Tuesday, August 30, 2011


The NICU is such a bizarre place. It can hold both extreme happiness and extreme terror in an instant. Or it can be filled with blue skies and sunny weather but have rain clouds pouring down over one area and vice-versa. Today was one of those days. I'll start with the good.

When we walked in this morning, the doctors were already rounding by Naya's bedside. Strange for a couple of reasons, mainly that we got to the hospital early this morning (around 8:30) and the doctors don't usually round until 10ish. We snuck in and crept toward the back of the room so we didn't disturb them and listened in for a few minutes. After the attending noticed us she said, "have you been here yet this morning?" We told her we just got there and she told us to go look at our daughter. Dan and I went to her bedside and we saw, basically, a different baby. Naya looked like she had shed 10lbs overnight. Her eyes weren't painfully puffy, her chest had shrunk drastically and her nose actually looked in proportion to her face. She looked absolutely beautiful. I started crying, Dan had tears in his eyes, Brooke (nurse) started crying and the attending even said she had to leave the room because we were going to make her start crying. She also had tears in her eyes. It was an incredible wonderful and powerful moment.

Naya has stayed pretty stable all day with a few dips in blood pressure and sats but nothing too significant. Her pressers have remained pretty consistent all day too, which is huge for her. And they were NOT at very high levels. Her urine output has been amazing all day and right now, she is at a negative 200ml for the day. (She was at -100ml yesterday.) She actually looks smaller right now then she did this morning. My little girl is so amazing. I hope this is the corner that we've been waiting for. I'm so proud of her. My strong little bubble monster.

Today volunteers also brought by a sweet little teddy bear made for her by another child. She is wearing a princess costume and is named Butter Cup (two words). Very sweet. Also, every Tuesday, volunteers come by and give patients, parents and nurses massages. Dan and I enjoyed that. I think Dan may have even gained a few inches from the neck massage. One of our favorite night nurses is also on tonight, after a weeks vacation in New York. She told us that she and her fiance went to the Yankee's game on Saturday night and at one point, were discussing Naya. I guess her fiance said "how about this next hit is for that little girl." Apparently, the next hit was a grand slam (the second of that game). We really appreciated that story. Gave us more hope for some reason.

And now the bad. The little boy in the room next to Naya passed away today. I'm not sure what was wrong with him but he was on something called Ecmo where he was hooked up to a machine that essentially acted as his heart and his lungs (his blood was pumped out of his body through the machine and then back into his body.) It's basically dialysis for the heart and lungs. It was a procedure that they thought Naya might need but she's too sick for. I knew something was up because when we came in this morning, a whole surgical team was in his room. After they left, they closed all of the doors and shut all the shades. When I went out of Naya's room to use the bathroom, the door was open and they were cleaning out the room. I asked Brooke if he had passed away and she nodded. I cried for that little boy even though I did not know him nor had spoken to his family much. Hit way too close to home. I only pray that his family has the strength and support to get through this.

I want to thank everyone again for their support and prayers for our family during this time. We are consistently blown away by the love, thoughts and generosity of our family, friends and community. I can't believe how much effort and expense people have put in planning fundraisers and setting up accounts and websites. You all know who you are and we are incredibly thankful. Today, my dad brought by cash for us that was raised by some community members at a recent poker tournament they held for Naya's benefit. We are very lucky to have everyone in our lives. I can't say that enough. 


  1. Thank you for your words, we have big prayers for Naya and her wonderful family!

  2. Wow Jamie! I'm crying for both the joy and excitement for the improvement with Naya, but the sadness for what that little boys family must be going through. My prayers are with all of you! Now you call Naya your little bubble monster! I think I'm gonna call her pee pee girl! She'll love that when's she's like 12! I am so proud of her (& yours and Dan's) strength. She literally is the first thought of my morning and the last thought of my day. We are all continuing our prayers!

  3. Jamie - you have my nightly prayers. I'm a faithful reader and our family is pulling and praying for your family. Naya - you get well soon! See you at the Clark Center in December. I'm not kidding. GET WELL SOON!
    Love and Prayers, Patty

  4. Jamie, Just want you to know I am following your family's journey with hope, prayer and admiration for all of you.

    Sue Leadley