Colleen from Dr. Boyle’s office called me a little while ago. She said they have a letter from Zoe’s donor family and she wanted to know if they could forward to us. I all but jumped through the phone! We’ve been waiting for this letter. She said the time frame for every donor family is different and ours decided it was time.  I’m anxiously awaiting this letter. I’ve wondered since the day we got the heart who it came from. I’m finally going to getmy opportunity to thank this amazingly generous family who has gave me back my daughter.

I just wanted to share this with all of you who visit the site.

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You have all been so wonderful sending positive thoughts and prayers to not just Zoe, but her 2 transplant friends as well. As you know Zoe’s friend Aly passed away last summer while waiting for her 2nd heart in less than a year. I know I’ve mentioned her other friend Melanie who received a heart in October 2008. Mel had some difficulty last year and fought off rejection but had to have a pacemaker put in. She then went back on the transplant list and got her 2nd new heart early this winter, November I think. Well Mel is in severe rejection again. She’s back in the ICU on a vent and is receiving plasmapheresis and dialysis. Please forgive me if this information is entirely correct. I’m getting all the information 3rd hand. I’m getting it from Zoe’s dad who isgetting it via Aly’s mom who I believe is getting it from Mel’s mom. I haven’t given Zoe all the scary details, naturally. What I have told her is that Mel is having some trouble with her new heart and is back in the hospital.

I’d appreciate any prayers/positive thoughts you can spare for Melanie and her family. I can only imagine what Mel and her family are feeling right now.

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I quickly just read an old post from the archives from November and I have something to add to my last post.

Children read this site so I try to keep clean when I’m mad about something. Those who know me understand how hard that is sometimes. This isn’t the first time someone hasn’t liked what they’ve read here. I have something I need to say to those people and the people like them. Build a bridge and get over it! You don’t get to sit behind your computer and judge me. I will not apologize to you or anyone else for who I am and what I say. Who I am helped make my daughter who she is and who she is helped her survive. Unless you’ve been though what we’ve been through, you’re opinion counts for squat. You can take that opinion and I think you know where you can put it. If you don’t, ask. I’m happy to point you in the right direction. I very nearly lost my child. I spent more than a month knowing she was scared and watching her suffer and slip away from me and there was NOTHING I could do about it. I don’t wish that on anyone. If your children are healthy, hug them and give thanks to whom ever it is you give thanks to, but don’t come here and pass judgement.

Everyday I look at Zoe and I’m thankful for her. I kiss her and tell her I love her every chance I get and she never gets tired of it. So instead of getting your panties in a bunch about something you read here (no one makes you visit the site by the way), re-direct your energy. Stop being angry about stuff you can’t control or change and be happy for what you have even if it isn’t everything you hoped it would be.

To Zoe’s faithful supporters: Thank you (again) for letting me vent. Zoe & I are glad you still care.

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I do have a short update from Zoe’s appointment with Dr. Boyle last week, but first I have an issue I need to address regarding zoesheart.com.

It has been brought to my attention recently that a portion of my last post offended someone. This individual was appalled at the idea of Gabe being left in charge of 2 little girls on an airplane. The little winky face at the end of the sentence was obviously missed and my sense of humor misinterpreted. Rest assured concerned citizen, Gabe will not be left in charge of ANYONE (including himself) on the flight to Disney. Steps will be taken to ensure that ALL minors on the trip will be monitored continuously by one or both of the adults traveling with them. I hope this puts all minds at ease.

That said, I feel I need to add something in regards to the content found on this web site. As most of you know, this site was started by my sister as a method of letting me update everyone at once on Zoe’s condition while in the hospital. As she continues to improve I update less and less. This was my goal all along as no news is good news where Zoe and her heart are concerned. The opinions expressed on this site are solely my opinions. They do not reflect those of anyone else nor are my opinions meant to be taken as fact. They are what they and nothing more. If something I say here offends anyone or anyone takes issue with anything here please contact me via this site. All comments are approved by Nikki or myself before being put on the site. If you have a more direct method of getting in touch with me, I encourage you to do so.

Now the quick update. Zoe is now 4′1″ and weighs 56lbs. That’s impressive considering at transplant she weighed 34lbs. Dr. Boyle gave no travel or ride restrictions for Disney. My little dare-devil couldn’t be happier. Her next biopsy is in April and she’s due to have her Prograf levels checked before then.

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Tiny Dancer

Tiny Dancer

Dance classes have resumed. It’s been 2 years since Zoe has been well enough to dance.  She’s back in ballet (which is a contact sport for those who aren’t dance moms) on Saturday mornings and she’s added tap this time around which she does Monday evenings. She will be dancing in the big recital in June and she’s very excited. She still has her costume from 2007.

All is going well. She has an appointment to see Dr. Boyle next Thursday for her follow-up and her next biopsy will be in April.  She’s decided that when we go to the Clinic next week we’re going to take some stuffed animals with us to donate to the hospital. She has so many and knows how important they were to her in the hospital. She wants to make some other kids happy too.

School is going well for her but I think I need to invest in a tutor. She missed so much last year and even though she worked so hard to get to the 2nd grade it’s beginning to catch up to her. She’s starting to struggle and it’s frustrating for her.

We’ve planned a trip to Disney World in April during spring break. Myself, Gabe, Zoe, a family friend and his daughter are all going. We’re staying at the Nickelodeon Family Suites in Orlando. Our friend  has never flown (and is terrified) and I get air sick if I’m awake so this should be an interesting trip. Gabe may be in charge of the girls on the plane.  ;-)

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It’s been a long year. We’ve had reasons for celebration and reasons for tears but amidst it all we’ve come a long way. Zoe had her 1 year biposy on December 20th. They went in through the neck, as usual, as well as through her groin. The recovery took a little longer. She had to keep the leg they went through straight & flat for 6 hours post-procedure. Her cardiac output is good, all her pressure are good and the results were double 0’s. Those are perfect results if you’re curious.

Zoe goes back to see Dr. Boyle in February and she has a biopsy in April.

I hope everyone had a safe and happy holiday.

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One year ago today we celebrated Zoe finally getting a new heart. She came out of surgery rosy cheeked and red lipped. It’s been a roller coaster year.  Double hip infection, seizures, CMV, and not to mention the hospital stays. She’s grown taller and wider. She had to have a whole new wardrobe this year because she hasn’t needed new clothes in 2 years. Her hair is longer and she’s a 2nd grader now.

We’ve been blessed and we know it. Amidst all out happiness I can’t help but think of the other family out there somewhere with an anniversary of their own. One year ago today a family lost a child. I don’t know who & I don’t know where yet but I’m eternally grateful for the gift they’ve given me. I can’t thank them enough.

I also can’t thank enough our faithful Zoe’s Heart  followers. You are the reason this site exists still today.

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Today is a special day for us. I’m sure my sister will post her own thoughts on today when she gets the chance but I’m going to jump in here and give you a peek at how I’ve felt over this last year.

As many of you already know Zoe got her new heart last year. One year ago today as a matter of fact. For me, this day trumps all other national holidays. Christmas, New Year’s and even Thanksgiving no longer hold a candle to December 2nd.

My nephew lovingly dubbed it “Heart Day” in a text message last year to my sister. He sent her a text on his cell phone a month or two after the transplant that simply read, “Happy Heart Day.” As this year has passed, I’ve tried to mark each Heart Day with a silent prayer and a thank you to the family who gave so selflessly. Without their gift… well, we don’t think about that. What I do think about is how blessed we are, how much we love this little girl and how complete she makes our family.

Chrissy and I used to joke when our girls were smaller about “the future” and what kinds of trouble the two of them would get into. I can’t speak for Chrissy but when I think about our girls now, I am excited to see the trouble and adventures the two of them may have together. They are as close as cousins can be; I’d dare go so far to suggest that they are as close as sisters.

I don’t think about what this year could have been like if a heart hadn’t arrived in time. Instead I think about how funny it is to watch Zoe come to my house and care for the cows with my son, how in a two hour span she can go through every “dressy” piece of clothing my daughter owns while playing, how sweet and kind she is with Noah, how her and Ethan seem to be cut from the same stubborn mold, and I even laugh a bit when she gets angry with me for telling her No or taking on a diva attitude when I lay down the law while she visits. Zoe may not think it’s funny at the time  but to me, it is. It’s a part of her growing up that I couldn’t wait to see.

My sister and Zoe have seen the passing of a transplant sister and another one back in the hospital as she is placed back on the transplant list. Watching Zoe reach this milestone has been nothing short of a miracle. We know that and we don’t deny it.

Last year when the call came from my sister that a heart had arrived, I was shaking and I was in tears. I skype called a group of moms I’d been chatting with and IM’d a dozen more people and cried to them that I was on my way to the hospital because a heart had finally come. They must have thought I was nuts and maybe I was a little bit at that moment but it was a day that we’d wanted for so long.

Every day since then has been a miracle. Every day forward will continue to be a miracle.

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Flu season is upon us. I’m seeing schools closed for illness & donations are down at the blood bank because everyone is sick. Frankly I’m a little nervous. Zoe has gotten her seasonal flu vaccine but not her H1N1 because no one on the planet has any (that may be a slight exaggeration but you all get my drift). Gabe & I haven’t gotten either because, again, no one on the planet has any. Hopefully we’ll hold out until early November.

Trick or Treat is tomorrow and Zoe is especially excited because my boyfriend & his daughter will be joining us. I need to thank someone for Zoe’s costume & I’m soooooo sorry but I’m not sure who. If you read this, and you are who I’m thanking then please step up and let me know! Last year I was emailed a gift certificate for Zoe through http://www.princesstimetoys.com/ . I hadn’t used it and money was tight this Halloween so I’m glad I saved it. Zoe will be Glitter Kitty. The gift certificate covered the costume, petticoat, and shipping. I ordered it Thursday & received it Monday. Talk about fast. It’s hanging in the closet waiting for tomorrow night. Every night before bed Zoe asks to look at her Glitter Kitty costume. lol I’ll be sure to post pictures of her in her costume soon. So thanks so much to Princess Time Toys for the gift certificate. Zoe & I are most grateful!

glitter kitty

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