Sisters by Heart, Book of Hope

One of the first things we did when we found out about Hallie's heart defect was search for positive outcomes and stories of success.  What I found was an abundance of scary stories and statistics.  NOT the kind of thing you want to hear when you receive the terrifying diagnosis of HLHS... You want to find something happy and positive and hopeful to hang on to!  Since then I have realized that there are a lot more "scary stories" out there because those babies need the extra support and an abundance of prayers and loving words...and those stories spread awareness so that the public knows THERE IS A HUGE NEED in the CHD community for funding and research...and I guess it helps to know what "could happen" just incase it "does happen" - there is positivity in that... BUT if you search hard enough, and ask around, and pray and pray...you will find that ray of hope...

I decided from the beginning to document Hallie's journey... for her, for me, for our family & friends, to showcase God's will and power of payer, and to hopefully give others a success story to follow, so that they know there is most definitely hope with this disease, and you can not give up on your child... you have to be strong for them from the very start.  When they are confined to their hospital bed, you have to touch them and talk to them and sing to them and pray over them, don't be scared of them, let them feel your presence anyway you can...even if all you get to do is change dieapers...even when you feel terrible and helpless, you have to be there for your child - they feel even worse than you do and it helps so so so much to project positivity and prayer on them.  Give yourself moments of grief, because of course everyone needs that release, but then go right back in there headstrong and hopeful...and know in your heart that God heals all.

Sisters by Heart is a fabulous organization that provides information and care packages to families of newly diagnosed babies with HLHS.  They recently asked for stories of hope, 250 word or less, to be included in their new care packages.  We submitted Hallie's jouney and I am SO excited to announce that ours was selected to be included in the book!!! The book will be published in the coming months.  SO many families will be reached and we are honored to be a part of it.

Here is our submission:

Hope for Hallie’s Heart

Half way through my 2^nd pregnancy, the day before Christmas Eve, at a routine sonogram, our unborn baby girl was diagnosed with HLHS.  We were stunned, devastated, and heartbroken.  News like that is life changing.  You wonder how you will ever get through it, how your family will get through it, most of all how your new baby will get through it…  For almost 5 months we feared the unknown… we worried… we submitted ourselves to God and held onto our faith.  We educated ourselves on what to expect, knowing all the time that there were so many different possibilities and outcomes – negative and positive, we chose to focus on the positive.  We prayed and prayed, along with family and friends, that our story would be one of triumph and success.  We prayed through the unknown, through the anxiety and worry, through 2 surgeries, and extensive hospital stays…and we never lost hope.  We felt overwhelming gratitude and joy in every outcome, more love than we have ever known, and saw proof that this journey is not hopeless by any means!  One year after being diagnosed with HLHS we are loving on, a beautiful, bouncing, baby girl! Hallie Grace is 8 months old now and by looking at her, you would never know what she has been through.  She has defied the odds and amazed us all, including her doctors, over and over again.  Hallie is our miracle, our constant reminder that we have been abundantly blessed!

For more information on our story please visit http://heartsforhallie.blogspot.com
Or Hallie's facebook page https://www.facebook.com/pages/Hearts-for-Hallie/644557605623619
 

Christi Garcia - mom to Hallie Grace Garcia born May 8, 2014. She is almost 3 months post-Glenn and doing fantastic!

Today is THE DAY that God made...

Our precious Hallie will be delivered today via C-section at noon!  I am more excited than anything to meet this sweet princess! 
I am surprisingly not nervous... yet. I am up early and ready to go with plenty of time to spare, which is soooo unlike me.  I am ready!
I stepped outside this morning and thought how still and peaceful everything was... after days of high winds, it was still...no cars, no sounds, the birds were quiet, the trees weren't swaying... be still in the Lord.  That is all I can think of.  Be still in Him and wait... He is here with us this morning and will be throughout the day. 
I love you Lord. I thank you for all the blessings you have given us and the ability to see those blessings.  I thank you for Hallie and all she will be!  I can not wait to meet her! I am blessed beyond words to be her mother!
Amen.

One week!!!

WOW... where has the time gone... we have ONE WEEK until Hallie's scheduled arrival.  May 8, 2014 is the big day... That is, unless things happen before then and they very well may!  Avery has been very clingy lately... I feel she senses something big about to happen... my body is already in labor mode...I feel small changes every day...its only a matter of time, and not very much time at that...a week is not very long!  I will be 39weeks and 3days on the 8th.  Our sweet girl is measuring 7lbs 10oz.  She'll be nice and healthy when she comes into the world. I am so excited to finally meet her and see her sweet face.  I am definitely nervous but to know that all this waiting and wondering and worrying is about to come to an end, brings me peace.  I know the Lord is with us. 


TRUST IN THE LORD WITH ALL YOUR HEART!!!
AMEN

36 weeks and counting...

Well we are getting close!!! I am 36 weeks pregnant and Hallie is growing like a weed! The fetal specialist, Dr. Tabor, is measuring her at 6 lbs 15oz... that is how big Avery was when she was born at 38 weeks.  Crazy.  We are all doing well and managing our stress level fine. As the days tick by, I get more and more nervous.  They are still saying a VBAC is do-able if that is what I choose to do... but things may change as we get closer...
Other than that I do not have any news to report.  I am in MAJOR nesting mode, cleaning out everything in the entire house.  Trying to get as prepared as possible.  On my list today is pack a bag!


We are looking forward to Easter!! Be thankful for your family, friends, and God's abundant love!  Thankful that He sent Jesus to teach us of God's loving ways and to die for our sins.  Where would we be without Him!  I can't help but reflect on how Mary must have felt watching her only son beaten and tortured for his love of the Lord.  What pain she must have felt.  As a mother I can not imagine.  She never seemed to lose faith in God even through all of the unnecessary brutality that Jesus endured... I can only hope and pray that the Lord blesses me with that type of strength when I need it most.

May the Lord bless you and protect you.  May the Lord smile down on you and be gracious to you.  May the Lord show you his favor and give you peace.

Numbers 6:24-26

Update

Just an update on what all we have been up to over the last couple weeks...
It has been craaaazy around here. Avery turned the big 2 on Feb 27 and we had her Dora birthday party at the wonderful playground at Christ Chapel...unfortunately the poor birthday girl had to leave right when it started because the stomach bug struck... hard... 30 minutes before the party started!! So her friends and family enjoyed the party and cake and she opened her gifts later that night when she was feeling a little better.  Her appetite did not come back for a week! Literally.  The rest of us got it a couple days after she had it...wow oh wow... I literally have not been that sick in years, fever, aches, chills, pregnant with a 2 year old running around. NOT fun. But we are well now and loving the warmer temps.


I will be 32 weeks along on Monday, March 17.  My belly is huge! Hallie moves a lot! She has some sharp knees and elbows I tell ya.  Last Wednesday, March 5, we had our 2nd echocardiogram with Dr Roten and met the surgeon, Dr. Tam.  Such a long day! The thing is, on a day to day basis, I sometimes forget what is going on, and we all feel normal... then you have a day like that where you do nothing but think about it and it is so exhausting! I've said it before but its the same every time...it takes a couple of days to come down, back UP rather, from that.  Its emotionally taxing.  The echo showed everything to be the same as before and progressing at it should... Dr. Roten does not feel she needs to see us again until Hallie is here...which is good b/c they do not think they will see any changes in the things the echo is picking up...but the reality is that we really do not know the whole picture until Hallie is here.  Unsettling, but I get it.  Dr. Tam is fabulous. I feel Hallie will be in great hands.  He is very knowledgeable, very impressive, and very personable.  I just like him.  He is an optimistic type person and says he will only be optimistic with us.  He did not have a whole lot of heart info to add really because Dr. Roten has done an exceptional job of informing us and answering every tedious question we have.  He stresses that we have to take these surgeries one at a time...we have a long road ahead of us, take it one day at a time...every heart and every baby are different thus making our journey different from anyone else's....that we can not compare our baby's issue to anyone else's because these situations are so individualized...what happened to the family next to you with the same defect may not happen to you at all and vice versa. 
I read somewhere that you have to look at each baby's heart as if it were a snowflake... there are no two alike.


As for my OB appointments and labor etc... They are now saying I will not go past 41 weeks (May 19) and more than likely not even 40 weeks (May 12).  If I am not showing any labor signs at 38 weeks, and depending on baby's estimated weight. then we will likely schedule a C-section. I will not be induced because they do not like to induce VBACs because the Pitocin is too harsh and makes contractions too strong for a uterus that has scar tissue/has already been cut once.  They do not want to go too far past my due date because of the risk of baby having a bowel movement and ingesting meconium (baby poo)...that can cause respiratory infection and the lungs have to be as healthy as possible.  SO... as much as I hope and pray I go into labor on my own and its a normal, easy, fast, perfect delivery...I am not getting my hopes up.  There are 2 main reasons I would prefer a regular delivery over a cesarean...
1. It is great for baby to go through the birth canal to squeeze out the excess amniotic fluid from her lungs... I worry about those lungs.
2. I will get to hold her for 10 minutes or so before they take her to the NICU.
Then we won't get to hold her for a week... except a few minutes right before her surgery. 
With a C-section the likelihood of ME getting to hold her is slim.  Donny will hold her, I will get to see her right up next to my face but my arms will be strapped down and by the time they sew me up, which takes about 20 minutes in a perfect world, she will have to go on over to the NICU.
Maybe #2 is a selfish reason... but I won't do well with that... I already know it. They will wheel me over to see her and all...and we can touch her...but you mama's know its just not the same.  Longing to hold a baby you have been carrying in your belly for 9 months and then you can't hold them in your arms... torture.  We will get through it tho. It is what it is.


I have been asked a few questions and thought I would answer them here incase anyone else was wondering the same:


One term a lot of people, including myself, have trouble with is what to call "normal" babies verses what you call babies with CHDs (Congenital Heart Defects).  The term "Heart Healthy" is what is used throughout the CHD community to differentiate between the two.  For example: Avery is my heart healthy daughter. OR Avery is Hallie's heart healthy sibling.

1. What is the name of the defect Hallie has?  She has Hypoplastic Left Heart Syndrome... HLHS for short. I usually call it HLHS.  When referring to defects in the CHD community I would say "my HLHSer".  Such as "Avery is my heart healthy daughter and Hallie is my HLHSer."
2. Will she weigh the same as a heart healthy baby?  At first most likely she will, unless she stops growing in utero at some point, which they do not expect but... Another wait and see.
3. Will she grow the same as a heart healthy baby?  Maybe, maybe not... it depends on her and how she feeds and how her body processes her feeding.  She will get nutrients no matter what, even if it is through a feeding tube but its not like with a heart healthy baby...you feed them until they're satisfied, some eat more than others, g-tube babies have a little more of a standard amount they eat and when you introduce bottles they burn a lot of calories b/c it takes a lot of work for them to suck, they are not use to it b/c it is not something they do immediately after birth.  So, again, we just wait and see...
4. Will she reach the same milestones as heart healthy babies?  Most CHD babies are behind on their typical milestones.  Eating of course is a big one, fine motor skills, sitting up, crawling, walking... all will be most likely be delayed.  A lot of that too has to do with the 2nd surgery happening right in the middle of their first year...if you had open heart surgery it would be difficult for you to get around too!  They do catch up eventually, maybe at a year, maybe at two... Every baby is different!
5. When will Hallie go home from the hospital?  Wait and see.  Hopefully a quick 4-5 weeks and we're outta there... some babies stay until it is time for their Glenn (2nd surgery)..some split the difference.  There are just so many factors involved.
6. What can she wear in the hospital?  At first, she will just be swaddled in her diaper.  Then we can put things on her that do not go over the head, do not cover the feet, and can button down completely... she will have a lot of wires and lines that do not come out...it needs to be as easy as possible to get the outfits on and off to change diapers, change/check dressings and monitor her in general.  Also she will have a pulse ox machine on her foot, so that is why no footed things.  She can wear baby legs, ruffle butts, side snap onesies and gowns, convertible gowns, hats and bows.
7. Will Avery be allowed to see her?  Not in the NICU.  They only allow children 3 and up...and that is where we will be a majority of the time.  The CVICU is where Hallie will be right after her surgery and they will allow Avery in there to see her.  We will be in there at least 3-4 days.

I am so thankful we have God in our lives.  Where would be without him... I shutter to think.
My prayer is simple: 


Thank you God for being in our lives and helping us through this situation.  No one else can do it but you. We have a long road ahead of us.  We do not know what is in store for our family but we have faith and hope in you and that you will take care of us each step of the way.

When you pass through the waters, I shall be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you.

Isaiah 43:2

Joy Amidst Suffering...

We have entered the 3^rd trimester! We hit 28 weeks on Monday.  Just had both baby and mommy doctor appointments this week.  At the fetal specialist, doctor said Hallie is looking perfect, she is in the 55 percentile for growth, weighing in at 2lbs 11oz and measuring 28-29 weeks, which is right on…and is VERY active.  We saw her open her eyes, yawn, and move her hands in front of her face to tell us to leave her alone :)… We also saw some hair poking off the back of her head…never saw that on any of Avery’s sonos so maybe that means this child is going to have a lot of hair, I can’t wait to see what color it will be!  We go back in a month (32 weeks) and then will start seeing him every week until delivery.  My doctor, Dr. Robbins, says everything looks great with me and she is very pleased.  I will be seeing her every other week now.  We have had a series of great weeks, praise God!

I believe we truly are experiencing the meaning of what joy amidst suffering is like…Such an extremely difficult concept for people to grasp.  Easier said than done, believe me I know, but when you immerse yourself in God’s word things just seem to fall into place.  Many have commented on how “strong” we are.  I sincerely thank you for those words, it feels good to hear that, I take it as a huge compliment…BUT I cannot take credit for that strength.  It is not me or Donny or anyone other than the Holy Spirit working in us, giving us that strength.  I know that for a fact.  It began to manifest in one prayer filled, emotional roller coaster of a day, the day we found out about Hallie's heart, and we have not been the same since…

I attend a bible study through Christ Chapel called Women in the Word.  Last week we talked about suffering.  I feel that maybe the Lord’s whole reason behind moving me to sign up for this bible study was for this particular lesson.  It was over Psalm 77.  It spoke to me very strongly.  A couple of passages brought to light were James 1:2-4 and Romans 5:1-5.  I know the Lord is working in our lives because prior to this experience I did NOT get the idea that anyone could have joy when they are suffering…at. all.  How in the world can you be happy when you are hurting? Followed closely by all the “Why” questions you can think of…like, “Why is this happening to us? Why does my baby have to go through this? Why would God punish us like this?  Why won’t He just take this away?”  I began to search for the answers to these questions because, for me, the cliché answers just weren’t cutting it this time.  I didn’t have to search very long because God answered almost as soon as I asked.

I have always believed in God and understood how powerful prayer is, I do believe the bible is an accurate account of God’s word, I do believe what my Pastor says, and trust what my parents and grandparents have always told me…but there comes a time when we question things and sometimes you need to research these questions for yourself, the wealth of knowledge you gain when doing so is priceless…I learned so much more than I expected!

 

My sermon notes from Women in the Word sum it up perfectly...

Suffering 101:

• God doesn't usually take us out of our suffering, as much as He takes us through our suffering. 
• Our troubles and our trials spiritually mature and complete us. 
• God's hope is that we follow His lead when we find ourselves on a troubled path.

 

In working through the bible study I was grabbed by the following verses.  These were taken from the Life Application Study Bible NIV:

 James 1:2-4

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. 

The bible explains…“We can’t really know the depth of our character until we see how we react under pressure.  It is easy to be kind to others when everything is going well, but can we still be kind when we are treated unfairly?  God wants to make us mature and complete, not to keep us from all pain.  Instead of complaining about our struggles, we should see them as opportunities for growth.  Thank God for promising to be with you in rough times.  Ask him to help you solve your problems or to give you the strength to endure them.  Then be patient. God will not leave you alone with your problems; he will stay close and help you grow.”

 

Romans 5:1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand.  And we rejoice in the hope of the glory of God.  Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope.  And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.


The bible explains… “In these verses we are introduced to some difficult concepts.  It helps to keep in mind the two-sided reality of the Christian life.  On the one hand, we are complete in Christ (our acceptance with him is secure). On the other hand, we are growing in Christ (we are becoming more and more like him).  We feel both the presence of Christ and the pressure of sin.  We enjoy the peace that comes from being made right with God, but we still face daily problems that often help us grow.  If we remember these two sides of the Christian life, we will not grow discouraged as we face temptations and problems.  Instead, we will learn to depend on the power available to us from Christ, who lives in us by the Holy Spirit.”

  

In searching for the answers we are filling our minds and our hearts with His word and gaining a greater understanding of how he works and building a deeper more meaningful relationship with Him.  Our joy is celebrated through small victories.  We rejoice in the little things.  We appreciate every day moments.  We have slowed down and taken more time to see our life for what it is.  Isn’t this what the Lord wants for us anyway?  Yes.  Isn’t this how we should be living?  Yes.  Why haven’t we done this in the past…well, I could probably go into a whole book about this but the important thing is that we are here now and are very thankful that we are.  He has worked through us, through our suffering, to achieve these things for us… to make us see, to make us trust in him.  Suffering is part of humanity…everyone will suffer (Christians and non-Christians alike)…at different times in our lives…in different ways…ours is beginning now…the blessing in this, is that we get to experience a deeper relationship with Him now rather than later…He will get us through...He will not leave us alone.  For many people, a deep spiritual journey begins when a hardship or crisis arises…I can admit that is what it took for us...which is completely normal…that too is human...the important thing is that we grow from it.  I accept that Hallie is the reasoning for ours and am blessed by it even though with it brings pain.  Joy amidst suffering…

 

Thank you Lord for being so faithful and compassionate and allowing us to witness your miraculous works.  We appreciate being able to reflect on your past workings in our lives and recognize the blessings you have given us.  This provides us with proof that you are there and alleviates any doubt we may have about the future.  May we find our strength in you, that we may persevere through this trial, and grow rich in your word.  In Jesus name we pray, Amen.

Awareness...

February is American Heart month.  This month the nation pushes recognition and awareness of all things HEART.  Today begins CHD Awareness week, February 7 -14.  CHD stands for Congenital Heart Defect.  This, of course, means more to us now than it ever has in the past.  Awareness is important people!  I, for one, never really thought about CHD’s prior to this, never really heard much about it.  Sure we hear about “heart disease” in adults and “birth defects” in children but rarely do I hear anything about “heart defects” in children… which is one reason why it was so shocking to us that our child has one.  Surprisingly, CHD’s are THE #1 birth defect in children and occur in almost 1% of all births, which are approximately 40,000 births a year.  CHDs are also the most common cause of death in infant births due to birth defects…primarily because of unawareness. Doctors do not routinely check for heart defects, only if they are clearly present on a sonogram, like the heart is on the wrong side of the body (which happens more than we think)…or if you have an existing condition that requires a detailed sonogram (such as in our case with MTHFR), are these defects caught...though many are hard to detect even on a sono.  Many of these babies look and act perfectly normal in utero.  My Hallie sure does…she measures perfect, has a normal heart rate and she moves and kicks A LOT!  I would not know any different.  Makes me thankful I have a weird blood disorder that requires a more detailed sono J.  It is our responsibility to put checks in place, to push for those checks to be mandatory, just ask your doctors to take a closer look.  You can also check by requesting your doctor do a 45 second "pulse ox" before leaving the hospital with your newborn.  It is a small device that goes on the babies foot, nothing invasive, very simple to do, simply checks their oxygen levels.  The statistics really are staggering… CHDs are as common as autism and 25 times as common as cystic fibrosis, both of which I know all of us have heard of…so why are we not as aware of congenital heart defects?  We need to push awareness, so that more funding is available, so that we can have more checks in place, so that we can save more tiny lives in the future.


All of my statistical data was pulled from this fact sheet put out by Mended Little Hearts, some of these facts and statistics are shocking to me.  Please take a look when you have a chance:
http://mendedlittlehearts.org/Docs/Facts%20&%20Statistics%20About%20CHD.pdf



1981 was the year of the first successful Norwood procedure (1^st of 3 surgeries) performed on a newborn baby.  Just 33 years ago.  I am 34.  In my short lifetime an entire world was created just for these heart babies and their families.  How amazing is that?! The support and resources available for coping with this diagnosis are astounding.  We are very blessed to be a part of such a strong and positive support system… from the doctors and nurses, to the support groups, to our family and friends. Thank you all.

"Above all else, guard your heart, for everything you do flows from it."  Proverbs 4:23

"A heart at peace gives life to the body..." Proverbs 14:30

"When a man is gloomy, everything seems to go wrong; when he is cheerful and full of hope, everything seems right."  Proverbs 15:15

"A cheerful heart is good medicine." Proverbs 17:22

“Be Still and know that I am God.” Psalm 46:10

Thank GOD ALMIGHTY for modern medicine.  Thank you for those special people who make it their life's work to find ways to help tiny babies thrive and live outside their mother's womb when not so long ago they would not have stood a chance. Thank you for the families who commit time and energy to support each other and this cause.  Thank you for providing us with the hope, peace, and strength to deal with this situation on a daily basis.  I ask that you continue to bless us with these things as we continue to be still and listen to what you have to say and watch how your miraculous works affect our lives.  We could not do it without you. Amen.