Thursday, February 4, 2010

February 4th, 2010 (Updated 10:10pm)

Things seem to be moving fast! Dr. Caty's surgical team dropped by first thing this morning and Dr. Walker said that Lily is no longer on their daily charts. "Dr. Caty signed off on her going home," Dr. Walker said. "It's up to the NICU doctors for the exact date." Tracy and I just looked at each other, our jaws dropped.

Wow! We were told that Dr. Caty would not sign off on her going "to the zoo" until Lily gained weight for three days straight (that would put it at Saturday . . . and by the time the NICU doctors signed off, possibly Sunday).

At this rate, Lily may be going to the zoo tomorrow!! We should know more later, so stay tuned.

In the meantime, there's still another update or two to get to today.

First, Kim, Lily's night nurse, performed a standard hearing test on Lily. Unfortunately, her right ear seemed to have some trouble, so there will be a future trip to Children's at a later date for something called a BAER hearing test. For this test, instead of relying on the baby to respond, there are leads hooked up to her head that can read the brainwaves. It is more reliable than a standard hearing test. The doctors here were not concerned, and said that there are many babies that fail the standard hearing test, but the BAER test shows that they can hear just fine.

Later today will be Lily's Car Seat Challenge. That's what they call it. It's a funny name and it sounds like Lily could win a million dollars for getting through it. But even better!!!!---->if she gets through it, she is one step closer to going home!! We will take that over a million dollars any day!

Until the updates later on, here are some pictures from today. I hope they brighten your day the same way they brighten mine!


OK....well, if the Car Seat Challenge was worth a million dollars, we just lost! They never told us if Lily could phone a friend or poll the audience. Either way, she didn't care. After 15 minutes in the chair, she started screaming her head off. The nurse, Cathy (LOVE HER!!!!) said let's not make her scream for the next hour and a half. She said we can try later when she's more tired.

The good news is that she didn't de-sat, her oxygen levels were fine. They don't care if she cries or screams her head off. They only care that she keeps her oxygen levels high. So its not really a failure. More of a voluntary abatement.

Otherwise, Lily had a fantastic day. She is always so calm and peaceful. We asked Jaysaree if it's possible we are going "to the zoo" tomorrow. . . she said she wasn't sure, but "anything is possible."

It would be so great! I know I haven't talked much about Grace in this blog --she is Lily's 10 year old half sister. When Tracy and I started this blog, our intention was to focus on Lily and her battles and her successes and backsteps. It has been that, but it also turned into our battle with our emotions with everything that's going on. We intentionally wrote around Grace for the most part because her absence from our lives this past month has hurt us almost as much as the situation with Lily. Grace's mom has kept Grace with her a majority of the time so we could spend our days with Lily. Luckily for us, Grace has been a trooper through all of this. We talk to her almost every night on the phone, giving her updates. She always ends the call with, "Give Lily a kiss for me!"

Grace has not even met Lily yet, and that's been a source of great anguish for us. The NICU is only allowing visitors 14 and older. A couple weeks ago, Grace told me that she wanted to "beat up the security guard and run on the elevator to see Lily." She even said, "I don't care if I go to juvie!" She is so funny like that!!

If Lily comes home tomorrow, our plan is to bring her home and then I will go pick Grace up alone. I will then bring Grace home and she will be so surprised to find Lily and Tracy waiting for her. It will probably be one of the most emotional moments for Tacy and me. We have waited so long for this. So if you have the chance, buy some stock in Kleenex because we will probably go through a lot of it!!!

Good Night!


  1. What a beautiful family!

    I found your blog through a google search for VACTERL and just spent the last hour or so reading through everything with tears running down my face. My son was also born with VACTERLS and is affected in the VACRS areas.

    He will be 3-years-old this May and at this moment is racing around the family room on his bike looking like a maniac. :) It was hard to imagine during those first few days, months, and even the first year that we arrive at this place in our lives - with a pretty much normal toddler and an end to the constant, suffocating worries about his health. It was a crazy first year or so filled with lots of appointments and tests and surgeries, but my goodness do we ever have something to show for it!

    I look forward to seeing what fun things your lovely Lily will be doing in a few years.

    And I'm especially looking forward to a picture of you giving Dr. Caty a bear hug in the near future. :)


    PS - if you haven't joined us already, most of the VACTERL families in the US connect here - health/groups/

  2. i am so excited and today's pics are awesome

    much love