Hard to swallow...

Last night, our little bug was hooked up to a video EEG machine.  Around 3am, she started to have one of her fits.  I hit the alert button on the machine and talked to it (it records voice and video, btw) describing Ellie’s fit.  Someone from neurology was in our room within minutes to observe this episode.  He watched as Ellie failed about, arched her back and increased her heart rate, body temp and breathing rate.  He held her down and checked to see if she could focus.  He was able to restrain her limbs (unlike what he’d expect in a seizure) and noted that she was responsive with her eyes (again, unlike a seizure).  She did calm down for a few minutes, but once she was given her heart medicine, she started another fit.  They gave her a dose of Ativan (which is a sedative used to treat seizures and autonomic storming, alike).  Within 3 or 4 minutes, Ellie was out.  Ick – I do not like that… but it was nice to see her breathing and heart rate return to normal so quickly.  He said they’d have to assess the EEG, but was almost certain this was not a seizure.  So we talked about autonomic storming again.  I told the neurologist that when we’re at home, the only thing that consistently calms her down is laying her on our cold living room floor.  He said that made sense because in an autonomic storm, the brain sort of misfires and then ramps back up and causes the body to release adrenaline (which is why her heart races, her breaths are fast and shallow, she sweats, and her arms and legs flail).  This progresses until something resets the system (like a manual reboot on your computer).  He said that laying her on a cold surface sends the message of cold back to the brain (the same area that’s causing these episodes also regulates temperature) and this coldness sort of resets that area of the brain and calms the storm.  Hmmm… we had no idea what we were doing putting her on the floor, we just knew that it worked… but now it makes sense why it worked. 

Shortly thereafter, the cardiac team made rounds and they talked to us about the fits and a plan moving forward.  Since it looked like the EEG was ruling out seizures, the next likely explanation is that these are autonomic storms (exactly what we’d talked with neuro about).  They would need to do an MRI to confirm this.  However, for Ellie to have an MRI, she’d have to be sedated again… and with her reaction last time, they’d need to have the cardiac anesthesia team present for this.  They also let us know that she’d possibly need to hang out the in Cardiac ICU after the MRI, so they weren’t rushing this… they wanted to make sure they could schedule the right anesthesia team and such. 

Almost as soon as the cardiac team left our room, Dr. Morales (our surgeon) came in to do the surgery consult that we were supposed to do next week.  We were so excited to get to meet him… but that excitement turned to a feeling of total defeat in a matter of minutes.  He said that Ellie’s echo showed that her AV Canal defect was unbalanced.  Unbalanced to the point where her right ventricle looked inadequate to function (even after surgery).  He gave us a quick anatomy lesson and reminded us that the non-oxygenated blood from the body dumps into the right atrium from the superior vena cava (SVC), which brings blood from the head and upper body, and the inferior vena cava (IVC), which brings the blood up from everything below the heart.  In Ellie’s heart, the volume that is dumped into the right atrium will not fit into her tiny right ventricle (where the blood is held and then pumped to the lungs to pick up oxygen).  So, the solution is a different surgery than we were originally thinking.  He’d have to do what is called a Glenn Operation first, where he will disconnect the SVCs (Ellie actually has 2 of these instead of one… overachiever) and connect them directly to the pulmonary arteries (arteries that carry blood from the right ventricle to the lungs).  If Ellie does well with this, and her right ventricle can still handle the volume of blood from the IVC, then she’d be good for a few years before additional surgery would be needed.  If Ellie’s right ventricle cannot handle the volume of blood from the lower part of her body, then an additional procedure would be needed (called a Fontan Operation).  This procedure would direct the blood from the IVC to the pulmonary arteries, as well.  Essentially, Ellie’s right ventricle is useless.  These surgeries would make it so that Ellie’s heart will work as just one pump instead of two.  Her heart will only pump blood to her body, like it’s just using the left side of her heart.  Is this scary?  Terrifying!  The scariest part about this for me is that if the operations are not successful, the only other option is a heart transplant.  So… these operations HAVE TO WORK.  Below is a diagram of each procedure, if that helps you understand my mumbo jumbo here.

 

Before we can think about surgery, we have to get to the bottom of these episodes, or storms.  A storm would have catastrophic consequences on her post-surgery body.  I don’t know why we didn’t think about this before… but it was suddenly so obvious when he brought it up.  A newly mended heart simply couldn’t handle the stress that’s put on her heart and lungs during these episodes.  That is our top priority right now… to figure these out and treat them.  Priority number two is to make sure Ellie isn’t under respiratory distress and doesn’t have any airway obstruction.  We know she has this now, we know that it’s very common in kiddos with Down syndrome.  We also know that it makes the heart procedures we’re now looking at much riskier.  If there is too much pressure in her pulmonary arteries, the blood will not be able to passively flow into them (remember, blood will no longer “pump” into the lungs).  Ugh!

For now, they’re putting Ellie on a beta blocker called propranolol as a maintenance medication to prevent the autonomic storms, at least until we can get her in for an MRI sometime next week.  Dr. Morales told us to expect to be here for at least another week – maybe two so that we can get to the bottom of a few things.  They’re also going to do a heart catheter sometime early next week to get a better idea of what her pulmonary hypertension looks like.  Sooo… it’s time to get comfy.  We went home quickly today to pack up additional supplies and to visit with the boys for a while.  Then we headed back to Cincinnati to set up camp.  It’s not bad here, it’s about the size of a college dorm room.  Except this time, our roommate is a beautiful 10-pound ball of stress and the tests DO actually have an impact on real life.  This is the hardest day we’ve had, in my opinion… and so far I’ve melted into B and my dad and let the stress of it all run down my cheeks and onto their shirts.  Tomorrow is a better day, I know that.  In a weird way, I am so incredibly thankful that she did not do well with sedation on Wednesday.  If she had, we would have been sent home and we would be dealing with respiratory distress at home.  Also, these fits she’s been having (which everyone kept saying was just colic wouldn’t have been addressed.  Like I said earlier, not addressing these would be catastrophic post-op).  So, pray for our baby, please… this is a harder road than we originally thought we’d be traveling… and the first road wasn’t all that much fun.  We’re hanging in there, though… we know that God’s got this and He has a plan for our little bug.

Thank you for your prayers and for following along with our story.

Hospital turkey...

So Brandon and I joked the last time we were admitted that we should have a “go” bag in the van for unexpected hospital stays.  Well, we should have packed that bag and left it in the stinkin’ van.  I came down to Cincinnati on Wednesday morning with Mom for Ellie’s sedated echocardiogram.  I was nervous about putting her under sedation, so I’d asked for Mom to come with me while B was at work.  We’d had several echos in the past, so it shouldn’t have been a big deal… I felt a little silly asking for company.  I’d be glad later that I’d asked, though.

Ellie was calm when we came in and responded to the oral sedation (pushed through her NG tube) within a few minutes.  The tech started the echo and Ellie’s oxygen saturation dropped.  The nurse said, “I’ll start some oxygen”.  I said… “No, she can’t be on oxygen”.  Ugh – not this battle again.  The anesthesiologist came in and explained to me over and over again that it’d be fine and that it was necessary.  I was still hesitant.  They ended up just doing some blow-by oxygen, which I was a little more comfortable with.  The echo tech was not as talkative as Teresa (the one in Dayton we know well)… so we didn’t get much out of the experience, really.  Once finished, they gave us the okay to wake Ellie up.  Well, that little stinker didn’t want to wake up for anything… which wasn’t much fun.  Mom and I tried to stimulate her to wake her up but she was having none of it.  Fortunately, they weren’t too busy, so we were able to hang out for a while.  Ellie’s pulse ox continued to fluctuate – at one point it read as low as 35%.  They kept going for the oxygen and I questioned it each time.  Eventually, they told us that they’d be admitting us.  When they got ready to transport us, they started fitting Ellie for a nasal cannula.  I said, “No, I’m not okay with that”.  Again, they reassured me that this was necessary and that they wouldn’t transport her without it.  I told Mom that I was about to make the nurse and anesthesiologist mad, but I was calling Dr. Luby.  When I called her office, she was not available, so I left the desk a message that I needed her to call me ASAP.  She called back right away and we joked about how difficult Ellie is.  She said that since this was strictly respiratory and not a cardiac event, she was okay with a little blow by oxygen.  She was very clear that she’d be upset if Ellie was given 100% oxygen through a cannula.  The anesthesiologist was in the room while I was on the phone.  I know I made her mad by questioning her process so much, and for that, I’m sorry.  I’m just trying to do what I think is best for Ellie.

The cardiologist at Cincinnati (Dr. Andersen) came in and talked with the anesthesiologist to get the scoop.  She mentioned to him that I was refusing oxygen.  He said he’d talk with Dr. Luby… which was good news to me.  We were transported up to the 6^th floor (the heart institute) for observation.  They kept Ellie on blow by oxygen, but each time they’d remove it, her saturation would drop again.  They explained that sometimes sedation can do this – and it didn’t work in Ellie’s favor that she has Down syndrome and already struggles with weak muscles and airway obstruction.  When the nurse came in and gave me a tutorial on how to break down the couch to a bed, it was obvious that we weren’t going anywhere on Wednesday.  I called B and asked him to come down and bring a few things so we could stay until the morning.  Mom headed out.  Ellie got a chest x-ray and we were told that she had fluid on her lungs and was switched from oral Lasix to IV Lasix to help shed that pulmonary edema.

During Thursday morning rounds, we were able to stand in the circle with the cardiologist, cardio fellows, nurses, etc.  They talked about how Ellie’s AV Canal defect was not balanced (originally, it was balanced, but has progressively changed to where the left side is larger than it should be).  They also talked about her “generously sized” heart.  I asked to see the x-ray they’d taken Wednesday night.  Her heart is HUGE!  I don’t know that I’ve ever seen an infant’s chest x-ray, but I was surprised to see that Ellie’s heart literally took up half of her rib cage.  The apex of her heart was almost in line with the bottom of her ribs.  I know this is because her heart has to work extra hard.  The cardiologist also explained to us how they could tell that she had fluid on her lungs.  Interesting.  He also talked about how this could partially be because of the administration of oxygen (grrrr… this is why I was so adamant in the echo lab).  They discussed how Ellie’s low oxygen saturation could be due to an airway obstruction and talked about having a pulmonologist check her out today and possibly do a sleep study on her.  She could possibly have sleep apnea. 

Shortly after rounds, though, Ellie started one of her fits.  We didn’t get too excited about this because she’d had these almost daily for about 6 weeks now. The cardiology team wasn’t so calm.  They were in here constantly asking questions about these episodes and watching as her heart rate and respiratory rate went through the roof.  She was taking over 70 breaths per minute and her heart rate was consistently over 200 (maxing out at 210).  She did this for several hours.  They were honest in saying, “We’ve never seen this before, really”, and asked to video her episode so that they could use it for training and to show the other staff members.  We agreed, of course.  Ellie had some ventricular tachycardia going on from time to time as well.  Dang it.  It started with lip smacking (and she’d just taken a full feed) and progressed to fussiness, restlessness, her usual backbend, head arched back to the left position with arms and legs constantly flailing.  One of the cardiac fellows suggested that this could be seizure activity.  What??  We told him that this was something Ellie did daily and that it was always accompanied by profuse sweating and she was able to elevate her body temperature considerably during fits.  This is the first time she’s had a fit in a clinical setting, though, since she started to spike her temp during them.  After 4 hours, Ellie calmed down.  An hour and a half later, though, she started another fit.  I’d never seen more that one of these in a day, so I was alarmed.  We put her on our cold floor at home and it’s the ONLY thing that soothes her.  They brought in ice packs and made Ellie a chilly water bed to lie on.  This was working.  The neurologist was brought in to evaluate Ellie.

Finally calm after the 2nd fit of the day.  Poor sweet girl.

The neurologist again went through the routine with us and asked us questions about these fits.  After evaluating Ellie for a while, she said that she had two predictions for us, and they’d start testing for both.  Her first prediction is that Ellie is having seizures (for whatever reason).  She said the lip smacking, body position and arm and leg movements were consistent with seizures and would cause her breathing and respiratory rates to increase, her blood pressure to increase, and the sweating and elevated body temp made sense.  She wanted Ellie to have an EEG through the night to see if they could capture another fit.  The other option that might make sense is called autonomic storming.  I’d never heard of anything like this.  I knew the autonomic nervous system controlled things that we don’t think about (blood pressure, heart rate, breathing, etc.).  Autonomic storming is where the body throws these out of balance.  This normally happens after a traumatic brain injury or damage to the spinal cord of hypothalamus gland.  That part of the description doesn’t apply, but the description of what happens during these “storms” is spot on for what Ellie does.  For now, she’s plugged into a million electrodes (okay, like 27… but still) and will have an EEG through the night.  Tomorrow morning, they’re going to try to get her in for an MRI.  The EEG will be able to tell us if she’s having seizures (if she has a fit while it’s going) and the MRI will show if there is something going on that may be causing autonomic storming.  These two things are very scary to me… but I finally feel like we’re trying to find an answer that makes sense for these fits she’s been having.  It’s scary that she has a normal body temperature when she goes to bed, a normal body temp as she starts her fits, but is able to drive her temp up (even with Tylenol) during the fits… sometimes as high as 105 F.  So answers would be great if we can find them. 

Leads on her head to start the EEG.

Am I terrified that she has to be sedated again for the MRI??  You bet.  But you know… we just take it all in and do whatever we think is the best thing to do for our sweet Ellie.  On the plus side, it looks like we’ll have an earlier surgery consult with Dr. Morales.  They’ve talked about possibly moving her surgery date up some.  We’ll find out more tomorrow.

Brandon and I had our Thanksgiving dinner along with hundreds of other families in the comforts of Cincinnati Children’s.  Our boys were able to have Thanksgiving dinner with my family, which I’m sure they enjoyed.  Happy Thanksgiving y'all... thanks so much for your thoughts and prayers :).  We love you!

The Schroer grand kids (minus) Ellie setting up Christmas decorations after Thanksgiving dinner.

God Moments

I have no doubt that this post will make some people uncomfortable.  I know there are a lot of readers that maybe don’t “buy into” the whole spirituality thing.  But there have been so many things in this journey that stand out to me as what I call “God moments”, and I have to share a few.  First, let me tell you that I do NOT believe in coincidence.  I don’t believe that random things happen or play out in a way that seems like they’re part of a plan, but are not.  I believe that everything that happens (good and bad) is part of a plan… a plan to strengthen and prosper us - not a plan to destroy us.  Afterall, my favorite scripture comes from Jeremiah 29:11 “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not harm you, plans to give you hope and a future.”

Every step of our journey with Elizabeth seems like it was laid out for us… which I know to be true.  Let’s start with her name.  We chose the name Elizabeth Kate long before we knew we were having a baby girl.  Actually, I think we picked it out in 2012 when we were expecting Kaleb.  Kate was my great grandmother’s name (well, it was Katherine).  Elizabeth is biblically based.  Like our boys, we chose names based on biblical text.  We gave Lance the middle name Joshua and even started Kaleb with a “K” because it was closer to the Hebrew “Kalev”.  This makes us odd, I know.  In 2010, I went on an Emmaus walk and sat at the table of Elizabeth.  [My Emmaus friends will appreciate this: My name is Jackie Ward and I attended the Greater Sidney Area Women’s Emmaus Walk #51 and sat at the table of Elizabeth (clap).]  Anyhow, I really believe that God had started to work on my heart and prepare me for the journey ahead at this time.  The scripture above from Jeremiah was actually the scripture that was posted on all of our materials for this walk. 

In a Bible study based on women of the old testament, I remember the day we studied Elizabeth.  For those of you who maybe aren’t familiar, Elizabeth was a relative of Mary (mother of Jesus) and was the mother of John the Baptist.  Elizabeth was pretty advanced in age when she found out she was pregnant.  She was also told ahead of time that her son would be different than others, that he would serve a great purpose and that he would prepare a way for the savior.  In this study, we talked about the turmoil that Elizabeth must have felt with this.  Complete joy for her pregnancy, of course… but inner turmoil as a mother knowing that her child would be different and would maybe lead a difficult life.  We talked about how none of us want our children to be different, really, and how that knowledge is hard to swallow as a parent.  None of us want our children to struggle or suffer physically or socially.  As we sat in the car after our Down syndrome diagnosis… this all came flooding back to me.  Of course our baby was supposed to be named Elizabeth… that name had been on our minds 4 years before she was born.  Two years before she’d arrive, I’d sat in that Bible study with tears streaming down my face thinking about what Elizabeth must have felt knowing her child would be different.  Here I sat, in my van, with the same emotions running through my veins for our own child.  Of course she’s Elizabeth!!

Now that I’ve laid the groundwork on her name… I need to tell you about 2 more God moments that I’ve had in this journey that CANNOT be coincidence (because, remember, there is no such thing in my world).  On Christmas day 2013, I came down the hallway holding my first positive pregnancy test for this pregnancy.  After months of tears over negative tests, I couldn’t have been more excited to hold a positive one.  And what better day than Christmas, right?  Just 4 days later, I sat through church service and felt compelled to come forward to the altars and surrender my pregnancy over to God.  I did this with the boys, too… but I never felt like I had to hit the altar for it.  I was 5 weeks along.  Months and months went by before I looked back at my journal and read about this surrender.  In the same journal entry, I had written about the development of the baby.  I said that we were 5 weeks along and during this week, the baby’s heart would divide into 4 chambers and start to beat.  WHOA!!  Hold up.  The baby’s heart would divide into 4 chambers and start to beat?  By the time I re-read my journal entry that I had so innocently penned, I knew that Ellie’s heart didn’t divide into 4 chambers at all.  It did start to beat, but it was missing a whole lot of what would have made it a typical heart.  Psalm 139: 13-14 says, “For you created my inmost being; you knit me together in my mother’s womb.  I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.”  There is not a doubt in my mind that God was knitting Ellie together and knew that her heart would be different than mine… her heart would cause me a lot of stress.  Even still, Ellie was His child and she was, indeed, fearfully and wonderfully made.  God drug me to the altar that morning… again, there is no doubt in my mind about this.  He saw what was happening with my child and He knew that I’d need Him more in this journey that I’d ever needed Him in the past.  As always, He was right!

The goose bumps didn’t end there for me, though.  Last week, we finally heard back from Cincinnati Children’s about scheduling Ellie’s surgery.  First, let me tell you that a month ago, Dr. Luby told us that she was going to request that Dr. Morales perform the surgery.  She said that this wasn’t guaranteed.  Dr. Morales is the head of cardiac surgery in Cincinnati, and it wasn’t easy to get a surgery scheduled with him, but Dr. Luby would try her best.  When Cincinnati called, they called from Dr. Morales’ office – Ellie has the surgeon that we wanted!  He’s the absolute best (I know the others are amazing as well) in a hospital that is one of the top in the nation.  Celebrations!  So we started laying out plans for an echo (which is today, Wednesday, November 26^th), a surgery consult (which is December 3^rd) and a surgery date (which is December 29^th).  I wrote all of this down and called B to give him the scoop.  Just this week, I started thinking about our surgery date and also started thinking about those prayers said at the altar last year.  It was then that I realized that my surrender at the altar was on December 29, 2013.  I surrendered the health and development of my baby to God exactly one year (To. The. Day.) before I will surrender her again, into the hands of surgeons who God will guide in repairing that broken little heart.  Ugh!  I can’t even handle how much God is showing off here.  So in the midst of my anxiety and fear… I have to look to Him. 

When I feel alone:  “The Lord himself goes before you and will be with you; he will never leave you nor forsake you.  Do not be afraid; do not be discouraged.” – Deuteronomy 31:8

When I’m anxious:  “Be still, and know that I am God…” – Psalm 46:10

When my heart is in turmoil:  “Do not worry about anything, but in everything by prayer and supplication with thanksgiving let you requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” – Philippians 4:6

And terrified:  “So do not fear, for I am with you; do not be dismayed, for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10

And when I just feel like giving up:  “When the righteous cry for help, the Lord hears, and rescues them from all their troubles.” – Psalm 34:17

… I could go on for days.  I'll update with some pictures later, too.  Thank you, again, for following along.  Have a wonderful Thanksgiving!

About to punch a nurse...

Haha – if that isn’t a strong title, right?  Before my medical buddies get defensive… I am trying to be understanding, here. 

So here’s a little back story to what’s going on with Ellie bug right now.  On Monday night, Ellie starting having a fit around 2am again.  Dang it – we were hoping that we were on the other side of those.  Brandon and I took turns trying to soothe her.  We made sure her diaper was clean and dry and that she wasn’t too cold/too warm… and that her feed pump was set up fine.  Still cranky.  Dr. Luby said that after they’d ruled out all other things, this was probably just colic.  “Just colic” is funny to me.  I know we do not have a fraction of the colic experience that other parents have had or are having… but it’s terrible.  I think I have a lot of patience most days… but this colic deal is not fun – for Ellie, for me or for Brandon.  Anyhow, the worst part of this fit was over around 6:30am.  She was restless, though, for several more hours.  Around 9:30am, I went over to her crib and she was drenched in sweat.  I took her out of her cozy sleeper and took her temp – 103.8F.  Yikes!  I called B and gave her Tylenol.  I know that we have strict instructions from the cardiologist and from our pediatrician that if she’s running a fever of 100.4 or greater, that she needs to go to the ER.  We had the same rules for our boys when they were less than six months old.  Dang it.  I’m not trying to sound selfish here, but I had a very busy day and a meeting at 12:30pm that had already been moved when she was in Children’s before.  So Brandon came home and picked Ellie up to take her to Dayton again.  They arrived around noon.

 Ellie bug in the ER.  She was tired... and extra wiggly.

 Tracy sent me this picture of our boys hanging out with Uncle Josh at work Tuesday afternoon.

She was in the middle of testing when I came down around 2pm.  She wasn’t allowed to eat until after she had the testing done, so she was a hungry little monster by the time I could feed her.  She was pretty cranky still, so it took over and hour to gavage this time.  Her urine and blood tests for viruses came back negative.  They did not check mucus because she wasn’t congested at all.  Around dinner time, the ER doc came in and said we’d start getting ready for discharge.  She stepped out to write the discharge orders while a nurse came in to take one last set of vitals.  When he hooked Ellie up to see her oxygen saturation, it was lower.  It was in the low 80s.  I told him that her baseline was the low 90s, but that she’d dipped into the 80s in other hospital stays.  Then Ellie decided to play games.  Her pulse ox dropped into the 70s.  At that time, the nurse plugged her into oxygen.  I told him right away that our cardiologist didn’t want her on any oxygen.  Cardiology came in and took her off of oxygen.  The nurse came back in, spazzed out that she was low again, and again started oxygen.  For the third (or 5^th or 7^th) time, I told him that Ellie wasn’t supposed to be on oxygen.  We went back and forth like this several times… and I was pretty darn frustrated (to say the least).  I know he was just doing his job and I know that he was following a typical protocol.  I know that he probably deals with bossy parents all day long.  I’m sorry for this.  But every time he hooked her up to oxygen, my blood boiled a bit.  I knew that cardiology didn’t want Ellie on oxygen because it would only make matters worse.  She has pulmonary hypertension and oxygen dilates the blood vessels in her lungs – exaggerating what was already making her work so hard to counteract.  When her pulse ox was really low (it went as low as 58% at one point) she turned a dusty blue color.  I’m not going to lie, it was pretty darn scary… but the nurse was a lot more panicked than I was… which is why I wanted to punch him.  Seriously, dude… you work in the ER at a children’s hospital… THIS cannot be the worst thing you’ve seen today, right?  End rant.

Needless to say, we weren’t going home after those shenanigans.  The ER doc started the admission process, instead.  Dang it – a full 180.  They suctioned Ellie's nose to test for viruses there.  She came back in (the ER doc, that is) and said that she’d talked with cardiology again and also talked with the ICU.  Both said, “I don’t care if she dips into the 40s, DO NOT put her on oxygen”.  They were okay with her being on room air, but not more than 1 Liter.  They were originally getting us a room in the Almost Home unit on the 4^th floor, but the respiratory team suggested we go to the 3^rd floor where the staff used air more regularly.  Sounded good to me – the third floor had been our home the last two times we’d stayed.  When we found out we were headed to room 358, I said, “Hey, that’s the same room we were in before.  Those nurses are going to be excited to see how much bigger Ellie is”.  And they were.  When we were in 358 last time, it was when Ellie was a month old and was admitted for failure to thrive.  She weighed a lousy 6 pounds 7 point some odd ounces.  She’d gained three whole pounds since then and (while she’s still very much a peanut) she’s so much bigger and chunkier than before.

 After bath picture of the boys with Makayla and Zandria.

Ellie was given Tylenol at 3:30am, but around 4:30am, her fever spiked again.  Since they couldn't give her anything, they stripped her down to her onesie, turned our thermostat way down and put her on a cooling pad.  This picture makes me shiver just looking at it.

The viral tests (from her mucus) came back negative, thank goodness.  So we’re waiting on cardiology to tell us if they think this is some kind of infection or if this is just going to be our new norm as we get closer and closer to surgery.  The cardiologist who was with us in the ER did say that we had to keep a close eye on her breathing and congestion.  She is all clear now, but if she does catch a cold that settles into her lungs, surgery would have to be moved back 4-6 weeks.  We don’t want that.  We want to get through surgery and get this NG tube out as soon as the surgical team is comfortable with everything.

Long story short:  she likes to make us panic and we’re still waiting on a surgery date.  Oh, and she’s a rotten little turkey… no surprise there.

---- update as of 4:00pm 11/12 ----

At about 2:30 today, there was going to be a concert in the lounge on our floor.  Since Ellie isn’t in any kind of isolation, we decided to venture out and enjoy some music.  The performers were awesome.  We saw Raelynn (who I remember from watching the voice a few seasons ago) and Maddie and Tae… all country singers.  There were only a few people in the lounge, so it was really cool to be so up close and personal.  And our sweet Ellie bug got her picture taken with these beautiful young ladies. I wasn't familiar with them, since I rarely listen to country music, but click on their names above to listen to one of the songs they sang for us.

Ellie meeting these pretty girls.

Shortly after we were back in our room, Dr. Luby walked in to chat.  She said that Ellie looked great and that all of her test results were negative, but to just watch her.  She said her fever is what was causing her fussiness and not the other way around.  She said there was no amount of fussiness that could raise her body temperature that much.  We talked about how Ellie seemed to be so hungry all the time and she said it was because of the continuous feeds.  She made a good point that because she’s getting 30 ccs an hour (instead of 85 to 90 at a sitting), she never gets a chance to fill her belly.  This causes 2 things.  1 – she never feels full and will always feel hungry – not ideal, but not terrible.  2 – this can actually shrink her stomach if she’s ALWAYS eating this way.  So we need to make sure she’s just getting this during the night.  Good to know!  She also said that she talked to the surgical team in Cincinnati and that they should be in contact with us to set up a consultation and surgery timeline in the next week or two.  So I’ll be waiting for that call.  Otherwise, we’re good to go.  Well, except that as I write this, they’re taking her vitals and she has a fever of 102.4 again.  Really, Ellie?  Really??

---- update as of 9:00pm 11/12 ----

The doctor did end up discharging us, praise God!  She was concerned about the fever, but asked that I keep an eye on it and make sure that we’re in contact with our pediatrician within 48 hours of discharge.  I can do that!  So we brought our baby girl home and our house is full, once again! 

Thank you for your prayers and for following along.  Much love!

Good news all around!

Monday Ellie had an appointment at the Synagis clinic (where she gets a shot to prevent RSV).  This was her first time getting this, but she did fabulous.  Later on Monday we had a family chiropractic appointment and we all left feeling much better than when we arrived.  Ellie seems to prefer looking to the left when she’s laying down… so we’re trying to see what Dr. Josh can do to help her here.  Andrea, the physical therapist, said that if she continues to show preference to one side, Ellie may need to wear a “cap”.  Noooooo… not the helmet!  We’re trying to be diligent at turning her head right when she’s laying, but that little booger makes up her own mind most times. 

Tuesday was an awful day at home.  I logged on to my work computer at 5am and everything went into turtle mode.  When I did a restart on it, my computer did all kinds of techy mumbo jumbo and then froze on the “starting windows” screen.  I called our help desk and the IT guys said, “yeah, your hard drive is in the process of crashing”.  Excellent!  So I was stressing because I had several things that I needed to get out the door… like, yesterday… and now had no way of doing them.  Totally my fault for procrastinating… but some of the reports were in progress… and now needed to be handed off to get them to clients on time.  I know – this means nothing to you… haha… but it was NOT a fun way to start my day and I felt awful for handing tasks over to my coworkers (who were willing to take on last-minute tasks ever so graciously).  

Tuesday afternoon, we saw Deb, our Home Health nurse.  The boys are crazy about her.  They always greet her at the door and talk her ears off the whole time she’s at oour house.  She usually lets them wear her stethoscope and listen to their own heartbeats and tummies with it.  No wonder they love her so much.

I was only supposed to work a half day Wednesday morning, but couldn’t do much more than field emails from my phone while I waited for my new laptop to arrive.  It was delivered just before I had to jet out the door to head to Dayton.  We had 3 appointments at Children’s that day and I was sweating the audiology appointment pretty seriously.  

First stop: GI.  This was the first time we got a chance to meet our gastroenterologist.  He was great, but he said he wasn’t happy at all.  This made me nervous, but he was mostly just concerned that we were making things much harder than they had to be.  First, he wanted to get us set up with a continuous feed pump to use at night and while I was working.  Bonus!  He was also concerned that we didn’t have a plan to do much with the NG tube yet.  I didn’t know that NG tubes should only be in for a few weeks.  He said that after 6 weeks, you can run the risk of doing permanent damage to the nose/nasal cavity because of the tube.  You can also start seeing permanent damage to the esophagus (because the sphincter at the top of the stomach is always open to accommodate the tube and can let stomach acid bubble up into the esophagus).  Since Ellie has already had her NG tube for 4 weeks, he wanted to get her scheduled to put in a G tube (or G button) as soon as possible.  He said we’d have to check with cardiology before we could make any real surgery plans, but this was the route he’d suggested.  He also prescribed Prilosec for Ellie after I told him about her daily crying episodes.  They were no longer at night (praise God), but they were still during the day.  He said we could try that and see if maybe the crying is related to reflux… which could be the case, even though it didn’t happen after every feeding.

Second appointment: Audiology.  Ellie was sleeping when we arrived in audiology – which was great because she HAD to be sleeping for the test.  Of course, once we were back in the testing room, she wanted nothing to do with sleep.  Nichole, the sweet lady who was running the test, just kept saying, “I’ll let you try to get her to sleep and I’ll be back in a few minutes”.  She did this 4 or 5 times in the hour we were down there… to no avail.  Ellie refused to sleep.  Nichole set us up for another appointment next week, but on the way out let me know that she’d be in the office until 5pm, so if I was able to get Ellie to sleep at some point, I could try bringing her back to do the test.  By the time I got out of the elevator on my way up to cardiology, Ellie was sound asleep.  Little turkey.

On the scales in cardiology, Ellie weighed 3.855 kg (or 8 pounds, 8 ounces).  Dr. Luby was thrilled with her weight gain and was amazed at how relaxed Ellie looked in her breathing.  I was excited to tell her how alert Ellie had been lately and that she was now rolling over and showing off.  I also told her how Ellie didn’t want to cooperate in audiology.  We had to laugh.  We talked about our GI appointment and discussed the pros/cons of the NG tube vs. the G tube.  Dr. Luby agreed that we didn’t want to risk permanent damage to the nose and esophagus with the NG tube and she thought a G tube would be a good idea… but not before heart surgery.  She explained that the placement of the G button (on a torso as small as Ellie’s) would be just a centimeter or two away from where her incision would be for open heart surgery.  The risk of infection trumps the risk of damage from the NG tube.  However, because Ellie was looking so healthy and doing so well a t this point, Dr. Luby thought it was a good idea to bump up surgery so that we didn’t keep the NG tube in for a ridiculous amount of time.  She suggested surgery in a month.  (gulp… a month?)  That’s scary… but it’s scary no matter when it happens and if I’ve learned anything along this journey, it’s that this woman knows what she’s talking about!  If Dr. Luby says that Ellie is strong enough and will do well in surgery, then Ellie is strong enough and will do well in surgery.  Dr. Luby was contacting the surgery team at Cincinnati Children’s and told me that they’d be in touch with us soon.  I don’t know how soon is “soon”, but we haven’t heard from them yet.  It looks like she’ll be having surgery before the end of the year, though, as long as the surgeon concurs with what Dr. Luby suggests.  Dr. Luby would also contact GI and let them know that we’re holding off on the G tube placement.  She said, “they may think I’m a Prima donna, but I’m okay with that.  They always have to fold to what the cardiologist says in this kind of a situation”.  Excellent!  If she needs a G tube after surgery, that’s not a problem at all.

Now… as for this hearing situation that I’d been sweating for a few weeks:  I was able to get Ellie to sleep again as we left cardiology and I asked the nurse to call down to audiology and see if Nichole would take us back.  It worked out and we headed straight down.  Ellie woke up as the ear muff things and electrodes were placed on her head, but went back to sleep shortly thereafter.  Nichole was able to run the test and hallelujah, Ellie passed on both ears.  My heart was jumping for joy.  Nichole said that they couldn’t really test behavioral responses until Ellie was 8 or 9 months old (and the issues I saw were behavioral), but she said, “Ellie has the ability to hear… there is nothing indicating that she cannot hear”.  YAY!!  My concern in this whole matter wasn’t with how this could impact our family.  I’d have no problem learning sign language and interpreting for her the rest of my life if that was what I needed to do.  I know our family would learn with us and it would have been just fine there.  My concern was for our little bug when she entered school.  There are few things that make you an island quite like a language barrier… and I didn’t want Ellie to have to deal with that on top of anything else that she might already find as a barrier.  Can you tell that I prepare myself for the worst when I go in for testing and such?  That may sound awful, but I figure that if I mentally prepare for the worst, then anything less than the worst case scenario is means for celebration, right?  So we’ll see later if her behavioral responses to sound are different than what we’d expect… or maybe we’ll just find out that she’s incredibly laid back and doesn’t really startle.  Bonus!  For now I’ll celebrate the fact that she IS able to hear.  Good stuff.

After a very long day bouncing all over the hospital, it was finally time to head towards home and pick up my boys.  We had dinner with good friends and I tried to catch up on some work when I got home.  I was ready for a calmer day on Thursday.  Around 8:30pm, the medical supply company had a delivery truck driver at our door to deliver the feed pump and equipment to us.  As I unpacked it, I saw that we had an IV stand that went with it that could be wheeled around the house.  Brandon said, “aww, man… I was hoping to keep IV bags out of our house until we were like 90.”  So, we’re feeling extra old with all of the random medical stuff around our house, but I have to say that the pump is pretty amazing!  I know it makes me sound totally lazy, but now I only have to wake up at night if Ellie needs her diaper changed.  Score!  This momma can sleep… and sleep is priceless.

Thursday morning, just before going into a meeting with my supervisor, Ellie wiggled one little finger out of her mitten and managed to pull her feeding tube out again.  What a turkey!  So, in my meeting, I told my supervisor that I’d need to leave work a little early to make it back down to GI in time for an open appointment.  Silly Ellie!  She either likes the attention she gets at Children’s or she likes the car rides to Dayton.  The boys went with me on this trip and Lance said, “Where are we going, Mommy?”  “To GI”, I said.  So the whole time he was asking where we were going and then repeating everything I said.  It was adorable listening to him try to say “Orthopedics” (the closest x-ray area to GI).  And I’m endlessly amazed at how accommodating the staff members are of the boys.  I love that they make it an adventure for them to come along.  The guy who did the x-ray [each time they place a new tube, they have to do an x-ray to make sure it’s in her stomach] brought the boys into the office with him while I held Ellie for the x-ray and let them pick out stickers.  The front desk greeters gave the boys a puppet show and more stickers.  And of course, there are those little bus wagons that they get to ride in.  Adventures all around!  We stayed with the Skinner kids for a while that afternoon, then the boys were off to Tracy & Josh’s house for the night to hang out with their “friends” (cousins), who were all off school on Friday.

 I'm a rotten turkey who rips her tube out - in her jammies and sleep sack here :) 

[sorry this is so out of focus]

 Kaleb loves to ride the rocking horse in the waiting room for the GI clinic

On Friday morning, Ellie had her 2 month well child visit with Dr. Taylor.  She weighed 9 pounds even on that scale (she always weighs quite a bit more at this office than at the cardiologist).  Big girl!  This puts her at the 66^th percentile on the chart for girls with Down syndrome (and the 3^rd percentile for typical girls).  So, she’s still very much a peanut… but she’s growing beautifully.  I mean, for every kid that’s always above the 90^th percentile (Kaleb), there’s another out there that has to occupy the lighter end of the spectrum, right?  After work, I went to pick up those rotten boys of ours from Tracy’s.  A quick dinner at home and we were off again – me to visit with a good friend Cindy and the kiddos with Daddy to go to Grandma and Grandpa Maier’s house.  The boys would be spending the night with Grandma and Grandpa so that I could spend my Saturday morning at Girls of Grace at church with family and friends. 

 Holy rainbow colors, batman!  I love it.  Our pretty girl in ruffles on Friday.

After Brandon got off work on Saturday, we went up to Cridersville to scoop up the boys, then to Lima to meet with the Beech family for dinner, then to Chuck E. Cheese’s for the kiddos.  The kids were beyond tuckered out by the time we made it to church this morning and took amazing naps for us this afternoon.  Ellie bug was super grumpy today – just letting us know that she rules the household, I guess.  Looking forward to next week where we only have Home Health and therapy appointments (four appointments are much more manageable than 9 in a week)!  I think I’m going to go to bed early tonight (can I tell you how awesome that continuous feed pump is again??).  G’night friends – thank you, again, for following along.  All the prayers you lifted for Ellie’s hearing were surely answered this week!

 Snuggling with Mommy and giving ornery smiles.  I finally caught one... 

she's sticking her tongue out w/ it... but I'll take it.