Natalie's Heart Story Part 2

Natalie's surgery day, September 9th 

from 7-2:30

 The surgey did not take as long as I thought it would. We started off our morning early. My dad made us a really nice breakfast and then we headed out at 5:30 am to beat morning rush hour and made to PSL by 6:00am. They took Natalie to the OR at 7:00 where they put her under anesthesia and prepped her for surgery. I am very thankful they don't let you see the prep work. During those hours, Brandon, my mom, and I busied ourselves. My mom had her Soduku, I had my coloring book, and Brandon was reading the Hunger Games. When we got hungry, we explored the already familiar halls and scavenged for food. Every 2 hours we got an update from Dr. Leonards Nurse practitioner. I handled the wait well and was very confident. She received a blessing from Brandon and our Bishop a day earlier. The calm we all felt was reassuring and I knew my Heavenly Father had heard us.  Everything went well through the procedure except for once small hole they could not completely seal off. Dr Leonard said that she will have a heart murmur, but that it is nothing to worry about. As soon as they got her into room 6, they let Brandon, my mom and I see her for a few quick minutes. When we walked in people were buzzing everywhere. It felt like an out of body experience. Nobody really acknowledged us. I felt like I was in the way and stepped aside. Then the respiratory team rushed in and quickly told us that they needed to adjust her intubation tube. The next thing I know they are shoving it further down her throat and talking about it being in the right place yet or not. I couldn't handle it. I got so upset and mad, that I stormed out of the room. I could not stay much longer after that. Everyone in the room talked about her being unstable and because I did not know all of the terms that were flying around and the process of stabilizing after surgery, I felt it best that I should just wait. 

 Pictures above are right after surgery.

Later that night I returned with my mom. We got to see Natalie open her eyes for a few seconds and then close them. The poor little thing was heavily sedated and tired.

 The many days fallowing her surgery were very slow.  It was a lot of sitting and waiting. I could not do much to take care of her at first, so we took every little improvement with excitement. First was getting rid of the intubation tube. There were many times she loved sucking on it, but once the anesthesia wore off, you could see it annoying her. She would act like she was choking and would wince. I so wanted to pull it out for her.
Below is the 13th of July when they removed her intubation tube. I was so excited to see her sweet little face!

Starting to see less wires!

July 14th, first day in her new room! No more head thermometers.

After she was moved to the new room, the doctors began to talk about possible discharge dates. Brandon and I began to get our hopes up that we would be taking her home by the end of the week. They took out her abdomen drain, but her chest drain was still putting out fluid. They started to talk to Brandon and I about a possible Chylous Effusion (chylothorax). The best way Mayapan described it, was very small lymphatic vessels that no one can see somehow got injured during surgery. He said they would know for sure if she has it by feeding her my breast milk with High Fatty food. If the drainage tube shows a cloudy sticky substance then she has a chylous effusion. At this point she was still getting TPN through and IV and lipids for fat. 

July 15th

July 15th

    On the 16th, they allowed us to feed her breast milk. I was so excited and nervous. Dr Leonard said that we would notice a difference in her discharge quickly. He checked in on Natalie a few hours after she ate, and noticed that her drainage was still clear. He was excited as well as I. Unfortunately, that excitement was short lived. I walked in the next morning and was told by a nurse and a doctor that things had become worse over night. Her chest drain was draining a white sticky substance and that she would have to stay for another two weeks in the hospital. Brandon and I went home that night frustrated and upset. We had Natalie get another blessing from our home teacher and began our wait again. 

    The 17th was not a fun day as well. This time my mom and I were informed that she would need a PIC line. Her RA line (right arterial line) was no longer working and her umbilical line was near the end of it's life. The best way to meet Natalies needs was by placing a PIC line. We were also told that the new IV line in the side of her head was common on babies. However, the IV line in her head was not working the way they wanted it too. A little frustrated, we waited all day until about 4ish in the afternoon. Her PIC line had to be placed in the OR. This once again meant anesthesia and a short time on an intubation tube. My mom and I were told it could take 2 to 3 hours for the procedure to be done. When we entered our 4th hour I began to panic. When she returned to her room the doctor told us that they could not get the PIC line to go through a vein in her arm, so they took that one out and went in through her neck. They had successfully got into the right area, but not in the exact place they wanted. I was also informed that it would not draw blood. Wasn't this the whole reason for the procedure? I honestly did not know what to think. Everyday felt like tiny steps forwards and backwards. Emotionally I was not prepared. I remember begging my mom to stay longer in front of the Doctor. I had begun crying every day and felt overwhelmed. Finally it took one of the Pediatric doctors Mayappan to help me see the light. He kindly took me aside told me that I could get help if I needed. I knew exactly what he meant and a day later after cooling down I called my OB office and started on Lexapro as soon as I could. 

    The 18th was happy and huge milestone. Natalie's chest tube came out!!!! Also the IV in her head wasn't working so they took it out! Things began to look brighter again and our hopes soared once again. Maybe Natalie would be home by the end of this week. On the 19th and 20th we enjoyed feeding and cuddling Natalie before Nana had to go home.   

19th enjoying a  yummy bottle of Tolerex.(which smelt like rotten french frie oil)

On the 22nd I got a call in the morning that her PIC line was out. The nurse said that Natalie began to leak Lipids from the PIC line dressing. They thought that maybe they needed to reapply a new one. Instead they found the line completely out and curled under the dressing.  They seemed very baffled by this event, which made me laugh, because the odds seems to be in Natalie's favor. I showed up to a new IV line in her foot. As for the blood gas tests, they could still draw from her RA line.

The NICU nurses made this for Natalie and brought it down to the PICU after her surgery.

It was a weird feeling seeing her in the baby crib instead of a NICU bed, but at the same time it felt like we were getting closer to the goal line.