Sunday, September 11, 2011

Today was a pretty stable day. Sometimes, it scares me to write that as I really hope I'm not jinxing myself. Naya's stats held pretty steady today. Sats in the 90's, normal heart rate and good blood pressure. I think the most exciting news for me is that she is essentially off the pressers. There is still one on but it doesn't need to be for her BP. They are just keeping it on because it helps profuse blood to the kidneys and should help her kidney function. Which is, of course, a new issue that has cropped up in the last few days. If these sounds like I am repeating myself, you are correct. Naya was originally transferred to CHLA because of her kidneys. Basically, all the drugs they have given her to get rid of the edema has caused her kidneys to react negatively. So now she's off the diuretic drugs but the edema is starting to come back. That is the most frustrating thing about the human body. It's all cyclical. One thing may help her heart but then it hurts her lungs or kidneys. You just have to hope that they eventually snap out of the cycle and their bodies adjust. Driving us crazy in the meantime.

It was a nice day in here though. Naya is sharing her room with an adorable little boy who is on ECMO right now. So that means 3 nurses in their room at one time instead of the normal 2, so Naya was lucky enough to have 2 of her primaries with her today. (ECMO requires 2-1 nursing.) We had a nice day of "That's what she said" jokes, Food Truck finding (there's an ap for it!) and costuming of the stuffed animals. Dan went all out with her lion. You can't see it but he has little booties on as well. Dan is very cute. He's like MacGyver when you give him a project.

We did have a funny/scary experience today. We were sitting here, doing our normal thing and all of a sudden, Naya's heart rate dropped to 75 (it's been hanging at about 145ish all day) and the monitor started frantically beeping. I freaked out for a second but Brooke told me not to worry. Apparently, for the past day, Naya has been doing this every time she poops. Essentially, she is bearing down when she goes potty. Sure enough, there was poop in her diaper. And don't ask me how she did it, but somehow she was able to push her catheter out of her bladder at the same time. Amazing skills my little one has.

Dan and I are going to head "home" soon as we are exhausted. It's amazing how exhausting emotions can be.

Good night everyone and thank you for your thoughts, prayers and support. As always, we appreciate it.

PS - Chicken Update:
I mentioned in one of my earlier blogs that there are random chickens in a parking lot across the street from the hospital. Well now, there are baby chicks too.


  1. Hi Jamie! I found out about your blog on babycenter. I read it all day and have been anxious to see how today was. I put Naya on two churches prayer chains and my daughter and I prayed too. Now you have friends in St Louis praying daily until Naya comes home. Our little girl was born July 6. I held her while reading your blogs. The whole time I kept hearing the song Wonder by Natalie Merchant. If you can sometime read the lyrics. Stay strong, Jamie and Dan! Naya has touched so many hearts and she's not done! God has some big plans for that girl! If you need anything please let us know! I think those baby chicks are a good sign! You two are an amazing couple and parents!

  2. Two quotes I loved, "bearing down." (Bears won today!) and how exhausting emotions can be... you are oh so right. I went and saw the lights of the twin tower ghosts tonight in NYC and thought of Naya, and you/Dan/Ty. Strength in unity. Xenia. Totally believe in it. I only wish that one day we can all be as strong as your family is! Much love sister.

  3. Go Miss Poopy Pants! That may be my new nickname for her! Again she will probably hate me for it when she is 12, but I don't care! Keep going Naya! You are such a strong little girl! As I write this I am fearful of all the grammatical errors I'm making! Sorry Jamie! :) Miss English major! I have a strange feeling there should have been a comma in there or something! Anyway we love you all and can't wait to meet Ms. Naya!

  4. jamie, i found your page through babycenter and am sending prayers your way. is there any way to send you a private message?

  5. Im so sorry you are going through this. I have been praying for naya since you posted on the birth board. I pray that she stays steady and improves a little more each day. My thoughts are with you and your family.