Scarey Saturday

It all started when Claire refused to breastfeed around Thursday evening. She was not fussing, just would not latch on and seemed content and tired. My lactation consultant said that was normal when your milk comes in that a baby might reject you until your breasts soften. So I began to pump Friday morning and she took two ounce and a half bottles within the first few hours, later that evening she would not suck or swallow when given a bottle. Chad and I tried to feed her several times throughout the night and were convinced that she was just extremely tired and she would feed better after some rest in the morning. Chad was changing her diaper around 8:30am on Saturday morning and noticed he could not put Claire's leg back in her pajamas like normal. He felt her legs and they were frozen stiff sticking straight out in front of her. He immediately yelled for me and we agreed that we needed to get into the doctor right away. We called her pediatrician and were able to get in for an appointment. As we sat in the waiting room we were rocking Claire in her car seat and playing, as she was acting normal and coherent, when we noticed that her cheeks started to tighten as well. When the doctor undressed her to exam her legs and weighed her he said that we needed to call the rescue squad right away to take her down to the Children's Hospital ER. She had lost a lot of weight and was completely dehydrated from not wanting to eat. She weighed 5 lbs 13 ounces. When we got there they had suspected that it was meningitis or something caused by Group B Strep. I thought that was pretty common and I had heard about it before and knew it was curable. But as the afternoon progressed I heard the doctors suspecting that it could be one of three things a metabolic disorder, infectious disease, or genetic disorder. Later that evening we found out that on top of one of these three underlying conditions she had two heart issues. The first one being a narrowing of the passage way in her aorta that needed correction as soon as she stabilized and the second a valve that separates the two chambers of her heart that was slightly open and eventually could close itself or would need to be closed later in life. All of this had caused stress on her kidney, liver, and built up gasses and toxins in her system, which was just moments away from renal failure. I don't really remember too much detail about that night other than one of the intensive care doctors that kept saying "if she would make it through the night" and "if this disease or disorder was survivable." I kept telling my Mom that this whole experience felt surreal and like it was not happening to me. I could not stand it when our updates would sound more fatal and more negative. I kept holding out for some good news because I could not imagine her not being with us anymore, especially now that she was home and we just started to form our routines. As time went by the night did not bring any better news and the doctor told us that she had about a 50% chance of making it through the night, so our families decided to hold a Baptism just in case. We named Chad's sister Cassie as the Godmother and our friend Aaron Kaisershot as the Godfather. We had two priests from Saint Roberts and Saint James and about 20 different friends and family members present at midnight. At that point all we could do was have faith that she would fight through this and pray for her. Thank you to all who were present and all those prayers we received that night.