Carters Sale!!!

Just a quick update...anyone interested today is the last day of a Friends and Family sale from Carters either online or in the store.  Here's the link Carter's 25% Off.  I just ran there on lunch and it was F-A-N-T-A-S-T-I-C.  They let you combine the offer with their sale pricies within the store and it was a great deal.  If you can't tell, I'm very pleased with my bargains for today.  Olivia will be too when she seels all the loot.  Who am I kidding, she's way happier in a onesie than a stuffy little dress regardless of how cute I think she looks.

A look at the past 6 months...

Then:
Olivia was born at 3:17PM on March 27th weighing in at 8lbs 5oz.  We were able to see her for a minute before the NICU team took her off to get assessed.  By the time I saw her the next morning she was already intubated and sedated.  On March 30th we went down to the NICU to give her kisses before the surgical team wheeled her off for the Norwood.  April 23rd we packed up all of the stuff that we had accumulated at the Ronald McDonald House and took our baby girl home for the first time.  June 25th we took a day trip out to Hope for Olivia's first cath procedure and determine readiness for the Glenn.  August 5th, the three of us made a trip back to Hope for the Glenn.  August 9th we were discharged and went home to really enjoy the day to day. 

Now:
Olivia's learning something new every day, recently it's been finding her voice.  She really loves loves looking at her left hand like she got the best manicure that money can buy.  We have been able to put her successfully on her tummy for more than a minute without her getting scared and she's even trying to pull her legs underneath her.  We've been giving solid foods for about three weeks now and she's had sweet potatoes, squash, apples, bananas and oatmeal.  The biggest difference between now and prior to the Glenn is we're living in the day to day rather than by what procedure is coming next.  She tends to sat anywhere from 85-95 depending on her mood and at our last weight check on the home scale we figure she's nearing 16lbs.  Today we are in a place that we could only dream of a few short months ago.  Our not so little girl is celebrating her six month birthday.  It is definitely a cause for celebration as she's fought really hard to get here.  As you can see in the pic below, she's got plans for her future!

Happy 6 Month Birthday Olivia - you bring Mommy and Daddy endless joy

I wonder...

Costco was doing their due dilligence yesterday and let us know that we purchased a batch of the Similac formula that is on their recall list.  As some of you may or may not know Similac is doing a voluntary recall on their Similac Advanced and a few other versions of formula that were found to contain Beetle larvae and parts in the powder.  Can I just say Ew!?!?  Worse still, side effects of these bug parts/eggs being in the powder can create gastrointestinal issues for babies ingesting the formula.  Wonderfullllll

So now last night and this morning I am left wondering if maybe some of the bleeding and fussiness that we saw pre-Glenn could have had to do with this recall that whole time.  Once we gave Olivia straight breast milk, things definitely got better.  I guess we'll never really know, but just another reason to make you second guess everything that you feed or buy in the aspect of toys. 

Traditions

Since Brian and I have known each other going on fourteen years now, we've sort of established our own set of traditions in that time.  One of those traditions is Brian creating me a CD for my birthday and other special occasions throughout the year.  I have at least 10-12 CDs (now Ipod playlists) from our years together as buds, newly engaged couple, husband & wife, prospective parents and now parents.  Each playlist is a snapshot representative of where we were in life when he made them for me.  I won't delve into much of the CD that he included Air Supply's "I'm All Out of Love"....I'm getting the point I promise.

Anyway my latest CD has a song by George Strait called "The Breath You Take" and if you go on to a country station right now, you should be able to catch it.  My favorite part of the song is below as it speaks volumes to where we are in life as a family.

"Life's not about the breaths you take, but the moments that take your breath away"

We are so looking forward to sharing these CDs and more traditions with Olivia as she grows older.  We'll definitely be celebrating her 6 month birthday with cake and even a candle next week.

If She Cries, We Will Come

Oh yes ladies and gentlemen, Olivia has us figured out now.  If she cries, she knows that we're going to come relatively quickly.  This is especially true in the middle of the night.  She has been up every few hours for the last five or six days and I'm pretty sure a few times she didn't really need anything other than to see one of us and get some reassurance that yes we're still around and listening for her. 

A diaper change here, a bottle there and back down she goes.  Mostly I just try to offer her the pacifier, re-position her and turn on her lullabies to see if she'll just soothe herself back to sleep without needing to be picked up.  I know post-Glenn it is not a big issue to let her cry but the girl can really hit some shrill notes and listening to that through the monitor is just like listening to nails on a chalkboard so we prefer to get up and head her off at the pass so to speak. 

I swaddled her legs last night thinking that maybe she's flailing in her sleep and that's part of the problem.  She got a little angry though when I tucked her in like a little burrito and she couldn't put her legs just the way she liked them.   If she's fed, changed, comfy temp and clearly tired - anything else we can try? 

Joshua

Joshua is another heart buddy who is a few weeks post-Norwood who has had a rough 24 hours.  Right now he's being treated for acidosis and was re-intubated.  His surgeons are talking about taking him back into the OR to see if he needs a shunt revision.  His mom is currently alone at the hospital waiting for her husband to get back from taking care of their older children at home.  Please keep Joshua and his family in your thoughts today as the medical team works to find out the cause of the acidosis and hopefully keep him out of the OR. 

Good Week for Heart Kids

It seemed like July and August were just really rough times for a lot of our heart kiddos.  I'm so pleased to see that September brings a little brighter news. 

I'd like to wish a belated first birthday to Hope.  Hope had already undergone her hybrid procedure last year when we got Olivia's diagnosis and her mom's blog was the first real in depth look that we had into the lives of a family and the impact of their child dealing with HLHS.  Now as she hit her first birthday, she is also post-Glenn, growing and loving life.  It is so wonderful to see each of these CHD babies celebrate a birthday, they are that much sweeter.

Bodie is one of our heart friends out in CA.  He just had his Glenn this past week and was home in 5 days!!!  Although this is along the lines of the standard, Mr. Bodie had some complications after his Norwood but FORTUNATELY there were no issues this time and now he's home with his family to finish up his recovery.  We are very happy for them and are looking forward to seeing how he really grows now that he's got the Glenn in the review mirror.

Then we have one of our newer little buddies Jonah who was born the week before Olivia had her Glenn.  He's been home from his Norwood for about four weekish and the first few were pretty rough on him and his parents.  His parents were really great about staying in touch with the doctors and going over a care plan that worked better for everyone.  I just texted back and forth with his mom this past week and she said things are going much more smoothly which is wonderful. 

I know that there are many other heart kiddos out there that have been having some really good times and I would shout all of you guys out but this post would just go on and on!  We are rooting for each and every one of you. 

As for Olivia, she's now eating sweet potatoes, squash and apples.  Apples are by far her least favorite right now so I made some green beans and bananas today and we're going to see if we have better success with these new foods.  She is doing so well and we are thrilled that her six month birthday is coming up next week.  Yes, we're totally going to celebrate it because in our minds six months is a huge accomplishment. 

Early Intervention Evaluation

We had the state funded Early Intervention group out to our house today to go over their various assessments of Olivia in the past few weeks.  Overall nothing shocking, the little missy is behind her healthy heart peers.  We got the standard "She's doing really well considering all that she's been through".  For all you heart families out there wondering exactly what that means here it goes:

• Muscle Tone - Olivia is currently on the low end of the normal range meaning that her muscles are not as strong and lack the edurance of a 5 1/2 month old because of all the time she's had to spend on her back
• Verbal Skills - A baby at this age should be babbling more and making sounds that start to actually sound like trying to form sounds like Ma, Ba, Da, etc; these are considered the building blocks that will eventually lead towards talking
• Symmetrical Strength - Olivia has always favored using everything on her left side, we attributed that to the arm immobilizer she had on post-Norwood for virtually the 1st month of life.  Subsequently she prefers to sleep on her left side, play with a majority of toys, and even turns her head to the left (which doctors also have said is an indication of reflux)
• Posture - Because she's spent so much time on her back laying flat with post-op surgical restrictions she tends to put her arms straight out and resemble a starfish whereas ideally she should be curling up into a ball like a roly-poly or armadillo - haha I know I couldn't come up with a better example

In short the state recommends that we start physical therapy sessions once a week as soon as possible and schedule another assessment with the speech pathologist in 3-4 months to make sure that the verbal skills start coming along.  Brian and I have decided that we want to wait a month to see how Olivia does later this week when we can start some tummy time and then in another two weeks when we can start doing exercises by pulling her up to sitting with her arms and holding her under her arms.  We will start putting her in front of the mirror every day for a little bit besides bath time to see if that will help her with the language skills as well.  Quite obviously she did not appreciate being talked about for such a long time because she scowled at all of us and then last night she played on her activity mat and talked on and on for over an hour. 

Pediatrician Follow Up

This morning marked Livster's follow up appointment at the Pediatrician for a weight check.  I said prior to the visit that she would weigh about 14lbs 13oz and she was right on the money for Mommy!  Now Brian said that her feet were dangling off the edge of the scale a bit, so she was more likely 15lbish but I go with what the numbers actually read.  It was also at this appointment that the group has deemed Olivia a special patient so she will immediately go back to the exam rooms instead of waiting out in the general area and hopefully reducing her risk of exposure to any extra germs/infections...and like a rock star, she even has a special exit.  All that's missing is the limo - I say that tongue in cheek because my Mommymobile is very nice and sleek so she really does have her own limo service. 

Our doctor has said that the flu season looks to be setting in early this year and wants to move up the next round of vaccinations and administer the first Synargis shot once we get the "all clear" from cardiology. He stressed that all her caretakers need to get their flu shots ASAP and we need to keep her away from anyone that hasn't gotten the flu shot or has been sick recently.  This is of the utmost importance pre-Fontan since these heart kids have compromised circulation and respiratory systems already and we don't want to stress them out any more by getting a bug.  So please, friends and family, if you want to be around Olivia in the upcoming months during flu season - get a flu shot.  We realize that it will not guarantee that you don't get the flu, but it will lessen the odds or severity of it if you should get in touch with the virus. 

As for eating, we're a go for starting baby foods.  This weekend we gave her sweet potatoes for the first time and she really enjoyed them.  We'll continue through this week and start squash on the weekend.  To all you parents out there, how much food did you give your little ones at the beginning?  Did you start off the eating by giving a bottle and then the food or vice versa?  She has been gaining weight really well and I'd like to continue the trend as much as possible as we introduce solids.  Any input here would be much appreciated. Thank you all so much.

Sweet September

My birthday celebration carried into this weekend - I'm almost getting as bad as my mom who declares June to be her "Birthday Month".  Tonight we did dinner with my parents and Olivia.  At the end the waitress brought out a dessert complete with a candle for me to make the standard birthday wish.  For a minute I really couldn't think of anything to wish for, it has truly been the best year of my life.  I had Olivia on my lap squirmy as she could be and trying to grab the silverware off the table so everything that we could ask for from our five month old fighter.  All our family is in good health and the majority are local so we see them often.  Yes, life has been good to us. 

Yesterday marked what would have been my grandma's 96th birthday.  She's been gone for a year and a half now, but it wasn't long after she passed away that I found out Olivia was on the way.  I am definitely a believer in the saying that when one door closes another opens.  Even though Gram was too tired and sick to carry on with us she sent us Olivia to make sure that we'd continue to stay busy and always keep our focus on the future. 

Today is of course September 11th and although it has a poignancy for all of the country, it impacts us even more as Brian lost his Uncle KD - a New York Firefighter nine years ago today.  Each year around this time those memories of sadness and loss become more prominent, but I think this year Olivia might have helped lighten the grief a little bit.  Of course it is sad to know that she will have never met KD, there will always be stories to tell her of those loved ones that have come and gone before her.  How special that she has a real life hero in the mix of all our loved ones. 

When Olivia sleeps she often smiles which may be a very common thing with babies, but we always say that she's talking with the angels.  She has all of my grandparents, Uncle Giuliano, Brian's Grandpa Charles and Uncle KD up there, so the girl has a lot of people to talk to when she's having those sweet dreams.  No wonder she sleeps so long these days, she's exhausted from all the conversations they're having with our little one. 

Happy Birthday Mommy!

Dear Mommy,

You are the bestest mommy a girl could ask for. Thank you soooo much for always taking care of me when I am not feeling well, or my chest is hurting. No one knows how to hold me like you do... Daddy tries, but it is not the same thing. Every day this week Daddy has shown me pictures of you so I can see you and talk to you, but it is not the same as our special conversation we have everyday when you come home from work. I love it when you ask me how my day is, and if I am a beautiful girl, and if I missed you, because I always do! I don't exactly know what it is you do during the day, but I think it has to do with Old McDonald on that farm Daddy is always singing to me because Daddy says you bring home the bacon, and I know they have pigs on farms... with an oink oink here, and an oink oink there.... so that must be it.

Anyways, I don't have that bookface thing that grownups have so I wanted to write you and tell you that I love you all the way to the bright white ball in the sky at night and that I miss you very much. I am the luckiest little girl to have you for a mommy and I am sending big hugs and kisses all the way from Chicago on your special day. After all, everyday can't be my birthday, but its close.

Muah! Muah! Muah!
Squeeeeeeeeeeeeeeezze

Love,
Olivia

PS. Daddy says Happy Birthday

Somewhere Out There

Cue the music, I am having a moment right out of American Tale.  I'm sitting alone in my hotel room far, far away from my sweet sweet baby and loving husband.  I know where they are but I'm still pretty bummed out that I'm not with them tonight or the next couple of nights.  I made sure to sleep with a burp cloth for Livvy the last few night so she would have something to snuggle with and smell me.  Each time I talk with Brian and my mom I make sure to tell them to pass along my hugs and kisses to the little one. 

As for that "little one"...yeah...about that - she's not so little anymore.  Friday's cardiology visit was great.  She's grown once more now hitting 26 1/4" and weighing in at a svelte 14lbs 3oz.  We've completely taken her off Reglan (digestive aid) and are going to see if she can do without Prevacid as well.  She's still on the Enalapril and one dose of Lasix for the last month which was a little bit of a bummer to us, but all things considered she's still doing better than either Brian and I expected this soon after the Glenn. 

We spent much of Labor Day weekend outside enjoying all of the fresh air.  It made a ginormous difference in Olivia's sleeping, just lots of napping and really sound sleep at night.  Can't say that we minded that little change.  Yesterday I spent a good portion of the day making baby food!!!  We went to a farm not far from our house and bought a bunch of fresh Michigan apples, an acorn squash and some sweet potatoes.  I cooked them all up and pureed them to the desired mush and then promptly froze all three batches in ice cube trays to start her out when I'm back home this weekend.  I think Brian and I are really looking forward to giving her something other than a bottle.  Olivia must be feeling the same way because I gave her a little bit of the apples and she gobbled them up as soon as I could load up the spoon. 

Well that's all I have from San Diego.  Missing the family and thinking about all the fun I hope to have this weekend when I'm back.