Tuesday, January 31, 2012

Other random Januaryisms...

Talmage got a Mr. Potato Head for Christmas from Uncle Chase and has seriously played with it everyday since. He loves it, and can spend hours putting together faces and then taking it apart.



My boys and I spent Sunday morning planning our dream Disneyland vacation. And if you think I'm kidding, I'm not. We watched video after video of every ride in the park. We toured Mickey and Minnie's houses, and Talmage has declared that the train rollercoaster will be his first ride. (He also told me that he's scared of Dumbo the elephant and "does not want to fwy, fwy, fwy wif him.") We were all laughing and giddy. I am pretty sure I am a five-year-old in a Mommy's body.



T and I built a space ship together when Evie was taking a nap. He said he wanted a T and an L on it. T, of course, is for Talmage. When I asked him what the L was for he looked at me, almost shocked, and said, "L is for lion." Duh, mom. Get with the program. We took quite a few space trips to the moon and to mars. We also took a rocket-boat ride to Sacramento and Stanfor Cisco (San Francisco).



My parents suprised me with a glider and ottoman (to help with the nighttime nursing). It's been a dream at night, and we've also loved sitting together during the day and reading books. It feels good to be home with both of my boys again.

Monday, January 30, 2012

Seven.

Everett has been in our lives now for seven months. A part of me feels like it's been a whole lot longer--two heart surgeries and a lot of worry will do that to you. The other part of me still thinks of him as my newborn. Yes, I know he's now closer to one than zero, but I can't help it. He's so much smaller than T was as a baby (he weighs the same now as Talmage did at 4 months old) and I forget that in actuality he is growing older with each passing day. He is very much still my baby--he likes to cuddle, he prefers mama's milk to baby food anyday, he doesn't sit up or scoot and he sometimes (but rarely) rolls over. But at the same time, we have seen a new spunky side of Everett lately that is both shocking and endearing. Just a word to the wise, if he's playing with a raddle, please DO NOT touch it. You've been warned!


He's eating a little bit more baby food lately and he is kind of, sort of, sometimes liking it. He eats rice cereal, and has tried applesauce, sweet potatoes, peas, green beans and prunes (we were trying to help with his constipation after leaving the hospital). He sucks his thumb in between every single bite and he is an absolute mess after every meal. We're hoping that a little extra food will help him pack on the pounds, especially considering his vocal cord injury and subsequent nursing issues. Although for weight gain to happen he would have to get more mush in his mouth and less mush on his clothes--we'll keep working on it.



The last few days have been really rough for Everett. I wish I knew what was wrong. He spends a good portion of his days, and an even larger portion of his nights crying and moaning. Does his chest hurt? Or maybe it's just itchy and bothering him. Is he cutting teeth? He has two already so I'm sure more are on their way. Does his stomach hurt? Is he feeling warm? Is there an infection that I should be aware of? I wish I could ask him and I wish he could answer. It's probably just normal seven-month-old behavior, but my seven-month-old just had open heart surgery, which makes nothing normal to me. In the meantime, we are working on being patient with each other and doing our best. We spent most of today outside, and it seems like the crisp California air mixed with the madness of lots of kids at play kept him entertained and distracted him from his pain. I think it was a lovely seven month birthday afterall!

Friday, January 27, 2012

Courage

Upon being admitted to the CVICU, we were given a long string with beads spelling Everett's name. The nurses introduced us to the beads of courage program which is designed to honor the challenging journey kids take while receiving care for cardiac conditions. Each time Evie had a procedure done, was poked or scanned, stayed over in the hospital, had an infusion, etc. he was given another bead to add to his string. I don't think we remembered to get every bead we should have (and UCD didn't have this program, so his first surgery is not included on the string), but we did always try to remember to get the beads that he had earned. I think someday he will think this is really cool, and it will definitely make an awesome show-and-tell item. He will be able to show everyone his badge (eh hem, string) of courage!


In Evie's short life he has taught me so much about how to act with courage. Webster describes courage as "the ability to do something that you know is difficult or dangerous," and Everett has done that, always with a smile on his face and a peaceful, happy, calming nature. He has had health issues, he has had surgeries, he has been poked and prodded more than I have in my whole life, and yet he handles it with grace. When I am facing a hardship or trial in my life, I hope I can have the same sweet courage that my son has shown. He is my little hero, that's for sure.

When the doctor first took the long white bandage off of Everett's chest I started to cry. Here was my perfect, innocent, beautiful baby with a long, red scar down his chest. The doctor kept commenting on how beautiful it looked, but I didn't say a word. I just cried. I was shocked by my emotion, and to be honest I was shocked by the scar. But the more I look at it, the more beautiful it becomes to me. That scar is beautiful because it represents a life still being lived. That scar is beautiful because it represents a heart that is still beating...and in fact beating much better than it ever has. That scar is beautiful because it is on my perfect, innocent, beautiful baby boy and is now very much a part of his story. I hope that Everett is always grateful for that long, red scar down his chest. I know I am.

Thursday, January 26, 2012

Getting to know each other

Since being home from the hospital we have been doing a whole lot of nothing, and yet it's been an exhausting lot of nothing! Everett and I are becoming reaquainted. We are trying to re-learn how to co-exist, and do even the simplest of things. He's trying to remind me how he likes to nurse, the new ways he likes to be held and the owie spots that he'd rather I not touch. I'm trying to remind him how much he loves kisses and gentle squeezes, trying to show him that I can be gentle and still secure him in my arms and desperately trying to work the tape off of his poor battered skin. Yesterday I think I gave him too many loves, and as a result he was up most of the night in extra pain. Even cuddling with mom all day is hard work when you are used to hanging out in a hospital bed full time. We've given him extra medicine, and I've tried to give him a little more space today (a little, not a lot mind you!)

I've been a little down today. Along with learning a new Evie routine, I'm also trying to process the events of the last couple of weeks. In my life, I have found that Heavenly Father blesses me with an incredible amount of strength to push through difficult experiences. I was given peace and courage during Evie's hospital stay, his surgery, and his recovery. But as was the case in the past, after the experience is over it takes me a while to process it all, mourn for the experience I have had, and move forward. I'm incredibly grateful for everything--the doctors and nurses who performed this difficult surgery with excellence, my friends and family who have supported and loved our family, a Heavenly Father who I KNOW loves my family and has constantly watched over and protected us. And yet I don't find it ungrateful to process what has happened--to try and make sense of it. In my experience, it's in the disecting of our trials that we are able to understand what Heavenly Father wants us to learn, and how we can use that newfound knowledge to bless His other children. It's also in the disecting of our trials that we can see with clear eyes all of the blessings and miracles that were given. So today has been a day of reflection. I am trying to see what He sees in me, what He sees in Ev, and what He sees for our family. And one thing I have seen perfectly--He loves us.

As I mentioned last night was a rough one for little Everett. He was up every hour moaning and crying (although he doesn't have a voice, so his cry is weak and breathy--barely audible). Everett has never been a baby that cries a lot, so when the tears start flowing you know things are not good. James was doing homework downstairs and I decided that Evie and I should watch a movie together to keep our mind off of the pain (it worked like a charm in the hospital). Jim started cracking up when he came upstairs and saw us snuggling in bed together. And of course the movie, mixed with Mommy-snuggling and a Daddy-sighting, brought forth lots of smiles!



And when I started laughing, he wanted to know what was so funny. He arched his little neck and refused to take his eyes off of me for at least 2 minutes! I am NOT complaining at all...how could I? He is the sweetest baby ever. Hopefully tonight will be better in the sleeping department and his little body will continue to heal.


In other news, Talmage will be coming home tomorrow after a fun week at Mema and Pepa's house. He has been spoiled with love, attention and things and I fear he may go through culture shock when I'm in charge again! I am SO grateful that my parents gave T a stress-free, fun-loving week. Everyday he has reported to me about new things he's done, places he's been and yummy treats he's eaten. It's a blessing to have family so close. I love that little rascaly two-year-old (who is getting more 3 everyday). I can't wait to see him. Our house and family are not complete without him.

Elder Uncle Chase



{my brothers--Chase and Jordan}


A big, fat, crazy congrats to Uncle Chase for receiving a mission call to serve in Ogden, Utah. I honestly don't think I could be more proud if I tried. Chase has bloomed this past year (although I don't think he'd think that was a very manly way of saying it) into a strong, valient, and incredible man and just thinking about him and about his mission call makes me want to cry. So proud. So proud. We love you Elder Uncle Chase!

Tuesday, January 24, 2012

You're not going to believe this!

The dressing came off so the scar can breathe.



A much-needed bath was given and the last line was pulled.

I was taught how to carry him and we took a few walks.


It was determined that Evie's left vocal cord was paralyzed from the surgery and we went downstairs to do a swallow study (an awesome test where they take multiple x-rays while the baby drinks a bottle to determine where the fluid is going). We have a few eating restrictions, but luckily he can still nurse.




And then they sent us home. HOME! Post-op day four and we are at HOME.


It's all a little surreal. I definitely wasn't expecting it. But I'm so excited to be HOME with my boy. Woo-hoo!

Monday, January 23, 2012

A busy 24

The last 24 hours have been super busy for our little man. Here's what he's been up to:

Smiling. Oh yes, my friends, that sweet smile is winning nurses over by the dozens. The whole pediatric team rounded on him this morning instead of half the team ONLY because they were told he was such a cute baby and had an amazing smile :)


Sleeping sideways in bed.
Being weaned from his nasal canula and breathing room air.
Sleeping off surgery.

Being transferred to the floor in a little red wagon. I was shocked that it happened so soon, but all the doctors have been very impressed with his recovery so far. He looked so darn cute in that wagon! I've gone through a little bit of shock from not having a personal nurse, but it has its perks also (like not as many beeps at night!)



T came to visit and took a ride of his own around the floor (pediatric unit). He tried to talk Mema into letting him take it into the elevator and home with him, but it didn't work!


Being cute.

And being disconnected from lots of lines, meds and tubes. The chest tube even came out this afternoon which is awesome because it was extremely painful for him and making him so sad.

Drinking Mama's milk straight from the source. I'm hoping that now that the chest tube is gone this will be more successful and less painful.

Rekindling his romance with his thumb. I'm so glad they've reunited!


Watching movie after movie on his personal big screen TV. Such the life!

Wearing a diaper on his foot so that he doesn't kick out his only remaining IV (fat chance, but we're trying).

Playing with Mr. Elephant and Scout that brother brought from home.

Peacefully snoozing. Not that he needs any extra beauty sleep--I think he might just be the most beautiful baby I've ever seen.

Saturday, January 21, 2012

Pictures of the boy

It's been another long day, but it was a good day. Everett is recovering well from surgery. His heart was playing some games with us this morning, but they discovered that the pacing wires were actually adding to his arrhythmia (irregular heart beat). Once they reset them, the irregularity stopped. The pacing wires are there just in case his heart needs a boost. I was told today that he was actually on a pacemaker for about 15 minutes after he came off of bypass because his heart was not wanting to work properly. I am so grateful that it worked yesterday, and I am so grateful that this mornings episodes were nothing more serious.

His blood pressures have regulated and he was extubated and put on a nasal canula. His main issue today was pain management and hunger. He was on morphine but it wasn't working, and it was making his poor little face itch like crazy. He was thrashing with pain and arching his back. He has lost his voice (could be temporary, could be more permanent) and his crying is so sad. They switched his pain medication (and gave him some benadryl) and he seems much more comfortable.

He was not able to have milk until late this evening. They started giving him pedialyte this afternoon but that was not satisfying and everytime I held him (yes, I got to hold him twice today!) he would thrash his body around in frustration. I can only imagine that it must be very hard for him to understand what's going on, and why his mother won't feed him. It was also very hard for me. I wanted so badly to love on him, but today he did not want me.

Tonight after he ate a bottle of mama's milk he slowly fell asleep. He looked so comfortable and peaceful, and was still sleeping when I left. It made me feel better about the day. Recovering from surgery is really difficult for all parties involved, I guess I had forgotten how stressful and intense it is. Please continue to pray for our family and for the little man.

Here is our last two days in pictures:
Everett preparing for surgery. He couldn't eat before surgery and was SO hungry...but of course had a big smile on his face! We can't wait to see that precious smile again. And PS--Evie makes hospital gowns and booties look so, way cute!

This is right before the anesthesia team took Evie for surgery. I was a wreck, not going to lie. I've felt an incredible amount of peace surrounding Everett's surgery, but that moment was not pretty. I'm glad that James was there to help me be strong. How sweet is that thumb-sucking baby?


And six very long hours later our baby met us in the Cardiovascular Intensive Care Unit (CVICU). The waiting game was made much easier because of a few friends that work at the hospital and decided to drop in to see how we were. Other than that, I passed the time watching Kelly Ripa and pumping like mad. Evie looked beautiful and perfect, although I am perfectly aware that I'm a very biased mama!


Our Heart Hero.


Everett has been an exclusive thumb-sucker for the last month or so, but luckily he welcomed the binkie back into his life today! At least while his thumbs are not accessible. His arms are in those cute casts because the little rascal is trying to pull out all of his lines!


We tried to add a little bit of color to his bed. That blanket was given to him by a sweet old man that volunteers at the CVICU. I made him that sign this morning. I wanted a picture of his smiling face present so that the doctors, nurses and everyone near him can know his true nature. Again, I can't wait to see that sweet little smile.


I also put some other pictures by the bedside, just to give it a little love! Daddy and Evie.


Me and Evie. This is about as close as I could get without him smelling my being and screaming his head off!


Talmage came to visit his little brother today. He's been having a hard time with everything. When we got home to tuck him in last night he was upset that Evie was not with us. He kept saying, "Don't take me and leave me." again and again. He thinks we just left Everett somewhere and he's afraid we're going to do the same thing to him. Luckily, my amazing mom has been here to take care of him, and today we took him to the hospital so he could better visualize what was going on. It was hard for him, but also good. The first thing he said in a hushed voice was, "Oh no, baby Evie is sick." We explained things to him again, had him kiss Evie's head and gently touch his fingers, and then Daddy took T to see the trains by the heart center. Overall I think the visit was a success.



Daddy holding our sweet little man. He is such a strong boy and we couldn't be prouder of him.

Friday, January 20, 2012

Evie Ev.

Surgery went well today.


Dr. Reddy was able to repair the coarctation and transverse arch, as well as fix the VSD with four little stitches. We learned today that Evie has another heart defect--supra mitral membrane and an abnormal mitral valve. They were able to peel away the tissue of the mitral membrane (also called mitral ring) but we will have to continue watching the mitral valve. Let's hope and pray that it isn't an issue for a long, long time (like, never maybe?!)


It was a long day and an emotional day. Evie's surgery was what our surgeons called "textbook," which is amazing, but recovery is always a beast. Everett's stats have been all over the board, but by late tonight he was more stable. We are all exhausted, so he is snoozing at the hospital and Jim and I just got home to take a little nap (you know, like a night-time nap!)


We are grateful for surgeons, doctors, nurses and so many other wonderful hospital personnel that have dedicated their life to healing our son. We are grateful for family and friends that have been so loving, giving and thoughtful. Oh the stories I have told my journal about YOU! Thank you everyone. And we are grateful for a loving Heavenly Father that has blessed us with an overwhelming sense of peace and calm today. We couldn't have gotten through the day without it.


I'll post pictures of Everett and more updates tomorrow. Goodnight.

Thursday, January 19, 2012

In the meantime

Since Everett's surgery was postponed to Friday, we had two days to spend with family that had come into town. Here are some of the things we've been doing (and about a million and a half pictures of Evie).


T entertaining Grandma, or Grandma entertaining T? Maybe both.



Owl-man getting in all the swings he can.

Pizza My Heart with the fam.


Papa & GG with the boys.


We've gone on lots of walks. T is so sweet and always has at least one hand on Ev. He's such a good big brother.


We also took a few walks down memory lane. This is where Papa lived when he went to Stanford.


The Wiggy men in front of their bff, the library.




The Big Wigs and the Wiglets in front of the Memorial Church.


He, as always, has been full of smiles...


...and those smiles tripled when he tried out some apple juice for the first time (actually it was pedialyte. it's the only thing he can drink before surgery so I wanted him to try it out. he LOVED it!)



I.Love.Him.A.Lot.And.More.


Mema got here this afternoon, and T is definitely looking forward to his time with her.


And may the force be with her, cuz this kid is wild with energy!