Olivia saw Dr. Heller this morning.

Our first stop was the lab to get her INR level checked. I brought along a candy necklace for distraction sake and we did the blood draw without the numbing cream (yay!).

Then on to see Dr. Heller who was wearing scrubs! I don’t think I’ve ever seen her wearing scrubs so it was a bit shocking to me :). She looks cute!

Olivia is the same weight and height as two weeks ago (14.7kg - 32lbs, 39″). Dr. Heller didn’t bother with the EKG today - she just listened to Olivia’s lungs and heart. She commented that her chest tube scar looks really good (the one that was infected). We still have a scab on it but it’s looking much better.

Next was an EKG - the backflow is still there but no WORSE (or better) than it was post surgery. On a great note, it appeared there was NO more fluid in her chest (wooHoo!). To confirm we headed down to xray.

Xray was pretty quick and then back up to Dr. Heller’s to verify the xray looked good. She had me into their conference room and we compared the xrays from today, two weeks ago and 3/10 (our pre-op appt). The xray looked AMAZING. Interestingly enough, Olivia’s diaphragm on the left is a bit higher than on the right - it’s just the way she is made.

So the “plan”:

I got a couple pics of Dr. Heller with Olivia that I’ll post in the next few days.

Of course we cannot go too long without talking to Dr. Friedman - Olivia must think that she’ll be jealous that Dr. Heller’s been dealing with us alone LOL. So tonight I noticed her cheeks are red and bumpy (great). We first called Diana to confirm Olivia didn’t eat anything new or unusual today. Then I called Dr. Friedman’s cell and we both came to the conclusion it’s an allergic reaction to the Keflex. So we gave her a dose of benadryl and we didn’t give her an antibiotic tonight. Tomorrow we’ll start back with the amoxicillin.

Never a dull moment!!!

Olivia started back at Diana’s yesterday. And it is so NICE to have things back to normal again. She’s feeling GREAT; running around and life is just SO GOOD. The first three months of 2008 was sheer hell waiting for the surgery and now … it’s just perfection.

And now I’m going to share a secret with you all that I ask you do NOT share with the girls as this is their joint birthday gift. We’re taking the girls to DISNEY WORLD in August! We were going to wait until next year but honestly, we just need to get away and be a normal family again in our favorite place in the World! For us, there’s nothing more enjoyable than Disney together. We’ll be there for our 12th wedding anniversary.

Pictures

We took the girls to get their pictures done on Sunday.  I had forgotten how difficult this age is to get them to just stand there and smile! Olivia was very fiesty and didn’t want Maddie holding her hands or anything.  We ended up getting the pictures, but I was sweating … it was HARD work!

We also visited Santa but Olivia would have NOTHING to do with sitting on his lap. She saw him, screamed NO and put a death grip on my arms.  We did get a beautiful picture of Santa and Maddie taken and once someone remembers to bring it home from his office we’ll scan it and post it.

A gentleman stopped me in the mall after we had the pictures taken. He said “I assume these are your daughters?” And I said “yes”. He said “They are very beautiful. I was watching them in the picture people.  You are very blessed.”  I’ll admit I got a bit teary. I touched his arm and said “Thank you so much. You have no idea how truly blessed we really are. Merry Christmas” and we walked away. I figured he didn’t need the whole story but his words made me smile.

Olivia’isms

She is really starting to show her personality and let you know what she does and does not like.  For example: she has started to not like being buckled in the car seat so she’ll arch her back when I put her in.  Nothing a little tickling can’t fix.

She is starting to repeat words you say.  She can now say apple and Olivia (although it’s hard to hear “Olivia” from what’s she’s saying but she’ll point to herself and say it when you ask her “who’s this?” and point to her).

She went through a few weeks of separation anxiety where she would cry when we left her at Diana’s.  This week she’s been happy to be there so it could have been related to her not feeling well.  She had a stomach bug a few weeks ago (November 17?).

She has been quite clumsy lately!  She banged her head good a week ago Monday and it left a nice sized egg on her forehead. She bit her lip TWICE on Thanksgiving.  And on Friday she somehow ended up face first into the coffee table cutting her eye and giving herself a nice black eye just in time for pictures.  I’m ready to wrap her in bubble wrap.

Maddie’isms

Maddie came out with this last weekend and I couldn’t help but jot it down.  “I smell like a rose and that’s why they call me Maddie Rose”. Arnie and I were laughing hysterically.

Maddie’s urine culture showed no more blood so we’re just waiting on the results of the test for calcium.

Disney

Well, tomorrow Memere, Maddie & I are on our way. We return late Sunday evening. I will update again when I return.

My mom, Maddie and I are going to DISNEY for a long weekend!  We leave on Wednesday evening, November 30 and return Sunday afternoon, December 4.  Magical Memories Travel is having a “meet” and a few ladies from my online mother’s group are going including a woman who is flying in with her family from Australia!  We are looking forward to a nice weekend away and seeing the parks decorated for the holidays.

Olivia was released on Monday afternoon.

Tuesday we saw Dr. Friedman for a followup. Olivia lost 5 oz since her 9 month checkup. The previous weight was incorrect. Dr. Friedman believes that Olivia has a “sore throat virus” along with a tummy bug. She gave us the green light to travel though.

Olivia is feeling better but is still not 100% herself. She is clingy and scared of strangers. She seems to be throwing up once every other day. We’re hoping she’ll start feeling more like herself soon as it’s been almost a week that she’s been sick.

Next update will be after 5/20/05 since we’re headed to the Happiest Celebration On Earth! ºoº

Our little miracle is 9 months old! It’s amazing to think back to where we were 9 months ago and how far Olivia has come.

Olivia weighs 17 lb, 13 oz (12 oz gain from last synagis shot on 3/29). She is 27.25″ tall (3″ gain from 11/28/04). She is in the 25th - 50th percentile for both height and weight. “Just perfect” according to Dr. Friedman.

Dr. Friedman was thrilled with Olivia’s developmental progress. Exactly where she needs to be. The only question I answered “No” to was if she was furniture cruising yet.

We have been given the green light to start Olivia on whole milk! So bye-bye expensive $22 for a 1 lb can of Alimentum formula! She just suggested we also give her polyvisol w/ iron (liquid vitamin) in a cup of OJ if she’ll drink the OJ.

We talked about our upcoming trip to Disney. She said Olivia won’t get anything out of it but she feels we deserve this trip after everything - especially our Maddie Rose who has been an absolute trouper throughout the past year. She suggested we bring Olivia in to weigh her the day before we leave. This is so if we end up in the hospital down there (due to dehydration, etc) we know exactly what she weighed before we left.

She recommended packing motrin, unflavored pedialyte and benadryl (in case of allergic reaction). I need to contact Dr. Heller to find out if I can give Olivia benadryl with her heart issues and what the dose would be. I also want to get the name of a recommended cardiologist down there in case of emergency.

So that’s all going on here right now. I’ll try and update again before our trip!

Olivia had her followup appointment with Dr. Heller today.  It went EXTREMELY well, as always!

Olivia is still weighing in at 14 lbs, 13 oz.  They measured her but I didn’t get that written down.  Her EKG looked great.

We met first with an adult cardiologist who was visiting the practice. He’s starting to get some single ventricle patients so he was visiting to learn the anatomy, etc.  It made us happy to know that the single ventricles are growing to the point that they have to leave the pediatric groups!

Olivia’s oxygen level was 90%! She’s now big enough to wear the finger monitor versus the infant toe monitor which drives Olivia crazy!

They also did an ultrasound and Olivia’s valve looks amazingly great. She used to have “some” leakage (back flow) and now it’s “miniscule”.  So Olivia no longer needs to take her captopril medication!  So we’re down to Amoxicillan and aspirin for medications.

Dr. Heller called Olivia her star patient (again) and called her the poster child!

We asked about Olivia’s bump on her chest. Where the chest bone comes together she has a bump which apparently is very common in heart kids and actually Olivia’s is not as pronounced as others.

We also asked about taking Olivia on vacation. Arnie and I are aching (ok, *I am*) to take Olivia and Maddie to Disney World. For me, what kept me going throughout the surgeries and hospital stays was the thought that one day Olivia would be healthy enough to go to Disney World and meet Mickey Mouse.  Well, Dr. Heller said “GO FOR IT!” and the only restriction is that Olivia cannot ride Splash Mountain. *LOL*

So we’re going to Disney World in May!!!

Our next appointment is not until June 2 at 9AM.

My girlfriend Lori from my mother’s group is in Walt Disney World this week with her family. Last night they were at Magic Kingdom watching the fireworks show which is titled “Wishes”. She sent this to me this morning:

Tricia, every now and then my husband does something that melts my heart. Tonight was one of those times. When we were walking out of the Magic Kingdom he asked “your friend who is pregnant with the baby who will need heart surgery, she’s one of the Disney gals, right?” I said, yeah, that’s Tricia, why? He asked what’s her name (meaning baby)? I told him Olivia and he said “well, you can tell her my wish (as in Wishes, the show) is that sometime next year that they can bring a healthy, happy Olivia here to see the show for herself.

It’s our wish too. Ours too.