Rachel’s Story

Site created on September 7, 2023

Welcome to our CaringBridge website. We are using this site to keep family and friends updated in one place. As many of you know Rachel was born with several heart defects, including Pulmonary Atresia, Dextrocardia, and some abnormalities to the tricuspid valve and SVT (Supra Ventricular Tachycardia). She's already had several surgeries, before we adopted her. This girl is a true warrior. Even though her cardiologists keep saying she has a very serious condition, she has always led a very normal life, she has never been able to do any competitive sports, but in the last few years doctors kept lifting restriction, and she has had a very full teen life, including learning how to drive. When Rachel turned fourteen, doctors started to see some significant changes in her heart function, and started monitoring her more closely, fast forward two years later, and doctors have decided it's time to replace pulmonary valve and fix some other things, we are aware that some areas will be untouched, we are happy to report she will be able to lead a very normal life with what they will do. 



We will be documenting and updating as we approach surgery and post surgery.  We appreciate your support and words of hope and encouragement. 



Newest Update

Journal entry by Bonnie Menoni

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we  boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us. Romans 5:1-5

I know it's been a while, but things have been progressing pretty well around here. Ms. Rachel had her second post-op yesterday, and I am happy to report girl is doing fantastic! 

  • She is weighing 87 lbs!!!! This is HUGE. She is eating and very hungry, energy levels are definitely improving everyday.
  • Medication was reduced, she will no longer require to take diuretics, she will be taking the blood thinner until May 14, she will take baby aspirin basically for life, and the doctor said she could stop taking beta blocker (She's been on it since 2017). She is afraid of SVT returning, but doctor said we could try... so almost medication free!
  • Heart echo function showed she is doing amazing, better than amazing, doctors gave her the green light to do sports, since birth she was on strict no high impact, nothing that would make her heart pump faster... so as a mom, I got very emotional that now this girl basically has no exercise limit... woohoooo!!!
  • Incision is being a bit stubborn, the end part of incision is still oozing and scabbing, so no pool, or sea or lake until completely healed. But her chest bones are all healed up and already whole... in awe of God's design... amazing what our bodies can do.
  • We still have a leak in the tricuspid valve, it is now mild (it was severe at time of surgery), squeeze is better, still not 100% but so much better. and according to echo, looks like size is normalizing. This girl will be able to lead a very normal life, she will always be a cardiac patient, but we trust God has amazing plans for her.
  • we see the doctor again in 6 months, and then yearly visits after that... God is good.

So that's it for now, we had to pull back from some activities, and just focus on healing. Right now Prom 24' is what's happening and it is so very important... 

We love you all and are so grateful for having walked with us through this journey. We are humbled by all the love and support.

The Menoni's
Alex, Bonnie, Rebecca,Rachel & Coco 

____________

 

 En consecuencia, ya que hemos sido justificados mediante la fe, tenemos paz con Dios por medio de nuestro Señor Jesucristo.  También por medio de él, y mediante la fe, tenemos acceso a esta gracia en la cual nos mantenemos firmes. Así que nos regocijamos en la esperanza de alcanzar la gloria de Dios.  Y no solo en esto, sino también en nuestros sufrimientos, porque sabemos que el sufrimiento produce perseverancia;  la perseverancia, entereza de carácter; la entereza de carácter, esperanza.  Y esta esperanza no nos defrauda, porque Dios ha derramado su amor en nuestro corazón por el Espíritu Santo que nos ha dado. Romano 5:1-5

Hace rato que no damos informes de Rachel, pero todo positivo, la verdad que su mejoría ha sido excelente. Ayer fue su segundo post-operatorio, y nos fue super bien.

  • Esta pesando 87 libras!!!! Esto es un gran logro. La verdad que tiene muy buen apetito, y sus niveles de energia estan mejorando. cada día mas.
  • Le redujeron sus medicamentos, ya no mas diureticos, Con anticoagulante hasta el 14 de mayo, tomara aspirina de bebe de por vida, y le quitaron el beta-blocker que lo ha estado tromando desde el 2017 cuando le diagnosticaron SVT.
  • El Echo mostró que el Corazon esta funcionando super bien, super fuerte. Tanto asi que los medicos le quitaron las restriccioned que tenia desde nacimiento de zero actividades de alto impacto, nada que le elevara los latidos del Corazon, asi que como mamá me conmovi mucho ayer, estamos entrando a una nueva etapa... emocionados! 
  • La cicatrizaun no ha querido sanar por completo, aun tiene un area que le hace costra y aun sangra, el medico dice que muy normal, pero mientras ese asi no hay piscinadas, ni lago ni playa. Todos los huesos del pecho ya sanos, todo de nuevo en su sitio, realmente sorprendidos del diseño de Dios, incredible lo que pueden hacer nuestros cuerpos.
  • Aun tiene la válvula tricuspide que le piques, pero ahora mismo es leve, comparado a severo de cuando la operaron, la contraccion del corazón mucho mejor, aun no 100%, pero de acuerdo al echo esta mucho mejor, al igual que el tamaño, parece ser que esta volviendo a su tamaño normal. Rachel va a poder llevar una vida muy normal, siempre estará bajo el cuidado de un cardiologo, pero confiamos que Dios tiene grandes planes para ella.
  • Volvemos al medico en seis meses, después de ahi estaremos en visitas anuales. El Señor es bueno.

Hasta ahora eso es todo, tuvimos que bajar un poco la intensidad de las actividades, y enfocarnos solo en la recuperación, la Rachel quería hacerlo todo, pero poco a poco. Ahora mismo Prom 24' esta tomando prioridad.

Realmente muy agradecidos por todo su apoyo y todo el amor recibido. Gracias por caminar con nosotros en esta jornada. los amamos.

Los Menoni
Alejandro, Bonnie, Rebecca, Rachel y Coco

 

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