Happy Birthday Daddy

Daddy,
  I remember when Mommy still had me cooking inside her tummy that she used to tell me how much fun you and I would have once I came out.  I thought that you were pretty funny telling me all your silly jokes and putting music up to Mommy's tummy so I could dance.  I remember when you used to play with my right foot all the time that I was in the NICU and in the PSHU because that was one of the only parts of my little body that didn't have an IV or some other line.  You always made sure that I was sleeping before you'd leave my hospital room because you didn't want me to be there awake and alone.  Even now, you hear me make a peep on the monitor and I know you come running to make sure that everything's okay - even when Mommy tells you I'm just fine. 
 You always take time to sit with me at night and make sure that we play together as much as possible before it's time for me to go to bed.  You've feed me and change my diapers just as well as Mommy and I don't ever hear you complain about it.  I know I've heard you tell people that you couldn't have any better birthday gift than me but I don't think Mommy and I could have dreamed up a better Daddy if we tried.  I love you to the moon and back, double stampies, no erasies - and if you didn't know, you can't triple stamp a double stamp.  (Mommy taught me that one)
Love,
Olivia

8 Months Old

Olivia today you are 8 months old and my have times changed.  You're sitting up all on your own and have been for weeks.  You love to be standing now with Mommy or Daddy's help.  We recently put you in a big girl carseat and you love it!  The car is no longer the enemy - although you still hate sitting still at a red light, don't blame you there.  You're really starting to talk/babble a whole lot more, I can't wait for Miss Sue from PT to see how you've changed over the past two weeks. 

Daddy and I took you back to Hope on Wednesday to see Dr. Cuneo on the anniversary of your HLHS diagnosis.  She rarely gets to see babies after they're born and was so pleased to see you growing and healthy.  All your doctors and nurses could hardly believe their eyes.  Then we stopped over at the Ronald McDonald house to say Hi to the staff that was so good for us while you were in for the Norwood; they too couldn't believe how much you've grown. 

This holiday weekend we've spent a lot of time with family and letting everyone take the chance to get to know you.  We're really careful about the handwashing and anti-bacterial gel, but we want you to go to people without being afraid of others besides Mommy, Daddy, Grandma and Nonna.  Great Grandma and Grandpa are in right now too and you've been enjoying them since they last saw you at your Christening in May.  We've just been busy making memories for your holiday season, of course you'll have to be told all the stories while you study the thousands of pictures that everyone has taken of you.  We love you sweet baby girl. 

Week of Thanks - Day 7

Happy Thanksgiving to everyone!  Today I am most thankful for friends and family - singling out Brian and Olivia.  Those two have been an endless source of laughter and memories this year and have made it the best year of my life.  I hope everyone enjoys their time with friends and family today.  Have a wonderful day.

Week of Thanks - Day 6

Medical technology, we couldn't live without it in this day and age.  I know people fear that we have the power to do too much and perhaps we're interfering with nature and God's will; and I do believe there is a thing as trying too hard.  But then I look at any little kid that I see when we go to Hope for appointments and think they wouldn't be here without medical technology of some fashion. 

Because of technology one year ago today - a bittersweet day Brian and I were told that there was something wrong with Olivia's heart while I was still 20 weeks pregnant.  The morning started out bad when the perinatologist told us it could have been something as severe as a defect that was incompatible with life; but by the afternoon we had the HLHS diagnosis. 

We had one of the best fetal cardiologists in the country using all the tools at her fingertips to look over every structure and explain that while we would have a tough road ahead of us, there were surgeries and treatment that could and would allow for fair-excellent quality of life for Olivia.  So as the night of November 24th, 2009 came to a close, while we were trying to research the unknowns and sad scenarios of our HLHS battle - we had so much hope for Olivia's future because of the day and age and strides that medicine is taking daily.  I know not everyone's diagnosis story starts out as positive as ours and it all just sort of happened to work out that way because normal people weren't in the office because of the holiday, etc etc - but for us it was just the way it was meant to be and I couldn't be anymore thankful. 

Week of Thanks - Day 5

To all the other heart families and families of babies and children that have some sort of health struggle - I am thankful for you.  You reach out to comfort and soothe in times of need, answer questions or make suggestions when things were rough and boosted our spirits when they were low.  Our hope is that we have been able to pass on as much help, advice, support as others have given to us.  I have tried very hard to keep those moments in mind and "pay them forward" to other parents/families in need. Some have become what we hope will be lifelong friends, our ultimate goal to watch our little ones celebrate days, weeks, years together in the future. 

Week of Thanks - Day 4

This morning we are thankful that both sets of our parents are still happily married.  In a day and age where the divorce rate is approximately 50% and more and more couples are foregoing marriage - ours have over sixty years combined.  We were shaking our heads last night at an article describing how a couple has four sets of divorced/remarried parents to visit this Thanksgiving and needing to juggle all the visits in a short amount of time.  Not only is that the complete opposite of our story; our parents only live about 5-10 minutes apart from each other.  That's so much easier for us and obviously nice to be local which allows us days like yesterday where we went to my parents house to start getting the Christmas decorations up. 

On an Olivia update - she is starting to teethe in a bad way, full on crankiness set in yesterday and sure enough her lower gums in the front are all swollen and I can feel those little troublemakers coming in.  Just hoping it goes relatively quickly since she's clearly miserable.  :(

Week of Thanks - Day 3

Today I am thankful for my home.  It's not just some walls and a roof, it's a place where I can come at the end of day and retreat.  It's where Brian and I were able to learn and communicate together as a married couple (small condo = cranky couple).  It's the place where we brought Olivia home from the hospital and where we're making memories on a daily basis. 

A Week of Thanks Day 2

I am so thankful for my job.  In these times where people are struggling to find any work at all, I work at a company that has been more than flexible with increased doctors appointments starting midway through my pregnancy with Olivia and then continuing with the weekly Card appointments post-Norwood.  While I was out on leave a lot of people were in touch with me just to see how things were going and how I was feeling.  That kind of understanding is hard to find these days anywhere.  Even more importantly is that while I was getting a lot of flexibility to deal with all sorts of appointments, my job afforded me the kind of mental escape that I needed post-diagnosis and later between the Norwood and the Glenn.  Of course I have my moments where leaving Olivia to head to the office is at the bottom of my priority list, but I think any working mother struggles with those emotions.  I know having my job is just another thing to be thankful for this year.

A Week of Thanks

I am so into the Thanksgiving spirit and I figured I would put it to good use by taking a little bit each day to share what I am thankful for this year - assuming that it's a given first and foremost that we are most thankful that Olivia is here with us thriving. 

Today I am thankful for organizations like the Ronald McDonald house that allowed us to stay near Hope for the month that Olivia was hospitalized after her Norwood.  They fed us, wanted to take care of us and make overall life easier. The majority of the people there are volunteers that take time away from their friends and families to try and help out perfect strangers in some of the worst possible situations.  As unfortunate is to find yourself needing to rely on such a place, they make it the most pleasant experience it could be for a family in need. 

Pediatric Cardiology Conference Day 2

Day 2 started off the same as Day 1 with a few parents from other hospitals going up in front of the group to talk of their stories and the impact that the time between the Norwood and Glenn had on their lives.  As one mom said best "We want the doctors to keep as as informed as absolutely possible and yet other times we want to be blissfully ignorant".  I get that, I think I've even felt that desire to be blissfully ignorant but my obsession with knowing all the facts always wins out. 

Some of the topics yesterday were:

• Pediatrician - stressing the importance that all of these HLHS babies leave the hospital post-Norwood with a Pediatrician already selected; if possible actually having the Cardiology staff interacting with the Ped prior to discharge so that the 1st Peds appointment already has the baby's history in the chart
• Vaccinations - everyone's all over the board about these; some Peds are hesitant to do them and refer to the Cardiologist; I spoke up and mentioned how our Card team refers us to our Ped on any "normal baby stuff"; but that most families end up dancing between those two parties looking to get a straight answer *most important is the fact that in this Interstage timeframe, we as parents need to have a rough estimate of when will the pre-Glenn cath be scheduled and the Glenn to make sure that we work any vacc's in a workable timeframe*
• Discharge protocol - again, it varies so substantially between each hospital.  As discussed in Day 1, some hospitals will discharge directly from the PICU/PSHU; I don't agree with that, we would have been soooo clueless as to how to do things without training on the general floor pre-discharge.  But another Heart Mom who was there from Hope and our babies were literally hospitalized at the same time felt like she learned everything she needed in the PSHU to go home prepared - so then that raises the question; if it's possible to do the training up there - why isn't it consistent for everyone?

As part of discharge protocol, were we provided with the following?:

• Medication Chart that included complete list of mandatory and optional meds (like tylenol) with dosages and timing instructions - YES
• NG tube placement instructions in the event that she pulled her tube and I needed to replace on my own - YES
• Outline of symptoms and what to watch for signs of distress - YES
• Pulse Ox - YES (I was shocked to find that most hospitals cannot get approval for their parents to have at home monitoring)
• We in fact were given a little binder of information that included images of healthy heart and how a Norwood varies from that, a glossary of terms, pager #'s for the Cardiology team, etc - while I found all of that helpful, that would have been a Godsend on Norwood day 2 or 3 - not discharge time

What about all of you - do you think that you were properly prepared with training and information when it was time to be discharged?

As part of the parent breakout session yesterday we were tasked with trying to brainstorm what sort of help we would have wanted to receive from the medical professionals following diagnosis
Here's that list:

• "Welcome Kit" - complete with other parent mentors
• Binder broken out by stages: Understanding HLHS, Prenatal options, Picking your Care team, Delivery decisions, Norwood, Interphase, Glenn, Fontan

What else would have helped you in those days and weeks following your diagnosis if you found out prenatally?  What can we do as parents of babies and kids with CHDs to make CHDs as popular as the American Cancer Society has done for doctors offices, commercials, marketing, etc?

Pediatric Cardiology Conference

Brian and I were asked a couple of weeks ago to attend a Pediatric Cardiology Conference with some of the Cardiology staff from Hope.  Information was hard to come by to get an idea of what was going to be discussed, but we knew that it would be focusing on Single Ventricle babies between the Norwood and Glenn surgeries.  Yesterday was day 1 of the conference and it was more interesting than I can really articulate.  This group is all about getting hospitals on board to collectively share their data of these babies (most vulnerable time for a single ventricle baby is between the Norwood & Glenn) and together trying to work out ways that will reduce the mortality rate as the primary goal. 

That includes but isn't limited to:

• Parent care before discharge- up to 72 hours in the hospital where the parents are 100% responsible for care
• Determining whether it's better to discharge directly from the PSHU/PICU post-Norwood
• Whether or not it's a good idea to try and get a baby to take a bottle as a primary source of nutrition or use an NG or G tube right away
• Discharge instructions reviewed with the Heart Clinic Staff

I could go on and on, but let me just tell you, in the one breakout session that I sat through there were 6 different hospitals present and they varied WIDELY on what they did from Day 1 of that baby's life all the way through discharge.  It's no wonder that as parents we're all reading each others blogs thinking "Really - they did that, I wonder why..."  I just loved the opportunity to sit in a room with all of these professionals and listen to them talk freely amongst themselves when sometimes I think they would never be that open with a parent one on one.  I'll let everyone know what today brings...

Giving Back Update #2

The stuff just keeps on growing...check out the pic below.  Costco had great deals on really nice fluffy white towels and of course my mom aka Queen Bargain Shopper has been doing her part finding stuff at a steal.  The lastest Ronald McDonald Newsletter just came this weekend and their latest wish list also includes paper plates, paper napkins, plastic utensils - all that stuff that you sort of think "Huh, really?"  Yes, every little bit helps!

Oh and you ask what's with that plywood in the background - that's a nifty little trick that Brian's mom taught me for hosting dinner parties and you're dining room table is too small.  Just lay a table protector down and then a sheet of plywood covered with a tablecloth.  No one's the wise and you can virtually double your space.  I'd say we'll take it and put it in the basement, but it's such a pain to lug down our staircase so it'll be the backdrop for the duration I think.

1st Synagis Shot

We can check the first round of Synagis off our list for this cold/flu season.  The appointment didn't go quite as planned though since we started off by having to hang out in the general waiting room instead of being taken immediately back to the exam room.  Grrr - we've never had any issues on previous visits but for some reason her chart wasn't flagged today.  Next order of business was to get an a current weight because they the nurses draw up the Synagis according to that day's weight.  Olivia weighed in at a svelte 17 1/2 pounds!  No wonder she can wear 12 month clothing without it looking very baggy on her. 

The nurse left and went to prep the meds.  Minutes sort of ticked by and then it was 20 and we were wondering where in the world the nurse was.  Finally there was a knock at the door and she was ready to start the dart practice.  First she wanted to start with the oral Rotavirus vaccine - Olivia has historically had a problem with this one, either the nurses give it to fast or something is up with the taste but she projectile vomited the first time at 2 months old and dry heaved last month until the nurse allowed me to finish administering it.  This time with this particular nurse, she wanted to do everything by the book.  I couldn't give the vaccine because it's a med and against policy in the office.  F-I-N-E...but to her credit, she was really slow and patient about it and everything went just swimmingly.

Next was round 2 of the flu/pneumonia shot...instead of restraining her down at the end of the exam table like last time we asked if we could hold her.  Again, has to be by the book, we compromised and were able to be the ones restraining Livvy while she had to get the shots.  First shot went in and I was expecting them to be like rapid fire - but not so much.  Sigh...she sort of took her time between each which just prolonged the pain.  Then as she moved to the other leg to give the 2nd half of the Synagis shot (oh yes - Olivia weighs enough that the Synagis has to be divided into 2 doses), the nurse withdrew the needle about mid-way through the shot.  WHAT!?!?!

There's Olivia on the table turning purple aghast with the stinging and each site is now bleeding, the nurse tells us we can pick her up to comfort her.  She's going to give her a little break before she comes back to finish up the Synagis in the 2nd leg.  Why you ask?  Well she felt that there was too much Synagis in that 2nd injection to give in one site so she needed to stick her a 4th time to finish off the dose.  Oh my goodness, I almost became unglued.  About five minutes went by and Brian was sitting there holding her when the nurse finally came back to finish up the Synagis.  This time she decided to take pity and give the rest of the dose to Livvy while Brian held her.  Thank goodness.

The moral of the story?  Had the nurse evenly split the Synagis between the two syringes it would have only required two injections instead of the three that Olivia ultimately ended up needing.  Tylenol and Moitrin are going to be our friend tonight.  At least we now know what sort of questions to ask the next month before they start giving the shots.  Sheesh!

Clap Your Hands if You're Happy

Another milestone met this morning - Olivia is now clapping!  For a while now whenever she would learn something new or really try to do things on her own Brian and I have been there clapping and saying "Good Job Olivia!".  She definitely likes to be told how good she's doing and what a big girl she is.  This morning though, we clapped for her and she got her two plump little hands togther and tried to mimic us.  There's no sound yet, but she's definitely connecting each time that she brings her arms together.  She loves to hear "Yay Olivia!"  Big smiles all around this morning. 

Giving Back Update #1

Donations are already coming in!

We have quite a bit of sock puppetesque stuffed animals and Christmas themed baby blankets for the PSHU.  As for the RMCH we have four sets of white sheet sets and two mattress pads. 

I've already had someone volunteer to buy 10 Boppy Covers and we're looking around for the best priced Boppys. 

As for donations for the RMCH - gently used toys, pots & pans, white linens are welcomed.  So are toiletries, cleaning supplies, etc so if you think you may have something that could be of use, don't hesitate to get in touch with Brian and/or I. 

We're hoping as we get closer to 11/24, that our entire living room will be full of stuff to take down to Hope. 

Happy Halloween

She came out quacking like a duck at birth so it was only appropriate...

The cutest chick on the block with her parents

Finishing up the weekend strong by going solo with a bottle

Tis the Season

I will post pics from this weekend later today, but first I have to bask in the glory that is listening to that very first Christmas carol of the season.  November 1st has marked the start of the holiday season to me since my freshman year at IU.  I was homesick and started listening to Christmas songs to bringten my days.  It has become my very own tradition.  Tonight Olivia will be sleeping in her first Christmas PJ's.  I'm so excited to start sharing all our traditions with her. 

Hope everyone had a fabulous weekend, we definitely did!