You already know that last night was horrible because Jude aspirated on his meds and we had to call 911. At least now we know it takes them over 10 mins to get here because we are in a Fort Worth annex. Anyway, he is ok. He slept most the night laying next to me, but would not sleep in his bassinet. When he got up this morning we knew it was time to administer the meds that he choked on last night. Mike's hands were shaking in fear and he was praying under his breath, but he was being so strong. I insisted we put his meds in 1 ounce of pedialyte. He sucked it down within 2 mins so that is now going to be our new routine. Since he got the entire dose for the first time he has been sleeping ever since. Which I worry his food intake is less, but I know the sleep is good too. He did spend an hour awake this morning with me talking to him like I always do. He cooed, laughed, and smiled at me. I realized last night by research that the dr's were basically saying the only thing that is normal in Judes head is his brain stem. He really did mention "all it takes is a brain stem to be a baby". I don't really agree with that because he smiles, rolls over, coos, and plays with you. Something has to be working if only a little bit. We also did some tests this morning with him I would walk to one side of the room and call him. No matter where I was he turned to find me and would look right at me. Last night was scary, but we made it through with lots of tears. The dr's have not given Jude long to live, but we have! They said he has close lipped schizencephaly, PMG ( but 2 doctors have differing opinions on that), a large arachnoid cysts in the back, a small cerebellum, missing his corpus callosum (or it's very very thin), and cortical thinning. In other words his brain is MESSED UP! I still question what I did while he was inside me, but the doctors reassure us it was just a genetic issue. He had that stroke and his brain never recovered and therefore formed wrong. He does so much though and we can only hope he continues too. We will cherish these moments we have with him, and get him the therapy he needs. We mourn for what we have lost, but we are thankful for what we have. Thanks again to everyone. I am in awe of my family and friends with everything they have done. I have offers from people to bring food, clean, and my best friend even set up a fund for Jude. I am just amazed!!!!!!!! My aunt even told me to quit work and live in her basement which isn't feasible but so cute she offered. I don't think I told you last night, but the fire truck ran over my neighbors mailbox and demolished it.....it provided a little horrible entertainment. They are German and had no idea what the hay had happened!!! We also learned our neighbor across the street is a physicians assistant, and he said if anything happens we can come get him until the paramedics arrive. That is so great to hear! I am sure I will keep having these up and downs. I slept until 12:15 after Jude went back to sleep and I am still here in my pajamas. Tomorrow I have to go back to work so I am spending my time with my kids today. I have the most amazing husband walking with me hand in hand through this tragic nightmare. Without him I know I would fall to pieces...thank you Mike. I will update more tonight.
Even in the hospital he is so cute!