Doctor's update

Another Wednesday, another doctor's appointment down!  Today was a big deal, the doctors wanted to see how Olivia's been progressing in terms of growth since some heart babies taper off towards the end of the pregnancy.  Drum roll please....she is estimating in around 6lbs 4oz at 34 Weeks and 5 Days.  Now of course this is just an estimate and it errors +/- 1 lb in either direction.

Of course this is where the gender gap comes in because Brian hears that and says "well still 5lbs 4oz isn't bad and she has 4 more weeks to gain some more weight".  I'm thinking "oh geez, she could be over 7lbs and still gain at least .5lb per week for the next four weeks!!!!"  Oh well, as I've said numerous times before, bigger is better for Olivia especially when you think that the surgeons need to work on a heart approximately the size of a walnut-every little bit helps.

So while Olivia got thumbs up on all her tests, I didn't fare as well this time around.  My BP was a little higher than it had been throughout the pregnancy.  I personally attribute this to us eating lunch right before we walked in the office, but nevertheless they were still concerned.  Pairing the slightly elevated BP with the fact that my feet have been really swelling since this past weekend and they are now going to watch me like a hawk.  I'm personally not worried about it, if we've made it this far in spite of the uphill battle and Olivia continues to grow and thrive, then I say the homestretch is looking pretty promising.

Hopefully I'll get more familiar with this blog thing that I'll be able to post shower pics this weekend, if we're really lucky maybe some nursery pics as well!

Hoops for Life Fundraiser in Honor of Olivia Giuliana

I've had a few requests for information regarding the fundraiser information that my cousin Carmen is running through her middle school in Olivia's honor.  So by popular demand, here's the link to the webpage:

http://honor.americanheart.org/site/TR/HoopsforHeart/HFH-MWA?px=1974546&pg=personal&fr_id=1294&et=eCBV6xdB3JxD61Ww9tmEwg..&s_tafId=3979

Thanks!

Little Livvy is so Loved

Oh Olivia, what a little stinkerbell you are already.  Mommy has had all these grand plans since your diagnosis of how I'm going to have to work extra hard to make sure that people don't treat you extra special and that you don't get more than your fair of spoiling from all your grandparents and aunts/uncles.  Well if the baby shower that your Grandmas threw in your honor this past weekend was any indication of how they're going to treat you in the future, we have problems Little Missy. 

Your Grandmas completely outdid themselves.  Nonna (my mom) didn't have a crafty bone in her body when I was little and needed help on school projects-she pretty left that to your Nonno.  Suddenly, you are coming along and she made a diaper cake all on her own as well as a bunch of other projects that required some sort of craftiness.  Your Grandma Sue (Daddy's mom) typically isn't known for her organizational skills and yet for you-she had lists and was prepared for your shower with weeks to spare. (disclaimer: I say the above comments about the Grandmas with total love and affection)  Amazing how you aren't even here yet and you had these two ladies running all over the place to make sure that the shower was as picture perfect as it could be!  I have no doubt that they are going to be all over Mommy once you're here to make sure they get enough Olivia face time. 

Your Great Tia Rosa, Tias Tere, Mari, Rosalind and Maria also went in together and made you the sweetest little t-shirts for everyone to take home as a reminder of how special you and your heart are to the family.  They are precious, you'll have to take my word for it until you're actually here and able to sport one around.  There were tons of other wonderful thoughtful gifts that everyone gave you/us that you will be able to check out soon enough.  Daddy and I were blown away by everyone's generosity and you should be too! 

To cap off the perfect shower and excellent weekend, your cousin Carmen is also participating in a fundraiser for the American Heart Association in your honor.  She's specifically raising awareness about HLHS on her site and it's just another example of how our entire family is really taking the time to think about you and your special heart. 

Yes my Little Livvy, you are so so loved

Game on - 5 weeks and counting!

Our now standing Wednesday date with the MFM group at Christ went really well today.  Induction is definitely set for March 25th pending no surprises from Miss Olivia.  She has plenty of amniotic fluid, good movement and more hair than either Grandfather can hope for in the future.  Dr. Ilbawi typically performs surgeries on Mondays or Thursdays so the Norwood should be up fairly quickly on the agenda for the 1st week of April. 

We had another fetal echo and this like the rest just showed that Livvy's heart is still growing as the rest of her does and the anatomy is doing its best to compensate for the missing left ventricle.  All in all pretty non-eventful and just the sort of checkups that I like to have, "no news is good news".

Next week will be a growth scan, so we should get an idea of where she's at size and weight.  If today was any indication, we can expect her to be ahead in the weight category.  Everyone who scanned her commented on her cheeks and rolls.  What can I say?  The girl loves food like her Mommy!

I Slept Thru that Earthquake...

Ok, first of all prepare yourself.... new shooter here, Daddy needs a new pair of shoes. OK so I know you are all use to reading at a Shakespearian level of English here on Olivia's blog so lets bring it down a notch or two to a platform that I am more comfortable with... we'll just call it Dr. Suess-ology (you know one fish, two fish... type of thing).

So in deed yesterday was a great day with all of the good news that we got. It did not start off as bad for me because I did not even realize there was an earthquake in the Chicago area. For me it was a great day, I had taken a Vaca- from work and it was an L&B day off.... at least until we had to leave for the hospital. But we put our buy 1 coffee get a Decaf for the pregnant mamacita free coupon to good use at Caribou Coffee for an hour first. Lisa gave you all the detailed medical mumbo-jumbo info, its my job to let you know of some of the other little semi-important things we learned:

• The cafeteria special in Hope Hospital was a grilled cheese sandwich. The cafe special in the main Christ Hospital was Grilled Chicken Fajitas.... so we know where to go now.
• We have to be careful when making sounds or touching Olivia in the hospital. Anything might stimulate her heart rate. So all visitors must remove all of their loose change from their pockets. What can I say, its one of her favorite games. I shake the change, she kicks mom.
• I learned what NICU and the PSHU stood for, but I am just going to call them the "Nick-You" and the "Pee-Shoe", respectively.
• It feels very awkward sitting in the NICU with your 8mo. pregnant wife and the doctor (both sitting in $10 plastic chairs) while I am relaxing in a plush rocker/recliner/roller.
• The gift shop sells gum for $.35
• Livvy has Lisa's "punky brewster" attitude, politely displayed by her sticking her tongue out at us just in time for our ultrasound tech to grab a photo.
• I don't even know the staff at the NICU or the PSHU on a first name basis and somehow I already feel like Livvy is in the best hands, and that we are going to encounter some of the nicest, warmest people throughout this journey
• The Ronald McDonald house is incredible. As a kid I never knew that it was anything more than a game for me to play at the register with my dad's loose change, but it is so much more than that. I slept so well last night knowing that when I have to go back to work that Lisa will be safe and comfortable in that home.

If you want any other medical translations, feel free to ask. 6 weeks and counting and the nursery is almost finished with its makeover. This weekends tasks: drywall, muddin' and tapin'.

Thats all folks'

Startin the Day with an Earthquake

One would think that starting off your day with an earthquake would definitely be a sign that it's best to pull the covers over your head and wait it out until tomorrow.  Unfortunately for us, we had a lot of things on today's agenda that needed to get done and no amount of excuses were going to be good enough to shirk our duties being that most of today was going to revolve around Olivia and planning for her arrival.

We started off the day meeting with Dr. Galley-one of the Neonatologists at Christ and will be one of the docs attending to the Livster while she's in the NICU.  Totally coincidental Dr. Galley is friends with one of my really good friends from work; so we got to sit with him, pick his brain and get a tour of the NICU (funny how some things work out).  Dr. Galley was very open with us and probably a little more serious than some of the other doctors who have talked to us about Olivia's condition but overall we just appreciate the candor and information that he gave us.

Some new info learned from Dr. Galley

• We will likely only spend about 10-15 minutes with her after delivery before they take her to the NICU to get settled in with an IV and underway with an echo to get a clear image of her heart anatomy
• While Olivia is in the NICU, she will only be allowed two guests at a time and one of them needs to be a parent (essentially saying that only one visitor at a time at her bedside)
• Most of these HLHS babies will need to be intubated (put on a ventilator) pre-op as a side effect from the Prostaglandin drip that she will need to keep her PDA open prior to surgery
• Once she's on the vent, she will not be able to be held any longer - this will continue to post-op as well
• Surgery could be performed as soon as 3 days after delivery but could really take up to a couple of weeks depending on how she's doing

Next up was my appointment with MFM - ALL IS WELL!!!  Olivia is growing really well, she seems to have a full head of hair and she took a moment to stick her tongue out at us.  I can't say that I blame her, I would be doing the same thing if I were her.  She's currently head down and a tentative induction date has been set for March 25th.  They also want to start seeing me on a weekly basis so I will have a standing Wednesday date. 

After all that good news from MFM, we met up with Janette- our fabulous Cardio RN who took us around the Pediatric Surgical Heart Unit.  As sad as it is that such a unit has to exist, it was really wonderful to take the tour start to meet the faces that we'll be seeing on a daily basis and the 10 bed unit is seriously impressive. 

Lastly we checked out the Ronald McDonald house.  What an amazing place that is...I think I have found my calling for a feel good job in the future if we're financially secure enough for me to make that leap.  Not only is it gorgeous, but the planners really thought of everything when they put those rooms together.  Hopefully when our time comes, we'll be able to get in the reasonably soon after Olivia's arrival.  The best part is it's kiddie corner from Hope Hospital so I could be at her bedside within a few minutes if necessary. 

As skeptical as I felt last night, I feel that positive today given everything we saw, heard and accomplished.  I feel so blessed.

That Sinking Feeling

You know when you get that feeling in the pit of your stomach?  It's not nerves or butterflies, but it's almost like a cold has washed over you.  I have that going on right now and worse yet is that tomorrow is our next appointment with the MFM group for a check up on Livvy.  I have no reason to think that anything's out of the ordinary.  She's moving around as per her norm, movements have gotten a little less vicious over the past week or so but I can attribute that to the fact that I think she's outgrowing her cozy quarters.
 
I guess some of the angst can be put down to the fact that Brian and I have had a run of bad luck for the past week.  Nothing substantial or earth shattering, but you certainly prefer for things to be status quo whenever you've got a doctor's appointment coming up, especially in our particular situation.  Tonight I was in a particularly foul mood with the late rush of snow, Brian missed his train coming home from school and you know things just aren't going the way that I had envisioned them.  Of course, should our appointment tomorrow give us the thumbs up that everything is still smooth sailing; all of these obnoxious things over the past week will be nothing more than exactly that - obnoxious.  But still...tonight I have that creepy feeling that something is going to go awry tomorrow.

I do realize that the best thing for me to do tonight is to relax, get some rest, and keep a positive outlook on what tomorrow will bring.  Sometimes it's just all easier said than done.  Here's to some peace of mind.  I'll make sure to post an update tomorrow on the outcome of the doctor's appointment - good or bad.

Good night

Heart Awareness Week

Just a few interest new tidbits that I was able to find via one of the other Heart Mom's blogs

• Only about 30% of the children who need a heart transplant receive one in time.

• About 40,000 units of blood are used every day yet only about 5% of the adults, the only ones who are eligible to donate blood, do so. Someone needs blood every three seconds in the United States; that someone is often one of our heart children.

Education is the first step in helping these children live happier, healthier lives

The Chosen Mothers - by Erma Bombeck

I found this on one of the heart groups I belong to and found it comforting so I thought I would share.


Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

Did you ever wonder how mothers of children with life threatening illnesses are chosen?


Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.


"Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard."


Finally, He passes a name to an angel and says, "Give her a child with cancer." The angel is curious. "Why this one God? She's so happy."


"Exactly" smiles God, "Could I give a child with cancer a mother who does not know laughter? That would be cruel."

"But, does she have patience?" asks the angel.


"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it."


"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has it's own world. She has to make it live in her world an that's not going to be easy."


"But, Lord, I don't think she believes in you." No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps -"Selfishness? is that a virtue?"


God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see...ignorance, cruelty, prejudice...and allow her to rise above them." She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side."


"And what about her patron Saint?" asks the angel. His pen poised in mid-air. God smiles, "A mirror will suffice."

Happy Heart Month!

Each year brings something new to our lives and this year is no different for Brian and I.  This year, February has taken on a whole new meaning and will forever more.  It is National Heart Awareness month, with specific focus on Feb 7-14 for obvious reasons. 

I was on another family's blog and found these facts regarding Congenital Heart Defects, so I thought I would share as some of these are absolutely staggering:

• Congenital heart defects are America's and every country's #1 birth defect; nearly one of every 100 babies is born with a CHD
• CHDs are the #1 cause of birth defect related deaths
• CHDs are the leading cause of all infant deaths in the US
• Each year approximately 40,000 babies are born in the US with a CHD, thousands will not reach their first birthday and thousands more die before they reach adulthood
• Almost half of all children and adults with complex CHDs have neurological and developmental disabilities
• There are an estimated 2,000,000 CHD survivors in the US
• For the first time, more than 50% of the CHD survivors are adults
• 91,000 life years are lost each year in the US due to CHDs
• The cost for inpatient surgeries to repair CHDs exceeds $2.2 billon per year
• More than 50% of all children born with a CHD will require at least one invasive surgery in their lifetime
• There are more than 40 different types of CHDs, little is known about the cause of most of them and there is not prevention or cure to any of them
• In the US, twice as many children die from CHDs each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHDs

Whew...that is a lot of information to digest and unfortunately most of it is sad.  That being said, all of the numbers are looking more positive as time goes on and technology keeps improving.  There's not a whole lot of history for patients with HLHS as adults because the oldest survivor is only 20 and in college right now. 

Not a whole lot of updates on the personal front.  Daddy worked on the nursery a lot this weekend and it's looking great.  We have another checkup on the 10th where we will hopefully get a tour of the NICU, Ronald McDonald House and Dr. Ilbawi's post-op unit.  That should all prove to be somewhat useful and comforting, albeit a little depressing.  Either way, I like to have all my ducks in a row and this is no different.  Olivia continues to grow and stretch her way in any direction she pleases, but I'm sure I'll miss some if not all of these movements when she's been evicted.  All in all, keep an eye out this month, I think I'll be updating more frequently just due to the correlation to February and Hearts.