Surgery updates...

So, I will be updating this post as we go through today (as often as I can).  I know we have so many prayer warriors who will want to keep tabs on our little bug.  All updates will be within this one post... I'll just post a time and update below as I have updates to post.  Thank you so much for your thoughts and prayers.  We sure felt an amazing outpouring of love yesterday.  God bless you all!

5:10am:  Ellie was awake-ish and cuddling with me

In my Team Ellie Bug shirt giving her squishies and singing songs

So tired.

She's so chunky that when I moved her head, I made an extra roll of skin on her shoulder :)

Look at all that chunkiness on our sweet girl!

8:30am:  The anesthesia team came up to get ready to transport Ellie to the OR.  It took a little while because we had to wait for the blended air mobile and portable monitors to travel.  Ellie was in a good mood while we waited on the team, but as soon as she heard all the people gathering around her, she was really upset.  I don't know if she connects the bustling to an upcoming surgery or not.  But she wasn't excited, and that broke my heart.  

Daddy giving Ellie a pep talk.

They gave her some medicine to calm her down and we were on our way.  We boarded the elevator to head down to the 3rd floor (surgical floor).  As soon as the elevator doors opened, the hospital went dark.  YIKES!  Something (likely construction) caused the entire hospital to lose power.  Not what I wanted as we walked to the OR.  Fortunately, the backup generators kicked in right away and lit the hallways.  Double bonus:  the elevator doors were open.  If the power went out 5 seconds earlier, we would have been stuck in an elevator.  Whew!  Here are some pictures of our sweet bug during transport.  She went into the OR at 8:59am.

The anesthesia team getting Ellie comfortable before transport.  

You can barely see B and I.  I'm leaning over the head of her bed... 

B is standing talking to the anesthesiologist. 

Ellie looking pretty happy as we head to the elevators.

Just getting to the OR - Ellie still pretty alert.

We're hanging out in a private room off of the surgical waiting area... which is nice.  I'll keep updating as we hear back from the team.  At this point, they're still prepping Ellie.  We will hear back when the actually start surgery.  They need to start anesthesia first, then insert an IV and the two lines (arterial and central), they'll intubate her and block her trach opening, they'll scope her trachea and insert a probe to do an echocardiogram of her heart through her esophagus.  I'll update when I know more.

10:55am:  Actually surgery just started.  This should take about 3 hours before they start the recovery process.  Prayers, prayers!

1:11pm:  Dr. Morales just left.  He said that the banding went better than he anticipated.  BEST.  NEWS.  EVER.  Ellie was extraordinary in a great way today.  Before surgery, the pressure in her pulmonary arteries was really high (pressure and resistance are different).  With the band, the pressure was decreased to 1/3 of what it was previously.  He was hoping to to get that pressure down to 1/2 of what it was and is surprised that she responded so well.  High five, Ellie, for being extraordinary in the best possible way today!  From here she'll go to the CICU for recovery and we'll wait about 2 months for another heart cath to see how the pulmonary vascular resistance has changed with the trach and banding.  He doesn't anticipate that it'll be perfect then, but if her PVR has dropped, that'll be a a great sign that we're on our way to surgical repairs.  He also said that the echo they did today (through her esophagus) showed that the right ventricle is maybe a little larger than they thought from the sedated echo before Thanksgiving.  This is also great news.  Thank you for all of your prayers today - we got our miracle!!!  Still a long road to travel yet, but this is the best possible news we could have gotten today.

4:57pm:  Our sweet girl is resting in her CICU room.  She's hooked up to lots of stuff... but doing well.  She's nice and pink - not blue at all.  Below are a few images for ya.  I took some pictures of what she looks like, but I'm not really comfortable sharing them with the world.  I will, however, post a picture once she's awake and extubated in a few days.  Here is her room with all of the crazy busyness going on, a new chest x-ray showing her metal sutures (and a few other things), and her heart bead.  They do something called "Beads of Courage" here... a very cool program.  As Ellie goes through test and procedures, she "earns" beads.  Right now, she has a total of 142 glass beads.  We've only been collecting them during this hospital stay.  She gets beads for things like overnight stays, CICU admissions, surgeries, vent support, new lines placed, tests done, etc.  Today she earned her first heart surgery bead... a BIG deal!  Someday, when she's much older, I hope to take these beads and make them into jewelry for her.  Maybe she'll have a yellow necklace (inpatient stay beads) with a fish charm (for traveling more than 50 miles for treatment)... or a purple (for new medications) & aqua (tube placements) bracelet.  Might sound kind of lame... but I think they'll be badges of honor someday that she can wear with pride.  Love this little bug to the moon and back and couldn't be more thankful for the news post-op today.  PRAISE GOD!!

Ellie's CICU set up

Post-op chest x-ray from today

First bead of courage for heart surgery

This picture simplifies the heart band well.  Ellie's heart isn't divided into red/blue like this one is, but you can see the pulmonary arteries (blue) that branch off to the lungs and where the band is, anatomically.  Seems simple, huh?

... now we wait.  We wait a few months for Ellie's body to adjust to this mechanical restriction of blood flow and pray that the reduced pressure in her pulmonary arteries will reduce the pulmonary vascular resistance and open the door for the next surgeries.  Again - PRAISE GOD!!  And now... I'm completely spent emotionally and physically for today.  Lame for New Years Eve, right?

I can't end this post without giving a big shout out to all who have been keeping up with Ellie and sharing this blog.  I don't ever obsess about hits to the blog, but in the 24 hours after I published our last post, we had over 4,000 hits on the site.  To me, that's 4,000 prayers being lifted for our sweet girl.  Before, a high-volume day might have brought 500-600 hits... still amazing, but nothing compared to 4,000.  Again, I don't obsess about that at all... I'd still post if I was the only one reading, but it means the world to me that you are all in this journey with us... you're sharing our story and lifting up prayers for our baby.  I couldn't be more grateful.  I know for sure that you all had a part in the miracle performed on Ellie's arteries.  We love you so very much!

When being extraordinary is a bad thing…

We’ve been mentally and emotionally preparing ourselves for Ellie’s first heart surgery.  We’ve been told how much of a difference the banding of the pulmonary arteries can make.  We’ve been preparing ourselves for how she’d look (which is always a hard thing) and for possible risks and such associated with the surgery.  We know that Ellie has plenty working against her here, and this whole time we’ve been so hopeful that the banding (and trach) would be the surgeries that would turn things around for her.  We’re still very hopeful of this, but our world has been rocked, for sure.

Yesterday morning, Dr. Morales (our surgeon) came into our CICU room to chat with me about Ellie’s upcoming surgery.  I made a list of questions and called B and my parents to see if they had any additional questions to add to the list so that I was astute and well prepared for this meeting.  This poor man has the impossible job of delivering hard facts and heartbreaking realities, though.  He also saves lives, by the grace of God… but this part of his job has to be awful.

He said that Ellie was an exceptional case… an exceptionally difficult case.  He reviewed that she’d be a 1-ventricle repair, but told me that single ventricle repairs were incredibly risky in kids with trisomy 21 (they always say trisomy 21 here instead of Down syndrome).  Because of some of Ellie’s physical characteristics and restrictions, a very complicated surgical journey becomes MUCH more complicated and more likely to fail.  Most of the worry he has concerns Ellie’s extremely high pulmonary vascular resistance (PVR), which is the high pressure in the arteries to her lungs.  He said that high PVR isn’t terribly uncommon in kids with Down syndrome, but the thickening of the arterial walls usually starts, at the earliest, around 10 months.  This thickening is usually driven by airway instability in other kiddos.  Ellie managed to thicken her arterial walls and restrict her blood flow between two and three months of age.  This is not something our surgeon had seen before.  He's one of the top surgeons in the world, and this is new.  Regarding her future surgeries, he said, “It doesn’t meant it can’t be done… and it doesn’t mean this has never been done… but I want you to know that the risk is much higher than normal here and the outcome is less likely to have the effects we want it to have”.

The only way to measure PVR is through a heart catheterization, so there was no way of knowing that we were dealing with this before she went in for the cath on December 3^rd.  Since then, the surgical and cardiac teams have been discussing her case to determine a reasonable course of action for Ellie.  From here, we know that banding is the first step.  If the banding isn’t wildly successful, Ellie doesn’t have other options for surgery.  She’s not eligible for the Glenn or Fontan procedures (which bypass her heart to dump her un-oxygenated blood into her pulmonary arteries).  She’s not eligible for a transplant, either.  If Ellie is not able to relax the pressure in her pulmonary arteries… she will have to live with the very broken heart she was born with.  The outlook down that road is very grim.  Unthinkably grim.  My-heart-has-been-ripped-out-and-stomped-on kind of grim.  Ugh.

So what I’m saying here… this banding HAS to be the answer.  There’s no other option.  By the grace of God, this little girl HAS to respond perfectly to this procedure in order to have any hope for a future.  Heavy stuff, I know.  Now, to the nitty gritty of the procedure…

The surgery is set to start at 8am tomorrow morning.  The surgery itself only takes 2-3 hours, but with prep (about an hour and a half) and recovery (about 2 hours), it’ll likely be 7 hours or so between the time we kiss her in the OR and the time we see her again back up in the CICU.  We will get updates through the day.  This surgery, itself, isn’t incredibly risky because they’re not cutting into heart tissue.  But any time they open up a sternum, there is risk, of course.  During the prep period, they’ll put in a central line (an IV like tube that goes in her neck and down to her heart to measure pressures and such).  They’ll also put in an arterial line in her arm (another tube that taps into an artery in her arm and constantly and accurately measures blood pressure).  They'll remove her trach and intubate her (hate this).  She’ll be getting chest tubes to help drain off excess fluids, too.  She'll be extubated within the first 24 hours and her trach will be put back in.  The chest tubes will come out two or three days post-op.  The central and arterial lines will stay in until she leaves the CICU.  The band itself will be adjusted in the OR to restrict Ellie’s pulmonary arteries enough to relieve some pressure, but not so much that she’s blue.  We were warned that she may be pretty blue after surgery.  There is an acceptable level of blueness here… and they’ll have to adjust the band so that she’s not SO blue that it causes damage to her brain and organs and other cells.  Eeeek!  I asked about the material that the band is made of and how it grows with Ellie.  Dr. Morales said, “It doesn’t.  It’ll need to be readjusted as she grows.”

After surgery, she’ll need to recover in the CICU for a week or two until she balances out her vitals.  Once stable, we’ll be transferred to the TCC (transitional care center) so that we can start our intense trach training.  Dr. Morales thinks we’ll be able to go home with her after we’ve put in our time in the TCC (likely 6-8 weeks).  Then… it’s a waiting game.  We’ll be watching for signs that the PA band is doing its job (still need to get a grasp of what those signs are), and she’ll be back to get heart catheterizations again to see if her PVR has dropped.  If this happens (and we pray to God it does… and does so relatively quickly), then we can move on to surgical options.

Dr. Morales and the current attending cardiologist (didn’t catch his name, but he’s British) both talked to me about how incredibly risky the following surgeries will be for Ellie.  Because she was such an over achiever in protecting her lungs, giving her high PVR, and because she has a nice little trifecta of risks (Down syndrome, high PVR, unstable airway), the risks involved in the next surgeries are much higher than normal.  They so kindly said, the risk of complications here (including mortality) is quite high.  The risk of not doing any surgeries is absolutely fatal… we have no idea how long her heart will hold out with just the banding.  To reinforce the importance of the PA band being successful... if it does not lower the PVR, she's not eligible for a Glenn, she's not eligible for a Fontan, she's not eligible for a transplant.

So our baby girl has to be strong… has to respond to the banding… and by golly, has to stop trying to be so darn extraordinary.  I do NOT like hearing a world class surgeon say, “she’s an exceptionally complex case”.  This is NOT where we want to be exceptional, Ellie.  This is not where we want to pave new ground.  This is where we want to be ordinary and run-of-the-mill.  Let’s stop being extraordinary for a while, okay??

Pray for our baby girl.  Pray for God to lead the surgeon’s hand.  Pray for a miracle.  Pray for strength for her and for us.  We can’t walk this road alone, we need prayer.  We need a miracle… and I know those happen every single day.  Let’s let the last day of 2014 be the day that changes everything (for the better) for our sweet girl.  Let this make all the difference and let 2015 be a year full of hope and promise for Ellie.  By golly, this little fighter deserves a break!

Christmas joy

Well, I lied a bit in my last post.  Ellie did not spend Christmas in the CICU with her buddy, Chance.  Chance was able to move into the step down unit on Christmas Eve – celebrations!  Her friend Kendale was allowed to go home on Christmas… what a wonderful Christmas miracle!  Ellie did still spend Christmas in the CICU, but she had an adorable Christmas outfit to do so in, at least.

Ellie in her Christmas outfit that Daddy picked out.

Ellie had an odd week.  She is in heart failure now, which was the goal.  I know this… but it’s hard to watch.  She’s back to being very congested and constantly sweaty.  So sweaty that she’s soaking all of her clothes… so she’s now just wearing a hair bow (can’t go without that).  Her oxygen saturation is fluctuating, but higher than it had been in a while.  As I write this, she’s sitting in the mid 90’s.  She’s bouncing from 100% to 75%.  Her breathing rate and heart rate have increased from where they were the past few days, so it’s hard for me to establish a baseline for her.  Her liver is enlarged again, although it seems to have gone down a bit today compared to yesterday.  And she’s storming regularly still… even with increased meds.  This morning, she had two storms in six hours.  Ugh.  The silver lining… she’s scheduled to have her pulmonary arteries banded on Wednesday.  So, it’s a good thing that she’s over-circulating blood into her lungs… this means that the vascular resistance in her pulmonary arteries is down and she’ll be more likely to keep her oxygen saturation in a safe range after they put the band in place.  If she still restricts these arteries, they’ll give her medication to relax them.  So she shouldn’t get too blue, really.  But it is scary that there is an acceptable level of “blueness” post-op.  I’ll write another post about this shortly (maybe post it tomorrow)… I’m still processing some of what I talked with the surgeon about today… not ready to unload that yet.  Here are a few sweet pictures of her to remind us of just how wonderful our busted up little mess is!

Ummm... can she be any more adorable?  Sweet smiles.

 A sleepy bug showing off those pretty lashes.

Let’s rewind on how our Christmas went.  Christmas Eve, Brandon was working, but Mom & Dad came down to bring the boys to us.  We spent several hours together and Mom & Dad got to see Ellie (in her Christmas tutu) for a while.  Ellie started storming while they were here, though… so I think it was a harder visit than I would have hoped for.  Mom saw Ellie get Ativan, too… which is never a fun thing.  The boys were happy through the day and excited to “rent” more movies at the Ronald McDonald House (RMH).  B was off work early and brought some Christmas gifts with him.  I was super emotional opening gifts.  This is never how anyone ever wants to spend Christmas.  However, I have never, ever felt as blessed as I have this Christmas.  I was suddenly thankful for all of the things that were on the back burner of my mind in previous Christmases.  I was thankful for our health… I was thankful for our home (and home away from home).  I was thankful for the love and support that has been poured out on us lately.  We knew we always had support of family and friends… but until you’re in a tight spot, you don’t realize how freely others give of themselves to make your burden a little lighter.  It’s truly remarkable and for the first time, the Christmas spirit was alive and well for what it really SHOULD always be about (and not so much about gifts and looking nice and rushing around to 5 different places).  How refreshing.  This made me even more emotional, though. Of course, we missed so much of our extended family and church friends we usually get to see on Christmas, but it was nice to simplify the day and focus on the meaning of it, more.

Mom holding Ellie on Christmas Eve.

We had an amazing Christmas Eve dinner at the RMH and Santa made an appearance after dinner.  He called us up by room and gave us a sack of Christmas gifts to bring back to our room.  The boys were so excited and we let them open one gift that night and save the rest for Christmas morning.  They were in awe that Santa had personally delivered their sack of gifts.  Christmas morning was so exciting, for us and the boys.  They were thrilled with the gifts from Santa and loved lounging around and eating breakfast in their Christmas jammies.  We had lots of snuggle time and play time to enjoy.  Around lunch time, Grandma and Grandpa Maier came down to spend Christmas with us.  B met them over at the hospital so that they could go up and see Ellie, then headed over to the RMH to meet up with me and the boys.  The boys were so excited to see them.  Grandma Maier is the best at capturing everything on camera… thank goodness for that!  It was nice to have some calm, uninterrupted time with them on Christmas.  We opened gifts and played, then went back over to the hospital to eat dinner in the cafeteria.  Denny & Sheryl watched the boys for us in the playroom of RMH while Brandon and I came back over to the hospital to work on trach care with the nurses.  What a great way to enjoy Christmas.  Look at all of these sweet pics from Christmas day.

The boys rushed over to see Santa & Mrs. Claus

Spiderman (Lance) shooting webs 

Hulk (Kaleb) - he's smashing here.

Bug and some of her gifts

What a sweet smile!

The boys playing in the play room at RMH

Grandma Maier and Ellie bug on Christmas

Daddy & bug bug

Grandma Maier with Hulk and Spiderman

Grandpa Maier showing Kaleb how to play some tunes

Friday was a great day when we got to enjoy some time together with the boys and Saturday, while Brandon worked, I spent the day alone with the boys.  They were very ornery for me.  Yesterday morning (Sunday), I left Ellie’s room after spending the night with her.  We had an okay night (no storming).  I went back to the RMH to get ready for the Schroer Christmas party and live stream our church service.  My family would be down around lunch time.  Once we were ready, we met everyone over at the hospital.  I was excited to see so many Team Ellie Bug shirts!  Adorable!  Mom and Dad went up with me to see Ellie quick (since only parents and grandparents are allowed in the CICU) while B lead everyone else back to the RMH.  Ellie was sleepy and the nurse came in and casually said, “we just gave her a sedative and a paralytic so that we could get an arterial blood gas on her… so she’s sleepy, but she’s coming out of it now”.  WHAT??  My blood boiled a little.  You gave her a drug to paralyze her while I was gone and didn’t think to give me a call or anything??  Awesome.  When we were in 6Central (the cardiac step-down unit), the resident had called my cell phone while we were out for a bit to ask if it was okay to give her Tylenol.  Now we’re just pumping her with paralytics and not calling first??  Not cool.  I understand that they had to do this to get the arterial blood draw and that they needed this blood draw to get a clear idea of how her heart is functioning before her surgery… but a call… a call would have been nice.  Grrr!  End rant.  Ellie did wake up for us and look around a little.  Mom and Dad were happy to see her like this because when they saw her on Christmas Eve, she was storming and it was the first time they’d seen her so uncomfortable.  To see a calm, happy Ellie was a relief.  For that, I’m glad!

We left her room and met the rest of the Schroer crew over at the RMH and opened gifts and enjoyed some pizza together.  We let the kiddos play together for a while and took some pictures of all of us in our Team Ellie Bug shirts.  Love these pictures!  It was so wonderful to see everyone and spend time in their company.  The boys were excited to see all of their “friends” (aka cousins).  We are so touched that our families traveled so far south (on Christmas day & on Sunday) – taking up an entire day – just to bring Christmas down to us at the RMH.  What a blessing they all are.  We feel so very blessed.  Thank you so much for your continued prayers… we’ll need them more in the coming weeks than we’ve ever needed them before.  Thank you, prayer warriors!

The Schroer family - Christmas at the RMH.  

We did NOT mean to make a heart shape with ourselves... 

but we like that it turned out that way.

 Family again - this time we got the "Believe" and "RMH Charities" signs in the background.

Georgia & Audrey displaying the Team Ellie Bug shirts.  

If you'd like to order one, contact Tracy - email: tracy@6sproductsllc.com

Christmas in the CICU this year

It’s been a week since I’ve posted an update, but fortunately, it’s been a relatively uneventful week for Ellie.  She’s still storming everyday (usually more than once a day), even after doubling her dose of propranolol and adding another medicine (clonidine) to work as a preventative measure as well.  I think her storms are shorter and less scary, but they’re still happening.  I know that the neurology team has consulted the staff in CICU, but they haven’t been down to chat with us on what a plan might be moving forward.  Now that we’ve eliminated brain injury and oxygen deprivation from the possible causes, it’s possible that her pulmonary hypertension is to blame for her storms.  We’ll have a better understanding of that once she’s through her first heart surgery.  If we get her pulmonary pressure under control and she’s still storming, well, then we know it’s just an extra special little bonus that she shares with us daily!  Let’s hope the banding stops the storms.

As far as the trach and g tube go, Ellie is doing well with both.  It’s still terribly uncomfortable (for me) that she doesn’t make sounds when she cries, coughs and gags.  I know I’ve said that every single day here and our nurses are tired of hearing it, surely – but I just can’t get over how unnatural that feels.  Poor bug cannot send her distress signals.  We have started training on trach care, though… just taking the first steps into a pretty intense itinerary of trainings.  On a very happy note, Ellie is being weaned off of the ventilator.  That’s fabulous!  She spends 4 hours on CPAP settings (CPAP stands for continuous positive airway pressure) which allows Ellie to breathe on her own with a little support; then 4 hours back on the ventilator to give her some rest.  Even on the ventilator, she only gets 23% oxygen (room air is about 21% oxygen), which is a good sign that she’s doing most of the work on her own.  Ideally, we would go home with a CPAP machine at night and just a trach collar during the day (where the stoma is kind of capped or has a little “T” off of it).  This would be the absolute best case scenario… and what we’re hoping for, of course. 

Our pretty little girl today... love those lashes.  

If this was in color, you could see how red her hair is!

Our weekend was nice.  Our boys came down on Friday night and stayed through this morning.  It was wonderful to get to spend so much time with them and we look forward to getting them back on Christmas Eve, too.  They are rotten little monsters, though… in the wonderful way that little boys are always rotten little monsters.  They are so full of life and energy – and questions… let’s not forget about the endless questions!  Friday night we had dinner together and got to play and snuggle.  We also let the boys open a few things that had been sent to us through the week.  They were super excited about this.  We told them that Santa had stopped in to see Mommy and told me that they’d been so good for Grandma and Grandpa that Santa wanted to leave these gifts and remind them that he was watching them and was proud of them for being tough boys.  Saturday morning I sat at breakfast crying because I felt terribly torn because I wasn’t able to sit with Ellie all day.  I know that our boys need their mommy, too… and I have to give them my weekends.  They deserve at least that.  But it’s hard to spend time playing and laughing and going on “adventures” when you know your baby girl is lying in a bed across the street in a room alone.  Ugh!  Once she’s out of ICU, the boys will be allowed in her room, so that will help when we’re in that boat.  Lance told me that morning that he has two mommies (me and Grandma Schroer).  He was very matter-of-fact with this.  Did my heart break a little?  Of course.  But at the same time, this was wonderful to hear.  I know that our boys are being well taken care of and I know that they’re enjoying every day.  I know they’re happy and I’m incredibly thankful that our family is so supportive.  I’m amazed that our families have just been able to absorb two little kids for the past month… that’s not a small task.  And it’s not just been a month.  They’ve taken our boys each time that Ellie’s been hospitalized and when I had appointments with specialists during my pregnancy.  Our family will continue to have them while we get Ellie through this ridiculously long stay this time.  We couldn’t be more blessed by our family and friends!

 Looking so peaceful after a bath last week.

 The quilts she lays on are donated by people.  The nurse said she thinks there's a whole center where they make these quilts for Children's Hospital.  My mind instantly went into Happy Gilmore mode and I quoted Ben Stiller "Good news everybody, we're extending arts and crafts time by four hours."

Daddy admiring his pretty little girl

Saturday night we took the boys to see the Holiday in Lights tour through Sharron Woods – which was awesome.  Sunday morning was a lazy morning with breakfast and movies.  We went to BWs for lunch (the boys said we were eating buffalo) and then back to the Ronald McDonald house for naps and such.  It was nice to have a day of rest and relaxation together.  This morning, the boys were excited to go back to Grandma and Grandpa’s house.  I cried in the bathroom, because as much as I’d felt torn on Saturday for not being able to spend the day with Ellie, I also felt torn today because I knew we were sending our boys away for a few days because we couldn’t be with Ellie and work and be the parents we needed to be for them.  Maybe I’m becoming an emotional wreck… dang it.  We’re doing well, though, as a family of five.  We’re trying our best to keep it together and be the parents we need to be for all of our kiddos… but this situation where Ellie is in ICU is making that balance a hard one.  All in good time, all in good time…

 Kaleb & Lance at BWs (Lance said he was a vanpire... yes, VANpire).  

 Sweet bug on Sunday

 The boys playing with Daddy at the RMH

Aaaarrrrrggggghhh... Kaleb donning pirate stickers

I can’t even begin to complain about the troubles we’re dealing with, though.  This has been a very hard week in the CICU.  In this unit, you’re not allowed to eat in your rooms, so all of the parents eat meals in the lounge down the hall.  This is a little bit of a pain, but at the same time, we have a chance to meet other families and share stories.  We have 5 families we’ve gotten to know pretty well in the CICU world.  I’ll refer to them by the baby’s name.  We’ve met the families of Aberdeen (Abby), Jayden, Christopher, Chance and Kendall.  I don’t feel right going into details about any of their stories, because frankly, they’re not my stories to share.  But I will say that two of these families lost their little ones this past week and my heart is broken for them.  One momma, in her infinite strength, told me “we prayed for God to heal him and touch him and make him whole.  And He answered those prayers.  He’s perfect now.”  This momma is wise far beyond her years. 

The realization of how fragile our little ones are is scary.  They’re resilient little boogers, yes, but the stories of how situations can change in an instant leaves me sleepless some nights.  I’m thankful that these families both have strong faith backgrounds because I don’t know how they would get through this time without God.  Please continue to pray for all families with kiddos in the hospital… they all need our prayers.

To follow this heartache with a very positive note, two other families that we’re friends with were able to bring their babies into the step-down unit this past week.  They’re out of CICU!  This news is always met with celebrations.  We hope to be moving that way in a few weeks.  The fifth friend… well, he’s our next door neighbor and he’s still hanging out here with Ellie.  They’ll both be in CICU for Christmas this year.  We hope for a much less eventful week this week, for sure.

Ellie should go in for a PA band (a band around her pulmonary arteries) the week after Christmas.  So until then, she’s hanging out.  In rounds this morning, they decided to take Ellie off the ventilator altogether this morning and leave her on CPAP all day long.  I’m excited about that.  So far, she’s rocking it!  They also said that she’s been able to go without morphine for 4 days, so they took away the order for morphine – another victory!  The fewer pain meds, the better, in my opinion.  She’s tolerating her feeds well and is sleeping comfortably as I look over at her.  I told the team this morning that they are making me a very happy momma (for taking her off the vent, for taking the morphine off the list, and for being just one day away from stopping antibiotics – yahoo).  She is one sweet little bug, that’s for sure.

A little side note, if you drink from cans (pop (soda), beer, etc.), I encourage you to save the tabs and donate them to your local Ronald McDonald house.  I can’t begin to tell you how amazing the RMH has been for us.  There are over 400 regular volunteers here and they house 78 families (and have a lengthy waiting list for rooms).  This place is amazing and full of love.  As for tabs, last year, they raised $42,000 by taking in donated pop tabs.  Just sayin’… sounds like an easy way to help out an amazing cause.

Thank you all so much for following along.  I know that we ask for a lot of prayers... but know that your prayers are holding us together and lifting up the other families we meet here.  They sustain us - more than you know.  We love you!

When the goal makes no sense at all...

I’m trying to wrap my head around what is going on and what the goal is here, with bug.  In rounds this morning (Wednesday 12/17), the cardiologist said that he was happy with Ellie's stats, but it’s a bad sign that she’s NOT going into heart failure.  Huh?  They were hoping that by installing the trach (I like “installing” better than “placing” because it makes her sound bionic), it would decrease the pulmonary vascular resistance (the pressure in the arteries to her lungs) and allow her to over-saturate and go into heart failure.  Once that ball was rolling, they could band her pulmonary arteries to reduce this pressure and Ellie would then be getting closer to being ready for other surgeries.  Since Ellie has been on the vent with her trach, her oxygen saturation hasn’t changed much (still hanging out at about 80%).  This means that if they were to go in and do the banding surgery now (which is what we thought the plan would be), they would restrict the blood going to her lungs too much and she’d get pretty blue – which is obviously not the goal.  So, we’re kind of in a wonky position, really.  It feels so wrong that the cardiologists are not happy that she’s not going into heart failure right now (for the grammar police, I know that’s a triple negative… just reinforcing how wrong this feels).  I guess in this situation, heart failure would be a good sign and it would mean that we could start moving forward.  Right now we’re just hovering in a weird place.  A weird place where we watch her silently cry and cough… and hope for heart failure soon.  Ick – what kind of an alternate universe is this? 

On the plus side, A BIG PLUS, Ellie has now gone through her first trach change… which was the milestone we had to pass in order to be able to hold her.  I just got the okay to hold her a little while ago, but she’s currently storming.  So I need to wait on her medicine to take hold and calm the storm, then get a nurse to help me manage the tubes and wires to finally hold our bug (for the 1^st time since 7:30am last Friday morning).  It’s been a long wait (nothing compared to a lot of kiddos in this unit, but still).  My next question will be, “when can I start putting clothes on this kid?”  Brandon picked up the most adorable little tutu for her yesterday, along with a pretty little Christmas shirt that says, “Oh come let us adore me”.  Cuteness! 

Her big bright eyes looking up at me - LOVE!

For anyone who did not see these pretty pink piggies on FB... Ellie's first nail polish :)

I would say that maybe we’d be able to go back to a step-down unit soon so that more people could see her or so that the boys can finally see her, but they said we’d be in the CICU for a while yet… at least until they figure out the whole resistance thing and why she’s not in heart failure.  Dang it!  This is my least favorite place to be in the hospital.  Wait, I take that back… the OR is much scarier for me.  We’ll take the CICU.  We did kind of make it our own this time.  Ellie has her pretty prayer blanket and her name is on a banner in the window.  We have cards and pictures from other kiddos, and Brandon decorated her door for the season.  We’re hanging out… taking it a day at a time and praising God that our Ellie is not any worse than she is.  She’s not smiling much these days… but I think she will when we finally get to hold her.

Daddy decorated Ellie's door for Christmas/winter

Update as of 6pm:  I did get to hold Ellie this afternoon and I’m looking forward to more cuddles tonight.  I was able to learn about changing the ties on her trach (and saw the pressure ulcer she has next to it).  [For the other HealthFitness folks reading this, Smiths medical makes the trach ties… can I tell you that right now I LOVE Smiths??  Haha!]  And they helped me put clothes on our bug today, too.  So she’s dressed for the first time in 5 days, too.  I adore this little bug.

I got to hold Ellie bug in the afternoon - finally! 

Daddy got to hold Ellie when he was "home" from work.

To end this post on a very happy note, I have to share some pictures of our weekend with the boys.  They are down here on weekends so that we get a few days a week to cuddle with them and and take them on adventures.  On Sunday, we went to the Newport Aquarium to see Scuba Santa and spend time with friends.  Daddy brought them back to Grandma and Grandpa on Monday morning.  Monday evening, some friends of mine came all the way down here and took me out to dinner.  I can't believe I forgot to take a photo while we were out - but I was so thankful to go out, catch up, and laugh until I about cried with these ladies... THANK YOU!!  

The boys were amazed by the big Christmas Tree at Newport on the Levee.  

Lance said, "it's like Grandma and Grandpa Schroer's big tree". 

The boys look tiny in Santa's sleigh.

Waiting to see the Scuba Santa show. 

The boys with their friend, Connor Beech, checking out the jellyfish.