Cath results and Delayed discharge

So, on Wednesday, Ellie had another heart cath.  I think this one took longer than the others, but she’s kind of a turkey, so we were prepared for that.  We had gone into this cath anxiously waiting to see if Ellie’s pulmonary vascular resistance (PVR) was finally low enough to make her eligible for her next heart surgery.  When the cardiologist came out of the cath lab, he sat us down to discuss results.  On the positive side, Ellie’s PVR is now within an acceptable range for surgery.  Celebrations!  But the cardiologist wasn’t even really coming to discuss this.  His concern now is that the end diastolic pressure (the pressure when the heart relaxes to refill with blood) in Ellie’s ventricles has doubled in the last two months.  This wasn’t even something that was on our radar to worry about with Ellie.  Dang it.  What this means is that the muscles in Ellie’s heart don’t get a chance to really rest between contractions.  It’s likely reversible at this point, but if it’s allowed to continue, it can cause her heart to harden and can cause permanent damage.  The kicker on this:  they have no idea what caused this pressure to double.  He also said there is an obstruction in Ellie’s aorta (the main artery coming out of the heart and moving blood to the body).  Punch me in the face!

He then explained how the next surgery would likely go… the Glenn procedure plus a Damus-Kaye-Stansel (D-K-S) procedure.  The Glenn would clip her superior vena cavas (the veins that bring blood back to the heart from the head and arms) and dump this blood right into Ellie’s pulmonary arteries.  The second procedure, the D-K-S, would connect Ellie’s aorta to her pulmonary arteries.  These are major heart surgeries because they totally reroute her plumbing.  They’re risky because changes in blood pressures and such can greatly impact the flow of blood into and out of her heart and lungs. 

We knew she’d need a Glenn, but didn’t know she’d need the D-K-S.  Of course, we’ll wait until Tuesday to see what they come up with at the surgical conference.  These surgeries would make Ellie’s heart a “one and a half ventricle repair”, meaning that 50% of her unoxygenated blood is rerouted straight to her lungs, but the other 50% of unoxygenated blood will still go into her heart.  She has a full, healthy, left ventricle.  The right ventricle is where the ½ comes in.  Did I lose you yet?  Sorry – this is super complicated to explain.  Once we get a plan from Cincinnati, we’ll send her files to Boston for a second opinion.  If Boston is in agreement with Cincy, then we’ll come back to Cincy for her next surgeries.  I’m guessing (I’m not a cardiothoracic surgeon, of course) that her surgeries will have to be sooner rather than later.  If the end diastolic pressure in her ventricles has doubled over the past 2 months, who knows what it’ll do in the next 2 months?  We’ll keep you posted on the surgical front.

And now we’re back to the saga of getting discharged.  We were supposed to let Ellie recover from her cath in CICU for about 24 hours, and go home from the CICU.  Brandon and I both took off work on Thursday in preparation for discharge.  Everything seemed to be in line for this to work perfectly.  However, at 10:30am (an hour and a half before the discharge time), the discharge coordinator came into our room with bad news.  The insurance company and the nursing company had not come to an agreement on wages.  Ugh!  I thought this was agreed upon a long time ago.

I made a call to my HR department to ask them how best to deal with this.  Then, Brandon made the calls (like 10 total) to the insurance company to sternly talk with our care manager and her supervisor about getting this resolved.  By 1pm, we were transferred back out of CICU into TCC because the CICU needed a bed and we no longer needed intensive care.  Finally, at 5pm, our care manager with our insurance company called us back to tell us that my employer was making concessions to bridge the gap in the wage battle between insurance and nursing.  Our care manager and her supervisor were literally working on our case all day (we’re very thankful for that).  They had to present our case in front of a board to decide if there was any way to get us home.  Honestly, it costs our insurance company more to keep us inpatient for 1 day than it costs to cover home nursing care for a month.  Seems like a no-brainer to me.  And, our insurance company and my employer are owned by the same parent company.  I feel like they’d say, “get this family home, for the love of Pete… we’re dipping into the same piggy bank here, folks”.  But that’s just me.

Long story short:  we did not go home yesterday.  We’re hoping that the fax (I know… 1980s tech here) went through to the nursing company and that all is ready for us to embark homeward today.  Last week we were waiting on a letter to arrive by mail, this week, we’re waiting on a fax.  Can we get the pony express involved here, too?  That would be amazing.  Maybe a courier pigeon or two… yeah, I like that.  So before you ask, unless you see pictures posted from home, we’re not there.  Better luck today, right?

Wrestling w/ her caterpillar back in TCC

P.S. I hate the word discharge... hate it... but when I talk about it daily, it's losing it's ickiness... good news, right?

Flashbulb memory

Today, I have a heavy heart.  On this day ten years ago, my nephew, Jared, was called to his forever home.  I think about this little man every single day.  There is so much that Ellie does (or did) that is so similar to Jared.  She’s even just a few days off the age that Jared was 10 years ago.  Every year on March 12^th, I wake up and everything about that day in 2005 is palpably real.  I remember hearing my cell phone ring from the other room and missing the call.  I remember getting up and calling Tracy back.  I remember the odd things that she said that made no sense and knowing something was wrong.  I remember calling my parents and siblings and repeating the odd words she said to them as we rushed to the hospital to meet the squad.  I remember the ER staff bringing our family into this tiny room in the back as we arrived – not a good thing at all.  [To this day, when a doctor brings us into a small room to talk while Ellie is in a procedure, my stomach turns and I panic.]  I remember hearing the most unimaginably awful words come out of Tracy’s mouth when she came in that room to share that Jared didn’t make it.  If you’re familiar with the term “flashbulb memory”, this entire day is just that.  Every detail is as vivid as if it were happening today.  I know how this feels as an aunt… I can’t imagine what it felt like as parents or grandparents.  

We release balloons every year on Jared’s birthday (sending them up to heaven for him).  While his birthday is painful, it’s still a celebration of life.  This day, on the other hand, is gut wrenching (though the pain will never be as poisonous as it was in 2005).  We still remember him with wonderful thoughts, but the reality of the day is just… just… I don’t even have words.  The pain will never go away – and it SHOULDN’T.  Our hearts will never be complete – and they SHOULDN’T be.  I’m no longer angry – but that took years to overcome.  Again, I experienced this as an aunt… not as a parent… and that difference is immeasurable.  Our loving memories of Jared live on.  We love to talk about him.  We never forget that he was here and part of our family… that’s just ridiculous.  We move forward with the knowledge that we will see him again and that he’s in a wonderful place free of pain and struggle… watching over the entire family.

Living in the Ronald McDonald House has been awesome and horrible all at the same time.  There is a lamp in the mediation room that is on for 24-hours each time a resident child passes.  It’s been lit six times since we’ve been here… four times for families we know.  Each time I see that light, my heart breaks for a family.  Each time, my mind flashes back to March 12, 2005 and I remember the shock, the horror, the panic and the unsurmountable grief.  So today, while we celebrate the happy milestones in our lives, please take time out to pray for Tracy and Josh and the whole family on the anniversary of the worst day of their lives.  Pray for the families that the RMH lamp represents.  Pray for the Meyer family in Botkins who suddenly lost their sweet girl yesterday.  Pray for the families who are not going home from the hospital anytime soon.  Give praises for the blessings in your life – large and small.  Remember those you have lost in your life, and hug the ones you have here now.  God bless you all today (and always).  We love you dearly and we celebrate and grieve with you today.  It is a good day.  

And because they are just too precious not to share... here are a few pics of Jared with his older siblings.  Love you and miss you every day, Tiny!

Mason, Georgia, Makayla and Jared - he was only 8 days old here

Christmas time for the Platfoot crew - Jared is 3 months old here

Quarantine

We knew at some point that sickness would strike.  After all, we've now been living in a huge building full of sick people for 103 days.  I'm surprised we lasted this long.

Last Monday (3/2), Ellie started getting sick with her feeds.  It was soon followed by loose stool - which made her poor bottom VERY sore.  She got to the point where she needed a diaper change at least every hour... and was still getting sick.  By the end of the week, they had decided to hold her feeds, get an IV in and just run continuous IV fluids to give her bowels a rest and to keep her from getting further dehydrated.  Getting an IV into this kid is a whole other battle and long story, but that's what they needed to do.  On Friday morning, Ellie looked like a wreck and looking into her eyes made me sad.  You know how kids just look so pitiful when they're sick??  When all was said and done, Ellie had viral gastroenteritis (a GI bug), pink eye, and an upper respiratory infection.  Fantastic.  Friday night, our boys were down here, but knowing we couldn't expose them to all that Ellie had, we brought them straight over to the Ronald McDonald House for the weekend.  Saturday morning, I woke up with a scratchy throat and I realized that I'd left all of our bathroom stuff in Ellie's room, so I loaded up the boys (B was at work) and we wore masks to pop into Ellie's room quick.  They were excited to see her - but I made sure the visit was quick and we all wore masks to try to keep from spreading this yuck.

With such frequent diaper changes, leg warmers were a much better 

choice than pants for Ellie.  Flashback to the 80's anyone??

We then headed north to attend our friends', the Skinners, vow renewal.  The ceremony and reception were so much fun.  Before heading home that night, we stopped by my parents' house to celebrate my brother's birthday.  By the end of the night, we were completely spent.  I went to bed with a nasty headache and woke up stuffy with a VERY sore throat and almost no voice.  Whatever I thought was just a scratchy throat before was clearly something more disgusting.  I called Ellie's nurse to check up on her and told her that I was not feeling well and I wasn't sure if I should to come by to see Ellie or not.  The nurse practitioner called back later in the day to give another update and told me to stay away if I could.  I might have the same thing that Ellie has, but if I didn't, I'd risk giving her one more thing to battle if I went over to cuddle her.  The nurses she has are spending extra time with her and making sure Ellie gets lots of cuddles and such, but it is killing me knowing that she's not feeling the greatest, and I'm not able to go hold her.  Brandon went over and hung out with her yesterday and brought back a video of her smiles and such.  She looks like she's feeling better, for sure.  For now, I'm going to give myself a few more hours away and try to rest up some.  I know that the worst thing I could do would be giving her something new to fight while she's just coming back from sickness.  Ugh!

The boys were excited to take a shower.  After Kaleb pooped in the tub last week, I think the shower is going to be our go-to moving forward.  Geesh!

Dancing (and laughing at Lance's dance moves) at the vow renewal. 

Thank you or the pics, Doug Fosnight!

Daddy & Kaleb

I promise Lance was here, too.  If you know that kid, though... he's never in one place for more than half a second.  So getting a picture of him was impossible.

Mommy & Kaleb eating dinner

On the home front... or the "going home" front, rather...  we were able to find a local company who has nurses available.  They aren't covered by our insurance, but I guess they were able to file an exception or something (wish I had known that was an option before).  So our case was finally submitted to our private insurance last week... the day after I posted about our nursing saga.  That's a big step in the right direction!  Now we have to wait for them to come back with a decision on hours.  This process can take a while... but we hope to hear back early this week so that we can get home this week with our Bug.  My three-year-old nephew asked me on Saturday, "Jackie, did you bring your baby here?".  I had to think... I'm pretty sure Noah hasn't seen Ellie since early November.  Gosh!  Plus, Saturday is B's birthday... it'd be nice to be able to celebrate that at our house, right?

Enjoying movies on Sunday night with the boys

He might need a haircut soon...

Thank you all so much for following along and sending your prayers for healing and home.  We love and appreciate all of you and all of your thoughts and prayers.  I hope to send pictures from home VERY soon!

6 months – A3.35

When Ellie turned 5 months old, I was so hopeful that I'd be able to write her 6-month post from home.  Not so.  We are still in Cincinnati Children’s – and to be honest, I’m not sure when we’ll be home.  This is why I titled this post with her age and room number again, dang it.  [As a fun tidbit, this is our 10th room at CCHMC.  We've had: 2 rooms in Cardiac Step-down, 4 rooms in CICU, 1 room in PICU, and 3 rooms in TCC during this stay.]

All three kiddos - adoring each other

When the attending pulmonologist saw this picture today, she said, 

"Oh my, you have your hands full."  I said, "Wonderfully so!"

Last week I was seriously bummed, and that’s an understatement.  When we came down to the Transitional Care Center in mid-January, I sat down with the education coordinator and laid out a schedule.  We plotted out all of our trainings and hurdles we had to jump through and set Feb 26/27 as possible discharge dates.  I circled those babies on my calendar and was so looking forward to getting home in February.  Brandon and I pushed hard to get through all of the paperwork, all of the financial hoops, the countless meetings and phone calls, the exhausting list of training tasks (all of which had to be done 3 times by each of us), all while trying to keep our heads above water at work and keep some sort of “normal” family life.  Needless to say, the past few months have been stressful.  We’ve been working to secure home nursing for over 6 weeks now… and on Friday I got a phone call that exceeded my tolerance for frustration.  A rep from the nursing company called me and said that yes, they had secured the 40 hours of nursing through the night (with a nurse that was referred to us by friends), but they were not comfortable sending us home with only 40 hours per week of help.  We needed to secure at least 56 hours of home nursing for them to accept our case – but of course, they have no staff to help fill the other 16 hours – so they are declining our case.  So either we need to find a home health nurse that can fill at least 16 hours, or we lose the nurse committing to 40 hours/ week.  I was so frustrated that the tension built up to my eyes, then spilled over and ran down my face… for hours.

To give you a little background on this nursing struggle – we’ve literally been working on this for over 6 weeks and this is the latest in the dead ends we’ve met.  It's not as simple as having someone who is a nurse stop over as needed.  We have to have a nurse who is trained in pediatric trachs and vents and who is liscenced to be a home health nurse (either with a company or independently).  When we first started searching, our insurance company sent the discharge planner 25 pages of nursing companies within 40 miles of our home.  Each page had 5 or 6 companies listed.  Of those companies, 2… yes, TWO covered pediatric vents.  Over 135 companies to choose from (and call) and only 2 would be willing to work with us because they had the capacity to cover pediatric vents.  Neither of those 2 companies have staff available, though.  Nice!  We received a referral from a friend for a nurse who seems like she’ll be great for our family (huge relief).  And another referral, but that nurse already has a full-time case.  So we had one person.  That one person applied with one of the two companies within 40 miles that our insurance covered.  Two weeks ago, that company’s rep called me and said, “My supervisor said we do not work with your insurance network”.  Awesome - after 4 weeks of work on that!  We found out that the referred nurse actually already works for a company within our network, they just didn’t show up in the list sent by our insurance because the company is 40.5 miles from us.  Really?  So for a week and a half, we’d been pursuing that company, making sure that our nurse would be ready to roll upon discharge.  And then I got the call Friday that they were declining our case.  That’s when the tears were flowing!!

I needed these smiles on Tuesday - a rough day for me, spiritually.

The discharge planner said that in seven years of doing her job, she’s never had a company come back and refuse the case for only having 40 hours of coverage.  Ugh!  Now, we can secure additional nursing hours from another company and have them pair with the other so that we have at least 56 hours before we go home… but that again brings us back to the fact that no companies within our network have staff.  So, yeah – sucktastic!  We have a few independent providers that are interested, but until we exhaust the 60 days that our insurance will cover for nursing care, I don’t think we’ll be able to use those ladies.  Yadda, yadda, yadda… this is the glorious mess that we’re in and why I keep posting about nursing.  Yuck.

On to happier things, though: We were singing praises to God this week.  Ellie had a PICC line that went into her vein in her right calf and the end of the line was in the top right side of her heart.  On Tuesday night and Wednesday morning, the PICC line was a little harder to flush than normal.  During rounds, the team asked if I was okay if they pulled the line.  I agreed, knowing that pulling it would be one less infection risk and we hadn't been using the line for labs regularly like we used to.  Shortly after rounds, our nurse pulled the PICC line out and located a 2 cm clot in the line... about 1 cm from the heart-end of the line.  One more flush of that line and a clot would have been released into Ellie's heart.  When things like this happen, I have to see how amazing God's timing is.  Even when I'm frustrated with earthly timing of things... I have to trust His... He did NOT fail us on this one, that's for sure!

Our boys came down to hang out with us on Monday and Tuesday.  Mom & Dad dropped them off Monday after I was off work and they stayed Monday night, hung out with Brandon during the day Tuesday, and we went on adventures with them once I was off work.  It’s amazing how those tiny arms wrapped around your neck can make everything else just disappear.  It’s amazing how you can snuggle them close to you and nap in the middle of the day without a worry on your mind.  We hadn’t seen our boys in 22 days (they’d been on vacation for a while).  I’m sure that my meltdown on Friday had a little to do with this, as well.  My eyes welled up with tears as those little turkeys spotted me in the corridor at the hospital and came running to jump into my arms.  Oh, how I miss them every day.  They were so excited to see Ellie – as she was equally excited to see them.  We took them out to dinner on Monday and snuggled with them in the Ronald McDonald House.  On Tuesday afternoon, we took them to the Cincinnati Children’s Museum for a bit.  Since we’re supposed to have another snow-pocalypse today, Brandon headed back home with the boys last night so that they didn’t have to trek through nasty weather today.

The boys like to pet Ellie like she's a dog.  It's weird, but adorable!

Ellie was taking a nap with me on the therapy mat.

The boys were coloring pictures for Ellie.  Then covered everyone in stickers.

This is why I'm thankful that Brandon had Tuesday off work.  Not only did we get to do things earlier as a family, he got some much-needed snuggle time with the boys.  This makes me melt.

This week, I was planning on getting photos taken of the kids and I planned to meet with our tax guy to get our 2014 taxes taken care of.  Of course, those things aren’t happening because we're not home.  Today, we are officially 2 weeks out from her next heart cath… praying that we get to spend at least a week at home before coming back for that.  We’ll see. 

Ellie had a great week last week.  She had 8 straight days without storms – a new record for her.  On Monday night (while we were at the RMH with the boys) Ellie had a very low blood pressure, so they held her dose of propranolol (the beta blocker that prevents her from storming).  Of course, holding the preventative drug opens the door for storming, so Ellie had a storm early Tuesday morning – breaking her streak.  I’m not terribly concerned about that.  When they told me they held that dose… I said, “and when did she storm, then?”  At least we know that the propranolol is still doing its job nicely and that it’s still needed.  I know that stressful situations will bring on more storming episodes, so we just need to be prepared for that in the future. 

As we head into this next cath, the cardiology team has said that they’ll do the cath on Wednesday, March 18^th and she’ll be presented at surgical conference on the following Tuesday again.  We are in agreement that if they again feel like the only option for Ellie is a 1-ventricle repair, we will be getting a second opinion in Boston.  I don’t know if Ellie will be eligible for Boston’s program, but they have a new program where they are taking 1-ventricle kiddos and making them 2-ventricle repairs.  The difference between the two repairs means a whole different life expectancy for Ellie… a whole different cardiac future for her.  Again, I don’t know if she’d be eligible for their program… and I don’t know that Cincinnati will come back and say she’s still a 1-ventricle repair, but I have to exhaust all avenues to give her the best shot.  Do I want to go to Boston for treatment?  Absolutely not.  Will I go if they have a program that may give Ellie a better quality of life?  You bet! 

I’m trying not to think that far ahead right now, though.  I’m trying to focus on what I can do and who I can call to move ahead on this going home business.  Oh, how I want to be home.  I’m sitting here listening to her feed pump and ventilator run behind me (she’s napping)… sitting at this tiny corner desk that I work from every day.  Oh, what I’d give to be sitting and listening to her feed pump and ventilator running while also hearing her brothers playing superheroes from their room?  Oh, what I would give to watch them interact with her on a daily basis.  Oh, what I would give to have the whole family under one roof… or cook a meal in my little kitchen… or sit at our own table for a meal together… or just snuggle up on the couch and watch a movie as a family.  I just want “normal”.  This is day 98 for this hospital stay… day 119 of Ellie’s hospital stays since birth.  She’s only been alive for 182 days… so 65% of her life has been spent in the hospital.  Her brothers think that this is where Ellie lives.  So ready to change that!!  I can't compain about this too much, though.  There are families here who have NEVER been home with thier babies... and families here who have gone home after losing their babies.  We're incredibly blessed to be in the position we're in.  We’re taking this a day at a time right now, but getting pretty impatient knowing that she’s medically cleared for discharge, but waiting on the home care stars to align.  Sitting.  Waiting.  Praying.

Planning for home

It never seemed like this day would come… when I could write a post about the real possibility of going home.  Now, this is a dangerous topic for those who know all too well how discharge planning goes.  This is no fault of the discharge planner, of course… there are just so many variables to getting home in some cases.  In ours, it’s that we have to finalize home nursing before we can leave.  We have to have at least one shift covered before they can reasonably send us on our way.  To date, this is not settled.  We have a nurse lined up and we have a company ready to roll, but that company has to verify that our nurse meets the qualifications needed for the job and our nurse has to complete some training and such before officially being assigned our case.  Once we officially have someone assigned to our case, the nursing company can finally submit the case to insurance for pre-certification.  And once we’re finally through that hoop, insurance will review the case and come back to say how many hours they will cover.  Sooo… the likelihood of all that happening before we’re supposed to go home on Thursday is pretty slim, but we’re holding out hope, of course.

Home is still a little scary for us.  As of 3pm yesterday, we were officially be done with our training – yahoo!  We’ll be meeting with the medical supply company for training on the equipment they’re sending us home with, but that shouldn’t be too strenuous.  We are sure ready to get this sweet girl home and start that next chapter in our family.  Going home is going to be much different this time, though.  Getting out of the house with all of Ellie’s stuff is quite a production – but it’s doable.  We certainly do not want to make her a hermit, but we also have to be reasonable with what is safe for her.  You see, if Brandon or I or our boys catch a cold, we bum around the house for a few days, maybe get some medicine, and we’re fine after some R&R.  If Ellie catches a cold (or gasp, the flu), we’re back in the hospital until she’s better.  What’s more, if we get close to a surgery date and Ellie gets sick, surgery is postponed for 4-6 weeks.  Eeek.  That sucks.

This was us getting Ellie portable on her vent earlier.  This is a sit & stand stroller.  The basket underneath is full, too.  As you can see, there's a lot that comes with Ellie when she moves.

So don’t be surprised if you see us and we have a plastic weather cover over Ellie’s car seat.  We have to protect her from as many coughs and sneezes as possible.  Yes, she may look like a baby in a bubble, but we don’t really have options, as far as that goes.  We won’t take her out as much as we did before, but we do want to go to church occasionally and by golly, it’d be amazing if we could see family on Easter (since Thanksgiving and Christmas were both spent in the hospital).  But know that we will still have to be extra cautious with her.  We will ask that you do not touch Ellie without clean hands… and that means we’ll always have hand sanitizer ready (and we may force it on you… sorry).  If you come to our house (we’d love to have visitors), we’ll ask that shoes come off at the door and that hand sanitizer is used immediately.  If you bring someone to our house that is sick, we may ask you to leave.  This is nothing against you… back to the whole Ellie getting sick and being admitted thing.  If you WERE sick a few days ago but are healthy now, or if someone else in your house is sick, we may just have you wear a mask in our house.  Please don’t be offended by this.  And trust us, we have LOTS of masks.  If you come to our house and see one of us in a mask… it’s probably because we feel a little under the weather ourselves. 

We will likely be more cautious of kiddos around Ellie than we were in the past.  Even if they’re not sick, they are constantly exposed to other sick kids every day.  We can’t do anything about her being exposed to her brothers, but from having kids, we know what kids’ hand hygiene looks like most of the time.  Don’t get it twisted, we squirt our own boys with hand sanitizer all the time now (they call it sanzi-tizer).  And if they get a little raspy, you can bet your but t that they’ll be masked in our house, too.  So don’t be surprised if we’re a little more reserved about kids holding or touching Ellie – we may have them wash their hands and then douse them with hand sanitizer, too.

We absolutely cannot bring Ellie into a place where other people are smoking – so if anyone smokes in your house, please know that we simply cannot go into that house with her.  We’re not judging anyone’s decision here; we’ve just been told that she absolutely cannot be exposed to second-hand smoke.  Smoking also reminds me that we will have oxygen in our house now.  We’ve never let anyone smoke in our house, but now we will not be able to have any open flames at all – so our space heater is being evicted and our candles will just collect dust for a while. 

One of my biggest obstacles will be staying on top of things being sterilized daily.  I know for some of you this is just your standard process.  Well, it’s not for me.  I’ve never been a germaphobe before and we do not use Lysol in our house.  We have cleaners, of course, but they’re natural and mild.  I was not going to have harsh chemicals in my house before.  Now, it’s a toss-up between using Lysol and accepting the possible side effects, or risking exposure to something funky because our “green” cleaners weren’t as potent as we needed them to be.  In this case, Lysol wins for us.  But it’s a change of pace for me to wipe down our bathroom and doorknobs and other surfaces with Lysol daily.  It’s a change to steam mop all of the floors daily.  I’m the kind of dork who went onto Pinterest to find cleaning tips to make this transition a little easier – don’t judge me… there are days when I spend entirely too much time on the internet.  On the other hand, a consistently clean house is kind of exciting.  For the neat freaks out there, you have no idea how panicked you become when your house is far from perfect and someone pulls in your driveway.  Ha!  Here’s hoping I do not feel that way again.

Long story short:  we hope to get home on Thursday this week.  If nursing doesn’t get squared away, it’ll be later.  Did I already tell you that Ellie’s next heart cath is March 18^th?  I’m hoping to get home for a few weeks before then.  When you come to our house or see us out, we’ll be crazy germaphobes and we’ll likely have our baby in a bubble.  But, this is our life right now and we’re just trying to do what’s in Ellie’s best interest here… I hope that does not offend you. 

Thank you again for your endless support.  We are so excited to start this new journey with our family… and it’s crazy that going home qualifies as a journey for us.  Whoda thunk, right?  Here are more recent pictures for your enjoyment.  There aren't any of the boys because we haven't been able to have them down here while we've crammed training into our last few weekends (and yes, that's killing us).

This picture shows you just how big Ellie is getting... 

and how much better her head control is these days.

Smiles for Daddy during his 24-hour stay (a test we each had to pass this past weekend showing that we could administer all meds, take care of all feedings and alarms and care for 24 hours by ourselves - we passed!)

Since Ellie has an open airway at all times, she's allowed to sleep on her belly.  This is her favorite way to sleep.  How funny, right?  It's a good thing her airway is open because those cheeks would surely cut off airflow when she's face down like this.

Nom nom fingers

We ordered Tubie Whoobies (a brand of G Tube pads) for Ellie - I just love them!

4 Part Update (because I'm slacking here)

Quick Update

Okay – I fail… it’s been 15 days since my last post… I’m sorry.  On the plus side, you can always think, “no news is good news”, right?  But now I have a lot to catch you up on, so let me unload a bit here.

First, I know I said it my last post that I was so thankful for January to be over because it was a crazy busy month.  I’m not sure why I thought February would be any different.  My work load has been better, but training and discharge planning are making us a little batty here.  We are thhiiissss close to finishing up our training.  Brandon has to do one more trach change (tomorrow) and we each need to do our 24-hour stay with Ellie.  In the 24-hour stay, we each have to be one-on-one with Ellie and do all of her trach care, G tube care, medications, feeds, etc.  You know… normal stuff you do to take care of your kid at home.  We’re allowed to use the nurses if we have an emergency, but that’s essentially like we’re home and have to call 9-1-1.  So, let’s not do that.

I had no idea that when you have a kid on a ventilator, you have to jump through so many hoops.  Your utility companies have to be alerted (because you only have 6 hours of battery life, so you can’t go long without power).  This also means we’ll be getting a generator – because we live in Ohio and we’ve had times when we’ve been out of power for days at a time.  Our emergency crews have to be alerted and will likely come out to meet us and get to know Ellie’s situation and where she usually stays in the house.  We’ve also been told that in the case of an emergency, WE are the trach experts.  The EMTs that respond will not work with her trach, which is fine… but good to know.  If Ellie ever has an instance where her trach won’t go in (which is a very real possibility), we’ll be calling 9-1-1 and riding along with her to take care of anything trach-related.  We know how to do CPR (which we both knew before), we know how to breathe for her with a bag, how to change out the trach in an emergency, and how to trouble shoot the ventilator (among other things, of course).  I don’t even know how many CPR dummies I’ve bagged in my years training others in CPR… using a medi bag (or bag valve) is so much different on a real person.  I hear that it’s also very different on a person who is breathing than one who is not… I never want to experience the later. 

Ellie has decannulated once (where her trach has come out and we had to put it back in on the fly), and we handled that alright.  She makes a horrible, wheezing sound when her trach is out – a sound unlike anything else – so at least we know that and can recognize it in the future.  I have to say that the worst thing I’ve had to do so far is reinserting her G tube.  When I popped her G tube out, I almost passed out.  And I feel like I’ve become numb to a lot of things that would have made me queasy in the past.  The g tube coming out seemed like something that would be terribly painful (there is a small balloon on the backside of the tube to keep it in her stomach, so I pulled an inflated balloon through a tiny hole in her skin – ick).  Ellie didn’t mind so much, but of all things I’ve seen here, that one about had me on the floor.  Let’s hope I don’t have to do that again, either… but I do know how to replace it if needed.

So… this going home business.  We’re supposed to be discharged next Thursday (2/26), but in order to go home, we have to have at least some nursing care arranged.  This has been a circus, to say the least, and a roller coaster with insurance and nursing companies and supply companies.  I think we’re moving in a good direction now, though, and I hope we’re able to keep our discharge date next week.  We’ll see.  I’ll make a post later about going home because there is so much that is different about this stint at home than we were used to at home before.

We’ll be back in Cincinnati in March for another heart cath (3/18), so we’ll only be home for about 2 weeks before we come back for that.  From there, the surgical plan will be in the works.  We’ll have more updates on that when we’re past the next cath. 

Bowling Benefit:

I feel like this deserves its own post, but it’s now been 10 days since the Bowling Benefit and I haven’t posted about it yet… so here goes.  On Sunday, February 8^th, there was a bowling benefit for Ellie at Westgate Lanes in Lima.  This was another instance where we were completely overwhelmed by the outpouring of love for our family.  The Lima area is not typically my stomping grounds, so I had no idea what to expect.  We walked into the alley and half of the crowd was donning Team Ellie Bug shirts.  A whole sea of blue again!  There were faces that I didn’t recognize that came out to support our bug – amazing!  There were faces that I hadn’t seen in a long time there, too, which warmed my heart.  My mother-in-law and Brandon’s aunt Sue planned this event and they did an amazing job.  There were so many other family members and friends who jumped in to help keep the event going all day.  There were 27 gift baskets filled with goodies up for raffle.  There was a 50/50 drawing for cash.  There was pizza, pop, cupcakes and of course, bowling.  I think everyone had a great time!  There was a prayer quilt for Ellie that was getting prayers tied into it during the event.  The local news showed up to interview Brandon and ran a story on Ellie on the evening news. 

About halfway through the day, we were pulled out to the welcome table because there was someone there to see us.  A group from the Western Ohio Down Syndrome Association stopped by after seeing an article in the paper about the benefit.  The one family brought their daughter, Kara, with them.  Kara is a beautiful 19-year-old girl who has Down syndrome.  She is a senior in high school this year and cheered for Perry High School for 3 years (a girl after my own heart, for sure).  She is graduating this year and wants to be a fashion designer.  She showed me her designs and shared her hugs and smiles with us.  Kara brought me to tears.  She’s a strong girl; independent, loving and warm.  Kara is driven and excited about all the opportunities ahead of her.  I just wanted to hug her forever.  I hope that Ellie grows up to be as full of life and hope and promise as Kara has.  Her dad said that they always have to give Kara challenges.  “If she’s not challenged, she’s not going to grow and we’re not doing what we need to do for her” he said.  He said he has three goals for her right now.  1 – graduate high school this year, 2 – get her driver’s license, 3 – get married so someone else can help take care of her.  Ha!  At this, Kara gave him a jab and said, “Daaadddd”.  You could just feel the love pouring out of the hearts of the people who came up to meet us and welcome us into their world.  It’s a different world, for sure, but a world full of more hope and promise than ever before. 

In total, 125 people attended the bowling event and raised over $3,400 for Team Ellie Bug.  Three generations of family were helping out during the event as well as countless friends.  I know there were people who worked behind the scenes on this and people who took the reins and made it happen.  I am thankful for each and every one of you.  I’m thankful for the businesses who donated prizes to be raffled in the beautiful baskets.  I’m thankful for each person who bowled, or sent donations, or bought cupcakes or shirts or raffle tickets.  At the end of the day, I think I only bowled 2 or 3 frames… but I spent the day giving hugs and sharing Ellie’s story and talking to people we hadn’t seen in a long time.  We felt the love from Team Ellie Bug, that’s for sure.

 Karen, Noah and Jake

 Teresa picking which baskets to put her tickets in

The Shuters representing Team Ellie Bug

The Daleys representing Team Ellie Bug 

Keykob and Mookie

These ladies were busy all day - Thank you!!

Grandma Ward helping with the basket raffle

The group from the Western Ohio Down Syndrome Association.  Kara is up front :)

The Beech family (Andrew was helping with raffles)

Check-in table... the Beech family and Braun family arriving

Signing the prayer quilt for Ellie

The kids were so happy to help with the raffle drawings

There were literally 130+ photos from this event, and I can't post them all here.  Sheryl Maier (my mother-in-law) has an album full of pictures on FB from this event.  

After bowling, we went out to eat with Sheryl and Denny, plus Brandon’s 2 aunts, his cousin and her friend.  It was nice to relax and bond with family that we didn’t get to see at all this holiday season.  We hope to be able to spend Easter with them… but we’ll see… after all, it’s Ellie’s world, we’re just taking up space in it right now.

CHD & Tubie Awareness

Last week was the awareness week for Congenital Heart Defects and Feeding Tubes… both things that are very much a part of Ellie’s world.  If you didn’t see what I posted on FB about these, check that out.  Just a few quick facts to enlighten your world:

“There are more than half a million people in the United States who have a feeding tube.  About a hundred thousand of those are children.” – Feeding Tube Awareness Foundation

In Ellie’s case, her feeding tube has saved her life.  If not for the tube, or tubes in her case, Ellie would not be able to take in the calories she needs to support her heart and lungs (that consume a ton of calories) as well as the rest of her body.  When Ellie’s been in heart failure, her body was struggling just to keep her awake some days.  She didn’t have enough energy to try to eat.  To this day, even with all the extra energy that Ellie gets (thanks to her tube), she gets exhausted very quickly.  When she eats by mouth, she is only able to eat 3-5mL at a time (less than a teaspoon).  Until I was the proud parent of a tubie, I had no idea that feeding could be a challenge… that taking food by mouth wouldn’t be an option for several months.  I was just concerned that my kids would someday be picky eaters.  I had no idea this other world existed where you get excited about the idea that maybe your child will eventually take a little food by mouth, ANY food by mouth – something that is so normal and social and part of family life.  Until your reality is different, you never know how common these issues are.  This is why it’s important to raise awareness.

Just to give you an idea of how critical feeding tubes have been for Ellie

And did you know that congenital heart defects are among the most common birth defects in the U.S.?  It’s true.  They can range from heart murmurs to very critical defects that require immediate open heart surgery on the tiniest of bodies.  There is a campaign to add pulse oximeter testing to all newborns.  This is an inexpensive, very fast test that can tell (without the obvious signs) if a baby is not oxygenating well.  It takes less than a minute.  This can help diagnose critical heart defects that were not seen on prenatal ultrasounds.  Pulse oximeters are non-invasive… Ellie wears a pulse ox 24/7 and will continue to wear one for a few years, likely.  So simple… so life-saving.  Be aware! 

Ellie’s heart defect was seen on our 18-week ultrasound.  Our obstetrician thought she had some sort of ASD (atrial septum defect), a hole between the top two chambers of her heart.  Once we were examined with a fetal echocardiogram, Ellie was diagnosed with a complete A-V Canal Defect, which means she’s missing most of the septum of her heart (making her heart 1 big chamber instead of 4) and she has just 1 valve instead of 2.  As if that wasn’t enough to rock our world, we found out in November that the right side of Ellie’s heart is entirely too small to function even if she had surgery to repair her septum.  This is called hypoplastic right heart and is a very serious defect which will result in Ellie having multiple surgeries to bypass the right side of her heart completely so that her heart works as 1 ventricle instead of 2.  Medical mumbo jumbo, I know.  But the more people know about these things, the better. 

There is nothing we did wrong to cause Ellie’s heart defects, and nothing we could have done to prevent them.  Essentially, when Ellie was about the size of a sesame seed, her heart was supposed to divide into 4 chambers and start to beat.  It skipped that first step and developed all crazy-like on its own.  It beats like a little champ, but is all kinds of busted up… I say that in the most loving way possible.  J  Thank God for good medical care and amazing (non-invasive) prenatal testing.  We welcomed Ellie into our world knowing she’d have a hard road ahead of her… but willing to dive in and give her the best treatment we could find.  Ellie’s trach and g tube were essential because of her heart defect, really.  But by golly, every stinkin’ day in this place is worth it for the smiles on that sweet baby girl’s face. 

Ellie is showing off her scar (because tough girls have scars) for CHD 

awareness week... and wearing her pretty red tutu for Valentine's Day

Thank you all for following along.  I’m sorry it took me so long to post – I’ll try to be better moving forward.  We love you all and thank you for your prayers and constant support.

Side note

Keep checking the Team Ellie Bug Events page (posted 1/9/15).  We have 2 new events in the works right now and this is where I’ll continue to post any happenings for Team Ellie Bug.  Much love!

5 months – Go Rockets!

Miss Ellie is 5 months old today.  Brandon and I have joked for the past few months that we should be taking a monthly picture of Ellie with a sign.  Almost everyone else we know does something adorable with their baby each month to post on FB:  the t-shirts that have months on them, blocks spelling out the months, a chalkboard with the baby’s age and likes/dislikes… sweet things like that.  We thought that we should take mugshots of Ellie with her hospital room number in front of her for each month.  Not funny, really – but our twisted sense of humor was satisfied.  When Ellie was a month old, she was living in Room 358 at Dayton Children’s.  At two months, she was home for a few days (whoa, right?).  At 3 months, room A6.81 at Cincinnati Children’s; 4 months, room B6.19 (CICU) in Cincinnati Children’s; and 5 months, room A3.39 in Cincinnati Children’s.  Who votes for home at 6 months?? 

All joking aside, I wanted to take this time and this post to tell you all how amazed and thankful I am for the love and support we’ve received from our communities.  We cannot begin to describe how you’ve all melted our hearts again and again.  This past weekend (on the 30^th), we were humbled beyond belief (again).  The Anna High School cheerleaders had called me several weeks ago and asked if they could do a fund raiser for Ellie and get the student body involved in the cause… all of their efforts culminating at the Anna vs. Ft. Loramie varsity basketball game on 1/30.  I agreed, of course, and was touched that these girls that I used to coach wanted to do something for our sweet bug.  I could have never prepared myself for the response that would follow.  The girls sold the Team Ellie Bug shirts… and selling they did… totaling over 300 shirts.  You have to remember that Anna is a very small community.  I graduated with 76 people in my class, so when 300 shirts are sold in a school system, that’s unbelievable!  My niece, Makayla, and her friends started a bake sale and diligently worked before and after school to sell baked goods to raise money.  I found out on Friday that the bake sale was announced during the morning and afternoon announcements broadcast to the entire school.  Village Salon and Spa (in Anna) also joined the cause and donated 10% of all sales on 1/30 to the Team Ellie Bug fund.  Donations for the Ronald McDonald House were also collected at the game.

We walked into the school and saw so many blue shirts (when our school colors and green and white).  I was instantly overwhelmed with emotion when I saw all the blue shirts.  We took the boys to the concession stand for snacks… there stood our superintendent in a Team Ellie Bug shirt.  I sat in the stands and saw the high school cheerleaders and all of the basketball players sporting shirts.  The boys warmed up in the blue shirts.  The coaches had coordinating ties.  The athletic director made special announcements giving the crowd a little background on our journey with Ellie.  So many familiar faces were wearing Ellie’s shirts in support… and so many people (mostly students) who didn’t know me at all were still standing in unity, supporting our little girl.  Talk about being overwhelmed… in the best possible way you can imagine.  Have I said enough how much I LOVE being from a small town?  How much the small town gives me hope for the rest of the world??  When I first sat through sports banquets as a coach, I was reminded of how proud I was to come from a school that still opened and closed their sports banquets in prayer.  When the girls first offered to promote Ellie’s shirts, I let them know that God is mentioned on the front of the shirts and there is scripture on the back.  Did that stop order forms from being sent home with every kid in the school system?  I’m proud – VERY PROUD – to say that order forms were delivered to each child… and over 300 shirts were purchased.  School administrators showed support… a sign bearing Ellie’s name was posted on the office doors of the elementary.  Kids from kindergarten through high school showed support and love for our baby girl.  The community came together and rallied around us.  I can’t describe this, really… it’s unthinkably awesome… and I’m still emotional thinking about it now. 

This wasn’t the end of the story, though… it was a great night for the whole community.  The varsity team pulled out a win in overtime and kept us on the edge of our seats throughout.  At halftime, the Industrial Arts team always draws a raffle for someone to attempt a 3-point shot for cash.  On Friday, that raffle winner was Isaac Bensman, a freshman at Anna who also has Down syndrome.  Isaac stood on the 3-point line and swooshed that ball right through the net.  Everyone in the stands cheered wildly for him.  What a perfect night to show everyone what can happen when a community comes together to support their own.  Isaac is a kid I’ve casually known for years and he’s instantly someone I thought of when we first got our Down syndrome diagnosis in April 2014.  I knew he was in a typical classroom with my nephews… I knew he was well rounded and loved by the entire community… I knew that he has friends and a great family… he was one of those kids I thought of and said to myself, “Ellie’s going to be okay”.  So I stood and cheered for Isaac as tears welled up in my eyes.  Victory for Anna… victory for Down syndrome… victory for faith in a small town.  Oh yeah, and at the end of the game, the cheerleaders took the floor for a chant “Did it (clap, clap) for Ellie (clap, clap)”.  Love.

This benefit for Ellie turned out so much bigger than I ever imagined… so much bigger than the current cheer coach and cheerleaders imagined, too.  Those sweet girls, along with the amazing middle school girls who sold baked goods, raised over $7,000 for Ellie.  I’m completely blown away!  And I know that it’s not just those girls.  For every parent that took time out of their busy schedules to help make baked goods for their daughter to sell… for every parent who sent their kiddos to school with a few extra dollars to buy brownies and puppy chow… for every parent that came out in a blue shirt or ordered blue shirts for your kids… for every person (parents, students, teachers alike) who took time out of their crazy schedules to pray for our family and support us in all the ways you’re supporting us… we’re endlessly grateful.  To all of the ladies (and Tony) at Village Salon who spent a busy Friday working and raising money for the fund… we thank you.  For anyone who brought donations for the Ronald McDonald House… we thank you.  We just can’t say enough how blessed you’ve all made us feel – our hearts are overflowing. 

Some pictures of #teamelliebug.  Go Rockets!!

 The high school cheerleaders after the game (with the boys and me)

The girls plus Ronnie Rocket... Kaleb wanted to dance with the rocket all night long

 Me with the 3 seniors I used to coach... I used to coach 2 other current cheerleaders, too

The boys basketball team and coaches (and fans) in Ellie Bug blue 

 This shot is really special to me.  First, the team and the cheerleaders are all wearing Team Ellie Bug shirts... but the flag in the left corner... it's the flag that the class of 2002 (yes, I'm that old) bought in memory of Jason Banks, a friend and classmate who passed away shortly after graduation.  That flag always strikes a chord in my heart.

My nephew (who is on the team and was sitting with the team and coaches) took this shot of the Ellie Bug shirts across the gym

Players and cheerleaders in blue... also, lots of blue shirts on the kids waiting to give the players fives as they're announced.  I also love that Isaac is in this picture!

My grandma Shuster supporting Team Ellie Bug.  Grandma fell a little while ago and broke her hip.  So grandma and Ellie are both going through lots of PT these days.  Nothing can take that sweet smile off her face!  I know without a doubt where Ellie gets her willpower to fight!