Wednesday, July 15, 2009

Prayers and Thanksgiving...

I just talked with Brianna's mom. They had a scare with her last night. Please keep her in your prayers as they try to discover what is causing her spells. Brenda will be making her own post soon. It is such a reminder that with Trisomy 18 one minute they are fine and the next you can have the scare of your life. To visit Brianna's blog just click http//www.briannagiveshope.blogspot.com/

Also, in thanksgiving for Alyssa who has turned one year old today. To get thru this first year is huge. It never means our babies are safe, but it just helps defy those odds that 90% to 95% do not survive their first year with Trisomy 18. Please pray for Alyssa's family as they continue to cope with this diagnosis and the trial they will continue to face. To see Alyssa click here http://www.wndrfllymde.blogspot.com/

The following pictures are in honor of Alyssa's birthday. They ask that we wear T-shirt with money donated to two organizations and a sweet bracelet for Annabel and one for myself.

A PURPLE "A" FOR ALYSSA


T-shirts sold for Alyssa

Sweet bracelet that was also sold for Alyssa

It has been so nice to be back home. Last night all the kids were home and we made homemade pizza and most everyone helped. We all talked about our week at the beach and how excited we are to have my brothers family coming. He has two young children that we will get to spend the entire week with. My parents will also be coming for the week. Tara will have to work and will come up on the weekend. I am hoping my sister will take some time off during the week and come up for more than just the weekend. My nephew and his girlfriend will not be able to attend as the same for my brothers oldest daughter. We would love everyone to be there but we understand sometimes things come up.
We traveled to Houston today for Annabel's follow up appt. with her urologist. With the onset of the UTI last week and the IV antibiotics it was my hope that the decrease in her output into her diaper was due to the infection (pseudomonas). My hope was that when the antibiotics took care of the infection that she would have all those huge wet diapers back. Since we have been home the last couple days this is not happening. My homework from the appt. today is to catch her as soon as she wets her diaper and then cath her immediately to check her residuals. (With Annabel this is not that hard since she strains and then her diapers becomes so hot with the urine). So according to the doctor he wants less than 30 mls. for residuals. The last two diapers this afternoon upon returning have been 50 and 51. Each cath has been 120 and 102. With the infection gone(culture came back negative upon finishing the antibiotic) she still is not emptying her bladder. He wants me to check this 6-10 times and see if this is consistant. He did speak of the vesicostomy today and reminded me we knew the dialation was temporary. Actually, I knew that but thought we would get the 3-6 months out of it. But I don't want to forget how well she did during her surgery. God was totally incharge and He carried her along the way. My twins traveled to Houston with me today for her appt. On the way home as we were talking about what the doctor said and what we are going to do now to see what direction we will be going in with her. One of the girls asked the question "do you think what we are doing to care for Annabel is fair?" Also she said "do you think that we are making her have more pain?" It gave us a great chance to talk about how when I make these decisions that I am trying to make her comfortable for the time she is with us. If we weren't doing these things like, bladder/kidney, bowel, feeding tube placement that she would be very uncomfortable. It lead us to talk about bigger issues that could one day surface like her heart, kidneys or the possibility of Wims tumors(cancer) and we talked about doing things that would hurt her and possibly not change the outcome. Well it was deep but I was glad they were able to share what they were feeling. I think we all feel this and may not let ourselves share with each other. I will continue to whine about this thing I dislike so much, the monster called TRISOMY 18!

Tyler with Annabel

Tara with Annabel

Sunday, July 12, 2009

Should be outta here tomorrow...

When Dr. B came today she smiled and said "one more day"! I love to hear that. So today I sent our suitcase home and some of her equipment. Thank you for all your sweet comments, emails, text and calls. Today her culture had not grown anything but tomorrow will be the 48 hours and she isn't anticipating anything else. Her stool culture came back with blood and from what she said this could be normal post surgery. No c-diff which is such a relief. I especially need to thank my family who is so patient with me. Anytime I call they bring me whatever I ask and don't complain and also for coming to spend time and babysit with Annabel. Hoping when we are released it is a very long time before we are admitted back into the hospital. Also to Ms. Edie and Ben who gave me some afternoon relief and I was even able to go watch my sons baseball tournament.