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.

Natalie, Our Heart Baby's Story part 1

When I think about writing Natalies story, I get overwhelmed with the thoughts, emotions, and knowledge that was packed into those 41 days. However, if I do not write them down now, I may forget the memories all together.

Our adventure started July 2nd at 8:20 pm. We headed to PSL (Presbyterian Saint Lukes Hospital) excited, scared and clueless. I realize now, that some things in life you just can't prepare for. Neither Brandon or I, knew how we would react to our babies situation. We arrived 10 minutes after 9pm and could only get access through the emergency doors. Everything after that became a little slow.  However, the nurse practitioner told me that my body was already having small contractions on its own, and that they would start cytotec at 2:00 am. She joked that if she had started at 10:00 that most likely Natalie would come before the doctors would want her here. The later time would insure her delivery for noon the next day, but of course no guarantee. Until then we nestled in and watched many hours of Gilmore Girls!

I finally began to fall alseep (or so it felt) around 12:00 am and then automatically woke up before 2:00. Soon to fallow was the nurse with the fun little white pills. Then next came the Pitocine and after that came the rush of contractions. Around 5:00 am I begged for my epidural which gave me much needed relief. The guy who did it was amazing. I'm usually shaking and freaked out of my mind. He talked me through the whole process while talking about other things to ease our minds. After that, labor was breeze. At one point they thought I was having heavy contractions and realized that Natalie was moving a ton making it hard for the fetal monitors to read her vitals. So the Doctor Oliver Jones himself came in broke my water and threaded internal monitors on Natalies head. Around 10:30 am, I began to feel major pressure and an urge to bear down. I told the nurse I needed to poop which signaled right away "It's time!" After that, the room flooded with an audience of people. I can't even tell you who all of them were. There were the nurses and doctors for me, as well as the team for natalie, plus the undergrads experiencing a TGA birth for the first time. I seriously felt like I was on display. The plus side was I had a great cheer team. As I began to push Natalie would not stop wiggling. The nurses and doctor could see her head twisting around making it hard for me to push her out. At one point Dr. Jones sat down in a chair over by a wall and just acted like he was taking a break. I looked at one of nurses and said (in a voice Dr. Jones could hear) "is that an incentive for me to push harder?" she laughed and said "lets show him what we are made of." I then pushed as hard as I could and with a look of surprise on his face he jumped up and came to catch our little pumpkin. 

I only got to hold Natalie for about 5 minutes. When they first handed her to me I said "look a little Riley, wait this is Natalie." It was surreal, and she was so blue. I knew in a matter of minutes she would be leaving to the NICU.

See, she did have a Major cone head! This did not happen with my other two.

Born 7/3/14 at 11:31

9lbs. 9oz 20.5 inches long

They spent a little time getting her details and cleaning her up enough for transport. I got to look over and see her and Brandon head off to the next journey. Brandon's eyes were full of tears and I kept up a good face for as long as I could. Once they were gone, and my doctor had finished, that's when my mood changed. First the anesthesia started to wear off making me shake uncontrollably (my first time experiencing that) and then I began to cry. A nurse came in and told me to take more cytotec because I was bleeding like a sieve.  My Placenta was huge and I guess natalies umbilical cord was too big. They asked me if I wanted to keep it because it was so thick. I gladly told them no!

As I was recovering and waiting for my body parts regain control, Brandon got to watch the balloon procedure (balloon atrial septostomy) they did on Natalies heart. 

By 5:00 pm I finally had full function of my legs. When my parents showed up with the kids we headed to the NICU to visit Natalie. She was still recovering from her procedure. It was hard because I really wanted to hold her, but she was intubated and still under anesthesia. I of course began to sob again. All I wanted to do was hold and comfort my little angle.
July 4th was a much better day. We got to hold our sweet baby girl. Of course we had to be careful because she had an IV line in her umbilical cord. If pulled out she could have bled to death. Comforting hu? The 4th is usually my favorite time of the year, I was sad to spend it in the hospital, but glad that they let Brandon and I watch fireworks from a conference room at the top of the building.

July 4th in the NICU

July 4th in the NICU

July 4th in the NICU

July 6th in NICU with Riley

July 6th in the NICU

July 6th in the NICU

This Elephant is now chalk full of little notes from doctors and nurses who have cared for Natalie. My mom found it at St.Vincents and bought it for Natalie. Brandon and I loved the idea!

Day 7 in the NICU.

Day 9 in the NICU before surgery

The wait in the NICU felt  very long. We enjoyed the time we had bonding with Natalie. She was taking 90 milliliters of breast milk. She had the kindest nurses and one of them was Melodie. Melodie loved on Natalie as if she were her own granddaughter. She also put Brandon and I at ease. The night before Natalies surgery I began to fall apart. The whole time she was in the NICU I acted very enthusiastic and happy. The day of her surgery was hard. When the team came in to talk to me I fell apart. Dr. Leonard presented us with a willow figurine holding a gold heart. I clutched that figurine like I was holding onto to Natalies life. Melodie hugged me and just let me cry. As usual I began to apologize for my crying. Then Melodie looked at me and said "stop apologizing your hores are moaning." Brandon and I started laughing. She always knew how to lighten the mood.

Lorelei, missed wearing her Easter dress on Easter a while back. These pictures are for Nana who wanted to see her in her dress! We have a knack for getting sick during important events lately.

 Lately, Lolli has been saying the funniest things. Her latest has been "My pardons my princess." She'll come up to me and say this as she curtsy's. It took me a few times to realize what she was doing. It totally made me laugh. I also know that I posted this in facebook, but I need to put it here as well. 

A morning conversation between Lolli and Bo.

Lolli "can I have a small puppy?"

Brandon " well, your getting a baby sister instead."

Lolli "Okay, next time make it a puppy." 

 Lolli has also reverted back to baby talk. She knows that another little girl is joining us soon and it's putting her through a loop. There are days where she says the baby is hers and other days where she is the baby.

Her favorite thing to do everyday is choose her outfit. Most of the time she wants to wear a dress. Occasionally, she'll pick a shirt and pants. Of course they never match, which drives me nuts, but I am beginning to let that go. Sometimes I'll try to make a couple of outfits for her to choose from. This usually appeases her. We definitely live in a girly world with her. 

Game Day!

Brandon and I grew up in a state where the major leagues really don't exist. Now that we are in Denver, Brandon and Riley decided to take advantage of the season to watch the Rockies play the Dodgers. Of course they had nosebleed seats, but they had a blast non the less. I'm glad they got a day to bond!

Pre-K Graduation!

We are back tracking a little, because I need to post Riley's graduation! May 20th was his last day in Mrs. Morris's class. Riley loved Mrs. Morris. Every week he would ask me what day was Tuesday and Thursday so he could go to school. His favorite things were show and tell, snack time, and learning the sounds of the alphabet. He asks me constantly how to spell things and has begun to read. One night I spelled out ice cream to Brandon and Riley said "I want ice cream!" It's a sad day when spelling things out no longer works. Another thing Riley loves is numbers. When he draws everything it's either a word, shape, number, or arrows. I can't wait to see how he does in Kindergarten!

 Riley made Mrs. Morris a bouquet of flowers as a thank you.

 The short walk to the ceremony.

(from left to right) Madison, Riley, McKenzie, Violet, Josh,  and Olivia

 Riley's whole entire class except for Olivia who was blocked by a dad.

 Receiving his certificate

 Getting to throw his hat!

Showing off his progress report, while sporting chocolate and frosting all over his mouth.

Below, are pictures his teacher took over the course of the year. I love that she made each of them an album. It gave us a little glimpse into his year. 

 Riley also learned how to cut paper. He REALLY enjoys cutting paper and I can't get him to stop. Some pictures and important papers have fallen victim to this new found hobby.

Every day Riley would act like getting to school was a race. Below in the picture you can see their to do chart. Riley, always wanted to get the first pick. He would always run out of the van saying "I won, were the first ones here!" After that and few times of him plowing over Josh, I started to show up a little later to give other kids a chance. He did not like it much in the beginning, but then he learned to adjust and share with others.

Now that school is out, Riley is constantly asking me if he can play school. I tell him, "sure you and lolli can play school all you want," he then turns to me and says, "but you have to be the teacher!" I guess it's time to crack open the summer work books and frequent trips to the library. 

Emotions running high!

 We are exactly 3 weeks away from meeting Natalie and emotions are starting to enhance. We realize that a lot of people have no clue what emotions are present in this situation. Actually, a lot of people down play it and act as if it's just doesn't exist in our life. I am thankful for my immediate family, and the medical team who say we would not be human if we didn't have the feelings we are going through. The support I have felt from my family and perfect strangers has been incredible. I find people who don't know you seem to be more compassionate and giving. I hope through this experience, that Brandon and I can pay it forward to others who face hard situations. We have faith, but with that faith still comes anxiety and fears. 

35 weeks!

During this pregnancy my grandpa's health had begun to decline. I joked in the beginning that he would most likely pass as soon as I had my baby. Really, I was hoping it would not happen until I could travel again. However, life throws some interesting curve balls.  Over the memorial day weekend he passed away. I was happy for him to go. His life had become prison bound on this earth. He could no longer remember anyone, do anything, and began to starve himself. It was hard to hear the updates, but even harder knowing I could not attend his funeral. He is my favorite Grandpa and the only one I really knew on this earth. He had a way at making girls feel special. Everywhere we went, he flirted with someone. He always told us granddaughters that we were beautiful and gave us huge hugs. He loved taking us out for ice cream, sharing cans of Pepsi, outings to the zoo and enjoyed going to the park with us. I will miss this big teddy bear, but I know it is not the end. I am glad he is now in a place where he can support and be one of the many angles fighting for us on the other side. I love you Grandpa!

 During all of this I realized that both my Grandma and Grandpa passed while I have been pregnant. My Grandma passed when I was 3 months pregnant with Riley and now my Grandpa at 34 weeks with Natalie. 

After grieving for my grandpa Brandon and I got to celebrate our 8th Anniversary on June 3rd. Actually, we started to celebrate it over the weekend, because the 3rd was a Tuesday night. That and with everything coming to head we decided to keep it simple. With no fun trips this summer and a new baby on the way we decided to play hookey. We skipped church on Sunday and went to a splash pad and a much needed trip to the Rheinlander Bakery. We had a blast!

My favorite part of this story was getting caught by our home teachers. Brandon and I had forgotten that we set up an appointment with them. When we got home they were still chatting in our driveway. It was a classic moment. We touched base with them and told them why we were playing Hookey. Brother Jacob graciously offered to for him and his wife to take our kids Tuesday night. With that being presented Brandon made big plans to take us to the Melting Pot for our outing. We were so excited until we got a message that brother Jacobs wife ended up in the ER from fainting. Understanding the situation Brandon and I cancelled our night to the melting pot. Instead we packed up the kids and headed to Tucanos. The night was a success! For the first time in our lives the kids behaved at a restaurant. It was the perfect Anniversary gift! We ended the night with a run to Sonics for half off shakes. Which made me one happy wife and mother. Did you know that they put nerds in shakes for you? Well, they do, and Brandon and I have been on cloud nine since. 

I love Brandon with all my heart. This year has been quite trying and we have seen sides of each other and learned things about each other that have brought us closer. Happy Aniversary, new year, new baby, and happy family moments! I love my little family!