Friday, August 26, 2011

4 weeks

As of today, Naya has been in the hospital 4 weeks. 28 days out of the 33 she has been alive. That's how the doctors start their rounds every day, by listing the baby's days of life and the length of hospitalization. Very sad numbers in the NICU. This place has to be the saddest place I have ever been in. They try to muddle the fact that there are 5 stories of the sickest children with bright colors and cute artwork. Please don't get me wrong - I am so appreciative of this place and the wonderful people who work here and are helping so many children - but it does wear on you when you think about it.

Enough of my rambling though. Onto Miss Naya. Or as my mother-in-law calls her Naya, The Warrior Princess. Or Naya Papaya. I tend to give my children lots of nicknames despite how short their names are. Ask Ty (or T-dog or T, as I call him.) Naya has had a good day. No blood pressure issues (cross your fingers) and sats have been up in the 90's all day (which we want!). They've been able to ween the pressers a bit and stay there. It's hard to get your hopes up when you know that she cycles but I have to believe and am praying that she is turning the corner. Scratch that, she will turn the corner. This is it. As for her pee, she isn't at a negative output yet but quite close. She is getting some more shots of diuretics tonight and I believe they are helping. (I can't believe I'm writing about my daughter's pee on a blog. She is definitely not going to like me very much when she is a teenager.)

One bright note of the day is that they believe they may have found the reason for all of the edema and why she her blood vessels are leeking so much fluid. She may have a rare lympathic condition that she could have acquired as a result of the sepsis. They started her on a new drug today that will help with this, in the case that she has this disorder. (I call it the Oreo drug since I can't pronounce it's name and it has oreo in it.) Weird to say it, but I hope she does because at least then we would know somewhat about what we are dealing with. If this drug works, it could help her vessels draw the fluids in, which will in turn help her kidneys pee it out, which will relieve the edema, which will lessen the pressure on her heart and lungs. Amazing how the human body is so tied together, huh. I'm praying this works. Again, it has too!

Dan's parents are still here and we had a nice day with them. We went out to Glendale for lunch at the suggestion of our favorite Nurse Brooke. Had a yummy lunch and went to the Americana at Brand. Walking into this "mall" felt like walking into Disneyland. They had a trolley that went around the complex. Check out this amazingly gaudy statue they also have there. The are so proud of it too - they have little gold plates all over the sidewalk. Anyway, we threw some pennies in the fountains and made wishes. I hope Gold Greek God Statue Man grants wishes.

I'm going to let her listen to some more music on Pandora and then Dan and I will leave to get some rest. We are going to do some mellow Classical music tonight because she had a lot of lively kids songs today. We think her favorite is "If You're Happy and You Know It" and "The Hokey Pokey" since she seems to move around a lot when they come on. Which they do. A lot. A few of the nurses have been walking around singing these songs too and wondering why. I feel a little bad but oh well.

Thanks again everyone for all of your support. Dan and I are still shocked and amazed at how much everyone cares. We truly appreciate it. I hate asking for more help but please keep this little lady in your thoughts and prayers. We need this to be turning the corner.


  1. This is just to let you know that back in your hometown of Bartlett thoughts and prayers are with you non stop. I heard your story through a mutual friend on Facebook and have been starting my day with good thoughts of your beautiful baby girl. I have daughters the same age as you Jamie, and can't believe how strong you are. That is what motherhood is all about I think. Your daughter has your reselience for sure and is feeding off your strength, will, and postive vibes.

  2. Jamie~ you guys are always in my thoughts and prayers. That little girl is absolutely amazing along with you and your strength ! Thank you so much for the updates...I look forward to reading them every morning and I pray for good news each time.

  3. just want to let you know that we all check our facebook feeds at exactly 9:30 so we can get your update. love you so so so much. :)
    (the other t-dog)