"Fix You" by Coldplay

A heart mama that recently buried her little girl mentioned how they played this song at their baby's wake and how relevant her and her family found the song.  I either hadn't heard the song before now or didn't really listen closely to the words on the radio.  This morning I finally listened to it and wanted to curl up in a ball and cry.  I can see how the words bring solace to the families of lost loved ones by talking of their loved ones watching over their broken and bereaved families.  The angel wanting to bring them comfort and "fix them" - helping them move through their day to day and carry on living.

Each week brings more babies and children passing on.  Sometimes they never made it out of the hospital after birth and sometimes completely suddenly and without warning while in the midst of living and making memories with their families.  The ones that hit me hardest are the ones around Olivia's age, but I've also found that kiddos that were past the Fontan living a really full life either with a transplant or Fontan circulation are giving me more angst than they used to.  There's never going to be an out of the woods or a "phew we made it and now we're on the other side of the battle".  

In the last two weeks Olivia's personality has been a bit of a bear by the time we get home from work.  Literally most of the hours we're spending with her Monday through Friday are tantrums and early bedtimes and I feel cheated.  I feel like we're coming home burnt out from stress and exhaustion of being at work all day only to be cheated out of fun times with the Livster because it's just moving up from one meltdown to another.  I know that all of the parents that have lost their little ones would take a crummy cranky lifetime with their babes over no days at all, I know that when I sit in quiet and reflect.  In the moment though, it's tough to sit there and let her continue to scream and cry from over exhaustion.  So my little wish is these teeth come in and "No Nap Olivia" goes on a little vacation and Miss Olivia comes back to play and enjoy the few hours she has with her parents every night.  I love that little girl to bits and pieces and never want to take a moment with her for granted

Independent Girl

While there's still only a few words that Miss Liv makes out for us like "MomMom, Bob, and yah" She definitely has a way of getting her point across anyway.  She sticks her little index finger out and points at exactly what she wants.  If you are somehow foolish (tongue in cheek) not to understand which particular item out of the 20 in the general vicinity of that little finger - she will grunt at you until you get exactly what she wants.  Last night's need was a banana on the kitchen counter, she was beside herself during dinner at the thought of being in her highchair and just overly exhausted from a single nap day with Nonna.  But then once she realized she wasn't going to get sprung she decided to point for the banana and I make sure to tell her the word as I was giving it to her in hopes of one day it'll click and she'll just ask for it by name.  In the meantime it did the trick because 2/3 of a banana later, happy giggly Miss Olivia ate her chicken and black bean chili as well as some steamed carrots and peas.

She is playing better on her own these days, of course still liking to make sure that she has someone paying attention to her playing by herself - but she doesn't need to be played with to keep busy.  While I was getting ready one day over the weekend she came into the bathroom with me and flipped through a magazine telling herself a story full of "ohs and yeah yeah yeahs".  Speaking of her story telling - she's much more verbal than she was say 3-4 months ago and it shows when we go to restaurants.  She's got something to say the entire time, unfortunately she doesn't come with volume control so that's the latest battle; trying to keep her entertained and relatively quiet so as not to ruin the experience for everyone else.

Sleeping has been going great and even though she flirted with the single nap a day for a few weeks, the latest round of teeth is kicking her tushy and she's gone back to two naps most days.  She is measuring on or around 31" long and probably stalled out around 25 lbs given that she's putting most of that weight into lengthening out.  The walking thing is still sort of a battle, she can take steps and she's pretty stable but in true Olivia fashion, she'll get to it when she decides it's a priority - which right now clearly it's not.  That's my girl, she does everything when and how she wants it done; much to my dismay.  Yes, I realize this is slightly hypocritical given that's how I roll, but ugh, the exhaustion from battles that I know we're going to fight in the future already make me want to go to bed and hide under the covers for what's to come.

Heart update?  Nothing to speak of, still on 1/2 a baby aspirin a day and .5ml of Enalapril 2x per day.  The pulse ox is collecting dust in one of her drawers and I intend to leave it there unless we're really desperate to get a read on an off day.  Most days I only think of her special heart at night changing her into pjs and looking at her sweet little chest railroaded with scars.  Thankfully most other moments of the day are filled with exasperation over my super headstrong almost 15 month old and just general joy that a parent gets from watching that beautiful face break into the best smile and listening to that big belly laugh she gives.  How amazing

Keeping Us on Our Toes

That's Olivia for you - she likes to make sure that not only are you paying attention to her, but that you're ready to jump in and save her from whatever danger she likes to find.

Saturday's adventure was somehow gagging herself on our way to breakfast.  I'm still not sure if she found a stray cheerio somewhere in the depths and darkness of the car seat folds (ew) and popped it in her mouth or if she was gnawing on her own hand to ease the pain of teething and just triggered the heaving reaction.  Either way, as I'm going down the busiest road in our area I hear this gagging sound to find her really struggling to clear her airway.  I immediately pulled over into a turn lane and threw on the hazards to see what the little lady had gotten herself into.  Crisis averted, we continued on our journey to Cracker Barrel for breakfast where she preceded on eating an entire order of hashbrown casserole all on her own.  Just for good measure in the event that we decided not to feed her on Sunday she also took down the majority of a grilled cheese and a healthy helping of mashed potatoes at Nonna's birthday dinner on Saturday night.  I never imagined ordering off the children's menu for my 14 month old, but I was getting to the point where I don't get to eat enough at meals because it's all going in the little birdie's mouth.  (Yes, that in itself could be considered a diet, but I'd like to at least enjoy some of what I order!)

Ooops - I failed to mention in the above that she did start taking a few steps on Saturday either walking from me to Brian or vice versa but only for a few steps and never making the return trip to the other.  She will just slowly sit herself down and give you a look like "I'm done now -thankyouverymuch".  No amount of coaxing or waving her favorite toys around will get her back on her feet when she sets her mind that it's just not going to happen again.  Whatever - we knew she was steady enough and she can do it, it's just when she WANTS to do it.

Sunday's adventure was a bit scarier.  We were eating dinner and Olivia decided she wanted what we were eating so I gave her a little portion of the sauteed spinach that I made and some rotisserie chicken that was store bought.  It was fresh spinach cooked in olive oil and mixed with fresh garlic and red pepper flakes with a little lemon juice over it while it was still warm. Deeelish and she thought so too.  But then as I was clearing a few plates Brian called me over to look at her face and she started getting hives all around her lips that were almost like blisters.  Worse - she was sort of slumped over in the highchair with a glazed look and completely silent which is definitely not the norm these days.  I pulled her out of the highchair and hightailed it to the sink trying to rouse some noise out of her and nothing.  Then we sat there and scrubbed her hands and face with the faucet running much to her delight.  Immediately there were giggles about the running water and she was mad when I took her away to dry her off.  The redness started to dissipate almost instantly but I still held her in my arms and offered her a bottle to see how she was feeling overall.  6oz and a few burps later she was on the go once again.  I can only assume that the red pepper flakes that were in the spinach irritated her delicate skin; as it wasn't the first time she'd had the meal - BUT was the first time she fed it to herself and it was less than dainty.

Pretty sure those few little stories are just the tip of the iceburg of what's still in store however I do feel my life expectancy getting a little shorter after a near miss like those above.

Happy Birthday Nonna!

Happy Birthday to my Mom!

Sure her big day was a little less than ideal suffering from a small cold, or the monsoons that hit our area or maybe that she spent part of her birthday at the doctor for a physical (she claims her daughter and grandaughter don't give here enough time off-just kidding). Either way I know that she will show up bright and early tomorrow ready to rock with Liv because she's so reliable that way. In the past 18 monthish she has been to more doctors appointments with me than probably all of her life before then, visited the hospital daily to see Liv and I and been as supportive as I could have ever asked or expected.

She's like the Energizer bunny when she sees disorganization; I believe it physically pains her to see my clothes untidy or strewn about my bedroom. When Olivia is occupying herself or down for a nap Mom tidies up wherever she can bring order-many times leaving the house better than it was when I last saw it. All of her efforts just allow Brian and I to spend more hands on time with Olivia after work which is such a gift in itself.

As my sister and I have grown our mom has sort of assumed the role of personal cheerleader-sometimes to an embarassing extent! Oh and dont get her started on Precious (aka Olivia)-I'm quite certain that she enjoys being grandmother more than she enjoyed her own daughters at the same age...can't say I blame here all of the cuteness and she still gets full nights of sleep. Despite the occasional reminder needing to be given that I am fully capable of multi-tasking and taking care of baby, stroller, and diaper bag on excursions I couldn't be more blessed to have my mom in my life.
I love you...Happy Birthday!

Smart Little Cookie & Teeth Update

The best way to describe Olivia in terms of learning is that she's like a sponge.  She sits there and observes and soaks up as much as she possibly can before moving on to something else.  When she's playing with her toys I'm quite convinced that she's coming up with ways to take them apart and put them back together a la mad scientist.  We already knew that she knows what she can get away with and with whom, but yesterday's story from Nonna cracked me up.  Miss Olivia was down for her daily nap and eventually she was stirring so my mom went up to get her and found her standing in her crib waiting for Nonna.

My mom asked Olivia for her pacifier trying my technique of "Olivia you're a big girl, you don't need a pacifier" and normally this works and she'll hand it over.  Yesterdayyyyy - wouldn't you know the little stinker had dug up another pacifier that she hid somewhere in her crib the weekend we were flying solo and when Nonna asked for the pacifier, Liv just pointed down to the crib where there was a pacifier laying there like "There you go Gram - you want a pacifier, there's one for you" all the while keeping her original napping pacifier in her mouth.  My mom tried asking again just thinking maybe it was a fluke and nope, same little finger pointing to the other pacifier laying in the crib.  Hilarious!

As for the pacifier, she's really too not attached to it (we only use it for sleep), once she's up from her nap or waking up for the first time in the morning, if she doesn't hand it over upon request I just pull it right out of her mouth and she doesn't fuss about it.  Current goal to go without it is around 18 months, I definitely don't want her to be dependent on it nor do I want it to do any damage to the way her teeth grow in.  Speaking of teeth she has gotten much better about letting her teeth be brushed and actually enjoys it now that we use a safe fluoride-free toothpaste - in fact she will actually crawl to the bathroom where we keep her toothbrush and toothpaste looking for it and to have those little chompers cleaned.

As a cardiac patient good oral hygiene is a really important practice to hopefully lower the risk of any bacteria getting into the bloodstream and potentially increasing the risk of stroke or bacterial endocarditis (infection of the heart tissue).  Most if not all dentists will recommend a preventative dose of antibiotics prior to any normal cleaning and definitely before any extensive work is done on the mouth of a patient with an increased risk of complications from bacteria of the mouth getting into the blood and traveling elsewhere in the body.  Olivia's current teeth count is up to 8 with a few more looking to break through any day.  Sigh...I feel an temporary end coming to the peaceful nights we have been enjoying as of late.

Thank you!

This weekend a family wedding gave us the opportunity to introduce Olivia to many extended family members and out of town friends that she'd never met before.  Just because she hadn't met them didn't mean that they didn't know all about her.  So many people recalled their most favorite blog entries, others knew all sorts of her little bio facts and everyone was able to see firsthand just so well our girl is doing right now.  We clearly felt the love and support that you have been virtually wishing us dating back to Olivia's diagnosis in utero and I just wanted to again voice my appreciation for all of the well wishes.  I do apologize for "No Nap Olivia" I had really hoped that we could get Little Miss Missy out to smile and bat her beautiful eyes at all her faithful and loyal admirer - but no dice there.

Here's some FAQ's just to give the highlight or overview of our current status:
Q: What's the timeline for Olivia's next surgery?
A: We were told early on that she was on target around age 2 - we have another cardiology appointment in July that will be complete with an echo and that might require an additional heart cath so we should have a more definitive game plan after that

Q: How many meds is Olivia currently on?
A: She's on .5ml of Enalapril (BP medication) right now along with half a baby aspirin daily and then two vitamins

Q: Are the doctors just thrilled with her progress?
A: Yes, they are very pleased with how she's doing.  Mommy is so pleased and appreciative but always looking for a physiological explanation for Olivia's current success - any and all information in the way of these HLHS babies would be helpful to help future cases

Q: What sort of extra care does Olivia require?
A: Not much at this point (knock on wood) - we like to avoid anyone that may be sick or in contact with anyone who's currently sick to keep germs to a minimum, now during the summer she will require a little extra attention when we're outdoors to make sure she doesn't overheat, and as is our norm watching for any signs of cardiac distress

Q: Last but certainly not least - What's Olivia's long term prognosis?
A: That is a really hard question and we don't have an answer for it.  Our life could take a dramatic turn after the Fontan - short term or long term. She has done so well through the first two surgeries that you'd like to think we'd expect the same this next go around but that's just not the way things work.  The last surgery deals with the blood flow to the lower half of the body and there are complications and life altering changes that could potentially be a result from the new circulation.  Even past the Fontan; Olivia will always have half a heart and that's just not the norm nor are there decades worth of history to help educate the doctors treating these patients.  They're still writing the user manual so to speak.  So all we can do is hope for the best and live each day that we have to the fullest.

Thank you all again!
Much Love,
Lisa