Thursday, September 17, 2009

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

Wednesday, September 16, 2009

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

Monday, September 7, 2009

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


Tuesday, September 1, 2009


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,

Thursday, August 27, 2009

Just Back From Surgery

Praise God Abbey is just out of surgery. We just got done meeting with Dr. Hanley and they were able to complete the AP Window and he was also got rid of the two collateral arteries that were providing the majority of the blood flow to the lungs without going on bypass(helping in the recovery process). With the AP Window all of the blood flow is now going through the Pulmonary Arteries, which we hope will promote growth of the pulmonary arteries. The wait as always was difficult, but we fell very blessed that she is out of surgery and is stable. Today was our sixth open heart surgery with three children, and each one has been just as difficult for us, but with God's comfort, your prayers and the support we recieve from all of you we are able to continue to get through each of these. We are going to see her now and will keep you all posted, please keep Abbey in your prayers as we now face the next step, which is the difficult recovery process.

Thank you!!!

Adam

Wednesday, August 26, 2009

Surgery postponed until tomorrow

We just received notice that Dr. Hanley (our surgeon) has a case that is going to take all day and he will not be able to take Abigail until tomorrow afternoon.  Sigh.  We will keep you posted.  
We deeply thank you for all your loving comments, thoughts and prayers.  


Tuesday, August 25, 2009

Lifes greatest blessings and trials

Preserving through life's trials is not always easy, but without the belief  that God is sovereign and knowing that his ultimate plan will shine through any circumstance, it is this that is carrying us through this very difficult time.  We just found out today that Abigail is going to have open heart surgery tomorrow afteroon.  Not only was this devastating news, we also found out that this will only be a temporary fix until her corrective repair in three months.  We will fix our minds on...God says do not worry about anything, but with prayer and supplication make your requests known to God and then the peace of God will guard your hearts and minds.
Phillipians 4:6-7  With that being said we ask that you would include our sweet princess in your prayers.
Please pray for~
-God to guide the hands of the surgeon (Dr. Hanley)  and all who will be involved in the surgery
-For God to hold Abigail in his hands and protect her little body
-For Adam and I as we feel so very weak and heartbroken that we will once again be facing another open heart surgery for our little child once again.
Your prayers and support have always been such a blessing to our family, thank you.  We will do our best to update as soon as we can. Abigail will be second case so it may be a late afternoon surgery.  

Little bit of information on our week since Abigails arrival.

Monday August 17th:
We enjoyed a great dinner with our family who all came out to be with us for little miss Abigails arrival.

Thank you to everyone for being here for us and for loving us the way you do! We love you!

Tuesday:
"A Blessed Day"  At 10:05 we heard the first cry of our new little princess.  All I can remember is Adam jumping out of the chair to see his baby girl and the tears streaming down my face.  During my last c-section I was put to sleep and did not get to experience the great joy of hearing the kids come into this world.  So, I was extremely excited when Miss Abigail let out her first cry.  Then it was followed with the nurse saying, "She's beautiful-8 lbs(I knew the ice cream would help :) and she has a full head of hair."  Seconds later they brought her near my face and I was able to kiss her her head and Adam and I instantly fell in love with our new little blessing.  Adam followed the nurses to the NICU and I followed shortly there after (passing a big cheering section-our family :)  and was wheeled on my bed directly into the
NICU (what an amazing experience) to hold my baby girl.  I wish I could share with you how much that moment meant to me.  
THANK YOU GOD FOR THIS BLESSING YOU ENTRUSTED TO US

Our new little blessing
Abigail Elyse Chez
8lbs 19 1/2 inches


Wednesday:Such a special day!  Luke came in to meet his baby sister.  His eyes were beaming and he kept saying Hi Baby Abigail...while rubbing her hair and kissing her forehead.  Once again tears filled my eyes as thoughts of Gracie continued to run through my mind...Gracie would of loved to meet her sissy and now Luke once again has a sissy here on earth with him.  Someone to love on like he did with Gracie~Someone to share his love until he meets up with Gracie in Heaven.






Thursday and Friday:  Sweet baby girl had her first procedure a CT Scan which in the end the results were not as clear as we hoped so we scheduled a Catheterzation for Monday.  Once the scan was done we were able to spend quite time with her.

During this time Grandma Laura and Grandma Marsha have been with us every minute and have been more than amazing with their strength, love and dedication.  They have been spending time with Abigail and of course day in and day out with Luke.  Luke is running the show with his Grandmas and needs serious boot camp when we return home...No words will every be big enough to express how much we appreciate our moms.  WE LOVE YOU!




Saturday and Sunday:Were quite and we enjoyed time holding, feeding, loving and caring for our sweet baby girl.







With our recent life events I have continuously been praying for God to help us fix our eyes on eternity and to live cherishing each moment.   Life is to precious to worry about what tomorrow will hold.  So we try to cast all our burdens on God and trust in him.  So we did our best during the week to live in the moment and love on our baby girl.

Now here we are today Tuesday the 25th awaiting Abigails surgery tomorrow.  This is when living in the moment becomes difficult.  This is when the fear sets in with the hurt.  When I look at Abigails innocent little body knowing that tomorrow she will have open heart surgery...the thought makes us want to just fall apart.  After this surgery and the additional weeks in the hospital we will look so forward to coming home as a family and going back to cherishing all those special moments.....again we appreciate all the prayers we can get tomorrow.

All our love,
The Chez Family
 



Wednesday, August 19, 2009

Our new little blessing

Our new little blessing~
Abigail Elyse Chez
8lbs 19 1/2 inchez


Our sweet baby girl is doing well and we are running test the next couple of days to see how to proceed with her heart condition.  We feel so very blessed and will send a more detailed update with more photos soon.  

Thank you for all your thoughts and prayers..All our love!

Sunday, August 16, 2009

Wanted to send an update on our favorite little man, Luke.  On August 5, we went to see Dr. Perry. (the Dr. who put Luke’s stent into his existing valve)  The echo showed there has been no changes at this time.  Praise God!


 An echo is one appointment Luke does not mind

I don't like Luke to be surprised by any appointments so, after Luke’s open heart surgery back in September ‘08’ I promised him I would always be honest and let him know what each appointment was for.  Of course sometimes this ends up being really difficult when I have to tell him when he is going in for a procedure.   Which brings me to last Tuesday....


After meeting with Dr. Cox (Luke’s GI Doctor) we felt we needed to complete one final test (Endoscopy) in hopes to find the cause of his constant discomfort and occasional vomiting.

 We are already aware of the fact that Luke has:

-Reflux

-Esophagitis

-Possible Abdominal Migranes

But we wanted to make sure we were able to catch any allergies and most importantly if Luke had a bacterial infection. 


We had to wake Luke up early on Tuesday for the procedure, which sadly is a sign to him that he is going to the hospital.  It broke my heart because he started crying and saying, “Mommy and Daddy” please don’t take me there, followed by what are they going to be doing?  I explained we had to go do a test to check on his stomach.   Then when we were there he was crying and begging not to get the red medicine (Versed-helps in making them sleepy before the have to be put to sleep and also helps with anxiety).  He of course threw it up :( and we had to take him in without the medication.  I was unable to go in the room, since I am pregnant so Daddy went in with him.  I was sitting in the room as I heard Luke screaming to his Daddy because they were trying to put the mask on him.  Thank goodness the procedure was only 20 minutes and Luke started to wake up within 20 minutes thereafter.  

As we were in the recovery room, Luke just did not seem right.  He then sat up and started throwing up blood. :(  Which was followed by his entire face turning bright red.  They explained the blood was from the biopsy and they felt the redness and swelling of the face was  some type of allergic reaction to the antibiotic.  Although this was a small procedure compared to the others he has had to face, it was still heartbreaking to see Luke go through all of this.

I did my usual one minute thing, “Lord why is it we have to go through all this?”

Then the wonderful thing that we are blessed with is, God’s comfort.  It’s just in our tired moments and when we hurt for our children we loose sight sometimes of God’s soverignty. Which in my heart I feel is totally OK and normal.  As long as we are brought back to the truth and do not dwell on things that our not in our hands. 

*Thank goodness for our faith in the Lord and thank goodness he is there whether it’s big or small he is always there catching us and pulling us back up.

After a few hours we were able to come home and by the next day, Luke was ready to go.  We are thankful this will be one of the last “big” test he will need in regards to his GI Issues.  Once the results are provided we can move forward and continue a plan of the correct meds and continue to work on feedings.

So glad it is behind us and now our little guy is back to having some fun.


Last Sunday we got a special visit from Grampy and Mimi.  We went to Cheesecake Factory to celebrate an early birthday for Grampy.  We had a great visit and of course Luke had lot’s of fun playing with them and was excited that they had a sleep over.  



On Thursday we had another real special visit.  When I became friends of the Nelson family I was so deeply touched when Victoria shared an update with Moriah's sweet friend Vivian.  It made me so happy to see the girls together and the bond that Victoria and Hannah had instantly, as most heart moms find.  I've since followed Vivian's blog that is dedicated to her by her mom, "Hannah" and have been so touched and inspired.  Hannah and I shared some emails and since she lives in the area she offered to come visit Luke and I.  AND what a treat it was!  I just loved them both.  Grandma Laura, Luke and I truly loved our time.  Thanks Hannah for the visit, YUMMY food and for Luke's book. 

 


Grandma Laura and Grandma Marsha took Luke to San Francisco on Friday, for the day.  They spent time at pier 39 and had lot’s of fun! Luke is the happiest boy in town when he is with his Grandma's. :) 



The end of our busy week...yesterday we headed down to the park (at our complex where we are staying) and enjoyed a hosted “kids day at the park”  Luke had so much fun! Later that evening with only 3 days left for our baby girl...Adam and I went on what will probably be our last date night for quite a while :)  Thanks Grandma Laura and Grandma Marsha for watching Luke!


We have our c-section scheduled for Tuesday, August 18th at 9:00am.  Please help us pray for a safe delievery and for God to guide the hands of all the doctors and nurses who will be taking care of our sweet baby girl as soon as she arrives.  Thanks for checking in!  




Tuesday, August 4, 2009

Awaiting our baby girls arrival

We are officially settled in up north. For those of you who were unaware, we will be delivering our baby girl at Lucile Packard Children’s Hospital at Stanford, in Palo Alto, CA. There were a few reasons as to why we chose the hospital. One big one is that we wanted to have Dr. Frank Hanley, a gifted heart surgeon, perform the surgery on our baby girl. Dr. Hanley specializes in the corrective surgery for the heart condition that she has and after meeting him a couple of times, we are extremely confident in his abilities and most importantly LOVE his sincere personality. He listens to all of our concerns and has taken all the time needed to make us feel comfortable and confident in what will need to be done with our precious baby girl.


We arrived here in Palo Alto over a week ago and last week we were at the hospital taking care of all our big appointments:

-We had an ultrasound and baby girl is growing and everything looks great.

-I’ve been contracting quite a bit, but she does not seem to be affected by them at this time.

-Scheduled my C-section for August 18th-Please pray we make it that far, we want her to be as big and strong as she can

-Met with Surgeon Dr. Hanley-As I mentioned before, we will not know until she is born if surgery will need to be done right away. He did mention there would be a very high possibility that we can stabilize her enough and take her home for 2-3 months before she needs her surgery. This will help in getting her a little stronger for what is to come.

-Met with Dr. Susan Hintz-Neonatology- she went over in full detail as to what the plan will be as soon as our baby girl arrives:

*She will be immediately taken into the NICU

*Within a few hours they will then do a Cardio echo

*Day 2 or 3 Dr. Perry will then perform a cardiac Catheterzation on her. Which means they will put her to sleep and then insert a long narrow tube into the blood vessels near the groin area. This procedure allows us to take pictures of the heart and how it functions. Which in return will give us the information we need to see when surgery will be needed.

*if the findings are favorable, they will then start feedings and we should be released within a few days. We will return home for the two months and then be back up for surgery.


After meeting with everyone we feel blessed to have such a great team in place. We have been so very pleased with every single person we have met. From the surgeon, many Doctors, nurses to the staff. Everyone has been so kind and very knowledgeable with our case. It seems as anyone who reads our file, gives their condolences about Gracie, then they ask how luke is and they follow up with assuring us we are in excellent hands and baby girl chez will be very well taken care of. Such a blessing!


We will miss the wonderful team at Children’s Hospital of Los Angeles as they too have become part of our family. We will look forward to going back to LA to continue our follow up care with our children's cardiologist Dr. Skalansky and all the other wonderful staff that we love so much.


As for our little man Luke. He will be getting an echo tomorrow to see how his heart has been reacting to the stent. Also, we have been dealing with many vomiting episodes and have been trying numerous medications. Dr. Cox up hear at LPCH ran some blood work on Luke and the tests came out good. He believes Luke could be suffering Abdominal migraines and has started him on an additional medication. We continue to pray for Luke’s GI issues to get better and for a good echo next Wednesday.


God has been very gracious in helping us stay strong. We have been brought to our knees and completely humbled by him. We are doing our very best to not be anxious about what is to come. We know trusting in God means to trust in him completely and at all times.

God is the one who gives us life and it is his plan that we continue to trust in.  Even though we are nervous for our baby girl we are so very excited to meet her and see her beautiful face and precious little body. We have been on many journeys and through them all, even the darkest moments we have witnessed Gods love. Although our time with Gracie was so short she truly was such a blessing and a great gift of love from God. We know our baby girl is just another addition to the love that God has provided us with.


While we have been awaiting her arrival we have really been enjoying our time here up north. It is absolutely beautiful up here. Being 25 min from San Fran., 15 min from Half moon Bay and 40 min. from Napa, how can you go wrong? Not to mention the beautiful tree lined streets, quaint downtown, being at an arms reach from Stanford University and the hospital, and mine and baby girls favorite “the food,” it’s so good! We have yet to have a bad meal.


Here are some photos we have taken in just the short time we have been here..



One of many tree lined streets..
We are renting an apartment for our stay and this is 
the path Luke rides down daily to his favorite park.

The first weekend we were out here we decided the boys would
pick what they would like to do on Saturday.   Daddy's choice was.....



And Luke's choice was....of course cars :)


And his favorite one was...
And mommy's choice was.....
Golden Gate bridge and of course.....
A Great Big Ghirardelli hot fudge sunday...yummmm!
We headed out to a great park to do what Luke loves best..
ride trains.  Grandma Laura was with us.  She has been amazing!
From driving us up..to getting us settled..to helping watch Luke..
to being out here when Daddy has to go to work. 
 Thanks mom for everything!  LOVE YOU!
We also had the chance to have a play date with Tyler and Riley Cox
Thanks Laura for meeting us at the park we had a great time!
Michelle (Danielle's sister) also lives up in the area and her and her
 beautiful sweet kids came over to visit us.  They brought Luke
 a fun bag of great activities to keep him busy while out here and for
 hospital visits.  The kids had a chance to play at the park and also
 went swimming in the pool. Thanks Michelle!
Here are the two Luke's, Lauren and Ella
The Ritz Carlton at Half moon bay.  Absouletely beautiful!  
We just went down for an hour to check out the
 view and  enjoy this amazing property!

Right down the street from us is Stanford University.  

Adam was so patient and took some great pics of mommy and baby girl Chez


One of my favorites... me and my guy...







Our next post will probably be after our baby girl arrives.  We thank everyone as always for all your prayers, love and  support.

All our love,

Adam, Terra, Luke, Angel Gracie and baby girl Chez