The "h-word"

Today I heard an awesome word that I had been waiting to hear for the past 3 weeks - "home." The doctors had yet to even mention the word, I think, for fear of getting our hopes up and making us think we had a set "deadline," but today they said that if Lila continues the way she is going now, we might be out of the hospital by the end of the week!

This morning Lila's feeds were bumped up to 45 mLs at each feed. I still had issues with this because when I am with her, she is nursing for about 2 minutes and getting more than her "allowed" volume. To me, that means she was tolerating more than what she was being allowed to take in the bottle. Our wonderful surgeon stopped by after her 12pm feeding and I mentioned this to him. He agreed that Lila did seem like she was able to tolerate more than what was in the bottle and upped her feeds to 60 mLs (2 ounces) - her goal volume! He said to continue beginning each feed with a few minutes of nursing, then offer the 2 ounces in the bottle. If she tolerates this volume we will probably stop the TPN tomorrow. If she gains weight without the TPN, then he said we would be ready to go home! Lila has been consistently gaining weight every day, except for yesterday, she lost a few ounces. I attribute the loss to a night of very poor volumes Saturday night - the nurses could not get her to wake up to eat. I really think this will improve when she gets a hunger cycle in place, which will hopefully happen when she gets off the TPN. She is up to a whopping 6.3 pounds. I think a few of the surgeons will be happy when we are out of there so I stop questioning everything. I just really appreciate that our surgeon looks at Lila's progress individually and makes adjustments based on what she is doing and how she is progressing. Many of the other surgeons want to make adjustments based on the "standard protocol" for gastroschisis babies and I don't think that fast progress is made that way.

Tom is at the hospital now giving Lila a bath and her 9pm feeding. We are anxious to get her home so that we can start spending time as a whole family. Tom and I have been doing a lot of "shifts" lately - one of us with Brody, the other with Lila, when Tom is not at work. Our parents have been very helpful by watching Brody or going to sit with Lila so one or both of us can spend some time with Lila. I can't imagine going through this without family close by. I can't say it enough how lucky and thankful we are to have such amazing support from everyone. I'll leave you all with some pictures of Brody on the way to the zoo last week and Lila from this past weekend and today. Brody insisted on bringing his football. You can also see his spiked hair, which he insisted I do and the remnants of some chocolate on his face. We had a good day!

Lila checking our her daddy:



You can just see Lila's central line in the following picture (under her right arm) which is what he gets the TPN through and is her last remaining "tube." This will be removed right before we are discharged.