Frida Sofia

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.