The Pink Bow

About the only thing you can say these two pics have in common is the pink bow.  The first pic is a little less than eighteen months ago - approximately one week after the Norwood.  The picture below is Olivia in full speed, albeit a little snotty still from this week's battle with the sniffles.  Hard to believe it's even the same little girl between these and I can't even begin to tell you all the milestones that have been made between the first and second pictures.  "You've come a long way baby" sounds pretty good to me. 

Happy 18 Month Birthday!

One and a half years old - seriously?

Yep, on the bad days filled with a cranky teething monster, you can definitely envision that she's been around for an entire year and a half and really then it feels like five years because those are the longest of days.  But on the many, many good days, I cannot believe that it's only been eighteen months (really twenty-eightish months if you count the cooking time).  This little turkey has such a way about her and more attitude per square inch than I've ever seen, yeah yeah myself included in that thankyouverymuch.

Some of the latest and greatest:

• Going up and down stairs unassisted of course under the watchful eye of at least one adult if not two just to celebrate and clap at the top or bottom with Liv who's oh so proud of her accomplishment
• Unraveling the toilet paper rollls, a new fave and relatively harmless
• "Helping with Laundry" - aka taking perfectly folded stacks of laundry, knocking them to the floor and making sure to unfold every last item
• Juice - just in the last week we've seen some interest in juice for the first time
• Hugs and kisses - they are given out on request and even freely if Liv is feeling generous enough
• Talking - definitely more of it going on, just not always sure what's being said

It's been a wild ride thus far and Olivia's always got little tricks up her sleeves to throw out when she thinks you've let your guard down.  For all I know she's keeping her own blog out there to chronicle her spin on the day to day.  

Olivia, I cannot say find the words to say what a positive impact you've had on me and the way that I look at the world now.  Just know that if I had to do the previous eighteen months all over, I'd do it again and again because I love you that much.  Happy Birthday Sweet LITTLE Girl - you will always be my baby but you're definitely your own person.

Now, can we talk about this waking up at 6 am business on the weekends?  

Love Always,

Mommy

Get It Together People

By "people" I mean those of the white coat variety-specifically, the cardiology care team.  Yesterday, I heard from our fave nurse practitioner at the hospital - she texts and I love that.  I had hit her up last week to check on whether or not our Cardiologist had reviewed Liv's echo from the fiasco a few weeks back and she said she'd get back to me.  Finally yesterday I heard from her and she said that the echo looked great, unchanged from the last one in early February, function was good and while the LPA is small, there's no gradient so they are very pleased with her.  I asked about the cath of which we were most certainly told to expect and she said no cath.

So here's where I become cautiously optimistic once again in this journey.  The no cath news is what I wanted to hear after the echo was done; when I didn't get that news, I processed and moved on down the road.  Now, I'm hearing no cath and I want to make sure that's the right call.  Two cardiologists on the same team at the same hospital have two very different opinions.  So I think to muddy the waters further I'm going to ask one of our fave doctors review the latest and prior echos and tell us what he thinks we should do with a plan of action.  It's weird, I didn't want cath and now I'm pushing to make sure we don't need one knowing inevitably we may end up taking Livster in sooner rather than later. I'm a bit frustrated about it all, but then you pair that with Liv's early morning rising for the last four days (5:30 or earlier! + teething + fever) and yeah...I can see why my dad advised me not to call for a few days. :)  Good old Dad!  Yes - if you're reading these, you are my senior; thereby Old & Wise...but mostly Old.

I Had No Idea...

...when I set my my mind to creating a weekly menu that included breakfast, lunch and dinner for Olivia to correlate with dinner and enough leftovers for lunch throughout the week that it was going to take literally 45 minutes of planning, recipe searching, grocery list making and racking my brain for ideas.  Originally my plan was to make a two week planner and then hit all the stores - but I threw in the towel after I got week one accomplished.  

On the menu for the week:

• Breakfast consist of one of the following daily: yogurt with fruit & granola, whole grain bread with nutella & bananas, fruit & yogurt smoothie, 1/2 muffin or veggie omelet
• Lunches are one of the following: grilled cheese & apple slices, chicken quesadilla, lentils, pasta with ground turkey and sauteed veggies or mac n cheese
• Dinners (I really tried to use whatever the adults were eating) but there's a few unique to Liv: like Sweet Potato, Yukon Gold and Butternut Squash mashed with a little bit of heavy cream, butter and mixed with some cinnamon, brown sugar and nutmeg - I call it Thanksgiving in a Bowl

This way, it keeps our whole Olivia team on the same page as to what to feed her since she's getting sort of bored with the norms in her menu.  I can also say that she gets about 75% homemade food, and highlights that we really need to focus on getting more veggies in her.  My baby & toddler cookbook from Williams Sonoma actually has a few dip recipes that I may try to help her with self feeding and hopefully get her to take in some veggies along the way.  So that's that, depending on how week 1 goes, I may have to get more or less creative with Week 2.  All I know is the fridge is full of stuff begging to be cooked and the ice cube trays are jammed with food I made yesterday so it's going to be quite the week.  

30K and Growing

Olivia,
   Someday when you're older I want you to understand how much you matter to people and how they faithfully followed your journey and struggles early on.  This morning I just happened to see the stats of this blog and as we near your 18 month birthday - you've had 30,000 visitors check in on you.  I know some check weekly or daily (Nonna) and others just pop in from time to time to make sure all is well.  You know that you'll always be the center of your mommy and daddy's hearts but you are loved by so many my crazy sweet little girl.
Love Always,
Mommy

MIA Doctors and My Daughter the Foodie

I am striking out with the medical professionals this week and it's kind of annoying.  Now I will admit I'm one of the most impatient people ever to walk the earth but I just want to get in touch with someone that knows Liv's history at the peds and get things rolling there to see if we need to plan Synagis.  Then I want to hear back from our peeps at Hope to see what's shaking over there - to cath or not to cath is the question and in my mind that's a biggie seeing as how we're rolling into cold/flu season.  I really don't want to mess with a good thing that we've got going here if at all possible.

I did text back and forth with one of our nurse practitioners in the wee hours of the night last night - we're talking like two hours past my bedtime and 3+ hours for Olivia.  She said our primary cardiologist was out of town - news to me.  She would look to see if there were any notes on the chart from the echo last week - there better be if nothing else to say SEDATED ECHO FAILURE.  It's cool I'm not bitter.  I sent her a pic of Liv from last night's dinner at Chipotle and she couldn't get over how big and beautiful Olivia is; enter modest Mom, I agreed hands down.

In food news - we have successfully made our daughter a foodie.  While this is great and she eats all sorts of food under the sun, the diva wants a different breakfast, lunch and dinner all week long!!!  You start giving her a repeat and by Thursday or Friday she's just not digging mealtime.  I mean, seriously?  So now #1 priority on Mama's list for this weekend is to come up with at the very minimum a two week schedule of meals for my up and coming food critic.  Gone are the days where I could designate a Sunday to making at least a month's worth of four or five different meals for freezing.  Yes, I feel bad for myself on this one but I do love that Olivia's dinner last night from Chipotle consisted of: rice, black beans, a chicken quesadilla and then she washed it all down with 7oz of chocolate milk.  If you've got meal suggestions for the toddler age group - I'm all ears.

Early Intervention 1 Year Assessment

I cannot believe it's already been a year since Miss Liv was evaluated by Early Intervention just as she was coming off restrictions from the Glenn.  Not only has the year gone by, but it's like we were talking about a completely different child.  Back then she was almost six months old and really placing around a 3 month old with low muscle tone and numerous other delays because of all the restrictions on physical activity between the Norwood and Glenn recoveries.

Now, with the exception of speech, she's right where she needs to be.  The screeching that I might have mentioned once or twice (read:numerous) is being attributed to frustration that we aren't understanding what Olivia needs and wants.  Both the PT and Developmental Therapist think that at the very least we should have her evaluated for Speech just to see if there's maybe tips and tools that can be suggested to further Liv along.  While her grandparents are really looking forward to hearing everything on her mind, I'm quite certain that I can wait just a teensy bit longer on that particular area.  Even nicer, the care team thought it would be worthwhile to have both Grandmas meet with the Speech Therapist too since they have Olivia during the week while Brian and I are at work and in all fairness spend as much if not more time with her than we do (sad to say).

Still no word from cardiology, I am not expecting to hear anything until at least Thursday at the earliest and would actually take a timely contact from them as a bad sign that they feel things are more critical than the original explanation.

On another note - it's about flu season time.  My office is giving out free shots at the end of this month and I know the grandparents are on the ball as well.  I've got to get in touch with the Peds office to see when they want to start Synagis and I dread that whole experience once again.  We're going to take the same stance that we did last year with Olivia which is only having those adults around her that have had the flu shot and trying to avoid all school age kids entirely for the duration of flu season as an additional caution.

Tell me heart families - did your kiddos get the flu shot in addition to the Synagis shots?  Or did you forgo the one extra stick since they get a monthly booster?

And The Results...

Sedated Echo - Failure
Echo - Success
Echo Results - Mixed Bag

What exactly do I mean by failure of the sedated echo?  Well let me back up a sec.  Olivia is more than aware of what's going on when we walk into the Hope Echo Lab now, to the point that she actually walked over to my purse at one point, fished out my car keys and started walking for the door waving bye bye to the registration desk.  She didn't look back to see if Brian, Nonna or I were following her, she just wanted out and was happy to snag Mommy's ride to get her pass to freedom.

Okay - sedated echo failure; as in after 6 sticks by three different nurses each trying twice to get a peripheral IV going the next move was to take Olivia up to the PICU and do the oral sedation but she had to be in a bed on monitors with a crash cart near by.  No, we aren't crazy, we really let each nurse try twice because they were getting veins on every attempt but apparently Liv is extra special and has all these valves in her veins pretty near the surface of her skin.  Think of the valves as a fork in the road and they didn't have enough length on the needle of the IV to get around it to deliver the meds in her.  It was awful, heart-wrenching and took five adults (Brian and myself included) to restrain her.  The nurses were besides themselves and they were some of the best in the hospital - I will have to agree with that as this morning out of the six sites, only one has a little bruising.  Not bad for a kiddo that's on an aspirin regimen.

As we were calling up to the PICU for the transfer, Liv passed out.  I mean just OUT COLD, so one of the cardiologists on hand decided to try his hand at doing the echo and going for the money shots while we had a little bit of reprieve.  I asked him to specifically focus on her LPA which has historically been small and needed to be reviewed for growth and then he focused on the Aorta and Mitral valve because that's just standard practice.  Let's start with the not great news - the darn LPA is measuring 5mm versus the RPA which is looking closer to 10mm.  Aorta has a little narrowing but all within normal ranges and everything else looks great.  While not our primary cardiologist, the doctor did feel that the LPA is going to require a cath to balloon it or place a stent to permanently widen "the road".  We knew this was going to likely be the case with Olivia Pre-Fontan but I still didn't like hearing it even though it's what I built into everyone else's expectations.  The docs are going to get together next Wednesday, review findings and probably get us on the schedule within the next six weeks to go in and get 'er done.

On the plus side, the no sedation meant Liv wasn't foggy after the echo, could eat immediately and wasn't nauseated for the rest of the day.  Also good news from the echo was that they're probably going to push the Fontan back from her 2nd birthday even out a little further in the future.  Don't know when, I'm sure we'll get a better idea after the cath.  So that's it in a nutshell, I'll update more when I have more info from the staff once they have their meeting to review the data.  As for Olivia - she's doing really well actually, by the time she was on her stroller on the way out she was smiling and waving eating her Cheese-Its and drinking milk from her sippy.