A Special Bond

On Thursday evening I was reminded once again that although we have been faced with many trials, God is right there by our side, showing his love. Sometimes it feels like he has left us, I know this is not true however, it is such a blessing when he gives us a glimpse of his nearness.

Last Thursday evening was spent with some of my absolutely amazing "heart Mom" friends. I've been so very blessed to have met so many beautiful, strong, and simply amazing women along this journey. We all share the familiarity of what it feels like to live with our sweet little blessings who have CHD. From the first time watching your child be rolled in after surgery (nothing can prepare you for this) to sitting along side their beds as the fight for their lives and some of us have had to face the most difficult of all, saying goodbye for now to our precious babies. We all live with the concern of what tomorrow will bring and even though we love to enjoy each precious moment we all feel the anxiety of the "next appointment."

One of my new special friends, Dana shared a perfect comment, she said, "there is a spoken and unspoken bond that all heart moms share." She was so right on! Had I not gone through this journey I would of never met these beautiful women. It hurts to have travled this path, but I cannot begin to tell you how lucky I feel to have God placing these women perfectly in my life.

Not everyone was able to make the Orange County get together, but we plan to continue this "heart mom night out" tradition. My hope is to have moms, in all areas get together a couple times a year to celebrate what God has given all of us, "a special bond."

Some of my heart mom friends:

Jennifer, Debbi, Gretchen, Kathie, myself and Dana

Thank you for a great, fun and as Jennifer said, "uplifting" time.

Love you all!

Quick little update

We feel so blessed to share Luke has been doing really well with his big boy food. YAY!! We have been praying for this so very long and we feel so thankful we are at this point. The menu is still extremely limited. He has lost some weight from the transition and it takes 30-60 minutes to finish his meals, but we are taking what we can get. The very best part is he has not vomited in 3 weeks. Such a huge blessing! Thank you God for finally answering this prayer.

Unfortunately, Luke is sick again. We are doing our best to keep him at a distance from Abbey and are praying from him to recover quickly. Other than that he is doing great and loving school. He will always be my loving little guy.

As for Aba Daba Doo (Luke's nickname for Abbey :) she is doing so good. She is the happiest baby. I just love how happy she is. Everyday she is laughing and smiling. She is getting so strong. We have been working on lot's of tummy time to help build her strength, because after surgery it will be weeks before she will be able to be on her tummy. Her weight is slowing down however, she is still at 14lbs. Luke and Gracie were 16lbs at a year, so it has been fun to have a little one with a little chunk.

Plans have changed with her catheterzation. It is now scheduled for December 17. We will stay at the hospital for a day or two and then return home unless they see something that needs immediate attention. Her surgery is scheduled for January 6. We pray that all goes well these next few weeks so we can be with family during the holidays.

Adam and I are doing great! We finally are relieved from much stress with Luke's feeding issues and all the worries of what is to come. Adam and Grandma Marsha watched the kids so I could go to Vegas for my sister Bridget's 30th birthday. I had the best time with my family, but was so excited to get home to my hubby and kiddos.

We will let you know how the cath goes on the 17th. Thank you for checking in.

Love, Terra

My sister Amy, Bridget, mom(Laura) and myself in Vegas

Happy Birthday sister I love you and was so happy to be able

to celebrate your birthday with you!

Mom-thank you for a great weekend!!

My sisters, cousins and auntie's. We had the best time ever!!

Ok...so this is not Adam's favorite picture...he says she is too little

for such an outfit. :) However, I LOVE it and besides she only wore it

for the picture. :) It was her outfit for aunties trip to Vegas.

Told her she has about 25 more years. ha ha

Philippians 4:6-7

Although I absolutely love Northern California, I was so happy that Abigail's test looked good and that we were able to come back home for now. Of course Adam and I have a hard time of letting go of the anxiety about her upcoming surgery, but I have place this paragraph next to a place that we pass every day. It's a reminder for us to not feel anxious.

Life is full of many concerns stemming from the absence of certainty and control over our future. While we can never be completely free from worry, the Bible shows us how to minimize worry and anxiety in our lives. Philippians 4:6-7 says do not worry about anything, but with prayer and supplication with thanksgiving make your requests known to God and then the peace of God will guard your hearts and minds in Christ Jesus.

Abigails Catheterzation is scheduled for December 15th and they will tentatively be putting us on the schedule for surgery on December 17th. There could be a slight possibility that the surgeon sends us home for the holidays and performs surgery the first week of January however, we made it very clear as much as the holidays are important to us Abigails surgery is most important. Many families have to celebrate holidays in the hospital, and if we are there than that is where we are meant to be. Only God holds the timing of her next surgery, so we just hand it over to him.

We left Luke back at home because we knew the 6 1/2 hour drive there plus the hospital would of been a little too much for him right now. Which worked out perfect because as usual he had the best time with Grandma Laura and Grandma Marsha. Thank you mom's for everything!! We love you!

Also, thank you to our constant support system. We love you all as well!

Hoping everyone has a safe and Happy Thanksgiving.

All our love,

Chez Family

Heading up to Stanford

So sorry that I wait so long to post and then it becomes this long....update. For those of you who like the updates, enjoy. For those of you that just check in for pictures, scroll down :) Either way thank you for stopping by.

About four to five weeks ago we had a huge scare with Miss Abigail. As I reached the living room to get her bottle I noticed her cry got a little different, so I ran back to the bedroom to see her face turn completely pale and then noticed she was not moving or breathing. I quickly picked up her lifeless body and started yelling her name. Adam ran downstairs and while I was trying to be calm for Luke we quickly called 911. It was such a difficult experience to go through. I remember holding Abigail and thinking No Lord not her too. It still brings tears to my eyes to think back to that moment.

We were rushed to CHOC :( and were admitted for the night) Many tests were run and unfortunately it was never found as to what caused the episode. There were a couple thoughts as to what may have happened. 1. Tet Spell or 2. She may have aspirated.

We were released the next day and sent to LA for further testing. We have been closely monitored and had scheduled a Catheterzation for tomorrow. Although, after Adam and I had a discussion with Dr. Perry and Dr. Hanley we decided we did not want to have multiple caths prior to her surgery as the can be very risky. Therefore, we are heading up north tomorrow and will start off doing a lung perfusion. If there is concern with the blood flow she will then be taken in for a cath. If not, we will be heading back home and be closely followed until December 21, which is when the catheterzation has been scheduled.

As far as miss Abigail, she is just a great baby. Besides the fact she does not like to sleep, she is so easily pleased. Having one baby at a time is much different than twins. I'm guessing that is why it is so much easier this time around. We are all just loving on her and enjoying her adorable smiles, new laughter and all her cooing. She LOVES her baths and LOVES family time. Her eating has slowed down some (which is to be expected) but she is still putting on the lbs. (thank you God!)

Now for our Luke. If you would of asked me a week ago how things were, I would of probably cried. Luke was really struggling in so many areas, partially adapting to having to share time with mommy and daddy but it was mostly feeding. He was vomiting at least three times a day for a few weeks. Most of it was behavioral and since he knows how to do it so well, it was constant. If he did not want to go to school, soccer, to get a hair cut or go to a friends house he would bring all his food up right before or at the location. Of course this brought on much stress for Adam and I, which caused frustration with Luke and in return caused Luke to feel bad. I'm so happy to say for now this cycle has ended.

We have started to try "big boy food" once again. It takes us an hour to just get 1/2 sandwich down, but we are going to try and continue on working on this and with Gods help we pray that Luke will start learning how to eat what most kids his age are eating. No more jar food is our prayer and hope. As for Luke's heart, looks like we will be doing a catherterzation early next year to see when they feel surgery is needed.

Luke is back to feeling good and is enjoying school, family time and visits from friends and family. We have a new neighbor Carly, she has more energy than any other 4 year old I know, so we are so excited to see Luke try and keep up. The first time meeting Luke she shared, "I do like girl stuff, but I also love to play sports and things that boys like too!" Too funny!

As for Adam and I and how we are making it through all this......well that's another blog update, besides I probably lost half my readers by now. :)

Thank you for checking in and we will keep you updated once Abigail has her Lung Perfusion test.

For those of you who are my Facebook family and friends you have already seen the photos below, but I wanted to share them with my blogger friends and family.

Thank you Lord for blessing me with my children.

I'm holding on to each precious moment that you give to

me with them. I had no idea my heart could stretch

so much! Thank you!

Please help us to pray for the Doctors and Nurses who will be assisting in Abigails testing. For Abigail to not feel too much pain and for our tired hearts. We need God to fill our hearts with strength as we have been feeling emotionally exahausted thinking about Abigails upcoming surgery. Lastly for God to remind us daily of his soverignty.

Thank you!

All our Love, The Chez Family

Pumpkin Patch fun~and sweet memories

My sweet precious Gracie~although you are no longer here with us, there is not a day or season that you are forgotten. We all miss you so very much. Our hearts will be so happy when we are with you again and it will be as if we were never apart. Mommy loves you princess!

Thinking back to sweet memories......

It would be unfair for me to say live each day as if you thought tomorrow may not come. It’s just not that realistic and besides to be that deep it would be simply exhausting. However, I do feel I can say during this season where things get crazy and you try to make it to every party and have the kids involved in every thing possible...be sure to just stop and take a moment as a family to enjoy your time together. Life is so precious and how quickly we can get lost in the daily grind. I wish we had more holidays and seasons with Gracie, but she is now in Heaven. God and Gracie have taught me so much about embracing life and each special moment and for that we will always be grateful. We will be creating new special memories with our sweet Abbey and Luke and will ALWAYS remember and cherish those spent with Gracie.

Update on Luke and Abbey coming soon, very soon promise :)

All our love,

The Chez Family

INDESCRIBABLE

in·de·scrib·a·ble (ĭn'dĭ-skrī'bə-bəl)

1. Exceeding description
2. Too extraordinary for description

Photograph by my very dear friend Dave Donovan

Indescribable moments:  

Listening to Luke’s laughter

Picking him up from his first day of school

Watching his first soccer game

Kissing him good night and good morning

In a quiet moment having him say, “mommy...I really love you”

Watching the deep bond between him and Daddy

Loving my baby girl Abigail beyond a measure I didn’t feel existed after Gracie

Holding her close and feeling her heartbeat against my chest

Staring at her precious face and little body 

Singing her to sleep

Witnessing her first “real smile”

Watching Luke kiss her, love her and protect her

Witnessing Adam fall deep in love with his baby girl

The ability to cherish each little moment and not worry about tomorrow as it has enough worry of it’s own

Feeling the love of family, friends and even those we do not know.

Knowing that God loves us enough to use us to encourage and inspire others leaving us the feeling that nothing is being wasted

Feeling God’s arms wrapped around us and never feeling alone in this journey

 

To finally be able to understand the words “rejoice in your suffering”

There will always be that void of not being able to:

Hold Gracie

Smell her skin

listen to her laugh

watch her grow

and on and on.....

The void cannot be filled with my new blessings however, it is filled with many memories of "indescribable" moments with Grace that will always remain in my heart until we see eachother again and God's comfort helps fill the void and knowing Gracie is safe with him.

I’ve been following a blog of Paul Cardall and like all the other blogs I follow, he continues to inspire me and keeps me focused.  I love this statement he shared:

There will be roads to take, and mountains to climb in our future.  Admidst our future joy, celebration, and happiness, we will face heart-ache, pain, and grief. 

He then quotes Neal Maxwell:  We have a Father in Heaven who loves us specifically and gives us things to do and, because he loves us, will cause us, at times, to have our souls stretched and to be fitted for a better world by coping with life in this world.  

My soul has been stretched and I do feel it is helping me cope with my journey in this world for that I am thankful.

We all make choices everyday on how we will spend the day...I give in to every emotion whether it be to laugh or cry~mourn or rejoice.  Today I’m choosing to rejoice and I am feeling blessed to have such indescribable moments in my life.

Would love to hear about your indescribable moments if you would like to share.  It's important to notice them, embrace them and enjoy them.

Here are some photos of our special moments: 

Luke- is doing really good. Feeding will always be a challenge, but he seems to always take in an adequate amount. He is loving school, soccer and visits from family. He will have his next Dr. appointment October 6th, with Dr. Skalansky (cardioligist).

Abbey-is enjoying the typical baby routine eating, sleeping and occasional playtime. I think she is really loving her family :) If I don't say so myself. She too will be seen October 6th with Dr. Skalansky. Her breathing has really improved whic in return means a tad bit more sleep in the Chez household.

Please pray for their health as the flu season approaches.

Grandpa Jim and Kendra purchased a brick that was placed in fornt of the Angel Stadium in memory of Gracie and today at the game they showed Luke where it was. He is pointing down to the brick that says, "Gracie Chez Love u 4ever." Gracie loved going to the games. She was a fan of every sport Daddy loved. Thank you Grandpa Jim and Kendra it was Very special!

Daddy and Abbey

Introducing Abbey to one of our favorite spots (corona del mar)

Grandma Love

My special guy

Luke's class~The adorable little girl 2nd row with the cute pink

skirt (2nd to left) is Bridget. She is such a doll.  Luke came home and

said, "mommy guess what Bridget asked me today?"  "if I had

Jesus in my heart."  He said, "yes I do." So cute!

The exact thing a mommy would love to hear!

Luke's soccer team

Go buddy!

Water break and pep talk from Dad

Abbey, Mommy and Kendra cheering Luke on from the sidelines

Grandpa was running up and down the sidelines

getting Luke pumped up.  Thanks Grandpa Jim!

Luke was so happy to have you there for him. 

Thanks for stopping by our post and for all the continued 

love and support.

All our love,

Adam, Terra, Luke, Angel Gracie and Abbey  

Back at Home

After a long night at the hospital we are back at home. As for little miss princess, she is doing great! After Abigail's procedure the Dr. came in and said, "good news," words we unfortunately don't usually get to hear. So, of course we were very excited. Then after hearing the news our feelings changed slightly. Sometimes your interpitation of good news varies from a Dr.'s opinion, BUT it was good news.
The results:
Abigail has Vocal cord paralysis and laryngomalacia. The hope is for the laryngomalacia to heal on it's own within a year or so. There could be a chance that it could affect her eating and breathing in the future so it will just have to be monitored. As for the vocal cord paralysis it is uncertain at this time how it will continue to affect her. For those of you who know Luke's voice (a little scratchy) well that is what can possibly happen to miss Abigail. This obviously will continue to be a big concern as we approach another procedure in a couple months. However, we will continue to pray about it and whatever voice miss Abigail has it will be beautiful to us, raspy or not :) Now for the news that was great, she has an adequate airway space. This was very important and we are so blessed that this was not compromised during her surgery. Now we will just need to be extra cautious going into the next surgery.

Abbey is excited to be home and already has been sleeping and eating perfectly. Which reminds me, she is eating so well! It is truly a blessing. The only challenge we have is that she still tires out and the other being, she burns more calories than the average baby due to her heart condition. We will keep an eye on her weight and fortify (add more calories) if need be. We are just so very thankful that she actually has a desire to eat! Luke and Grace never had that, so this is something very new and exciting for us. We pray we continue on this path. There is nothing like being able to feed a hungry child and to see her satisfied. Which may seem silly to some, but many heart moms are all too familiar with this constant struggle. So, we will continue to be back on the path of enjoying being home with our sweet Abbey.

Being at the hospital and on the same floor where Gracie passed, well no words can express how we felt last night. We shed many tears last night and it was such a hurtful private moment. I rather not go into the hurtful details, I am just so thankful that God is sovereign and he lifts us while going through moments such as last night. I sat in the room and thought, Lord I know you took Gracie home to be with you and then you blessed us with another baby girl with a heart condition, I may not understand or ever know why, so all I can do is trust in you and lay my heart and life in your hands. How wonderful to be able to give it all to him. Thank you God.

There is so much more I would like to share but at this moment the only thing on my mind is SLEEP! I'm going to try and get a little before Little man gets home from school.

Thank you for all your support, love and prayers. Also, I am always thanking my friends and family...now I want to thank my extended family. The ones who I share a special bond with, "heartmoms" and my "blogger friends." Many of you I have never met and yet I feel such a special connection with you all. Your encouraging, loving and honest messages mean so very much to our family. Through all of this we feel so blessed to continue witnessing Gods plan that he is orchestrating. What a blessing to know that God placed all of us in eachothers lives. Just beautiful! Your journeys make me cry, laugh, and rejoice. Thank you for sharing your lives and for following ours.

All for now...thank you for checking in. and GOD BLESS!
All our love