September 8th
Today was a better day for sweet baby Lilly. Yesterday was very traumatic with a chest tube inserted, no more breast milk, and waiting to hear if we would go to surgery. I am pleased to say that today is quiet and calm. Lilly is resting comfortably.
Chest Tube:
Yesterday afternoon they inserted a chest tube back into Lilly to help her drain the fluid that was around her left lung. Unfortunately when they did this it caused her right upper lung to collapse. The doctor assured us that over the next 24 to 48 hours they would do treatments to help that lung open back up. As of this am some of the upper portion of the right lung had opened back up. Yesterday evening the nurse went to check the chest tube and heard a pop sound. Lilly’s heart rate went through the roof and she turned beat red and started screaming (we can’t hear her cry but can see it on her face). The nurse noticed the tube started to drain again which means the pop sound was a clot that was blocking drainage from the tube. Lilly calmed a little when I started talking to her and rubbing her head. She received pain meds that really calmed her down. It was so sad. The good news is of this am x-rays a lot of the fluid has drained from her lungs.
Change of Diet:
Since Lilly had a lot of fluid around the lungs they feared it was fatty liquid. The test came back positive so Lilly is not able to take breast milk anymore for 6 to 12 weeks. She has to be on a low-fat or non-fat formula. Apparently this formula is very yucky tasting. Good thing Lilly gets it through the nose and doesn’t have to taste it.
Surgery:
As mentioned yesterday we have to have a central IV line surgically placed so we can give Lilly her heart medicine. After waiting all day to see if the cardiac surgeon could place the line he said he was not able to. We will be taking Lilly in for the surgery tomorrow with a general surgeon instead. We don’t know where the line will be placed. We hate to send Lilly back to the OR.
We have noticed today that Lilly seems to be more awake. She is opening her eyes and looking around. What a special gift it is when we get to see her pretty eyes and visit with her. Thank again for everything.

P.S. After 7 days apart… I finally got to hold my sweet baby Lilly!!!!!

September 9th
Lilly had her third surgery this morning. This surgery was to place a broviac line her upper right chest area. This centerline will help us to be able to administer medicine for Lilly’s heart and it is also used for blood draws. The great part about this line is that is can stay in her body for a longer period of time.

As we walked with Lilly to surgery she was sucking on her ventilator tube really loud. It made us all smile because she kept looking at us like where are we going and what’s for lunch. This sweet moment made going to surgery a little less tearful because we had something to laugh about. Lilly is now recovering from surgery. Her heart rate was a little high for a small period of time but after pain medicine she seems to be resting comfortably. (While continuing to suck on her ventilator tube) Don’t worry she will get some “lunch” in about 5 minutes and won’t be so hungry. For now we are going to let her rest the remainder of the day.

I got to play a little with Lilly today. We played dress up with her new bows. Notice we had a purple bow on her at the time of the picture. Thanks for your support and prayers.