Feeling Blessed

Our Luke is doing great! He is loving school and enjoying time with his teachers and friends. He is now playing T-ball and doing really good. He turned five this month and is definitely acting like a five year old. He is like a sponge and wants to know everything! He is amazing us everyday with the things he comes up with and at times he is super funny with his comments. He is growing up too fast, so we are trying to enjoy every minute with our little guy.

Little Miss Abigail is doing great as well! She was born a "happy baby." She loves to smile and laugh. She is getting so strong and loves to roll across the enitre room. The biggest blessing is she is doing so much better with her formula. Today we were told she weighs 17lbs! I pray daily about how wonderful it has been to feed Abbey. We have an appointment with her cardiologist next Thursday, however, she seems to be doing wonderful. The pediatrician said her lungs sound great which we are hoping means that her lungs do not have fluid around them. She is such a little blessing and her personality is developing daily.

With everything going so well, there are times when my heart feels so happy. However, at the same time it always is thinking of Gracie. As Luke grows up we always imagine what Gracie would of been like at his age. As Abbey is starting to develop her personality she sometimes reminds us of Gracie. Although she is always in our hearts we try not to show the void we feel in our hearts at times. Our time we spend grieving for Gracie is at private moments. Adam and I went to dinner last night and we were sharing how difficult loss is and how your heart is forever changed. We were saying that we feel so blessed that we had the three years with Gracie that we did. Then of course our eyes filled up with tears as we shared stories about our little princess. The "missing part" is what hurts so very much. We will always be comforted in knowing Gracie is safe with Jesus and we continue to pray that God helps us with our grieving for Gracie and that he continues to allow us to rejoice in all our special times with each other, Luke and Abbey.

The night of Luke and Gracie's birthday, we went and got Luke a cupcake...sang him happy birthday and then waited for the rain to stop so we could sing to Gracie and release her balloons.

Make a wish!

I asked Luke what he would like to write to Gracie.

Dear Gracie,

I miss you. I will be up in Heaven when God

wants me to then I can play with you.

I love you.

Luke

We love and miss you Gracie. We cannot wait to

be together again princess. Happy Birthday!

Since it was Luke's 5th birthday we had a birthday party with grandparents, aunties and his special friends. Thank you to everyone who came and made Luke's day so special! Enjoy the video

Since we are still having to be extra cautious with Abbey's health we are having "family days" outside. What better way to spend time together then at our favorite beach, Corona del Mar. Feel so blessed to live so close to such a beautiful beach. I've always loved the ocean...something about it...that's another blog story. :) Here are some pics of our day at the beach.

Adam and Luke on our way back

Thank you for checking in!

All our love, The Chez Family

Request for Help

As many of you know, we try our best at Hopeful Hearts to have as many resources available to families as possible. We are still growing as a foundation and have limited resources in some areas including, "in home care." So I wanted to reach out to all our friends and family to see if anyone can help.

We currently are in the process of starting a blog for Hopeful Hearts however, until it is completed I wanted to send this request over our personal blog.

We have a heart family in Orange County, that is looking for someone to hire to help to care for their four month old heart baby, that they will be bringing home soon. They are looking for someone who is available to work 30-40 hours a week and who could help with the following:

-Administrating medications (preferably someone who is experience in this area)

-Help with feedings

-House cleaning- consisting of sanitizing everything often as the doctors are very concerned with infections

-Laundry

Due to privacy issues I am unable to share too much additional information about the family and their daughter however, if you have further questions or know of anyone who may be interested in the job please contact the heart families friend: Margie Sullivan at margiesato@hotmail.com

You can always contact me as well if you like: terrachez@hopeful-hearts.org

Thank you so very much!

Love to all!

Happy 5th Birthday!

Five years ago today, Adam and I received one of our greatest blessings, Luke and Gracie. Yesterday while Luke and I were outside playing I began to get a little teary eyed. As I watched Luke hit some balls, I was thinking "I cannot believe our little guy is five!" He is growing up so fast. The tears continued to stay as I thought about Gracie and wondered what she would look like today. It sometimes hurts to think she will always be three in our minds, and as Luke's birthday's come (since they share the same birthday) we will probably always go through this feeling. My hope is the hurt is a little less each year and that God continues to keep us focused on celebrating Luke, his life and all the love and blessings we receive from him. As all this was going through my mind, Luke said, " hey mom check out that butterfly, it is flying around your head." I turned so Luke would not see the tears, but then I smiled.

When Gracie passed I read this beautiful story on the life of a butterfly. It explained that it starts off as a caterpillar, then makes a cocoon and then after it has been there for sometime it moves on into another life as a beautiful butterfly. For Gracie's service we released butterflies, which to us represents a "New Life."

When Luke pointed out the butterfly while we were outside I could not believe it. It was as if Jesus wanted to remind us something. I feel that something was...Remember Gracie....miss her and shed tears when you need to, but then remember she is celebrating every day with Jesus and what a celebration that is! We will be sending her up five pink balloons today with a special note for her birthday! Luke always asks..."Mom, do you really think they it will make it up to Heaven.? Only God knows. : )

Today we woke up feeling God's new mercies and we are so very excited to celebrate our Luke's birthday! We thank God every day for giving us Luke, he has been such a blessing to us. For being only five he has the biggest heart! All that he has had to endure has made him a wise soul..he loves big, plays hard and most importantly has Jesus in his heart!

Things he loves:
-His family
-His friends
-His play friends (curious George, Gracie's doggy and pillow)
-School
-Cars
-Baseball
-Basketball
-Video Games
-Going to the park
-Riding his bike
-Riding his Ranger
-"New"Salsa Saturdays (Adam and him go down to the beach climb the rocks and then pick up Adam's favorite salsa)
-Reading books with mommy
-Playing with mommy and daddy
-Loving Abbey and playing with her
and so much more!!

I read this poem and loved it!
No amount of gold could ever compare, to the gift of love that my son shares.I've been blind and I couldn't see that all the love I've wanted is right here in front of me. He gives reason to get through another day. Maybe it's how he loves me in his special little way. And when it gets hard for me to sleep at night....He wraps his little arms around me and says God will make things right! From sweet gentle touches to his bear hugs and a kiss...That great big kool-aid smile and the twinkle in his eyes....Every time I look at him it makes me want to cry. But they're not tears of sorrow; they're tears of pride and joy....Too know that all the love in heaven is wrapped around my little boy. by Sabrina

Thank you God for entrusting us with Luke....we pray that we continue to be the parents that you called us to be. We also pray that you continue to help guide Luke, protect him and heal him.
Happy Birthday buddy we love you so much!!

Enjoying Some Firsts

Aside from miss Abigail still not taking in enough formula and her lungs being wet (which is still very concerning) Little miss Abigail is doing great! I want to step outside of all the concerns we still have for a moment and leap right into how well she is doing....

Her laughter is contagious... No one can make her laugh as hard as her brother. He can pretty much do anything and she cracks up! I love it! I'm going to invest in a flip sometime soon so I can share some of these priceless moments with you.

Her ability to make screaming noises makes our heart smile...she starts slowly talking (Abigail talk) then if no one is listening or she is being ignored it becomes louder and louder...typical girl.

The fact that she just had surgery a few weeks ago and is doing so well is such a blessing...we are just taking in each special moment.

We felt it was time to start a couple "firsts"

So let's jump right into it....First time in her excersaucer.........

Hmm..looks colorful

Big brother Luke showed her a couple things and

she went right at it!

Ok..now we are having fun!

Mommy...enough pictures already!

Since Abigail is not taking the bottle very well and

she seemed interested in food we decided to try cereal

a couple weeks early..she is after all 5 1/2 months!

First time eating

Not sure, but I think it taste good

umm...is there anymore in here?

I think there is a little left...

I think I almost got it all! :)

Tah Dah...All done!

First favorite blankie/kitty

Thanks Dana!

Oh...my sweet girl

We continue to pray that the Lord clears her lungs and helps her appetite come back!

Thank you for checking in.

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