Frida Sofia

04/20/2018 - 04/21/2108 Three tough days followed by a not so eventful weekend. Thankfully all that has been done these past few days has helped a lot. My stats have stayed more constant. The procedures have helped a lot. My chest is still open if you're wondering. They plan to close it soon, but they want to be sure that they don't have to readjust the bands. I have been very lucky to have AMAZING nurses that take care of me. Every single one of them has done their best to take care of me.  Unos días difíciles seguidos por un fin de semana bien tranquilo. Afortunadamente, todo lo que se ha hecho estos últimos días ha ayudado mucho. Los procedimientos han ayudado mucho porque mis estadísticas se han mantenido constantes. Mi pechito aún está abierto. Planean cerrarlo pronto, pero quieren asegurarse de que no tengan que reajustar las bandas. He sido muy afortunado de tener enfermeras INCREÍBLES que me cuidan. Todos y cada una de ellas hacen todo lo posible para cuidarm

  Heart Catheterization Balloon Atrial Septostomy These past few days have been non-stop. Three days in a row of procedures. Mommy and daddy keep telling me every moment of each day to be strong and they love me very much. They wait endless hours by my side and when they cant be they wait in the waiting area. Today a nurse shared a little secret with me. She told me that she can tell from all the running around and sleepless nights that they love me more than I could ever imagine. Estos últimos días han sido sin parar; tres días seguidos de procedimientos. Mami y papá siguen diciéndome cada momento de cada día que sea fuerte y me quieren mucho. Están  a mi lado cada momento que puedan y cuando no pueden esperan en el área de espera. Hoy una enfermera compartió un pequeño secreto conmigo. Ella me dijo que me aman más de lo que yo me podría imaginar.

04/19/2018 Yesterday was my first surgery. Everything was expected to go well. The surgery I had was the pulmonary artery banding. This procedure was done to help reduce the blood flow into my lungs. My doctor did a great job yesterday, but they were a little too tight for my liking. Today I needed to go back to the operating room to loosen them just a tad. It was planned to get a heart catheterization today, but my doctors decided to wait until tomorrow. My chest is also open, but don't worry there is tape over is so you cannot see inside. They left my chest open just in case if they needed to readjust the bands it would be easier to do so in my room rather than going to the OR again. Ayer fue mi primera cirugía. Se esperaba que todo saliera bien y avanzaran a la cirugía de Norwood en unos días. La cirugía que tuve fue la formación de bandas en la arteria pulmonar. Este procedimiento se realizó para ayudar a reducir el flujo de sangre a mis pulmones. Mi doctor hizo u

04/18/2018 Today I have a pretty big surgery. It was supposed to be early in the morning, but it go delayed to the afternoon. I'm so glad it did because mommy was able to hold me. She hasn't held me since late Sunday night when I went to the NICU. I loved every second of it, I just wish they would take the breathing tube off and I could stay longer in her arms. The surgery went well, they hope it helps the blood circulate in my body and my heart is not over worked.  Hoy tengo una cirugía un poco grande. Esta programada temprano por la mañana, pero la movieron para la tarde. Estoy tan contenta que cambiaron el horario porque mamá pudo abrazarme. Ella no ha tenido la oportunidad de abrazarme desde el domingo en la noche que me llevaron al NICU. Me encantó cada segundo, solo desearía que quitaran el tubo de respiración y que me dejaran mas tiempo en sus brazos. La cirugía salió bien, esperan que ayude a que la sangre circule mejor en mi cuerpo sin que mi corazón este tra

04/17/2018 Today I was moved from the NICU  (newborn intensive care unit) to the PICU (pediatric intensive care unit). I get to have my own room. I have new nurses and my own television to watch movies. My favorite channel is where I hear classical music. I also have some new doctors who have meetings every morning and every evening. They talk a lot and I don't understand them, but mommy and dad say they are going to help me so I can go home soon.  Hoy me trasladaron de la UCIN (unidad de cuidados intensivos para recién nacidos) a la UCIP (unidad de cuidados intensivos pediátricos). Tengo mi propia habitación. También tengo nuevas enfermeras y mi propia televisión para ver películas. Mi canal favorito es donde escucho música clásica. También tengo algunos doctores nuevos que tienen reuniones todas las mañanas y todas las noches en mi cuarto. Hablan mucho y yo no los entiendo, pero mamá y papá dicen que me van a ayudar para que pronto vayamos a casa.

04/17/2018 Today my parents met with so many people! They met with nurses, cardiologist, surgeons, a social worker, and an anesthesiologist. Everything they kept talking about was really confusing. All I could understand was that the most important part of my heart (4th chamber) is significantly smaller than it needs to be. The 4th chamber is what pumps blood to your whole body. There are a small openings that cannot close, but typically do when you are between 2 and 3 days old. I am receiving medication to maintain them open and blood keeps flowing to my body. Below is a video explaining more in detail. https://youtu.be/3MVVDSpUZ3g ¡Hoy mis padres se reunieron con mucha gente! con enfermeras, cardiólogos, cirujanos, un trabajador social y un anestesiólogo. Todo lo que siguieron hablando fue realmente confuso. Todo lo que pude entender fue que la parte más importante de mi corazón (cuarta cámara) es significativamente más pequeña de lo que necesita ser. La cuarta cámara

4/16/2018 I am a bit uncomfortable, but mommy and daddy say that everything is going to be okay. I honestly do not like the breathing tubes. I want them to take them out. I keep showing my nurses and doctors I can breath on my own. I constantly fight with the breathing machine. It is just a precaution because on of the medications they are giving me has a side effect where I could stop breathing. I know that sounds scary! The medication keeps a valve open as if I was still in my mommy's belly. I need that valve open to keep my blood circulating. It is really late and we will not know my diagnosis until morning when mom and dad talk to the cardiologist and surgeon. I have hope all will be ok because all I want it to go home and be in my loving parents arms. One of the babies in the NICU mentioned the zoo was really close and there are many animals. I'm sure mom and dad will take me one day. Estoy un poco incómoda, pero mamá y papá dicen que todo va a estar bien. Honest

04/16/2018 I am only two days old and I thought I was going home with mommy and daddy today, but God has other plans for me. I was quickly prepped to go downtown in my first helicopter ride downtown Houston to the Children's Memorial Hermann. It was really hard on everyone because mom and dad did not know exactly what was wrong. They only knew that I had heart problems. All mom and dad wanted to do at this point was get discharged from the hospital to be with me downtown. I arrived safely and was taken to the NICU. I also did not know what was happening. All I knew was there were other babies around me. Solo tengo dos días de nacida y pensé que iría a casa con mamá y papá hoy, pero Dios tiene otros planes para mí. Me prepararon para ir al centro de la ciudad en mi primer viaje en helicóptero al centro de Houston para ir al Children's Memorial Hermann. Fue realmente difícil para todos porque mamá y papá no sabían exactamente qué estaba mal. Solo sabían que tenía proble

04/15/2018 Today was a bit tough for mommy, daddy, and I. It is the first night that we did not sleep together. My night nurse noticed that my breathing was a bit off compared to the previous day. Thank goodness she noticed and they decided to send me to the NICU for observation the whole night. Mommy came every 3 hours to feed me. If all went well we would go home in the afternoon.  In the morning my amazing doctor Aron ran a few tests and an echocardiogram to diagnose if there was a problem. He came to the conclusion that I should be transported downtown to the medical center. I really made mommy, daddy, and all those who love me very much.    Hoy fue un poco difícil para mamá, papá y yo. Es la primera noche que no dormimos juntos. Mi enfermera nocturna notó que mi respiración estaba un poco diferente en comparación con el día anterior. Gracias a Dios, ella lo notó y decidieron llevarme a la NICU para observarme toda la noche. Mami y papa vino cada 3 horas para visitarme y q

04/15/2018 I can't wait to go home! Mom and dad are ready to start a new chapter with me. Dad wants to watch movies together. They both want to watch me grow and see who I look like more. So far I have chunky cheeks, thunder thighs, and a lot of hair. Everyone keeps saying I'm going to be really tall.  ¡ no puedo esperar para ir a casa! Mamá y papá están listos para empezar un nuevo capítulo conmigo. Papá quiere ver películas juntos. Ambos quieren verme crecer y ver a quién parezco más. Hasta ahora tengo mejillas gruesas, muslos de trueno y mucho pelo. Todo el mundo sigue diciendo que voy a ser muy alta. 

04/14/2018 I discovered something new today and it is my thumb. Mommy really hopes it doesn't become a habit as well as the pacifier. She allows me to have both for now because she thinks I look absolutely precious.  Descubrí algo nuevo hoy y es mi dedito. Mamá realmente espera que no se convierta en una costumbre igual como el chupete. Ella me deja ser porque cree que me veo absolutamente preciosa.

04/14/2018 Daddy's first diaper change wasn't bad at all. He did an amazing job! I personally don't like cold wipes, it is honestly the only time I get fussy. All I do is sleep and mommy has to wake me up to eat. If it was up to me I would sleep as much as I can; I wonder who I got that from (mommy or daddy). Sometimes I want to cry, but then I realize how much effort I need to do so I just stop and continue to sleep. I also sleep better not being bundled up in a swaddle blanket.  El primer cambio de pañal de papá no fue malo en absoluto. Lo hizo muy bien!  Personalmente, no me gustan las toallitas frías, sinceramente, es la única vez que empiezo a llorar. Todo lo que hago es dormir y mamá tiene que despertarme para comer. Si dependiera de mí, dormiría mucho mas tiempo; me pregunto de quién saqué eso (mami o papi). A veces quiero llorar, pero luego me doy cuenta de cuánto esfuerzo necesito hacer, así que me detengo y continúo durmiendo. También duermo mejor si no

4/14/18 Today is the day I finally get to meet mom and dad. I have waited 40 weeks and one day to finally meet them. I'm sure they were anxious too. Daddy kept telling me to wait until the weekend. Since I'm such a daddy's girl I listened and was born on a Saturday weighing a little over 8 lbs and 20 inches long. I am a big baby! As you can see I have a full head of hair; the nurses and doctor was shocked how much hair I have. I'm ready for Mommy to braid my hair once it gets longer. Hoy es el dia que finalmente voy a conocer a mi mama y papa. Me espere 40 semanas y un dia para por fin conocerlos. Tambien se morian de ganas para conocerme. Papa me decia todo los dias que me esperara hasta el fin de semana. Como lo amo tanto naci un sabado y pese 8 lbs y medi 20 pulgadas. ¡ Soy una bebe grande! La doctora y las enfermeras estaban sopredidas por nacer con tanto pelo. Estoy lista para que mami me haga trenzas cuando este mas largo.