First surgeries = success!

Let’s start by recapping the last few days.  Thursday started as a pretty uneventful day.  I worked from Ellie’s room and she slept almost all day.  She looked crazy uncomfortable when she slept (in her usual position), but that’s because she arched her back and extended her head back to the point where the back of her head rested on her right shoulder.  She did this to open her airway.  I took a picture of her sleeping this way and sent it to my siblings saying, “this is the last day Ellie will need to sleep like this” because on Friday, she’d get a tracheostomy to help her breath with ease.  It was also the last day that she’d have tubes taped to her face.  We hadn’t seen her pretty face without tubes taped to it since she was 1 month old.  As scared as I was about her pending surgeries, I knew they’d be big steps in the right direction for bug. 

Mommy kisses for Ellie bug - she was in such a great mood on Thursday.

 

This is how she was sleeping - head back and back arched to open her airway.

She's beautiful here... but we couldn't wait to see our pretty girl without tubes and tape on her face.

Thursday evening, I was sitting at my laptop fielding some emails for work when I heard a knock at the door and little voices entered the room.  Ahhhh – my boys!  I was so excited to squeeze them a bit.  I was NOT expecting company, but company was so very welcome!  Following the boys, I saw my sister, Tracy, and friend, Kelly Berner.  They came in bearing a basket full of cards and gifts and goodies.  I peeked at a few things, but didn’t want to dive into the cards right away because I knew they’d make me crazy emotional.  I thought I’d wait until Brandon was off work to open them.  Kelly spent a long time cuddling Ellie and talking to me about what to expect on the road ahead.  Kelly is the only person I really know who also has experience with trach care for her kiddo, so it was so nice to talk to her about Ellie and about the ups and downs of this hospital life deal.  We went down to the corridor to see all of the other guests (Josh and the Platfoot kids, Emily and her kids, plus Kelly’s two girls).  The kiddos made things for Ellie and brought us a Gilligan's Island themed Christmas tree - perfect!  Em and Josh came up to squish on Ellie a bit, then we went down and ate in the cafeteria together.  Brandon met us there when he was off work.  After everyone headed back towards home, Brandon and I went back to our room and started opening cards.  We were completely overwhelmed by the outpouring of love from our community.  We are incredibly humbled by the Making Miracles Happen foundation and had no idea (for real, NO IDEA) that there was a facebook group set up to collect cards and such for us.  We are still absolutely speechless by the love that was put into that basket for our family.  I don’t know what else to say except “wow” and “thank you”.  We love you all so much and are completely overwhelmed by how good people really are.  That’s not the image that you see on TV, it’s not generally what you hear in casual discussions.  I keep telling B that the absolute best thing about being in a hospital is that you are only surrounded by love.  Professionals who devote their lives to making kids better, families who support each other while enduring their own nightmares, and communities that rally around families to shower them with love and support.  It’s really something.  Not that I wish this experience on anyone… but I wish that others could feel the avalanche of love that we feel right now.  Thank you all, from the bottom of our hearts!

 

Ellie giving Kelly a look like, "Okay, so here's the deal..."

So thankful for the Making Miracles Happen Foundation. 

May God Bless everyone who was a part of this surprise.  We are forever thankful!

Our family in our Making Miracles Happen/ Flying Angel t-shirts.

Ellie will grow into hers eventually!

Friday morning, around 7:30am, we handed our sweet bug over for her first surgeries.  While the heart cath/MRI/scope business was scary (because she had to be sedated), it was nothing compared to handing her over in the OR yesterday morning.  I know that we'll have to do this again in about a week, so it was great that soon after handing her over, we were able to talk about other topics and take our focus off of exactly what was happening.  The g tube was inserted first and the GI fellow came out after surgery to tell us that everything went textbook perfect during the procedure.  They were able to go in laparoscopically (through Ellie’s belly button) to insert the tube.  The GI docs changed out with the ENT docs so that Ellie could go right into surgery #2 – placing her tracheostomy.  This surgery went without any hiccups, as well.  The ENT surgeon (Dr. Frisher) came in right after that surgery and she explained that Ellie did great here, too.  Celebrations.  She gave us some particulars about the trach itself and how it worked.  After leaving the room, we had other questions that the four of us (Brandon, me and my parents) weren’t all on the same page with.  I called down to the TCC (the transitional care center), where Ellie would spend after leaving the CICU, to set up a tour so that we could get a feel for what the trach would look like and what kind of equipment we’d be looking at.  This was tremendously helpful and we were all able to ask lots of questions.  Finally, it was time to head back up to the waiting room outside of CICU to see our Ellie bug.

Ellie's entourage headed to the OR.  We wheeled back 3 different stands of

support equipment tethered to her.  At least I could carry her back.

We still had to sit around for about an hour before the CICU team was ready for us to come back and see Ellie.  I was incredibly nervous to do so, but when we finally got to see her, she looked great!  Our little girl looked calm and comfortable.  What a relief!  This time, her post surgery face was clear of tape and tubes – for once, she looked like she wasn’t struggling to get a breath, and she could lay comfortably.  Because she wasn’t struggling to breathe, her monitors were not alarming constantly.  It was peaceful and reassuring… different than we’d expected, but a very welcome surprise.  We left so that mom & dad could see her before they headed home.  Look at our beautiful little girl!!

She looks so much more comfortable this time than she did last week.  Look at those cheeks! 

We can fully appreciate them without tape and tubes.

 

Grandma & Grandpa Schroer checking out our bug.

I know this is hard to look at... but it's the best picture to help you see what is going on.  Her trach is in her neck here, and the tube (with orange tape) on the left side of her belly is her g tube.  Right now it has a tube coming from it... after 3 months or so, it'll just be a little button on her belly.

Brandon and I ate some lunch and tried to relax a little before heading back up to see Ellie again.  Then we headed north to meet up with the Beech family.  Mom & Dad had met up with Shalynn in the morning so that she could take the boys while they came down for Ellie’s surgeries.  Andrew and Shalynn had the boys at their house (playing with their two kiddos who are the same age) all day.  We met up and had dinner and relaxed at their house before heading back to Cincinnati with the boys for a weekend of cuddles and movies and play time. 

 The boys playing in the toy box at the Beech's house.

 

Lance & Connor playing.

This morning, Brandon left for work and I crawled out of our bed and made myself comfortable between those 2 sleeping little boys.  I was able to cuddle on those little monsters for a good hour before they got up.  We had a usual morning… but it’s amazing how the simple things are so precious when you don’t get to do them every day.  I gave the boys a bath and laughed with them as they splashed each other.  We ate pancakes and eggs in the big kitchen and then played in the toy room with kiddos from around the world.  Kaleb took a liking to a 1-year-old beauty who was here from Croatia for treatments (because the best surgeon in the world for her condition is in Cincinnati).  The boys “rented” movies from the library and we came back to our room to hang out and watched one before lunch. 

Before the first movie was over, my friend, Joan, called and said she was over in the hospital for a surprise visit.  How awesome!  She came over to our room at the Ronald McDonald House and we chatted for a while before heading back to the hospital for lunch.  Our boys aren’t allowed up in CICU, so I’d been hanging out with them all morning and calling Ellie’s nurse for updates here and there.  Because I had Joan here, she sat with the boys (who were being totally rotten, by the way) in the lobby so that I could go up and see Ellie quick.  When I walked in, the nurse and respiratory therapist were doing trach care on Ellie – which is pretty icky right now.  Ellie didn’t look as peaceful as she had yesterday, which was heartbreaking.  I asked the nurse how she had done this morning.  She said that at one point, she was pretty upset and she was “wiggling all over the place and trying to cry”.  She required her pacifier constantly and had a higher heart rate, blood pressure, temperature and breathing rate.  I instantly thought that maybe Ellie had been storming… but because I wasn’t there, it was hard to say.  That made me feel awful.  The nurse said that they gave Ellie a dose of morphine (Ellie is on a morphine drip right now), but there was no change.  She then gave Ellie a dose of Tylenol, which made no change, either.  Finally, they gave her Ativan (Ellie’s rescue drug for autonomic storming).  The nurse said, “She likes her Ativan”.  Sad face.  If I were to guess, I’d say Ellie was surely storming, but again, it’s hard to know without being there.  They said she was not smacking her lips, which is usually a tell-tale sign… but she was doing almost everything else.  She did have her propranolol (the beta blocker used to prevent the storms), but stressful situations can still trigger storms.  It’s hard to say.  The only thing I knew for sure was that I felt guilty for not being there.  I stood and looked at Ellie, tears streaming down my face and arms aching because I knew that I couldn’t pick her up out of her bed until Wednesday.  How do you not hold your baby for 5 days?  Ugh – this is going to be a hard week. 

Ellie was awake and looking at me, but she didn’t smile when I sang her song to her.  She just kind of looked up at me all pitiful like.  She coughed a few times, and no sound escaped her little mouth.  As more tears streamed down my face, the nurse asked if I thought she needed more pain medicine.  No – I don’t want her to have any more medicine than she needs... and I know they could decide when she needed more.  I told her that I knew it’d be different with the trach, but I thought she’d still be able to make sounds.  She explained that with the swelling from surgery, no air would could pass the trach and make its way to Ellie’s voice box, so she’d be totally silent for a while.  That doesn’t feel right at all. 

The nurse asked me how much of “this” we knew before Ellie was born.  I said that we knew in April that Ellie had Down syndrome… and that news alone was so hard to process.  We knew that she had an ASD (a hole in her heart between her atria) then, too… but didn’t know that she had a complete A-V Canal defect for another month.  Upon delivery, we knew we were having a baby with Down syndrome and a severe heart defect.  Oh, what I would give today if she only had Down syndrome.  Huh – how crazy is that?  I’d give anything for our child to just have Down syndrome.  Nine months ago, Down syndrome was devastating.  Now it would be such a relief if that was all that we were looking at.  Every time I have this conversation with people, it brings up the topic of prenatal testing.  I guess I didn’t realize that it was pretty uncommon to do the quad test in your second trimester.  People always say, “we didn’t want to know because it didn’t change anything”.  Well, I can see that.  I just don’t ever look at prenatal testing as something that would ever determine how we felt about our baby.  I think that’s a very common misconception – so common that every time the topic comes up, it’s always followed with the same “we didn’t test because we knew we’d keep our baby”.  What??  Us, too.  Maybe my purpose in life is to let people know that you can be prolife and still have non-invasive prenatal testing done.  Ha!  It didn’t change how we felt about our baby, but it did change the plans we had for delivery.  Did I have some crazy anxiety as our pregnancy progressed?  Sure.  But we were much more prepared for her delivery, too, and it allowed us to line up therapy and intervention and find a great team of professionals to help us on our journey.  I can’t say enough how positive the experience was and how strongly I feel about prenatal testing.  If we had delivered Ellie in a different hospital, would she have been okay?  Maybe.  Would we have been devastated at her birth instead of being ready to embrace our different child with a severe (and very scary) heart defect?  Absolutely. 

Okay, off of that soap box.  Back to our reality.  I told the nurse that we still didn’t know that Ellie had any other “issues” until we were admitted in Cincinnati before Thanksgiving.  We knew she was throwing massive fits on a daily basis.  We didn’t know these fits were autonomic storms.  We didn’t know until the day after Thanksgiving that she had hypoplastic right heart, in addition to her A-V Canal defect.  We didn’t know she had so many respiratory issues, either.  Essentially, we had no idea what a busted up little mess our bug was until just a few weeks ago.  Praise God that we had an appointment in Cincinnati.  Praise God that Ellie was a little turkey for them, too, and we could get all of these things diagnosed.  So, as much as I’m completely bummed out today that our bug looks so miserable and I can’t hold her and she isn’t able to make a sound… I’m also so incredibly thankful that our eyes have been opened more in the past eighteen days than any other time in the past year.  I’m thankful that God had brought Ellie through the tests and procedures and surgeries like a champ.  I’m thankful for a job that can be done from a hospital room.  I’m thankful that we have such an amazing hospital just two hours from home full of professionals who are among the top surgeons in the world for our daughter.  I’m thankful for the support of family and community as it rallies around our little girl and embraces our family each and every day.

Pleading with God

I’ve been talking with other parents who are here with their kiddos, reading their blogs, and just trying to stay connected with families who we have so much in common with.  It’s sad, but it’s wonderful all at the same time.  I read a blog post this week where a dad had written about a conversation he had with God while he was driving from Dayton to Cincinnati after getting a call that they were doing CPR on his baby girl.  Thankfully, their baby girl pulled through and she’s doing much better each day, but his confession really spoke to me.  He called this “embracing the suck” – as in, embracing that what you’re going through sucks… every second of it… but it’s part of life and it’s something you just have to do.

Reading his post, I thought back to our drive home this past weekend.  We had to go back, feed the chickens, take care of some loose ends, and grab more things from home that we needed.  As I drove (and Brandon slept in the passenger seat next to me), I found my mind wandering back to a conversation I’d had with one of my favorite people (Pastor Jim Wheeler) almost five years ago.  The day was March 12, 2010.  Wheeler and his wife were taking Brandon and me out for lunch and as we sat across from them in a booth, I started to cry and told them all about my nephew, Jared, who had passed away 5 years ago from that day.  Wheeler, in his infinite wisdom, held my hand and told me that it was okay to be upset, that it was okay to still hurt and it was okay to be mad about it.  I felt like it was so unfair that he’d been torn away before he was even 6 months old.  My heart hurt – like an indescribable hurt that I’d never felt before the day we lost Jared nor since.  I hurt for my own loss, but mostly for the loss that Tracy and Josh felt.  I wasn’t a parent at the time of this conversation, so I felt this kind of hurt even before I knew what it meant to love someone so much you’d die for them.  HURT – lots of hurt.  Wheeler held my hand and said, “I know there is nothing that anyone has said that has helped.  People probably told you that God needed little angels, too, huh”.  “Yes… and that just made me more angry.”  He said, “I know.  I tend to think that God just doesn’t like to see His babies struggle.  He doesn’t like to see them hurt and he doesn’t like to see them suffer.  It’s unfair for babies to struggle, so I think God gives them rest.”  Ugh!  That was the first time that anyone had said anything that made me less angry.  I was still incredibly hurt, but I wasn’t mad anymore.  I found peace that God had given Jared rest.  FINALLY, a reason that helped… even just a tiny bit! 

Back to the present:  I think about Jared often.  There are things that Ellie does that remind me so much of him sometimes.  But other times, the words of Pastor Wheeler roll through my mind and I wonder if Ellie is suffering.  Then I go into panic mode and I plead with God.  “Please, God… don’t take my baby.  Please!!  Please let me keep her and please heal her body so that she doesn’t have to work so hard.  Please, God, please.  I am not as strong as Tracy and Josh… I’m not.  I need her to be okay.  I need her to be okay.  I need her to be okay.”  Driving home I just kept repeating this as tears streamed down my face.  Inside, I know that God never “takes” people from our lives.  That’s not the kind of God we serve.  He simply gives them rest.  How selfish am I that I don’t want Ellie to rest?  I want her to fight… fight like crazy.  And she’s doing just that – like a champ.  I know that God has plans for her and plans to work through her (which He is already doing in ways that amaze me).  There is nothing more terrifying than handing your child over for a procedure when you know that there is a big risk involved.  But I also know that what I’m pleading for and scared of is what every parent feels.  They may not be handing their baby over to surgeons, but maybe they’re handing over a set of keys to an eager teenager.  Maybe they’re dropping their daughter off at college.  Maybe they’re sitting bedside while their child goes through chemo.  I know that I’m not alone in my prayers… I’m not the only one who pleads to God for the sake of her children.  I know that this is something that every parent in the world does… and I take comfort in that. 

Friday is going to be another big day for Ellie, and again, I’m terrified.  But I know that there is peace that passes all understanding that lives in my heart… given as a gift from above to keep me from pulling my hair out on hard days.  I know that Ellie has many days ahead of her yet… so much life to live yet.  I hold onto these things when I know she’s going into surgery.  I know that my sweet girl will be hard to look at when she’s out of surgery.  I know that anesthesia makes her look lifeless.  Intubation plus anesthesia brought back vivid, horrifying feelings for me last week.  I know these days are ugly and hard and horrible.  But I know these are steps we must take because they’re the steps that make life a little easier on our bug.  If the tracheostomy lets her breathe a little easier, it’s worth every ounce of trauma I feel.  I know this is going to make breathing less laborious for her every day.  I know the G tube is going to continue to make eating effortless for her.  I was terrified two months ago when Ellie was given an NG tube because it never occurred to me that she wouldn’t be able to eat - something so basic.  Now I know what a blessing it’s been and I know that with a trach and g tube, she’ll have more energy to grow and develop.  Maybe we can start to feed her again and reteach her how to use her mouth.  After a while, maybe we’ll get to spoon feed her… I cannot wait to make baby food for her.  This was one of my favorite things to do for the boys when they were babies.  She’ll get to try avocados and bananas and pears.  So while I plead with God these days, I know I’m not alone… and I know that He’s going to give me many more days/weeks/years to love on our baby girl and many more adventures to plan for her (even if they’re as simple as eating from a spoon). 

Okay... so that was a heavy subject... sorry.  Here are some photos to lighten the mood a little ;)

Our pretty girl on 12/8

Getting a bath... she loves this time of day

Family Christmas picture with the Frozen tree

Sleepy bug

The boys helped my mom set up her Little Peoples Nativity

Kaleb at the allergist w/ my mom.  He did a great job.  Big guy, Kaleb!

The boys helping decorate the Christmas tree at my mom & dad's house

Lance - looking thoughtful as he bowls with Grandma & Grandpa Maier

Not bad form for a 2-year-old.  Go, Kaleb!

Visiting Santa with Grandma & Grandpa Maier

Sheryl had this picture of Ellie from the Maier Thanksgiving (11/22 - just a few days before Ellie's hour-long appointment that turned into a very extended stay at Cincinnati Children's)

All of Me...

Ellie had the video swallow test and the upper GI test done today where they push barium through her NG tube to make sure that her upper GI tract is functioning and structured properly… it is!  Then they had her drink the barium mixture through a bottle to see if she was able to swallow without aspirating.  With a preemie nipple on the bottle, she had great success.  If we stepped up even to a level 1 (used by most newborns), Ellie couldn’t handle the bolus and a little trickled into her trachea.  So… preemie nipple it is for her! 

After the study, I talked in length to the nurses, GI docs, speech pathologists, ENT docs, general surgeons and cardiology folks about our sweet bug.  Then I sat alone with my thoughts for a while, jotting notes and doing a little research on my own.  Before you ask, I only look at medical journals and reputable sources (.edu and .org websites… never .com ones).  I was inundated with facts, charts, graphs, you name it.  And if you know me and what I do for a living, you know that these kinds of things speak to me.  First, I looked at single ventricle congenital heart defects and learned that they’re so incredibly rare (I knew this).  The chance of having a baby with a hypoplastic right heart (which we now know Ellie has) is 5 in 100,000 births.  The chance of having a baby with Down syndrome is about 1 in 700.  The chance of your baby having autonomic storms that are not related to a brain injury… there aren’t numbers on that (at least not that I could find) because almost all autonomic storming is related to traumatic brain injuries.  So if we just factor in Down syndrome (1:700), plus the chance of having a baby with hypoplastic right heart (5:100,000), we had a 7 in 1,000,000 chance of getting both.  That’s not taking into account the odds of having a baby with an AV canal defect or any of the other “surprises” she’s brought forth.  With those odds (if we were gambling folks), we should be playing the lottery, right? 

I didn’t know that an underdeveloped right ventricle was much rarer than an underdeveloped left ventricle (as in, 95% of hypoplastic heart defects impact the left side… only about 5% impact the right).  Both are the most complex forms of heart defects and both are the most complex to fix, surgically.  The procedures have to be done in a series of steps (so if we go with the plan they currently have for Ellie, she’ll end up having at least 3 open-heart surgeries).  The procedures have been around for about 40 years.  I haven’t learned yet, however, that when you come across the words “average life expectancy post-op” that I need to STOP reading.  That number is scary.  REALLY SCARY.  However, I have to take into account that these procedures have only been around for 40 years (only is relative, right?) and that the data on survival rates is based on some of the earlier procedures, and they’ve come a LONG way.  The data shows that typically, patients live for 15-30 years after these procedures... more if they go for a heart transplant down the road.  That’s a horrifying statistic… but one that I know Miss Ellie is going to leave in the dust.  She’s going to blow by that no problem, she’s tough like that!

With the structure of Ellie’s heart, we have 3 surgical repair options:  1) reroute some of her deoxygenated blood, allowing her heart to function like it has 1.5 ventricles, 2) reroute all of her deoxygenated blood, allowing her heart to function like it has just the left ventricle, and 3) a heart transplant.  However, in Ellie’s current state, we have exactly zero options.  None of these surgical procedures will work unless Ellie has low pulmonary vascular resistance (low blood pressure in the arteries to her lungs).  Right now, Ellie has extremely high vascular resistance.  These procedures simply won’t work right now.  The hope is that after she gets a tracheostomy this week, her vascular resistance will go down and the constriction of her arteries will relax.  Once that happens and it is confirmed with another heart cath (in 3-4 weeks), they’ll be able to put a band around her pulmonary artery, thus mechanically restricting the blood flow.  Ellie’s body is actually restricting flow on its own right now (a protective measure the body does to keep from destroying her lungs but is rarely seen in a child as young as her).  If this procedure is successful, then we can proceed to surgically repair the heart.  If the procedure is not successful, the outlook is even worse.  Babies with this type of heart defect who are not eligible for surgery (where Ellie is now), have a life expectancy of just a few years.  I know… this sounds morbid… but this is what I talked to the docs about today and I know that I have to know what we’re up against… and pray, pray, pray that this is not the road we have to travel.

Typically, a baby born with an underdeveloped right ventricle (hypoplastic right heart) need to undergo surgery immediately after birth (or within a week).  Ellie is doing so well (again, a relative term) because of the way her heart developed (or rather, didn’t develop).  The only thing that is Ellie’s saving grace right now is that she is missing most of her septum.  This allows the left chambers to kind of accommodate the blood that the right ventricle is too small to hold.  Sometimes, it’s possible to kind of “grow” the right ventricle a bit.  This is why they reroute the blood from the superior vena cavas (this is plural because Ellie has 2 of these veins instead of 1) first.  This allows the blood from the inferior vena cava to still dump into the right ventricle and gives this ventricle a chance to grow and develop a little to maybe accommodate that blood volume.  This isn’t always possible, but it is something we can hope for.  This would result in the 1.5 ventricle repair I mentioned earlier.  Okay… I can process this and mentally prepare now.

The cardiologist then asked me if anyone had gone over the length of our stay.  I told him that I knew she’d be getting a g tube and a tracheostomy this week and that after those procedures; we’d need to spend about 5 days in the CICU, then go to the 3^rd floor to transition home.  He agreed, but said the CICU stay could be more like 7 days and that when we’re transferred to TCC (transitional care), we could be there for a month or more… easily 2 months if she needs ventilator support.  Whoa!  I wasn’t ready for that.  I said, “So what you’re telling me is that I need to go get a Christmas tree for our room, right?”  Ha!  We both chuckled a little bit.  Then I looked at Ellie and said, “you have an interesting way of turning an hour and a half appointment into several months in the hospital, young lady”.  He said… “Yes, you’re kind of in a Gilligan’s Island situation, right?”.  I sang, “A three hour tour… a three hour tour”.  And he said that an ideal situation for Ellie is that upon reevaluation with a heart cath in 3-4 weeks, we’ll find that she’s ready to start her surgical journey, which would mean much, MUCH more time here.  He said that if she does well (which is of course what we’re rooting for), we could start the surgeries and such after the heart cath… but that would extend our stay significantly.  That would make the stay 4-5 months (or more).  So yeah – we might as well set up residence in the Ronald McDonald house at this point (we do have a room there now).  We’ll be here for a while. 

In other news, I had followed a story of Matt Hammit several years ago (he’s a Christian artist for those of you who might not know).  About 3.5 years ago, he came out with a song called “All of Me” that he wrote while his wife was pregnant with their 3^rd child, Bowen.  Bowen would be born with a hypoplastic left heart (very similar to Ellie’s hypoplastic right heart) and they were told that he might not make it.  If he did, they’d have a long road of risky surgeries ahead.  Bowen underwent his 1^st open heart surgery when he was 5 days old.  Bowen is now 3.5 years old and has had several more open heart surgeries – so this is super encouraging.  Anyhow, Matt Hammit wrote an entire album about the emotions and struggles they endured with Bowen, the most popular track is “All of Me” and it sure captures what parenthood feels like.  I hope that you love it as much as I do.  So, pray for our sweet Ellie… pray for healing and that the trach is a HUGE step in the right direction for her.  Pray that this opens the door for surgical options that she desperately needs… and pray that she beats the odds that are stacked against her.  I know I’m asking a lot here… but I know that prayer is the most powerful tool we have… and I know she’s lifted by hundreds (or more) prayer warriors every day.  Thank you – we love you – we are constantly humbled by your thoughtfulness.  Enjoy this song!

Captain Ellie's Log, stardate 051214.3

Captain Ellie K. Ward

Captain's Log, stardate 051214.3:

This is my first published communication with the world outside.  The Guard(ian)s are sleeping.  The room is dimly lit and there is a scent of freshly applied baby soap about me.  The bubbling noise to my right would indicate that I am submerged in some kind of aquarium, but I am not.  The transparent tube connecting the eerily calming sound to my nose would indicate that this is some kind of advanced breathing assistance apparatus.  At least they are kind captors.

Though not in an aquarium, I am in a cage of another kind.  The Guard(ian)s do frequently take me out to "squish" me.  They aren't very literal in their usage of the term, but I'll not push my luck.  Oftentimes, they sit with me in the wooden chair.  As friction gathers in it's joints, it emits some kind of sleeping gas.  I typically doze off before I am able to fully analyze my surroundings.  When I awake, I find the Guard(ian) in charge is asleep, as well.  The vapors have a particularly strong effect on the male.

I'm not sure where the two younger male creatures are.  I am sure they are behind the curtain orchestrating this whole mess.  The assurance of not risking being stepped on curbs my curiosity as to their whereabouts.  Oddly, the lack of chaos takes me out of my element a bit.  Their "kisses" (the showing of affection by touching their eating apparatus to my cranium) does make them a bit endearing.  I'll re-evaluate the status of our relationship once this fiasco comes to a calm.

The Guard(ian)s are joined by others of like size, but significantly increased intelligence.  They often poke and prod to analyze the inner workings of my body.  I've sent a distress signal more than once, but my comrades must be in like situations and unable to intervene.  No worries.  I am not technically in distress, but the language barrier makes it difficult to tell them, "I'm on the verge of rabbit punching you if you come at me with one more needle."  (Note to self:  Store that for when cognitive capabilities and increased speaking functions coincide).  Not to mention, intermittently blaring said signals during their slumber time satiates a selfish giggle.

I've not much more time.  The female is stirring. 

The purpose of this communication is to assure my safety to those reading this.  They typically keep to a regular feeding schedule, the sleeping conditions are tolerable, they tend to my soilings with relative haste and all the beings around me smile.  A lot.  It's kind of troubling.  Nevertheless, there are rumors that they are enhancing my cardiovascular capabilities.  Silly mortals.  They'll never be able to harness the power of the ...

Wait...

What was that?

Signing off...

Here for the long haul, I guess...

This is a short post… just to update y’all on the latest in Ellie’s world.  Because of all the reasons listed in the last post, the docs came in today to tell us that a trach is necessary to support Ellie’s airway.  BALLS!  (that’s my swear word of choice, in case you didn’t know).  So we’re hanging out for a while yet.  She has 4 tests/procedures that should all happen next week.  On Monday, she’ll get the video swallow scope done.  Next is a sleep study with oxygen titration to see what she’ll need a ventilator set to during the night (which we’ll have at home).  And at some point next week, she’ll be sedated again to put in the trach and the g tube.  Big week for our baby girl.  Blah!  On the plus side, we did find out today that the impedance probe showed very little reflux (only 4 tiny episodes in 24 hours)… which is great.  That means that she is NOT aspirating and that they will not be doing the nissen fundoplication (where they wrap part of the stomach around the bottom of the esophagus to prevent reflux).  Bonus… that was good news. 

Once Ellie is through these procedures, we’ll be transferred to the pulmonary floor so that she can be on a ventilator (hopefully not 24-7).  They’ll have to train us on trach care and the use of the ventilator, of course… and once we’re fluent in these new languages, we should be able to go home.  Dr. Hirsch feels like once we stabilize Ellie’s airway, the options for surgical repair of her heart are more likely to be successful.  He told us straight up that there was likely no way to do a 2-ventricle repair on Ellie.  She’ll either have a heart that functions as a single ventricle (where all of her unoxygenated blood bypasses her heart and flows into her pulmonary arteries to her lungs and her heart then just pumps oxygenated blood to her body) or she’ll have a 1.5 ventricle repair (where only the blood from above the heart… think arms and head… flows into the pulmonary arteries and the blood from below the heart… think organs, torso, legs… still enters the heart to be pumped to the lungs).  A lot of mumbo jumbo, I know.  But without a stable airway, the pulmonary hypertension that Ellie has right now would make either operation likely to fail.  I’m pretty terrified of the trach… but hey, I was terrified of the NG tube before it was a part of her “normal” 2 months ago.  If the trach is what she needs to breathe like you and I… then the trach is what she’ll get.  Dr. Hirsch did say that if we’re not comfortable with trach care, we could stay on the 3^rd floor for a few weeks until he does another heart cath in preparation for surgery.  Uhhh… we’ll learn and get comfortable, I promise!  So the December 29^th surgery date is a no go at this point.  I’m sure we’ll have a surgery plan after Tuesday’s surgical conference… not sure if we’ll have a date then, though.  From what I understand, we’re no longer looking at just one open heart surgery.  It’ll likely be a series of surgeries before Ellie is all fixed up.  Bummer.  But I’m absolutely certain that we’re in the best place we could possibly be right now and she’s getting the care she needs.  Did I mention how impressed I am with Ellie’s ability to turn a 1-hour appointment into an extended hospital stay?  Today is our 10^th day at Cincinnati Children’s and it looks like we’ll have at least another week here before we can go home… and that’s even temporary.  Let’s hope that at this time next year (or 6 months from now) we can look back and say, “Whew, glad we’re through with the in-and-out hospital routine”, right??

How cool is this??  Here is a picture of Ellie's brain from her MRI on Wednesday... it's fantastical!

Bug bug sleeping.  Seriously, this is how she sleeps.  I know it's because she's trying to keep her airway open... I pretend like she's practicing her back bends, though.

Out of CICU!

Last night, B went home to check on everything there and hopefully get a good night of sleep.  It can’t be easy to sleep in this environment and get up to do a physically demanding job in the morning.  I followed him out to gather laundry out of the machines before heading back to the CICU.  When I got back in Ellie’s room, the nurse told me that they’d found a blood clot in her left femoral artery (in her leg) when they’d done the ultrasound earlier.  They were putting her on a blood thinner to dissolve it.  I guess this is pretty common after a heart cath.

I tried to sleep, but the CICU feels less like home than our last room – understandably so.  We turned on the lullaby channel to drown out the sounds of monitors beeping and alarming.  When I got up a little before 5am, the nurse was holding a bink in Ellie’s mouth and said that she seemed really hungry.  She was smacking her lips like crazy and was restless.  Looking at the monitor, her breathing, blood pressure and heart rate were up.  The nurse said she'd taken her temp and it was up at 101F as well.  I immediately said, “She’s storming… let’s get some ice”.  I think the nurse felt awful because she’d been trying to soothe her for 2 hours and didn’t recognize this as a storm.  In this unit, they see autonomic storms caused by traumatic brain injuries (which is usually the cause of storms).  The storms she was used to seeing were much more severe than Ellie’s, which is why she wasn’t more concerned about her activities.  On the beta blocker (propranolol), Ellie’s storms are muted, but the cardiologist said they can still occur and we shouldn’t be surprised to see them after or during stressful situations.  I’d say yesterday was a stressful situation for our bug.  After trying the ice on Ellie, it wasn’t too effective in calming her down – that’s a first.  They gave her the rescue drug, Ativan, to calm the storm.  She was able to calm down considerably.  Now we know that stress can throw her back into storms, so we’ll need to be very diligent about making sure that all of her caregivers know what Ellie looks like in the midst of a storm and what to look for.  After surgery, it’ll be critical to treat the storms as they brew instead of hours into them.  Even at the peak of this storm, she was nowhere near the peak of her storms before she was on beta blockers.  In morning rounds, the resident made sure everyone was aware of what Ellie’s storming symptoms look like... she's supposed to be treated with the rescue drug for any storm lasting 30 minutes or more (they usually last 3-6 hours).

Ellie is super tired here, so she looks a little out of it. 

She's like, "Mom, can you tell them to stop putting things in my nose, please?".

Shortly after rounds, Dr. Hirsch (who did the cath yesterday), came in to talk with me.  He ordered another ultrasound on Ellie’s veins and arteries because they were not able to feel her pulse in her feet (and her feet are cold).  They used a Doppler to locate the clot they’d found last night, but couldn’t locate it with the Doppler – so another ultrasound is necessary.  He then came over and talked to me about his concerns.  He said that Ellie had a lot working against her in regards to her airway… or rather, “almost anything that could impact her airway is impacting her airway”.  She has Down syndrome, making her tongue unusually large where it can obstruct her airway.  Down syndrome can also come with a “floppy” trachea… a.k.a. tracheomalacia.  She has a congenital heart defect, which contributes to pulmonary hypertension.  She has autonomic storming, which throws the rhythm of her breathing off entirely.  ENT found that she has brachiocephalic stenosis, which means that the artery that runs along the trachea puts pressure on the trachea and contributes to the collapsing of the airway (kind of like a big, heavy hose would sag the sides of an inflatable pool as you filled it).  Finally, her sleep study showed that she has severe obstructive sleep apnea, which physically obstructs the airway.  So… there are a lot of things at play here and an unstable airway contributes to pulmonary hypertension… which in turn, is detrimental to the type of repair they’ll need to do for Ellie’s heart.  UGH!  Can you see how it's all related and we're not sure which "evil" to tackle first??  Dr. Hirsch explained that there are several options to stabilize her airway, the most invasive being a tracheostomy (where there is an opening on her throat that leads to her airway).  There are less-invasive methods (which we’re rooting for, of course)… but he wanted to prepare me for what was possible.  He ordered another test (an airway impedance probe) to see if she’s aspirating – that’ll be a 24-hour test.  They also ordered a video swallow test from speech pathology.  I think that’ll happen today as well.  I’ve not read up on either of these yet, so excuse me for being a little clueless at this point.  We also found out that pulmonology is planning another sleep study on Ellie, this time with titrated oxygen supplementation.  This way, maybe they can come up with a regimen that keeps Ellie's oxygen saturation stable during sleep by simple putting her on a machine to assist her breathing at night.  That doesn't sound too bad.  I don't know if they'll get this test done this week, though.  We'll see.

Dr. Hirsch also said we’d likely need to do a G tube before heart surgery, as well.  A G tube is similar to Ellie’s NG tube, in that it’s a tube that goes into her stomach to feed her.  The difference here is that a G tube will have a port on her belly instead of coming up and out of her nose.  This doesn’t scare me, really.  Not the insertion, itself.  I’m worried about the implications of an opening to the gut a few centimeters from where an incision would be for open-heart surgery, of course… but maybe we’re looking at a different type of surgical incision than before.  I won’t know until after the surgical conference next week.  Hmmmm… I wasn’t ready to hear all of that today.  I’m ready to go back to the cardiac floor, recover, and head home.  However, I know that we’re in the right place with the right medical professionals on our side… so I’ll patiently wait to see what the next move will be. 

While this is a lot to digest, again, I sent B a text this morning saying, “Praise God that we’re only dealing with what we deal with every day.  The ICU is a wake-up call for how incredibly fortunate we are.  I just heard an AED machine in the room next to us say ‘stand clear’, then ‘shock administered’.  Ugh!  Praise God that our reality is not like THAT”.  The kiddo next door doesn’t look any bigger than our bug.  The one in the other adjacent room has at least twice as much intervention and has been here since he was born just 11 days ago.  As I meet these parents in the lounge, I ask their kid's name and tell them I'll be praying for them.  I hope this gives them a glimmer of hope.  Some of these babies are only as big as Ellie and are waiting on heart transplants.  Ick!  Even on an emotional morning with not-so-great news, I have to put this into context and realize that Ellie’s worst days aren’t all that bad.

In other news:  I finally figured out which Sunday school song was Ellie’s.  Okay… I know I haven’t written about this before, but it’s been on my mind since she was born.  With our boys, I had a Sunday school song (from when I was little) that has always been “theirs”.  I don’t know why… I just did this, and it kind of became the lullaby that I would sing to them.  I wrote about the songs in their baby books, and with each boy, that song became so familiar and soothing to them.  Okay, back to present… I’ve been trying to find a song for Ellie for all of her 3 months.  Nothing seemed to really click.  I tried singing “Apple Red Happiness” for a while, but it never seemed to fit exactly right.  Over the weekend, I sat rocking her and suddenly “He’s Still Working on Me” came to my mind and I sang it to her.  When I got to the first line of the 2^nd verse, I choked up a bit because it was so perfect.  I hadn’t sang this song in years… and as the words started pouring out from whatever archived folder they were stored in, I knew that THIS was Ellie’s song.  She’s probably heard it about a hundred times since this weekend (What?  I have to make up for those months when she didn’t yet have a song).  So for those of you that don’t have a mind that’s cluttered with a million songs from your childhood, here is how Ellie’s song goes:

 

He’s still working on me to make me what I ought to be
It took Him just a week to make the moon & the stars
The sun & the Earth & Jupiter & Mars
How loving and patient He must be, ‘cause He’s still working on me.

There really ought to be a sign upon my heart,
“Don’t judge me now, there’s an unfinished part”
But I’ll be perfect, just according to His plan
Fashioned by the Master’s loving hands.

He’s still working on me to make me what I ought to be
It took Him just a week to make the moon and the stars
The sun & the Earth & Jupiter & Mars

How loving and patient He must be, ‘cause He’s still working on me.

Perfect, right?  I thought so.  We’ve now moved back to the regular cardiac floor… no more CICU!  So now I’m back to a room with a desk that I can work from, a bed that’s big enough for Brandon and I (I mean… it’s the size of a twin mattress… but relatively, that’s big for a hospital room), we can have our cooler and snacks in this room… and it’s quiet… plus, we know the staff over here now, and it helps it feel a little more like home.  The neuro team came in to chat with me and showed me the MRI's pictures of Ellie’s brain… everything looks pretty normal – nothing alarming there at all.  So, that’s good news – nothing crazy going on upstairs.  We need to figure out this airway deal yet, so that’s the next hurdle.  Until next time… here are some Christmas trees that are decorated in the corridor.  The Cardiac team put together the Wizard of Oz one (appropriately featuring the tin man) and... I'm not sure who decorated the Frozen tree... but it's awesome.  Even unlit it's awesome, although my picture does it no justice at all.

 

Cardiology's Christmas tree

Frozen Christmas tree (with ice castle)

Testing today...

Today was a very big day for Ellie.  Around 11:30am, they came in to walk us down to the cardiac cath lab to start testing.  We had to hand our sweet baby over to the anesthesiologist (which is incredibly hard) to start her day of intense testing.  She was intubated and sedated for the 4 hours of testing.  First, she had a bronchoscopy (where they scope her airway to look for obstructions).  As soon as that was done, they started the heart cath.  During this procedure, they go into a vein in her groin and the catheter runs all the way up into the chambers of Ellie’s heart and the veins and arteries connected to her heart.  Once through the cath, Ellie would head into the MRI lab for a brain MRI.  Whew!

The scope went great and they did not find any abnormal obstructions in Ellie’s airway.  She had some obstruction and she has what is described as a “floppy” trachea… both of which are common in babies with Down syndrome.  We expected this.    Next came the heart cath.  After the cath, the doctor brought us into a private room to discuss his findings.  He showed us images of Ellie’s right and left ventricles (below) and showed us that the right ventricle is considerably smaller than the left… considerably smaller than it needed to be, really.  He couldn’t for sure say if it was just underdeveloped or if it just had so much extra muscle around the ventricle that was making the holding tank so small.  Either way, it’s small.  He said the surgery team would have to discuss the plan for repairing this.  He also showed us that Ellie has 2 large holes in the atrial septum and a very large hole in the ventricular septum.  This was not the news we were hoping to hear, that’s for sure.  He also said that Ellie’s body is already starting to restrict the blood flow from her heart to her lungs.  This is the body’s way of protecting the lungs when the pressure in the pulmonary arteries is so high.  This isn’t necessarily a good thing because one of the treatment options is to band the pulmonary arteries to reduce the pressure… Ellie’s body is already doing this… at 3 months.  I won’t make any other assumptions or predictions, though, because I can drive myself crazy.  I’ll have to wait until the cardiac team has their Tuesday surgical conference where they’ll discuss Ellie’s case and determine the best option for her.  From the looks of it, a 2 ventricle repair looks unlikely, but I’m not losing hope for that.  An interesting fact:  Dr. Hirsch (the one who did the heart cath) said that the pulmonary hypertension she’s experiencing could be the culprit for what throws Ellie into the autonomic storms she experiences. 

Ellie was back in her room before we’d hear back on the MRI.  We got to finally see her again around 5:30pm (after turning her over to the team at 11:30am).  I cried when I saw her.  She just didn’t look like my sweet baby.  She was still intubated and her arms were in restraints.  Someone was in the room doing an ultrasound on her veins and arteries to look for blood clots.  She was still coming out of sedation, so she looked up at me, but with glossed-over eyes.  I leaned into my Dad and cried… it is hard seeing your baby like that.  I’m sure it was hard for Mom and Dad to see their grandbaby like that, too.  I gave B a big hug and prayed for our sweet girl.  They were giving her some more sedation medicine so that they could get her tube out… which would be great, but they told us it’d be an hour, so we ordered food and headed out to the family area to eat (we can’t eat in the ICU, of course).  On the way there, we met up with our cardiologist from the cardiac unit and discussed other test results.  She said that the MRI was clear and there weren’t any abnormalities that might be causing the storms there.  Good news!  She said there were some things they saw, but they were likely more related to Down syndrome than anything else.  We’d know more when we talked to someone tomorrow.  She said the sleep study results came back finally and that Ellie has severe obstructive sleep apnea.  We’re not sure what this means, treatment wise, for our home routine, but we’ll work that out before we go home.  For tonight, Ellie will be sleeping on an incline with a shoulder roll behind her (to open her airway more) and she’ll be on blended air to help keep her pulse ox up.  The doc said that sleep apnea could also be the culprit for the storms she’s been having.  That would make sense since the storms usually happened at night.  Hmmm.  We had a lot of new information and a lot to digest, so we went back into the family room to get some dinner.

While in that room, we were talking in depth with other parents eating there… they all had kiddos in CICU.  One man (who was dressed in Air Force fatigues), shared the story of his little girl.  She was 4 months old and they’ve been in the hospital for 3 and a half months.  Ugh!  This poor guy!  When their baby was born, they were told that either she wouldn’t survive because of her heart defect, or that she’d need a transplant at some point.  She’s been through several surgeries already.  She had open heart surgery last week and coded this week.  When they did CPR on her in the hospital, the pressure on her newly-mended sternum split some of her metal sutures.  My heart breaks for them.  So while we’re inundated with a lot of new (and scary) stuff right now, I was humbled by how much easier our path is than some others.  So tonight, I’m thankful for all of you who lifted Ellie up in prayers and carried her through all of these procedures.  She came through like a champ.  Tonight I ask that you please pray for the other families in this unit (or in any hospital room anywhere).  Some of these parents are dealing with some unimaginable obstacles.  We love you and know that your prayers have done so much for our sweet bug… I know that some of these families need prayer, too.  And I’m not sure if they all have the support system that we do. 

God, keep these babies in your mighty hands and heal their bodies.  You are the Great Physician and You work miracles every day.  We trust You and know that You are guiding the hands of these doctors and nurses and surgeons every single day.  In Jesus’ name, Amen!

Here are some pictures for you.  Oh yeah, and our baby girl is 3 months old today.  I don’t have one of those cute little shirts to put on her… sorry.  Thank you again, for following along.

Helping Daddy root on the Browns on Sunday. 

And sucking her thumb (now that it's not in a mitten, finally)

Lance & Kaleb helped Grandma & Grandpa decorate for Christmas.  I'm shocked that Kaleb isn't terrified of this Santa.  Maybe we have hope for a good picture this year!?

My sisters brought the boys to Cincinnati so we could all go to the zoo and see the Festival of Lights on Saturday.

 

On Friday, the boys got to help pick out a HUGE Christmas tree for Grandma & Grandpa's house.

Our pretty little Ellie before her sleep study on Monday night.

Lots of leads and such... ready for a sleep study.

The boys watching shows and eating snacks in Tracy & Josh's office.

Our bug coming out of sedation today - after her tube was removed.

 Ellie & Daddy.

 

Ellie & Mommy.

Such a little peanut with so many monitors going around her.

 Ugh... can she be any more beautiful, really?? 

A picture of her heart cath.  I know this looks like nothing to most of you... they had to show me what everything was, too.  The top picture is of her left ventricle (looking just fine), the bottom is her right ventricle (pretty tiny).

 

 Sorry these are so out of order.  This was Ellie just out of the MRI. 

She's intubated here... and very out of it.

Ellie on Tuesday... checking out her pretty new quilt.

 The boys eating lunch at Aunt Emily's house.  Missing these little turkeys so much.