Alina’s Heart Journey

My daughter Alina was born on February 28, 2020. She was delivered via emergency csection at 36 weeks. This was the same day I found out my baby had a heart defect. I was then told that my baby has fluid in her tummy and around her heart. I didn’t know what this meant but I knew in my heart it wasn’t good. I broke down crying and scared. 

My ob referred  me to a fetal medicine doctor where I went for another ultrasound and an EKG. I was told my baby’s heart was enlarged and there was something wrong, it wasn’t pumping the way it should be. I didn’t know what this meant for my baby. I was referred to a cardiologist and they immediately had me in for an echocardiogram the next day. 

After the echo, the cardiologist told me there is fluid around baby’s heart, her heart is enlarged, it does not function the way it should. Her heart was not pumping/squeezing properly and she was in distress. The next thing she said to me “you’re having this baby today, right now” I was in shock, I was terrified, my heart sank, my anxiety was sky high and I couldn’t catch my breathe. I remember the words that shattered my heart “your baby most likely will not make it through delivery”

An OB walked into the room and told me I would be having an emergency c-section. I had to trust in this doctor that I didn’t know. I had no choice. In less than 2 hours my baby was born. She was alive. She was rushed to the CVICU and stabilized. She had then officially been diagnosed with a heart defect called Dilated Cardiomyopathy; enlargement in the left ventricle and Fetal Hydrops; fluid in the lungs. Alina now has severe depressed function of the right ventricle due to the poor function of the left. 

Alina has been intubated since birth. She cannot breathe on her own because her heart is very weak. She is on many medications to help squeeze her heart to pump blood to the rest of her body. There is no cure, there is no treatment. Her only chance to live is with a heart transplant. Although chances of finding an organ her size is limited and could take several months, I still remain positive and have hopeful that there will be a match for her.

Alina has been officially listed for transplant as of 5/8/20. Her listing status is 1A, meaning she is highest priority in a medical urgency. She also will be receiving a Berlin Heart sometime soon.  Her insurance does not cover all of her medical expenses. She has lived in the hospital since birth and could call it home for several more months to come. I am struggling with medical expenses, gas, bills , and other day to day living expenses. 

I am reaching out from the bottom of my heart if anyone can make a donation to help my daughter and I through this very difficult time. I am asking for many prayers and positive thoughts for baby Alina through this difficult journey. Please help us if you can.  
Anything counts. ❤️ 

#chdawareness #heartwarrior 

We could possibly be going home within one more month for the first time since she’s been born and we do not have anything ready. I am in need of all things baby. We need clothes, diapers, wipes, bath supplies, sheets, blankets, toys, anything  and all things baby!! If anyone could please help.

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