Pre-Huskython event

Today we went to CT Children’s Medical Center to have the kids decorate a banner for the students. They also decorated “awards” for the awards ceremony which will be presented for the highest fundraiser / most team participation / etc / etc).

These awards will be used at the Huskython event as well as the first annual Quinnipiac-a thon. Both are dance marathons benefiting CT Children’s Medical Center and Children’s Miracle Network Hospitals.

Posted April 10, 2012, but backdated to February 12, 2012 for historical purposes

2012 Champion representing CT Children’s Medical Center for Children’s Miracle Network Hospitals

We were informed the last week in January, 2012 that Miss Olivia had been selected as the 2012 Champion representing CT Children’s Medical Center for Children’s Miracle Network Hospitals. What this means is that she’ll be representing our great state of CT throughout the entire year at many events for the Medical Center. In September she will be going to Washington, DC to meet with legislatures and then to Orlando, FL for a Children’s Miracle Network Hospital conference in Walt Disney World!

We have attended many events already in this capacity and I will be catching everyone up on these events now that this is “public”

(published April 10, 2012, but backdated to February 1, 2012 for historical purposes)

Champion Pizza Party

We were invited to the Champion pizza party at the Foundation. This is where Olivia was officially introduced into the CT Champion family. We got to catch up with some families we already knew and meet a bunch of older champions. I am so proud of her, that she’s part of this “elite” group of miracles. She spent the evening with her “hospital” buddy, Becca. Becca was a micro-preemie and is now 8 years old. They were never in the hospital together but have gotten close from all the events we do together.

While Children’s Miracle Network Hospitals hasn’t approved Olivia yet and therefore it’s not official, Olivia took over the reins from Marcquille who was the 2011 Champion representing CT and CT Children’s Medical Center.

Published April 10, 2012, but backdated to December 27, 2011 for historical purposes

Long overdue update

So it’s been a while, a VERY LONG while. Life gets in the way and I can promise you when you don’t hear from us, it’s because there’s nothing but NORMALCY to report.

I’m not sure what happened to most of the links on this site, I will take a look when I have time (ha) to figure it out.

I’ve been reminded by my husband, my family, my CHILDREN (who are now old enough to read this blog and POST comments on it!). So here’s the very long, very overdue update.

Continue reading

Please help us help others

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.

HOME

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!!!

April 1 – we are tubeless!

And that’ s no joke!

It took ALL day (until 9:30PM) but we finally got the tube out! It had really stopped draining and we now know why … it was twisted two times over right near her stomach! (eek!) Katie took it out and after I asked if Dr. Mello would have removed it anyway. She said yes.

So tomorrow is the big day. Release day. We get to go home and live our lives forever and always … without anything hanging over our heads anymore.

Sorry for no update today but I kept waiting so we could post this.

March 31 – a good day

We walked and walked and walked some more today. I think we did at least 7 laps today. She was cracking up the nurses because they would hear her coming. A lot were very impressed with how mobile she is but then again, this is our Olivia we’re talking about!

Even Katie commented on how frequently the fontan kids lie in bed for 2 weeks waiting for the chest tubes to dry up and then they forget how to walk … Olivia’s been cruising the halls since she came up here. Plus I believe it’s been really good for her to drain while being up. She didn’t nap long today and was WIPED out by bedtime. By 9PM she was snoozing away. Woke up at 10PM to pee and then immediately back to sleep.

Kate was our nurse today and she pretty much gave us free reign to walk. We were disconnected for hours today which allowed us to come and go as we pleased. We still had to use the grocery cart to put her chest tube drainage chamber in (and at one point even the IV pump for her antibiotics) but it was well worth it. Olivia really enjoyed the change of scenery as well.

Eating today was almost normal: She had a blueberry waffle and bacon for breakfast; blackberries for snack (yummy); a hotdog and ice cream for lunch; popsicle for snack and then she picked at dinner today (spaghetti with sauce, chocolate chip cookie, shake).

She has been fighting us (well, me) on taking medicines – even TYLENOL. So we had to start bribing with M&Ms. The coumodin has to be crushed and we finally found the magic potion — apple juice in a syringe. We told her it was in there because I didn’t want it coming back out.

No blood draws or chest xrays today. It was pretty much a mellow day. The cardiologist covering the floor, Dr. Salazar, didn’t see a point in sticking her today to check her INR levels since somehow she got less of a dose than was originally prescribed (we were supposed to be given 1.5 – up from 1.0; she was given 1.25). No need to check it since it wasn’t the right dose. I like her thinking :).

Olivia’s back to acting like Olivia. Sweet; shy; loving; giggly. There is nothing more beautiful than hearing her sweet giggle which she shared with me all day. We sat and watched Chicken Little and she giggled away. Oh I love this child!!!

Poor Maddie was really praying we’d be home tonight. She was angry that she couldn’t come up to see us but after school, drama club practice and homework … there really wasn’t much time. Add to that Arnie coming in late and she’s dragging in the morning. I told her we’ll be here at least two more nights because I cannot break her heart again :(. Hearing her cry made me want to cry. It is tough because it’s “crash” week for the drama club as their opening night for their play is Friday night. Tomorrow night they’re practicing until 8PM so she’s going to be wiped out still.

So that’s where we’re at. I’m hoping tomorrow is “the day” … but if two more days guarantees me that we don’t have to come back in because it was too soon, then I’ll wait. I’ve not got cabin fever just yet ;). Olivia and I are just craving home – the food, the comforts, our beds, our Maddie & Daddy.

I’ll post again tomorrow to let you know what’s up!

March 31 – still here

Olivia drained a lot yesterday so it looks like we may be here for one more day. BUT she’s doing awesome otherwise.

She’s making the laps around the floor – walking the entire floor. We did THREE laps today already before spending a good half hour in the playroom. She uses the toy grocery cart to store her chest tube chamber and away she goes!

Olivia is insistent that she will be able to take home the chest tube. She’s not looking forward to having it removed.

There’s still a slim possibility that we’ll be discharged this afternoon but it’s more likely than not we’ll be here another night.

Update: we’ve drained 90cc since 10:30am (when we walked around). So it’s 99% likely we’ll be here one more night.

Update for March 30

It’s been a GREAT day. And you know what? Tomorrow might even be BETTER because there’s talk that … WE.MIGHT.BE.COMING.HOME…TOMORROW!!!

Dr. Mello came in to find Maddie & Olivia in bed together. Maddie was playing with playdoh and Olivia was drawing with markers. Kind of looked like this:

but with markers and playdoh. Note: this was taken yesterday

Dr. Mello is VERY pleased with Olivia’s progress. Said if he weren’t so conservative we’d be heading home today! (insert a fainting smile right here ;)). But he anticipates we’ll be out of here either tomorrow or Tuesday at the latest!!!

Olivia and I had a good night. I got her to finally sleep around 9:30PM. She woke up around 4AM and after peeing and drinking more she watched Sleeping Beauty twice while I “snored” according to her ;). She ate mostly fruit for breakfast and then ate half a grilled cheese sandwich for lunch. Progress…

We went to the playroom after she walked about half the floor. She’s having a great day. Took a nap while Arnie watched the UCONN game. Now is watching Garfield with Maddie and just hanging out.

So we’re almost done. ALMOST. And I cannot wait to bring my baby girl home from the hospital for the final time!!!