Baby Kiba was born on January 16, 2015 with a rare disease called Epidermolysis Bullosa and Aplasia Cutis Congenita. This was a surprise to everyone including the doctors. The hospital staff was not equiped to deal with his case so he has been transported to Hershey Medical Center. When Kiba is released from the hospital he will need around the clock care while at home and will not be aloud out of the house for quite sometime except for doctors appointments.
Kiba update 1/23/2015:
Kiba is still in Hershey Medical Center NICU! He is doing great but we still have a long way to go. When Kiba first got to the NICU he was given an IV due to losing too much fluid through his blisters and open wounds. He was only drinking 10 – 20 cc of breast milk every four hours. (NO formula for this Warrior King!) Today (1/23/2015) he was able to get his IV taken out. 🙂 HE started to drink 60-80 cc’s of breast milk starting today!! YAYAYA GOOO KIBA!! 🙂 He still has very bad blisters on his little bottom, but hopefully they will heal up soon!! He is a WARRIOR and our little Vaseline ball of joy. On Monday 1/26/2015 we have a meeting with all of his doctors to hopefully go over a care plan for when he is released to go home!! This is going to be a VERY LONG journey for our whole family, but we know through continued prayer and support we will conquer all and hopefully find a cure for this NASTY disease that puts our precious babies in so much pain.
Mommy Update 01/24/2015:
Kiba is doing GREAT!! He has developed two more blisters on the side of his stomach due to him moving all over the place. He also has some red spots on his face from him playing with his face. (He does have mittens on so he cannot scratch his face.) He is sleeping peacefully right now with his little mittens on and in his little nest the nurses made for him. Last night Mr. Warrior King peed all over me!! HAHA It scared me but it gave everyone a good laugh. Dr. Toom came around last night and told me that I am doing an amazing job with him and that she is really impressed how I am handling this whole situation. (If she only knew!) I also talked to dermatology yesterday and they told me I was doing a great job keeping him all Vaselined up and keeping his bandages clean!! So I must say I am proud of myself. We are still taking it day by day and hopefully on Monday after our meeting with the team of doctors we will be able to bring him home sooner than Friday.