TOF Warrior Princess

01/12/2022

On this day in 1944 at Johns Hopkins Hospital, Dr. Alfred Blalock, Dr. Helen Taussig, and Surgical Technician Vivien Thomas performed the first surgery to treat tetralogy of Fallot, a that robs the blood of oxygen & is often signaled by a bluish skin tone. Groundbreaking at its time, the procedure came to be known as the Blalock-Thomas-Taussig Shunt. ❤️

08/09/2022

Well it’s been quite a while. We have had a very busy year. Zelda has been playing sports and started Pre-K! She’s growing so fast and is as bubbly as ever.

She had her tenth heart cath on Tuesday, September 6th. What the cath showed was that her surgically altered PAs are holding up strong and staying open. Her valve is not narrowed or leaking and the conduit is holding up beautifully. Her heart looks the best it’s ever looked! That was the highlight of the day. Dr Salazar did an amazing job. “Anatomically she looks better than she ever has before.” Was said in regards to her heart. Thanks be to God.

One finding was that her pulmonary pressures were significantly elevated and she has been diagnosed once again with pulmonary hypertension. They tested her on nitrous oxide as well as oxygen during the cath and her response was good; pressures never reached “normal” levels but they did improve in response to the meds. So the game plan at this moment is to try to manage the pulmonary hypertension for the long term. She’s started sildenafil again every 8 hours and we are monitoring her closely. I am hoping and praying that the sildenafil works how they want it to so she doesn’t have to be back on continuous flow oxygen.

Dr Brown was very impressed with how her anatomy looks. This is why the hypertension is so concerning because it is not a direct result from her narrowed arteries. He did say, “We’ve always talked about giving Zelda every chance we can and I think with all the procedures and all the surgeries she’s been through I think she is set up the best she’s ever been and now we need to just make her quality of life and everything as good as we possibly can” So we are taking things day by day and making sure our babe is happy and as healthy as can be! She’s been cleared to participate in activities that she can tolerate and she loves her extracurriculars. 🥰 I know God has big plans for this little punkin pie and she is going to defy the odds! 🖤

Please keep her in your prayers and send us all the positive vibes. We are so super grateful for all of the support and love.

22/04/2022

🚨 Zelda Update 🚨

Zelda had her cardiology appointment today and it went GREAT! There is minimal to no calcification of her conduit and her porcine valve is functioning beautifully. She is scheduled for her tenth heart catheterization on May 11. We are so hopeful that they will be able to see some growth in her outer PAs that go into the lungs. 🙏🏼

Please keep her in your thoughts and prayers and send us all the positive vibes, love and light. As always we are so appreciative and grateful for y’all’s prayers and love. 🖤

💔💪🏼🌺

19/01/2022

🚨Big news for Zeldy!!🚨

✨She has been accepted to Make-A-Wish. ✨

Unfortunately due to covid precautions and vaccination requirements her original wish of Disney is looking like it may not be possible 😞.

However she also has been wanting:

1. A fluffy cat 🐈
2. A shopping spree 💰
3. An iPad 📱
4. A backyard fort 🎠🗼🏰

So there are definitely other avenues we will be exploring until we hear the final verdict on Disney.

We are so excited this little wild child will get to feel so special as she is so deserving. 🖤 Her health has been amazing since her last surgery and we are almost one year out with NO procedures. We go back in April to most likely schedule her tenth heart cath.

As always, she loves getting her “mails” so if anyone wants to send her little Valentine cards, CHD Awareness Cards, (basically anything heart themed) or postcards she would be on cloud nine. ⛅️9️⃣ {No pressure for anything extra, just some mail addressed to her, little stinker.}

Her mailing address is:

Zelda Regalado
PO BOX 7
Old Ocean, TX 77463

We are so grateful for you all being involved in this little lamb’s life and thank you so much for all the constant thoughts, prayers, positive vibes, love & light.



💔💪🏼🌺

30/11/2021

22/10/2021

Zelda had her cardiology appointment this morning and it was definitely one to remember!!

I’ll start by saying she is such a little boss babe sitting through all her tests like a champ and being her bubbly little self. 🙌🏼

Okay so down to the nitty gritty… Dr. Brown said that as far as they can see there is no narrowing, the leaky valve is still minimal and pressures are the same as they were at her post-op appointment which are all GREAT signs. (She has never NOT had narrowing issues after a surgery so this is major.)He said she looks so great and that he is very pleased with her activity level. He wants to see her again in 6 months and go from there. He is so comfortable with her stability that he doesn’t feel like a cath is necessary at the moment. 😱 We will just continue to monitor her at home until her next clinic appointment. This is huge. We are so grateful.

We are in shock still a little bit because this has been the most positive cardiology appointment we have had to date. We could not be more blessed. 🖤

Also, Zelda received her Make-A-Wish certificate so she will be making her wish in the very near future. This little warrior is so deserving; she has been through so much and still has the most positive outlook on life. 🤩

Please, as always, send Zeldy all the thoughts, prayers, positive vibes, love and light. They are so appreciated.🖤🫀



💔💪🏼🌺

03/10/2021

Today is Zelda’s fourth heartiversary. 🖤 It’s such a monumental day because today is the day her little 7 pound body absolutely ROCKED her first open heart surgery and claimed victory on her very first battle. This little turd is so strong and I am so grateful we are lucky enough to celebrate these milestones with her! Her journey isn’t over but she is such a determined little fighter. Happy heartiversary to our little TOF Warrior Princess. 🥳

💔💪🏼🌺

29/09/2021

Well I know it’s been a long while since we have posted and today is World Heart Day, so I figured I would give a little update on Miss Zeldy Lou. ❤️

Zelda turned FOUR on September 19th and enjoyed very much being the center of attention for a day. 🎂🥳 She has been so full of energy and her tiredness is more infrequent than ever which is such a good sign. She is constantly moving and exploring. She is fulfilling all of her little sister duties by being a complete pain to her big sisters and is starting to accept her role as a big sister begrudgingly. 😹 (No, she really is starting to like having a little sister and friend.) She has had no issues since coming off of continuous oxygen and has needed 🚫NO O2 assistance🚫 since March.‼️ It’s incredible. She is pink, satting beautifully and has been doing great. This child has defied all the odds and continues to do so. We are so so thankful for all of the positives. We weren’t sure at first that we would make it this far but thanks to the absolutely amazing cardiology team, nurses, PICU team and staff at Children’s Memorial Hermann this kid is thriving. 🙌🏼

Our follow up cardiology appointment has been rescheduled to October 22nd so we will have a more concrete physiological/ plan of care update after that. We are anticipating a heart cath sometime toward the end of the year and then hopefully minimal intervention for maintenance for a while. 🤞🏼🤞🏼

Will definitely post an update following her appointment! Until then, as always, please keep her in your thoughts and prayers and send us all the good vibes, love and light. 🖤 We are so grateful for y’all!

29/09/2021

06/04/2021

There’s our Dr. Salazar, Zelda’s surgeon. 🤩 This man is brilliant! 🫀👨🏻‍⚕️

28/03/2021

Thinking of the Harlow family tonight. 💔 Prayers for peace for her mom, dad and brothers. ❤️

RIP Jillian