Family update

Let's start with the Man of the house (aka Daddy)

-He is exhausted (Abbey is waking up every hour on the hour)

-Has been unable to return to work (because of us being sick)

-Still has not had a chance to unpack

-Has been going crazy living upstairs for the last 5 days while Luke and I have been very sick downstairs

-Is probably planning a secret solo vacation sometime soon :)

Now on to mommy

-Feeling frustrated that I have been sick for soooo long

-Have been so sad that we are finally home with our princess and I can't even get more than 5ft close because we need to try and keep her healthy

-Still have not unpacked

-Have been enjoying time with Luke...finally stepped outside today for a little vitamin D (how do people make it without seeing the sun for so long, I am not sure I could do it)

-Is so thankful that my mom is feeling better and is here helping (lifesaver!)

OK enough of us...now for who you really want to hear about :)

Abigail:

-Had her appointment in LA on Tuesday...Lungs still have too much fluid :( still treating

-Little bit of leakage around the valve (not too concerning at this time)

-Starting to eat a little better (YAAY! Daddy is doing such a great job!

-Back to original weight before surgery (huge blessing!)

-Looking so beautiful

-Missing mommy...can see it in her eyes..."mommy why are you not holding me?" :( (when the fevers stop I think I will be safe to hold her)

-reminding mommy of everyday miracles with that smiley face

Luke:

-Feel so bad I think I forgot to mention the big news....his last echo showed we have another 3 months before they think they will even start looking into a cath (great news!!! Thank you Lord)

-Seems to be feeling better

-So hyper today...Vitamin D has a tricky way of making you feel happy inside

-Saying the sweetest things to mommy .... "Mom I love you the same distance as earth to Heaven" :)

-Is going to be five in 12 more days! I told him I need him to stop growing up so fast! He said, "mom make up your mind....first you want me to eat good so I can grow big and strong and now you don't want me to grow?" I was quick to say...You are right buddy you do need to eat so you can grow big and strong...my mistake :)

-Is really anxious to get back to school (hopefully by next week)

Praying for me to get better so I can be the mommy I want to be...and so Daddy can have a break...and for Abbey's fluid to be removed and to continue on a good road to recovery and for Luke to stay healthy and get back to his normal routine.

Everyone is probably tired of hearing me repeat myself however, I cannot stop...THANK YOU for all your love and support!

Within 48 hours of being home and sick our sweet neighbors who are our dearest friends and like family:

-sent flowers

-brought over chicken soup

-went to pick up my medication

-offered to help with the kids, do laundry and whatever else we needed

Just a little bit of God reminding us..."you will never walk through this alone." Thank you everyone!!!!

All our love

Good News, Not so Good News and Gratitude

Whenever given a choice, I always choose the bad news first. I guess that is because I like to get it out of the way so I can celebrate the good news.

So...let's start out with the...
Not so good News:

-Luke and I are pretty sick..I thought it was just "let down of being back home" but unfortunately, it's the whole thing..achey, headache, runny nose, sore throat, cough. It was literally over night. YUK! I cannot remember the last time I was sick. :( AND my poor Luke...it's hard to see your little ones sick.

-I never got a chance to get the flu shot

-We have to keep our distance from Abbey which is so very hard

-Abbey is barely eating enough to maintain the amount she needs (wondering if she may have a little something?) praying hard that is not the case.

Now for the....

Good news:

-Abbey has managed to take in enough formula to keep us out of the hospital at this time

-Adam is the best Dad ever and is taking great care of our baby girl. Abbey and Daddy are hanging out upstairs while the "germs" Luke and I hang out downstairs.

-We had one really fun day (yesterday) being home before we got sick.

Now on to...

Gratitude:

Gratitude A feeling of thankfulness and appreciation

We have not had a chance to thank all the Doctors and Nurses who played a huge part in healing our baby girl.

"The three qualifications of a good surgeon: He should have an eagle's eye, a lion's heart, and a lady's hand; in short, he should be endued with wisdom, courage and meekness." Matthew Henry

There is no doubt that Dr. Frank Hanley is blessed with all these qualifications and we thank him for mending our baby girl's heart. God has truly blessed him with a special gift and we are humbled to receive his works.

Dr. Frank Hanley, Surgeon

During our stay we were followed by Dr. Stephen Roth, Pediatric Cardiologist and Director of CVICU. His gentle manner and approach on treating Abigial was more than appreciated and we thank him deeply for all his care.

Dr. Stephen Roth

We also are so very grateful for all our other Doctors and Nurses who provided great care and kindness to our family. There were a few who were determined to make me smile and they definitely succeed. We also had the best social worker, Heidi. She listened to us time and time again and was quick to respond to all our concerns. She was always so warm and kind every time she came in to check on us, it meant so very much.

We had over 8 different nurses and we loved them all.

Below is our Nurses, Ben, Jackie and our Social worker Heidi

Now for all of you....thank you from the bottom of our hearts for carrying us through a difficult time. Your love and support is such a great big blessing to us!

Lastly and most importantly, I would like to thank God for providing us with the courage to face each day, the strength to get through each day and the Grace to carry us through it all. We are forever grateful and thankful to our Lord, Jesus Christ.

A thankful heart is one of the primary identifying characteristics of a believer. It stands in stark contrast to pride, selfishness, and worry. And it helps fortify the believer’s trust in the Lord and reliance of His provision, even in the toughest times. No matter how choppy the seas become, a believer’s heart is buoyed by constant praise and gratefulness to the Lord

John MacArthur

While we were in the hospital I was given a special gift. I was able to meet a heart mommy, Lindsey, her precious little guy Drey and her mother Kathy. There was definitely that "instant mommy bond" and Adam still jokes to this day about my new "BFF" God had us share a room for a reason and I feel so blessed that we were able to meet and look forward to our new relationship as "bff's." ;)

Lindsey and I at the hospital

Also, had the opportunity to spend time with a sweet family who I have been a follower of their blog. It was such a special blessing for Luke and I to spend time with Sarah and Callie. We picked them up and went out for a little fun.

Went to Create It and had some fun painting

What better way to end a good day then with a Kara's cupcake

Back at home enjoying life's great simple pleasures....

Playing with toys and playing some football with Daddy

Her favorites...chair, bath and snuggling on mommy....my favorites too!

Loving each moment of being back to our routine, except for the whole sick thing...not loving that too much.

We will take what we can get. Sending all our love...to all of you...Chez Family

We are back home and getting somewhat settled in. The living room is slowly but surely starting to look a little less of a war zone. We felt a little hesitant to unpack, I think that always is a fear when you first bring your little one home after such a procedure. Part of us wants to be so excited to be back home, but the other part knows the reality that Abigail is still in recovery. However, make no mistake that we are enjoying every little moment of being back for now. For Luke it's like Christmas all over again. :)

Discharge Day:
When Abigail was released there was still some concern with the fluid around her heart and lungs. We left the hospital on quite an aggressive plan of diuretics. The following day after discharge we visited the hospital for a clinical appointment and her xray looked a little better than when she was discharged, so they felt comfortable in giving us the OK to head home as long as we were seen by her cardiologist next Tuesday. Last night Abigail started declining on her amount of intake (formula) we figured it was just the change of leaving the hospital and the drive home. Unfortunately, she is still on a downward spiral and there is concern of dehydration. We were actually heading down to LA today when we received a call from her primary physician that followed us at LPCH and he suggested we remove the diuretics and see how she handles it through the night. So here is where we are:

-If Abigail does not improve this evening we will need to go to Childrens Hospital LA for an assessment and possibly some IV fluids to see if it perks up her appetite.
-if that is unsuccessful we will then possibly be heading back up to Stanford

We remain cautiously excited to be home, but realize there could be a possibility that we may be heading back to the hospital.

There is still so much more I would like to share, including photos however, right now I want to spend as much time with the family as I can in case we have to return to the hospital.

All our love,

Chez Family

My favorite words

We are heading home!

I will give an update tomorrow. Nothing like feeling happy inside. :). Thank You Lord!

The Power of Prayer

"Effective prayer is prayer that attains what it seeks. It is prayer that moves God, effecting its end."

Charles Finney --

Prayer is so very powerful. It's amazing to see the work of God through prayer.

Through all of your prayers~

Abigail

-had a full repair (she will need more surgeries when her valve needs to be replaced)

-there was not much more damage to her vocal cords

-she was extubated

-her lung is no longer collapsed

-she is IV and Chest tube Free!

-She is starting to eat well

-she is squealing with excitement when mommy makes her laugh

-when she opens her eyes and sees mommy, daddy or grandma's she has a smile from ear to ear

-God has protected her

The most difficult part of prayer is that our prayers are not always answered in "our" time, but yet God's timing and all according to His plan not "ours." Waiting is very difficult especially when you want good results right away. Praying about something and not seeing a change in 5 days, 5 months or 5 years can be very wearing on the soul.

Prayers we are still waiting to be answered...

-Wanting to go home, but now will be here longer based on new finding

- Getting the fluid off of Abigails lungs and just in...new perfusion findings

-Luke needs to get in for an echo... :( we are not too far away from his surgery

-Luke's feeding issues. He has regressed once again and occasionally tries to bring his food up. (we have prayed for this to end for....well 5 years...still waiting)

Kind of our life......Good News/Bad News

We keep reminding ourselves to "Trust in Him at all times" Psalm 62:8 Trusting in him is not the hard part, the hard part is waiting on him. I read this the other day:

But we have to remember that God's timing is different than our own. He sees things from a different perspective and sees the whole picture, not just what we want, but what is best for us in the grand plan for our lives. All is part of a divine order and will be done in its own right and proper time. Of course, when we are hoping, praying and waiting for something, it's easy to forget this. After all, waiting is "remaining inactive in one place while expecting something." And being inactive means feeling powerless and at the mercy of the world - nobody likes that feeling. But we must keep in mind God's greater plan and his perfect timing:

"We know that all things work together for good for those who love God, who are called according to His purpose."
Romans 8:28

It's not so hard to obey all our commands when life is going smoothly, but when you are faced with trials and are receiving negative news time and time again it's much more difficult. You can still praise God but it never makes you exempt from hurting and struggling as you continue on. I'm always praying for ourselves and other families that have to be on there knees daily in prayer because trust me it is not an easy task. **I'm trying to actually make a point here, but I'm having trouble tying it in, so consider it a rambling session (happens often when you don't have much time to think or when your thoughts are all over the place)**

I always think back to a prayer that I prayed about 6 years ago, and sometimes I think what was I thinking? And other times I think, I am so thankful for that prayer for who I have become and for where I have been on "my walk."

This was the prayer I prayed:

Dear Lord, I know I have not been the woman you have called me to be. I feel such a disconnect with you and my faith. It's not that I doubt you and your wonders it's just that I feel a little bit of emptiness. You have answered my prayer with an amazing husband and I am so happy, but what I ask is that you give me a way to strengthen my faith and most importantly to use me in a way that can glorify you.

Well as far as believing in the power of prayer....he definitely answered that prayer... and trust me it would not have been my plan if he would of asked. Frankly I think I would of said, "are you kidding me, absolutely not!" Thanks Lord, but I think I will pass on that one...can you please give me a different path that I can be affective on?" Can you use someone else or give me an easier path with less hurt and pain. That's just be being honest. But the truth is, I was not saved before and know it's so different...I feel saved and I have quite a bit of work to do and I know he is not done with me yet. Which actually scares me, but I will continue to trust in him. Trusting in God is a gift and being able to get through things in life without wanting to give up and crawl in a hole is also a gift. It is called God's Grace.

I would like to end on a request for prayer:

Please pray that in Gods timing he continues to heal Abigail and that all the fluid is gone from her lungs. Also that the new finding is not a Chylous leak.

Pray for Luke's echo to go okay and that we may have some time at home together as a family before heading back in for Luke's surgery. Also, that his eating will not continue to get worse.

Thank you for sharing this journey with us....I have met so many amazing people along this path and I know I would of never had the pleasure had I not traveled it.

All our love

The Power of Prayer......Thank you for all your prayers!

9 days post op

So sorry it has taken so long to update. Since I last wrote...I left the hospital Monday evening for a while and Adam and I took Luke out to spend some time together. Nothing like fresh air and hanging out with my boys. Then much later that evening, went to our place physically and emotionally exhausted.

Said a prayer that night..."Dear Lord, the moment Abigail was put in my arms I thanked you for blessing Adam and I with her. I remember telling you that we know she is your child sent to us and we pray that you always keep her safe in your arms. We know she is safe in your arms, but Adam and I feel so weak right now and we need you to please place your healing hands on our baby girl and please start healing her little body. I also ask that you help Adam and I to feel the strength that we feel we no longer have." Amen

SO...I could not sleep so I decided to turn on my computer. AND there it was a message for my sweet friend Kat she reminded me (in Kathie version) about when the disciples were in the raging storm "freaking out" (she made me smile by saying that) and Jesus was just sleeping. The thing is, Jesus was there the whole time, it was his perfect plan. Maybe he was just waiting to see what they would do. She went on to say:

They cried out to Him. LORD Save us. He did. Who is this man? Even the winds and the waves obey him? He is the man, the one who holds Abby dearly, who loves her a gazillion times more then you do. Who hold her life, her surgeries, her lungs, her heart in His hand and yet still has room to hold you tightly under his wing as if to hold you like a newborn and comfort you as you want to comfort Abby.

So, after reading that I was finally able to sleep. I was reminded:

1. God has never left our side. Every time we have felt weak, he has used each and everyone of you to send over notes validating our feelings, loving on us, encouraging us and praying for us. He has picked the perfect time for us to receive each note. Another perfect example of "if you just have faith."

SO....I woke up 5 hours later and Adam said bring the bottles and pacifier, she just was extubated! Yaay! Thank you Lord. So here is our recap...

Tuesday-Extubated, Left Lung was doing better, having withdraws from medication (so sad to witness) very lethargic. Not to interested in food. (who would be after having a breathing tube for 5 days) She remained stable and they kept her as comfortable as they could. They removed all drips.

So, we tried to stay focused on the blessing of the day "extubation" and prayed that she continued on the path of recovery. Other great part of the day was receiving a package at the hospital from our dear friends (Gates Family)....The largest box of Jelly Belly's I have ever seen! Thank you Gates family, the best sugar rush ever. :) and Luke loved the puzzle. Then got a very special visit from Moriah's daddy, Justin. I was so excited to see him and even more excited to give him a big hug. I truly adore the Nelson family. Missed seeing Victoria and still dying to give Moriah a hug, hopefully soon.

Wednesday-mostly all lines removed except for two and one chest tube. Moved to Intermediate ICU, Unfortunately, left lung partially collapsed, starting to notice possible damage once again from breathing tube, chest tube is causing so much discomfort, developed yeast infection, still on oxygen and doing a little better on feeds. I was sad to leave the CVICU because I had just met a heart mom (Lindsey). However, I know we will be staying in touch...it's that instant bond you find from one heart mommy to another.

Thursday-Not too much has changed accept our frustrations. :( Abigail seems to be having less withdraws which is good and more interactive. Best part of the day, she finally gave a little smile.

Friday-Left Lung is still collapsed but is looking a little better. Only two things left in, Chest Tube and IV. The Chest Tube my be in for a few days to make sure she does not have a Chylous leak. Doctors are ultra conservative here. Which does not mean that is a bad thing, just not what we are used to. LA is much more aggresive, good or bad...not sure? Just takes some getting used to.

Unless something unforeseen should come up and we pray that it does not we might be leaving the hospital by next Wednesday.

I'm not sure how some families do it with out support of family and friends near by, but we feel so very blessed for having such support. Our moms have been here day in and day out. Adam and I are not the best "kids" under pressure, but our moms love us unconditionally :) and are doing so very much for us. I'm trying to figure out where I can send them and then I am going to figure out how I can Tag along.

My little guy Luke...Oh how I miss him. Adam comes in for the night shift so I am here all day and do not get too see him much. However, he is doing great and loving being spoiled by his grandma's. I have a feeling it is going to take weeks of boot camp to get him back. He was so excited the other day when he opened the mailbox and received mail from his friends at school! Thank you to the mom's at St. Pauls....so sweet! Luke's school has been so supportive during this time with all their love, prayers and support. Thank you!!

They called Abigail a "He" one day...so mommy took

care of that....girly sign, pink bow and pink blanket.

Still very medicated, but mommy wanted a picture of baby girl extubated

Our dear friend Justin

Thursday..great to see her finally grabbing her toys!


Luke enjoying one of the beautiful parks in Palo Alto


HMMM....where are my Grandma's? Anybody

know where the nearest casino is?
Maybe I can use my "casino" finder glasses



Thanks for checking in...all our love..Chez Family

Warning: should not "blog" while under the influence of the hospital

I've wrote at least five beginning sentences and I keep hitting delete. Must be exactly why it has taken me so long to update on Abigail. Hospital stays are so incredibly stressful and when you mix lack of sleep, bad diet, anxiety and the roller coaster ride of going from one good hour to an awful hour it can take an incredible toll on us.

Our faith never waivers. However, when you are at your weakest point the enemy attacks. The enemy at times may try to control our thoughts making us feel discouraged, weak, frustrated, angry, feeling like we want to give up and many more, but he never takes residency in our heart. So while we may feel those normal human emotions, and unfortunately we have been feeling them so much the last two days, we know that in time they will go away. God is in full control and he knows we are not always strong, so when we can't be...HE Is.

Our trials and tribulations list...3 kids...8 open heart surgeries....8 caths....3 CT scans...3 upper GI's...Too many GI tests to count....and many other tests. Oh and did I mention all in a 4 1/2 yr period with maybe a couple months (if that) in between. AND hearing those words that change your life..."your child is not going to make it," as you feel your heart and soul crushed.

Please understand I'm not trying to play the "woe is me" card. I guess I'm mentioning it for two reasons. 1. It makes me feel better about falling apart sometimes, it gives me that "it's OK" feeling. 2. Through all of it I still want everyone to know that God is good ALL THE TIME and he can lift us up no matter what the course is. I mean look at Job in the Bible....WOW talk about suffering. AND trust me I am fully aware that it could be so much worse. OK...I'm spending too much time on explaining this. sorry.

Guess this is the reason why I am feeling this way now....

Abigail has had quite a few set backs the last few days. Along with the setbacks, we have had to witness things in the room that we have not had to before. We have never been through such a difficult recovery.

-She is still intubated

-Her left lung is still collapsed

-They have found that during her surgery her Thoracic Duct was possibly manipulated

-She still has two chest tubes, main line, arterial line, pacing wires...pretty much only two things have been removed.

-They have had to bag her a few times as she has stopped breathing and turned completely purple

Today was a very difficult day...OK they all have been, but today I was unable to control the tears. They had ordered a Bronch to check her airway space and I chose to be in the room at the same time. I wanted to be there incase something went wrong, since she is at such a delicate state.

When you are watching your child hurting it's so important to tell your self to just "breathe" it seems so simple right?

Well...I had to put a mask on which did not help the fact I couldn't breathe....

then I did what I always talk myself out of....

I went down "the path" of....

Abigail should be at home not lying there with all her tubes as they have her completely sedated with crazy strong drugs.... she should be at home cooing, laughing, playing, making those milestones we love to witness as parents....

The Nurse was so sweet and said, "maybe you should step outside"......the tears were streaming...

Thank goodness I listened, because at that point I could not breathe! I finally took a breath and thought....OK...do not pass out! ( I know it sounds a little dramatic, but...well it was for me)

Thankfully I did not. My walls just had come crashing down...my strength was not there. I had my moment....I still think I am...but I know God will carry me through and give me what I need to recover.

SO..I'm thinking right about now, that there should be a rule about "blogging while in the hospital" I'm going to make a note to myself after this update:

WARNING: Do not "blog" while under the influence of the hospital

SIDE EFFECTS: Might cause concerned family and friends

LONG TERM EFFECTS: Need not to worry...God is in control and will take care of it all, "WE KNOW."

Please help us continue to pray for Abigail's recovery.

Lastly, next update will be on my adorable little guy...who is loving spending time with Grandma Laura and Grandma Marsha. He wants Grandpa Jim and Papa Dave to come back soon.. :)

Sorry one more rambling session...remember when I said I wish there were words that were more powerful than thank you to express our gratitude for all your prayers and comments? Well I found this quote....

The smallest act of kindness is worth more than the grandest intention." Oscar Wilde

Love, the Chez's

Remembering Gracie

Dear Gracie,

I cannot believe it has been two years since mommy had to say goodbye. The night you went to be with Jesus I spent laying by your bed with a broken heart. My prayer was always that God would "heal your heart" HE answered that prayer, as I know you are know perfect in Christ, mommy just had no idea it would not be here with me. I miss your beautiful smiley face, the smell of your hair and skin, holding your hand while you fell asleep, reading you books, your cute little walk, your spunky personality, my favorite (dancing as I held you to "it's a wonderful world") and mostly how you made my heart stretch with Love for you. You are my little princess and not one single day goes by without mommy missing you so very much.

Your daddy misses you more than words can ever say. His heart was forever changed since the day you went to be with Jesus. You were his life, his everything....daddy finally had his "daddy's girl" His love for you ran so deep. He loved to hold you tight, here your little footsteps as you ran to jump up on the bed to give him a morning hug (first), when you sat with him and watched all his favorite shows, he will not admit it, but he loved that you were fiesty like mommy and mostly how you looked into his eyes. Sometimes, I catch a tear run down his cheek and I know it's you he is thinking about. You stole his heart and he thinks of you every day.

Mommy and Daddy miss holding you so tight

but are so thankful Jesus has you wrapped up in his

until we see you again

Ohh and your brother...where do I start? It's amazing the love he has for you. His prayer every night consists of, "please give Gracie a kiss for me." He occasionally will ask mommy if he can go to Heaven now and why you cannot come back home with your family. Mommy bought him a book called "Someday Heaven" that helps answers some of his questions....he loves it! He loves to look at pictures of you and his favorite is when mommy and daddy share stories about time you were together. He too thinks of you so often.

Mommy tries not to let her mind go to the "how things could of been" but unfortunately there are times I try to imagine what kind of sisterly bond you and Abbigal would of had. Now I just hold on to you will meet someday and until then I will always tell her about you. You would just love her...she is a part of you and on occasions I get a glimpse of you through her.

Of course all your grandparents miss you too. When you are mentioned everyone gets a little tiery eyed as they too long to hold you and play with you.

You were grandma Marsha's special girl

you shared a common bond for the love

of horses and all animals...grandma misses you so much!

Papa Dave...thinks of you often

Big Al loved to read you books and watch his sport games with you

Grandpa Jim adored you....he loved playing and making you laugh

Kendra loved to spend time with you and misses you too!

Mimi loved all your special moments she had with you

Grandpy loved you too!

It's hard for mommy to talk to Grandma Laura about you because of the special bond you to had. I'm always praying that Grandma has peace in her heart about you being in Heaven and that HE gives her comfort when she misses you so much. She has a great big picture of you right on her dresser that helps her start her day. Grandma Laura was one of you biggest fans and she misses you so very much!

There are so many others that miss you dearly. As mommy always shares...you touched more lives than most do in a lifetime.

Who could of not been touched with a face like this.......

Love you Girly!!

Although those she left behind feel the pain of sorrow and loss and shed

many tears we are comforted with God's infinite grace, mercy,

compassion and peace. Most importantly we can be comforted with knowing...

Gracie did not loose her life, but rather she has gained eternal life.

Baby Steps

We are starting to move very slowly. For the next 24 hours they will be changing up some meds, starting her on diuretics, and possibly removing her trans lines. Sadly her right lung is partially collapsing, however they have strongly expressed this was to be expected with being on bypass for a longer period of time. With help of the ventilator and the diuretics removing fluid it may start to balloon back up.

She opened her eyes really big today for a quick moment and started to squirm. I'm not feeling prepared for when she starts to wake up, because that is when mommy mode comes in and I want to pick her up and comfort her. It's still going to be a few days so I need to focus on here and now. Which we are trying our best to do.

It's so important to remain in Gods word at a time like this. I know we always should, but especially during a time like this. It keeps you from trying to handle it all on your own.

The Chaplin came in today and shared something a heart transplant mom wrote:

When Jesus is Lord,

In every heartache, healing

In every care, comfort

In every trouble, triumph

In every problem, peace

In every obstacle, opportunity

Loved those words! Then while I was reading a book by John MacArthur he shared at least eight purposes behind the Lord's allowing trials and tragedies to come our way:

1. To test the strength of our faith...Check

2. To remind us not to let our trust in the Lord turn into presumption or spiritual self-satisfaction...Check

3. To wean us from our dependence on worldly things....Check

4. To call us to heavenly hope...BIG Check

5. To reveal what we really love...Check

6. To teach us to value God's blessings...Check

7. To enable us to better endure future trials and difficulties....Still working on...

8. To help us develop "enduring strength" so we might be of even greater use in God's Kingdom...praying to have the opportunity

Had I not been through these trials I highly doubt (for me) that I would of been able to check them off. What a blessing I can.

Today we are still feeling emotionally an physically exhausted, but at least we have been fed by God's word and strength and for that we are thankful.

A mother's Love

[love] bears all things, believes all things, hopes all things, endures all things.

1 Corinthians 13:7

Things have been pretty quite today. After two surgeries in a 12 hour period, her body needs to be in a "quite recovery stage." Therefore, she is heavily sedated. The good news is her heart function is doing very well. The not so good news is her lungs are at a very delicate stage and need extra attention to recover. They are trying different settings on the ventilator in hopes to help her along this process.

Currently she has:

-3 Chest Tubes

-Pacer wires

-Main Central line

-Arterial line

-2 trans lines

-2 iv lines

-breathing tube

-catheter

They are not going to try and make any changes for the next 24 hours. She is no longer in a paralyzed state, but again she is heavily sedated. I'm trying not to shed so much tears, but they keep coming. I've been holding her hand for the last 6 hours and every now and then she will give me a little squeeze. I like to imagine that Jesus is giving her sweet dreams. It was so sweet how some of you wrote about Gracie being present looking down on her sister. It's made me think about how Gracie could be right next to Jesus saying please take care of my sissy...and us for us...we are just trying to "breathe"

I wish there was a deeper word for "thank you" so I could express how much all your sweet words and prayers mean to us....until I can think of another word...thank you. We are feeling very loved and it has helped carry us through.

I want to end on a beautiful prayer our sweet friends Justin and Victoria sent to us.....

Jesus,

The Chez family needs you right now. They are so tired. I ask that the recovery would be quick. That there would be no more bleeding. Be so present and real to Adam and Terra so that they can be restored today. I ask that Abigail would see your face. That Your peace would consume her. More than anything, I ask that You would be seen through this situation. That people would see You and desire You through the Chez family. Amen

Out of surgery again at 1:30 am

Prior to her sugery Abbey developed extra blood vessels. Her heart was working over time trying to create oxygenated blood. They were bleeding but once Dr. Hanley took care of them and closed her up they stopped. Adam is with her as I get some rest with Luke. Will update later today.

12:15am Back to OR :(

Abbey has lost too much blood since she came out of surgery, so she will be going back into the OR. Dr. Hanley should be here shortly. He will open her up to see where the problem is. Their hope is that she does not have to go back on bypass.

We will continue to update.

Out of surgery

Just met with Dr. Hanley, and many prayers were answered. (love the power of God and prayer)

-He was able to perform the complete repair (thank Jesus)

-She was on bypass total of 5 hours

-The PA's were a little more complex then he anticipated, but he was successful in the repair

-The VSD was closed and we already have the conduction (heart is beating on it's own)

-He was able to put in a 16mm conduit (great news!) if the valve does not deteriate and we do not face other issues with it, then it could be 3 years until it needs to be replaced (positive thinking)

-There was a new finding of an ASD, but he was able to close that up as well

-He was barely able to close up her chest....he felt comfortable to do so, but did let us know there could be a small possibility they may need to reopen. Praying hard this will not need to be done

-Due to long time on bypass she will need extra support and recovery will be a longer process

I'm wishing we were feeling as positive as we were this morning, but the day has taken all our reserve out of us and we are feeling extremely emotionally and physically exhausted. AND the hardest part is yet to come....seeing our baby girl. Tears are rolling down my face as I write this, because I know what we will be walking into.

We are rejoicing for the successful repair, but we know how quickly things can change AND recovery is a whole different process.

From the bottom of our hearts we thank you for all your sweet words and prayers....please continue to help us pray for a smooth recovery.

4:15 Still in Surgery

And still on bypass :(

Surgery Started at 10:00am

At 9:45 Dr. Hanley was in to meet with Adam and I, then was off to the operating room. Still no news, your words of encouragement and prayers have kept us going.

Thank you!

Surgery Tomorrow

On one of my favorite sweet young love movies, "A walk to remember," Mandy Moore's boyfriend asked her how does she know God and her faith is real? She replies back to him..."It's like the wind...You can't see it, but you can feel it." I love that description.

I may not be able to always explain my faith perfectly to others, but I am so thankful for the blessing to feel it in my soul, which of course is the holy spirit.

Although, we have our faith it does not make us exempt from trials and from failing is so many areas. Being a Christian is not easy, God never promised it would be. To be a Christian we are to act "Christ Like" and considering Christ was perfect it's a pretty tough act to follow.
One thing we are so thankful for is, never doubting the hands of God and his plan. Even though we have walked down this very difficult (at times) path with so much hurt and pain, I still trust in him with my whole heart. God is soveriegn and I trust that this is all for his glory. I'm thankful for all he has given us despite our circumstances.

Again, we are not exempt from hurting and feeling frustrated at this path we have to travel. Tomorrow will be very difficult for us and our hearts will be so heavy as Abbey is taken into surgery, but I know God will help us to breathe our way through. We trust in him and know that although we will not be by her side during surgery, HE will. AND we will keep reminding ourselves that throughout the day. He will also be holding us up as we walk in to see Abbey when her surgery is complete.

For those of you that are in to specifics, here are the details of the surgery:
-Approx 5 hours up to 13
-She will be on bypass

-She will be receiving up to 6 pints of blood (thank you to our donors)

-Dr. Hanley will first open and repair her pulmonary arteries (this will take the most time)

-Then if he has time (this one of our big prayers-for him to have the time) he will close up the Ventrical Septic Defect

-Then move on to putting in her pulmonary valve

-The biggest concern for time, is we do not want to keep her on bypass for too long

-Then if there is not too much swelling he will close up her chest, if there is too much swelling she will come back with her chest still open and surgical tape over it. Which happened to Gracie (very difficult to witness, no parent should have to)

Depending on how much he is able to complete, will determine our length of stay. It could be two to four weeks.

Our Specific prayer requests are:

-That he is able to do a complete repair

-That her voice box is safe

-That God comforts and protects Abigail

-That God gives us strength and comfort

Sorry...I know...long request.

I cannot tell you how blessed we feel that Dr. Hanley will be performing this surgery. Not only is he the most brilliant surgeon you can tell he cares for every child. You can't help to look into his eyes and know your child is in amazing hands.

During surgery I know so many of you are praying for us and this too is hard to explain, but we can feel it. I know it sounds weird, but if you have ever been in a situation where much prayer has gone out to you, then you know exactly what I mean. We cannot thank our family, friends and blogger family enough for all your continued love and support during this time.

Also, big thank you to our moms who once again are here to support us. We could not do it without them. Not only are they with us, my mom drove us up in the motorhome! Like mom has always said, "there is nothing a man can do that I can't do better. :) It was a great memorable road trip! Thank you Mom and Marsha! Luke is so excited to have them here and cannot wait until Grandpa Jim and Papa Dave arrive tonight.

Surgery is scheduled for tomorrow, Wednesday, June 6th at 8am. We will do our best to update as soon as we hear any news.

Here are some pictures of our trip:

Our driver....sorry buddy you still have many years until you get behind

the wheel of that bus

Daddy helping us get settled before he headed out

for his quiet drive without the kiddos

Getting ready to go

Love my kiddos!

Abbey and Grandma Laura

Luke wanting to drive with Grandma

Grandma Marsha and Abbey

Grandma Marsha and Luke

Hey brother can I play with that?

We wanted to take Luke out and spend some time together

before hospital life

All our Love, The Chez's

Sweet Baby Abbey our prayers will be with you

and we know that God will protect you tomorrow

when Daddy and mommy cannot....

Love you princess!!!

Meaning of Abigail: Father in Rejoicing

Happy 2010

Originally I was having a very difficult time with all the hype of the New Year approaching. I mentioned to Adam...how are we suppose to celebrate the New Year with knowing the first week Abbey would be having open heart surgery, nine days into it would be the second anniversary of Gracie no longer here with us and lastly 30 days into it we would be finding out if Luke is possibly going to be needing surgery soon.

Then after spending enough time being a little sad about what was to come, we decided that we need to focus on all the wonderful blessings we had last year.

Some of those blessings were:

~Our new baby girl, Abigail

~Luke was able to receive a stent and hold off on surgery

~Luke is eating “big boy food”

~God provided us with new strength every morning to get through the days without Gracie

~We continued to realize how incredibly blessed we are with amazing friends and family

The list is long and I could go on forever.

So while it is going to be a hard month to start, we will try to focus on the fact that the Lord will be working on our lives through this and we will still be able to witness our sweet blessings through our good and bad times in 2010.

Hoping the New Year brings you much love, happiness and that you are filled with many blessings!

Promised that I would post some photos of Christmas....

Went out to see Christmas lights with our neighbors

Our new neighbor Carly and Luke

She is such a cutie and so sweet...Luke adores her

So OC uses a little bit of fake snow....kids loved it!

Luke and I went out with the Higgs and other family friends

to Irvine Park to see Santa.

Riley, Luke and Kennedy

Tanner and Luke

Kennedy, Luke and Tanner

Group shot with Santa

Luke, Blake and Jacob on Christmas Eve at Ray and Lori's

Our neighbor, friend and now family :) Ray

Luke loves Ray and Lori so very much!!

Lori and Luke...Sweet photo

Abbey enjoying Christmas day :)

about the only time she sleeps...in mommy or daddies arms...

hmm....spoiled??

Luke showing Kaelin his new ride

Garrett and Luke

The girls hanging out while the boys played football

Kendra, Abbey and I

Now in the backyard for some basketball

Grandpa Jim, Kendra and the kiddos..Abbey was really smiling for mommy

Grandma Laura and her girl

Papa Dave and Grandma Laura

Unfortunately, Grandma Marsha was not feeling well this Christmas

so they were not able to make it. They were very missed.

My hubby and I

Thanks for checking in...all our love,

Chez Family