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!

Happy Halloween!

We did Halloween pretty simple this year. We borrowed a costume for Cooper from some friends and Easton was himself. Cooper went trick or treating for the first time with his best bud, Sam. They loved it and it wore them out! Cooper went right to sleep when we got home. He loved being a skeleton. Sam and Cooper loved walking together and were so funny together! They were howling like a wolf and holding hands, putting arms around each other. They were giggling and kept tripping. Cooper kept taking two candies and would put one in his bucket and one in Sam's. He called them "trick or treats." It was a fun evening. A few days sooner I took him trunk or treating and he enjoyed that as well.

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A Proud Big Brother

Cooper LOVES being a big brother. He is so cute with him. He likes to sing to him and pat him. He often tries to tickle him and wake him up. He's a little rough, so we're teaching him to be careful. He's super proud though. He is always telling him he loves him. I love seeing their little relationship grow.

He's Home!

Cooper was with Grandma and Grandpa Frederiksen while we were taking care of Easton and getting him home. When Cooper came home, he was excited and surprised to see baby brother there. He was so cute! The first thing he did was grab his binoculars and check him out. Then he wanted to listen to his heart. I thought it was cute that he made that connection. We taught Cooper that Easton was in the hospital because his heart was broken. He would even tell people that. He put the stethoscope on his foot when he was listening to his "heart."

We're Going Home!!!

What a crazy day it was preparing for Easton to come home! There was so much information to go over, many meds to be trained on, an ng tube to learn how to put in, and so much more! It was very stressful, but we figured it all out and went home yesterday evening, October 23rd. It's going to be a lot of work to take care of him, but we're so excited for him to be home.

A Grateful Mother

There are so many things I have to be grateful for that there is no way that I can possibly list them. One of the biggest lately being that Easton is doing so well. Things can change at any moment, but we're just trying to enjoy each day. We're just so glad he's here.

I've been thinking lately though about how grateful and lucky I am to be a stay at home mom. Chris and I really wanted me to stay at home last year and were disappointed when last minute it didn't work out and I had to work again. I didn't understand why because I was trying to stay at home with my child, which I thought would be something Heavenly Father also wanted me to do. Looking back, I can see His hand in our life. It is such a blessing that I worked last year because it has made things easier on Cooper. He is so easy going. He doesn't mind going to other's houses, which has made Easton's hospital stay easier. As the days have gone on, it is starting to wear on him a bit. He wants to be home, but overall, he has done so well. I know it's because I had to work last year and also because Heavenly Father had it in his plan. I often think of a talk I read by Henry B. Eyring about home teaching and how wives need to support their husbands being gone because the Lord knows who will do ok for a while without their husband/dad. The Lord also knew what kid could handle his parents being gone a bit and I know he also helped Cooper through this, and will continue to do so. I also believe the Lord planned for Rachel to get home from her mission when she did. He knew we were going to need her help and us needing her help is keeping her busy as she is transitioning being home.

I haven't thought of this in a while, but I once thought what are we reaping the consequences of. I realized everything has a consequence, BUT some of negative and some are positive. Though at first the thought of this whole experience makes you feel like you're being punished for something, I realized that we are reaping the benefits of a good decision that we made... being married in the temple. The Lord knew Easton would be born into a loving family that he could be with forever. So yes, we are reaping the consequences, but the consequences of a good decision.

Heavenly Father is an amazing man, a wonderful father. He is watching out for each one of His children. He does have a plan. We don't ever seem to know what it is, but it always works out. It isn't easy, but it always works out. As I always say, life is good. Not easy, definitely hard, but so so good.

{Day 22}

Dear Easton,

First thing this morning they took you for an X-ray. You can see the five wires they used to close your ribs. It was pretty cool to see. You looked so tiny on the X-ray table. No worries for your future wife, they made sure to cover your man parts!

They did a lot more teaching. I put in my first gn tube... Not cool! I made you cry which made me want to cry. I didn't get it in the first time so had to try again, but we did it! Hoping I never have to do it again!

We gave more medicine, were explained more of your cares. No picking you up under your arms and no tummy time for a while. It could dislodge your ribs. They need more time to heal. You should be going home tomorrow, which is crazy to think. Daddy and I aren't feeling well and Big Brother still has a cough so that worries us. Just going to do our best not to get you sick.

Keep growing little guy!

Love,
Mom

{Day 21} It's Getting Real

Dear Easton,

Yesterday they told us you could potentially be home by the end of the week. That shocked us a bit. As much as we want you home, it is super scary. Today it felt even more real though. They brought by the scale we have to weigh you on every day. They also left us the binder where we record your weight, sats, feedings, medicine, etc. They call weekly to get the info and we will take the binder to all appointments you have. A case worker also stopped by to show us all the stuff they will be ordering for you from Homecare--- a feeding pump, oxygen (just in case you need it), ng tube stuff, etc. Then, Homecare brought by your oxygen tank and oximeter and trained me on it. And THEN they asked for your car seat to do a car seat check (to make sure your oxygen is good while in car seat). When they ask for the car seat, you know they are serious! You are too small for the newborn outfit Nana got to take you home in so tomorrow I gotta go get you a preemie outfit!

You also had your swallow study today and kind of passed it. Enough that they are starting you on bolus feeds (a lot at once then a break, like we eat) and a speech therapist will start working on bottle feeding with you tomorrow. Sounds like you will be on continuous feed at night and bolus during the day, with a bottle or two coming from a bottle instead of the feeding tube. You will also have a speech therapist that will come a couple times a week to work on feeding with you at home. And we will be starting Early Intervention. A lot of things to do to take care of you, but we are so excited to have you coming home. We know things can easily change and the unknown future makes it hard, but we have faith that things will happen as the Lord will want them too and it will be good so, we're getting closer! It is hard to believe.

Love you,
Mom

PS Your hair is already lightening. Your eyelashes and eyebrows are now blond and your hair is reddish orange. You weigh 2.7 kilos. And Nana came to hold you for the first time! She was super happy.

{Day 19} The Third Floor

Dear Easton,

Two days ago they removed the breathing tube and put you straight on the CPAP in hopes of preventing your lungs from collapsing. Yesterday we were told they were going to try to wean you to oxygen, but when we came in you weren't even on oxygen! That completely surprised us. You have done really well. We were told you would be moved to the Third Floor today so when we arrived you had been moved! It is exciting and scary because it means you're closer to coming home. I am terrified to take you home. I know each day we will have to watch for heart failure and a number of other things. I am scared I will miss something or that I won't miss something, but it will just be your time to go. I am so scared, BUT we are so excited for you to come home, too. Big Brother wants to hold you and it will be nice to not have to juggle our time between being here for you, but also being there for Big Brother. It is a lot to handle, but we do what we have to do. We just love you both so much and look forward to our family being together.

The third floor is a lot of teaching. They just taught me how to put medicine in your feeding tube. They will start letting me practice putting in your feeding tube soon. I am so scared to do that and a little grossed out. There is a reason I am not a nurse. We will figure it out though. Anything for my babies. They also said they don't like hypoplastic babies to cry because your heart can't handle it so there is a lot of cuddle time with you. It was hard to leave you because you're in this big ol' hospital room all by yourself and you're not watched as closely as you were when in the CICU. It makes me sad not to be there. One of these days you'll be home. As scary and hard as it will be, it will be nice to have you home.

Love you,
Mom

CPAP

A Lot Less Stuff

{Day 16} Finally, Progress!

Dear Easton,

You definitely have your daddy's personality--- you're laid back and do things in your own time. Day after day we are told they will extubate then you still have fluid around your lungs so they say maybe tomorrow. They keep giving you diauretics in hopes of getting you to pee off that fluid, but it hasn't worked. Finally, today they gave you a blood transfusion because your count should be 40-45 and it was 37. Not super low, but a little and they thought it may help you release that fluid in your chest and give you some strength... and it appears to have worked! Just a couple hours later, your blood pressure went down, you already peed off the amount of blood they gave you, and your tidal volume on the vent went down... all good things! Your nurse was surprised and happy so that made me happy! So, hopefully tomorrow you will be taken off the ventilator and this time do well. (And I will get to hold you!) They can already see during your practice sessions that you're breathing better, getting stronger. A few days ago you were doing about 120s on breaths then a few days later the 90s and today you were about 75, which is good. One nurse said you may be showing your gestation and that you just want time to grow, so it is taking you a bit longer. Dr. Woods said we are at a frustrating stage, but not a worrisome stage. He said in every way you are progressing. You're even up to where they want you to be on your feeds and say you're doing well cardiovascularly, we just gotta get those lungs working efficiently. So proud of you, Buddy!

Love,
Mom

Our good friends and neighbors, the Roses, had donuts delivered to the CICU staff today to say thanks for taking care of our friend, Easton. So super sweet.

{Day 14} A Good Day

Dear Easton,

You're doing well today. You did well on your last practice breathing session (they turn off your vent... give you a little pressure and oxygen still). This gives you an opportunity to breath on your own. They are checking to make sure you aren't breathing too fast like last time in hopes that after being extubated you don't have to be intubated again. They think you may be having a little withdrawls from the pain meds--- figeting and some gagging. They give you some oxycodone for this, but you haven't had to have a lot.

{Picture from my phone to come.}

You opened your eyes a lot when I first arrived at the hospital today. It's always so good to see your eyes. They also did some physical therapy with you now that your chest is closed. They will do range of motion and some other things with you since you're always laying in a "hospital bed." Overall, good day. Keep up the good work, Buddy! Mommy & Daddy love you! Big Brother is excited to hold you one day. He told me "careful easy" after I asked him if he wanted to hold you when you came home and he said "yes."

Love,
Mom