November 2, 2016 was a night we will never forget. Barely making it to the hospital, we welcomed Sofia Isabelle Demboski at 10:20pm a week early. Leading up to that day, we had perfect ultrasounds and appointments so we were blessed and anxious to meet our healthy baby girl. She came so fast and so many people commented on her perfectly shaped her head looked. She was beautiful. As days and weeks went on, my husband noticed that her head looked big. Having an older child, I thought nothing of it because I assumed some babies just have odd looking heads at first but that she would grow into it. At 3 weeks old I noticed that her headbands and newborn hats did not fit or were tight on her head. I thought my baby was just going to have a big head. I had no instinct that anything was wrong.
December 2nd, we showed up for Sofia’s one month check up. The nurse measured her height, weight and head and left. When the Pediatrician walked in he took one look at her and said that he needed to go get his measuring tape. He measured once, twice and on the third time I got a pit in my stomach and thought, my husband was right and I should have listened. The Doctor looked into her eyes and said her eyes have “sunsetting.” A term I had never heard of but he explained. He asked if I had my pump on me and when I said no he said do not go home to get it and just to go straight to Children’s Healthcare of Atlanta. We are lucky that amazing hospital like CHOA was so close to us. He said he thought she had Hydrocephalus but not to worry that it was very treatable and more common than I may think. He seemed so calm so I thought we would just go get a simple medication and go about our day. I started to google as any mom would. I started to panic as I looked at pictures and read articles. I thought “there is no way she could have this.” She was tiny and innocent so I just did not think it could be possible. I called my husband first and then my mom. Both made their way to the hospital.
First we did an ultrasound and when the Radiologist came in she said that she was going to admit us to the ER and get us connected immediately to a pediatric neurosurgeon. A NEUROSURGEON!! So there was not going to be a magic pill, my 8lb, one month old little girl was going to be having brain surgery. I was devastated and heart broken. I could not help her or just take this all away from her. We prayed. We prayed a lot. We asked God for strength, wisdom, faith, and healing.
That evening she had an MRI which was so hard to see her get strapped down and rolled into this big machine. She could not eat because we were not sure when the surgery would be. I was breastfeeding so every 2-3 hours I was pumping to keep my supply up for her. And at 8am the next morning, our daughter was taken from us and we cried and held each other as we watched her get carried away into surgery. Those hours felt like days. The nurses called us throughout the surgery with updates. And then finally we got word that she was out and did great. I was so happy to hold her and within a few hours she gave us her first smile. I was happy to know that she could see better and that the pressure on her head was lifted. She was happy and I could see it in her sweet little smile. I laid in bed with her for 3 long days and nights making sure she knew I was right there with her. My husband and mom traded off staying with us and we had support from so many friends and family during our stay. The nursing staff was simply incredible.
A few weeks later we had her stitches removed and on June 21, 2017 we go for her 6 month MRI and check up to see how the shunt is doing. We were told that most infections happen in the first 2 years and even within the first 6 months so we are in constant prayer that God will watch over her and that we will leave the appointment with a clean bill of health. From here on out we will be on edge with every fever, headache, vomiting, fall or bump to her head. She is meeting one milestone after the next which is incredible that she is not having any developmental delays so far. We will forever be grateful to her surgeon, Dr. Andrew Reisner, his staff, the nursing staff at CHOA and all of our family and friends who have helped Sofia and our family thus far and will continue to throughout her life.
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