Adventure Time- Tuesday Afternoon to Thursday Night

Tuesday (Post-op, Day 1):

They let us feed Lu a bottle on Tuesday afternoon. Before surgery, she had a hard time eating. She would normally eat about 1-2 oz. at a time so we had a lot of difficulty getting her to gain weight. Not only did she have reflux but eating with a hole in your heart is painful and exhausting. Only 1 day after her surgery, she ate 2 ounces of Pedialyte around 1pm, 2 oz. of formula around 2pm, and 4 ounces of formula around 6pm. This was amazing for everyone to see since she had never eaten that much and she had a serious operation the day before. She continued to eat well for the rest of the night.

I also got to hold her. I was so surprised and excited when they said I could do that. Lu didn't seem to mind it either. She went right to sleep and was still and quiet for the first time since her operation. It was a truely amazing feeling.

It looks like I am holding her but she is really holding me.

Lu got to hold Yaya too.

 She was still pretty groggy from the morphine that she was getting every few hours but as they started weening her off the pain meds, she started getting a little playful but you could tell she was very out of it. They would take her on and off the oxygen, depending how her O2 saturation levels. They took the her arterial line, in her wrist, out and removed the Cerebral Oximetry Monitor patch off her head so she looked a less "hooked up." They also removed her restraints. 

That night, Matt's parents went to the hotel and Matt went to the Ronald Mcdonald House while I stayed with Lu. She did pretty good during the night. She tossed around and whined a little bit and got up to eat a few times but was pretty calm. Overall, Lu's progress was pleasantly surprising. I went to bed pretty late and didn't sleep much, not from worry, but from excitement to see what kind of progress the next day would hold.

Wednesday (Post-op, Day 2):

At 5am, Lu got a chest x-ray, which really upset her. She had become very weary of anyone unfamiliar, especially if they came near her and touched her. I guess having so many people causing her physical pain was confusing. She is just too young to understand that they are helping her to get healthy. The look she would give me, when she was scared, made me want to cry. It was like she was trying to get me to help her, even if they were just checking things without hurting her. I know most mothers would take their child's place in those situations, if given the chance. I was always the kind of mom that recognized that a child needed to learn how to cope but at those moments, I would have taken her pain times infinity for the rest of my life, if she could have had just one minute without pain.

A few people from physical therapy and occupational therapy came to play with her and move her around. One of the goals for that was to make her comfortable and ease her anxiety about strangers and after a little while, she seemed to ease up and be more welcoming to people. The fact that she was being poked and prodded less and less, over time, had something to do with that too.

Wednesday was a good day. Lu was starting to look less swollen and would stay awake for longer periods of time without seeming uncomfortable. She was getting pain meds less often and eventually they switched her to Tylenol. She played a little bit and watched Handy Manny on TV but she was still a little uncomfortable at some times and was not very vocal or smiley. Her throat was a little sore from the having the breathing tube on Monday so that, and the pain meds, might have been the cause for her silence.

They removed the chest tube and the CVL (the line in her central vessel in her neck). This was great because not only was the chest tube pretty big and uncomftable, but it was draining into a clear tube and emptied into a large measuring device at the end of the bed. The CVL was also very large. It was held in her neck with stitches and about 3 or 4 IVs were hoked into it. It was very hard to move her and got tangled up a lot with the other wires on her body. They took another chest x-ray after they removed the tube to see if any air got sucked in through the chest tube wound during the removal. The results of the x-ray looked good. This was relieving because if there had been air, they would have had to re-tube her. The wound was bandaged and she seemed much more comfortable after that. It was also easier to hold her without all the extra stuff. 

Bye Bye Chest Tube

They took her off a few meds and all IV fluids so she began taking her meds orally. After that, she had nothing going through her IV ports. Two IV ports remained, one in her hand and one in her foot, so that they could collect blood and administer something through the IV if needed. Everyone, including Lu, was very happy. After every removal of a piece of equipment, her body got a little less cluttered and our hopes for her speedy recovery increased. This also allowed us to give her a sponge bath, which she did not like. It is way to cold in a hospital for a sponge bath but she got all cleaned up and dressed in some pretty PJs which made her happier in the long run. 

Paging Doctor Lu

That night, Matt's parents went back to Melbourne and it was my turn to sleep at the Ronald Mcdonald house. I wanted to stay but I needed some sleep and I knew she was in good hands with Daddy taking care of her.


Thursday (Post-op, Day 3):

In the morning, I had a nice walk to the hospital. It was very wet and cloudy out but the air felt good. I had been having severe headaches, back pain, and an earache so I figured I needed some exercise and fresh air. 

When I walked in, Matt was standing at Lu's bedside while she played and watched TV in her bouncy seat. I greeted Lu and she gave me a huge smile. I didn't know then, but her smile was just the beginning to a great day. As I scrubbed in, Matt told me that she had just eaten a bottle and a jar of sweet potatoes. He also told me that they removed her IV in her foot and she was scheduled for an echo. If the results were good, she could be discharged the next day. It was great news to hear and suddenly my aches and pains went away. 


She played and smiled and talked all day. She was, pretty much, back to the normal, happy, and spirited Little Lu. As the hours passed, and her stats remained good, the positivity in the room peaked. We had a new, more normal, feeding and sleeping routine and Lu was happy to be around Matt and I all day. We hung out and read, watched TV, talked, and played. It was a day we were not expecting for at least a week. Lu's strength amazes everyone each day and her character seems to put everything into perspective. 

I can sit up by myself!

My favorite toy, Mrs. Crabby McCrabberson III

After the echo, they removed her pacing wires. They also ordered another limited echo for Friday morning. We will get the official results by mid morning but the nurse read the first echo report to us and it said something about regurgitation and enlargement of some sort. We are not sure about what this means so we are not sure if it is normal or not. 

Right now, it's about midnight and Lu is sound asleep. Her heart rate is a little low, but not bad, and everything else looks good. The decrease could just be because she is in a deep sleep but I are going to bring it up to the doctors tomorrow.


I've got about an hour before I have to wake her up to feed her. Funny how something that was difficult before is something I know look forward to. It is something new to me, that she actually likes to eat, and I will never take that for granted.

Don't Worry, Be Happy :)