13 Months Old!

Olivia!
  Another month has gone by - aye dios mio!  You even make a face and put your hand to your head like you're exasperated sometimes.  It's hysterical, you have such a personality. 

Eating:  We haven't found much that you don't like except for broccoli.  Some of your fave big girl meals that Mommy made you are: Black Bean and Chicken Chili, Mac N Cheese, Pasta with Meat Sauce, Lentils with Stewed Veggies, Mashed Potatoes and Zucchini. You will take a pureed food here and there, but you are just "So over them".  You're almost on all whole milk now, once this last formula tub is gone that's all she wrote girlfriend; even getting a little better at the cold milk temp though you still prefer it warmed. You would be quite the piggy at the popcorn bowl if I would let you.  The other night I was breaking off little pieces of the popcorn to give you without the husk and you felt I wasn't going fast enough so you dove into the bowl to help yourself.  Suprisingly you didn't struggle at all with it - but let's not make that a habit okay?  Plus it's sort of rude to dive into someone elses food...

Playing:  You will play by yourself every morning with either Grandma and for Mommy when she gets home from work, but when your dad gets home, you expect his undivided attention.  You've got a whole little Fisher Price garage for your vehicles - Dino, Baby Stroller and Cool Purple Car.  Now you're going over to them by yourself to take them for a spin and make sure that you press all the musical buttons on there as much as humanly possible.  Not that we're watching much TV these days anyway, but TV with you is more like seeing and trying to read lips since just about everything you own is a battery powered noisemaker

Talking: Still going with MomMom and Bob for your parents or just about anything else.  I've heard a few "Hi's and Ball" in there, but I don't necessarily you mean anything in particular, you just like making noise.  Most recently you've discovered how to make a clicking sound with your tongue and it constantly sounds like you're calling a horse around the house. 

Sleeping: Olivia Giuliana, as much as you've excelled everywhere else, this is where we could use some serious improvement Little Missy.  You're great when it's Mommy's nights but are manipulating the bejeebies out of your dad.  He thought he'd be clever and swap nights with me to see if that makes a difference and so far night 1 was a disaster.  I came in to find you standing in your crib screaming like your mattress was on fire and then around 3:30 heard you babbling only to find you sitting up sort of playing.  This is not going to fly for the long run little lady.  Just know you can party till hours of the night, but come 7:30am one of the Grandmas is still going to wake up your little tushy to get the day started.  Now, if come tonight you have figured out that your parents tried to scam you and you figure that out in one night; not only would I be super impressed but I'd also be a little fearful that by age 2 you're going to completely outsmart all the adults in your life. 

You continue to be the constant sunshine in many of our lives and we love you dearly. 
Besitos y brassos
Mommy

My New Appreciation for Easter

We've never been big on Easter as a family from the religious aspect but last year it took on a whole new meaning as it was the first and only holiday Olivia spent in the hospital.  Last year she was less than a week Post-Norwood and it marked the first time in our hospital stay that I left the campus to do brunch.  Even though the restaurant that we chose was about 2 miles away from the hospital and I knew that the staff at the PSHU had cell phones and emergency #'s up the wazooo I was still antsy to get back to her bedside.  How fortunate are we as a family that even with all the procedures and appointments, we have not spent more than one holiday in the hospital thus far.  So now, when I think of Easter I think of our time in the PSHU and the families that donated the beanie babies that every little one got last year during their stay.  In Olivia's case a pink bunny that stays in her crib as a little protector. 

This past weekend was even more monumental besides the holiday.  Saturday marked one complete year since Olivia came home from the Norwood.  We have been so caught up in the day to day life with a busy (read: wild) one year old that the day actually got past us.  I thought it was today remembering that last year she turned a month old at home; but forgetting that we came home one day shy of four weeks old - if that makes sense.  So...one year at home has come and gone and she marked it in true Olivia fashion with skipping her afternoon nap, staying up until 11PM and then waking up four times in the middle of the night.  We're all pretty convinced that she knows that Mom and Dad alternate nights of taking care of her and while she's been giving me a solid 6 hour stretch for a while, she will routinely wake up on Brian's nights.  Sometimes it's just for a pacifier, the occasional middle of the night bottle and he swears that she wants a hug - that she will be sitting up in her crib waiting for him to give her a little squeeze and then go back to sleep.  Either way - Olivia's Daddy is at her beckon call and worse, she knows it!

This week I'll get a bunch of pics up from her first birthday, I know I've been late getting those posted and we also have her first year pic with Fievel in keeping with the tradition. 

I know you're reading, but do you get it?

Good morning to all our readers out there...
    I was thinking of the numbers, facts, statistics regarding CHD's (do you remember what that stands for) and wondered how many people have actually changed their thinking regarding infant screenings after birth, or made sure to become an organ donor, or as expectant parents keep in mind that 1 in 100 babies has a CHD. 

   I say these things because I know how many friends and family and extended network follow Olivia's blog (I get to see the statistics - thank you Blogger), but has it changed anyone's thinking?  Have you had an immediate family member or close friend recently give birth and suggest to them that their newborn should be hooked up to a pulse oximeter for a few minutes just to make sure the oxygen saturation levels are where they should be just to rule out any number of heart defects? 

   If you're a pop or beer drinker out of a can, do you now save the tabs off of each can to donate to the Ronald McDonald house because you now know that those little tabs actually go towards paying for the houses? 

   Have you made the choice to become an organ donor?  One healthy person's organs can save EIGHT other lives, not to mention positively impacting so many others that get tissue, skin, etc. 
  
   I know I'm being sort of preachy today but I can readily admit that aside from the organ donor, I only learned of the newborn screening and pop tabs after becoming pregnant with Olivia.  But I've learned and adapted...how about you?
Enjoy the beautiful spring day!

Cardiology Update

Good morning and Happy Monday (blech)!
   Most importantly, let me just say that the cardiology appointment from Friday was only full of good news.  Some of you can and probably will stop reading there, but here's the nitty gritty.  When we got there, our fave nurse wasn't in which normally spells trouble with Livvy.  She likes routine and familiar faces but this new nurse let me put on the BP cuff and our first reading was a little high but pulse was good.  We didn't have to do height or weight because of the recent one year ped's appointment so we just used those numbers on her chart.  Pulse ox was a breeze, Liv managed to sat anywhere from 94-87 which is much better than I expected.  The nurse practioner came in to do her assessment and ask us questions to which we voiced all our concerns about her cyanosis (blueness) going on and said we were looking forward to the echo. 

Now here's where it gets weird...our Cardiologist always always always wants echos on these kiddos every 3 months if that's the schedule that they're on.  But on Friday, there was no note anywhere for the echo.  Since Brian and I requested it, they decided to go ahead anyway because we wanted to rule out a problem with the LPA or any collaterals that could have formed that might have been contributing to the change in color we've been seeing.  The tech came in to get started and Olivia lost her marbles, no bottle, no setup where Mommy or Daddy were holding her, no IPad or Ipod was suitable distraction.  She was beyond hysterical so the tech quickly bailed and she calmed down for a minute or two.  I gave her one of the probes off the echo machine to play with and that calmed her so then I took another probe and decided to try running it over her chest and again - H-Y-S-T-E-R-I-C-A-L.  They were calling her T-Rex because her roar could be heard through the waiting room and every exam in the clinic.  She was a hot sweaty mess and so were we from just trying to calm her.  After 50 minutes of this continuous roar, we all threw in the towel.  Our card said he didn't need an echo anyway since the last one was so beautiful and the additional rationale was if she could sustain that kind of fight for so long against the echo without seeing any cyanosis then there wasn't anything amiss.  I sort of had a "gee...thanks" moment for that one.  

So we didn't necessarily get the peace of mind we were looking for, but we did get a better understanding of what sort of blueness is normal and what signs to watch for when it may be abnormal.  It's all the same type of stuff from the interphase period between Norwood and Glenn.  Decreased appetite, abnormal fatigue, trouble breathing, GI issues, they are all signs of cardiac distress and we just need to watch for any drastic changes in Liv's day to day.  Otherwise, we can expect to see her a little blue when she wakes up from sleep and naps because of her resting heart rate during sleep but so long as she pinks up relatively quickly after she's up and moving there's nothing to worry about.  The PT/OT assessment was very favorable and they asked us to get some toys at home that would actually be more challenging for her to help continue with her progression. 

As for that darn echo, she's not getting out of it next time.  In three months time, whether she is ready or not, it's going to happen.  Our choice at that point may be to do it sedated which isn't desirable but necessary when you have a ravenous animal on your hands kicking, screaming and clawing for the nearest exit.  I do expect that by then she will probably be walking and for a 22lb baby/toddler, she's already a force to be reckoned with so I can only imagine what it will be like next time.  Yeeesh...can the Mama's get a little cocktail too when their kiddos have to go in for screening?

Peds 1 Year Check Up

This past Thursday Miss Olivia had her one year well baby checkup at the pediatrician.  The concept of a well baby visit still sort of amazes me given that it's been another three months since we were last seen by cardiology.  With the exception of the enalapril that we're still giving her 2x daily; life is so normal.  So here are the stats from the appointment: Olivia weighed in at 21lbs 11oz putting her in the 55th percentile - this was lower than she would have been I think had she not been teething the entire week prior to her birthday.  Eating that week was a struggle and she was running a low grade fever for a few days.  She is 31" long - which is around the 75th percentile and that pretty little *ahem* dome of hers, it was 19" circumference which is almost off the charts.  Happily, she's growing into what I lovely call her "Helmet Head" definitely getting more proporitional by the day - instead of looking like the cutest bobblehead you've ever seen.  Yes, I know she'll be vexed as a teenager when she reads the way I've talked about her head to body ratio. 

The two big questions I had for this appointment were - could we move her to cow's milk, answer: Yes - moving her to whole milk for her entire second year.  When would it be appropriate to start using a soft bristled toothbrush to start gently cleaning her teeth and gums?  Answer: 15 months - so after our next checkup we should be able to start brushing her little chompers away.  Literally in the past month she went from two to six teeth and I think more are coming through.  Poor little missy, hopefully they don't come in packs of four again.  That was brutal for her. 

The not so fun part of the appointment?  Four shots - two for each little drumstick.  She didn't have as much of an adverse reaction to these as she has had in the past, but I will say that it did impact her sleep schedule.  She's been going to bed on average over an hour later and waking up over an hour earlier than usual since she was given the shots.  Her personality has also shifted in the last week or so and not in all pleasant aspects.  She's happy go lucky, Miss Sunshine or she's angry stiff as a board baby screeching at the top of her lungs and there's very little middle ground.  The stiff as a board thing is almost comical if I could step away and watch someone else deal with their child doing the same.  She gets rigid when she's upset about something i.e. diaper change or bedtime before "she thinks she's ready" and she makes it almost impossible to move her.  If you try to sit her on the floor she'll go all limp noodle and sort of become a puddle of baby.  Last night she pulled many of these shenanigans on me while I was solo and she was a hot sweaty mess and so was I trying to reasonably comfort her before putting her to bed. 

On Friday we do have our three month checkup with cardiology; I'm interested to see how things are looking under the hood with the echo.  In my opinion, I think her fingertips and toes have been duskier than they have been in the past and the bottoms of her feet seem to have slower capillary response than we have been seeing.  I don't know if this is an indication that we will ultimately have to have a cath to balloon the LPA (left pulmonary artery) or if it's just part of the seasonal temperature in the house but I'm going in expecting to be told it's time to get a cath on the schedule for a little bit of intervention.  If not, then great, but for now that's the realist perspective - so if you're reading this, please do try to prepare yourselves as well.