Two birthdays, one smash cake, and a whole lot to celebrate….

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It’s finally time for that final post.  Once again, I can’t believe how much time has passed,  and early this week, as I realized it was Riley’s “fake” birthday, September 28th, the day she was “supposed” to be born, I figured this may be a good time to update everyone on our lives and how Riley is doing.

As you may remember, Riley’s “real” birthday was July 8th.  I’m pretty much over the “actual” vs. “adjusted” age thing, although once in awhile I do use it as an excuse…”Well, technically she’s really only 9 1/2 months old, not 12 months, so it’s okay that she’s not walking yet.”  However, I don’t have to do that much, because she’s doing amazingly well developmentally.  Riley is climbing up the stairs, cruising all over the place, and appears to be smart enough to back down the stairs and back off of the couch rather than going head first.  She’s partially potty trained (sort of weird I know, but no joke), combs her own hair, and throws food off her tray like a champ.  She’s still being seen by a physical therapist, with the ongoing goal of walking.  Trust me, she has no problem getting around.   She can actually crawl faster than I can, as I attempted to chase her the other day and had trouble keeping up.  Hard to admit, but true.  I’m in no hurry to have this kid walk…let’s face it, her first steps aren’t going to be a relaxing stroll, they’re likely going to be more of a hyper sprint.

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Where’s my espresso?
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Don’t even think about touching my eggs…

We had a low key birthday celebration for Riley with our families, which was absolutely perfect.  Riley had a smash cake, and of course it was the one moment she appeared rather subdued and just sort of daintily touched the top of the cake, causing us to force her hand through it so the goal of the smash cake could be complete.  She was beyond spoiled by family and friends, and her wardrobe remains out of control.

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So what exactly am I supposed to do with this?
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Ok, can someone just cut me a piece of this sugar bomb and feed it to me….I’m over this smashing stuff…

I decided that it was also appropriate to spend a portion of Riley’s birthday with her BFF nurse.  It only seemed right, as she’s a big part of the reason we’re able to celebrate Riley’s first birthday with smiles on our faces.  We did a little shopping while she carried Riley around the stores, and she spoiled Riley will several new adorable outfits.  They were both in their glory:)

Riley also had her first trip to the beach.  She enjoyed the calm ocean, but wasn’t feeling the sand.  When she discovered that sand was not to be eaten, she decided she was over it.  We had a wonderful time and plan to have a pool next summer so the princess can sunbathe without feeling the grit of sand between her teeth.  God forbid.

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What in God’s name is this contraption?!?!?

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Riley continues to attend the same daycare, and it seems she has finally adjusted.  She enjoys playing with the other children, although she continues to require music playing and a blanket covering the outside of her crib during naps to minimize distractions and her nosiness.  She’s the only one on the move in “Babyland,” so she’s been quite the challenge for the staff, and has been the reason for their purchase of baby gates and the sign on the door that now says “Please open door carefully as there are mobile babies in this room.”  Mobile baby = Riley on the loose.

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picnic anyone?

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It’s crazy how much I look forward to waking up in the mornings and going into Riley’s room to be reunited with her after a night of sleep.  I look forward to every second I spend with her, as she does something new and fun every single day.  She makes us laugh at least 10 times a day, and I kiss her to the point that she now will shake her head “no,” indicating “Enough, ma.”  Her dancing skills are out of control and she has a strong love for music.  Her days are incomplete without some Meghan Trainor or Bruno Mars:)

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will be featured on a windex ad…

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Medically, Riley has been doing remarkably well.  However, as expected, we still hit an occasional bump in the road.  We were on a good streak for about 5 months, and then over the past few weeks, I started to get that feeling in the pit of my stomach again as I scrutinized over how she sounded when she was eating, sleeping, and breathing.

It all started after a great report from ENT in August, and the decision to take her off of her reflux medications.  We began the weaning process, taking her off of her Prevacid, which she receives in the morning and has to wait 30 minutes before she can eat anything.  I was beyond excited about this no longer being a part of our morning routine.  Then we planned to take her off the Zantac if she continued to do well over the next 2 weeks.  However, about 2-3 days after Riley was off the medicine, she started to sound really “junky,” and was not eating well.  She was pulling off the bottle constantly and always sounded like she needed to clear her throat when she would eat.  I called ENT, and they put her back on the medicine.  Her symptoms started to resolve, and we began to feel better.  However, every once in awhile, I would hear this subtle, residual raspiness that reminded me of when she had a cyst growing in the past.  However, I seemed to be the only one noticing it, so I let it go for a few days, but then it started to wear on me.  I couldn’t help but feel that something just wasn’t quite right.  So I decided to call Riley’s ENT and just share what I was feeling and hearing.   It almost felt therapeutic to get it off my chest.  “Why don’t we schedule an appointment and I’ll see her in the office,” says the ENT. Done.

The weekend before this appointment was scheduled,  late Saturday evening and early Sunday morning, I hear something coming from the baby monitor that  wakes me up out of a sound sleep.  I was in a bit of a fog, and couldn’t quite tell what it was, so I got up and walked over to Riley’s room.  I hear every breath, and not in a good way.  She was wheezing and had a bit of a stridor.  Ian heard me get up and came to see what was going on.  He quickly became concerned as well, and I saw the look on his face that I’ve seen many times before.  I call it the “We need to take her to the ER” look.  I called him out on it and he didn’t deny it.  However, we agreed that I would sleep next to her and monitor her for the remainder of the night, and if it didn’t get better by the morning or if it got worse, we’d take her to the ER.

Long story short, her symptoms didn’t improve and we ended up taking Riley to the ER at around 9:00am Sunday morning.  Of course on our way in, her symptoms began to improve.  However, Ian and I continued on our journey, knowing that this is how Riley operates…if we turned around and went home, she would have declined again.  We were greeted by the ER doc, who appeared to be approximately 12 years of age, and as he was having trouble observing any of the symptoms we reported, he asked “What worried you so much that made you bring her in?”  So I reiterated what she sounded like throughout the night, along with her history of chronic lung disease and multiple recurring cysts, pointing out that we’ve been questioning whether or not she may have another one growing and are scheduled with ENT this week.  After consulting with the attending, the ER resident returned and informed us of the plan of action – a dose of steroids and discharge home.  Been there done that.  We can handle that.  It was the quickest, most efficient ER visit ever…we were in and out in about an hour.  We got home and had more than half the day ahead of us…just another Sunday with an eventful start to the day.

Riley’s ENT appointment was scheduled on Monday, September 28th. Ironically, this was Riley’s “fake” birthday.  However, it really would have been nice to make a wish and blow out some candles.  The anticipation of this day was starting to wear on me, and I started to actually feel relief the morning of, knowing that we would be getting some answers.  Ian and I both attended this appointment, as I knew there was a chance they were going to scope Riley in the office and no one should have to go through that alone.  Ian and I were flipping coins on who had to hold her down during the hour long wait in the waiting room.  Turns out we both drew the short straw…

Following a quick exam, the ENT doc decided that it would be a good idea to scope Riley in the office so he could see what was going on, given our observations and Riley’s history.  The disadvantage was that this scope only goes so far and remains above her vocal folds, so even if he doesn’t see anything on the exam, it’s still possible that there’s something going on.  It was worth a shot to see what we could see.  I needed some answers.  During the scope, Riley sat in my lap and I was instructed to hold her arms down, and Ian had to hold her head.  It was a bit torturous for both of us.  The scope went through Riley’s nose and down her throat, and as you can imagine, is not an overly pleasant experience.  She cried and screamed, and the ENT dictated what he was seeing, raising his voice some so that we could hear him over Riley’s wailing.

Once the scope was removed, Riley recovered quickly as she always does.  She’s such a trooper.  The ENT then began to explain to Ian and I that he saw something, but it was not what or where he expected.  There’s “something” on the underside of her vocal folds, “but I’m not exactly sure what it is.”  He pointed it out to us on the pictures he took during the exam.  “It didn’t clear when she coughed or cried, so I need to see her in the OR to get a better look and remove it,” he continues.  Here we go again.  We asked some questions, and basically what we learned is that the location of this “thing,” whatever it is,” is much higher up than her other cysts.  Her other cysts were subglottic, meaning below the vocal cords.  This one is actually on the cords.  I became concerned about the risk of removing it with it being so close to her vocal cords, but the ENT reassured me that where it’s located on the cords (on the underside) is not a bad spot and shouldn’t be an issue.  Well, Happy Birthday Riley Mae.

Surgery has been scheduled for Monday, Oct 12th.  It’s just another hurdle for us to jump over, and Riley will of course fly over it, hardly acknowledging it as a hurdle.  This past week is confirmation that Riley will continue to keep us on our toes.  It has also confirmed that there will be no prom or car keys when she turns 16.  She is grounded for a long, long time;)

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Doesn’t faze me…I already have a car and it doesn’t even require a set of keys:)
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HAHAAAA!! I have TWO cars that don’t need a set of keys. Joke’s on you guys!
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So explain to me again why I’m on the time-out chair…

Hello light at the end of the tunnel….

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Wow.  I can’t believe March was the last time I posted something about Riley.  Time sure is flying.  So much has gone on I don’t even know where to begin.  I could write an entire book covering just these last 2 months.  However, I’ll try to keep it brief and post lots of pictures, because I know that’s what you all look forward to anyway:)

Riley had another surgery in April, removing that 4th cyst discovered during the procedure in March.  Her recovery went well, and she didn’t even require a visit to the ER this round!  The ENT sent us home with a hefty dose of steroids for Riley so we could avoid any unnecessary ER visits, and it worked!  We follow-up with ENT the end of this month.

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What the hell happened to my arm? I thought this surgery was on my throat?!?
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I’m so over this…

Riley on steroids = freakishly abnormal strength = crawling earlier than mom and dad planned for = emergency run to Babies R’ Us to purchase child-proofing house items.

Yes, Riley is crawling.  She started out doing a half-ass sort of crawl, pushing herself up on her arms, hopping up to her knees, and then flopping onto her stomach, dragging herself forward….slowly but surely, eventually reaching her desired destinations.  Well it wasn’t long before she was full on crawling, pulling herself up onto her knees, and then heck, why not her feet.  She loves to stand, and her physical therapist says she will likely be walking in the next month.  I told her that I hope she is wrong, apparently we no longer need her services, and thanks a lot for creating a mobile child that never stops moving!  Of course I said this in the nicest way possible: ) It’s a whole new world.  Who needs toys?  The days of sitting and playing with her toys appear to be long gone…I’m hoping they come back one day soon.

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Why do you have that look on your face, ma? Sitting is overrated.
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Downward dog….

So with the arrival of May comes the end of RSV season.  Beginning in April,  I started to get excited because I could see the light at the end of the tunnel.  Finally!  Finally, we can begin to take Riley out into the world and let her out of the bubble we’ve kept her in since the day she was born.   She recently had her first trip to Kohl’s.  Her vocalizations were out of control, and she kind of loud, almost embarrassing me for some reason, so I just told people who were looking at us strangely that “She doesn’t get out much.”  It’s true.  She also just had her first trip to the grocery store this week and she thought she was so cool being pushed through the aisles.  She flirted with the cashier and tried to eat my keys…all those things she’s been dying to do for the past how many months.

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Ok enough of this adult stuff, lets get to the baby aisle!
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This blank is soft and all, but where’s the sand?

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In other news, Riley’s going to daycare.  I know, we’re getting gutsy here in the Lang household!  I started a part time job working with clients online, and Riley met her first boyfriend as soon as she was let out of mommy and daddy’s sight…all hell has broken loose!  Riley got accepted to a daycare that is for “medically fragile children,” and although Riley seems to be anything but fragile these days, she qualified based on her medical diagnoses and ongoing issues.  She is cared for by nurses who absolutely adore her, but Riley also knows how to keep them on their toes.  She started just a few weeks ago and is still trying to adjust to the new people and environment.  She’s finally beginning to nap, although her crib has to be covered with blankets and music has to be playing because she’s “nebby” per the nurses, and is afraid she’s going to miss something.  I told them I’m well aware of this and good luck.   She’s starting to eat a little better, although she likes to give the nurses a challenge and make them work for it.  Typical Riley.  Overall, it’s been good for both Riley and myself – She’s learning how to build an immune system, and I’m learning how to talk to adults again:)

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Let me suck it in first…ok how bout now?

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Finally, a couple of weeks ago, my parents held “Riley Mae Day” at their house.  It was our way of trying to begin to thank all of the amazing friends and family we have for their ongoing thoughts, prayers, and support they’ve sent our way since the day Riley was born.  It was absolutely wonderful.  Let’s just say the Nanno’s know how to throw a party…the food was delicious, a bounty of booze was provided, and the weather couldn’t have been more perfect.   Everyone finally got a chance to meet Riley Mae…the little fighter they’ve all been hearing about and praying for.  It was Riley’s coming out day:)

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This party is awesome…

Oh yea, and….Riley turned 9 months.  And 10 months!

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And her first haircut is in her near-future….

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A pothole requiring a little more than the PennDot crew…

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Let’s do this!

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Riley’s procedure was scheduled for 7:45 am on Monday.  On the drive in to the hospital, Ian and I talked about how we had high hopes that this would be the last time we would be driving to Children’s Hospital for this reason, hoping that everything gets taken care of and finalized today.  Riley was seen by the nurse, ENT, and the anesthesiologists before the procedure began around 9:45 am.  We informed the ENT of our recent observations, and of course at the time of his visit, Riley was sleeping peacefully on my shoulder, displaying no signs of the noisy breathing, which is what precipitated this rather emergent procedure in the first place.  The ENT was hopeful that he would just be able to “go in there with the scope and come right back out without having to mess around too much,” given the subtlety of Riley’s symptoms.  I began to question if this whole procedure was even necessary, but there was no turning back now.

Once again, we carried Riley down to what the nurse called “the kissing station,” right outside the entry doors of the operating room, kissed her goodbye, handing her over to another set of strangers (the anesthesiologists we met a few minutes prior).  The fight between the two anesthesiologists over who was going to get to carry Riley back to the OR lightened the mood a bit….but once again, handing our child over and saying a temporary “goodbye” never seems to get easier.

Forty minutes went by, and then we see the surgeon coming out into the waiting area to locate us.  He appeared pretty “chill,” so I immediately was relieved, but felt anxious to hear the results of whatever he may have found during the procedure.  He starts out by saying something like “Well I did remove the cysts,” and I stopped him from going any further and said, “Wait, did you say cysts, as in plural?” and he confirmed, “Yes, cysts,” emphasizing the /s/ sound on the end of the dreaded word.  “We found 4 cysts, and removed 3 of them,” he said, explaining that the 4th cyst was not removed due to its location (directly across from one of the other cysts he removed) as he was afraid that scar tissue would develop if he removed both of them at the same time.  He mentioned that Riley’s stenosis is pretty much unchanged from the previous visit, and her airway continues to exhibit some narrowing.  “I’d like to see her back in 4 weeks to remove the 4th cyst.  And then we will need to see her back in the OR  and scope her again about a month following that procedure to ensure her airway is free of cysts and to reassess her stenosis. ”  Great.  Looks like this is far from being over.  I look at Ian and he has on what I call his “NICU face”…a face filled with sadness, fear, and frustration.  I felt the same way.

Wow.  As much as Ian and I both knew something wasn’t right with Riley, this was news that sort of smacked us across the face like snow on the first day of spring.  We just didn’t expect this.  The surgeon answered our many questions, including how long will this go on and how many more cysts could she develop, both of which the answers are unknown.  This is not something she will simply outgrow.  It all stems from her being intubated while in the NICU; however, every time she is scoped, there is an increased risk that another cyst could develop from that irritation, creating somewhat of a vicious cycle.  The sense of relief Ian and I have been craving was nowhere in sight.

Riley recovered from the procedure like a champ.  She couldn’t have been a better patient for the nurses, many of them wishing their other patients could be half as smiley and content, and we even had an immediate offer when Ian expressed his potential plans of putting her up for adoption (jokingly…I think).  Her breathing remained mildly wheezy sounding, but otherwise one would never suspect she just had surgery on her airway.

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I don’t need this oxygen mask…maybe you should offer it to one of my parents.

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After a long sleepless night in the ICU, we were discharged the following morning.  Riley continued to do well throughout the day, smiling and playing like nothing ever happened.  Ian and I both agreed that we felt her recovery was going to be much smoother this round (as compared to when she had the cyst removed in December).  We may have jinxed ourselves…

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I’m ready to go home now!

In the middle of the night and very early into Wednesday morning, Riley’s breathing sounded quite a bit worse and appeared more effortful, although she continued to be Riley, appearing unaffected.  As 5:00 am approached and after giving her a dose of meds, she continued to sound pretty bad, warranting an emergency phone call to the ENT on call.  After describing Riley’s case, he felt that we should bring Riley into the ER to have her assessed and err on the side of caution.  Talk about dejavu…

After another dose of steroids in the ER, it seemed Riley was finally put on a smoother path to recovery.  Seems like we’re again on the upswing, and out of the woods for now.  For now…

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8 months old and hitting a little pothole…

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Wow is time flying!!  Riley is already 8 months old…in 4 months we’ll be celebrating her 1st year birthday.  It’s hard to believe.  She continues to grow and thrive, and is now sitting up all by herself, rolling over and getting stuck on her belly, and continues to tell us stories in her own language.  She has mixed feelings about exploring the world of solids, and sometimes can’t stop herself from blowing raspberries when she has a mouthful.  We’ve started training her to drink out of a shot glass (listen, it was recommended by the nutritionist and I swear it’s water), and she can hardly contain herself from grabbing it right out of our hands.  No teeth yet, but they’re definitely on their way!

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This chicken wing could definitely use a little more hot sauce…

Riley celebrated her first valentine’s day, and I encouraged her to try and enjoy it now, as daddy continues to remind her that she’s not allowed to have a valentine until she’s 30.

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Wait, dad said what?!?!

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Riley and I have both been very thankful for the recent change in weather, as we’ve been able to get outside a bit and go for an occasional walk.  We’re looking forward to the end of RSV season (end of April), which is when Riley will be making her official debut out into the real world (beyond Children’s Hospital and the doctor’s office).  She had her final synagis shot today, so we’re beginning to see the light at the end of the snow covered tunnel…

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Guess who was watching me when this picture was taken??
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Note to self…if you’re going to spit up, it’s not cool to face plant in it.
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I’ll be your Easter present if you promise to give me a basket filled with chocolate eggs and jelly beans in return. Secret is safe with me.

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Speaking of Children’s Hospital….it looks like we’ll be making a trip there for reasons we’re familiar with, but not too excited about.  Over the past few weeks, Riley has started to have a little bit of that noisy breathing coming back.  It’s nowhere near where it was when we discovered 80% of her airway was blocked by the cyst growing in her throat, but it’s  something that we’ve certainly been noticing and has continued to creep up on us.  She occasionally sounds “junky” and “wet” when eating solids, which I know is not a good sign.  I called the ENT (Ear, Nose, and Throat doctor) to inform them of our observations, and initially we were told that since she’s not turning blue or choking (thank goodness those days are over), and since it’s therefore not an emergency, they could schedule her in the beginning of April to check things out.  That sounded good to us.  However, over the past few days, as her symptoms have gotten a tiny bit worse and their occurrence more consistent, I decided to make another phone call since I had plans to bring her to my parents this week, traveling across the state, and wanted to feel comfortable doing so.  Turns out the docs are now more concerned.  They feel Riley needs to be seen in the OR on Monday.  This was a little surprising to me given that we were not even sure if there was an issue and this phone call took place on Wednesday of this week.  They will put her under again, scope her, and re-assess to determine if the cyst has grown back and/or if her stenosis (the narrowing in her airway) has worsened.  Here we go again….we knew there was a chance the cyst could grow back and that her stenosis, although typically outgrown, could worsen.  However, I think Ian and I have been on such a high lately with all of Riley’s great strides and progress, that we had temporarily put the “what ifs” aside.  We know she’ll be fine, but it’s something we just hate to see her have to go through…again.  Poor kid.

Thanks for the thoughts and prayers in advance:)

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First big outing, green mush, snow angels, and more good news!

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I apologize that I’ve been slacking and it’s been so long since I’ve made my last post.  I figured I’d wait until we had lots to share, including good news, new milestones, and entertaining pictures.

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Riley had a couple of appointments at Children’s Hospital yesterday, including one at the developmental clinic (which is a standard follow-up appointment made for you if your baby spent enough time in the NICU to assess her developmental progress), as well as the Ear Nose and Throat (ENT) doctor, to follow-up regarding Riley’s subglottic stenosis and cyst removal.  The ENT was pleased with Riley’s ongoing progress.  He continued to express that he isn’t overly concerned about the mild swelling in Riley’s throat, but that we should notify him if she starts demonstrating symptoms again.  She just needs to continue taking her reflux meds for the next 6 months, at which time we will schedule a follow-up appointment.  Riley also rocked the developmental check-up.  She was shown random pictures in books, new and fun toys full of textures and noise, clueless that all the while she was being tested.  She did everything she was asked to do and more, and showed the developmental specialists what she’s capable of!  She scored in either the superior or high level range across the various domains they assessed, including fine motor skills, cognition, gross motor skills, and speech and language.  You go girl!!

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Let’s see, which one is going to be the victim of my drool today???

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The big news…Riley had her first trip home to Nanners and Nonno’s house (also known as the Nanno’s)!  My mom took the train in to Pittsburgh so she could accompany me and help out with the 5-6 hour car trip across the state to Nazareth.  Riley couldn’t have been a better car companion, sleeping most of the way, and otherwise looking quite content and happy, curiously staring out the window.  The week long trip home was fantastic.  Riley finally got to eat, sleep, cuddle, and play at her grandparents house…something they and I have been wishing for and dying to do since the day she was born.  Adjustment wasn’t an issue, as Riley immediately slept through the night in the pack and play without any problems, and continued to eat and play as she normally does, acting like she’s been hanging out there her whole life, in her glory with all the attention she was receiving.  It was beyond amazing to have my entire family together in one spot, watching everyone enjoy and interact with Riley, finally!! Even Ali (the dog) got a little taste of Riley Mae!   I thoroughly enjoyed having a little respite myself, getting to venture out to the mall with my mom, having a lunch out, and watching my parents tend to Riley’s needs, especially when it came time for those diaper changes:)  Speaking of diaper changes, the great car companion feeling went out the window on the way home following a massive explosion.  We pulled over at the closest rest stop, and my mom and I were forced to change her in the front seat, on our laps, as there was no way we were bringing her inside the germ-infested rest stop.  Well lets just say in between dry heaving and cracking up, we got through it…but it was no easy task.  This was a 3 onesie destroyer, and my mom even managed to get a small amount of evidence in her hair, making it impossible to take the messy situation at all seriously.  Oh, Riley!

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Bath time at the Nanno’s is the best!

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The peanut also had her first experience with snow this past week.  I decided to take her out, as I felt the need to put her adorable snow suit from her other grandma to good use.  Lets just say it took longer to put Riley in the multiple layers than the amount of time we lasted outside.  The attempt at snow angels was a complete failure, as Riley quickly protested, becoming quite angry and a bit devilish.  I couldn’t tell if it was the snow and the cold or the snowsuit and the fact that she was unable to move her limbs that caused the horns to come out:)  Oh well…it was worth a shot, right?

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I can’t move and there are freezing cold white things hitting my face!!!

Finally, Riley has been on the pureed vegetable adventure for the past couple of weeks, and her feelings about it are mixed.  It seems to depend on how much she can be convinced that she’s having a good time and enjoying the taste through mom and dad’s obnoxiously loud cheers and singing.  If she could talk, which we’re still working on, she would tell you that carrots are her favorite, which we just started today, followed by avocado.  Green beans and peas are on her “you know what” list.  Can’t say I blame her.  Smart girl.

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Ok enough of the green stuff already…
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if only you guys knew how your animations and singing looked from this view…

So there have clearly been a lot of exciting things going on in our lives lately.  Riley still sees several different therapists weekly or biweekly through early intervention services, which keeps us busy.   She continues to gain weight slowly but surely, coming in at almost 12 lbs now.  She’s still off the charts for both her height and weight, but we’ve decided those are just numbers and given how well she’s doing, they’re numbers we don’t really care to be too concerned about at this time.  She will always be our little peanut, whether she’s on the charts or not:)

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This is the pout face I give to my therapist when she tries to make me do things I don’t want to do.
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A selfie dad and I took when mom left us for an afternoon…at least dad is putting those face masks I got him for xmas to good use!

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A half of a year old…

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Yup, my mom has lost it. The cold weather has gone straight to her head!  

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Riley turned 6 months old yesterday, which sounds so old (in baby time anyway) and is hard to believe.  She continues to grow, coming in at 11 lbs during her last weigh in!

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Heading to the doctor’s office!
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Some things remain the same….
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That was a bad one…

Santa was good to Riley.  Very good. Here I thought we were all taking advantage of this year, saving our money, since she’s too young to understand the whole Santa ordeal.  Guess I was wrong:)  Riley continues to do something new everyday.  She’s much more interested in her surroundings, following us around with the room with her eyes, staring at the television, appearing interested in the news, and playing with toys that I thought she’d have to grow into.  We’re continuing to work on all the usual milestones (rolling over, sitting up, holding the bottle, etc.), and she’s definitely getting the hang of it all.  She’s talking up a storm, and even verbalized her first profanity on her birthday, (“Oh sh**”) following a big yawn and a sigh.  This happened while we were face timing with my parents, so I have witnesses and confirmation:)

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I said what?? Is that bad?
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Yup, my parents sit me at the dinner table and eat in front of me and do you see what I have on my tray? Nothing.
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Hey, what’s with the toys?? I want some food!

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I often look back at the pictures from the beginning of Riley’s life, and sometimes reminiscence about those days in the NICU, and I have such a hard time believing that she’s the same kid…that she wasn’t swapped with another baby somewhere along the way.  Every expression, every movement, every coo we are so grateful for…these moments are never taken for granted.  I’ve never seen anyone with chubbier cheeks or bigger smiles.  She continues to entertain and amaze us everyday!

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Practicing for my future modeling career…How’s this face, ma?

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Positive news with Santa on his way…

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The morning of the procedure…      

Friday was certainly a long day, but it really couldn’t have gone better.  We reported at our scheduled time, and the got Riley’s vitals (temp, weight, height, etc.), and then we waited for the anesthesiologist and surgeon to come and talk to us.  And waited….and waited.  Turns out they were stuck in another procedure that was taking much longer than expected.  As we waited, Ian and I were just thankful that it wasn’t our kid that was stuck in the OR longer than planned.  I suspected and sort of expected Riley would potentially be a terror during this time, as she hadn’t eaten since 6am, and morning are usually when she chows down, eating every 1 1/2 hours to 2 hours.  However, not our girl.  She must know Santa is on his way, because she was so chill and content, it was almost weird.  The nurses and doctors continued to comment on how good she was, and she’d give her little smirk and continue sucking away on her pacifier, using her imagination and pretending there was some liquid gold coming out of it.  It seemed to be working.

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They need more stylish hospital gowns around this place…

Then came that dreaded moment…handing her off at the doors of the OR.  I was hoping she’d be sleeping so we could avoid eye contact with her before kissing her goodbye, and then they’d put her to sleep and she’d wake up, not having any clue that we ever left her.  However, not Riley.  She was of course awake and alert.  However, we held it together, and it seemed a tiny bit easier this time, maybe because there was less of the unknown.  We went off to the waiting room and we sat there watching a little boy play with the one and only toy we got Riley for Christmas.  How ironic.

We weren’t in the waiting room for 15 minutes before the surgeon came and found us.  I couldn’t help but initially feel panic (although I knew the procedure would only take a few minutes if all went well), anxiously awaiting those words you’re hoping to hear…”Everything went well.”  Phew.  Thank goodness.  He continued on to explain that Riley’s cyst had not grown back, and her stenosis (the narrowing in her airway) is mild and will likely clear up on its own, as it does in most kids.  Another phew.  This was fantastic news.  He added that he observed some swelling just below her vocal folds, and attributed it to her reflux.  He wants to put her on a different, stronger medication, and would like to have her follow-up in the airway clinic in 6 weeks for a general check-up.  Not too bad, Riley Mae!  We’ll take it.

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Why do I see three of you, ma?

They immediately took Riley over to recovery and we had to wait for her to wake up before they take us over to see her.  Well for Riley, that was within minutes of being transferred over there.  Only she would come out of general anesthesia wide awake and raring to go.  She initially sounded a little raspy and had a dry, hoarse cough, but after a feeding and some time, she almost instantly sounded better.  We spent another 3-4 hours in recovery, and were sent on our merry way.  Another bump in our journey that we’ve cruised right on through (adding on just a few additional sleepless hours and probably a few more gray hairs).

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Yup, my Uncle Ry came to visit this weekend, which is the ONLY reason I’m in this darn Flyer’s outfit again. Not happy about it.

Back to smiling, pouting, playing, and photo shoots.  Looking forward to her first Christmas, feeling so thankful for everything we have this year…the best gift ever.

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This hair barrette may be a little big, ma. But I’ll try not to move so it stays on my head…As long as Santa comes…

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Emerging personality and the explosive evidence…

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Life is good. Ian and I had a nice night out at his holiday work party this past weekend, an excuse to dress up and feel like a normal human being for a few hours.  Riley was in the hands of her grandmother and aunt and was an angel, of course.

Riley is still nursing, which is going pretty well, and she also gets 2 bottles with formula to supplement the breast milk because somehow she’s not gaining enough weight.  Last week the nutritionist who comes into our home bi-weekly weighed Riley and she was 9 lb 13 oz.  This was only a 4 oz increase from her last visit.  Riley has always been off the chart (below the 3rd percentile) on her weight chart, but she’s been on her own little growth curve, and as long as it’s going in an upward direction, we’ve been told we’re good to go.  Well last week, the curve flattened out a bit.  I’m personally not concerned and know she will catch up.  I continue to ask those who are concerned….”Have you seen her cheeks?”  Apparently that’s not enough.

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I’m cool with a walk, but the hat…really, ma?
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Holy hell, so that’s what fresh air feels like?!?!

Riley’s personality continues to emerge, and I become slightly more fearful each day, wondering that if she’s like this now, what the heck is she going to be like when she’s two.  Not excited about her “terrible two” stage.  Don’t get me wrong, I couldn’t ask for a better baby, but she has little “Riley-isms” that crack me up and make me scared shitless at the same time.  This also concerns me because when she’s old enough to be disciplined, she’s going to be that kid that does something bad, yet hysterical, and as parents we’re going to struggle, trying to keep a stern look in between cracking up.  Talk about sending mixed signals…she’s going to be all sorts of confused.  It’s gonna be bad.

Her hair is starting to match her personality, balding on both sides and uncontrollable craziness on the top:)

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Riley has just recently developed a pout face.  She uses it when she’s not really mad, but wants to get your attention, letting you know that she’s not getting exactly what she wants.  She literally pushes out her bottom lip and pouts.  No clue where she picked that up from…but it works.  It’s pretty adorable.  For example….the developmental specialist came to the house today for therapy.  Riley and I greeted her at the door and gave her a cute smile as soon as she said hello.  Well that was short lived once Riley remembered her and realized her purpose.  She wanted NOTHING to do with this therapist today.  Everything that Riley does on a daily basis (i.e. reaching for toys, tummy time, holding onto small rings, putting her hands together in front of her), which are all her goals and what this therapist is addressing, Riley decided she wasn’t going to do today.  She cried the minute she was put on her stomach (which she never does), and as the therapist would take Riley’s arms and try to bring her hands to the center of her chest, Riley would just as quickly fling her arms out to her side and protest.  The therapist would place a ring in Riley’s hand and she’d drop it immediately.  And the pout face…boy did that make an appearance.   I saw it more in the 45 minute session today than I’ve ever seen it.  Riley was looking at this chick like “What don’t you get??  I’m able to do what you want me to do, but because you want me to do it, I’m not doing it.  Leave me alone.”  Riley got her wish:)

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For those with queasy stomachs, or if you’re in the middle of consuming a meal, please discontinue reading or put the fork down.  I wanted to share with all of you some evidence of Riley’s explosions, as they’ve become an infamous mention in many of my posts, and thought it would only be fair to let you see it for yourselves.  This one occurred shortly after a meal while sitting on mom’s lap, and I knew it was coming, but even I was impressed with the outcome.  She timed it perfectly…a few hours after a bath.  Needless to say, another bath was in order.

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Please note the onesie…how ironic…

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What’s wrong with some extra bath time??

Tomorrow is a big day.  Riley has her 2nd scope procedure to make sure her cyst has not grown back and to re-assess her subglottic stenosis (the narrowing in her airway).   We’re feeling good about it, but anxious to get it over with.  My hope…a clean bill and maybe a follow up in 6 months.  We’re scheduled to arrive at 9:15am, and the last time Riley can eat is 6:30am.  She’s been eating every 2 hours today, so it may be a long morning.  I have to admit there is one part of tomorrow that I’m particularly dreading.  It was the hardest part for me during her last procedure….handing her over to the medical team at the doors of the OR, kissing her goodbye as she looks you straight in the face, having no clue what’s going on, and placing her in the hands of strangers.  It’s pretty terrible.  However, we’ll get through it.  One more bump in our road that we will certainly get over.  This is nothing in the grand scheme of things:)

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At least I don’t have the mumps:)

Happy Birthday, Riley Mae!

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At least we’re in this together, Mr. Giraffe!     

Can’t believe Riley is 5 months old today!!  It’s strange to think that her adjusted age is only a little over 2 months, because she’s growing so fast, and it seems like she’s doing something new and fun every day.  She’s been talking up a storm, and I can only imagine what fun stories she thinks she’s sharing with her toys, us, and the wall.  Ian and I have been trying to teach her how to say a handful of words, including mama and papa, but she’s not quite there yet;)  Riley was up to 9 lbs 9.5 oz at the last weigh in (Nov 12th), and we feel she’s been growing like a weed ever since.  Ian and I pulled out the tape measurer a few days ago and she’s about 23 inches in length!  She’s growing into this little girl already, which is both exciting and scary.

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I think my eyes are growing, too!

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Riley’s sleeping couldn’t be going better (knock on wood).  She’s not a big fan of sleeping during the day, fighting her naps, afraid she’s going to miss something.  However, she’s been sleeping through the night for the past 3 nights, so lets hope she keeps that going.

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Yup, just got 9 straight hours of sleep. Feels good.
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Why do you insist on making me sleep during the day, ma?!?! Please get me out of this crib!

We had a nice turkey day, although I have to admit it really didn’t feel like the holiday with it being just the 3 of us.  We made a turkey breast, some fun sides, and a chocolate pumpkin pie, and had a few beverages, carrying out all the usual traditions…trying to make it feel more like Thanksgiving.  Riley slept nearly the entire day, acting like she had overdosed on turkey and had a tryptophan hangover.

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Did someone say turkey?

We hit a small rut with the feedings a week ago, as Riley decided to give us a tough time with taking the bottle.  She decided she just wasn’t feeling it, and we felt like we were back to force feeding her…feeling pressured, knowing how important it is for her to gain weight and get adequate nutrition, counting every millimeter, tracking it on a spreadsheet.  This went on for about 2 1/2 days, and following many trial and error sessions with different bottles, nipples, and formulas,  and a near-call to the pediatrician, she turned a corner.  We’re not really sure the exact culprit for her behavior or what fixed it.  However, once she regained her appetite and desire to eat, it was on.  She wanted to make up for lost time, wanting to eat every hour and a half to 2 hours.  We felt like we had a newborn all over again.  We didn’t care…as long as she was eating.

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Speaking of eating, I was told by Riley’s occupational therapist (OT)  that if I planned on nursing, I need to do it sooner rather than later.  I had mentioned to her that I still did plan on trying it once we got in some sort of rhythm with the bottle feedings, which still hasn’t happened.  The OT was afraid that Riley may not be able to transition from the bottle and that it would be too difficult for her to learn if I waited much longer, and felt it may already be too late.  I decided later that day to give it a go and just see what happens.  I didn’t have high expectations and was sort of prepared for failure, getting ready to yet again renew the pump that I’ve been renting since July for the next several months.  However, I was excited at the idea of not having to clean bottles and pump supplies several times a day, and was already making plans for what I could do with the free time:)

So remember that boxing match I compared our initial nursing experience to?  Well, lets just say that hasn’t changed much.  However, this time we’re actually getting a reward after the fight.  She’s been nursing for almost a week now, and I’ve had a few toe curling, yelling-out-loud moments, but overall, it’s been successful.  Is nursing this glorious, relaxing mother-bonding experience that I couldn’t have lived without, and do I plan to continue breastfeeding her until she’s in kindergarten?  Absolutely not and no way.  However, I’m thankful that Riley is eating like a champ, although, as Ian says, she now sometimes looks at me like I’m a piece of meat.  I don’t take it personally.  We no longer have to tally bottle amounts at the end of the day and worry about whether or not Riley’s getting enough to eat, there’s no need for bottle and formula prep, and my dishwashing time has been decreased significantly.  It’s been nice.

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I’m hungry…where you at, ma?
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Speak for yourself…I think nursing has been a great mother-daughter bonding experience. I’ll remember this.

Riley continues to receive early intervention services from the occupational therapist, developmental specialist, and nutritionist.  Everyone seems pleased with Riley’s continued progress.  We’re anxious to get Dec 19th over with, which is when she will have the second scope performed at Children’s Hospital to be sure her cyst has not grown back and to reassess the severity of her subglottic stenosis.  Once that’s over with, I feel like we’ll be in the clear and we can continue to focus on Riley’s developmental progress and daily quirks;)

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When you taking me to my first hockey game, dad?

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