Two Years and Counting

Two years ago today, we went down to the NICU wayyyy early in the morning while the lights were still dim to see Olivia as they prepped her for her first surgery.  She had only been born four days earlier and it was a little sooner than we were expecting, but I remember feeling relieved that we were just going to get the action going. She had been intubated since shortly after delivery and on IV nutrition and fluids.  By that fourth day, she had two little black eyes from all the fluid retention and I had never even seen a glimpse of her with her eyes open.

She had her little angel lovey tucked next to her and a light lavender hand knitted skull cap on and that was it.  Brian and I made sure we took all the pics that we could, especially of the moments where I sat in one of the chairs and the nurse gently plopped Olivia, bedding and all on my arms where I awkwardly held her.  I could feel the weight of her, but I couldn't actually hold her close to me for fear of knocking something important out of place.  So we just looked at her and wondered would we see her again with life in her.  Not a follower of an organized religion but definitely someone who has faith in the powers that be; I requested a chaplain to come and give her a pre-operative blessing.

After fifteen or so minutes the nurse took her back from me and they continued to get her ready to wheel her down to the OR.  Once the surgical team came to get her and all her "gear" we decided to leave rather than walk her right outside the OR.  It was with heavy hearts that we left her but knew that this had to happen for Liv to have any chance of normalcy.  Back at the room, the phone calls started to come regularly from the staff with updates; essentially hourly and then we would pick up the phone to call our families to keep them in the loop and before we knew it - it was done.  She had made it and we just had to worry about the next 24-48 hours before we could start thinking about what was next.

To look at her now it's hard to believe she's the same baby that was so sick and vulnerable two years ago.  She's so full of life and love.  How do you put a measure of gratitude and relief into something as precious as this?

Oh Cath, So Unpleasant to Talk About You

Cath, as in heart catherization.  As in the precursor to Olivia's next surgery the Fontan.  Tuesday, April 3rd is the day.  We were at a birthday party this past weekend for Olivia's heart buddy Keaton (he also turned two!) and one of the moms asked me if we were really going to be "Fontanning" this summer.  I chuckled and said I'd prefer to be getting a tan, but Fontanning is what it sounds like is on the agenda instead.

As prep, Olivia needs some blood work done in the event they're going to do anything during the procedure like place stents or coils and want to keep some extra blood on hand just in case.  Blech.  Since she is the very first case of the day; I believe because she's earned quite the reputation for herself, they will not do her blood work on the same day as the procedure.  So now that means that Brian and/or I will need to take in on Saturday or Monday for the blood draws to get the lab work done and have it for Tuesday's procedure.

If all goes well, she'll be out later on Tuesday.  If they do anything in the way of ballooning, stents or coils, they keep the kiddos overnight for observation.  On top of this bowl of cherries Little Miss is going to the pediatrician today for her two year checkup.  As if that wasn't bad enough, she's due for her last round of synagis and at least a tetanus shot.  The last tetanus knocked her on her tushy for a couple of days so we'll see how this one fares.

Olivia has had every single procedure on the birthday of someone significant to us and this cath falls on my Uncle Greg's birthday so I hope that's a sign of good things to come.  When it comes time for the Fontan to roll around, the hospital is just going to have to work with superstitious me to find a date that happens to fall on a family birthday.  With a family as large as mine, it's hard not to have a birthday every few weeks so they better deal!

For the nitty gritty, yes this is a routine procedure done at the hospital.  Yes there are risks associated with it as Olivia will be sedated, intubated and then they'll be running a line through her femoral artery  up to her heart to measure pressures and gradients.  As I just typed that out, I do wonder if they will go in through her neck instead to review the size of her aortic arch - not really any better, but maybe it won't be as restrictive to her mobility.  Either way, there's always a risk of excessive bleeding, running the risk of puncturing something that obviously shouldn't be and I'm sure the waive that I sign before the procedure will list death as a potential risk as well.

I thought long and hard about what shoes to wear today before I came into work.  Next Tuesday morning, we're going to send a screaming Olivia off on a gurney and think long and hard while they're working on our baby and just pray that she comes back to us exactly how we sent her in.

One Fish, Two Fish, Olivia's Birthday Wish

Happy 2nd Birthday Olivia!



Miss Olivia is indeed two years old as of 3:17 this afternoon.  Two whole years, one heart cath, two open heart surgeries and a whole lot of living.  To think that Liv came into the world quacking like a duck and whisked off to the NICU immediately after delivery has now grown into a solid, inquisitive, stubborn toddler is just a miracle to behold.  She is so full of life and has even more personality than I knew a kid could have without having a huge vocabulary.  As one of her uncles worded it best this past week "For a little girl that doesn't say many words, she sure communicates exactly what she wants".  Ummm yes, my girl is not shy about what she dislikes and even more about what she likes. 

Today in honor of her birthday Livvy had both parents at her disposal and we took her to the Shedd Aquarium.  I thought she'd be super excited given that Fish is one of the words that she knows, recognizes upon sight and loves her little pet fish Valentino.  Even I couldn't have predicted how happy she would be to see all the exhibits, sometimes underestimating even my own child.  And love she did, when she was finally turned loose into the very first gallery, she ran up to the huge tank and hugged it.  As she saw fish and penguins, she made sure to give her Dad and I each a hug and kiss as if to say "Thank you, this is the BEST day ever!".  Heartmelting for sure. 

I can't even summarize what this past year has been like to watch her change on a daily basis, but amazing is about as close as I can get.  No medical intervention, no really sicknesses, just fun and life in general.  Every day with Olivia is a blessing and can't be taken for granted, now ask me again when she's doing her little foot stomping and screeches; hopefully my answer won't change. (Wink). 

For now, I'll leave you with a few pics of the amazing transformation that's happened over the course of the last 24 months.



Short Sleeves? I Think NOT

Florida is T-3 daysish and Olivia has decided that she is completely against the idea of short sleeves.  I don't just mean a little bit, I mean hysterically crying, ripping the short sleeve shirts off of herself like something out of The Incredible Hulk.  Her Grammy told me the other day that she asked for long sleeves, but it was plausible to think that it was still kind of cool outside and she wanted to stay toasty. Yesterday in 80 degree heat there was no denying that she was warm but still wanted her long sleeves on. Why you ask?  I have absolutely no idea!  Thus, we are left with about 72 hours - really 36 of them with Olivia awake where we shall try to convince her, bribe her whatever it takes that short sleeves in Florida when its 85 and humid are really the thing to do and she should just roll with it.

Easier said than done right?  Yup

My Motherly Anxiety

Saturday morning I took Miss Liv to the mall to get some portraits done to mark her second birthday.  The portraits went over pretty well albeit it Livvy was a little stingy with her smiles. As part of her reward for being so reasonable, I said we could go walk the mall and to her favorite store there called "Furry Babies".  If you've never heard of it, it's a store that keeps puppies in real actual cribs for purchase and then also a high end pet store.  I think it's kind of creepy but she loves to look at the puppies or remark how "sshhhhh" and makes the sleeping sign about the ones curled up napping.  

The day was getting by us and I didn't really want to continue to let her lollygag around knowing that I still needed to get her lunch and back to the house for naptime.  So what's a mom to do that doesn't bring the stroller in?  Why carry her 27lb daughter of course!  I scooped her up and began walking towards the store I parked the car.  As we were walking, a teenager in a hurry ran by us and brushed my shoulder and got me a little off balance.  Liv's no cream puff and I kind of staggered, put her down so we both didn't face plant.  And then, don't ask me why, but I completely played out a horrific "what could have been scene".  The mall that we were at is two stories and the upstairs has glass partitions to allow people above to look down below.  Normally Olivia likes to walk along that partition to watch everything going down below her and I'll walk by her side.  All I could think of is what if I had been carrying her near the banister over looking the first floor when that teenager ran past us?  What if I had lost my balance and Olivia actually went over the railing?  I couldn't breathe and I felt sick.  So sick that I actually had to stop and sit for a second so I didn't throw up in public. 

I have no idea why I let my mind wander there and go into such gory detail but I couldn't stop it once it started.  Once the nausea passed, we continued on with our day, but I've replayed that image often since then.  I know for certain if I ever pick her up again while we're walking the second floor, I will always stay in the middle of the walkways far away from the railing in the event I were to trip and fall on my own.  

My Fave Things About Being a Mom

Olivia,
 There are so many things that you have taught me in all the time we've been together - even while you were still cooking along in my belly.  Every day you give joy (and sometimes rain on it- hehe) and ask for nothing in return, just happy to be smothered in hugs and smooches.  Oh and don't deny you an IPod to listen to your music - that's just a crisis in your eyes.

1. Not every day is a good day, but there is good to be found in every day
2. Letting go of always trying to be serious or taking things so seriously and just kick back and laugh sometimes at yourself - you have the most beautiful belly laugh, I'd make it my ringtone if I could
3. Look at things and new experiences from your eyes; it gives me a whole new appreciation for just about everything
4. Some of my favorite Mommy/Liv time is when I'm cooking and your sitting on the island helping me or just watching everything I do - just enjoying the activity
5. Your independent and stubborn streaks - I hope that you always have the fire in your heart and soul to do what you think is best for you as you grow
6. Sometimes we as adults should just follow your lead and turn on some music and dance around just because
7. Snuggles after your baths are always appreciated, just inhaling your sweet baby smell (thank you J & J) and you're so nice and relaxed and happy to sit on my lap
8. They're fewer and fewer between but when I get to rock you to sleep in the glider for naptime or steal a nap with you.  I could just lay there and watch you sleep for hours 
9. When you're so happy with something someone's done or understood that you wanted you reach over and give them a kiss out of appreciation - if only more people could be so kind
10. Everything about you from your whispy static cling hair on the top of your head to your little baby piggy toes that have funky little toenails 

There's not a single thing I'd change about you Munch - Let's see how I feel about that when you're 13 - HA

The Birthday Month!

Olivia, like her Nonna doesn't just have a BirthDAY, she has an entire stinkin' month.  We have been so busy lately just keeping up with her and life that the blog has continued to take a backseat.  But thank you for hanging with us and looking for updates.

So here's what's new in the not so good category - Olivia has a cough, really her first one ever and after much debate and consultations Brian and I ultimately made the decision for the short term to not take her in to the doctors for the moment.  Hear me out before you roll your eyes; last week we took her in for the Feb Synagis shots and it was a miserable, miserable experience.  She's now to the point with her anxiety levels where she will actually break out in a rash on her torso while waiting in fear for the nurses to do assessment and draw up the shots.  I do think she takes the waiting and anticipation worse than the shots themselves (it may be something she inherited from her Mommy - just sayin').  Back to the cough, we cut back on Liv's dairy intake because that was just making the phlegm worse and have been giving her all natural cough syrup stuff and I am amazed how well that's working.  Her appetite and sleep have been completely unaffected, knock on wood.

On the new & good category:

• Speech therapy continues and the little lady is starting to pick up new words more quickly and use the words she does know with greater frequency
• Bet you didn't know that an almost 2 year old could be a savvy shopper - little girl actually checks all the price tags on items as she's browsing through the selections - it's hilarious
• Our FL trip is less than 2 weeks away - yep, Olivia, Nonna and I are headed to FL to see all sorts of family from both sides; it will be interesting to say the least - and yes, Cardiology has signed off on the trip
• It's getting nice outside which is great for everyone who watches Olivia because shes getting a bit stir crazy during the day when the sun is shining but she doesn't understand that it's still frigid outside and too cold to play
• Tia Nina came in to surprise the fam for this past week with a visit and she and Liv spent much time together being buddies; it was sad to see her go - I was so hoping for more contributions to the swear jar :)
• I do believe potty training is in the near future; it is hit or miss but Olivia is definitely motioning when she has to go potty right before she soaks her diaper - that's kind of considerate right?

So that's what's new here with us, last Synagis weigh-in had her at 27lbs flat.  I think she's probably lost a few ounces because she is constantly on the move and she's anywhere from 24 month to 2T clothes.  :(  I can't believe she's really a toddler now, it is just flying by.