A recap on Ellie's adventures...

I realize that some of you have been following Ellie’s story for 8 months… I thank you for that (since we started this journey – long before her birth).  Others have picked up Ellie’s story somewhere between here and there… some of you are brand new to her world.  This is just a quick snapshot to give a little background for those of you who haven’t been along for the whole ride.

On March 28, 2014, we were called into our OB’s office to alert us that the quad screening test had come back flagged that our child might be at a higher risk of having Down syndrome than a typical pregnancy.  Our world stopped.  We came right in and did additional, non-invasive testing so that we’d know for sure.  It took (a very long) 10 days for test results to come in.  We went back to our OB’s office and found out that our baby, indeed, has Down syndrome.  We also found out that we were having a girl (celebrations!) and that she had a heart condition that we knew nothing about (terrifying).  We named our sweet girl Elizabeth Kate Ward, knowing that we’d call her Ellie.  About a month later, we finally saw the perinatologist and had had a detailed ultrasound and a fetal echocardiogram.  Once this was done, we were referred to a cardiologist at Dayton Children’s because she was diagnosed with a complete AV Canal defect, a much more severe heart defect than we originally thought she had.  We spent the rest of our pregnancy praying for our baby and a safe delivery and having countless appointments with cardiology, perinatologists, a new OB staff who could deliver in Miami Valley (so we had access to a Level 4 NICU), Early Intervention Specialists, and many others.  We began mentally preparing ourselves and our home to take on the challenges of raising a baby with special needs.

 The pregnancy announcement we were happy to share at this time last year.

A beautiful glimpse of our sweet girl when we were 26 weeks pregnant.

Ellie arrived on September 3, 2014 weighing 6 ½ pounds.  She was beautiful and tiny and chubby.  She was floppy (as expected with Down syndrome) and needed immediate intervention to assess her cardiac function.  She only spent about 30 hours in the NICU, though, which was our first indication that she is one spunky little girl.  We were able to take her home when I was discharged on 9/5 and enjoyed our first few days at home as a family of five.  Ellie was back in Miami Valley with me on 9/8 as I was admitted for preeclampsia.  Thank God that this came AFTER her delivery.  We were able to bring her home again, by this time she was a week old.  She was eating well and acting about as we’d expect her to act, physically.  When Ellie was 15 days old, she started to show her first signs of distress – signs of heart failure.  We knew what to look for and we knew this day would come, but we were hoping we wouldn’t see this until she was at least a month old.  She started to sweat considerably during feedings and two days later started retracting when she’d breathe.  We alerted our cardiologist and were in for another appointment when Ellie was 3 weeks old.  Her lungs were stressed by the amount of blood circulating to them and were starting to take on fluid.  Ellie was put on diuretics to help shed the fluid. 

 Ellie is here... and beautiful!

Snuggles in the NICU w/ Mommy

The cheeks... oh, the cheeks on this girl.  She's 5 days old here.

A week later we came back in for a follow-up appointment (Ellie was almost a month old now) to find that the diuretics had worked beautifully, but all of the chunkiness and weight gain that we’d seen in the first month was just water weight.  Our baby girl was below her birth weight at a month old.  We were admitted to Dayton Children’s for failure to thrive and congestive heart failure.  Oy – hard things to swallow for your little one.  After 4 days of different (unsuccessful) feeding strategies, Ellie got an NG tube (a feeding tube that went through her nose and into her stomach).  She responded beautifully to this.  She got a little squirrely and pulled it out from time to time (5 or 6 times in all, I think), but other than the chaos of learning a whole new regimen, this was a welcome change.  We had a home health nurse come to monitor Ellie’s vitals and weight twice a week to make sure she was on track.  Before long, Ellie regained those beautifully puffy cheeks we’d come to love so much.

4 week cardio appointment - no more puffy cheeks

When Ellie was 6 ½ weeks old (just after I’d started back to work), she started throwing these massive fits.  During this time, her heart rate and breathing rate would increase, she would be restless and acted like she was hungry.  Her body temperature would climb and she would sweat profusely – for hours.  The first day she did this we had no idea what was going on, but once the “fit” was over (it lasted a full 5 hours), she was the calm, content baby we were used to.  We called our cardiologist and she said that if it happened again, we needed to take her to the ER.  Ellie’s heart simply couldn’t handle that kind of stress.  When it happened again the next night, we were more alarmed.  She ran her temp up to almost 104 degrees and we took her to the ER at Dayton Children’s.  They couldn’t find anything wrong with Ellie.  We consulted with her pediatricians, her cardiologist and the GI doc and none of them had an explanation for what was happening (to their credit, she never had a fit in their presence).  We were told it was probably just colic.  Two more times, Ellie reached a temp of 105 during a fit and we rushed her back to the ER.  Each time we visited the ER, we were admitted, but they could never find a root cause of Ellie’s fevers.  We swore that her fits were causing her fevers, but we were always told that was impossible. 

Ellie during one of her many post-ER stays in Dayton Children's this fall.

Brandon and I joked that we needed to keep an extra bag in the van so that we could be ready for an overnight stay any time we had an appointment.  We should have packed that bag.  Ellie was scheduled to have her AV Canal defect repaired with open heart surgery on December 29^th.  In preparation for this surgery, we had to bring Ellie down for a sedated echocardiogram at Cincinnati Children’s on November 26^th.  Ellie did not recover well from sedation and we were brought up to the cardiac step-down unit for observation.  Observation turned into an overnight stay, but we were hoping to get out on November 27^th (Thanksgiving).  Ellie started one of her fits on Thanksgiving day and the cardiology team was not okay with what was going on.  They brought in the neuro team and Ellie was soon diagnosed with autonomic storming.  Essentially, the autonomic nervous system controls all of the functions that we don’t have to think about (breathing, heart rate, temperature, etc.).  During storming, this system misfires and sends all of this into chaos.  We watched as Ellie’s heart rate climbed over 200, her breathing became fast and shallow, her blood pressure increased, and she raised her body temperature considerably as she started to sweat.  This is what we’d been experiencing at home, but didn’t have a diagnosis for… until now.  Ellie was put on medication to mute the storms and was given a rescue medicine when they’d arise. 

The following day, the cardiothoracic surgeon stopped by to do an informal surgery consultation.  He drew some pictures for us and ultimately explained that he wouldn’t be able to do one open heart surgery to repair Ellie’s heart.  The right ventricle was simply too small to function properly.  It would not be able to hold the volume of blood it’d need to hold.  Ellie’s surgery plan was completely altered.  She’d no longer be a 2-ventricle repair.  She’d have to be a 1-ventricle repair.  This is called hypoplastic right heart syndrome and is a very severe, incredibly rare congenital heart defect.  We were crippled by the news.  The surgeon also told us to prepare for a stay of at least a week, probably two.  We had to run home quick to pick up clothing and such to get us through the next two weeks.  During the next few weeks, Ellie had an EEG, a heart cath, and MRI, a sleep study, a bronchoscopy, a swallow study, an upper GI study, a few EKGs and countless x-rays (I’m probably forgetting other tests here).  After the heart cath, we were informed that Ellie would need a tracheostomy (a tube inserted into her neck for airway support) and with that came a G tube (a feeding tube that would come right out of her belly - to replace the NG tube in her nose).  Ellie had both of these surgeries on December 12^th.  It was obvious that our hour-long appointment was turning into a stay that would last several months.  We were on a roller coaster of good days/bad days and good news/bad news.  We’re still on that coaster. 

EEG - lots and lots of wires and stinky glue

Sleep study - Ellie has severe obstructive sleep apnea :(

They let us cart Ellie down to the lobby for a family Christmas photo by the Frozen tree

Ellie’s biggest obstacle remains her pulmonary vascular resistance (PVR - the resistance in the arteries from her heart to her lungs).  Our surgeon has never seen PVR as high as Ellie’s in a child as young as her.  Typically, this resistance doesn’t increase until babies are at least 10 months old.  Ellie had incredibly high PVR at 3 months old.  This poses serious issues with her surgical plan.  To operate as a 1-ventricle repair, they’ll need to reroute the de-oxygenated blood from Ellie’s body and let it passively flow into her pulmonary arteries.  The rest of the heart will then just operate as if it was just the left side of the heart, pumping blood from the lungs to the body (it is a series of several open-heart surgeries).  This surgery already has lousy outcomes in kids with Down syndrome… and is impossible with a high PVR.  As it stands, Ellie has no surgery options.  Her PVR is too high to do the bypass surgery and too high for her to accept a transplant.  So she’s in a sticky spot, for sure.  On New Year’s Eve, the surgeon performed her first heart surgery.  He placed a band around her pulmonary arteries to restrict the blood flow to her lungs.  Ellie seemed to feel better almost instantly.  She wasn’t storming.  She had better color.  She was more alert.  She wasn’t as sweaty.  We were on the upswing with her, for sure. 

Daddy picked out this pretty Christmas tutu for Ellie.

Daddy and Ellie

Trying out the artificial nose in the therapy chair

Our beautiful, sleepy bug

A week after this heart surgery, she started storming again.  We felt defeated.  She has had storming episodes 4 more times in the week since.  We can manage, I know… I was just hoping that she had one less battle to fight every day.  Ellie had another heart catheterization done last Friday, though, and that offered some of the best news we’ve gotten yet.  Between the trach, the PA band, and Ellie being a rock star, her PVR is only half of what it used to be.  HALF!  The doctors were shocked that she had responded so well.  She’s still not eligible for surgery, but this test result is very encouraging.  We were finally transferred out of the Cardiac ICU (after a 35-day stay) and into the Transitional Care Center (where all the kiddos with trachs go).  We will need to undergo an extensive training regimen before we’ll be allowed to take our sweet bug home… and we’ll have full time nursing care in our home… but the idea of discharge is floating out there somewhere on the horizon.  We’ll likely be here for another 3-4 weeks.  But now that we’ve been here for 8 weeks, 3 or 4 more doesn’t seem so terrible.  We were here for Thanksgiving, Christmas and New Year’s.  I’m hoping to be home and settled before Easter!  Valentine’s Day is probably a stretch, but that would be wonderful!

We couldn’t do anything that we’re doing without our rock solid support team at home.  Our family who has absorbed our 2- and 4-year-old boys… our friends and community that have been praying for us and offering so much support… and all of those who share our story to comfort others who may be in a similar situation.  We could not be more humbled and thankful.  You all are so amazing and we’re incredibly blessed by the things that you do to hold us up each day.  We love you!

Cath results are in!

It took FOREVER for the docs to come talk to us after Ellie's heart cath & bronchoscopy today.  She went in at 8:30am and we didn't hear anything back until after noon.  But the news was worth the wait!  They need Ellie's pulmonary vascular resistance to be less than 3.0 for her to be eligible for the surgery she needs to make her a single ventricle repair.  On December 3rd, that resistance was almost 8.0 (dangerously high)... so high they weren't sure if she'd ever be eligible for surgery.  The trach and PA band surgeries were done to ease the pressure on Ellie's lungs in hopes of decreasing this resistance.  Ellie responded beautifully to both surgeries and managed to bring that resistance down to 4.1... just two weeks after her banding surgery.  This is unbelievable!!

We'll have another cath done in two months to see if she's eligible for surgery yet, and with these results, we're filled with hope!  Not only does our little bug ACT like she feels better, she's actually getting better every day.  Praise God!!  I'll post again soon - posting from my phone is tedious.  Thank you for all of your thoughts & prayers today.  CELEBRATIONS!!

Heart cath #2 tomorrow morning...

Tuesday was positively rotten… the first part of the day, that is (see "The thunder rolls" post, if you haven't already).  We started Ellie back on propranolol, though, and she hasn’t had another storm since.  Praise God.  In the afternoon, aunt Emily came to snuggle on our little bug spent hours chatting with me.  We laughed and shared stories and just sat together while she rocked Ellie bug.  Wonderful.  Wednesday, we were transferred out of the CICU after our 34-day stint there and were finally down in the Transitional Care Center (TCC).  Tuesday marked a full 7 weeks at Cincinnati Children’s and the first night in the TCC (Wednesday) was easily the best night of sleep I’ve had in our entire stay.  I didn’t realize how much nicer it was to stay in a non-ICU room before.  It’s actually dark and you can close out the sounds and lights of the hallway.  Amazing!

Sticking her tongue out at aunt Emily

Smiles :)

Today, Thursday, was a busy day for me.  Ellie, too.  She had PT and OT and Speech came by to do another feeding trial with her.  She still didn’t drink from the bottle, but they put a little milk on her thumb and she went to town sucking on that.  So… hey, she hasn’t lost that ability at least!  Always a plus side, right?  She was working on rolling with PT today and she was really showing off later in the day when she went from side-lying and rolled to her belly during a nap.  That’d be great if she wasn’t on sternal precautions for 6 weeks.  Ha!  No worries, we rolled her right back and gave her support to protect her sternum.  The past 2 days we’ve been battling higher blood pressures.  This is totally new for Ellie and I’m hoping there is no correlation between this and her pulmonary pressures.  Today, however, she took a nap and must have been in a super deep sleep because her heart rate and blood pressure dipped much lower than her baseline.  See… full of surprises.  Nothing to be concerned about, thankfully.  We just changed her sleeping position so that she was a little less likely to bottom out.  She had a pretty active afternoon and got a visit from Kelly Berner.  Oh, how wonderful it is to bond with another momma who has spent a lot of time in this very unit, who can give me pointers on home nursing care, and who can help me comprehend this amazing outpouring of love we’re feeling from our friends and family.  Kelly is strong beyond any strength I can imagine… and I so admire that in her.  She’s also very sweet and cuddled on bug bug for quite a while today, rocking her to sleep.

Moving out of CICU - yahoo!

Working out in the therapy chair

Cuddles w/ Kelly

"I'm watching you, mommy" and "no, I'm not going 

to give my smiles while you have your camera ready."

Tomorrow is a big day (again).  No surgeries, technically, but she will be sedated and have two tests run.  She’ll start at 8:30am with a deep bronchoscopy – where they’ll look at her airway and the branches of her lungs and make sure everything looks good.  If she has a lot of gunkiness (that’s my own medical term) in her lungs, they’ll be flushing them with saline as well.  I think she’d benefit greatly from that.  Once the bronchoscopy is done, Dr. Hirsch will start another heart catheterization on her.  This is NOT the cath that will decide if she’s eligible for surgery or not.  This one is to establish a new baseline for Ellie (now that she has the PA band and trach).  However, it would be disheartening if there was no change since December 3^rd in her pulmonary vascular resistance.  When this was measured before, it was more than 8 times what it should have been… the trach and PA band should help reduce the stress on her lungs, ideally reducing that resistance.  So we’re hoping and praying that they notice an improvement in this resistance tomorrow.  A big difference would be encouraging… but any improvement would be a win in my book. 

That’s all I have for now… a relatively short post, for me.  We appreciate all of your love and prayers!  We will post again sometime tomorrow to let you all know how the cath went and hope to share great news with you.  Thank you and God bless!

The thunder rolls...

I know - cheesy reference.  No, this is not about some extramarital affair that Garth sang about.  This is about storming... autonomic storming.  When neurology first discussed storming with us, they walked out of the room and Brandon started in with, "The thunder rolls...".  So it's been the text that I would send him when another storm was happening.  When I sent it this morning, I nearly broke.

The last 2 mornings, I got up around 4:30 and the nurse told me that Ellie was upset around 4 and that she'd given Ativan.  I thought maybe she was being overzealous, but that nurse was very attentive and I really like her... so I knew she was using her best judgement.  This morning, however, I got up and gave Ellie kisses quick and hopped in the shower.  When I got out, she was very upset and her heart rate was in the 190s, but the nurses were messing with her, so I assumed she was upset with them.  A while later, I held her to calm her down (they had just suctioned her and made her gag and get sick).  As I held her, her head jerked from side to side... not smooth at all.  Her heart rate wouldn't budge and occasionally peaked over 200 before the monitors alarmed. 

I called the day nurse in and asked why the upper limit was set to 200 instead of 175 (like it used to be).  She said 200 was usually the standard for babies.  I told her that Ellie’s was usually set around 175.  I asked her to take a temp… almost 101 F.  This isn’t a crazy fever, no… but a low grade temp, along with the elevated HR and a BP that wouldn’t read on the cuff (because Ellie was moving around too much) meant that Ellie was in the midst of another storm.  UGH.  Tears rolled down my cheeks as I asked for a dose of Ativan.  We’d halved the dose last week so that it didn’t put Ellie totally out during withdrawal.  The half dose didn’t touch the storm this morning.  The nurse practitioner came in and rubbed my back while I cried over Ellie.  She approved the other half dose of Ativan and agreed that this is what Ellie looks like when she storms.  I told her that I wasn’t happy with an upper HR limit of 200 on the monitors.  It was changed at some point early in the morning (probably because the nurse was tired of it alarming – which further frustrates me).  Without staring at the monitor all day, I HAVE to know when that HR is increasing.  I HAVE to be able to catch these storms before they get harder to manage.  I’d much rather be able to give half a dose of medicine and have her comfortable than give the full dose that knocks her out. 

So… I feel like I’ve been punched in the gut this morning.  I was so ready to be done with these.  So ready to move past this.  Tears… lots of tears.  Brandon and I have often talked about God’s place in all of this.  We’ve had much worse days than this, of course, but we’ve asked, “If we give God all of the praises when we get good news, are we also allowed to be mad at Him when bad news comes?”  That’s a hard trial on faith – for sure.  I don’t know the answer to this, of course… but I have to remember that God loves us in a way that we can’t even comprehend.  Ellie is as much His child as she is mine and He cares for her even more than I do (even though that seems impossible).

In rounds this morning I asked if she can start propranolol again.  We have to find a way to manage these before they spiral back to where they were when we came in.  So that’s where we’re at.  Dang it.  Mom sent me a text this morning that said, “Get knocked down seven times.  Get up eight.”  Sometimes I just wish that it was ME getting knocked down.  I kind of deserve it.  Ellie does NOT!  But hey, who said life was fair?  Sometimes your days just suck… and there’s not a prettier word for it… there really isn’t.  So far, this day sucks.  I’m frustrated at the situation and furious that it could have been handled differently.  I made my grievances known, though… so I’d guess that Ellie’s HR parameters will not be changed again.  Okay – now to refocus for the day…

Thank you for following along.  I’m sorry I don’t have a better attitude this morning… but I promised to be real – and this is real.  I really do appreciate your support and prayers – they keep me sane on days when I’d otherwise lose it completely.  Can I request prayers that the reappearance of storms does not indicate high PVR??  You’re going to start sounding like me in your requests to the big man. Thank you, thank you.  We love you dearly!

A little more vent support…

On Saturday, the pulmonologists finally came down and met with us in CICU.  They watched Ellie breathe, checked on all of her stats, and talked to us about the goals for her.  Ellie is laboring some with her breathing (retracting significantly, flaring nostrils, etc.).  They suggested that we go back to giving her ventilator support through the night.  We talked about a few different options and we said that our ultimate goal was to lower her pulmonary vascular resistance (PVR) so that she’d be eligible for surgery soon.  With that information, the pulmonologists were sure they wanted to give her vent support through the night to allow her to rest.  We don’t want her working any harder than necessary, of course. 

Today, the pulmonology team decided that they’d keep her on the vent MOST of the time, giving her windows through the day on the artificial nose.  I was very confused why we were going back on vent when I thought it was such a good thing to be off of it.  They said that Ellie can definitely handle being off of ventilation, but her CO2 does increase some while she’s on the nose.  While it’s still in an acceptable range, it’s not in an ideal range.  The attending physician explained further that an increase in CO2 can cause her to have slightly higher PVR.  Since PVR is the determining factor for surgery in the future, we need to do everything we can to keep that as low as possible.  So… back on the vent it is for Ellie.  They assured me that going back on the vent would NOT cause her to regress into NEEDING the vent.  That’s good, then, I guess.  

So – that means we have to kiss the dreams of cardiac step down goodbye and revert back to the plan of going to the TCC before going home.  We were hoping that the artificial nose would be sufficient day and night, but that’s just not the case.  It looks like we’ll be going home with a ventilator… whether we can have it set to vent or CPAP at night is still up in the air… something we’ll sort out in the TCC.  We were supposed to go to the TCC last week… they didn’t have open beds there.  We were hanging out through the weekend with the hopes of going today… and they just told me that’s not going to happen, either.  Dr. Hirsch came by to let me know that he has Ellie’s next heart cath scheduled for Friday morning (excited and nervous about this).  So when the attending told me it’d be another day or so before we could move to TCC, I let her know that we’d be back up in CICU after the cath anyways… so if it didn’t make a difference to the unit or staff, I’d rather not shuffle around too much.  It seems silly to move to a different unit on Wednesday only to be back up in CICU Friday morning.  That really works against the continuity of care I’m striving for.  Although… I’m really ready for visitors (it’s now been 5 weeks of flu restrictions) and I’d like to be able to eat in our room (not okay in the ICU).  But hey – it’s not about me at all.

It also means that we're really thinking more about home nursing care.  We knew that we'd be going home with at least 8 hours a day of nursing care... if we go home with a vent, we'll have more hours every day of nursing care.  I can't begin to tell you how uncomfortable that makes me.  I was uncomfortable with the initial idea of having a home health nurse come to our house twice a week.  As it turns out, we fell in love with our nurse and our boys are crazy about her.  But that was someone who was only in our house 2 hours a week... I'm really anxious about having nurses LIVE in our house.  We're essentially going to be adding 1, 2, maybe 3 new people to our family... people that will be in our house while we sleep, people we won't be able to travel without.  So, naturally, that's making me a little batty.  How do you pick a new adult to add to your home?  I hope we come upon some very nice people relatively quickly.  I've heard from others that it can take a while to find someone who really "meshes" well with your family.  Goodness, it's like finding a new sitter or a new daycare... but this time, the person has to be well-versed in trach care and will pretty much be responsible for making sure that Ellie is breathing safely at all times - kind of a big deal.  Plus, it has to be someone who gets along well with the rest of the family, because let's face it, those little boys are going to be very interested in a new face.

This past weekend was pretty busy.  Our boys weren’t down here, so we did more training on Ellie’s trach stuff and managed to get some errands run.  On Sunday we headed home to get projects at the house outlined before we head home (whenever that may be).  We also had attended a volunteer’s dinner at church and were able to see so much of our church family that we haven’t seen in 2 months… which was pretty emotionally overwhelming… in a good way!  While we were north for a day, my sister and niece came down so that Ellie wasn’t by herself all day.  I had to break some rules to get my visitor list changed for the day… and I really doubt they’ll let me change it again, but it was nice to have someone to cuddle our bug all day.  I think Tracy was a little caught off-guard when she saw Ellie.  First, she’s a chunky monkey… so much chunkier in person than in pictures – and way cuter in real life, too, I must add.  Second, Tracy had heard me talk about how unnatural the silent crying was, but until you see that first hand, I don’t think you can comprehend how pitiful it is.  Today marks a full month since Ellie got her trach, and I’m starting to get used to it.  Getting “used to” something is nothing like “being okay” with it, though… let’s be clear on that.  Finally, when Ellie is awake and has the “nose” on her trach, she needs suctioned a lot – as in, 4 or 5 times an hour.  So that’s different if you’re not used it it, too.  She’s usually more comfortable while she sleeps, but works up a lot of stuff when she’s awake.  Tracy and Georgia held Ellie and even helped her color a picture for us.  Amazing!  Here are a few pictures from their visit.

Smiles with Aunt Tracy

Checking out Georgia

Aunt Tracy helping Ellie color

Today Ellie did amazing during occupational therapy.  She raised her hands up to reach for a toy (first time doing that) and even tried to roll a little.  She was full of smiles for the therapist which had both of us adults laughing hysterically.  She showed how much she likes to gnaw on her thumb and worked on head control a lot (not very successfully).  It was quite the workout for her.  When OT was done, it was time for Speech to come by so we could practice bottle feeding.  At first, Ellie was interested in the bottle and happily moved it around and gnawed on it.  She didn’t actually get ahold of it and eat, though.  This is something we’ll continue to work on so that someday, she’ll again be able to eat by mouth. 

The next step: a heart cath on Friday.  We are praying and hoping and wishing and pleading for results that show that her PVR is lower than it was during her last cath on December 3^rd.  This would give us a glimmer of hope that Ellie is responding to her trach and PA band and that she may be eligible for surgery down the road.  We know it’s unlikely that we’ll see a big change right now, but any improvement is good news.  I would have never imagined that God and I would have so many conversations about pulmonary arteries and resistance and blood pressure… but we do… several times a day.  Right now, though, I have to give praises.  I am thankful that Ellie is able to gain weight and feels pretty good, I have to be thankful that we have good food and shelter down here and the best possible care for our baby.  I’m thankful for a reliable vehicle and low gas prices (although I know they’re not a good sign, long term) because Brandon is driving 3 hours a day.  I’m thankful for our family and support system.  I’m incredibly thankful for how healthy the rest of our family is… it’s amazing how health is something we’d always taken for granted.  We’re thankful… for so much… for all of you… for all of the prayers… for all of the blessings being showered down in the midst of this crazy adventure. 

Here are a few more recent pictures of Ellie and her daily adventures:

Pretty little bug sleeping in her Baby Sister shirt

Checking out her therapy chair

Puffy little hands

Raspberries from Daddy

Stunning in jewel tones today.  Ugh - I can't hardly stand it.

We had several staff members ask to take her home today ;)

This sitting business is hard work... puts her to sleep every time.

She absolutely loved OT today.  She was full of smiles and showed off by batting at toys and reaching for things.  We worked on head support... which is always very challenging.  She was trying to look at me for part of it, but her head kept bobbing, so her eyes were going all over the place.  It was quite funny.  She was tuckered out by the time we were done.  She's giving the therapist smiles here.

Team Ellie Bug Events

Okay, so this is incredibly difficult for me to post (just a personal thing about asking for help), but I think it’ll be helpful to anyone looking to get involved or searching for something fun to do to support Team Ellie Bug.  What we absolutely NEED is prayer and love from y’all, but I’ve been asked every day what ELSE people can do or get involved with.  So, here is the list of events (that I know of) that are planned by some rockin’ awesome people to support our family and lift up our sweet bug.  I will update this post if I hear of other things, so if you’re looking to promote one of these events, just share this link (or share it later whenever you choose).  Thank you so much (from the very bottom of my heart) to all who are putting their precious time, love and support into these events.  We are humbled each and every day by this outpouring of love for our baby girl.  If you post photos, feel free to use #TEAMELLIEBUG, too… we love seeing your posts!  [I will remove events once they're over so that you're never scrolling through old information ;) ]

-          Financial contributions:

o   Now - June

o   Organized to help friends near and far who are interested in donating towards Ellie’s care.  http://www.youcaring.com/medical-fundraiser/team-ellie-needs-help-with-medical-costs-please-help-out-/285682#.VKx9WYUo8jE.facebook

Withdrawal and an artificial nose...

Now that’s a title you won’t hear every day, right?  This is just a short update on Ellie.  Since Tuesday, as they have weaned Ellie off of her doses of clonidine, Ellie has been going through withdrawal.  This is NOT a fun process and totally breaks my heart.  They held doses of clonidine and propranolol Tuesday night after Ellie’s heart rate was bottoming out.  She hasn’t had any of those episodes since.  However, Monday, she was on 15 micrograms of clonidine every 8 hours.  Tuesday, they knocked that down to 10 micrograms… today and Wednesday, 5.  Our sweet girl was irritable Tuesday, but nothing crazy.  This morning and Wednesday morning, she was so irritable that she raised her temp, started sweating more, and shot her heart rate, blood pressure and breathing rate much higher than her baseline.  Initially, I thought she was storming again.  However, I was able to rock Ellie and soothe her with singing (my singing… which is horrible) and running my fingers along her arms and legs.  She’s a touch person… like me, and this calmed her down.  If she had been storming, I wouldn’t have been able to do anything to soothe her.  So when the nurses asked if she needed Ativan, I’d say… no, let me hold her first and see if she calms.  It worked Tuesday and Wednesday, but today I could only soothe her for a minute or two before she’d spike back up.  Her heartrate was bouncing around the 170s and 180s and while it was higher, her pulse ox would dip.  She got Ativan this morning and was finally able to rest. 

Yesterday and today, they needed to call for an extra (small) dose of clonidine to stop/slow her withdrawal symptoms.  It isn’t something that works immediately, but it does work.  Once past that, Ellie gets exhausted.  Poor kiddo.  I’d never known what withdrawal looks like… now I know that it looks exactly like her storming looked… so if you’ve seen withdrawal before, Ellie was doing THAT for 4-6 hours each day at home.  This is why we kept saying, “this is not colic”.  Now at least we have something that’s relatable for some people… if not directly, maybe withdrawal is something you have seen on TV.  For Ellie, withdrawal and storming are almost identical… except that I can soothe her during withdrawal.

She did a 4-hour trial on the trach collar yesterday morning – and like a champ, Ellie handled it very well (even through the craziness of withdrawal).  The RT made my day when she came in and said we’d try the artificial nose yesterday afternoon for 4 hours.  So from 4:30 to about 9pm yesterday, Ellie was on the artificial nose (with a little supplemental oxygen).  Yahoo!  Essentially, the artificial nose is just a little barrel that attaches to the end of Ellie’s trach.  On either end, there are air filters.  These filters capture some of the moisture when Ellie exhales and uses that moisture to dampen the air that Ellie breathes back in.  The filtering/dampening of the air coming in works just like your nose does… hence, the name.

Today, she’s going to be done with sildenafil (which is really Viagra… my immaturity makes me snicker at this).  Ellie was on this for pulmonary hypertension.  Her last dose was early this morning.  Now that we’re done with that, we’ll get a better idea of how her pulse ox looks without medicine.  The goal is to stay above 75%.  Dr. Hirsch (the doc who does the heart catheterizations) stopped in our room last night and told me that he’d like to do a cath on Ellie in two weeks.  This is just to see where her new baseline is after the trach and PA band.  We thought we would have to wait 8 weeks to see if any changes have been made.  Now, I do not at all anticipate that she’ll have so much improvement that she’ll be eligible for surgery… this is just to establish her new baseline, but it might be a nice sneak peek to give us an idea if it IS improving (which would fill me with so much hope).  Dr. Hirsch was thrilled that Ellie was so much more awake and alert than she was before her first heart cath (on December 3^rd).  She doesn’t look alert at all in these pictures, but she is very alert through the day, I promise.

Ellie's artificial nose today.

A close-up of the artificial nose (the white ends of the barrels are the filters)

A full body shot... simply to show you the adorable jeggings ;)

Her 1st trial on the artificial nose (yesterday)

Another exciting milestone, we started to bottle feed again yesterday.  This is the first time that Ellie’s had a bottle in almost a month.  We start slow, of course.  We only let her take 5 mL (1/6 of an ounce) yesterday… we’ll try 10 today… but these baby steps will help Ellie regain the ability to eat by mouth… something that is so basic – something we totally took for granted with the boys.  I really want this feeding situation to be a success.  While the g tube is essential right now in getting her the volume she needs, I want her to be able to partake in the simple pleasures of eating and tasting and enjoying the daily ritual of meals.  We’re getting there… inch by inch.

This week, I’ve met some truly amazing people.  There is one mom here (who was our neighbor when we were in the CICU before Ellie’s PA band) who is here with her son.  He’s a teenager who has Down syndrome.  This lady and her husband had 5 biological children (the youngest of whom has Down syndrome) and proceeded to adopt 7 more children (6 of them have Down syndrome).  Ahhhh… I just love this lady.  What a wonderful calling and beautiful heart she has! 

I also met Ava’s mom.  Ava is a little girl who spent 7 months in CICU after she was born 2 years ago (if you remember me posting a picture before Christmas of Ellie with a bear from Ava’s Army… it’s THAT Ava).  She, like Ellie, has a hypoplastic right heart.  Ava had a roller coaster ride those first seven months.  She also has a trach and g tube and, get this… autonomic storms (first person I’ve met who knows what that’s like)!!  Ava’s momma gave me so much hope because Ava kept getting tests to see if she was eligible for the Glenn procedure, and they kept saying “nope, not yet”… for over a year (until she was almost 2 years old).  This summer, though, Ava was finally eligible for the Glenn and did miraculous through surgery and recovery and is now a very happy little girl.  Her mom says that Ava is full of life and rolls all over the place.  Ahhhh – this woman just made me feel so much better about the outlook down the road. 

So yeah – that’s where we’re at today.  A day of withdrawal and med changes and a sweet artificial nose.  It’s going to be a good day now that we’re past the withdrawal symptoms.  Thank you for following along.  Sorry this post isn’t as short as I led you to believe, but thank you for hanging out ‘til the end.  May God bless you today and always!