A lot has happened with Miss Lilly this past weekend.

Friday:
On Friday morning Lilly had a CT scan. During the scan they looked at Lilly’s heart, lungs, kidneys, liver, and stomach. Lilly appears to have some fluid in her tummy, there is fluid around her heart, her lungs looked good, her liver still has the blood blister but appears to be the same size as in the previous scans. They became concerned when they saw a mass in Lilly’s left kidney. (This is her good kidney) The mass appears to be either a cyst or a fungi ball. They took blood cultures to see if it is really a fungi ball. The doctor believes it is a cyst and is waiting for official results for the radiologist. Lilly is becoming very accustomed to these medical procedures and feel she can perform her own procedures. Dr. Nigro said he wanted the chest tube removed on Saturday morning. Lilly decided she was done with the chest tube and removed it herself an hour after the doctor left on Friday evening. When the nurse went to change Lilly’s diaper she noticed the chest tube had slide out and was by the diaper. This caused a great alarm but thankfully the chest x-rays came back OK. We are happy to report that Lilly won best chest x-ray on Friday.

Saturday
Lilly looked so beautiful on Saturday. She had a round face, great color, and she seemed at peace. It was great to hear the nurse say that we were having a great day. We don’t hear those words very often so when we hear them we do the happy dance.

Sunday
It is one step forward and two steps back. Lilly threw-up on Sunday afternoon. This caused Lilly to choke and drop her heart and oxygen rates. Once again they had to “bag” Lilly to help her get oxygen. Since she threw up they stopped her formula again to give her tummy a rest. Even though she had a little incident in the afternoon she looked great by evening time. All evening Lilly held my finger. I would talk to her and she would make those cute baby faces at me. At one time it looked like she was smiling. What a sweet moment. I loved seeing her awake and trying to interact with me.

Monday
When I called at 3am this morning I got the distributing news that Lilly had dropped her heart rate and oxygen levels again requiring the poor nurse to “bag” her. My heart sank that was twice in 24 hours. Lilly had decided she only wants to lie on her left side. When the nurse tried to lay her on her right side Lilly had a melt down and this caused her to get into trouble with the oxygen and heart rates. We are trying to figure out why she does not want to be on the right side. We need to keep rotating her so she doesn’t get stiff muscles and her head shape doesn’t get deformed. They have decided to start feeding Lilly again which is good news but a little nerve racking that she might throw up again.

It is hard to believe that sweet Lilly is a month old. Thank for supporting our family during this trial.