I’m participating in 102.9 DRC-FM Miracle Makers. This fundraising event benefits Connecticut children’s Medical Center (CCMC), the region’s only academic medical center devoted exclusively to children.

Without CCMC Olivia wouldn’t be here today. She wouldn’t be bouncing around my living room pretending to play guitar and jumping every time the thunder cracks.

My good friend Laura and I have created a team called “Heller’s Heart Beats” after our favorite cardiologist, Dr. Heller. Without Dr. Heller we wouldn’t have met. Dr. Heller is an amazing doctor who truly takes care of ALL of us and not just Olivia. Our lives are truly better for having her in them.

Connecticut Children’s is committed to providing the highest level of care to the most children possible. This is accomplished through a unique family-centered approach that plays an integral role in the planning and delivery of treatment. In an effort to make kids better, faster, independent research is conducted and the latest technologies and procedures are utilized. Fun and play are used as therapeutic tools to help reduce fear, build trust and speed recovery.

You can help support me by making a secure online donation using your credit card. Click on the link below:

http://my.e2rm.com/personalPage.aspx?SID=1900827

For more information on how YOU can participate in 102.9 DRC-FM Miracle
Makers, please visit us at
https://secure.e2rm.com/registrant/startup.aspx?eventid=20178.

Don’t forget to tune in to 102.9 DRC-FM’s sixth annual Children’s Miracle Network Radiothon benefiting Connecticut Children’s Medical Center, August 28th - 30th.

I hope you will support my efforts so that together we can make a difference in the lives of the children and families just like Olivia, Lily and our family.

I’ve been avoiding this. Not that it’s “bad” but just typing it out makes it more real.

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I’m behind in the updates so I apologize for this being all over the place.

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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.

Olivia’s left chest tube site has become infected. It’s been red for almost a week.

Arnie mentioned it to Katie at the appointment on Friday. She gave us an rx for keflex to keep on hand but felt at that point it just looked irritated and not infected.

Today I took a look and it didn’t look any better - if anything it was worse. My mom also didn’t like the look of it. So I first tried Dr. Friedman - she’s on vacation this week. Next: Dr. Heller. Also on vacation today. Next up was Katie, Dr. Mello’s PA. I left a message for her since they were in surgery. And I emailed her a picture of the area.

She called back and recommended we put her on the Keflex. Stop the amoxicillin for the time being. She made a comment that if we weren’t such responsible parents she’d have us come in for a follow-up (awww - we’re responsible!). But I mentioned that we’ll see Dr. Heller on Tuesday, April 22 so we’ll follow up then. She said there’s nothing to culture at this point but if it were to start to bubble with puss under it, she wants us to call the office and make an appt so they can culture it.

The good thing is it’s not bothering Olivia at all - she’s acting normal and not complaining about any pain. No fever either. We’re noticing her appetite is definitely coming back as yesterday she was PUTTING the food away like nobody’s business! She must have had 3 pieces of cheese in the afternoon and then ate all her dinner PLUS some of the pizza I made for myself. Life is good

We had the pleasure of seeing Dr. Heller yesterday for a checkup. It turned into a half day affair with blood work, etc.

Olivia weighed in at 14.7kg and is 39″ tall. She’s grown 1.5″ since February :). Her oxygen saturation? 96 - 98%!!!! BP was 87/57 and heart rate is 120.

Dr. Heller did an U/S of Olivia’s heart. Heart function looks great. There was a bit more mitral valve reflux (back flow) - more so than before surgery. Dr. Heller isn’t worried about it at this point. She noted more fluid in her chest area so we’re increasing her lasix with a a followup xray on Friday.

I was able to convince Dr. Heller to call Beacon Pharmacy and have Olivia’s coumodin compounded.

Meds:

Amox 2x day
Enalapril 2x day
Lasix: 3x day - up from 2x a day
Coumodin 1x day (1ml = 2mg compounded)

After we headed to the Lab for blood work. This became a production because the lab couldn’t find us in the system (helps if they enter her last name correctly). Finally they did a blood draw after about 45 minutes of paperwork and running around to Registration (our first time there in almost 4 years!) Olivia didn’t have the EMLA cream on but didn’t cry at ALL when they stuck her. She’s a brave cookie!

Her INR level came back as 2.04 which is exactly where they want her to be. No blood draws for two weeks and we go back to see Dr. Heller on 4/22 at 9AM.

After 4 years of tears, of heart ache and fear…
After 3 heart surgeries, 1 stomach surgery
After 28 days in the hospital…
Countless stitches and blood draws…
After watching Sleeping Beauty 109x in the last 8 days…
1 pkg of M&Ms to use as bribery for medicine taking…

I got to walk out of this hospital. With a beautiful healthy, rosy cheeked little girl who now has pink fingers and toes and a gorgeous complexion. While I knew she was “blue”, and they told me I’d be amazed, I am FLOORED at how gorgeously pink she is.

Her spirit is still intact. She cries when they poke her and yet says thank you when they are done. So many people have complimented us on what a great job we’ve done with her. I don’t believe it was us … it was all God’s doing. She was meant to be here and we just gave her a chance to live.

We used to think oxygen levels of 80 - 83 were high. Today the monitor was beeping … why? Because she was hitting 100%. HA! To have it complain about 100 … who’d have thought it?

God is good. God is GREAT. My beautiful child, the one I was told to terminate because she would be so sickly and have all these problems … she’s came home today 9 days post surgery and she finally belongs to us.

Last night Dr. Heller stopped by and hugged me … I got choked up when I said “Thank You” because it really isn’t enough to say how grateful we are for her. There aren’t words available to say how grateful I am to that woman. How do you say thank you for the gift of your child’s life? I mean really … Thank You is nothing.

I haven’t really cried yet. I thought I would lose it pulling into the driveway. I got choked up when Maddie walked in the door and hugged me “I missed you so much!”. We’re a complete family - today is the first day of the rest of our lives!!!

So here are all the details from Tuesday’s cardiac cath…

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We met with Dr. Heller this morning.

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It went well … VERY well!

Olivia is now 27 1/2 lbs and 35″ tall. (2 lbs and 2″ gain in four months!) Dr. Heller was very pleased with how well she’s doing. Oxygen was 80%. Blood pressure was 80/53 which is AWESOME.

We talked at length about the Fontan … mainly my concerns. Because it’s NEXT YEAR. She reminded me to live in the moment and enjoy each day (which I typically do). I told her I was concerned about not having it done before kindergarten (not that I am rushing things either). She said they really try to get them finished up before kindergarten. Which was a relief and yet … that’s next summer. 18 months away … (OK, enough of that, I am making myself sick at the thought ).

So, it was a great appointment in all. Olivia showed off her new skill of being able to spell her name. And when Dr. Heller asked her “Como estas? (how are you?) she responded with “good!”.

Oh, and our next appointment? It’s not until July 5! That’s 6 months away!

Edited to add that this is the FIRST time in Olivia’s life that we’re going 6 months without seeing Dr. Heller.  So she’s doing great!