Gratitude

There are so many people that have helped us through this experience. We are so humbled at the love and kindness everyone has shown our family. It is truly crazy to think of all that others have done. I need serious lessons in being more thoughtful and doing service for others. While in Salt Lake we stayed at Kody's aunt and uncle's house. They fed us so much food! They sent us meals to the hospital along with snacks and drinks daily. They drove me to the hospital when Kody and I were trading off nights. They were so great to us. My mom, dad, stepmom and aunts all took days off work to be there with us in the hospital. Kody's parents watched our kids back home, making things easier for us. My sister Kim and cousin Talia also helped with my kids.  We have had meals every night from neighbors, friends, family, and even one of my sweet little Kindergarten student's family, the Ross'. We have had gift cards for meals, cookies, bread, cokes, treats, etc. brought over.  My sweet friend, Martene cleaned my house when she heard we were coming home! Yes, that's right! She sterilized the whole place! And left us masks for visitors to wear so Maverick doesn't get sick. Andrew Lathrop and the young men in our ward fasted for Mav and then made a sign on our garage for our homecoming.  I am still in shock over the kindness people have shown us. I am truly speechless. I will NEVER forget the kindness and love we have felt. There are truly no words that can express how I feel inside. So I'll just say

THANK YOU!!!

I have had a lot of people say I have been strong through all this. Really, and truly, I haven't. I have been the BIGGEST baby ever. But, I have found ways to get through. It's called stealing from other people. I have stolen strength and faith from others left and right. Most of the people I have stolen from have been through unimaginable trials. Maverick's surgery was a walk in the park compared to what these mom's have been through. Whether they know it or not, I use their strength every day. When I get the poor me's I remember what others have been through and are still going through. One of the mom's I'm talking about is Kylee Kupfer Low. I have known Kylee a long time. Her older sister Sadie, is my good friend. Kylee's son Clutch, was born exactly one month before Maverick. He returned to Heavenly Father that same day. I think of her daily. I am in awe of how she has handled such unimaginable loss with such grace. I want to be as strong as she is when I grow up. Her attitude and testimony are AMAZING. Here is her story.

I also have stolen strength from another heart mom. Her name is Alena Hardy and her son Trey has Hypoplastic Left Heart Syndrome. He is such a fighter! He has had two open heart surgeries already. She has been so great to answer questions for me and share her story. We were going to get together at Primary Children's on Monday but we got released early. Thank you Kristy Hodson Robinson for introducing her to me.

It's been a little rough since we got home. Maverick has good days and bad days. He seems so happy and smiling one minute and then crying out the next. I know he is in pain sometimes and it is so sad. He has a hard time at night. I give him his pain meds but he still cries out in his sleep. He had a few rough nights and then a few good nights. But yesterday and today have been tough. He is sleeping now which is the only break I get. I took him to the doc on Wednesday. His chest is healing well. It can take months for his sternum to heal all the way. The skin on his chest is looking so good. He is eating and pooping. Those are good signs. I take him on Thursday for an EKG, chest Xray, and Echocardiogram. He will see Dr. Etheridge from Primary Children's. She will remove his stitches where the chest tube was. Hopefully he will have gained weight and his heart will be squeezing better. When we left the hospital his echo showed that his heart wasn't squeezing at the bottom as tightly as they want. They put him on a new heart medication to try and help it. Hopefully we can be off all meds some day. He really is looking SO good. I can't complain because it could be so much worse. His sleeping will hopefully improve so I can function during the day. He turned 8 months old yesterday! I am so happy that the surgery is behind us and we can start healing. Here are a million pictures of the surgery. 

Last chest pic before the surgery

Survival Kit from Nicole

Nicole made this bag. Cutest EVER!!!

Blanket made by Melanie Harris

Nicole DeMille made this sock monkey too!

Before surgery

Cardiac Intensive Care Unit

First time holding him. Day 2

Moving out of CICU

     

Maverick and my mom

Getting an echo on day 3

First smile 3:00AM

My mom and her sisters

Daddy and Mav




After his first bath

Bandage off

Our cute welcome home sign


Mav sucked his thumb so hard in the hospital he got a blister

First bath at home

Surgery Day

Monday was my last day at work. It was a rough day. It was hard to say goodbye to all my little kinder stars for awhile. My sweet friends at work Alecia Ross, Jadie Petersen, Mel Harris, Kim Almond (and Laura Albrecht) did the most amazing thing. They all went in on a "Survival Kit." It was out of control thoughtful and kind. It had so many things one would need to survive the hospital. Treats, drinks, books, magazines, earplugs, bathroom kits for men and women, a blanket that Mel Harris made, gift cards to restaurants that deliver to the hospital.

SO SO SO THOUGHTFUL.

 Those girls will never know how much they mean to me. That night we had a family sleep over in our room. McKoy, Mataya, Maverick, Kody and I were all together. Koy and Taya slept on the floor and Mav in his pack n play. It was nice to have all my {loves} in one room together. That night McKoy asked me something that broke my heart.

He asked if Maverick could die.

I told him Heavenly Father loves Mav and will watch over him. That while Mav's heart isn't beating that angels will be with him helping his body be strong. That the doctor will fix what is broken and that Mav will be healthy and whole again. It was an emotional night for everyone. Many of our family members came and kissed on Mav before we left. Kimi (my sister) held him while I packed. Janet and Kary (Kody's parents) brought pizza and then took Koy for an ice cream. Mataya didn't want to go. She has been being a mamas girl so they brought her one back. My mom and Richard (my step dad) came over along with Kason, Steph, and Karson (Kody's brothers and sis in law). My best friend Natalie brought a sweet gift. It was kind of everyone to show their love for our son. In the past we have had our family members or Kody give Mav blessings. Kody decided to do something different. He asked our friend and bishop Tyler Albrecht if he would give the blessing. Tyler brought his brother Scott Albrecht that lives around the corner and Vern Spencer a neighbor to give the blessing. I felt a little strange not having our family members there but it turned out nice. It was very intimate and I was able to keep my emotions in check. 

Tuesday morning we got up and sent McKoy on the bus to school. On our porch was THE CUTEST bag ever!!! My best friend since I was 4 years old, Nicole DeMille made it. She is the most talented woman ever. Inside was a survival kit with everything you can think of. Treats, drinks, a book, lotion, chapstick, downy, tide, quarters for the laundromat, and so much more. But the best part was a little sock monkey she made that has a heart sewn on it. It even made Kody cry! It was the nicest gift ever! I have the best friends ever!!! After we recovered from finding such a sweet gift on the porch we put Mataya in the car and drove to Talia's. She tended Mataya Tuesday until my mom got off work. We drove to Salt Lake and checked into the hospital at 1:00. We got Mav's paperwork filled out. His chest X-ray, and blood work were also done to prepare for surgery. They couldn't seem to get him to bleed and had to poke him in each hand and each arm. It took awhile and was super sad. Then he had to pee in a bag. We waited and he never peed so we left and drove to Kody's aunts house. We unloaded our stuff and by then Mav had peed. So we drove back to the hospital to deliver the pee. It was a long day.
That night we ate dinner and stayed at Kody's aunts. Mav couldn't eat after midnight except for clear liquids until 4:00am. I couldn't sleep most of the night. The primary song "A Child's Prayer" kept playing in my head. The words "Heavenly Father, are you really there? And do you hear and answer every child's prayer?" kept playing in my head. I tried and tried to sleep. We got up at 5:30 am Wednesday to get to the hospital by 7:00am. Surgery was scheduled to begin at 8:30am. When we got checked in Mav got baby scrubs and was happy but starving.

Many people came in and spoke with us about what was going to happen. The surgeon came in and explained the surgery. Then some nurses came in and talked with us about stuff. Finally my dad and step mom found us and came into the room. The anesthesiologist came in and took us on a walk. He showed us where we would wait and where we would receive updates. He gave us a pager and talked with us about how to use it. Then we came to the end of a hall. And we were told to say goodbye. I have to say that my mind is a dangerous place and I should not be allowed to wander in there alone. I had imagined this moment a million times in my mind. I had pictured saying goodbye to my precious angel and not ever seeing him again with a beating heart. I had pictured falling to the ground after they took my baby away overcome with grief. I had pictured anything and everything you can imagine. And I'll tell you the emotions I had imagined were spot on. I was afraid of so many things. My baby's face was covered in tears that weren't his. They were mine, Kody's, my dad's, and Shelley's. I kissed him and hugged him and then handed him over. He started to cry because a strange man was taking him away. The man walked through double doors that had a window. I could see Mav looking over the guys shoulder with his bottom lip sticking out and crying.

IT WAS HARD.

We went to the waiting room and got situated for a long wait. Every hour or so the phone would ring and they would call us to the desk for an update. Each time my heart would pound out of my chest until Kody came back with the news. The surgery went faster than expected. The surgeon came out after a few hours. He told us that Mav was a champ. That they had stopped his heart and his blood was oxygenated through bypass. That he had cut an oval shape out of the pericardium and used that tissue to fix the ASD. Then he surgically stitched up the VSD after moving the ventricular valve. The valve had grown into the VSD and was trying to fix it on its own. So it had to be removed and then put back after the fix. They did an echo down his esophagus before they closed him up. Just to make sure things were good. Then they wired his sternum closed and sewed him up. The surgeon said that as soon as they took him off bypass and his heart started beating on its own, it instantly shrunk. When he said this, my heart broke again. My little man was fighting so hard just to eat and breathe and sleep. His little heart was running a marathon everyday. I knew he had problems but to know that his little body was fighting and he was still a happy sweet boy all the time, made me feel so bad for him. Kody told the surgeon he wanted to hug him. He just saved my boys life. There are no words to say to someone you are eternally grateful for. My dad got up out of his chair and gave the surgeon a bear hug through his tears. All I could do was sit and cry. I couldn't move out of my seat. It was such relief. We got to see him at about 1:00 pm. He was in Cardiac Intensive Care. Only 2 people at a time are allowed in. You have to call on a phone in the hall and they have to beep you in. Here he is after surgery. 

 He did well and is recovering so fast. Thank you to EVERYONE

for your messages on facebook, texts, phone calls, notes, etc. We couldn't do this without all the support we have received. Thank you to our tenders back home. My mom, Kody's mom, Natalie, Talia, Kimi, and many more are helping on the home front. 

Mav has since been moved out of CICU and is now in the Children's Surgical Unit. We couldn't spend the night in the CICU but last night Kody stayed with Mav in the CSU. He has been such a great husband/dad through all this. Mav got his chest tube out today and is starting to look like my little boy. He even smiled last night for the first time.

 My mom came up yesterday and is helping up here now. Her sister JoAnna came up too and we have a lot of help. They are keeping me distracted at the hospital and loving on Mav. I'll post more pics soon. THANK YOU to everyone. But mostly to our Father in Heaven for getting us through this. 

Prayers are answered everyday. 

I'll finish with the last verse of "A Child's Prayer" - Heavenly Father, I remember now something that Jesus told disciples long ago, suffer the children to come to me, Father in prayer I'm coming now to thee. :)


(A link to  Mataya's Surgery in case you missed it 3 years ago.)

Maverick's Heart

I am going to try and post about Mav's heart so I can share a little of what our family has ahead of us.

When Maverick was 2 days old Darlene (our doc) heard a murmur. We were still in the hospital and she said she would listen to his heart again at his 1 week appointment. Sometimes babies are born with holes and they close on their own within the first few weeks. So at our next appointment she could still hear the murmur and so she wrote us an order to have an echo cardiogram. She said to give it one more week and then bring him in. So I went back and she said it was time to use the order for the echo. Maverick was maybe two weeks old. I took him to Valley View and had his echo done. They sent it to Primary Children's to be read and then I was contacted with the results. They told me Maverick had an ASD (atrial septal defect) and that I needed to be seen by a pediatric cardiologist. So I took him back in to Darlene and she said that Primary's had contacted her and it was actually an ASD and a VSD (ventricular septal defect). Mataya had a VSD and a PDA so I was a little familiar with the VSD but for some reason most of what I had learned from Mataya's heart surgery had been forgotten. It was 3 years ago and I guess I stopped thinking about it so I didn't drive myself crazy. I told Darlene that Mataya's cardiologist (Dr. Etheridge) couldn't get us in for a few months because Mav was a new patient. Darlene said to see someone else because he was so young and she didn't feel comfortable with us waiting. So we made an appointment with Dr. Molina at Primary Children's for the end of August. Mav was almost 2 months. Kody and I both felt like Mav's holes were going to be those common stories you hear about. Where they are not a big deal. Just small holes that cause no problems to the person. We weren't worried at all.

At our appointment with Dr. Molina we didn't have an echo just an EKG and a chest x-ray. Our echo from before was enough at that time.

These are pics of Mav at Primary Children's on our first visit in August. When Dr. Molina came in she showed us Maverick's heart on the computer screen. She showed us how his heart was enlarged and that he had blood around his lungs. She said his ASD was huge and that it was allowing so much blood to swish around, his lungs couldn't fully expand. It's kind of like being congested. Your heart is a muscle and when it works too hard it will get bigger. Mav's heart was enlarged a little but the main concern was all the blood swishing around. His heart is working so much it makes him tired and sweaty when he eats. Dr. Molina explained that the hole is so big, it likely won't close on its own. He will need surgery at some point to close it. Because of the position of the hole and the size he will have to have open heart. Mataya's holes were closed with a device. Mav's is way too big for the device and will need tissue to patch it up. The VSD still had a chance of closing but with the ASD the two holes together were causing problems.

Kody and I left the hospital that day without saying a word to each other. We were both shocked. We had already been through so much with Mataya. Why was this happening again? We got in the car and started driving home in silence. It was a rough day. Some days you feel sorry for yourself and get the "poor me's." That was that day.

We were able to make our next appointment with Mataya's doctor. Dr. Etheridge works at Primary's but  sees patients at Dixie Regional Medical Center once a month. Mataya was due for an appointment so we got both her and Maverick appointments together. It was October and Mav hadn't had an echo since July so both Mav and Mataya had to have echos. It was tough trying to keep them still for the duration of the echo. Mataya watched Bolt on the TV during hers, but Mav was a little harder. Mataya's echo went great. She doesn't have to be seen again for a few years. Maverick's ASD was still huge. Surgery was looking likely but they wanted to give Mav time to get bigger and stronger. She (the doc) said maybe when he is a year he'll probably have to have surgery. Dr. Etheridge said she wanted to see him back in November.

Mataya and Maverick getting echos

We waited for Primary Children's to call us and schedule Maverick to be seen in November when Dr. Etheridge would be in Dixie. That is how it works. They call you instead of the other way around. But they never did. So I called them and we missed her. She had already made the trip to St. George. I was frustrated because now we would have to travel back up to Salt Lake. But we made a family trip out of it and saw the temple lights, and had dinner with family.

At that appointment Dr. Etheridge said he will probably have to have surgery soon. His heart is working so hard that his little body can't gain weight. He is in the first percentile for his weight. So we (us and the doc)  made a game plan. I would pump my breast milk and fortify with formula. Which is what I had to do for a year with Mataya. I would make my breast milk 22 calories for the next two weeks. Then up it to 24 calories for two weeks after that. After that four weeks we would need to bring Mav back to Primary Children's for a sedated echo.We would check his weight and see if he had gained with the fortified milk. The echo would be pre-op to prepare for surgery. The doctor then went over the risks of the surgery. It was really hard to hear all of the stuff that could go wrong. She explained that he will be in Intensive care for 5-10 days. Then when he is released he will need about a month to recover. She said I can't go to work because I can't bring home germs to little Mav when he is trying to recover. She said McKoy will have to change his clothes when he comes home from school and be very careful around the baby. Kody and I both felt exhausted when we left the hospital. But we made the best out of the weekend. My in-laws brought up my other kids and we swam at the hotel, went to Chuck E. Cheese's, ate dinner with family, and saw the temple lights.

Then came December and Christmas. We had a great holiday but right after had to head back to the hospital. On Dec. 28th we went back to Primary's for the sedated echo. My dad drove us up and got us a hotel. Each trip is so expensive! It was so nice to have my dad and step mom there with us. It's hard not to go crazy, and when you have someone there to support you and take your mind off things, it really helps. We had to be at the hospital at 8:30am. Maverick couldn't eat before his procedure and was pretty hungry. We had x-rays done at about 9:30. They got his IV in at about 10:00am. He hadn't eaten since 10:00 the night before but he was being really good. They did the echo and then sent us upstairs to recovery. Dr. Etheridge met us in recovery. She let us know that it was time to set the surgery date. She went over the procedure and I felt sick. I don't want anyone cutting my baby's chest open and stopping his heart. I kind of just sat there with tears rolling down my face. I couldn't concentrate. I mostly felt like staring off into space. My stupid anxiety was taking over. Luckily my dad and Shelley were there to keep me from being a psycho. People came and took some blood for lab work. Mav was still out of it, and barley fussed when they poked him. He started waking up and wanted to eat. So after a while of him being awake and tolerating fluids they let us go. We drove to PF Changs to eat. It was nice to pretend that my heart wasn't breaking for my son. I know they do this surgery on little ones all the time. I know they are good at what they do. I know to them its simple. But to me it's my whole world. What is more precious than your child?

Mav is starting to act silly under sedation.

Totally out of it and fast asleep

Being wheeled up stairs to recovery

Still sedated

Cutest little hands EVER

Waking up

Mav is a thumb sucker. Here he is trying to suck his thumb, but they put the IV by his best one.:(

K here's the deal guys. I do have faith that Maverick will be OK. I know Heavenly Father will be there to hold our hands when we need him. He blessed us with these beautiful babies and we will do everything to keep them safe. I am so thankful that I get to hold and love on my little man. There are so many out there dealing with SO much worse. I know these things. I say them out loud to remind myself not to get the "poor me's." But sometimes I have bad days and forget. If I am having a bad day and I forget all my blessings please slap me back to reality. Remind me that I can't feel sorry for myself when I have been blessed beyond measure. That others deal with loss and sorrow beyond anything I can understand and to be thankful for what I have. I will try and remember these things...


***OK a little update***


So we had the surgery set for January until Maverick got RSV. It was terrible. He was hospitalized after a  long week of  many hours spent on the porch, coughing, breathing treatments, and steroids. We had to postpone his surgery 6 weeks. The surgery is now set for Feb. 27th. We have to be there the day before for pre-op stuff. Hopefully he won't get sick before then. I just want to get if over with so we can start the recovery process. To avoid sickness we pretty much keep Mav in the house ALL THE TIME. It's so hard when you want to go somewhere but can't. We also don't let a lot of people come in our house. The kids want to have friends over but we have to be careful. We really want to move on from all this.

Below are pics from the RSV experience.

(I will try to update while we are in SLC for his surgery so anyone that wants to, can follow his progress.)