Jealous Much?

Olivia met her newest cousin Jacob yesterday who's currently weighing in around 6lbs and change at 3 weeks old.  Originally I was holding the little guy - who seriously doesn't weigh more than a kitten at the moment and Olivia managed to squirm out of her Nonno's (my dad) lap and walk - yes WALK over to me.  She then planted herself right in front of me basically locked in a stare with me as if to say "Ummm hello Mommy, I am your baby, please put that thing down and pick me up".  Yes, she said all that with her little glare of attitude.  When I didn't heed it, she basically tried to push Jacob out of my arms.  Sitting her on one leg while I held him with my opposite arm did little to appease her, she still didn't like that little guy in her Mommy's arms.  My takeaway- I MATTER to Olivia!  Seriously, I am used to being the bottom of her fave people list simply because I am the disciplinarian and the path of most resistance for her Imperial Majesty so she tends to gravitate to the softies because she's a Class A Manipulator at her ripe old age of almost 16 months.  So while it was a little disconcerting to see how she's reacting to other little peeps, I did feel some serious Livvy love.

Today - I am however green with envy of my mom.  I'm now in Tulsa, OK and while I was getting ready to leave the office I got a text from Nonna telling me that Olivia ventured from the kitchen into the family room all by herself - her longest solo trip yet.  Yes, I was there for her first steps, but she's getting more courageous every day and by the time I get home Thursday afternoon I'm sure she'll be ready to do a 5k (I'm only mildly kidding here).  She doesn't do anything halfway, last night even learning to climb up on the couch at the motivation of getting some of my amazing chocolate milk.  So, with my overwhelming mommy guilt, I'm hanging out here telling anyone who will listen about the feats that my girl is accomplishing while I'm away and sucking up the downsides to being a full time working mom.  About the only comfort I have is that it was my mom who got to experience the moment and if it couldn't be me, she's the person I prefer to get that moment of joy next seeing as how she spends more time with Olivia than anyone else.  Even more than her own parents since we only get a few hours with her at night before bed.  So yay for Nonna, boo for Mommy (oh yes, and Daddy too).

Who knows, she'll probably be reading by Thursday.  I'm off to drown my sorrows in potentially some online retail therapy :)

In All Directions

As heart families we connect over the internet, normally through our blogs, sometimes on Facebook, and occasionally in person if the family happens to have the same medical team as you do.  So technically, many of us have never actually met, we don't know the ins and outs of one another's lives or who's best friends with whom and so forth.  But we do know things about each other better than some or most of our family members, we hear the words PICU, Norwood, TOF, CHD and we know that we're related whether by blood or not.  As families of the heart community, we share our own language and celebrate our victories and really weather our losses.

This morning I feel like a little bit of me is in multiple places of the country.  In Boston Brooklyn is struggling after some complications during her Glenn and I've been following her blog over the last couple of days trying to stay up to date with her progress and now fight for life.

Here at home we have a little buddy struggling after his Fontan.  His story one of the very first ones that I read while I was still pregnant with Liv - even a little famous since he was featured in the hospital newsletter at just a few weeks old rocking an "Ilbawi Alumni" onesie.  Now I'm checking his mom's Facebook wall to get status updates hoping that his kidneys will perk back up and he'll be able to diurese (pee) on his own.

Last night Liv had a bad dream of some sort and woke up just as I was getting into bed and normally I would have huffed and puffed about trying to get a few hours of sleep before heading into work but we sat in the glider together and she tried relax and I loved it.  Sure, it was about 90 degrees outside and AC can only do so much with a heavy sleepy little girl on your shoulder, but I'd rather be sleep deprived any day of the week than the alternative. Olivia's fellow heart warriors Travis, Wyatt and Charli are sort of the three musketeers now that give me a gut check about life from time to time.  I think whenever I'm losing perspective one of those three little angels pulls a shenanigan to remind me again of what's really important.

Step by Step

Olivia's officially on the move!  We knew she could do it and every day her confidence has been getting increased and she's been getting bolder.  Last week it was playing peek-a-boo around furniture and without realizing it was happening, she was letting go of furniture to clap for herself with excitement.  Once she realized it was "Look no hands", she'd cautiously seat herself on terra firma.  This past weekend Liv started letting go of anyone that she was holding on to start walking towards someone else or something else that she really wanted.

During PT yesterday she was playing at her little table set with a puzzle often just standing there and waving puzzle pieces through the air without leaning on the table or having a hand to steady herself.  She's much steadier than I would have expected, but then I reminded myself she's really been standing for months now so she had all opportunities to work out all her nerves.

The change in scenery by moving all her toys to the unused living room was one of the best decisions ever.  It's a formal playroom now with her little table and chairs, mini rocker and her armchair.  Heck, she's got seating for four if she decides to entertain guests, they just need to be under 4' tall and under 50 lbs to ensure that the weight capacity of the furniture holds up.  We did discover when we tried to liven the place up with some pictures that they cannot be pictures of just Olivia.  She gets upset when she sees a picture of herself and can't get her little hands on it - so instead we've got one of Dr. Ilbawi holding her and it's like she knows that he symbolizes the hospital and intervention because she has absolutely no interest in holding that pic!  Oh well, someday I hope that she'll be happy to have a few pics with him throughout the course of her life since he essentially gave her the gift of life.

So that's it, Olivia's keeping us all enthralled with seeing what each day will bring and how quickly she can destroy a room before she moves on to the next one.

Sedated Echo Anyone?

As per my last post, Hope's pediatric program does all sedated echoes on the first Wednesday of every month so that they have proper medical staff on standby for any and all kiddo's that need the sedation because their dinosaur side comes out during routine appointments.  First Wednesday of every month, all right, well that's August 3rd - errrr, apparently that only applies when Olivia doesn't need an echo.  In our case, no such luck for the 3rd as they proper staff will not be on hand and while they were great to give us a heads up to call and cancel, they have not been great about calling back to let us know when they WILL be available.

So again, wait, wait, wait.  I'll say this much, I'm so much more patient than I was before Olivia ever came along and most people who know me well still know that my impatience bubbles over most days.  The cooler weather last night was so amazing: beautiful, sunny, no humidity and about 75 degrees.  On the other hand, Livvy became blueberrylicious very quickly sitting out in the shade while we made small talk with the neighbors.  That should make for an interesting fall for sure.  Looks like fall 2011 may be the season of violets and blues with Miss Smurfette.

The Card Appointment that Wasn't

Sorry for the lack of update from Friday's appointment, there just wasn't really anything to share.  I mean that in the sense of actual information provided from the appointment.  See - we were under the impression that all the medical staff knew and understood that we were going to sedate the little T-Rex for this upcoming appointment so we got some really pretty pictures during the echo without a fight.  A sign of how things were going to go down?  Olivia started to lose her grip just walking into the waiting room.  Her BP was off the charts because she was so hysterical and her pulse ox was over 10 points lower than it had been just a few days prior when we did an at home spot check.

Echo?  Yeah...lemme tell you about that.  They tried to start it sans sedation.  Why you ask?  Well apparently this was a case where the left hand didn't know what the right hand was doing and it wasn't charted that she really needed sedation.  And as our luck would have it sedation at Hope is a big deal, like as in the first Wednesday of every month and complete with an entire medical staff to monitor vitals for the sedation that's equivalent to pre-op.  Joy of joys, so after watching Olivia thrash and scream for what was literally the longest two and a half hours of my life, we left with the encouragement from the team of "at least you know if there was something wrong, she never would have had the energy to go on like she has been doing".  Oh gee thank you very much - can I just tell everyone where to shove it right now?

I would seriously take labor without an epidural any day of the week compared to watching her on Friday just to set some perspective.  The whole experience was totally traumatic from me even though the second we walked out of the waiting room, Little Miss Thing piped down and put on her best victory smile.  I have never dreaded the Fontan as much as I did on Friday.  To think of her growing bigger and stronger and all the more terrified of the staff as we go just made me so sad to envision her terrified and thrashing around in a bed post-op the next go around.

As a fellow heart mom friend and I discussed.  You love your unborn baby, you're scared and nervous when you hand them over for surgery, you shed tears at their bedside watching them on the ventilator with their eyes swollen shut at mere days old; but every day that passes, you form a greater bond with them. They're not just your baby, they're woven into every thread and fiber of your life as time passes.  The fact that I'm struggling with the thought of what's yet to come doesn't even do justice to the other fears and darkness lurking out there if something were to go wrong.

Back to Cardiology - August 3rd is the day.  Miss Liv will be an unhappy camper without food (her BFF) and drink restriction for the meds and then I will be escorting her down to Hope in what should be the best freakin pictures we ever get of that beautiful little ticker she's got in there.  Here's hoping right?

15 Month Check Up with the Ped

I can only hope that next week's cardiology appointment brings as much good news as yesterday's pediatrician appointment did.

Liv's stats:

• 32" Long
• 23lbs 12oz
• Head growth has tapered off slightly and is now only in the 90th percentile - sorry Tia Linda you may not see Liv as Miss Potato Head
• Oh yes - Olivia screamed and howled from the minute the nurse took her temp until we left the entire pediatric office (approximately a half an hour)...next time I'm bringing ear plugs

The doctor felt she's growing well enough that we should really move her down to 2% milk by next month and even try to cut back a few ounces per day once we do that to see if her intake of solids increases.  I don't know how that would even be possible that she eat more solids than she is right now, but we'll give it a try and see how it goes.  We have had mild sippy cup success in the last few days - right now the winners are the model with the straw built into the cup.  It seems like it takes a lot of effort to get anything out, but she likes it so that's all that matters.  

Other than that and a couple of new pictures stay tuned from pics of the Fourth and an update next week from the cardiology appointment.