Frida Sofia

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. Solo qu

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 tubo N