Friday, October 24, 2014
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.
Thursday, October 23, 2014
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.
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.
Wednesday, October 22, 2014
{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
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
Tuesday, October 21, 2014
{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.
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.
Sunday, October 19, 2014
{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
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 |
Thursday, October 16, 2014
{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.
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.
Tuesday, October 14, 2014
{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
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
Monday, October 13, 2014
{Day 13} A Step Backwards
Dear Easton,
Doctors called us at 1:30 AM to let us know they would be putting your breathing tube back in. Thankfully they called 30 minutes later to let us know all went well. When we arrived today we were told your lungs were slightly collapsed (due to working so hard to breath yesterday) so you need pressure from the vent to help them stretch a bit. So the vent gives you puffs every so often to help fill your lungs up since you're only taking little breaths. They said with time this should fix itself. Looks like at least a couple more days on the vent. They will keep giving you time to practice on your own to help you get those lungs strong and to also check to see if you're ready to have it removed again. We would hate for you to have to be intubated again. You are doing good though. Even had your last chest tube removed today. They are watching your phosphorus, which helps give you energy, because it is a bit low. They occasionally give you pain medicine and lasicks, but you're pretty much off everything and are up to 7 ml of breastmilk. You're a strong little guy so keep fighting!
Love,
Mom
Sunday, October 12, 2014
{Day 12} Finally!
Dear Easton,
Daddy and I arrived at the hospital today to find that you only had one medicine machine hooked up, two chest tubes gone, your last central line removed, and your breathing tube out! You could also see your scar because they removed the bandage. Talk about happy and proud parents! What was even more exciting was we got to hold you again! We loved that! Nothing like cuddle time with your kiddos! You seemed quite comfortable too, but kept breathing too fast. Prior to leaving they told us they were going to try a few more things before putting your breathing tube back in. They let us know that it is very dangerous to put your breathing tube back in after having heart surgery so of course I lost it. I am a crier. I am just so scared to lose you because I love you so much. You're my baby. I wish I could take all the pain away so you didn't have to go through this, but you're strong. They are also watching your potassium because it has been running low. Keep fighting.
Love,
Mom
Daddy and I arrived at the hospital today to find that you only had one medicine machine hooked up, two chest tubes gone, your last central line removed, and your breathing tube out! You could also see your scar because they removed the bandage. Talk about happy and proud parents! What was even more exciting was we got to hold you again! We loved that! Nothing like cuddle time with your kiddos! You seemed quite comfortable too, but kept breathing too fast. Prior to leaving they told us they were going to try a few more things before putting your breathing tube back in. They let us know that it is very dangerous to put your breathing tube back in after having heart surgery so of course I lost it. I am a crier. I am just so scared to lose you because I love you so much. You're my baby. I wish I could take all the pain away so you didn't have to go through this, but you're strong. They are also watching your potassium because it has been running low. Keep fighting.
Love,
Mom
Saturday, October 11, 2014
Friday, October 10, 2014
{Day 10} Chest Closure
Dear Easton,
Could a mom be any more proud? I am so amazed by your strength and your brother's. You have both been through so much already. You knew life would be hard but you both chose to follow your Heavenly Father's plan and come to this earth. You're incredible kids! I truly have the best boys.
I want you to know how proud I am of you. You hung on that first night when it looked like we might lose you when they couldn't get you stable and unsure why, but you hung on. You did it! They closed your chest this afternoon. At 1:20 PM, Dr. Burch came to tell me your chest closed well and you handled it well. Your stats all did well with the close. We are one step closer to getting to hold you again. Our next goal is to have you extubated. We hope that will happen within the next two days.
When we arrived today you were wide away and had lost even more water weight! You were smaller than when you were born even. Just goes to show how swollen you were due to your heart flowing incorrectly. We can now see that you look like your daddy! You even have his nose. Oh, your are so cute! I just am so excited to be able to hold you again soon!
Keep growing and keep fighting! We are all so proud of you!
Love,
Mom
Could a mom be any more proud? I am so amazed by your strength and your brother's. You have both been through so much already. You knew life would be hard but you both chose to follow your Heavenly Father's plan and come to this earth. You're incredible kids! I truly have the best boys.
I want you to know how proud I am of you. You hung on that first night when it looked like we might lose you when they couldn't get you stable and unsure why, but you hung on. You did it! They closed your chest this afternoon. At 1:20 PM, Dr. Burch came to tell me your chest closed well and you handled it well. Your stats all did well with the close. We are one step closer to getting to hold you again. Our next goal is to have you extubated. We hope that will happen within the next two days.
When we arrived today you were wide away and had lost even more water weight! You were smaller than when you were born even. Just goes to show how swollen you were due to your heart flowing incorrectly. We can now see that you look like your daddy! You even have his nose. Oh, your are so cute! I just am so excited to be able to hold you again soon!
Keep growing and keep fighting! We are all so proud of you!
Love,
Mom
Thursday, October 9, 2014
{Day 9}
Dear Easton,
You're doing so well! They say you're an over achiever... peeing like a champ! The goal is to close your chest tomorrow. We're really happy about that news because it makes us a step closer to getting to hold you again.
You're doing so well! They say you're an over achiever... peeing like a champ! The goal is to close your chest tomorrow. We're really happy about that news because it makes us a step closer to getting to hold you again.
Wednesday, October 8, 2014
{Day 8} Happy 1 Week Birthday!
Dear Easton,
You're sure keeping us on our toes. We called first thing this morning to see how you were doing and were informed that your kidney's weren't functioning as they should. You needed to be peeing more to pee off fluid so that the swelling will go down so they can close your chest. Until this happens, your chest has to stay open. They were unsure why you weren't peeing more yet. Doctors expect 2-3 days to return to normal, but are thinking you will take 4-5 days. Of course, this really worried me.
Nana came to see you before Mommy & Daddy got to the hospital. She said you were moving and opening your eyes a little today. That was great to hear. We found out that you are peeing more now and the number that needs to go down (shows good kidney function), was lowering. It was a 1 when we arrived. Normal is about .3, but it was down from the 1.6 that you were initially at. Progress. That's what matters, progress.
You are moving your feet a bit and you opened your eyes for us! It was so good to see your eyes! You know we are here and we know you are here. I can't tell you how great it was to see our little Easton! I couldn't help but keep telling you, "You did it! You did it!"
We're taking Big Brother to go get ice cream after visiting you today to celebrate your one week birthday. We're so proud of how brave and strong you are. Keep improving for us! We can't wait to take you home!
Love,
Mom & Dad
You're sure keeping us on our toes. We called first thing this morning to see how you were doing and were informed that your kidney's weren't functioning as they should. You needed to be peeing more to pee off fluid so that the swelling will go down so they can close your chest. Until this happens, your chest has to stay open. They were unsure why you weren't peeing more yet. Doctors expect 2-3 days to return to normal, but are thinking you will take 4-5 days. Of course, this really worried me.
Nana came to see you before Mommy & Daddy got to the hospital. She said you were moving and opening your eyes a little today. That was great to hear. We found out that you are peeing more now and the number that needs to go down (shows good kidney function), was lowering. It was a 1 when we arrived. Normal is about .3, but it was down from the 1.6 that you were initially at. Progress. That's what matters, progress.
You are moving your feet a bit and you opened your eyes for us! It was so good to see your eyes! You know we are here and we know you are here. I can't tell you how great it was to see our little Easton! I couldn't help but keep telling you, "You did it! You did it!"
We're taking Big Brother to go get ice cream after visiting you today to celebrate your one week birthday. We're so proud of how brave and strong you are. Keep improving for us! We can't wait to take you home!
Love,
Mom & Dad
{Day 7} Sitting at Your Bedside
Dear Easton,
After spending the night at home and enjoying some time with Big Brother this morning, Daddy and I headed down to the hospital to see you. We made a quick stop to the Surgery Waiting Room to check on the parents of Collin, he has been your room buddy since you were born. He has four heart defects and was having his first surgery today. We know it's hard so we wanted to go see how they were doing.
You were doing well when we arrived. You had a rough night, but had stablized. You are on very little blood pressure medicine. The ventilator is still doing a lot of work for you because they had to give you a medicine to paralyze you last night. They didn't want you waking up or moving because you were so unstable. Basically they wanted to "take you out of the picture" they said so they could do other things (they were doing a ton of things) to figure out why you weren't stable and to try to get it all fixed and where they wanted it.
Your stats ( labs, blood pressure, urine output, and drainage) were a lot better when we arrived. Your oxygen is still on the low end (70). They want you between 75 and 85. They aren't changing anything though because your blood pressure is good (occasionally drops which is normal for havin just had a big operation). They said your oxygen should eventually go up as you heal and your heart becomes stronger. You will also have lower oxygen levels, but your body is pretty cool. It was aware from day one of your heart condition so your body knows to carry more oxygen in it's cells to make up for poor oxygen levels. So, even though your oxygen looks low compared to maybe Daddy's oxygen level, they have found that 75-85 is where heart babies do well and it is sufficient for your brain, etc. Pretty cool.
We sat by your bedside the rest of the day before heading home to be with Big Brother. It's hard, but we know you're in good hands. I call to check on you in the middle of the night when I get up to pump. We love you and are so proud of you! Keep up the good work, Buddy!
Love,
Mom
After spending the night at home and enjoying some time with Big Brother this morning, Daddy and I headed down to the hospital to see you. We made a quick stop to the Surgery Waiting Room to check on the parents of Collin, he has been your room buddy since you were born. He has four heart defects and was having his first surgery today. We know it's hard so we wanted to go see how they were doing.
You were doing well when we arrived. You had a rough night, but had stablized. You are on very little blood pressure medicine. The ventilator is still doing a lot of work for you because they had to give you a medicine to paralyze you last night. They didn't want you waking up or moving because you were so unstable. Basically they wanted to "take you out of the picture" they said so they could do other things (they were doing a ton of things) to figure out why you weren't stable and to try to get it all fixed and where they wanted it.
Your stats ( labs, blood pressure, urine output, and drainage) were a lot better when we arrived. Your oxygen is still on the low end (70). They want you between 75 and 85. They aren't changing anything though because your blood pressure is good (occasionally drops which is normal for havin just had a big operation). They said your oxygen should eventually go up as you heal and your heart becomes stronger. You will also have lower oxygen levels, but your body is pretty cool. It was aware from day one of your heart condition so your body knows to carry more oxygen in it's cells to make up for poor oxygen levels. So, even though your oxygen looks low compared to maybe Daddy's oxygen level, they have found that 75-85 is where heart babies do well and it is sufficient for your brain, etc. Pretty cool.
We sat by your bedside the rest of the day before heading home to be with Big Brother. It's hard, but we know you're in good hands. I call to check on you in the middle of the night when I get up to pump. We love you and are so proud of you! Keep up the good work, Buddy!
Love,
Mom
Tuesday, October 7, 2014
A Mother's Emotions
After being in Easton's room last night, I felt overly stimulated. People never stopped coming in and out of his room and discussing his state. At one point there were five people discussing what to do. I felt the anxiety. His chest tubes bubbled. The lingo became incredibly confusing. My ears and body hurt from it all. After hours it seems like this morning there has been progress with his stats. This is the hardest thing I have ever had to do in my life. I can't talk about it without crying. I can't think about it without crying. My heart hurts. Trying to be strong but feeling so weak.
Monday, October 6, 2014
{Day 6} First Open Heart Surgery: Norwood with Sano
Dear Easton,
Daddy and I woke up early and signed all your papers for surgery. We both held you for the last time before surgery and shook the hand of the man going to touch your heart--- Dr. Burch. Taking you back to the OR was so hard, but the hardest thing was those last kisses. Daddy and I both gave you kisses on your head and they wheeled you away. Oh my! That was so hard! Daddy and I stood in the hall and cried.
We went back to surgery at about 7:45 AM. They should have started around 8:30. We sat in the waiting room all day. These are the updates we received by phone:
9:45 - Doing good. Took a little longer to find the arterial line, but doing good.
11:20 Doing great. About to put him on bypass machine. (I lost it when we received this update. It's such a scary thing.)
12:50 Sewing your heart back up. Everything is fine. Will do echo after done and will check to see if everything is ok.
1:44 Off the bypass. Echo is good. Will finish up and surgeon will come out in hour or two to explain how things went.
2:30 Surgeon came to explain how surgery went. You're doing good. He said it's better to start in a good place and go up than start at a bad place and try to go up. Your STATS are mid to low 70s which is good. Between 70-85 is where they expect you to be. He gave us a sono for us to know what they put in. Everything appears to be good. Some leakage in a few spots, but nothing to be concerned about.
3:30 We finally got to go back to your room and see you. You had 11 medicines/fluids hooked up to you. You had three chest tubes and a catheter. You had the two lines going into your belly button (you had these prior). You had a line in your arterial line that looked awful. They had a hard time finding it so had to cut into your arm. It was all bloody and your fingers were purple and swollen. You were also on the ventilator. You didn't look near as bad as we had prepared for, but you still didn't look great. It was hard to see you after because you weren't able to act like yourself. You were completely out of it. To be honest, your face looked dead. It broke my heart. I hate that you're having to go through this. I am touched that you knew before you came to this earth that life wasn't going to be easy, but you chose to come. The Lord has you here for a reason and we feel so blessed to be your parents. Keep fighting, Little Guy!
Love,
Mom
Daddy and I woke up early and signed all your papers for surgery. We both held you for the last time before surgery and shook the hand of the man going to touch your heart--- Dr. Burch. Taking you back to the OR was so hard, but the hardest thing was those last kisses. Daddy and I both gave you kisses on your head and they wheeled you away. Oh my! That was so hard! Daddy and I stood in the hall and cried.
We went back to surgery at about 7:45 AM. They should have started around 8:30. We sat in the waiting room all day. These are the updates we received by phone:
9:45 - Doing good. Took a little longer to find the arterial line, but doing good.
11:20 Doing great. About to put him on bypass machine. (I lost it when we received this update. It's such a scary thing.)
12:50 Sewing your heart back up. Everything is fine. Will do echo after done and will check to see if everything is ok.
1:44 Off the bypass. Echo is good. Will finish up and surgeon will come out in hour or two to explain how things went.
2:30 Surgeon came to explain how surgery went. You're doing good. He said it's better to start in a good place and go up than start at a bad place and try to go up. Your STATS are mid to low 70s which is good. Between 70-85 is where they expect you to be. He gave us a sono for us to know what they put in. Everything appears to be good. Some leakage in a few spots, but nothing to be concerned about.
3:30 We finally got to go back to your room and see you. You had 11 medicines/fluids hooked up to you. You had three chest tubes and a catheter. You had the two lines going into your belly button (you had these prior). You had a line in your arterial line that looked awful. They had a hard time finding it so had to cut into your arm. It was all bloody and your fingers were purple and swollen. You were also on the ventilator. You didn't look near as bad as we had prepared for, but you still didn't look great. It was hard to see you after because you weren't able to act like yourself. You were completely out of it. To be honest, your face looked dead. It broke my heart. I hate that you're having to go through this. I am touched that you knew before you came to this earth that life wasn't going to be easy, but you chose to come. The Lord has you here for a reason and we feel so blessed to be your parents. Keep fighting, Little Guy!
Mom
Sunday, October 5, 2014
{Day 5} Day Before Surgery
Dear Easton,
Your surgery is tomorrow. I have been a mess. I am so scared, but I'm trying to be strong for you. Your face has been less swollen today and you've opened your sweet little eyes a lot more. We enjoyed a lot of snuggles today. Daddy and I love holding you and looking at you. I got to give you a bath tonight to prep you for surgery. You seemed to be a bit more fussy tonight and I think it was because of your medicine, you were in a bit of pain. That was hard to see. Daddy and I did our best to calm down. You also had your first blessing. Grandpa and Daddy gave it to you. I am so grateful for the priesthood. Nana and MeMaw were there as well. You are so loved.
I also woke up at 1:30 to pump and you were awake, eyes open, and fussy. I calmed you down and talked to you. I walked away and you cried. I came back and you calmed right now. I loved looking into your eyes when we talked. I walked away again and you fussed. So I decided I had to hold you again. So we snuggled for an hour or so. You went right to sleep.
Love you!
Mom
Your surgery is tomorrow. I have been a mess. I am so scared, but I'm trying to be strong for you. Your face has been less swollen today and you've opened your sweet little eyes a lot more. We enjoyed a lot of snuggles today. Daddy and I love holding you and looking at you. I got to give you a bath tonight to prep you for surgery. You seemed to be a bit more fussy tonight and I think it was because of your medicine, you were in a bit of pain. That was hard to see. Daddy and I did our best to calm down. You also had your first blessing. Grandpa and Daddy gave it to you. I am so grateful for the priesthood. Nana and MeMaw were there as well. You are so loved.
I also woke up at 1:30 to pump and you were awake, eyes open, and fussy. I calmed you down and talked to you. I walked away and you cried. I came back and you calmed right now. I loved looking into your eyes when we talked. I walked away again and you fussed. So I decided I had to hold you again. So we snuggled for an hour or so. You went right to sleep.
Love you!
Mom
Saturday, October 4, 2014
{Day 4} Meeting Big Brother
Dear Easton,
You met your big brother today. He was so excited when he came into your room. He put out his arms saying "Baby Bruder! Baby Bruder!" He knew who you were as soon as he came in. He immediately wanted down. He got right up on my lap next to you and loved looking at you. He even gve you a few kisses on the head before leaving. You two are going to be best friends. You're doing great. Looking as cute as ever.
We love you!
Love,
Mom
You met your big brother today. He was so excited when he came into your room. He put out his arms saying "Baby Bruder! Baby Bruder!" He knew who you were as soon as he came in. He immediately wanted down. He got right up on my lap next to you and loved looking at you. He even gve you a few kisses on the head before leaving. You two are going to be best friends. You're doing great. Looking as cute as ever.
We love you!
Love,
Mom
Breastfeeding Take 2
Deciding to breastfeed this time was a difficult decision. I debated it up until a few weeks prior to delivery. It isn't that I didn't want to, but whether or not I could handle the time required to do it. My experience with breastfeeding last time became very stressful. I produce a lot and I felt like I was pumping too often for too long. I was running around like crazy because life still goes on. It was just very difficult. I knew this experience could be even more difficult because I know it is very likely he will never breastfeed at the breast and it will always be pumping. At least with Cooper he was able to eventually breastfeed. With heart babies though, it is typically too tiring for their little heart to breastfeed. The commute is also longer and I have another child. However, one day I just decided I needed to do it. I needed to at least try. Today I am feeling so glad I did. There is something about being able to provide food for your baby. To know it is healthier for him. I came in knowing what questions I wanted to ask the lactation consultant and that if it becomes too stressful I will stop. I am already feeling like this experience is going to be better, which makes me happy. I feel blessed to be able to provide my baby with nutrients he needs.
Friday, October 3, 2014
Be Positive
Dear Easton,
We found out you have B+ blood, just like Big Brother and Daddy. Guess you're sending us the same message that Big Brother did during his experience... to be positive!
Love,
Mom
Subscribe to:
Posts (Atom)