Halloween in pictures!!!

For Halloween we made yummy food, carved pumpkins, visited a pumpkin patch, decorated and went trick or treating. 

Natalie's Story part 4

 A couple of day's had past since they put in Natalie's chest tube. Dr Williams and Butler began to mull around the idea that she might have to undergo procedure that creates scar tissue in the plural space of the lungs so that no more chyle could build up. Dr. Butler was hoping that the scheduled date (the 8th of August) would be canceled and that she would not have to undergo it. Nervous and scared I tried to put this information in the back of my mind. 

Riley's first day of school was quickly approaching. I did not want to be a kill joy on his exciting first day. His teacher allowed each of the students to bring their favorite comfort animal to accompany them. Riley loves Zebras, and has been attached to the one daddy got him at the zoo. Once we arrived, Riley was full of energy. I could not get a decent picture at the school to save my life. With that said, parting was not sweet sorrow. He marched into the school with no glances back or a "I'll miss you mom."  I surprisingly did not shed a tear. All of these moms were wiping tears out from under their sun glasses and all I could think was "this is a peace of cake compared to what our Natalie has been facing." My perspective was from a total different angle. I'll most likely cry on the last day of school because it ends a mile stone and means more change is on the way.

 During this whole week they did Oxygen tests on Natalie. The tubes would be in, then they would be out. Doctor Leonard believed that the nurses and Ped doctors were being overly cautious. In all actuality we live at a very high altitude and if all babies were monitored after birth they would most likely all be on oxygen too.  I love Leonard and Brescia. They were the most positive and optimistic out of all the doctors we had. They pushed for encouragement and set the goals high. They were our biggest advocates and I held onto their nuggets of wisdom like it was gold.

The picture below was a turning point for us. I remember driving to the hospital with a lump in my stomach. I was preparing for the worst to happen that Friday. All I did that day was hold onto my sweet baby. One of the spunkiest nurses Susan got to take care of her on this day. She took a picture of the two of us and I'm glad she did. I held Natalie and told her to fight hard and that we needed her home. I said little prayers over and over as cuddled her sweet little body.

When it was time for me to head home I stepped out and saw the most vibrant thick colored rainbow. A sense of peace washed over me. I realized in that instant that my Heavenly Father heard my prayers and that things were about to change.

 The next day I was greeted with joyous news that Natalie's x-rays were looking better according to Dr. Leonard. Of course Williams was a pessimist this day and told us that most likely she would still have the procedure. I of course bit off his head and told him "why, what if the procedure does not work. This is not fair to her." Luckily Thursday became even brighter, and the doctors decided to cancel the procedure and give her a chance to prove herself, and she did! Sunday they started the preparations to send her home the next day!

Monday was so exciting for Brandon and I. We finally got to take home our little angle. It was a little sad leaving our nurse friends, but so thankful that we no longer had to make the tiring drives back and forth. No more needles, procedures, restrictions, bored siblings and no privacy. We were finally going HOME!!!!!!!!!!!

 Once we arrived home Natalie was wide awake. She did not sleep more than a wink at a time. She was so interested in her new surroundings and for the first time her siblings actually felt like she was their baby sister!

 I am happy to say that we are still on cloud nine having her home. We are happier than we have ever been, This experience stretched us in so many different ways. Yes, we still have our ups and downs, but the reality of what we have been through keeps us grounded and reminds us that time and life is borrowed. 

Natalie's story part 3

On the 23rd of July, my sister Mindy and her Boyfriend Tim (who we got to meet for the first time) came to help out with the kids for three days. The kids took an instant liking to Tim and I think Lorelei had a little bit of a crush on him. Every time they came to the hospital Riley and Lorelei would beg Tim to go on a walk with him. Unfortunately, Tim put too much faith in them and they ended up taking an elevator to a meeting floor where people were having a meeting. He pleaded the 5th and realized my kids had no clue where they were going.

 During the time of Mindy and Tim's visit, the doctors came back to us with more disheartening news. Doctor Butler informed us that water was accumulating in her lungs once again. We were back at the waiting game.

 Mindy and Tim had to leave July 26th in the morning, but luckily was closely fallowed by Grandma Shelley arriving. We knew we were in for another couple of hard weeks and were grateful for the extra help and support.

On Sunday the 27th a Lady who specializes in placing PIC lines on the PICU floor was present and available. She was able to place a working PIC line through Natalie's thigh in one hour. I could not believe it. I asked the doctor why they did not have her do it in the first place. Her response was that the Lady only works on the weekends and the first PIC line was done during the week day. They used to have someone during the week, but they had moved and did not yet have a replacement.  I understood the situation, but could still feel my pent up feelings yet again surmounting.

During this time I had put Riley's first day of school on the back burner. I thought I still had a couple of weeks before I had to worry about school supplies and his first day. That night I checked my e-mail and the harsh reality was revealed. I learned that that Thursday I needed to turn in his supplies. I went into freak out mode once again. When Shelley offered to go get the supplies a huge burden was lifted off my shoulders. It seems like such a little thing now, but in the moment it was more than I could handle.

While Grandma Shelley was entertaining the kiddo's, keeping us fed, and the house in check, Brandon and I were dealing with the latest situation with Natalie. Dr. Butler informed us on the 30th (a Wednesday) that she needed to insert a new chest drain to release the fluid in her lungs. They were afraid of her getting an infection. This was the day where my surmounting emotions imploded. Brandon and I were told to wait in the waiting room. The procedure seemed like it took FOREVER. It felt longer than her operation. The stress of all the poking, prodding, and hurt began to grate on my nerves. I began to panic and rushed into the NICU to ask about Natalie when doctor Butler walked out of her room. She informed me that they were done and that I could go in. My heart sank as I looked at the chest tube Meter on the floor. I also felt hopeless as the nurses were helping her. The anesthesia was still wearing off. I also noticed that she began to have a harder time coming off the anesthesia than she did before. She would cry out in pain and I could tell she was sore. The nurses hardly acknowledged our presence or how we were feeling. I turned to doctor Butler (already knowing the answer) and asked "does this mean we will not get to care for her as much as we were able too?" Doctor Butler began to answer but was cut off by a nurse who said "It's best if you leave it to us to get her in and out of her bed for now." Her comment completely threw me over the edge. I lashed back and said "Do you guys not understand what we parents are going through? I have not been able to take my baby home at all. I have not been able to care for her like a mother should. I asked Doctor Butler a question, not you!" Of course everyone in the hall and the front desk heard me. I was sobbing, Brandon was sobbing, and I felt awful for ripping into this sweet nurse. 

Luckily, the Lead Nurse Kari, knew me well enough and came in to comfort and hug me. She told me that when her kids had surgery she acted the same way and that I was not the first parent to fall apart. They actually said that Brandon and I had been the most pleasant people they have had to deal with After Kari boosted us up I asked to cuddle and hold my sweet little angel.

The next day Brandon and I went in to find the goal on Natalie's board changed to 

1.Increase feeds

2. Wean off oxygen 

3.Give more parent support

After a night's rest Brandon and I found the last goal hilarious and thoughtful. 

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.