Thankfully today was uneventful. Anara's NG tube was moved from suction to gravity and maybe tomorrow it can be removed. She was a little warm a couple times today, but nothing significant. Tomorrow they are planning to shut off the epidural and see how she does. If we can't manage her pain otherwise then she can stay on the epidural one more day. She is still draining well and she produced a little gas today which means her bowels are moving again (she had 2 bowel resections).
Today Nate was playing a CD for her and it came to a song that Violet doesn't like and always asks to skip. Nate said to Anara, "Violet doesn't like this song does she?" and Anara said, "Uh uh" and shook her head. We also got a couple smiles and the tiniest little happy noise when we put in a favorite DVD.
I say "pretty good day" because although Anara is doing great, Violet is struggling again with a hacking cough. She had 3 vials of albuterol today and is still upstairs hacking away. We are praying that she gets better fast so that we don't have two kids requiring around the clock care. We are hoping that Vi sleeps tonight so that Nate and I can get rest too (my mom is at the hospital and there isn't much hope for sleep there).
About catheterizing... Anara doesn't have her native bladder anymore. It was exposed to too much trauma which made it a cancer risk and too tough to work with anyway. They took a piece of Anara's small intestine and her colon to create her reservoir. It is attached to her stomach wall and doesn't hold the normal place of a bladder. It is not even connected to her bottom so there isn't a urethra or a chance of cathing her through anything other than her (something I can't remember the medical name of) appendix.
The amazing thing about her condition is that there is no indication that she wouldn't be able to carry babies. She will have to deliver through C-section with the help of urology (to help understand her anatomy). It is exciting to think that even though her anatomy was changed so dramatically, she can still have babies. Also, before the surgery Anara was considered to have ambiguous genitalia (because of the malformation of genitals and hip displacement). You can take my word that she indeed looks like a little girl now. I can't believe how much they changed the way things look down there. We kept asking her doctor how she would look after the surgery and he kept saying, "She will look good." I wasn't very satisfied with this answer presurgery but he was right, she looks good. We will wait a little longer for them to create a cosmetic belly button, but we aren't in any hurry.
One Violet quote: Today my mom was trying to help Violet finish her dinner. She was taking forever and my mom kept telling her that she couldn't get down until she ate a little more. Vi asked again to get down and my mom said, "When can you get down?" Violet responded, "After my surgery is over." Ha.
Thanks for your encouraging words, support, and prayers.
6 comments:
I'm glad she is showing little signs of her happy self. The more I read about, the more I realize this was a more traumatic or involved process than I had first understood. What a brave little girl and mommy! We are sending up continued prayers from TN.
nate and amanda,
just read and caught up on your blogs...so thankful to read that she is doing well. We will be praying for her and you all.
Amanda! Bless you for updating this frequently! I love that although I am in Africa I can log on and see how to pray specifically for Anara and for you guys!
Bless you for enduring this long week and thank the LORD that he has carried you and Anara! I will keep praying!
So glad that her bowels are moving. That was always one of the most exciting things for me when Hunter was in the hospital. She will only get stronger!! Why is it that she is going to be in the hospital for 3 weeks?? Hunter has his spine cut and he was only in for a day and a half. I'm sure they are right in keeping her, just don't know why it is so long!
Danielle - not sure of our exact hospital stay, but Anara's surgery was pretty major and she is still labeled "critical" on the floor even though she was moved from ICU. She had two pieces of bowel removed and made into a bladder-like reservoir. She has sutures in her bowels, bottom, ureters, resevoir, hips, legs and stomach. She still has some major tubes coming out (even her JP is still draining). Her abdomen was open for the whole 14 hour surgery. They cut her pelvis and I think they are keeping her sedated long enough to let some of her bone regenerate. Also she is a little anemic and had a couple units of blood during surgery so they are watching her labs pretty closely. Hmmmm..... long answer to a short question, but I think that is why they are keeping her so long. Thanks for your support and encouragement.
Tears coming to my eyes as I read your post this morning. I can just picture Anara, 20 years from now, marveling at how far God has brought her physically, emotionally, spiritually. She will be such a strong woman because of all of this! Still praying every day for quick healing. My friend ran a 1/2 marathon on Saturday. She was planning to try to pray for the entire time (amazing, I know) and I asked her to pray for Anara. So, people you don't even know are praying for you guys. I hope you can feel the prayers.
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