7 months old (3-part catch-up post)

Our beautiful girl is now 7 months old... and home!

Home, sweet, glorious home! 

We were finally released from Cincinnati Children’s on Friday, March 20^th (our 114^th day inpatient).  I’m still so floored that a one-hour appointment turned into a stay just shy of 4 months.  We packed up our room and went to visit our friends at the Ronald McDonald House.  Oh, how I wish we’d been taking pictures all along with the friends we’ve met.  These people (families in CICU and the RMH) have changed our lives and opened our eyes to a world which is completely unknown to the rest of the world.  The RMH is full of people who are fighting for the lives of their children every day.  They’re people who know the scary reality of their situation, and yet choose to be happy about life.  They’re people who value each day more than most people because they know how precious their days are.  They’re people who rattle off medical terminology as if it’s their first language and ask blunt questions out of compassion and understanding.  They’re people who ALWAYS see the child under the veil of equipment or diagnosis.  They’re OUR people… even if we’re not sharing a kitchen or family lounge with them every day.  These people offer a reprieve from drama, grumpiness and negativity.  It’s not an easy world to live in, but at least we were in good company while we were there.  We miss these people BIG time already!

Some of our RMH family: Jack, Cassie, Tillery, Alana, Christine and Austin

Christine & Austin finally got to meet Ellie bug

 Alana and Tillery meeting Ellie

Diane was our day shift primary nurse in TCC - we love her!

Alexa was Ellie's evening primary nurse - love her, too!

Kylie was Ellie's RT (we don't have primary RTs... 

but we had Kylie a lot... and of course, we love her, too)

And Linda - she was frequently our PCA... love her so much, too!

We arrived home Friday evening and met with the nursing company, the enteral supply company (for feeding/G Tube stuff), and the vent supply company.  We had about 12 big boxes of supplies to organize, plus enough equipment to make our neighbors think we’re running some kind of janky clinic in our living room.  As we were unloading, I went to get formula ready for Ellie and realized that I wasn’t sure where her feed pump was.  After searching through all of the boxes we’d brought home, we determined that the feed pump must have been packed in the boxes from the Ronald McDonald House… which were in B’s truck… in Cincinnati.  We had both vehicles down there, but need to have 2 adults in the vehicle with Ellie at all times, so we left one vehicle behind to come home.  Brandon left the house around 8pm to drive all the way back to Cincinnati to get the feed pump.  He didn’t get back until after midnight.  I bet we don’t make that mistake again!

We were up by 5am on Saturday to prepare to meet our daytime nurse at 6am.  I was a nervous wreck.  Our nurse, Rae, showed up and we jumped right in trying to get into the swing of things.  I was stressed out, to say the least, and we had several hours where I was just in freak-out mode.  Soon after, though, we started to get to know Rae and by the end of the day, we knew that she was a great match for our family.  Praise GOD!!  Sunday afternoon we’d have lunch at Mom & Dad’s house.  We walked in to balloons, Team Ellie Bug shirts, flowers and “Welcome Home Ellie” signs.  Tears welled up in my eyes… I had no idea that this was all about Ellie.  My whole family was there… plus my grandparents.  My aunt and uncle stopped in to see us, as did Kelly, a friend who has plenty of experience with trachs and vents.  Rae came with us, of course, and got to meet my crazy family.  Denny, B’s stepdad, stopped in, too.  He was heading down to Cincinnati with B to pick up the truck.  It was a great day!

Ellie snuggling w/ Aunt Karen at the "Welcome Home" party

Kelly let Ellie try out Addison's wheelchair for size... we have some growing to do yet!

Grandma Schroer holding Ellie

Sunday evening, B found out that he was no longer employed.  Oy!  We’d been talking for a while about him possibly changing careers… he’s been really inspired by our experience with Ellie and is interested in becoming a nurse.  I’m super excited and proud of him – but the stress of being a 1-income household right now is daunting.  He starts his first step in the nursing process this fall, so things are happening fast.  I guess it’s a blessing that it’s such a production to get out of the house with Ellie right now – maybe we won’t make impromptu trips that damage our budget considerably, right?  We know that everything will be okay.  It doesn’t mean things are not stressful, it means that we have faith that we’re being taken care of.  On the plus side of this, it has been amazing having Brandon home over the last two weeks.  He’s been able to go to appointments with me and has been able to keep up on feedings and medicines and giving the boys their fair share of “me” time.  Right now we only have a daytime nurse… we’re still in the weeds trying to get the evening nurse on board and the overnight nurse rolling.  It’s all just paperwork at this point.  Bug is quite the handful… well, her equipment and meds and such more than her, really; and having Brandon home to take on the brunt of our new normal has been an unbelievable blessing.  He’s been the runner when we’ve needed groceries and such… he’s been able to help out with meals and we’ve been able to eat as a family almost every meal – this has never happened.  So, while the stress of this is almost overwhelming, it’s also been a great few weeks, really.

The boys wanted to lay on the floor with Ellie at home and watch a movie

Pancake Friday!  This was something the boys got used to at Grandma and Grandpa's house... we're trying to keep it alive at home.

Kaleb and Ellie playing on the couch.  Ellie is THRIVING at home with her brothers.

Surgical Conference:

Dr. Hirsch (who does Ellie’s heart caths) called last week to give us the results from the surgical conference.  Essentially, he didn’t tell us much at all.  He said that “no one has excluded a 2-ventricle repair, no one has excluded a 1.5-ventricle repair, and that no one has excluded a 1-ventricle repair”.  Sooooo… there isn’t a surgical decision right now.  He said they all feel like she’s doing really well right now – aside from her high end diastolic pressure.  So we talked about what we could do about that.  He said there are 2 different medications they can use to treat this so that it doesn’t get out of control.  He listed propranolol and coversyl (I think… he has an accent, so I may have this name wrong… it’s an ACE inhibitor, though).  My concern is that Ellie’s been on propranolol since early December… so I’m kind of concerned that the medications being suggested won’t work.  I’m more concerned that propranolol IS working… and that her end diastolic pressure IS being “controlled” now… and still doubling in two months.  Dr. Hirsch talked about switching Ellie from propranolol to coversyl and talking us through that transition.  My concern with that is that propranolol is the drug that is preventing her storms.  So, if we wean her off of it, are we looking head-on into storming again?  So many questions to ask yet.  Dr. Hirsch said that they would want to see Ellie back in 3-5 months for another cath.

On March 25^th, we finally got back to our cardiologist at Dayton Children’s.  Oh, how nice it was to see her sweet face!  Ellie had an echo and an EKG before we got to sit down with Dr. Luby and discuss her thoughts on our journey and her plan for Ellie’s future.  We got the vibe that Dr. Luby was not really thrilled with what had happened (surgically) in Cincinnati.  She said that the PA Band was a good thing because it stopped Ellie’s lungs from being flooded, but it was a bad thing because two things ALWAYS happen to people with complete AV Canal defects when they get banded.  One, end diastolic pressure always increases.  She explained that Ellie’s end diastolic pressure (EDP) in January was 7… a normal EDP is 3.5-4.0… so Ellie’s was already double what is should have been in January.  By March, it was four times what it should have been.  UGH!  That was never explained to us that way before.  She also said that in all of Ellie’s previous echos, her AV valve (the one, common valve she has in her heart) was tight as could be.  There was no leakage at all.  Now, it has some regurgitation.  This always happens when a PA Band is placed on a person with a complete AV Canal defect because the pressure inside the heart increases dramatically.  Soooo… now we’re seeing the repercussions of her first heart surgery – and these make us very nervous.  Ellie still looks very healthy and she seems to be thriving, but are we causing irreversible damage to her heart while we wait?  I don’t know anymore.  I asked Dr. Luby what kind of a timeline she thought we’d have for Ellie.  She first said that she was sending all of her files and tests to Boston for a second opinion – whether it’s what we were requesting or not.  Praise God… because this is exactly what we wanted her to do.  She said that she’d be looking to Boston if this was her child and she has connections at Boston and was sending Ellie’s information to them with a letter and detailed history.  We are praying that we hear back from them soon with a plan for a 2-ventricle repair.  We have another cardiology appointment this Wednesday and we’ll see if she has any feedback from Boston yet.  Dr. Luby said that a decision needs made this month and she likely needs surgery within 2 months (so… we’re now looking at 6 weeks from now).  We’ll keep you posted on this schedule as we find out more. 

Dr. Luby is also switching one of Ellie’s meds around.  When we went to Cincinnati, Ellie was on aldactone – which is a diuretic that helps her body hold on to her potassium (instead of peeing it out).  In Cinci, they took Ellie off of aldactone and instead, started adding potassium chloride (KCl) to Ellie’s feeds.  When I had asked in Cincinnati why this was done and if we’d go back on aldactone, they said that they’d rather add KCl to her feeds instead of putting her on a drug that had other possible side effects.  I got that… and that sounded good to me.  Dr. Luby said that KCl was great for a clinical setting, but she did not want us to use this at home… especially since we’ll be having several nurses throughout the day administering meds and such.  If a night nurse mistook the 8am dose for an 8pm dose and Ellie got two doses in one day, it was potentially fatal.  WHAT??  Fatal?  I said… we need to get rid of that NOW!  So Dr. Luby wrote the script to switch Ellie back to aldactone and off of KCl.  Whew.  When I hear things like this… I wonder what else we’re dealing with that is that scary that we don’t know about?  Ick.  So now we’re just waiting… waiting to hear back from Boston… waiting to see what Dr. Luby thinks this week.

Easter:

Now that we had a downer in this post, it’s time to talk about something really happy: Easter!  We had a great Easter weekend this year.  It was awesome to finally have Ellie home for a holiday with family.  On Saturday, we loaded up (with our nurse, Rae) and headed to Kettlersville to visit with my Grandma Shuster.  Grandma was so excited to see us (and especially Ellie) and held on to that little girl the whole time we were there.  Ellie was adoring Grandma, too.  After visiting Grandma, we headed north to Lima to have the Ward Easter with Brandon’s family.  As always, Aunt Kay made enough food to feed about 60 people.  Ha!  It was wonderful because we were there for lunch and dinner, so that whole food overload worked out well.  Ellie finally got to meet our family from Tennessee on Saturday and got to meet her Grandpa Ward and her new baby cousin, Zoey, too.  There was never a moment when Ellie wasn’t being snuggled.  Grandma Ward snuggled Ellie and sang her sailor song – the same song she sang to her kids and grandkids and our boys to get them to sleep.  It was adorable!  The older kids all got to participate in a massive egg hunt through Kay’s yard.  What a great time with some great people!  We arrived around 1pm and didn’t leave until about 9pm.  It was nice to have this on Saturday when we could spend so much time together.

Grandma Shuster with the kids

Grandpa Ward meeting Ellie bug

Lance hunting eggs at Aunt Kay's 

And Kaleb

On Easter Sunday, the boys awoke to eggs hidden in their room.  They excitedly ran through the house finding eggs.  After breakfast, we realized that a mystery bunny had delivered Easter baskets on the porch and hid eggs through our yard.  What a wonderful surprise!  We took the family to church and brought Rae along, too.  After a great Easter service and hugs from lots of friends, we came home for a bit before heading up to Lima again to spend time with the Maier family.  Again, Ellie wasn’t short on any cuddles and the boys spent a lot of time outside blowing bubbles with Grandma Maier.  Again, full bellies and lots of time with family.  Lastly, we drove to Anna to have Easter dinner with my family.  We spent the balance of the night visiting and laughing with my family.  My Grandma and Grandpa Schroer were there, as well.  The kids played in the bounce house and enjoyed time with their cousins.  Holidays are always so busy, but we’re so thankful that we have family to visit and an abundance of food and love.  We often take this for granted… but what a blessing this really is!  After spending Thanksgiving and Christmas in the hospital, it was awesome to finally get back into our normal holiday routine.  We'll have to get pictures from other family members for the other get-togethers... I think we were lazy on snapping pictures on Sunday.

This brings us to this week and now you’re caught up!  Yay!  I’m sorry that it took me so long to post… hopefully you enjoy all the pictures in this post, though.  Thank you for your prayers and thoughts along this journey.  Here are some additional pictures for your viewing enjoyment.  We were finally able to get professional pictures taken of the kids together.

I think I need a GIANT print of this in the living room

I absolutely love Ellie's eyes here

100% rotten!

Sweet Kaleb

And sweet Lance

Ellie's warrior pictures.  Our strong girl showing off her scars.

Ellie with her Cardiac Beads of Courage.  She earned beads for inpatient days and procedures, blood draws, dressing changes, feeding accomplishments, etc.  She is quite the warrior!

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!