 3-hour-old baby.  She was there... in a different hospital... after hours... checking on our baby.

When Ellie was little, I was in contact with Dr. Luby several times a week, and called her on weekends and evenings when anything seemed "off" about Ellie.  Dr. Luby was always quick to return my calls and thorough in her explanations.  When I saw signs of heart failure, she brought us into the office right away.  When we had different treatment options, she explained them thoroughly... then said, "option A is one option, option B is a better option, option C is the best option", but always gave us the choice.  When the presented surgical plan wasn't the absolute best plan for Ellie, Dr. Luby hit the ground running, compiling test results and records... sending them with a personalized reference to Boston.  Once our records were in Boston, she called the head of cardiology daily - I'm not kidding.  She said she'd even call him from different phone numbers and each time he'd answer and say, "Hi, Luby".  He knew that she was the only one calling him daily from that area code.  When Ellie was storming more frequently, she brought us in to check her out and reassured us that Ellie was healthy from a cardiac standpoint.  When Ellie was very sick, Dr. Luby called my cell phone on a daily basis, asking about signs of heart failure, asking how I was holding up... never letting on how concerned she really was.  We didn't hear about this until later.

On Ellie's third birthday, we got a hand written note from Dr. Luby about our "feisty Ellie".  Her care for Ellie is unmatched.  We love to see her and let her fill our room with laughter.  On days when I seem frazzled, Dr. Luby stops everything and says, "Are you okay, mom?  How are you holding up?" She also asks about others who have come to the office with us - the boys, our nurses, my sister.  She cares deeply and unlike anyone I've ever met.  We have so much love for Luby and her staff.  I could go on about her for days.  But... since she's just the first on my list of folks to recognize, I'll move on to Ellie's two cardiothoracic surgeons.

Ellie w/ Dr. Luby when Ellie was only 13 days old.

When I google her name, there are 4 photos of Ellie on the first page of image results.  Can you tell we post about Dr. Luby a lot?  We adore her.

#2) Dr. Morales - Cincinnati Children's Hospital Medical Center
We were set to meet Dr. Morales for the first time on 12/3/14.  However, because Ellie didn't recover well from anesthesia after her first sedated echo, we met him a few days earlier (the day after Thanksgiving) since we were already inpatient at Cincy.  Dr. Morales came in to describe Ellie's heart defect in more detail, informing us for the first time that her right ventricle was tiny.  We'd go on to have many tear-filled conversations with Dr. Morales in the coming month and a half.  He rocked our world when he had to break the awful news that Ellie wasn't eligible for the surgical plan that we thought she needed.  Her pressures were just too high in her pulmonary arteries to do the surgeries he'd described to us in November.  Even with a trach, Ellie wasn't able to reduce the pressures that needed to be in check for her first step in her repair.  In the end, this turned out to be the biggest blessing, but at the time, it sure didn't seem so.  To move her along and give her some time, he placed the PA band on the trunk of her pulmonary arteries on 12/31/14.  Without this surgery, nothing else would have been possible for her.  Ellie amazed Dr. Morales that day and I'll never forget shaking his hand and thanking him when she was headed to recovery.  He is a much loved man to the families we got to know in the CICU.  I cannot imagine the weight on such a surgeon.  While he didn't offer the plan we'd hoped for, he was in agreement with a whole team who had Ellie's best interest in mind.  He delivered the hard news gently, and operated on our girl when the odds were against him.  He certainly holds a very dear place in my heart... he was responsible for the surgery that limped her along and gave her a fighting chance.  He's the man who performed the surgery that protected her lungs from further damage... giving us a future off of the ventilator.

Dr. Morales - we don't have pictures with him - dang it.

#3) Dr. Baird - Boston Children's Hospital
We met Dr. Baird when Ellie was again in the depths of heart failure.  When we were discharged from Cincy and met back up with Dr. Luby in Dayton, she told us that we had about two months to get Ellie the surgery she needed.  Within a week of that two month mark, Ellie was in very bad shape.  She was rapidly growing out of the PA band that was placed five months before and spent her days with gray skin, purple lips, and fully dependent on the ventilator.  She wasn't awake much and tolerated very little.  We were desperate for a miracle when we walked into Boston for our pre-op testing day.  Dr. Baird met us and had this ease about him that was comforting.  He spoke about his plan with a comfort you'd expect from someone describing their recent golf match.  We only saw him briefly before her surgery on 5/27/15, but he spent a great deal of time talking to us after he was finished.  I wanted to wrap my arms around him and squeeze him until he could feel the gratitude in my heart that day.  That, of course, will never be possible.  In six hours, he used part of her pericardium to build a septum and her mitral and tricuspid valves.  He built the valves in her heart, y'all.  If that doesn't blow your mind... I don't know what would.  He then stopped in to see us every night before he left (after 8pm) and every morning as he came in before heading to the OR (before 7am).  He had Mt. Dew in the pockets of his lab coat.  He had an ease about him that was warm and reassuring.  He was not a man that was intimidating - even when you knew his mind was beyond fantastical!  I cannot wait for the day when we can bring Ellie to see him and let her shake his hand... maybe hand him a bottle of Mt. Dew.  I know nothing can ever express our gratitude to him, but we sure try by sending him birthday announcements and thank you letters each year.  I'm still in awe of this man.  Yet, I don't have a single picture of Ellie with him... but here is a video of him... it gives you a pretty good idea of his personality.  He specializes in valve repair (SURPRISE!).

If you have two and a half minutes, watch this video about Dr. Baird!!

We WILL get a photo with him when we get to see him again.

Pulmonology

#1) Dr. Cohn - Dayton Children's Hospital
This man is the one we've just lost from our care team.  He was someone Dr. Luby sent us over to when Ellie was sick one day.  We were in cardiac clinic and she said, "Yep, let's get her over to pulm... I have just the doctor for you".  She then walked us just down the hall (this was before all the renovations at Dayton Children's) and we met Dr. Cohn.  He was a tall man, but couldn't have been more calm and patient.  He was made for pediatrics.  When he was a child, he had an illness that required him to have a trach for a while, which was one of the biggest motivators steering him into pediatric pulmonology.  He was my go-to guy, allowing us to pull cultures at home and drop them off at the lab so that we didn't have to expose Ellie to all the hospital yuckiness during cold and flu season.  When we needed a new DME for supplies, he had just the right company for us (that'll be in another post).  When we came into clinic with a sick Buggy, he was often the one calling the floor to arrange for us to stay if we needed, or making lengthy phone calls with me talking about our options for home care to help us avoid the PICU during RSV season.  He worked closely with us through sleep studies and medication changes... battling through denials with insurance and rerouting medications we needed to make sure we had them in our hands.  In the past year and a half, we'd only seen him a handful of times because Ellie'd been relatively healthy and we could handle most things at home (with his guidance, of course).  Our last interaction with him was accidental.  We were waiting to go back to a pre-op room for surgery in July and Ellie was especially rambunctious.  I was trying to organize her things in our wagon quick when Ellie decided to bolt away from me and went running for the elevators.  As she neared them, the doors opened and she continued towards them like she was going to get on for a ride.  Dr. Cohn walked out of that open door, squatted down, and said, "good morning, Elizabeth, how are you today?  Are you trying to get away from mom?"  We weren't on his schedule... we weren't anywhere near pulm clinic.  We hadn't seen him in months, yet he saw that little monster running at him and he immediately recognized who she was and gently greeted her and kept her from boarding the elevator ahead of me.  He then greeted me and wished us luck in the OR.  That's just the kind of man he was.  He was always calm, always gentle, and was familiar with his patients even in unfamiliar encounters.  We will certainly miss him.  I don't have any photos of Ellie and Dr. Cohn together, but I do have a hospital image of him.

Our beloved Dr. Cohn

#2)  Dr. Wolf - Dayton Children's Hospital 
We had our first clinic appointment with Dr. Wolf earlier this month, but I only took a photo of how Ellie looked while she colored on the floor.  We've interacted with Dr. Wolf while inpatient many times.  During those interactions, we have been very impressed with him.  He's also very calm, but with a quirky sense of humor that I very much appreciate.  He came into Ellie's hospital room last month (after her lingual tonsils were removed) and said, "I hear we're taking this trach out today".  WHAT??  I think the excitement and surprise on my face caught him off guard.  He said, "Wait... let me talk with Elluru... he's the boss... I don't want to get your hopes up today."  So I'm looking forward to what the future holds as we work with Dr. Wolf.  In our clinic appointment last month, we had just gotten results from our trip to the ER and he saw that she had RSV.  This was the first time that Ellie's had RSV and he knew how scared I was.  Yes, Ellie is three, and yes, RSV is usually no big deal unless you're an infant.  Unless, you have a compromised immune system or respiratory issues - both of which Ellie has.  Dr. Wolf touched base with us through the week and assured us that the intensity of illness we were experiencing was what he would expect for Ellie.  He worked some magic and made sure that we had the medicines and treatments on hand to continue to battle it from home.  We look forward to working with him for as long as we need a pulmonologist :).

Dr. Wolf & Ellie coloring on the floor during her last visit with him.  He looked at her folded posture and said, "my legs would not still be functional if I sat like that".  Ha!

So there you have it - the first of my 12 Days of Christmas posts.  I'm not sure if they'll all be about medical specialists or not... we have about 50 people on our care team (that's not a joke)... but if I keep condensing these, maybe it won't take all 12 posts!  Thank you for reading along.  If you have some stellar medical professionals in your corner, thank God for them.  And make sure they know how much you love them, too.

Wrapped around those little pinkies

For any of you who have been living under a rock (when it comes to my posts) and do not already know about my obsession with Ellie’s hands… let me let you in on a few things, here.

First, Ellie’s hands are puffy – they’ve been puffy since the day she was born and I describe them like little peach pillows.  Ellie is squishy – I KNOW you’ve heard me say this.  I often describe her as pudding.  Because, honestly, she feels like a bag of pudding, folks.  She’s getting stronger as she gets older, but to squeeze on those little arms, hands, and legs… she still feels like she’s full of pudding.  There’s a delicate tenderness about her and all this squishiness stuffed into this little bitty body is just too much for me to handle.  

When Ellie was about a year old, we decided to make a craft that involved painted hand prints.  I painted and stamped the hands of the boys, then painted and stamped Ellie’s hands, too.  When I looked at the final product, I felt like I’d messed up.  I must have only painted two sections of her pinky… how in the world did I manage that?  I grabbed her little hands to repaint them and low and behold… noticed that I had not missed a thing.  It was Ellie that was missing something – the middle section of her pinkies.  WHAT?  How had I not noticed this before?  How was she almost a year old and I never noticed that her pinkies were just over half the size they should have been?  Maybe I’d been too caught up in her pillow hands that I never inspected the littlest digits.

I later discovered that this happens sometimes in kids with Down syndrome and it’s called clinodactyly – a very short pinky that often curves in towards the other digits.  Well… it kind of curves, too.  Hmmm… news to me!  I’d searched her little palms for a single palmar crease (another outward sign that’s a soft marker for Down syndrome).  She doesn’t have the single line – but I’d failed to notice those pinkies.  It’s thought that when babies with Down syndrome are developing in the womb, they tend to fold their hands at a ninety degree angle (instead of curling them in more).  This is due to low muscle tone and is thought to be the reason so many people with Down syndrome have a single palmar crease.  Ellie’s palms look exactly like mine – not one, not two, but three lines.  She must have been great at making a fist as she developed.  Maybe practicing shaking her fist at the odds of her success!  (Get it, girl!)

So in the beginning, I determined that she did not have the single line, and went about kissing those soft pillow hands for months – never noticing this cute little pinky.  Until the epic painting craft.  I also noticed that Ellie’s painted handprints looked huge.  Well, they’re not big at all… but once painted and smashed onto a page, all that squishy pudding flattens out to make a very boxy handprint.  I can’t get enough!

Ellie came home with this artwork in her backpack and I’ve been staring at it, admiring those square handprints… admiring those tiny pinky prints… and internalizing all these different little things that fill me with joy these days.  I mean, really… who gets excited about pinkies?  This girl.  That’s who!  Tiny reminders of how incredibly blessed we are to walk this weird, crooked journey as her parents.  Reminders littered through our normal days reminding us of how lucky these little boys of ours are to know in the deepest depths of their souls what compassion, hardship, and unconditional love look like.  For these things (and tiny pinkies), I’m so very thankful.

 

Her purple people eater is adorable.  Can you see the tiny pinky in the pic of her with my glasses?  Funny, right?

Side note:  I didn’t even attempt to do the 30 Days of Thanks this month.  I’d tried it in the past and failed miserably, so I wasn’t about to start and stop again.  Maybe I’ll try again another year.  It’s not that I don’t have a billion things to be thankful for… I certainly do… I just get side tracked when I have the best of intentions to post something each day for a month.  February is congenital heart defect awareness month.  Wanna know how many facts I managed to post?  Ummm… four.  Yep – and I had a short month to work with.  October is Down Syndrome Awareness month… I think I got about 5 of those 31 days, and at least three of those were just shares from someone else.  Eek – I’m terrible at this.  So instead of trying to stick with something for a whole month… I’m going to try to double my previous attempts and shoot for 12 days of Christmas (not even 12 consecutive days… just 12 days between now and Christmas where I post something).  How’s that?  You think I can keep up with that?  I don’t think I’ve made 12 blog posts all year… but why can’t I do 12 in the next month-ish?  Ha!  Today’s was even a bonus on top of those 12.  Keep me accountable, will ya?  I have a lot to be thankful for and a lot of people who have poured into our lives that I want to thank.  That’ll likely be the focus, btw, turning the spotlight on to the people who have cared for Buggy (and me) through this journey.  People who care for hundreds of kiddos each week, and do so with the intensity they’ve had in our lives.  Stay tuned!

Our elf, Luigi, hanging around.  The boys are so excited about this!

There's a house in Piqua that has more lights than the rest of the state, I swear.  We had to see it!

Took the boys ice skating on Sunday afternoon - B wasn't excited about my selfie.

I can't handle the cuteness.  We had sick kiddos last week, and again starting Sunday evening.  We're back to healthy now... whew.  No fun.  Keykob enjoyed the cuddles nonetheless.

Aunt Sherri bought Ellie a super cute sparkly shirt.  Ellie approves!

Yep, this is how we act for Thanksgiving dinner!