Frida Sofia

Life at home has been amazing! These past few months have been a huge blessing. There are so many updates, but ill try to keep them short and positive. Even though Frida is still connected to an oxygen machine she has been improving every day. She is finally in the clear and her heart function is where it should be. Frida Sofia sits for a long period of time and dislikes laying down. This is mostly because I can almost assure you that she has FOMO (fear of missing out). She is in the stage where she doesn't want to miss a thing. We skipped baby food completely and went straight into table foods. Y'all she would not want anything in puree form. I started with veggies and went into fruits. Nothing! she would tighten her lips. One day we tried beans while eating breakfast just to see what she would do. She liked it! A true bean lol We have been trying a little bit of everything. So far she loves soup with rice, potato, and carrots. She still likes beans and homemade tortilla...

I know what you are thinking "Why is he blue?" This is Santa Claus from the Houston Police Department. She LOVED it!! She did not cry, she was not scared, she even had a face of why is he leaving when he had to go. She is even currently in love with the movie "The Star" on Netflix which is about the night Jesus was born. We have a Christmas lover on our hands! She also prefers Christmas tissue paper over her pacifier some days. She was 5 days post op from open heart surgery and looking amazing. Maybe 3rd times the charm and recovers faster. I'm kidding. She really needed this surgery and instantly as she was recovering I could see her color changed. She was pinker! She wasn't as pale or lacy skin when she gets cold. Her breathing and chest contractions looked so much better. She looked so relaxed; you could just tell that her body didn't have to work as hard to pump blood to her body or lungs. It is truly amazing!! Surgery was very long! Maybe abou...

It has been 6 long weeks of antibiotic treatment. During these 6 weeks Frida was on oxygen, some days where better than others. There were some scary days where she would turn purple. Truth is she really needed her next surgery, but with the risk of the bacteria in her blood doctors did not want to risk anything. I know what you are thinking, shes turning purple just do the surgery. The problem with doing any procedure with this bacteria in her blood, it is at risk for her heart to get infected. Truth is shes has had a lot of repairs, iv lines, picc lines, and procedures done. She is a high risk patient; doctors have to cover all their tracks and be as safe as possible. Don't think she is just waiting and waiting even though that's what it seemed for the most part. If need be she would have emergency open heart surgery before her antibiotic treatment was completed. We didn't waste time waiting. Frida Sofia had occupational therapy and physical therapy often throughout t...

Happy Halloween from Frida Kahlo! I just had to, I couldn't help myself. The name fits, the personality fits, and honestly she just looks so cute! Everyone at the hospital were looking forward to this day because of what I had planned. People to this day still ask to see pictures. You are truly loved here my sweet strong heart warrior. I truly hope that when you are a teenager you don't hate me for showing you off so much.

Half our home. Truth is it is time to admit and accept that the hospital is our second home. I am still optimistic that once all 3 surgeries we will only come for check ups and nothing more. We were scheduled to come in Oct. 17 for a catheter. Frida likes to come ahead of schedule or else its God's way of making sure our little one stays alive. We came in the ER this past Sunday and it is time for her next open heart surgery. They scheduled her catheter sooner and said her OHS (open heart surgery) would follow right after.. Frida would need to just recover and then after recovery of OHS we could come home. we would be here 3 weeks or at most a month. Well that's not the plan anymore. These past few days were really really hard. Frida has a bacteria that entered her blood which now she has an infection. Doctors have searched everywhere or tried their best. You will understand in a little. Background info/summary; Frida got 3 blood cultures positive for infection. So that...

It has been a while since I have updated yall. This will be told from my perspective rather that Frida Sofia's. I don't want to jinks it but it has been amazing to finally be home for this long. We do have weekly cardiology and gastroenterologist to check her heart and weight gain, but we are home. Frida gave everyone in Children's Memorial Hermann a big scare with her heart function. They really do not want to take any chances. Updates in July: After Frida was released from Children's Memorial Hermann Eduardo and I were so excited. She went home with 8 medications which wasn't ideal , but she was home. I am so glad she has a g-tube because just imagine trying to give an infant so many medications. The night we got home I started to have really bad back pains. They progressed through out the week. I took pain meds, went to an emergency clinic, and finally the ER. We honestly cant catch a break. I was in the hospital for 4 days. The longest 4 da...

So I am back in PICU... I was home for exactly 2 weeks. My oxygen levels were low and mommy and daddy brought me in just to be sure everything was ok. By the time we got here my numbers went back up, I didn't want to be back. Well lets just say I cried a lot when they took my temperature, blood pressure, echo, etc. I thought I would be able to scare them off but it didn't work. They finally took me from the ER to the 9th floor. I started to see familiar faces. Once I got to PICU everyone was saying my name with joy. Well they said they were happy to see me but not this soon. They all took care of me and treated me like a princess so mommy and daddy could finally get some rest. The next morning was when I realized that a 24 hour observation might turn into more time. I'll be ok as long as I have my blankets, my elephant, my boppy, mommys milk, and my green paci.

Everything was going so well with the way my heart was recovering, the way that I was eating, and boy am I social. The doctors finally discharged me after being in the hospital for about 80 days. Let me tell you about the stroller, who ever invented that was a genius! How awesome is it that mom and dad get to push me and I keep seeing new things. The car is a whole other story. I really don't understand why they stop randomly. They tell me it has to do with lights and how they have to stop when its red. Well I'm glad I am not driving because I don't know my colors yet; how would I know when I need to stop? I usually do stay awake for a while looking out the window the majority of the time. There is so much to see. The sun is way too bright and hot for me, but then again I love to be on the go. Coming home for the first time was amazing. Daddy took me around the whole place telling me what was what. I was secretly looking around for nurses to be sure I was really fr...

It will be a week tomorrow since my big open heart surgery and I'm just flying by my recovery. Mommy cant even keep up! The majority of my previous nurses are shocked as well. They closed up my chest the following day from my big surgery. Then they mostly let me rest for a few days trying to prevent my heart from being overworked. I think I got too use to it that I now growl at the nurses when they try to take vitals or do labs. Yes you read right I growl. I learned that screaming at them doesn't work and this way I don't waste my breath. You'd think they would feel intimidated from my direct eye contact, but all they say is how cute I look. It's a bit frustrating, but I am closer to going home. They have moved me to a less intensive area where others aren't in such critical condition. Today OT came to work on my bottle feeding and I showed her how big of a champ I am. I drank a little more than double than I have ever drank before. Its just a little over ...

04/15/2018 Today is the day everyone has been waiting for. This surgery has been getting postponed for one reason or another. Truth is I wasn't ready and the doctors wanted to fatten me up. I wonder if they have a way to lose some of these cheeks of mine. They are HUGE! People are just going to want to pinch them and say how cute I am. Enough about that. My surgery lasted about 7 hours. There were no complications. The doctors just wanted to take their time and do everything as accurate as possible. As soon as I came back to my room everyone that is a part of my case saw the improvement instantly. My breathing has slowed down significantly to breathe how you breathe. I do not look like i just finished running a marathon, who am I kidding I wouldn't run a marathon at my age but you know what I mean.  I am in a bit of pain, but with medications and the excellent care from the nurses I'm sure ill feel better in no time. Especially with the nurse I had over night, she is t...

04/14/2018 Today I officially turned a month old and everything has been great. I even gained weight. I officially weigh 9 lbs now! Tomorrow they have a big surgery scheduled for me. The doctor is sweet enough to not schedule any other surgeries and let mine be the only case so he can take his time to help my heart feel better. The surgery will start at 7:30 am. This surgery can take anywhere form 4 to 6 hours. My heart is really tiny so doctors like to take their time and be sure everything turns out great. I was also introduced to Snapchat, I think mommy had too much fun with the filters. She didn't let me chose the filter because she feels this one was the cutest for me, but I wanted to be silly. Maybe dad will let me borrow his phone later and ill take silly pictures.

05/05/2018 - 05/13/2018 Truth is not much has happened. I did get to start occupational therapy and try out bottle feeding. It was really strange because I thought it was just like a pacifier. Turns out I have to do a little more work. The first day I only drank 5 cc's, the next session I drank 13 cc's, and the last session I drank 9 cc's. Little by little I'm getting my grove going. I just get tired and fall asleep; which is normal for having hypoplastic left heart syndrome. I got to switch rooms and now I'm in a big girl bed. It is HUGE!! I have so much room now. I also got this cool new toy with fishes that swim around that plays music. I honestly cant sleep without it now. Everything is calm and steady. I'm just eating, pooping, being cranky when I need to be changed (I let them know once I'm done going potty), and enjoying my new toy.

May 2, 2018 - May 4, 2018 Guess who started to gain weight?! This girl right here. Wednesday was supposed to be my surgery, but doctors are in no rush. They want to be sure that I have the best outcome possible. My feeds continue to go up each day. White blood cells are still higher than the normal range and I am having really low fevers (nothing over 100.3). For most children that isn't a fever, but the doctors and nurses do not want it to get higher than that. If I get to 100.5 they will start an antibiotic; that has not happened up to today. Other than that everything else has been constant. I also have been very fortunate that so many people have gifted me elephants. They have been my good luck charms.

My heart rate, oxygen levels, and blood pressure has been relatively constant this week. I was scheduled to have my Norwood surgery this week, but it got postponed until further notice. The doctors are being extra careful due to my white blood cells being a little higher than normal. They just want to rule out a possibility of an infection. The cultures of my blood test come out negative (meaning I do not have an infection). They do not want to risk it either way. I got a few medications removed as well so I am a little more awake for longer periods of time. I get to see mommy and daddy more often!!! I still have a NG tube where they feed me mommies breast milk.  Mi frecuencia cardíaca, niveles de oxígeno y presión han sido relativamente constantes esta semana. Estaba programado para mi cirugía de Norwood esta semana, pero se pospuso hasta nuevo aviso. Los doctores están siendo extremadamente cuidadosos debido a que mis glóbulos blancos están un poco más altos de lo normal. Sol...

4/28/18 - 4/29/18 Weekends are my favorite starting Friday. My grandparents and others I love dearly come visit me. I might not see them, but I hear their voices. I know they want the best for me and continue to cheer me on. My tia Pau is probably the funniest, she says by the time I turn 10 ill be as tall as her or taller. Since I have much less medication I am not as sedated as I have been these few weeks back. Mommy and daddy were able to finally see my eyes wide open and I was finally able to see them. Los fines de semana son mis favoritos a partir del viernes. Mis abuelos y otras personas que amo vienen a visitarme. Puede que no los vea, pero escucho sus voces. Sé que quieren lo mejor para mí y continúan a darme porras. Mi tia Pau es probablemente la que me hace reír más; dice que cuando cumple los 10 años ya seré igual de alta como ella o más alta. Ahora que tengo mucho menos medicamentos, no estoy tan dormida como he estado las últimas semanas. Pero que creen, mamá y p...

4/23/2018 - 4/27/2018 This week has been very eventful! The doctors closed my little chest and all is going well. They also want to start feeding me breast milk through an NG tube. Slowly but surely they want to prep me up for surgery.The plan is to decrease the amount of medications I am receiving.  Then they want to take this breathing tube out. For that to happen I need to depend on it less. Once the breathing tube was taken out on mommy gave me my pacifier. She thought I forgot how to use a pacifier, but silly mommy I love my pacifier! Also mommy and daddy got to carry me, I slept the whole time. Their arms are just so comfortable. By Friday my feeds went up and the doctors decided it was best for me to gain weight for the surgery and relax over the weekend. The big surgery is scheduled for Wednesday May 1st. ¡Esta semana ha sido muy agitada! Los doctores cerraron mi pechito y todo va bien. También quieren comenzar a alimentarme con leche materna a través de un tu...

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...