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

Back to the Hospital

I've been wanting to update everyone on how our home stay has been.  Also, wanted to share how much we have been loving Abbey being at home with all of us and wanted to share some photos.  Unfortunately, I have not had much time and now I am having to send out an update I wish I did not have to. We are heading back to the hospital and unfortunately not just any hospital, but CHOC (children's of Orange County)  we have not been there since Gracie passed away and I've always shared how much I never want to have to return there again. However, Abigails breathing has not improved since we have been home.  After visiting with Dr. Allevato (kids Pediatrician) she felt concerned with the breathing so she contacted an ENT (ear, nose and throat Dr.)  We had our appointment with the ENT today and he was also concerned and expressed this should be looked at immediately.  So, we scheduled her Laryngoscopy and Bronchoscopy for tomorrow (Thursday @ 4:15pm)  she will need to be put to sleep for this procedure and we will need to stay overnight.  Of course we were very disappointed, for a few reasons:

1.  We expressed our concern with Abigail's breathing to LPCH before leaving and they never suggested an ENT even though we were very concerned.  They said it should heal on it's own and to wait 3-6 weeks.  Which the ENT Dr. here expressed they should of had her seen immediately) ughh so frustrating!

2. We have to put Abigail to sleep once again. :(  This is so heartbreaking that she has to go under so soon after surgery.

I know this seems little compared to all we have been through, but we are just feeling frustrated because this should of been done earlier and we pray that everything goes well as our experience at this hospital "for us" has not always been great.  AND being there is just going to be very difficult for the both of us.  On January 9, 2008 when we walked out those doors without Gracie I said to myself I hope to never be back here.  BUT going to LA would be a little too difficult trying to get things done asap and apparently that is how quickly this should be done.

Please pray for a quick procedure, quick recovery time and that there is not too much damage done to the airways. Also, please pray for mine and Adam's heart to be guarded and the strength we will need as we walk back into the hospital where we had to say goodbye to our sweet Gracie.  Thank you for checking in and for your prayers.

Will let you know how it all goes.  After we get through this I will send some recent pics and updates

Lot's of love,

Chez Family

Home sweet home

We feel so blessed to tell you that we arrived home late Saturday evening.  Although we have to return in two months for her second open heart surgery, we are excited to be back home.  Luke, Grandma Laura and Grandma Marsha share the same excitement with us.  Abigail is doing well.   Unfortunately, she struggles while eating, which we are all to familiar with.  She still seems to be very uncomfortable and very sensitive to the touch.  Also, she is having quite a bit of difficulty with breathing.  When they extubated her they believe there was some damage done to either her vocal cords or it could be swelling in her air ways.  We were told to wait 3-6 weeks to see if it clears.  This of course is extremely stressful as we watch her try to sleep and eat. It’s like she is just gasping for air.  Please help us pray that this will heal on it’s own and that her vocal cords were not affected.  

We will also need to pay attention for heart failure and many other concerns until her next surgery.  Dr. Hanley has asked us to be extremely cautious in trying to avoid Abigail getting sick, it could be very dangerous with her current repair and could effect the next surgery. Which is difficult considering we have Luke (4) with school starting and of course anxious to get back to visiting friends.  Poor guy, he thought he used to wash his hands alot.....wait until now.  Lucky for us he is really good about not touching sissy’s face.  He loves to rub her head, tummy and kiss her forehead (which melts our hearts) 

We are so excited to see everyone and welcome visitors however, as for the little ones we may have to hold off for a few weeks until Abbey can gain her strength.  We need to keep her healthy and strong.

We will be visiting our cardiologist within a week and will need to be followed very closely.  I will send an update after our next hospital visit.  Also, when I get a chance I will send some updated photos.

Thank you for lifting us up in prayer!

All for now....

Much love, Terra

Getting Miss Abigail ready for her departure

Ok...Daddy and Mommy time to go

Yes, I am completely aware how tired I look 

however, I had to post this picture

 because it was such a great moment

We woke Luke up and told him he had a 

surprise in the living room. He was so excited!!

Finally....sleep without machines beeping

Lori and Ray meeting miss Abigail

Grandpa Jim and Kendra

I usually try to stay away from writing an update when I am feeling the way I do, which is a little broken. The reason being, is that we all search for happiness right? No one feels comfortable when hearing that someone is hurting, sad and feeling broken. We all search for happiness, whether it be with our friends, family, children, work and so on. Being happy makes us feel good and hearing or being around those that are sad makes us sad. Which is why I was uncertain about writing this, I don’t like anyone to feel bad or sad for us...it’s much more rewarding to hear how great we are doing, how strong our faith is and how it’s all going to be ok. But reality is that is not how we feel “all” the time. This life hurts at times, but “it’s our life” and there will be times when we feel broken and times when we are rejoicing. Our purpose of this blog is to share our journey through it’s difficult and wonderful times.

After Abigails surgery as we were walking into the cvicu I could not help to feel as if the strength I had was completely leaving me with each step I took. When I walked through the door to see the familiar sight I felt my body give in to everything. How could anyone ever get used to it.
Also, as I mentioned before, we used to be a little stronger but after Gracie we just don’t carry the same confidence that everything is going to be ok. It just might not be ok....and I guess that is where God wants us....to be completely reliant on him...walking into to this how could you not. It’s just sometimes we don’t feel the strength and we feel like it’s just “enough” and that is where we are today.

This is a very private picture for me and I was very hesitant to put it on the blog, becuase she is in bed so vulnerable with chest tubes, breathing tubes and a total of 5 IV’s. However, it gives you a glimpse of what many families have to face....there child laying in a hospital bed. It’s like this whole seperate world in a hospital....and it’s important to realize how precious all our lives really are. When I look at Abigail here the only thing I hold onto is that I am looking at not only my child, but ultimately God’s child and although she may suffer her on earth I know God is holding her through each moment.  

The next evening while being at our baby girls bedside we heard a mother and father down the hall screaming with a desperate cry, they had just lost their 12 yr old (or so) daughter. That’s when all the walls came down as the cry was all to familiar and made me think of the day we had to let go of Gracie.  I wish we had the strength we used to have, I pray for it daily.  I know God will sustain us, it’s just hard being here right now.
Abigail~now has pretty much all her tubes and lines out and is just trying to adjust to her repair.  We have had a few setbacks and have struggled watching her loose complete interest in feeding, she struggles just to get an ounce down,  she has lost over 1 1/2 lbs, her eyes are sunken in and her body is so frail.  We had just 8 days of what it felt like to have a “healthy” baby who was completely thriving, making baby sounds, eating, and sleeping.  It’s hard to see her so different  now, it just breaks our hearts to be back to this place.   
One of the many difficult things we are now dealing with is knowing that we are going to be back  here in less than three months to go through the same thing except next time it will be a full repair which will be even harder on her sweet little body.


Our dear sweet friends the Nelsons shared this on our blog the other day...
“Even youths grow tired and weary,

and young men stumble and fall;

but those who hope in the LORD 

will renew their strength.

They will soar on wings like eagles; 

they will run and not grow weary,

they will walk and not be fain.” -Isaiah 40:30-31
I keep it close to my heart..thank you for sharing.  You guys are inspiration and we love!

Please continue in helping us pray for Abigails healing and also for mine and Adam’s heart to stay guarded and fixed on the Lord.

Thank you for checking in and for pouring all your love out.

Lot’s of love, Terra