Tuesday, January 20, 2015

6 Weeks Post-Op

We had a follow-up appointment with Riley’s cardiologist this afternoon.  It was the first echocardiogram for her since leaving the hospital last month.  Her first follow-up with cardiology was a couple of days after we returned home and it was mainly to make sure that her sternum was lined up correctly and that there were no signs of infection.

Normally I do not get nervous when it comes to office appointments, but for some reason today I had butterflies in my tummy while we were getting ready to head to the doctor’s office.  I know that she looks great, and hasn’t given us any reason to think there was something wrong, but then again, you’ve never been able to tell there was a problem just by looking at her.  I guess I was nervous because it was the first serious checkup to make sure everything was okay since the surgery. 

Riley on the other hand was all smiles and sassy poses this morning, as if to say, “I’ve got this mommy!” She is such an amazing little girl.  I am in awe of her.  She is happy, strong, smart, and beautiful!

  IMG_20150120_112349418           IMG_20150120_112342540

Riley was a little nervous once she realized we were at the doctor’s office, but that didn’t last long.  It was “Princess & Pirate” day so there were pretty decorations everywhere and all of the staff was dressed up.  IMG_20150120_160735311She got to pick a prize from the treasure chest at the downstairs reception area, and she picked a pretty purple bead necklace.  The receptionist also gave her a sticker, and her invitation to the royal celebration in the cardio department and directed us to take the Princess elevator to our destination.

There are two elevators and one was decorated with pink and silver ribbons and the words “Princesses Enter Here” over the top.  The other was decorated for boy pirates, but we only paid attention to the princess elevator.  When we got up to the cardiology department, the receptionist gave Princess Riley her very own Princess bracelet, complete with sparkling silver crown.  It was truly amazing to see all of the details the staff had put in place to make a doctor visit a magical experience for the children.

We had our echocardiogram first, and Riley began to panic a little when we first went into the room, but once I got settled with her on my lap and the tech put Frozen on the television she calmed down.  In fact, this was the fastest echo we have ever had done.  Riley didn’t fight, squirm, cry, or push the tech’s hand away like she normally does.  She was really happy when Daddy surprised us by walking into the room.  He had been working, so we didn’t expect him to be there today.  The echo went so fast that we ended up waiting longer than normal for the doctor, but that was okay because Mommy brought animal cookies and Gatorade to snack on and we watched Wreck It Ralph on Mommy’s phone while we waited.

When the doctor came in, we knew it was good news immediately.  She was very happy with the way things look, and told us that we can stop one of the medications that Riley has been on since the surgery.  An even better indication of how good things are is that we do not have to go back for 2 months instead of the normal 4 weeks!  It was such a relief!

Our warrior princess is doing great, and we could not be more proud of her!

Saturday, January 10, 2015

Technology comes naturally…

Life is full of little moments that you never want to forget.  This is especially true when your life includes a toddler.  So many little moments that you never want to forget.  Today in the life of Riley, we had one such moment that I would like to share.

Imagine if you will, daddy is sitting at his desk doing something 20141129_105600on his computer, and Riley reaches up with both arms and says, “Bupupupupup!”  This is Riley speak for, “Up!”  Daddy picks her up and sits her on his lap and continues to try and do what he was working on,  but the only reason that Riley wanted up was to push buttons on the laptop.  Daddy, of course, told her no, and closed the laptop to pay attention to her.

The scene that followed was dominated by a serious temper tantrum performed by Riley, complete with Oscar-worthy tears.  She started crying, and over the last week or so, she has developed this growling cry that she uses whenever she is told no.  The only part of the stereotypical temper tantrum that she has not mastered (as of yet, but I’m sure it’s coming) is the prone position on the floor kicking and flailing her arms.

After a couple of minutes, I took her into the living roomIMG_20141224_200117369 where all of her toys are. I had the brilliant (read sarcasm here) idea to distract her with the “laptop” and “tablet” that she got for Christmas.  I started with the tablet. (This picture is from Christmas gift opening, not from today.)  I turned it on, and pressed a button and tried to get her to take it.  Well, she took it, and threw it down on the floor and proceeded to stomp on it.  She was trying to make it stop playing music and blinking lights at her, but each time she stomped it, she hit the button which just made it start the song over. 

The look on her face was priceless throughout this whole tantrum.  It said very clearly to me, “That is not a tablet!  It does not do any of the neat things that your iPad does.  It blinks stupid baby lights and plays some stupid sing-songy thing that is supposed to be music, but it really isn’t! I do not want that baby toy, I want a real tablet!”

Ever the optimist, I tried the laptop next.  Again, I turned it IMG_20141228_160653918on, and pressed a button to make it start talking to her.  (Again, a picture from a couple of weeks ago, not today.)  The look she gave me was, “why are you trying to make me play with a baby toy? I’m not a baby, and I don’t want to play with baby toys!”

I managed to bit the inside of my lip to keep from laughing at her during this, but it was a close call.  Here my not-quite-19-month-old daughter is already giving me the looks of a teenager who thinks that mom knows nothing!  Oh my word we are in so much trouble when she gets older!

Finally, in order to protect the toys from utter destruction, I pulled out the teapot set she gotIMG_20150105_195832973 for Christmas and “poured” us a couple of cups of “tea.”  I drank first, making the appropriate slurping noises that are expected, and the crying stopped.  She took a “drink” and held her cup out for more.  I immediately “poured” us another, and the tea party was in full swing!  Temper tantrum ended, and mommy’s nerves saved for another day!

She will be 19 months old on the 14th, and she already has a very distinct personality.  She is stubborn.  She is smart.  She is beautiful. She is willful. She is, quite simply, amazing, and she only gets more so every day!

Friday, January 9, 2015

One month later

On DeceHappy girl getting to go home today!mber 9, 2014, Riley had her second open heart surgery.  The surgeon told us before surgery that we could expect her to be in the hospital for 7-10 days post-op for recovery, so you can imagine our surprise when they started talking about sending her home on day 4.  They decided to keep her for one more night of observation, but we went home on day 5!  The doctors and nurses where all very impressed with how well she was doing, and at how strong she is.  Especially after she kicked at the doctor and two nurses who were trying to hold her down to remove the breathing tube after the surgery.



It seems like it has been longer, but today we are one month post-op.  Riley continues to do very well, and we could not be more proud of our little warrior princess!  She plays and gets into everything, she’s fully into the “terrible twos” even though she is not quite 19 months old yet, and she is such a happy girl. She is a little nervous anytime someone comes to the house, and even more so when we take her out of the house.  I’ve read that this is a normal reaction, and hopefully should pass soon. 

Happy girl at bedtime

The only problem that we are having at this point is that she is a rough and tumble kind of girl, and we are still under sternal precautions to make sure that her bones knit back together properly.  We have to scoop her up rather than picking her up under the arms like you normally would.  She wants to climb and swing and wrestle around on the floor, and these are all things that we are not supposed to do for at least another couple of weeks.  How do you make a toddler know that playtime has to be different for now?  You can’t



We are 5 days away from her turning 19 months old, and in that time she has had 2 open heart surgeries, 3 heart catheterizations, and too many doctor visits to count.  We have made a total of 5 trips to Gainesville for her to get the care she needs,  It is easy to focus on these parts of life with our CHD baby, but the truth is we don’t.

She is a happy little girl who plays and explores her world fearlessly.  We treat her like we would any child her age, because unless there is a problem, that is what she is. Yes, Riley was born with a congenital heart defect.  Yes, she will have to have a cardiologist for her whole life.  Yes, she will have more surgeries and procedures as she gets older.  No, these facts do not define her or who she is. 

She is strong.  She is a  fighter.  She is curious. She smart.  She is beautiful.  She stubborn.  She is happy.  These things define who she is, and who she will become.


Saturday, January 3, 2015

Christmas 2014

Before our trip to Gainesville for Riley's open heart surgery, we were not sure how Christmas was going to turn out, but everything went very well.  We did all of our shopping online except for stocking stuffers, and everything was delivered the week before Christmas.  We made the joke that we were going to have an Amazon themed Christmas, and Riley seemed okay with that idea!

I forgot to get a picture of the tree with all of the Amazon boxes, but these give a pretty good idea of how it looked.

This was the tree after everything was wrapped and back in place.

Riley was fascinated with the blue bows on some of the packages and only the blue ones.  Every time we turned around she had pulled a blue bow off and was playing with it. We ended up opening the grown-up gifts after she went to bed the night before Christmas Eve because we were worn out from telling her "no!"  Everyone got exactly what they asked for, and it was a fun evening.

On Christmas Eve, we went to my parents' house for dinner and gift exchanges.  My mom put all of Riley's presents in gift bags instead of wrapping them, so it was just hand Riley a bag and watch her pull stuff out of it.  Little did we know she was formulating a plan while sitting on daddy's lap and watching everyone else open gifts.

When we got home, the plan was to get her ready for bed and then have her open her presents Christmas morning.  Well, at least that was our plan.  Within 5 minutes of being home, she had started pulling gifts out from under the tree and was ripping them open.  She had a grand time, and as with most toddlers, she was more interested in the paper and boxes that what was inside them.


She got her own tablet and laptop, a play and learn puppy, and a puzzle/activity box with abacus style topper.  Her favorite new toy by far was the singing teapot and cup set that daddy got for her.  While I was taking pictures and video, she hosted a 20 minute tea party with daddy.

When it came time for bed (90 minutes later than normal) the teapot had to go to bed with her.  Any time we tried to put it up she would start crying, and the only way to calm her down was to give it back to her.  Now, a week and a half later it is still her favorite toy, but she is willing to spend a little time with other toys. 

On Christmas day we had a lazy day, playing with toys, and enjoying having the whole family at home.  I baked some sour cream cookies, and we nibbled on cheese, cheese balls, crackers, and a shrimp platter throughout the day.  

After everything that our little warrior princess has been through in the last 18 months, it amazes me that she is such a happy little girl.  She amazes me every day (even when she's driving me crazy with her "terrible two's" behavior.  Yep, she's 18 months old and fully into the behavior of "terrible two's."  It is our hope that since she started early, maybe she will stop early too.  

Anyway, I hope that you had a wonderful holiday as well.

Until next time.