Happy 3 Months

This little man is three months old! He is 9 lbs 13 oz. He is a smiley, wiggly boy! He loves to have his forehead rubbed, watching football (or the movement of the tv), being held, and all the attention from the hospital staff. The first thing people comment on are his big eyes and how cute he is. Love this little addition! Happy birthday, Little Man!

Loves His Mommy

After two days away, due to possible sickness and a crazy wind storm, someone was super happy to see me!

2014 Moments

At the beginning of 2014, I decided to keep a document on my phone of moments throughout the year that I wanted to remember. I am so glad I did! Here they are:

• Jan. 1 | I sat in Cooper's bedroom floor as he got on my lap. He hugged me and I hugged him. Both of us with arms around each other. His head on my shoulder. Quiet. In the dark. A little bonding moment. Love him.
• Jan. 2 | my little kindergarteners coming in today from Christmas break excited to see me and to be at school. One asked if I missed him.
• Jan. 3 | rocking Cooper to sleep. I don't do it often anymore. He is getting so big. Didn't want to put him down. I love him so much.
• Laying next to Cooper singing him to sleep while he sang with me in his cute little voice. So precious.
• Jan. 13 | I had a tender little moment with Cooper tonight. He noticed his birthmark in the mirror after brushing his teeth. Made me sad at first then made me smile. I taught him the word birthmark. He says it well. When you ask him where his birthmark is he points to it. I have been blessed with such a sweet little spirit. I have so much to learn from him. Also, he discovered his nipples tonight. Called them "owies."
• Jan. 15 | Someone left anonymous note with $200 cash in it to me at school. Wow. Why me is all I could think. Tender mercies.
• Jan. 21 | Cooper is saying his name well. So stinking cute! He looks in the mirror at himself and says it.
• Feb. 5 | I have the sweetest boy. The Prince and Princess started to dance on the movi. He came over to me and grabbed my hand and said "dance, dance" and wanted me to dance with him. So we stood in the living room and danced and danced and danced. When we stopped he would say "more, more!" It was so cute. He wanted to dance with his momma.
• Feb. 20 | Found out we are expecting baby #2! Can't believe we will be a family of four by the end of the year. Ahhh!!!!
• March 19 | Just thinking of how blessed I am. I have a loving husband and the sweetest little boy. He was full of giggles and smiles today.neither of which I can get enough of from him.
• March 29 | Laying next to Cooper preparing for bed. I would tickle him and he would just giggle and giggle! When I would stop, he would say "more, more!" Lately he has being doing this Buzz Lightyear thing where he acts like he pushes a button on his chest and puts his arms out in front of him like he is flying and his eyebrows are down. Hilarious! Cutest kid ever! And we took Cooper to the putting green. He was in heaven!
• April | Laying in bed snuggling with Cooper one night. I started to think of the crazy, unfair stuff happening at work. At the very moment, he put his arm around me and was patting my back saying, "love you, love you," and wouldn't stop til I said it back. Tender mercy from a loving Heavenly Father letting me know he is aware of me and my trials.
• May 8 | Chris went to give me a kiss and my belly reached him before his lips reached mine. We enjoyed a good laugh!
• I had a though a couple of months ago... Maybe we have some of our hardest trials after we have kids because the Lord knows we will need that joy.
• June 29 | Sometimes I feel we are being punished for something. As I sit here and ponder, I realize: We are reaping the consequences but because of doing something good, not something bad. For being married I the temple. For having a desire to follow commandments and multiply and replentish the earth. The Lord needs this little one to have a body and he knew we could give it to him and allow him to be born in the covenant.
• July 4 | Cooper hated the fireworks tonight. He didn't like the noise. He kept saying "Cooper's house." We eventually went home and he was so happy to be home. I said, "Do you feel safe at home?" and he said, "Yes." Made me happy inside. I always want my kids to feel safe at home.
• July 24 | The night I felt a connection with my unborn child. I have struggled to feel a connection this pregnancy.l Understandably. Life is crazier this time around with a toddler but with our circumstances I know I am also scared to have a connection . But tonight I turned on Paul Cardall's "I am a child of God" and I started to cry and held my bump. I felt a connection with my son! It was like he was telling me, "Mom, I am a child of God, it's all going to be ok because I am a child of God" and "Mom, you are blessed to be growing a child of God inside you." I felt so blessed to hear these little words from him whispered to me and to feel that connection for the first time. He is mine. mine for a reason. I am blessed to be a part of his life.
• Sept. 21 | "You are a beautiful young lady. So proud of you." From my Grandma Call, 35 weeks pregnant.
• Nov. 2 | I look into Easton's eyes and see the sweetest little spirit. He knew what he would go through and chose to be here. I know he is grateful for his body. I can see it in his eyes.
• November | Cooper comes up to me, "I present for you." He had wrapped his fottball up with his pooh mat.
• Dec. 5 | Cooper had me wear his football helmet to play. He hits my head and says, "Go get 'em!"
• Cooper kept taking a start ornament off my tree and taking to his room. I didn't know why. I was there when he did it one day and he said "star, Mom." He was trying to put it on the top of his tree in his room. At that point, I had to let him keep the ornament and we put it on the top of his tree. Sooo cute!
• Dec. 9 | I asked Cooper how he was doing, he said "I'm great." I asked again later he said, "I'm doing great." Plain as day! Also caught him putting gmy makeup on! Hahaha!
• Dec. 10 | Cooper slept with his picture of him and Easton tonight and his Christ statue. Adorable!
• He calls me "momma" sometimes lately and not just "mommy." I think it sounds so cute. I love it!
• Dec. 11 | "Christmas lights in your glasses." Cooper saw reflection of lights in my glasses. His language is amazing!
• Dec. 12 | Just put Cooper down for a nap. I gave him a kiss and told him I loved him and got up to walk away and he said, "I love you, Momma," in the sweetest voice. Oh how I LOVE being a mom!
• Dec. 14 | Got a letter from nursery saying Cooper would be going to singing time with sunbeams the next two weeks then would be in sunbeams next year. One of those moments where it hits you that your baby is growing up. Where did the time go? I feel like he just started nursery.
• We have had sooo many blessings this year--- people putting up Christmas lights, a lovely sign from Kristy when I needed it, a message that came from a friend during a desperate prayer, things life on our doorstep, freezer meals and meals brought to us, Christmas gives, money, friends and family to watch Cooper, family to clean for us, and so much more!
• Dec. 17 | Looking at Easton in hospital. He doesn't look like he is feeling well and was a long night with him throwing up. I start crying and kept saying I am so sorry and he smiled at me. Telling me, "It's ok, Mom. I chose this life."
• Dec. 19 | From my mom: I forgot to tell you, when we got here {our house}, Cooper gave a big sigh and I said, "where are we?" We {mom and Cooper} were in the family room and he looked around and said "home." I said, "you like it at home?" And he said, "home, sweet." So cute. He is happy here, baby. You are good parents.

Edible Snowmen with Grandma

Grandma Frederiksen loves looking fun things up on Pinterest to do with Cooper. He enjoyed making snowmen, but doesn't like sticky things on his hands so he wouldn't touch the rice Krispy mixture.

In Loving Memory

We wanted so badly to give back. We have been so blessed. We decided to donate to the Ronald McDonald Family Room at Primary Children's. Family and friends brought things for us to donate. We decided to donate all the items in honor of Easton's first and forever best friend, Collin Halling. He passed away and it was really hard on me. I held Easton that night and cried and cried. I went and gave Cooper more bedtime kisses even though he was asleep, too. It felt so good to give back. We couldn't have done it without family and friends. Collin's mom, Shelby, got to come hold Easton a few days later. It made me happy to see her have a moment with him. I can only imagine what she is going through. It is a fear I live with each day.

Comfy

My Two Cute Boys

I took photos of the boys a couple weeks ago. Just a few good ones real quick. I bribed Cooper with fruit snacks! I sure love these two. There isn't anything better than being a mom.

Been a Rough Day

It's been a rough day. I was exhausted from Christmas day and only got about 4 hours of sleep last night. Then we got the news the Easton will be in the hospital for at least another two weeks. I had a feeling, but it sucked hearing it. They needed to put in a PICC line, this is like an IV, but in a bigger vein through his groin. It allows them to draw blood if needed and give fluids and other things. They had to sedate him to do this. It usually takes 20-30 minutes but took an hour. His veins are delicate they said and so they kept blowing as they tried to place it. It took three tries and three times the sedation medicine because he was fighting the sedation med. He will get TPN (total nutrition) from this and blood draws so he doesn't have to be poked all the time. He will get a shot twice a day since he can't take his aspirin via mouth right now. They don't want any stimulation to the gut so it can heal. It's frustrating they still don't know why it is bleeding because it isn't NEC. He will get nutrition through this for a week along with an antibitotic for a week. Then they will very slowly go up on his feeds until they get him where they want him to be. He won't grow, but it should give him enough calories to sustain his weight. They don't want bacteria to get into the blood stream. Easton also had some weird twitches occur today. They happened three times all within the same hour. His right arm and his tongue started twitching and his head seemed to get stuck looking to the left. A few minutes later it happened again. His left eye a bit with his tongue. Then the next time was his tongue and left cheek/side of nose. They said they aren't concerned because they didn't do anything to cause it. Also that he shouldn't have a blood clot because of the medicine he is on. His SATs also look good. It was scary for me and uncomfortable for him. It was also frustrating because I obviously felt something was wrong and they didn't seem too concerned. I am scared and worried for my baby. I am worn out. I miss being home with my family. I decided to go spend the night at my moms with Cooper and enjoy being with them for the night while Chris stayed with Easton. Hoping to rejuvenate myself a bit and be ready to face this journey again tomorrow. Oh how I love my sweet little Easton. He is such a strong little man whom I have so much to learn from.

A new quote I love: "Happiness is a sum of tiny enjoyable moments, not the absence of problems."

Christmas 2014

It has been not only a wonderful Christmas, but a wonderful month. We have felt the love of so many people. We have had prayers said in our behalf, our names put on the prayer roll, meals brought, nursery lessons planned and delivered, people donate things for our collection of stuff for the Ronald McDonald Family Room at Primary's, friends get us dinner, friends and family watch Cooper and do fun holiday things with him, a Secret Santa, chosen for the fm100 Christmas Wish that someone nominated us for, a friend who got us a deal on newer tires for our car, and numerous people dropped off Christmas gifts anonymously. My heart is so full. A few nights ago I sat and cried and cried on the floor. I couldn't believe that people would do so much for us. It also hit me that we really were going through this experience. It isn't something I am going to wake up from, it isn't a dream. I am so grateful for the amount of love we have felt. Words can't even express it enough. It has truly touched our little family. I look forward to being able to give back one day. I hope it is something we can do each year in some way.

Despite Easton being in the hospital, we were able to enjoy ourselves. We spent Christmas Eve at the annual Frederiksen Christmas Party. We started at the graves to sing Christmas carols. It was particularly hard because we sang at the grave of our cousin's baby that died a few months ago. I know it could be us one day and so it was super hard. How grateful I am for the time we have had with Easton and how I pray we have a long time more. We enjoyed good food and lots of laughs. It was great to be out of the hospital and with family. My sweet mom stayed with Easton. How grateful I am for her. She is my best friend. She is strong when I need her and I am strong when she needs me. Love her to pieces! We got home late and quickly made cookies for Santa. Cooper was so cute making sure the cookies and milk were put exactly where they were last year.

We woke up about 8:30 to open presents. Let's just say there were a LOT. There were so many that Cooper started throwing the wrapped ones back under the tree cause he wanted to play with some things he had already opened! Silly kid! So he has some left to open. We were all so spoiled! One reason I loved this Christmas was because I tried my hardest to think of things I could do for little to no coast because I knew we couldn't afford it. I got Chris contacts with our eye insurance, a few stocking stuffers, used an old sub to put photos on for his electronic picture frame at work, and got a Damian Lillard autographed poster for free from his work. I got some beautiful clothes and my Mother's ring for Easton. We got blankets, lots of toys, gas gift cards, diapers, wipes, clothes for the kids, and so much more!

We enjoyed talking to Camille via Skype as she is on her mission in California. We spent a few hours and had an early dinner with Chris' family. We then went to the hospital to spent a little bit of time as a family. We had Cooper decorate a paper tree for Easton's room and took a family picture. We finally got a snow storm! We decided to celebrate Christmas with my mom and brother Sunday due to bad weather and the roads being slick. Chris and Cooper went back to his family's to open gifts and had me on FaceTime so I could enjoy it too. I sure missed being there, but it was nice to be a part of it. Can't wait to celebrate with my family Sunday!

An Easton Update: He isn't doing great. He started having bloody stools last night. X-ray came back negative so decided to lower feeds and go up much slower. He has started having them again tonight so another X-ray. It was inconclusive so stopping feeds till morning to have another X-ray. They are unsure at what to do at this point. They added another medicine to coat stomach and esophagus. We sit and watch and wait for now. I wish I knew what to do or that they did. I wish something would come back positive so we knew and then we could work on fixing it. For now we keep playing the guessing game and hope something works.

What a great day it has been! Truly a Christmas we will never forget! Feeling so blessed.

Christmas Eve

Nana spent Christmas Eve with Easton so we could go to the Frederiksen Family party. We missed Easton, but had a great time. Easton enjoyed his time with Nana.

I Know

Well, we were discharged Saturday and were home for about 24 hours before Easton was readmitted. He has a lot of poopy diapers with blood in them each time, like 9 in 12 hours. We finally called his nurse at the hospital and she had us weight him. He had lost a significant amount of weight. She wanted a KUB done. It is an X-ray to see if he had NEC. NEC is common in heart babies. The gut starts to die, creating blood in the stool. It is due to poor blood flow to the gut because of the poor flow from his heart condition. It is something I had read about prior to having him. His X-ray came back inconclusive and it did look different than the X-ray the day before so they had us come to Primary's. They stopped giving him his meds and food, anything that goes to the gut. They don't want to stimulate the gut at all, they want to give it time to heal. His next three X-rays came back normal, which is great! They are making him go 48 hours without food, just giving him clear liquids, lipids, and tpn. He is also receiving an antibiotic. If he gets NEC they worry about bacteria getting to the blood stream. They are doing it as precautionary. His bacteria cultures are negative so that's great! He is such a strong boy. He is doing well. We will likely be here for Christmas. They will start him back on formula slowly tomorrow if his morning X-ray is normal. They can't move too quickly or they risk him getting NEC due to the gut responding negatively. So slow and steady! I am so proud of this boy! He knew this life would be hard, but he chose to be here. My personal thought... Heaven must be pretty awesome to be willing to go through all this.

I was speaking with my mom the other day. I told her how I KNOW the gospel is true, but let's just say what if it isn't? At least while I was on this earth, it gave me hope. That is something I will forever be grateful for. Thankfully I KNOW the gospel is true. I KNOW that families are forever. I KNOW He has a wonderful plan. I KNOW He loves me and knows me. I KNOW He hears and answers prayers. I KNOW.

Brave Little Man

My sweet, brave little boy. So proud of him for choosing to follow our Heavenly Father and choosing to be here despite how hard he knew it would be. Heaven must be pretty awesome to be willing to go through all this.

Fourth Times a Charm?

We've been in the hospital since Monday, Dec. 15 with Easton again. We came down for a cardiology appointment and he wasn't happy with his weight gain. He said it shouldn't be this hard. He had Easton admitted and some tests were done. We haven't found the problem or solution, but we have marked some things off the list. His stomach isn't turning and he doesn't have piloris stenosis. We did find that he has gallstones, but they don't believe they are causing the problem. He has been put on medicine for the gallstones. They also started another medicine that is known to decrease retching, but takes about a week to see a difference. We tried a different formula and he got bloody stools so back to Elecare, a special hypoallergenic, expensive formula. We have continued to get KUB xrays to make sure he doesn't have NEC. It's where the gut/bowel starts to die. It's common in heart babies because of poor blood flow to the gut. It can kill him so we are watching closely. If he ends up getting it, he is automatically in the hospital for two weeks. One week on TPN feedings through a PICC line. This gives the gut a break so it can heal, but they have to catch it in time. Otherwise, we get a lot more problems and risk death. Despite continued bloody stools here and there he hasn't had a positive xray. We were getting all ready to discharge today, probably an hour away, and his heart rate decided to sky rocket. It was in the 190s-200s for at least an hour and he was just laying there. They gave him Tylenol and he doesn't have a fever. So, we will see if they let us go home today or not.What a bumpy road this journey is. I keep reminding myself that it could be worse and he is still here. It breaks my heart to know that one day he will be gone. I just pray the Second Coming occurs before or that it's after I die as an old, old lady. ;o)

Christmas Jammies!

We do Christmas jammies as the first day of our advent calendar so they can be worn all month. Easton was in the hospital so we were a few days late, but the boys didn't care!

Dear Cooper

Dear Cooper,

I wanted to write you a letter in case you remembered the difficult time we went through when you were younger with your brother Easton because I want you to know that you are just as important as him. He just needed a lot of care for a while.

First, I want you to know that your daddy and I love you so much. We know this experience is not easy on you. We are trying to make the best decisions for you right now even though we are sure you feel passed around. We are glad you get to enjoy time with friends and family doing fun things when we are away. We miss you terribly when not with you. We hope you can look back one day and know that though Easton required a lot of attention, that it wasn't because we loved him more. We love you both equally and so so much. I always worried having another kid that I would love one more than the other and have found that isn't possible. Nana always told me that I wouldn't know how much she loved me until I had kids. It is true and one day you will know how much I love you. Daddy and I are just trying to do the best we can right now.

We hope you can see how having Easton as your brother made you a better person. It is making all of us better people. I hope you see that your dad and I would do anything for either of you. We hope you saw the faith we had in our Heavenly Father and Jesus Christ. We hope our testimony of the gospel and His plan showed. We hope you grow to have that same faith and see the miracles and blessings in our family's life because of all we went through together. We hope you know that you can always turn to your Father in Heaven for love, guidance, and peace. He is ALWAYS there.

I also hope you know that I am ALWAYS here for you. No matter what. Life is going to be hard. It was from the beginning for you, but you overcame the obstacles in your way. You are the smartest, vivacious little boy. Your smiles, giggles, talking, silliness, and so much more make me laugh. You bring joy to my life each day. I am so proud to be your mother. I love you dearly and hope you always know, see, and feel that.

Love,

Mom

Our Second Home

We have been admitted two more times since my last post. The last time resulted in an nj tube (feeding tube to the intestine). This way he can't throw anything up since the stomach is bypassed, but he has still been very wretchy. He is now occasionally throwing up bile. We are currently here. We had a cardiology appointment yesterday. He said his heart is doing what it needs to be right now, but he was not happy with his lack of weight gain. He just isn't growing enough. He wanted us admitted and to meet with GI. We have since ruled two things out. He does have gallstones, which is weird for someone his age. They don't think this is the problem though. His blood count is also low again, but his oxygen and heart rate are fine so they are putting of a blood transfusion if at all possible. GI thinks he needs to grow to give more room for his stomach. At some point a g-tube might be considered. Especially if he won't take a bottle. Since throwing up a lot and being on continuous feeds he seems less and less interested. It doesn't mean he will always be that way and hopefully when we get to the point where he can keep food down that he will pick the bottle right back up like it was nothing. If so, no g-tube. If he doesn't take the bottle, it will be considered.

The days all seem to mesh together anymore. I feel bad that we are juggling Cooper around so much. He misses us. I am at the hospital and Chris has to go to work. He is getting to do fun things though. Enjoying time with Nana, playing with friends, and even the Treehouse Museum with Aunt Rachel. We have enjoyed someone doing the 12 Days of Christmas for us. Cooper loves going to the door and getting the present. The first time he did he was so confused when no one was outside the door. We enjoyed putting together a gingerbread train on the 2nd day. We have so many watching out for us and helping us. We feel very loved and blessed.

MakeUp

Someone wanted to help me with my makeup. I ran to answer the phone and came back to this. Good thing he is cute!

Another Stay

Trying to look at the positives: 1) He is still here. 2) At least it isn't his heart right now. 3) Love Primary Children's and it is relatively close. 4) Cooper is excited to have a play date with friends, thanks Ben Mandee Wheeler! 5) I have an excuse to eat all the fatty comfort food I want. 6) Hopefully we solve the problem and it is only a couple of days. 

Headed home... again!

We have been in the hospital since this past Sunday. Easton was throwing up a lot again. We have since decreased his calorie count in his formula. He is on an increased amount because heart babies hearts work so fast that they burn more calories and we need him growing for his next surgery. He seems to be tolerating the lower calories better and being on a different reflux medication. We also took him off a multivitamin and he is just on Vitamin D now with his three other medications. If he starts to throw up again to the point that he is losing weight, they will likely move his NG tube (into the belly) to an NJ (into the intestine). This is a big step backwards when it comes to feeds so we hope that doesn't happen. He has been moved to continuous feeds which is a step backwards, but not a huge step. He is tolerating that well too. We're super excited to be heading home. Having your family under one roof is a wonderful feeling. We're hoping and praying this is our last hospital stay until his next surgery. Loving this cute little man!

Thanksgiving

Today has been a wonderful Thanksgiving. It's been simple, yet great. We spent it with my family since there were too many people attending Chris' family's Thanksgiving. We don't know who has been sick or has had their shots. It was sad to miss it, but we had a great time with my family. We had a delicious dinner, watched football, took naps, put up the Christmas tree, ate pie, and played games.

Words can't express all the things I am grateful for, especially this year. The list is endless. Some of the things that come to mind are:

• Easton being here.
• Modern medicine.
• Priesthood blessings.
• Family. 
• Incredible children's hospital nearby.
• My amazing husband.
• Awesome friends/neighbors/ward.
• My little family.
• Prayer.
• My mom! I couldn't do this without her!

We are so incredibly blessed. You always know you are, but when you're going through trials you recognize the blessings even more. Maybe it's because you cling to them a bit more looking for any piece of hope and happiness that is around you. Maybe it is because there are more. Either way, we have them and we're so grateful. Happy Thanksgiving!

A Look Into My Daily Life

Coming back from the hospital has been another transition. All the responsibility falls on my shoulders again for the care of this little man. Yeah, I get help here and there, but overall, it's me. I had to laugh because of our medicine situation. Easton is on four meds. Two one a day, one twice a day, and one four times a day. Cooper went to the ENT doctor while Easton was in the hospital and the doctor is wondering why Cooper's ear tubes aren't lasting evening a year. He said they should last at least a year and a half. He is trying to put off another set of ear tubes for at least a month, so he put Cooper on three meds--- one once a day, one twice a day, and ear drops three times a day. I am going crazy trying to remember it all. Then, there are diaper changes for both kids, baths, laundry, grocery shopping (which I did at 11 PM the other night), dinner, feedings for Easton consisting of bottle and ng tube, bedtime, naps, and so much more. The days seem non-stop. I am exhausted. Yet, we somehow manage to make it each day. We are being watched over, but you can't tell me you aren't worn out after reading that!

We are going home!

We are finally going home! Easton is still throwing up here and there, but they think it is due to reflux and his cold. They have upped his reflux meds to what they can and he is gaining weight again, so they are sending us home. He also passed his swallow study yesterday. That was pretty neat to see. You see the barium he drinks go down his throat in real time in an X-ray. I am happy to get home. I miss being together as a family. Easton has been all smiles the past two days.

Pictures to come.

Teasings of Home

The past few days we have been tempted with going home and then something happens to keep us here. He is still struggling with feeds. Today the doctor came in to see how he was doing and talked about us being discharged. Then he started to gag in his sleep and kept it down. As she turned around to leave, up it came. Today he really struggled after taking his bottle. He had a bit of strider during the last few gulps. He was very uncomfortable and fussy and was breathing really hard. The speech therapist said she didn't want him going home yet. It has been decided to do a swallow study with him again tomorrow. We will do a bottle at 9am with speech and a swallow study at noon. From there hopefully we will have some answers and can progress towards moving home. They are wondering if he is aspirating some and we didn't find out on first swallow study because he only took 5mls when he did the initial test. They are hoping to get him to take more tomorrow so we have a better idea.

The stay is starting to wear on me a bit. It makes me worry more for him. I am missing Chris and Cooper. I am missing my home and my bed. I miss being productive. I get bored here very easily. I hold Easton every moment I get, but try to let him sleep too. I love looking into his eyes. How I wish I could take all this that he has to go through away. I love hearing him talk and occasionally see a little smile out of him. I would do anything for Chris, Cooper, and Easton. I will never be able to express to them how much they truly mean to me. How they make my life meaningful and full of joy. I always knew I was meant to be a mom. I never realized it would be so hard, but I am so grateful for the blessing of getting to be called mom.

Cooper also went to the ENT today. I took him a few weeks ago when he didn't pass his hearing test in his left ear. Turns out the same thing happened as last year, his left ear tube fell out and got stuck in the ear. The ear isn't draining on its own. Luckily no infection yet. We did medicine for ten days and returned today to figure out what would be happening. Since no infection but still fluid behind the ear, doctor is going to try two more medicines. He said tubes should last at least a year and a half. Cooper's don't seem to last even a year. He thinks he may have a small tube. In four weeks he will decide if we need to do ear tubes again. We return to the doctor two days before Christmas for them to decide.

Our boys keep us on our toes. Life truly is an adventure. I am so grateful that the Lord blessed us with these two sweet, sweet boys. Just figuring out how to juggle it all!

Happy Third Birthday, Coops Man!

Dear Cooper,

Happy birthday! We can't believe you have blessed our lives for three years! You're growing up to fast. Just within the past month you've changed so much. Words can't describe the amount of joy you brought to our life when you became a part of it. Life is so much more fun!

Some things about you:

• We don't know why, but you have the cutest southern accent when you say a lot of things.
• You love sports. Your latest obsession is football. You could play it all day! You even use the correct terms.
• You hate to wear clothes.
• Changing your diaper is torture for us because you're so ticklish.
• You're a great big brother. You're always kissing Easton. I often carch you singing to him and telling him you love him. 
• You love to sing songs with me and read books at bedtime. 
• Your laughter is contagious. To hear you giggle, especially when tickled under your chin, makes me laugh!
• You are a daddy's boy! I wish you were a momma's boy. 
• You love fruits and vegetables, especially salad. And you will each almost anything if you can dip it in "sauce." You call ranch dressing, A1 sause, etc. "sauce."
• You love marshmallows.

I could go on an on. You're such a smart little man. I'm so excited to see you continue to grow, though you'll always be my baby. We love you, Coops!

Love,

Mom (& Dad)

Admitted

This little man was admitted to the hospital yesterday.

picture to co me

Easton's heart condition is so severe and he is so critical during this time before his next surgery that he gets "special treatment." We have a binder we keep on him. We weigh him at the same time each day and record his weight. We also record each feeding, how much he gets, what type of food, and how he gets it (oral/feeding tube). We have also been recording if he throws up. He has been doing it a lot over the past two weeks and we changed formula twice thinking that would help and also stopped using breast milk. He did great for a few days on this new formula that is $50 for a small can! Then he started throwing up again and worse than before. We have even started a reflux medication.

Because he is high risk, we also have a doctor we can call at anytime with questions or concerns. I called her Friday to see if we could stop fortifying because last time we did he stopped throwing up and the past 24 hours he had thrown up a lot. She called the next morning and he had thrown up the past three of four feeds and was struggling with his overnight feed so she said we needed to come to Primary's and that he was going to be admitted so they could figure out what was going on (that was yesterday). 

After being here a couple hours his oxygen started decreasing pretty quickly. They checked his blood count and decided he needed a blood transfusion. It did wonders for his oxygen. They had put him on oxygen cause it kept dropping, but after the transfusion they were able to take off the oxygen. His heart rate was also high and they said the high heart rate and low oxygen is often what these babies do when they need their next surgery. Obviously Easton isn't big enough for his next surgery. And since his sano (small tube they put in his heart for blood flow) gradient (the flow basically) was high when we went to cardiology, he may need a stent put in his sano. His heart rate his since gone down and since oxygen is back up, we may be able to put this off for a little while longer, but it will likely need done. 

He also got a temperature while here. They checked him 30 minutes later and he was fine so we aren't sure why he had the temp. We are grateful for it though, because of it they decided to do a test to see if he had something, sure enough... the rhinovirus (common cold). We have tried so hard not to get him sick and he still did. We have said that a cold could land him in the hospital and here we are. People think I am paranoid, but they don't realize the severity of the situation. He has a little cough and yet it has thrown him for a loop. It was a blessing he was having the feeding issues because we were here to find out that there were more serious things going on. I am super glad his oxygen didn't start decreasing at home. 

They also felt he was a bit "dry" once here. It is a term often used with these heart babies. They are on lasix to help them get rid of extra fluid. We don't want any on the heart/lungs because it makes it all have to work harder and on an already weak heart, it's not good. So, they stopped his lasix because he was too dry (a little dehydrated). 

He is tolerating feeds so far. They put him on a continuous feed and have worked the volume and calorie count up. They are going to have a speech therapist come to see him bottle feed tomorrow. They wonder if he really isn't ready for a bottle like they thought. We will see tomorrow if they want to do another swallow study or other feeding plans.

It is weird because by being here I feel like a weight has been taken off my shoulders for a bit. I realized I carry a lot of stress. Being here it is like a bit has been lifted because I have people helping me watch him that know what they are doing when it comes to his care. It is nice to have that help.

We knew this journey would be a rollercoaster and as hard as it is on the emotions and so much more, I am so glad to have this little man bless our lives. He has the sweetest little face. I love his smell and looking into his eyes. Oh how I wish I could take all the pain away for him, but then I remember that our Savior suffered and died for all of us that he could succor us through these trials. We are so incredibly blessed. We are being watched over. We don't know what His plan is, but we know it's good. We know whatever it is that we will get through it. 

Admitted

Friends Spreading Sunshine

We have THE BEST friends! Looked out our window to see this this morning. It made us smile and maybe shed a few tears . Seeing two mommas I met in the CICU lose their heart babies has broken mine. Been a sad couple of days. One of the babies was Easton's room buddy before surgery, Collin Halling. When I found out last night I picked Easton up and held him and cried like a baby and went and kissed my sleeping Cooper. I love my boys.

Pic to come

A Happy Momma

As moms, we often don't get in the picture because we are taking it or because we don't like how we look. I had this little moment where both my boys were cuddling with me and I realized that it didn't matter what I looked like. What mattered was the moment. I love these two.

The transition to Easton being home has not been easy. I cried every day probably the first week, but I'm starting to get the hang of it. He gets multiple medicines in the morning (when he first came home it was morning and night). He has an occupational therapist that visits once a week to work on feeding. He has an oximeter to monitor heart rate and oxygen. He has oxygen in case he ever needs it (doctors say as he gets bigger he will likely need it). It's hard to not worry about different things, but doctors say he is looking good. We also have many doctors appointments we go to each week, high risk, pediatrician, and cardiology. We can't let him cry because it is too hard on his heart which makes getting things done difficult whether it be going to the bathroom, eating, cooking dinner, etc. We are slowly figuring it out. It also makes car rides interesting. Someone has to sit in the back with him. The other day he still wouldn't stop crying on the way to Primary's for an appointment so we pulled over, unclicked his carseat, rocked it until he stopped crying, then put it back in the car and continued on our way. It's been a big transition. I wouldn't trade Easton for anything though. I still cry on occasion. I'm worn out, exhausted to be exact. Cranky, too. I love these kids though. I would do anything for them. They are my world.

My Three Boys

Caught my three boys sleeping today. Cooper woke up and went up by Easton and was hugging on him. I love them all. I am so lucky!