Team Kaci

I was 20 weeks pregnant when we found out our sweet baby girl had Spina Bifida, hydrocephalus and a Chiari II malformation. Heart breaking to say the least! The day after Kaci was born she had spinal surgery on her lower back to repair the opening and spent 9 days in NICU recovering before getting to go home. We had weekly ultrasounds in Ft Worth to keep a close eye on her hydrocephalus but at 21 days old her back started leaking spinal fluid from the pressure being caused by the hydrocephalus so she ended up getting a shunt. The shunt surgery was really hard on Kaci and was really scary for us but after a few days of a rough recovery you could tell she felt much better and benefitted from having it. From the beginning we knew Kaci needed spinal surgery and would probably need a shunt but her needing Chiari II decompression surgery came as a shock! She was doing awesome until one Friday June 20th she just started breathing really loud. Started off slow but got bad fast. I rushed her to her doctor in Abilene who admitted her into Hendricks thinking she had a floppy larynx (which she does) and maybe a virus causing her to stridor (the loud breathing). She was in the hospital all weekend not showing much improvement but all her stats were staying good so they thought we could go home and the stridor would get better in a day or two when the virus was gone. It was a rough couple days at home trying to keep her calm and comfortable before I took her back because she didn't want to eat. The doctor was really concerned at that point and called Cooks to come pick her up by jet. Her first plane ride and didn't even get to go anywhere fun but she was going to get better care!! After a week of test- swallow function, 4 MRI's, and a throat scope we found out she needed a Chiari II decompression surgery and maybe a trach. A very complication thought processes was involved in making the decision for surgery but she needed it but it was the hardest decision we would ever make. Her vocal cords, hands and swallowing were being effected. She had surgery on July 2nd-turned 3 months old that day! Dr. Honeycutt removed C1 and C2 of her spine to take that pressure off her vocal cords and even though we weren't expecting to see improvement immediately she did! She got the breathing tube out easily which wasn't expected and had little to no stridor for nearly 24 hours. She regressed some after throwing up her stridor returned. We are praying hard she will not need a trach but its still something she might need. I will keep everyone updated! She is a strong little girl and even though she has gone through so much she always smiles through it. We are truly blessed to have her and we thank everyone for the love, support and prayers!