I am a 35 year old girl, I hope I can learn how steemit works, before having my baby I used to go out on routes, I also loved quad bikes !! I was super active and I also liked my job, when I had my baby my intention was to be with him until he was 6 months old and then leave him to my mother while I worked, but something happened that was going to change my life and I was not going to be able to do what I had planned, here my story begins ...

On June 27, 2019 my beautiful baby was born, everything was perfect ... 3 days after delivery and we were discharged, he was born with low weight and a week later they told us to take him to the hospital to see when he was taking ... The result is that that day arrived and I went to have him weighed, he had not gained anything and I did not stop breastfeeding him ... but another doctor came up to all this and they told me that my baby had to enter because they did not see a normal head They had to look at it, my life collapsed at one point many questions I asked myself, why my baby? Why do I have to go through this?
But here I do not finish everything from the hospital where we were they sent us to another neonatal ... that a week after we had been admitted there doing tests and they did not find what was happening ... they transferred us urgently in an ambulance to the two that scared me all over the place and a lot of cables !!! What a greater fear I had, I did not know what was happening yet ... but a very friendly doctor explained to me that it was only by protocol everything that they were putting on her right now in case something happened on the way, there it left me a little less terrified .... Finally after a while ... we got to the new hospital where we were going to be admitted, there they put a monitor on him looking at the heart, respiration, and pulse ... and they began to tell me a number of tests that they were going to do to him. my baby .. I was just scared, my baby, and I was a new mom on top .. they told me I had sagittal craniosentosis and that when I had a suitable weight they would operate on it .. how scared I was in tears I couldn't stop ... I was very scared ... my baby, my child, tests of all ears, sight, weight, CT scan, ultrasound, X-ray etc ... it was all crazy but I did not move on his side or to eat but Vanesa already told me you have to take care of yourself you are going to be a month or more depends ... they left me a place to eat Rest if I wanted, although I only did it in my baby's room next to him he slept, also a place where there were showers, which is where he rested for 10 minutes but immediately ran out again for my baby to the room, I did not want him to be alone He already had enough ... they also did genetic tests to see the reason for his cranosenthosis and there is where they told me that he had 13% autism but that is why I did not worry since I also had that percentage to raise awareness more with the rare syndrome CUL4B .. there are only 100 people in the world diagnosed with this syndrome .... fear?
I was just afraid I did not know what I was going to face nor do I still know it well today ... but it is a difficult fight that I do know ... because they told me that very little was known but the only thing that They told me is that my baby would never speak the world collapsed on me again ... and also when they did one of the ultrasounds to see his head they also saw that he had had an iptus and that a part of his brain would never work ...... I was so scared !!!! I just had my baby and I thought that because of us !! Today my baby is two years old and we have almost the entire hospital that visits us many times we do therapies and I am his caregiver, I have to stop working for him, he has a delay of a year and something right now ... I always do him as a teacher I read him we play we do activities we go out for walks which he loves, we were in the spring doing therapy on horseback he loved it together with him I learn many things I also to be very patient I had never been but with him I don't know it's different I can be the most patient in the whole world !!!! It's like I'm an expert hahaha
Well, I will explain more things to you in another post, thank you very much for reading me and I hope I can have a lot of support from all of you. A very strong kiss and greetings!

Soy una chica de 35 años espero poder aprender cómo funciona steemit , antes de tener a mi bebé solia salir a rutas ,también con quad me encantaba !! Era super activa y tambien me gustaba mi trabajo, cuando tuve a mi bebe mi intención era estar con el hasta los 6 meses y luego dejárselo a mi madre mientras yo trabajara , pero ocurrió algo que iba a cambiar mi vida y no iba a poder hacer lo que tenia planeado , aqui empieza mi historia...

El día 27 de junio de 2019 nació mi hermoso bebé todo iba perfecto... pasaron 3 días del parto y nos dieron el alta nació con bajo peso y a la semana nos dijeron que lo llevara al hospital para ver cuando iba cogiendo... el resultado es que llego ese día y fui a que lo pesarán, no había engordado nada y yo no paraba de darle pecho... pero a todo esto subió otro doctor y me dijeron que mi bebé tenía que ingresar porque no le veían una cabeza normal ,tenían que mirarlo, mi vida se desplomó en un momento muchas preguntas me hacía yo misma ¿porque a mi bebé? ¿Porque yo tengo que pasar por esto?
Pero aquí no acabo todo del hospital donde estábamos nos mandaron a otro de Neonatos... eso a la semana de haber estado ingresados allí haciendo pruebas y que no daban con el que ocurría....nos trasladaron con urgencia en una ambulancia a los dos que miedo me lo entuvaron por todos sitios y un montón de cables!!! Que miedo más grande tenía , no sabia que estaba pasando todavía...pero una doctora muy amable me explicó que solo era por protocolo todo lo que le estaban poniendo ahora mismo por si pasara algo en el camino , hay me dejo un poco menos aterrorizada....Porfin después de un buen rato... lleguemos al nuevo hospital donde íbamos a estar ingresados allí le pusieron un monitor mirando el corazón respiración el pulso ... y me empezaron a contar una cantidad de pruebas que le iban hacer a mi bebé.. yo solo tenía miedo ,mi bebé, y yo mami primeriza encima..me dijeron que tenía craneosentosis sagital y que cuando tuviera un peso adecuado lo operarian .. que miedo 😨😱 me inche a llorar no podía parar...tenía mucho miedo... mi bebé, mi niño, pruebas de todas oídos, vista, peso, tac, ecografias, radiografías etc... era todo una locura pero yo no me movía de su lado ni para comer pero ya me dijeron Vanesa tienes que cuidar de ti vais a estar un mes o más depende... me dejaron un sitio donde comer descansar si quería aunque yo solo lo hacía en la habitación de mi bebé junto a él dormía, también un lugar donde habían duchas que hay es donde descansaba por 10 minutos pero enseguida salía corriendo otra vez por mi bebé a la habitación no quería que estuviera solo suficiente tenía ya el...también le hicieron pruebas de genética para ver el porqué de su craneosentosis y hay es donde me dijeron que tenía un 13% de autismo pero que por eso no me preocupara ya que yo también tenía esa porcentaje que me concienciara más con el syndrome raro CUL4B.. solo hay 100 personas en el mundo diagnosticadas con ese syndrome .... miedo ? No más que miedo tenía yo no sabía a qué me iba a enfrentar ni lo se todabia bien a día de hoy.. pero es una lucha difícil eso si que lo sé... pues me dijeron que se sabía muy poco pero lo único que me dijeron es que mi bebé nunca hablaría se me derrumbó el mundo encima otra vez.... y también cuando le hicieron una de las ecografias para ver su cabeza también vieron que había tenido un iptus y que una parte de su cerebro no funcionaria nunca......😱😱😨😭😭 tenía tanto miedo!!!! Solo habrazada y habrazada a mi bebé y pensaba que porque a nosotros!! A día de hoy mi bebé ya tiene dos años y tenemos a casi todo el hospital que nos visita muchas veces hacemos terapias y yo soy su cuidadora tube que dejar de trabajar por el , tiene un atraso de un año y algo ahora mismo ... siempre le ago de profesora le leeo jugamos hacemos actividades salimos a pasear que le encanta, estuvimos en la primavera haciendo terapia a caballo le encantó 😊 junto a él aprendo muchas cosas yo también a ser muy paciente yo nunca lo había sido pero con el no se es diferente puedo ser la más paciente del mundo entero !!!! Es como si fuera una experta jejejje
Bueno ya os iré explicando en otro post más cosas muchas gracias por leerme 😊 y espero poder tener mucho apoyo de todos vosotros. Un beso muy fuerte y saludos !!!