Not too much to update but I thought I better post before I forget to mention that we finally got Emma's feedings changed. She was eating every 3 hours all day and night long. To cute some calories they have stopped her 3am feeding. They also added a mult. vitamin to her diet to make sure she gets all the good stuff she needs. She is on scooby doo vitamins right off the grocery store shelf. After much debating we decided that they would give her what she needed better than any prescription kind. She gets a half a pill and I crunch it up mix it with water and push it through her mickey button. I spent the day yesterday at the 89's day parade with my sister, her kids and Emma's brother and sister. Emma stayed home with daddy and her nurse Cindi, it was just way to hot to take her. I took this picture of Emma yesterday afternoon when we got home and thought I would share it with you.
Sunday, April 23, 2006
Posted by LJR at 7:46 AM
Thursday, April 20, 2006
These are Emma's machines. From the left to right she has: A pulse ox machine which tells us her heart rate and the amount of oxygen in her blood. The big one in the middle is her ventilator which helps her breathe when she forgets to. The machine with the clear and blue tubes coming out of it is her heater for her vent. It adds humidity to the air she breathes. The machine on the far right is her feeding pump. It pumps her special milk into her 'mickey button' which is a port put into her belly so we can feed her. She also has a machine that suctions the mucus from her trach and drool from her mouth but its not in the picture because we 'hide' it under her bed.
Posted by LJR at 9:14 PM
Ok I have made a first post with background info now I will begin to post updates for all of you to check on Emma. I will try to get one on weekly but we will see how that goes. We went to JD McCarthy today for her physical therapy. She did very well. I finally have someone there who is going to tend to her nutrional needs. They kept sending me to one doctor and then another and another and no one cared she was getting to big! She is 27lbs 4 oz right now. They are going to change her food and start to weight her more often. She did a wonderful job at therapy and didn't even fuss at her therapist Amy. SHe slept through about half of it. They are working on getting her a neck brace that will fit her and help her hold her head straight, since she favors her right side. We saw Dr. Fields yesterday (her main doctor) and he gave me some eye ointment for her matting eyes and told me to use some cortaid on her check where I think she might have eczema or something. We will see how that works. She is sleeping in her chair now with her cabbage patch doll. She is worn out from her PT. I just want it noted here that taking care of Emma is so fun and I love her so much. She is such a blessing and everyone that has the chance to get to know her would agree. She is perfect.
Posted by LJR at 1:45 PM
Hmm...what can I say about my darling girl Emma. She was born Oct 16, 2004 about 10 seconds before her twin sister. I found out at 8 weeks I was having twins. They thought they were conjoined but they ended up being something called monoamniotic monochorionic twins. That is a fancy word for saying their was no membrane seperating them and that they shared a placenta. It was a high risk pregnancy, because it put them at risk for cord entanglement and something called Twin to Twin Transfusion. I went into preterm labor around 25 weeks but thank God the girls made it to 31 weeks. Emma was 3lbs 6 oz and Ella 3 lbs even. They were both 15 inches long. Emma suffered a lack of oxygen due to cord entanglement and suffered brain damage. She has since been diagonosed with cerebral palsy. She has no swallow or gag reflex. She can not roll over, sit up or do things a "normal" baby can do. She was given a trachestomy in her neck to help her breathe and a feeding tube to help her eat on Dec 13, 2004. She came home for the very first time about a week after that. She kept having problems breathing, she would just forget to breathe sometimes so on June 8, 2005 she was put on a ventilator and sent home July 5, 2005. That has made a world of diffrence. She has been home with us ever since growing like a weed and making each day more special for us than the day before.
Posted by LJR at 1:30 PM