Wednesday, January 27, 2010

January 27th, 2010 --- D-DAY!!!!

We didn't know it until we got to the hospital, but today is the day we find out if Lily's 2nd surgery was a success. All week, we were told Thursday would be the day of her fluoroscopy to look for leaks at the 2nd surgical sight. Our morning nurse, Alicia, said that Radiology called and they would take Lily down this afternoon.

So again, it is a waiting game again. Of course, Tracy and I are nervous. The last time Lily had this test, the Proximal Fistula was found moving Lily from 1 in 2,500 to 1 in 60,000. A third Fistula is currently undocumented, so it would truly make Lily one of a kind. (She already is that to us, so our vote is for NO MORE FISTULAS!!)

It is kind of a bittersweet day. Tracy and I have become friendly with another family in the NICU. Their daughter Janelle was recently moved into our room, so we have managed to become closer through lengthy conversations about our daughter's conditions. It has become easy to share in the emotions after seeing what each baby girl has had to go through, whether it is a step forward or a step back. Even though Lily had her test to go through today, their baby girl was also having a procedure. They were so nervous (just like we were last week for Lily's surgery). So Tracy and I were actually stressing ourselves out over both of these strong little girls. Big days for both of them!

More waiting. Tracy and I were able to hold Lily while we waited for radiology to call. Lily was a sweetheart, sleeping most of the time. She just loves to be held after so long. She would wake up here and there, look at us with her big eyes and tell us in her own way not to worry.

The call from Radiology came at about 1:45pm. They want Lily down there by 2pm. Alicia packed her up and rolled her off.

We wait again. Nerves starting to act up again. We were trying not to think about the last test Lily had. Positive thoughts. She's been doing so good, we shouldn't expect anything other than good news, right!?

At about 2:40pm, I saw Alicia walk by the waiting room with Lily . . . Tracy and I ran out to the hallway. "Everything looks good!" Alicia said, "but Dr. Caty will have to review it first, so it's not official."

Phew....Big weight.

As we were walking back to Lily's room, we ran into one of the other doctors. She said the same thing Alicia said. But we are not going to know for sure until we hear from Dr. Caty.

We would wait as long as we have to for Dr. Caty. He was in with Janelle for her procedure and we wanted him to spend as much time with her as he needed to!


Janelle is rolled back into the room and Dr. Caty follows in soon after. He comes right to our corner of the room and confirms that Lily's passed the test with flying colors. In other words, LILY IS FIXED!!!! There are no more holes, no leaks, her surgical sight looks great! The Chest Tube can be taken out tomorrow! What a relief, she will feel so much better!! Lily is a mild mannered baby to begin with, it will be hard to imagine how much quieter she may be without the Chest Tube sticking uncomfortably halfway through her abdomen...He also said they will continue to feed her through her replogle. They need to get her feeds up to the norm for a baby her age (which is about 3 ounces every three hours). However, they don't want to increase it to an ounce per hour right off the jump. It needs to be increased gradually. Hopefully, she will be up to an ounce per hour by Saturday. THEN we can try to feed her....(SO!!!! don't be surprised if there is not an update until Saturday or Sunday!!)

Lastly, everyone who reads this, please add Janelle to your prayers. It seems her procedure went as expected, but she has a very long and difficult road ahead of her. She and her parents are very strong, but extra prayers will certainly help, and maybe can give them a shortcut here and there.



  1. Thank you for the update,
    I am so happy that Lily did good for her second time and that she is doing so well.
    It sure is nice for Dr. Caty to give you good news.
    Love the new pics, and Scott your right her eyes are the best.
    I love you all
    Aunt Teri

  2. Great to hear the 2cd surgery went well. Great pics too. We will say a prayer for Janelle each day too. Love you guys.