Go away, thunder, we’re not friends.

As I’ve said a thousand times, when you don’t see me post for a while, it’s because things are going great with Bug and we’re busy spending our days being “normalish” and enjoying every morsel of it.  And boy, have we been doing that.  We’ve been living it up as we’ve been able to do so many things out and about as a family… knowing that cold and flu season was looming ahead… knowing that it brought with it the need to hunker down with the littlest one.  Dang it.  We’d really hoped that by now, she would be free of her trach, but we’re not there yet.  Last Monday she had surgery #12.  This is the first time that she didn’t actually have any cutting or dilating happen while in the OR, so I don’t think this actually counts as a surgery.  It does mean that her new airway has stabilized quite a bit (big success), although there is some concern that the front of her trachea is collapsing a bit right above her trach stoma. 

That night, we tried a capping procedure at night in the hospital.  Epic fail, I thought.  She was able to oxygenate well… which was the goal, but Ellie was miserable.  She cried and screamed (remember that we’re not used to hearing this, so it was really heartbreaking) and fought sleep the entire night.  I held her in the tiny recliner I was supposed to sleep in and tried to get her comfortable.  I would try desperately to get her to sleep for 45 minutes to an hour – finally getting her to drift off – and the IV pump would alarm, or the feed pump, or it was time to take her blood pressure.  At 2am, I finally broke and snapped, “We’ve got to leave her alone” at the nurse.  It wasn’t my finest moment.  I was crying… I was frustrated… I felt like this glorious dream of having Ellie decannulated was crumbling in front of me.  The nurse reassured me that Ellie was doing well and surprisingly, went on with all that she had to do through the rest of the night like a ninja in Ellie’s room.  I thanked her in the morning and apologized for being grumpy at 2am.  I took my very exhausted baby home with orders to cap no more than an hour at a time during sleep for the next four weeks.  We’ll see where that puts us.  The 1-hour trials are still hard to do here… but nothing like the ten hour torture of that first night.

A very tired Mommy & Buggy after her 1st night time capping trial

Sometimes, Ellie falls asleep capped and does great through her 1-hour trial, but more often than not, she fights it.  She has sleep apnea and needs oxygen while she sleeps.  This means that we have to put a nasal cannula on her before bed.  Ellie hates this.  Thanks to the G tube and trach, Ellie hasn’t had to have things taped to her face since she was two month old.  She is not about to let us start doing this again.  So I think part of her frustration is having tubes shoved up her nose and taped to her face when she’s supposed to be relaxed.  The other stressor:  breathing itself.  For so long, breathing has been effortless for Ellie.  Either her ventilator was doing it for her, or she was breathing through the trach with absolutely no resistance.  Now, she has to figure out how to breathe through her nose when she sleeps and that’s a whole new thing to learn.  Something so simple and something we all take for granted… she has to learn.  And it’s hard work.  So that’s part of her frustration, too.  This road to decannulation is harder than I imagined – here’s hoping that it starts to get smoother. 

She’s still so full of joy.  She’s a smart little cookie and has personality to spare.  She wants to be involved in everything that goes on every single day… and we couldn’t be more excited about all of this.  She is making incredible progress in therapy and has even started saying mama, dada and bub,bub (for the boys).  She’s learning how to climb our steps (and sometimes how to fall back down a few) and is standing all the time now.  She’s amazing.

She's working hard on self-feeding.  

And we were keeping the cannula on her all day to see if it helped with her comfort level

One trick that she’s picked back up that we’re not so impressed with, though: storming.  Ugh.  I can’t even begin to tell you how this makes me feel.  The first episode occurred on Monday, October 10^th, the day of my grandma’s funeral.  We’d spent the day with our family celebrating the life of my grandma and enjoying the company of family from all over.  But you know how those kinds of days can be physically and emotionally exhausting, right?  This was absolutely no exception.  By the end of the day, Brandon had headed to work and I snuggled in with all of the kiddos in my room.  We did not have a nurse that night.  Ellie seemed restless and Lance offered to snuggle with her.  When her pulse ox alarm started to go off, I thought her probe was bad and silenced it for a bit, while I climbed out of bed to cuddle her.  She nuzzled into me, but couldn’t stop moving.  Her pulse ox machine never reads well when she moves around so much, so I waited a bit to turn it back on.  After some more cuddles, she started to sweat and I decided to bring her upstairs to her room, place her in the crib and see how she’d do there.  When I kicked the oximeter on this time, her heart rate was over 170, her oxygen levels were fighting to stay above 90 and when I took her temp, she had skyrocketed from “feeling warm” an hour before to a temp of 104.  I called Brandon at work and gave her Tylenol for the fever.  He headed home quick during his lunch break and took her vitals again.  Her fever was starting to come down… slowly.  By this time, the Tylenol was able to calm her enough to let her sleep.  Her respiratory rate was still high, but starting to decline… HR and temp followed suit.  Her oxygen level raised to a normal level as well.  Storming.  Only this time, Tylenol seemed to make a difference for her.

We weren’t 100% sure this was what was happening because she hadn’t stormed for about a year and that was under extreme stress in the hospital.  We had a great (read: normal) day with no issues.  She wasn’t sick, she wasn’t in pain.  There wasn’t an explanation. 

Earlier this week, she showed some of the same behaviors for our night nurse.  Ick.  Last Friday, we’d had another fun family night at the barn enjoying a fish fry and lots of activity.  All three kiddos fell asleep on the way home (Ellie fell asleep in the driveway with her cap on her trach).  Our night nurse, Danelle, came on shift 15 minutes later and took the peacefully sleeping Bug out of my arms and let her finish her 1-hour capping trial without issue.  I went to bed, looking forward to enjoying a night of sleep having my big bed all to myself. 

At about 12:20am, Danelle knocked on my door.  She said, “Jackie, I need you up here”.  I thought it was already morning, and stumbled out of bed to go upstairs.  Once upstairs, I could see that things weren’t right at all.  Ellie’s color was awful… pale, almost yellow.  Danelle started firing things at me that my sleepy brain wasn’t ready for.  I watched as Ellie drew her knees and elbows up and shook (seizures?), I saw that her heart rate was peeking around 160 and her oxygen was struggling to stay in the high 80s.  She was on 3L of oxygen at the time.  Yikes!  Her capillary refill was awful.  When we pressed on her fingers and toes, they’d stay white for a very long time.  Her respiratory rate was increasing.  If this was storming… it was coming on fast and furious and it was looking scarier than what we’d seen when she was little.  I was scared.  For the first time in a while… this little girl really had me scared.  I called Brandon.  Then I called mom and she said she’d be right over to stay with the boys.  We took a core temp on Ellie (98.4) and packed up the van to head to Dayton.  We called ahead to the ER to let them know the situation and when we arrived, were taken into the Special Care room.  Now, we’ve had our share of ER trips with Ellie and the boys.  We’ve been taken back to regular rooms and we’d sit there and wait for registration… then for another person… then for someone else… the ER was a long waiting game.  Not this time.

This time, they walked us back to a room behind the charge nurse desk, through a set of double doors, and into this one room… separated from all other rooms… it had an elevator right outside of it and big double doors into it.  It was set up like a trauma room and I’ve never been in a trauma room.  I walked in and my heart dropped.  I set Ellie down on that big bed and took a step back.  I looked behind me as ten (seriously – TEN) people flooded that room and surrounded my little girl.  Thank goodness Danelle was there because I couldn’t speak much at all.  I was able to answer a few questions, but she was there with her chart and was able to answer specific questions about medications and doses and such.  I was overwhelmed.  They took a core temp again – 104.7!  Her temperature had risen from 98.4 to 104.7 in less than an hour and half.  This storm was severe.  After an hour and a half or so, Ellie calmed down.  They’d given her a Tylenol suppository and that had settled her down some.  We’d wait in the special care room until daybreak when a room was available upstairs for her.  She had awful trach secretions and they wanted to monitor her for those, so they took us up to PICU for observation.  The rest of our admission was based on those secretions.  Nothing more was said about storming from the medical team – even though I’d pushed with my questions.  I’m not sure they believed me at all… even when I explained her history and how quickly things changed that night.  This isn’t new territory for us… this is a child who storms who shouldn’t storm and that makes me sound like a crazy person, I guess. 

Getting and EKG in the ER after she'd settled down

The next day - back to her silly self

So now onto the next step… the part that makes my insides turn and twist… the part that makes me want to throw a fit like a petulant child:  we need to know why.  We need to find what we cannot see, essentially.  We need to figure out what has changed recently to make these storms reemerge in our “healthy-ish” girl.  In the past, these were primarily cardiac related… we think.  To be honest, her storming has always been idiopathic (or there wasn’t really an explanation).  But once her heart was repaired in Boston… they went away.  We’re researching diligently now… and making appointments with specialists to make sure we’re covering our bases.  Sooo… that’s where we’re at.  I feel like these stupid storms took the wind out of my sails, yes… but the silver lining here is that they’re only a small part of our life with Ellie.  She spends her days happy and full of life.  She signs songs to us and loves on us like you wouldn’t believe.  This is just another hurdle… but one we wanted to be done with long ago.  Damn you, thunder!  We are not friends... and you will not win this battle.

Home - but NPO

Okay, so I have been terrible at updating since last week... but it's been busy.  First, thank you all for all of your thoughts and prayers.  Ellie is healing well after her surgery last week... she's remarkable!

On Friday, the surgeon came in and removed her drains and dressings and I got my first look at her sutures.  On her neck, she has a long lateral incision that looks like a smile (how appropriate!).  On her chest, she has a small incision where they removed her rib.  The surgeon did a beautiful job with her sutures... I think her incisions will heal beautifully.  Friday was great!  Ellie was in a good mood, she was full of energy... and she was determined to climb out of the bed.  I didn't leave her bedside unless she was sleeping because I was sure she would launch herself over the rails.  Turkey.

Saturday morning, we were waiting on rounds and waiting on a time for discharge when I started feeding Ellie her breakfast.  She was eating well and drinking like a champ through her straw.  This is totally gross, but I leave her HME off of her sometimes to allow her to work on coughing up any secretions she has.  She'll need this strength when she doesn't have a trach... so this is good practice.  While we were having breakfast (yes, I was eating what she wouldn't touch on her plate), her secretions were heavier and more frequent than normal... and the color of her formula.  When I wiped them away with a paper towel, I inspected them (read: smelled them) to confirm that they were, indeed, formula.  I called in the nurse and continued to eat while I waited.  Yep... I'm that disgusting... I can wipe away sputum, smell it, and continue with my breakfast.  My grossness tolerance has increased significantly since having Ellie.  Ehh... what can I say?

Anyhow, when the nurse came in, I had him help with suction as I gave Ellie more formula to confirm what I'd already suspected.  Bottom line: she was swallowing some formula, but there was a good amount that was leaking down into her airway.  Fortunately, Ellie has the strength to cough that up instead of letting it settle into her lungs.  I was certain this would mean additional testing and such before we could go home, though.  I looked at her and said, "really, Gilligan??"  I assumed we'd have to have a chest x-ray to see if there was any fluid on her lungs and we'd have to have a swallow study done before we'd get to go home... and I thought maybe we'd have to wait until a weekday for that.  I was totally bummed as we waited for rounds.

The surgeon that assisted Dr. Elluru during surgery was in rounds to talk with us that morning and I sheepishly walked out, expecting bad news.  Dr. Patel had none of that for us.  He explained that the stent that they used covered the surgical site, and also covered her vocal cords (which we knew), but it came up high enough that it could cause the epiglottis to close onto the stent instead of onto the top of her natural airway.  Since the stent has a tiny hole through it, if it wasn't making a tight seal, some liquids could leak through.  This was to be expected.  What??  He said to stay away from liquids (or add thickener) and she'd be fine with baby foods, purees, and other soft foods.  We have to stay away from crispy foods anyhow, but he said we should be alright with soft things.  So we waited a few more hours and went home Saturday afternoon.  Awesome!  Our best guess is that the airway was sealing just fine the first few days post-op due to swelling in the tissue surrounding the epiglottis.  Once the swelling receded, the epiglottis started closing on the stent.  That's the only explanation we could come up with as to why we didn't see it earlier in the week.  [how many times can I put "epiglottis" in a paragraph, right?]

Saturday was busy... whenever we're discharged from the hospital we have to meet with our nursing companies to resume care before our nurses can start again... and we needed to pick up the things Ellie would need at home.  Saturday night, her baby food was leaking from her trach during dinner... dang it.  This is scary because the risk for things like pneumonia are awful when you have foreign things in your airway.  So we called the doc in the morning and she's been put on tube feeds (with a few solid foods... think sandwiches) just to give her mouth the practice of chewing and swallowing.  We only give her a tiny amount of food by mouth each day and the rest is given through her G Tube.  Thank God for tubies!!  (For those not familiar with medical jargon, "NPO" in the title of this blog entry stands for nil per os... Latin for "nothing thought the mouth"... since all medical jargon is in Latin and all.)

So Ellie is mad during mealtimes when she sits and signs "more" and "eat" at us when she can't really eat.  Poor kid.  We're keeping her belly full... but that's not the same as eating.  This girl loves her spicy food and peanut butter.  She's due back in the OR on 8/15 to have the stent removed.  We should just have a short stay for that surgery.  Let's pray that her epiglottis closes without issue once the stent is removed and this little beauty can go back to eating by mouth.  I know we'll see regressions in feeding therapy... steps she's worked so hard to achieve... but hopefully not too much regression.

In short - we are home.  We are working on packing and getting ready to move soon... so that keeps us busy while we're not at work.  Ellie is mad about this food situation, but we only have 13 more days like this until she's free of her stent.  Fingers crossed that all goes as planned!

This was Ellie on Saturday... waiting for discharge paperwork.

Post-op Day 2

Brandon worked last night and since Ellie is in a regular bed (not a crib), I thought I'd climb in and snuggle with her all night.  I assume that once she's really awake, we'll have to move her back to a crib because I'm certain she'll launch herself over the sides of a regular bed about fourteen times a day, otherwise.

So at about 11:30pm, after Ellie had been sleeping for several hours, I finally climbed into bed next to her and cuddled in.  She rolled into me and had the biggest smile on her face to see that I was there next to her.  I got the warm and fuzzies and drifted off to sleep.  That sleep was short lived.  Apparently, when you let your kid sleep for much of the day, then lay in next to her with her arms wrapped in immobilizers, she thinks they're weapons.  I'm not kidding... Ellie turned into a Chuck Norris gremlin last night and tried to kill me in my sleep for hours.  It wasn't cute... but I was too tired to get my butt up and move to the couch.  I assumed that she'd stop eventually.  She'd doze off, then awaken again and chop chop chop with her arms and legs again.  Seriously, I think she was trying to break me in half.  She's crazy!  At 4am, I gave up and went to the couch - knowing I needed to get up at 6am to start my day.  Maybe she just didn't want to share her bed because she slept beautifully once I was out of it.  Turd.

Needless to say, Ellie is feeling better today.  She's strong and moving around like her rotten little self.  She's sore, of course, but not as sore as I thought she'd be.  She has an unbelievably high tolerance for pain.  Yesterday, she was allowed to eat by mouth.  I thought this would be harder for her since the back side of her trachea was cut open and lays right against her esophagus.  But she had no trouble eating.  Tough cookie!  In the evening, Batman came to visit her - we had to send this picture to her brothers.

After this, we were able to finally give her a bath and put her in regular clothes.  There is so much to be said about putting a kiddo in their own clothes in the hospital.  Hospital gowns are just too sad on kids.  They suddenly look ten times better when you put them in regular clothing, so I always push for this when Ellie's inpatient.  I think I drive docs crazy when I ask over and over again when I can dress her... but it's important!

This morning, she got to wear her "You're just peanut butter and jealous" shirt.  Everyone's getting a kick out of it and Ellie is full of her big personality today.  She's flirting and showing off.  She's waving at everyone that comes in and blowing kisses.  THIS is our sweet girl!  We're hoping to get her surgical drains out today and they just let me put an HME on her trach instead of the cool mist collar.  Just one less thing for her to tangle herself in, right?  She's having a good day, y'all!  Praise God!

Road to Recovery

7.27.16:

Last night was NOT fun.  Ellie was coming out of anesthesia and as it wore off more and more, her pain was increasing rapidly.  She was writhing in pain.  I’d asked a nurse if we could get her something for pain – our nurse was attending to a code at the time, so things were a bit slow.  While we waited, Ellie would cry and suddenly stop.  Her apnea alarm on the monitor would go off, startling her back to crying again.  She’d stopped breathing for 22 seconds the first time, 20 the second time.  She continued the cycle of cry, stop breathing, cry again before we hit the call button and brought the attending, nurse, and resident in to help assess the situation.  We've dealt with sleep apnea before (related to her small airway), but never episodes of her forgetting to breathe when awake.

Of course in the midst of this, her O2 sats would drop (happens when you don’t breathe) and her heart rate would increase because she was so upset.  It was scary stuff.  We put her back on bipap so that if she stopped breathing again (which she did), it could take over and make sure she kept a decent respiratory rate.  At least this allowed her some rest. 

Thank goodness we hadn’t given her morphine yet or we might have really been in trouble.  For the next several hours, she continued the same pattern, but was no longer upset.  She would be breathing okay on her own for a minute or two, then stop and bipap would take over for 4-5 breaths before she'd kick back in again.

Through the night, Ellie was able to get some rest… Brandon and I were, too.  Dayton Children’s has the best parent sleeping arrangements (unless you’re in IMCU) of any hospital we’ve stayed in… hands down.  So that was a happy note on the night.

When I got up this morning, Ellie was awake and looking around.  She wasn’t upset and she didn’t seem to be in pain.  She can only have Tylenol and Ibuprofen for pain management.  I’m pretty sure I’d be throwing chairs at people if that was my pain management after what she’d gone through yesterday… but she’s much stronger than I am.  I got a little smile out of her and she liked that I was playing with her piggies.  Brandon is laying with her now playing with her animals.  She’s pretty darn happy about that, but a little violent as she kicks at him sometimes.  I think she’s mad that her arms are in immobilizers and she can’t suck her thumb or play with the toys we brought.  She’s also pretty mad at her IV pump when it alarms at her.  Fortunately, she’s no longer used to these background noises.

All in all, this morning is starting out much better than last night ended.  I’ll post again later today within this post to let you know how today has gone. 

Thank you, again, for all of your thoughts and prayers.  She sure keeps us on our toes.  Let’s pray for smooth sailing moving forward.

2:00pm update: Our little champ is really showing us what she’s made of today… in the best way!  She was awake this morning as I played peek-a-boo with her puppet and got some genuine smiles out of her.  She gave kisses.  With her arms still immobile, she reached her flexible little legs all over the place to play with her toys… kicking them all over her bed.  A therapy dog came in and she loved petting her ears with her piggies.

After mid-morning rounds, they decided to take Ellie off bipap and put her back on the cool mist machine.  She’s done great on that ever since.  So she’s breathing just as she should be.  Celebrations!

Speech therapy came in (the same therapist that worked with Ellie when she was a month old) and we were able to sit Ellie up in her bed and let her eat some food.  She was very ready to take some food by mouth and did great.  That’s my sweet girl!  Right now, she’s snoozing.  When she wakes up, she’s going to get a bath and some trach care.  Once she’s all cleaned up, I’m allowed to put her in her own clothes.  There’s something about babies in hospital gowns that’s just too sad.  Once she’s in her own clothes, I know she’ll instantly look like she feels so much better. 

Today is a great day.  

Sitting up enjoying some lunch.  She tried jello and string cheese for the 1st time today.

She liked yogurt the best (as always).

Surgery 7/26

I'm updating from my phone... so these will be short, but I'll try to keep you as up to date as possible :)  We arrived in Dayton at 8am and got everything ready for surgery.  This is the first time we were able to sleep in our own beds the night before surgery... kind of weird, kind of awesome.  Here are pictures of Ellie as we waited to go back.  She was getting very sleepy by the end.

Daddy made her a balloon!

11:30am: They just took her back for surgery.  It'll be about an hour before they'll start the actual surgery and surgery is estimated at about four hours.  I'll update when we hear more.  Thank you for all of the messages and prayers already!  #teamelliebug

12:35pm: Actual surgery is now under way.  They had to set an IV and intubate her and do a quick scope before starting surgery.  But that's where they are now.

1:29pm:  They have just started the "rib harvest" part of the surgery.  I didn't realize until now that they were using a chunk of her actual rib for the repair.  This feels so "Genesis"... you know, creating something new from a rib... cool stuff.

2:37pm: They have now started the grafting in her throat.  Ellie is doing well.  They estimate the surgery taking another hour or so.  They'll call us again when they're wrapping up.  She will go right to PICU from the OR and it usually takes a good hour or so before we're able to see her.  So, assuming all continues as planned, we should get to see her again in about two more hours.

3:28pm:  Dr. Elluru is almost done - should be wrapping up in the next 15-30 minutes.  They will then take Ellie right to PICU. She's doing great.  We'll have at least an hour before we can see her once she's in her room.  Ahhh, I love the "almost to the finish line feeling".  I'll post pics and more updates later.



4:20pm:  Surgery is done.  CELEBRATIONS!  She is now in recovery.  Dr. Elluru said Ellie had a beautiful little rib that came out easily and provided perfect cartilage for the graft.  Her stent will be in for three weeks and covers her vocal cords, so she will be completely silent for three weeks.  Once we're through that, she'll have to have the stent surgically removed (but we were assured that was no big deal).

So now we just wait to go see her.  We are so very thankful for all of your thoughts, love, and prayers that have carried us through today.  I'll update later, but it may be a bit.  Thank you again!  Praise God!

Glimpse of her post-op.  She looks great.

7:20pm:  The first few hours were uneventful, but Ellie's having some struggles with pain and breathing right now.  We're not sure if this is a result of anesthesia or what right now, but it looks like we'll have to be careful about pain management because she's having episodes where she stops breathing... like, she's had ten episodes in the past 25 minutes where she's stopped breathing for 20 seconds or more... or until we agitated her to breathe again.  Yuck.  This has not happened before.  Keep those prayers coming, friends.

Ready for surgery?

Bah – that’s a joke.  No one is ever READY for surgery.  Ellie is scheduled for the OR at 10:15am tomorrow morning.  We’ve done months of prep work to get her body ready for this day.  No, she will not be decannulated post-op.  It’ll take a while to get to that point.  But the plan is for her to come out with an airway that is normal for her size.  Are we ready for that?  Absolutely.  Are we ready for step 2 and 3 and 4 through 25?  Sure.  But step 1 right now is surgery… and surgery sucks.  Sedated procedures aren’t fun, either… but handing your child over for surgery is the pits. 

This is the first time Ellie’s had a surgery that wasn’t critical to survival.  OF COURSE she needs a usable airway if it’s possible… of course.  But her quality of life isn’t deteriorating by the day as we await surgery.  So… it’s a different boat for us.  A better boat, surely… but different.  Before, we didn’t have an option.  She was getting surgery or she wouldn’t be here.  Plain and simple.  Now… she’s thriving.  The risks associated with surgery are still minimal compared to the benefits of life without a trach… but it’s weird to feel like we’re “electing” for this.  It’s not elective surgery – she needs a stable airway just as much as the rest of us.  It’s not feasible to think she can go on with an airway that can’t support her for more than a minute when that airway can be fixed.  It’s just a mixed bag of emotions here, if that makes sense at all.

The road we’re ready for…

During surgery, they’ll place some of Ellie’s rib cartilage as a spacer in the back of her trachea to widen it.  They’ll also place a long piece of cartilage along the length of the front of her trachea.  This will both widen the subglottic area (the area that is so tiny right now) and support the front side of her trachea.  We found out two weeks ago that the anterior (front) side of Ellie’s trachea has collapsed between her voice box and her trach stoma.  Her ENT said this happens sometimes, especially with trachs.  So they’ll use a long piece of cartilage to reconstruct that portion of her trachea and give support.  They’ll also place a stent in to hold the airway open how they want it during recovery.  Three weeks later, she’ll go back in and have the stent removed (I assume this is just a sedated procedure).  Three weeks after the removal of the stent, we should (SHOULD) be able to start capping trials and let Ellie try out her new airway.  So at least six weeks post-op (think mid-September-ish).

Do you want to know what I’m most excited for?  I mean… other than not worrying about her pulling her trach out and turning blue in a few seconds??  I want to hear her laugh.  Ellie will be two before she’ll be able to be capped and we’ve never heard her laugh.  Take a second to let that settle.  That’s hard.  On the happy side… the kid laughs (silently) all the time… she makes the most adorable little face and tucks her chin into her chest.  Sometimes, she really enjoys herself and throws her head back.  But without the ability to make sound, she doesn’t audibly laugh.  My heart aches to hear that sound.  So that’s my focus going into tomorrow.  I have to hand over my very healthy (in her terms) baby… but I keep focused on the fact that when all is said and done, she’ll be able to laugh.  I can’t wait for that… I can’t wait to see the look on her face when she hears herself laugh for the first time.  We have so many exciting adventures awaiting us on the other side of this.  We need to learn to babble yet… to jabber and start to talk.  She skipped all of that developmentally.  She was so delicate when she was first here and barely made any sounds her first few weeks.  When she started to struggle at a month old, she just slept all the time.  She was trached at three months.  So all of that baby language stuff… we’re going to catch up on that soon.  All in good time.  Let’s laugh first!

Sitting pretty in her room... a little disheveled here. 

This was how happy Ellie was waiting for her procedure 2 weeks ago... cutie!

The calm before the… surgery

We haven’t posted in a while… we’ve been busy enjoying life with our family.  Who can blame us for that, right?  Ha!  Isn’t that what we’re all busy doing this summer?  Packing as much life into our days as possible?  I’ll admit that we’ve not filled all of our days with wonderful adventures.  We’ve had plenty where we don’t want to do much and we lounge around too long.  We’ve had some where Brandon spends too many hours studying for his NCLEX (still waiting for his ticket to test).  There were days when I sit at my desk much longer than I should and cut into “family time”… but hey, we all have those, too. 

On the plus side, we have had lots of days so far this season where we played outside.  We are helping the boys learn to ride their bikes.  We let them play in their pool and let Ellie play in her little pool, too (read: it’s really a little Rubbermaid container that is small enough that she can’t fall over in it).  We’ve had sparklers and campfires and many nights at the playground.  We've done the festival thing here and there (food trucks, parades, rides, etc.).  We’ve gone camping (once) and just returned from a great vacation with family.  Summer has been amazing so far.  So we have no complaints here.  Brandon finished school last month, we are trying our best to keep the boys on a schedule, Brandon is just starting a new career which will bring with it a totally new schedule for him and our family, we are looking forward to moving in the next month, I landed a new job within the company I have worked for since 2009, and Ellie… she’s learning and growing and proving that nothing is impossible for her.  We have a family reunion and our first Down syndrome association family picnic coming up soon, too!  Things are busy and crazy and exciting… a little stressful at times… but stressful in a good way, that’s for sure.

Ellie and I watching fireworks

This summer is good – dare I say GREAT!  But things are moving along quickly and I can’t believe that July is already here.  For so long, July has been off in the distance, lurking ahead of us… waiting around the corner.  We’ve been anxiously awaiting July because July brings hope of a new normal for us… but July also brings a day of sedated procedures for Ellie (next week) and another major surgery on the 26th. 

Ellie is absolutely no stranger to sedation or surgery, but she hasn’t been fully sedated for almost a year (last September she was sedated for an outpatient scoping procedure) and she hasn’t had surgery since we were in Boston in May of 2015.  The surgery she’ll have at the end of the month is intense.  They’ll harvest cartilage from her rib cage on the right side and they’ll use that cartilage to expand the ring of cartilage just below her voice box in her trachea.  This means they’ll cut the ring of cartilage in her throat at the front and back and use the rib cartilage as a spacer on the front and back side to make the ring larger.  See the image below.  Ellie will have the surgery that you can see in the bottom series of images where there are anterior and posterior cartilage grafts.  While this is a major surgery… it’s not “open your chest up and reconstruct the inner workings of your heart” kind of surgery.  It’s not “your heart and lungs will be stopped for four hours” kind of surgery.  I’m still scared and there are still serious risks involved (just like any surgery)… but compared to what Ellie’s been through in the past, she can totally handle this!  She's had a few bouts with bradycardia (slow heart rate) over the past week... only one night that was really concerning, though.  I normally wouldn't be too concerned about it, but of course, Ellie has to do these things just a week before getting sedated, so cardiology had her wear a Holter monitor for 48-hours.  She didn't have any episodes while on the monitor.  Instead, she saved those for the first night off the monitor.  I'm sure she'll be fine for sedation next week, her EKG looked okay this week.  With the type of repair she has with her heart, there is always a risk that as she grows, the tissue used to repair the septum won't transmit a signal as normal cardiac tissue would.  So there's a chance that as she grows, her heart rhythms may change.  We're keeping an eye on it and right now (other than a few nights where she threw us some curve balls), she seems just fine.  She just likes to keep us on our toes... turkey.  Cardiology said the results from her Holter looked just fine, though.

Back to the surgical plan:  her trach stoma is just below the surgical site here, and that should actually help her heal a little faster.  She will not need to be intubated for the procedure.  That’s a great thing.  Once she heals (however long that is), we’ll be able to start capping her trach and seeing how well she’s able to use her new airway.  Right now, capping is absolutely not an option.  Her current airway is too tiny to breathe in through.  We can use her speaking valve because she is strong enough to force air up and OUT of her airway, but she’s not strong enough to draw air IN through her upper airway now.  That’ll be something she’ll be able to do after surgery.  If that’s successful, she’ll have a sleep study and some other trials and such to do… and eventually, we can start to look at life beyond her trach.  What a thought, right?  We have no idea what this timeline looks like right now.  I’m hopeful that this could happen within a few months of surgery.  But there may be other things that we need to look at in this process (tonsils, etc.).  We’re taking it one step at a time, but this is a very big step, y’all.

And as much as I LOVE her Gtube (never thought I would ever say that I LOVE a feeding tube… but let me tell you, they’re amazing), it looks like we’ll need to get rid of that once we get rid of her trach, too.  And once that’s gone, we’ll have a baby that’s free of accessories – WHAT??  I mean, I’ll forever hold other babies and adjust them a certain way in my arms as not to accidentally pull their G tubes out (if I’ve held your baby/toddler in the past two years, I’ve done this to them… sorry, it’s a habit).  We’ll have to get rid of her G tube because Ellie has decided that it’s her new favorite thing to pull at and pull out.  Gross!  If we don’t keep her in a onesie, she’ll pull that sucker out several times in a day and hand it to me like she’s doing me a favor.  Not cool.  On the plus side, it’s created a learning opportunity for me to calmly teach our boys all about tubies and how they go in and what all I need to put them back in Ellie’s belly.  My boys know entirely too much about tubies and trachs.  In fact, they recently asked me for coloring pages where they could color their own Gtube buttons.  We live in a weird little subculture over here – don’t judge us.  On the plus side of this, we don’t really NEED her feeding tube anymore, either.  Ellie still gets one tube feed at night, but this is only because GI is really hesitant to pull all night feeds at once.  We have to take baby steps any time we want to make changes to her feeding regimen.  She’s taking all of her food by mouth (unless it’s the week we were on vacation and she decided that there was too much going on for her and she had no interest in eating or chewing or any of that business).  And thus… feeding tubes are my friends.  But just like any toddler who is able to eat by mouth, she will eventually eat when she’s hungry enough… I’m sure she’ll be fine without her tube.  I’ll just have to get over not having that amazing safety net that it has provided for so long… and cherish not having to give her medicines by mouth until we have to take it out.

Those are my thoughts as we march forward this month.  We have two friends that are also facing major surgeries next week… please keep Tillery (going in for surgery on her skull) and Aberdeen (another open heart surgery) in your prayers, too.  It’s a very big month for our friends.  We also have a friend who just gained her angel wings this past week.  Please pray for sweet Sofia’s family.  Her smile brightened our world and her momma was a constant source of strength in the RMH and she helped us navigate the world of trachs and ventilators.  This was a momma who (in the midst of spending years in the hospital with Sofia) secretly worked with the concierge team at Cincinnati Children’s to surprise families by buying them lunch from any local joint they chose.  What a wonderful surprise this was!  Chipotle in the middle of my work day during a crappy week in the hospital??  What a way to brighten someone’s day.  So… if you really want to pay it forward, call Best Upon Request at Cincinnati Children’s, offer to buy lunch for a family having a rough day.  I promise they’ll know of families having a rough day… and the Best Upon Request team does all of the running for you… they take care of all of it.  Do it in honor of Sofia and her sweet momma.  Do it because those parents will never forget the kindness of a stranger buying them lunch.  I promise!  That’s Hustling Kindness!!  If you want to do something a little smaller, buy a few meal cards from them and have them deliver them to a family in need.  Having a lunch ticket delivered from a stranger is awesome, too.  Let's keep Margaret's kindness going, y'all!

And on a really bright note, here are some pictures from our vacation last week.  I was having some serious anxiety about taking a trached baby to the beach.  Sand + water + an opening in your neck that leads straight to your lungs is certainly a recipe for disaster.  However, with months of preparation and the encouragement of family, friends, nurses, and the respiratory therapist with our supply company, we ventured out to the beach and the pool and we had a wildly successful vacation.  My family has been traveling to Fripp Island since 1983 (when my mom was pregnant with me).  Ellie’s first trip was in my belly when I was 30 weeks pregnant with her and this was her first opportunity to put her piggies in the sand.  We stayed in a house big enough for the 28 people in my family and my dad’s sister and her family traveled down at the same time to join us.  It was amazing and a much-needed break.  Can we go back yet?  Until next time, Fripp…

 Baby on the beach... trach covered, sand-free mat under her "pool"... she loved it

 And the pool - she was crazy about the pool, too

 The boys enjoying the waves with Daddy

Ellie petting a gator at the Nature Center.  
The boys got to hold snakes and visit the turtle day care.  Adorable!

One of my favorite pictures

And for reference, here is what we looked like last time we were in Fripp in 2014

And of course... we came back in time to celebrate July 4th.  We watched fireworks and took the boys camping for the first time.  Sleeping in a tent was just as I remember... felt just like sleeping on the ground, lol.  I'd do it again a thousand times - those little boys had so much fun!  Thank you all for following along with this ridiculously long post.  I'll keep you posted next week on Ellie's procedure and again at the end of the month when she goes in for her surgery.  Tracheoreconstruction: here we come!!

A day to celebrate

Today marks one year since we got THE call from Boston.  I sat on our couch with Brandon at my side.  My phone rang with a 617 area code – Boston.  I squealed a little with anticipation and tried to calm my nerves as I answered the phone.

“Hello, my name is Dr. Kevin Friedman, I am a cardiologist under Dr. Lock, head of cardiology at Boston Children’s…”

“Uh huh”… 

I had to act like I hadn’t been stalking every detail of their department for months.  I already knew what the man I was speaking with looked like.  I already knew where Dr. Lock had studied and what his background and specialties were.  I knew everything I could know about Boston’s program from what was available online and through other heart related FB groups.  I’d done my research, asked questions, hoped, prayed… and waited for this phone call.  What I didn’t know… what I was (literally) holding my breath over, was what they thought they could do for my baby girl.  Brandon was just as anxious as I was, so I was trying to jot down notes for him as I was talking so that he was at least somewhat savvy on the conversation I was having.

After Dr. Friedman introduced himself, he said, “We’ve reviewed all of your daughter’s files and test results thoroughly and we see no reason why we can’t make her a two-ventricle repair.”  With that, I wrote “2V” on the note pad for Brandon to see, threw my one free arm up in the air, and launched my body back into the couch in complete and utter victory.  I can’t describe this to you at all.  This is not “winning shot at the buzzer” victory… no.  This is more like “winning Powerball ticket, Publisher’s Clearinghouse Prize patrol, winning buzzer shot, homecoming crown, final Jeopardy answer AND a good hair day all wrapped into one… but probably better.  Ellie was sleeping on the living room floor.  By this point, she was in a really rough spot.  She was rapidly growing out of the PA band that had been placed during her first open heart surgery and she was fighting for each breath she took.  She was always blue and always looked pretty rough… though she smiled through it all.  It was go time for her – just in time! 

We’d meet with our cardiologist yet that week to confirm with her that we were headed to Boston… and have our van break down on the way home in yucky interstate traffic.  We’d wrap up our month with an epic road trip to Boston to save our little girl’s life.

For us, May will always be about miracles… about second chances… about life… about heartiversaries.  About taking our little Tin Man on a 13-hour trip down her yellow brick road to her Oz (Boston) to meet with her Wizard (Dr. Baird)… guided by the true Wizard (The Almighty, The Great Physician).  It’ll always be about bringing our sweet Tin Man home from Oz with her brand new heart.  We are forever thankful for all of the prayers and support that carried us to the through that trip and have carried us since.  We are thankful for this incredible testimony we’ve been given… for the outcome that Boston gave us… for the Good Lord’s mercy on our daughter.  We are very aware that Ellie’s outcome is extraordinary considering her starting point.  We count our blessings every single day.  Days like today are especially sweet to us and we have to share those especially sweet days with the world.  May God bless you all and may you feel His presence today and always.

Ready for summer

This is from December... but you can see her Tin Man plushy here

 Happy Mother's Day, Grandma Schroer

Happy Mother's Day, Mamaw Maier

 And these two... oi... these two are added here so that we never forget just how far she's come.  Whew... so happy this is NOT our reality anymore.  Praise God!

Night at the ball field

This month, my update is a big ol’ fat dose of normal y’all.  We like normal… we like it a lot.

Ellie had decided that she has no time for the crawling business that we so desperately tried to get her to do for the past ten-ish months.  She found a new way of getting around, and it’s the most adorable thing I think I’ve ever witnessed. 

AmIRight?  I mean, we are still encouraging her to get on all fours and work on her strength in that manner… but she’s discovered that she can scoot her little butt all over the house this way, and there is no stopping her.  It’s a real treat to watch her when there is music playing (say… Frozen playing in the background) when she has somewhere to go.  She’s scooting with her bottom half and dancing with her top half… I can’t even.

So between her army crawl and this (we call it the booty slide), she’s everywhere.  And it’s awesome.  She’s working on pulling herself up to standing, and she’s really doing quite well with this.  We try to get her to cruise along furniture, but she usually just likes to stand and dance.  This kid LOVES music.

Ellie is taking the world of food by storm these days, too.  Well, we had about a week where she wouldn’t eat for us at all.  Straight up – she refused.  I’d never seen a kiddo take total control of a situation quite like this.  Our boys were always so hungry that they didn’t have time to try to control the whole eating atmosphere… they just ate.  The first night she did this, we bumped up her tube feeds so that she was still getting calories, but then we realized that she’s not underweight, per se, and with any other toddler – they’d just be extra hungry at the next meal.  This worked a bit, but she was obsessed with turning her head to every food we gave her, spitting out her bites, and really working this control business.  Thank God for therapists.  Ellie’s OT gave us suggestions on how to take control back of the situation… and just like on Super Nanny, those suggestions worked like magic.  The first few days were painful, but that’s it.  Two days of us doing feedings our way… and she was happy to adjust and eat off of the spoon again without much trouble.  So thankful we have a team to support us when we want to pull our hair out.  Less stress for us, no more tears from her… happy family and nurses!

After this bump in the road, she just took off with what she’ll eat for us, and you’d think that we’d never before seen a toddler eat by the excitement we have with each new step.  The first time she picked up a cheese curl and put it in her own mouth I about cried.  Feeding therapy is a lot of work… a lot of work y’all.  Work we had no idea existed before we had a tube fed kiddo.  New textures are scary… and biting things, well, that just didn’t happen.  Ellie was excellent at picking up food and throwing it on the floor, but she NEVER put food in her own mouth... until just recently.  

Once she realized that this food we let her have was yummy (has to be better than baby food), she slowly let us experiment more and more.  In the past month, she’s taken on soup with crackers, cereal with milk, cheese curls, veggie straws, and cut up sandwiches.  She’s eating sandwiches, folks.  I know, I know… lame story for most of you… but this is a big deal.  And a big fat dose of normal for us… we like it when we can soak up some normalcy around here.  So this food business is really promising right now. 

We have no idea what else is on the horizon for this little bug in the near future, but she sure makes our days exciting… and taking on the smallest of things (like eating a sandwich) feel like a real adventure. 

 Our happy girl

Taking a walk with momma

The boys came back from spending twenty days away from home.  They were traveling with my parents… and came back very tan (totally jealous) and full of stories of lizards and alligators and swimming pools and bananas.  We missed those little boogers so very much, but love that they had a chance to hang out with their grandparents.  Mom and Dad came home with an endless list of funny stories about things the boys did, too.  Ahhhh, I love those little kiddos.  For all of the times that we ask them to sit and be quiet, though… what I missed the most was the noise.  The first few days, I ended up turning the TV on so that there was some background noise in our house.  As much as the chaos makes us crazy, it’s also so much a part of our lives that we feel lost without it.  Ask Brandon… I barely cooked for the man while the boys were gone.  I like cooking… but it’s so much more enjoyable when I have someone push up a chair next to the counter and ask to help stir or help crack eggs.  This never ends well for the kitchen, but I love those little hands that love to help.  Today, I about flipped my lid because there was a banana peel and the yolk of a hardboiled egg mashed into the floor under the table after breakfast.  Later in the day, there was glue stuck to about everything at the table… but they were making me pictures and then wanted to glue flowers to their pictures for me.  How could I be mad about that?  They are so messy and so busy and so full of… LIFE. 

 The boys on the Gulf coast with my dad

Playing in the pool... while it's 35 degrees at home

This week, their preschool hosted a Night at the Ballpark where all the kiddos were invited to play wiffle teeball on the school grounds.  They gave them each a colored hat that matched their team and made sure that each child had the opportunity to play.  There was music and hot dogs and so much fun to be had.  Remember that their school has a healthy mix of typical and non-typical kiddos, so they even had one of the fields play on an area covered in blacktop.  This way, the kids in wheelchairs had no problem playing along with all of the other kids out there.  I watched this and my heart was overwhelmed with joy.  I love that this is the school that our boys are attending… but above that, I loved that all of the kids there that night… they all were able to experience a big ol’ fat dose of normal.  Every kid got to hit, every kid got to field a ball.  Parents sat around on blankets and lawn chairs and enjoyed a beautiful night as their kiddos did something so simple, so wonderful… so normal.  It was awesome!  I look forward to the day when Ellie will also attend this school and I’m sure I’ll be even more aware of how “normal” they make everything feel. 

 Kaleb up to bat

 

Lance up to bat

Giving 5s

So as we wrap up this glorious Saturday and get ready for Mother’s day, I wish all of you a big fat dose of normal tomorrow.  I know that Mother’s Day is a hard one for some… and a huge celebration for others.  I’m not wishing anything over the top or extravagant.  That’s not what is important at all.  I promise that what is most important is what is mundane, what is simple, what is normal… spend your day focusing on that and celebrating, cherishing the little victories and normal moments left in your weekend.  We love you all dearly – thank you for continuing to follow along.

Happy Mother’s Day to all of the mommas out there… no matter how this day finds you.  God bless you all.

Toddler Phase & Holland

Ellie is now 19 months old (as of Sunday).  And every ounce of her being is pure toddler.  As much as I hate to let go of the baby phase, I so love the spunk and personality that comes with the toddler phase.  Don’t for a second think that Ellie is free from the regular toddler things, either.  I picked her up off the floor the other day after she was tearing all of the medical supplies out of her trach care drawer (she was literally throwing sterile cotton swabs and gauze pads in the air and letting them rain down over her).  I went to move her to a different side of the room so I could clean up the mess.  As I had her in the air, she flailed her legs front to back, creating enough momentum to thrust her whole body back and forth while she pouted in my arms – full on tantrum mode.  TODDLER!  She sat on the rug and I said, “No, Ellie, you can’t play with that (while signing NO to her).” 

She signed, “mine”. 

“You’re right, Elz… those supplies are all yours… but you can’t play with them.” 

Pouty face… signing, “mine”.  Toddler. 

She likes when we sing “The Itsy Bitsy Spider” and she does the hand motions along with it, but she really doesn’t like the motion that goes along with “out came the sun”.  I usually pause the song and say, “c’mon Ellie… show me your sun”.  She stopped Tuesday and signed “no, no, no” to me.  Yikes… that’s sass.  I’m in trouble.  She’s also learned to sign “what?” with her hands up.  She uses it in the most ridiculous ways.  She’s being rotten and she knows it.  I say her name in the “What are you up to?” tone… she signs back “what?”  Oh, how I wish I had a video of a day in the life of Ellie to share with y’all.  She might be the funniest little person I’ve ever met.  She fully understands everything that is going on around her… don’t you think for a second that she doesn’t.  She chooses who she interacts with and when – and she likes to see who will play games with her – but only on her terms for now.  It’s safe to say that she is quite the little social butterfly.  She’s still very overwhelmed in larger social settings, and rarely lets others hold her right now, but I’m sure this is just a phase.

She's currently obsessed with eggs.  

And how cute is the little beach outfit the Easter Bunny brought her?

We’d set a goal at her first birthday to have her crawling by 18 months.  We’re not there yet.  She is doing amazing things in therapy, she really is.  She’s able to sit on my knee and she’ll stand up all on her own to play with things on the couch.  She’ll shift her weight from leg to leg in a standing position.  She’ll kneel on all fours and move a bit… and she’ll army crawl her way all over our house.  But a belly-off-the-ground crawl, not yet.  I have to admit that I was pretty bummed out when we were getting close to the end of March and it was clear that this just wasn’t going to happen.  As I think about this today, I’m so very aware that today marks two years since we received Ellie’s first diagnosis.  On April 7, 2014, we were 18 weeks pregnant and we found out that we were having a little girl… and we found out that our little girl did, indeed, have Down syndrome.  We’d waited ten excruciatingly long days for test results to come back to say whether our 1 in 93 chance was positive or not.  In those ten days, we imagined so many things about our future child.  We prepared ourselves for a future as parents raising a child with Down syndrome.  In the midst of the fog, a friend sent us this analogy:

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

I still can’t read this without tearing up a bit.  But I have to say, I’d take another trip to Holland any day… Holland is amazing.  Holland is beautiful.  And tulips have always been my favorite. 

But not until I experienced Holland did I realize how amazing and effortless Italy was with my boys.  I’m not saying parenting is easy… geesh, that’s not at all the case.  The boys cause far more stress on the daily than Bug.  And there’s nothing in me that is jealous of how effortless (read: normal) Italy was or is for others… nothing at all.  Italy is great.  Holland is great, too.  I just wish I had an ounce of appreciation for how amazing Italy was when I was living it.  I’m still living it and I’m not fully able to appreciate how amazing Italy is sometimes. 

On Easter, my nephew (who is not quite nine months old) crawled over to me, kneeled at my knees, propped himself up on his one arm, and turned to look at what was going on behind him, supporting all of his weight on one arm.  It was like this monumental feat of strength and masculinity in this tiny (impossibly adorable) little body.  There was strength and purpose and rigidity in his pose.  Then he let himself down gracefully and went on to the next thing.  I sat in amazement.  Italy is amazing.  There is not a jealous bone in my body folks… don’t read that wrong… please don’t.  I love my squishy baby more than you can imagine.  And I love carrying that little girl around.  I’ll carry her around for as long as she needs me/wants me to.  That’s not what I’m getting at here.  It’s just that when you work with a kiddo for months (like… ten months) to do a task and it’s not happening yet… it amazes you at how naturally it usually happens.  Okay – long tangent – but to get to the point, Ellie is doing really well with therapy, but she is not yet crawling.  Who knows when she’ll do that?  We’re just taking in the slow pace of this Holland ride and trying desperately to give her the tools and therapy she needs to get to where she’s going.

Ethan showing Ellie how it's done!  Goodness, can he be any more adorable?

When we read (two years ago) that kids with Down syndrome may not walk until their second birthday or later, I couldn’t imagine carrying around a two year old all the time.  It’s funny how things that seemed like they would be so cumbersome before aren’t even a consideration these days.  Of course, we will do everything we can to get her to meet the milestones she needs to meet, but she’s really quite a peanut… and she fits just perfectly in my arms, ya know… I could carry this kid around for years to come and be perfectly content.  Funny how things change, huh? 

March was a big month for Ellie with appointments, too.  She stayed rather healthy… except for a yucky little bout with hand, foot, and mouth – ick.  We met with all of her specialists through February and March and we’ve been cleared by cardiology to move to annual appointments.  That’s a HUGE deal, people.  For the kiddo who needed to see cardio a few times a week… the one who was in the depths of heart failure at this time last year… ahhhh, I can’t tell you what it’s like to see a normal, 4-chambered heart on an echo and hear that there is no leakage in her valves.  Just so you know, I’m never going to stop posting about that.  I’m never going to stop singing the praises of her team in Boston and the Almighty that lead their hands last May… it’s just too much for words to ever justify for me. 

From a pulm standpoint, she’s been cleared to wean off of the ventilator through the night, but we’re waiting until after our April appointment to make those adjustments.  She’ll be moving to a cool mist machine that’ll deliver oxygen and cool mist through her trach while she sleeps.  This will make sure she doesn’t drop her oxygen levels too low while she sleeps (we have no idea how long she’ll still deal with sleep apnea).  But it’s a big step to get rid of the need for ventilation during sleep.  We’ll still have it on hand in case she gets sick, but it won’t be part of our daily routine.  Yippee!  Her ENT agreed that we’d be ready for her next big surgery in July.  We’re both excited and nervous about this.  This will be the step we need to take to get her ready to move towards getting rid of her trach.  She’ll need some sedated procedures a few weeks before surgery, then surgery in July… then work on using her upper airway after the newly constructed airway is fully healed.

Doodling with Rae while she waits on the doctor to come in

And finally, from a GI standpoint, nothing major here.  Ellie is eating well by mouth (this sounds silly to most of you, I know… but in the tubie world, eating by mouth is kind of a big deal).  She actually eats with us at all of our meals.  She seems to be pretty stuck on purees – she’s comfortable with all stages of baby foods, really.  We can’t complain there.  When we give her chunks of foods (like little cooked apples or carrots), she spits them out at us.  Not a fan.  She will nom nom on little bits of peanut butter sandwich… we’ll chalk that up as a win!  We’re trying to figure out a way to wean her off of the nightly tube feeds without screwing up her calorie intake.  This kid doesn’t gain weight for anything… okay, she does, it’s just slow.

So all in all, Ellie is doing great.  She’s making strides in therapy.  She’s making strides medically.  She’s learning sign language… and she’s certainly embracing everything about this toddler phase.  She is sweet and spunky and adorable and rotten to her core.  We love this Bugglet and we love that she’s been our tour guide through Holland for the 19 months we’ve been touring there.  Holland and Italy are indeed different… both beautiful and wonderful, though.  We just have to be careful that we’re able to celebrate the gondola rides AND the tulips in our household – a constant balancing act.   

Crazy socks for World Down Syndrome Day 3.21 

(celebrating all the kiddos w/ 3 copies of the 21st chromosome)

 Boys at an Easter egg hunt at Aunt Kay's house

This last picture is so near & dear to my heart.  On March 25th, we went to Cincinnati to meet up with some special friends of ours.  We'd met them back at the RMH while Ellie was inpatient in Cincy and have since leaned on them for so much.  When we met this day, they were preparing for the memorial service/celebration of life for their sweet Khloe the very next day and we wouldn't be able to make it because of Easter plans and such.  We were able to set up a pizza date, though.  We were able to get our kiddos together and let the boys hang out while us parents shared hugs and stories and a few tears.  We were able to tell each other our favorite stories about Khloe and Ellie and about triumphant and frustrating times.  We talked about things that you can only share with people who have walked the steps of complicated kid world and asked the questions you can only ask inside of this safe bubble of trust and understanding.  All the while, our sweet boys played together and hung out in all of their innocence.  Sandy and Diana stared at Ellie... loving the fact that she was eating... with her MOUTH!  We laughed and loved on each other like friends do... and it was just what we all needed.  I'm not sure when we'll get to see this sweet family again, but I'm so thankful that we made this trip to see them in the midst of their very busy, very difficult weekend.  We were all very aware of the empty space among us that little ladybug should be filling.  We love and miss her dearly.